I'm sending this out to any parent out there who may have a baby with congenital hypothyroidism. My fourth son was born with this condition and my husband and I are always looking for anyone who can relate. It feels like no one really understands because we are from a small town and my little one is the only one around with this. At his local doctor's office he is quite popular because anytime I bring him in they are very interested in anything he has done. He has been on synthroid since he was a week old. I would just really love to talk to anyone who can relate. Thanks.
My daughter, now 10 months old, has congenital hypothyroidism. I am very interested in learning from other parents what they are going through, and how there child is developing. I would also love to learn about any effects she may face as she gets older. I don't know anyone else that has this condition, or knows much about it. My daughter has been on synthroid since she was 3 days old. She is developing very well, actually quite advanced for her age.
Thanks for getting back to me. My son is also 10 months old. What a coincidence, huh? He was born in April 2007. He has been on Synthroid since he was 1 week old. I feel he is also quite advanced for his young age. He has actually already started walking, which is much younger than my three older boys did. I was totally unaware of this condition until he was born. Did your doctor scare you to death like mine did? When we received the call about his blood work all my ears heard were, deformity, severe retardation, etc... I kinda freaked out at first. Since then we have fallen into the routine of daily medicine and blood tests. I've come to realize that we are so blessed to have had the PKU that caught his condition. I'm very interested in talking with you more if you would like. I've searched for someone else who could relate since he was born so it's great to talk to you. Is your daughter's thyroid completely absent or just not functioning? My boy's failed to move down his neck; therefore, it does not function.
It sounds like the story of my life. My daughter was also born in April 2007, actually on the 24th of April...how about your son? She is also walking already, she started walking at 8 months, which seems to be extremely early. My husband actually took the call from the doctors office, we had the same reaction you did, but all they would tell us on the phone was to, "Get her to the doctors RIGHT AWAY for another blood test" I will never forget the words coming out of the doctors mouth when we ment with him...cretinism, retardation, and medication for the rest of her life. I was extremely scared, but we have a lot of support from her pediatrition. Like you, we live in a small town where no one has ever heard of Congenital Hypothyroidism.
The endocronologist seems to think she does not have a thyroid, but I am still holding out hope that it just isn't functioning yet. She had a nucleur scan done when she was about a month old, but no sign of any thyroid activity. She is now on levothyroxine, which i believe is the same as synthroid. Do you notice any side effects on the medication? How do you give it to him? I have heard it is more common is girls then boys.
Thanks for sharing your story with me, I look forward to learning more from you.
Oh my gosh, it's like I am listening to myself! We are so much alike. My boy was born on April 23, 2007! Can you believe that!!?? My little one had his nuclear scan done when he was 1 week old. It highlighted his thryoid which was way up under his chin. The doctor told me it would never function and that they would not even be able to find it if they performed surgery. We heard the same words...cretinism, etc. I think I cried for a week. My husband also took the call, and then, bless his heart, he tried to relay what they were saying which only made it worse. LOL Anyway, my son is on Synthroid and his endo. actually told us that we could not give him the levothyroxine because it was not as effective. He made it a point to inform the pharmacy that we could not substitute.
I have seen no side effects of his medicine and he has actually started taking it whole instead of crushed up, which amazes me. He just wallers it around in his little mouth until it dissolves. When he was newborn I would crush it up and suck it up in a syringe with some formula and feed it to him. Then when he went to baby food I would just crush it up and mix it with a bite of food.
He has also been checked for a heart murmur. They told us that he couldn't take his medicine with soy, peanut butter and several other foods because they bind the hormone and don't allow it to absorb. Did your endo. tell you that? We had to be sure his formula was soy free. But we were blessed with the fact that he took right to his formula and never had a problem.
It is so great to be able to talk to someone who understands! Thank you so much for sharing with me and I really hope to talk with you much more. Hope to hear from you soon, God bless!!
I was not told she couldn't take her meds with anything specific. I have heard that it should not be mixed with any iron enriched formulas. But we just crush it, mix it with a few drops of water, and give it to her me spoon. I have been thinking about trying to give it to her whole. Maybe since it is working well for you, I will give it a try.
Can you tell me more about what your son is doing developmentally. My daughter seems to be doing everything sooner than most, I have often wondered if the medication has helped her develop faster. She rolled over at 4 months, crawled at 5 months, sat up on her own at 6 months, and walked at 8 months. She talkes quite a bit also her her age.
Thanks for sharing!
I have been so amazed at my little boy. He seems so intelligent for his age and has actually done many things much earlier than my older 3 boys did when they were his age. I have wondered the same thing about his medication. He has even tried coloring already. I know that sounds crazy but he was with his Granna and she said he picked up a crayon and came to the paper and tried his best to color. She said it amazed her. He interacts and plays with his older brothers so much and has for quiet awhile. He can already call one of my sons by his name and tries his best to say "I love You".
In the beginning I was so taken aback by the fact that he had a "birth defect" of this nature that I think I watched him so closely for anything and everything. But my parents even remark about how advanced he seems for his age. I'm so thankful for that because when a doctor tells you your child could have faced severe retardation it kinda sticks with you doesn't it? When they performed the nuclear scan on your daughter did it even highlight a thyroid gland? My doctors were very specific about my son not taking his medicine with soy based formula, had to be milk based. They told me that he couldn't eat peanuts, etc. for at least 2 hours after he took his medicine. But my little guy does take his pill pretty good whole. His endo had told me in the beginning that they had a "sweet" taste. I gave him part of his pill the other morning in a bite of hash browns and he actually spit all of the hashbrown out and kept the pill in his mouth and sucked on it until it was gone. So I guess ole' doc was right about that!
I'm looking forward to talking to you more!!
When they scanned my daughter, they found no sign of a thyroid. The endo said that it is a sure sign that she doesn't have one. The tech that did the scan said, she might have one, but uust just isn't functioning. Since the scan detects the functions of the thyroid I still have some hope that it might be there. Endo said in about a year or so, he will take her off her meds, and see if her thyroid kicks in, and possible do another scan. I gave her her meds whole today, it worked great...thanks for the advice!
Talk to you soon.
That would be wonderful for you and your little one! I wish you the best and I'll keep your family in my prayers.
I'm glad that giving her the med whole worked for you. It is so much easier, isn't it? My husband and I always joke that even when my son is 30 I will still be calling every morning to see whether or not he had taken his pill.
Did you notice a difference in your daughter's hairline when she was newborn? My son's was very low. Of course at the time of his birth I didn't really think much about it because I fell in love with him at first sight! He has several "angel kiss" birthmarks in different places all over his body from his forehead to the base of his back.
Giving her her meds whole is working great.
There was no difference in her hairline when she was born...she didn't have any hair...she still doesn't have much. Everyone thinks she is a boy, even when we dress her all in pink and have her ears pierced.
My daughter also has several "angel kiss" marks on her forehead. She also had one on the back of her neck/shoulder area, but that one has gone away.
My little one has to go back to his endo on his birthday, of all days. What a great present to get a big stick in the arm for bloodwork! He's a little trooper though. Last time he didn't even care that the nurse poked him with the needle, he just got upset because she put the rubber band thing on his arm. I really don't think he is going to be very tall. His brothers are all fairly tall for their age. I am 5'9" and my husband is 6'2" so they come by it honestly. Talk to you soon! Oh yeah, about people thinking your daughter was a boy...my son has long blondish red hair and he has been called a girl more times than I can remember. Crazy, huh?
To bad your son has to go on his birthday. NO FUN! Last time I took my daughter to the endo, it took 3 people to hold her down, and two tries with the needle. It breaks my heart everytime. She is very strong for how tiny she is. The doctors are amazed by her. Are you planning anything big for his 1st birthday? It's only about a month away! I hope you and your family have a wonderful and blessed Easter!!!
I wish you and your family a blessed Easter also!! It is so hard for me to believe that he is soon going to be 1 !! This year has been a whirlwind!!! I always try to do extra special things for my boys' birthdays. I really get into the whole planning thing and cake making!! I haven't really decided on a theme yet, but I have a lot of ideas. What about your daughter's party? Oh yeah, took my son to an Easter egg hunt at my other boys' school on Friday. He really was NOT interested in the eggs at all, but loved all the attention everyone was giving him! I hope your little one enjoys her first Easter!! I'm looking forward to dressing mine up for church. If I did have a girl, she would be dressed in ruffles and lace from head to toe! LOLOLOL Have a great weekend!!
We are planning a pink and green princess birthday party. It should be lots of fun. Hopefully we have good weather that day. Here in Michigan you never know what the weather is going to do. (it's snowing right now, yuck!) We had a great Easter, she loved hunting eggs with her sister. Althought she was content with 2 eggs, one for each hand. I will confess, I dressed her in lots of ruffles and lace for Church, blue to match her beautiful blue eyes. She was the cutest one there!!!!! With her sister way for Easter break visiting family, she has really taken to watching the Doodlebops, she loved to dance around, and wiggle her butt and wave her hand in the air.She diffinately didn't get her good rhythem from me.
My little man has took to dancing too, though his only consists of bouncing up and down. My older boys have taught him how to wave his arms up and down when a song comes on. Very cute! I had all 4 of my boys dressed in pastel collared shirts for Easter Sunday. My little handsome crew! I am very proud of my boys and very blessed, more than I ever deserve.
We actually went to Michigan for vacation 2 summers ago. We went all the way to the U.P. and seen Tehquamen(don't know the spelling) Falls, etc. We stayed in a little cabin that was right on the lake. It was the middle of July, but we just about froze!!! I'm from Kentucky and it is so hot here in July, but we wound up bundling up as best we could on a couple of days there! My boys wanted to swim and their little lips turned blue!! They loved the huge bridge up there!
My daughter is 10 months old born 2 may 2007 she has congenital hypothyroisim but she wasnt treated untill 8 weeks by this time she was hypothyroid,she has a thyroid but it just doesnt work well enough.
Unfortunatley she is unable to do many of the things your little ones can, she cant sit or doesnt babble some of her responses are slow all this is under investigation for a possible underlying cause.
Its so hard trying to find anyone else who knows about congenital hypothyroidism and I am glad I have found other parents.
I'm so glad you found us! I will be of any help that I can possibly be. It' s definately hard to find others who can relate to this situation, I completely understand and am so thankful to have met a friend through this website, nholmes5 has made me feel not so alone and i hope to do that for you. I'm sorry for you and your daughter that her condition wasn't caught with a PKU at birth. My son's thyroid doesn't function at all and at birth he was already showing signs of hypothyroidism...low hair line, slow eater, long sleeper, etc. He goes back this month for his check-up.
Did the doctors give you any reason why this condition was not detected in her bloodwork? I wish you the best and am here for you if you need to talk. I'll keep your family in my prayers.
Welcome! I'm glad we have all found each other...I'm sure we can all learn a lot from each other, and hopefully make this whole situation go a little smoother. So...WADDI, can you tell us more about your little girl. If they didn't discover her congenital hypothyroisim at birth, then how did they discover it? Did the doc's have to do a nuclear scan? How about medication? What does she take? Since she has a thyroid that us doesn't work well enough. Have the doc's said if they think it may start working better over time? (That' what I was originally told, until they found out she just doen't have a thyroid).
It's amazing that all our babies are the same age. I think we must have been ment to find each other! Your little girls birthday, was my actual due date. Do you have any other children?
I'm looking forward to talking to you more!!
Hi, I was just checking some of your other posts about your daughter's condition and it really bothers me that a doctor would tell you that her hypothyroidism would not be responsible for her developmental delays. When my son was 1 week old he had his first dose of synthroid and my endo told me then that if he had not been treated by one week old he would already have some brain damage. I became obsessive, as I'm sure you are too, about finding out any info. on the thyroid. The thyroid stimulates the pituatary gland which in turn causes brain development and growth. I went online and actually found photos of a baby with untreated congenital hypothyroidism and from the description you gave in your other posts your daughter has these classic symptoms. I don't know if this is helping any or not. I just know how obsessive I have been since my son's condition was known and it bothers me that your doctors were not more persistant about your little one's low thyroid hormone levels. My endo. was very thorough and concerned for my baby's development to the point that his nurses even called me at home in the weeks after he began treatment just to make sure he was tolerating his synthroid and that I hadn't encountered any problems. I'm so sorry that you and your daughter are having to go through this and I can't even imagine the frustration you must be feeling. I'm sorry if I seem to be rambling on. Please feel free to talk to me anytime. God bless.
Hey! Just checking in with you! Hope all is well with you and your family. Can you believe our little ones will be hitting the big 1 soon!!?? We've found out that my little one loves the outdoors. Everytime the door is opened he starts reaching. He's a munchkin outdoorsman! Just a quick question...have you encountered any eating problems with your daughter? My son has almost completely quit eating in the past few weeks. I could literally hold in one hand the amount of food he has actually eaten in that time frame. I know that all babies usually go through a time where they really don't eat much, but I'm beginning to get a little worried. He has lost some weight, but doesn't seem to act tired or run down from it. Any ideas? Thanks!
Everything is great here, how about with you??? We had our first 50 degree day yesturday, we spend alot of time outside also. My little girl just loved it, she was a little nervous about the grass, she didn't want to touch it with her hands, but she loved to run and swing, and chase the cat and dogs!!!!! Regarding the low appetite...we have not had that problem here, my daughter eats everything you put in from of her, and usually some of our food too. She just broke through tooth number 3, so she's eating a lot more different things now. If I'm thinking right, if his levels are high, he might need to up his dosage of medication on his next visit (good thing that's coming up) that might cause a lose in appetite. I'd ask when you go in next. Hopefully this helps, have a great day.
Thanks for the advice, I will be sure to ask his endo. My boy is such a little guy already and I feel like he has definately lost some weight. Could just be teething too though, I guess. He has 4 big ones now! He had a really rough time getting his top, middle front teeth in. His little mouth looked absolutely horrible!! Right now he is running a fever. They always wait till the weekend to do stuff like that, huh? Hey, listen, I'm really thankful to have you to talk to. I knew the good Lord would send someone my way who could relate.
My son has figured out how to open and shut doors so now he shuts himself in our closet all the time and cries because he can't figure out how to get back out! Have a great day!! Talk to you soon!
so heres Halles story.
I had excess amniotic fluid for my last 16 weeks of pregnacy regular weekly scans and monitoring apart from that a normal delivery at 10lb 4oz.In hospital she had one chocking episode and was very sleepy. We took her home after two days as she had mild hypoglycemia.
Midwife came to do heelprick at 4 days old, we got a call the following week saying a repeat was needed as her thyroid test had come back abnormal.Test was repeated and we never heard anything else.
I began to notice she was jaundice and she was tested for this at one week old, levels were ok so we were sent home.It got to 5 weeks old when I took her to my doctors I wasnt happy that her jaundice was getting any better so he sent her to the hospital for a full blood test to see what was causing the jaundice.
I began to notice things wernt right many of the things I had been asking midwifes and health visitors about were just getting over looked,she was very sleepy not waking for feeds and sleeping as soon as she had woke up.,face and body very puffy and people comented on her tounge being large,her skin was dry her hair line low.
I then had a call from the endo at the hospital who informed me that her blood test for jaundice has brought up that her thyroid was not quite working as well as it should be and a repeat was needed for the following day.
Ok I thought but that afternoon enough was enough I took her to my doctors,My doctor was worried ,this baby is hypothyroid she said and all the relevant phone calls were made for us to go straight to the hospital.
Halle has had a scan and she does have a thyroid in the right place it works but needs a little help so she is on 25mg of levythyroxine per day.
I read everthing about it causing damage I was so worried I just wanted to know if we had caught it in time. Well things hav'nt gone to well so far developmentaly but we will get there. My endo just wont agree with me that she would have suffered any damage after 8 weeks with just a slightly low thyroid and thats as far as our story goes so far.
I must add her symptoms improved once she stared her thyroxine so i cant see how she says it didnt affect her.
Sorry if it went on and on but I just needed to write things down.xx
To be completely honest with you I think I would search for another endo. I don't know if that is an option for you or not. It's crazy to me that they would be so dismissive of the effects your little one's condition could have caused. It's great that your daughter has responsed well to the meds. Children are so precious and you're a great mom for supporting her. When my son was born his little tongue stuck out all the time and even now he will walk around with it sticking out. My doctor has told me that there was no way of detecting a thyroid problem through ultrasounds during my pregnancy because that was one of my first questions. They say there is no way of determining a cause. It's just considered a birth defect. I don't know. I was actually pregnant with twins but lost one of them at around 3 months. I'll always wonder if that played any role in my son's thyroid problem. So many questions!!! Bet you know exactly how that feels, huh? Thanks for letting us know more about your precious daughter and I wish you and your family the best. Please keep in touch! Talk to you soon!!
Thank you so much for sharing your story with us. I agree with possible getting a new endo. or at least a second opinion. Halle had all the classic symptoms from very early on. Have they giving you any indication that her thyroid may someday start working normally, and be able to take her off her meds? The fact that she has a thyroid, is a great sign. They seem to think my daughter (Hadley) doesn't have one at all. Sounds like your daughter has had a rough start at all this, but she could start catching up at any time, Children are very resiliant, she'll probable be a genius someday and put all our kids to shame. I hope you have found some comfort in knowing there are more people out there going through the same things, I know I have.
Hey ladies. Just a quick request...could you please remember my boys in your prayers. Their teacher/principle just passed away last night from cancer. My two 9 year olds have been with her since pre-school and my 6 year old has been with her for 2 years. They go to a small Christian Academy so it is more like a family and this will be the first true "loss" they have ever had to deal with. Thank you so much.
I just wanted to give u all a quick update of my little Hadley. She just had her blood work done last week, and althought the needles were very tramatic for her, her levels are right on target. She has to go see the endo in early June, i expect that to go very well also. She is very quick learner and loves to eat. It is amazing watching her grow knowing how lucky I am to have her in my family. We all love her and r amazed at how well she is developing.
Waddi, I notiiced on another post u mentioned your son had dry cracked feet. Did the endo say if this could be related to the meds or something. My little one has that problem too, but it doesn't seem to bother her to much. She loves running bare foot out side, i'm always afraid she will crack them open even more.
Thank u so much for all ur support! God bless u, and ur families!
Hi! Good to hear from you nholmes5 and that is great news about your little girl! My son seen his endo in April and his levels were right on target too! My son has the cracked feet and I did ask his endo about it, but he said it was not related to his thyroid. His pediatrician said she thought it was probably excema. As long as he wears sandals and goes barefoot as much as possible they stay fairly clear. It was great to hear from you and WADDI if you are reading this, please let us know how your little one is doing. She should be celebrating a birthday soon! Hope to talk to you both soon!!
My second daughter is 14 months old now and was detected with congenital hypothyroidism. She started her treatment when she was 33 days old.We had a pretty bad time like doctor advising about how dangerous the situation is. I cried for a month.She did develop really well after the medication. she is now on levothyroxine 50 mcg. She rolled over, crawled on bellies, now on knees...stnads up moves around supporting. Havent started walking alone. but there's time. her eyes looks a bit sleepy all the time. But dont know whether its in her genes. pls help me to share my worries so that i can be stress free. as you all know you cant discuss these matters to those who dont know about this condition much. thnks
my son is 4 months old...and was detected with congential hypothyroidism.from 4 months i have been crying each day for not able to talk to any one who knew of this.
my son has been taking levothyrocxine 25mcg from 2 weeks of his birth.
they didn't do any nuclear scan.
pls keep in touch to give support
Welcome, it seems his CH was diagnosed early enough that as long as his meds are kept regulated he should be perfect. I think we have all been though the crying, the wondering way, and blaming ourselves. But then you finally realize it just happens sometimes,and now the best thing to do is just make sure he is healthy and happy. Other them a little pill each day, he should have a wonderful (normal) life.My duaghter is now 18 months and is developing normally, (maybe a little advanced for her age, she acts more like a 3 year old).She has been walking since 8 months, and now climbs on EVERYTHING, she loves to help with laundry and taking out the trash, she tries to play on the computer and loves to color. So other them being a little Hyper at times, (which could or could not be from the meds) she is developing wonderfully and I'm sure your little guy will to.
How old was he when he was diagnosed??
Have the docs figured out if he does not have a thyroid or if his is just not functioning properly? a Nuclear scan might be able to tell.
By the way, can I ask when you are from?
If you have any question of just need some one to talk to, I will be happy to help you out. I know i needed lots of support when I first found out.
To "prassu" I'm glad you found this support group. I know it helped me to not feel so alone when my son was diagnosed at 4 days old. I know that the first months can feel alwful. I questioned myself everyday as did my husband because we felt it was something maybe we had done. But rest assured it was no fault of your own. Sometimes God gives us trials to test our abilities to deal and trust in Him. My son had the nuclear scan when he was 1 week old and it showed his thyroid had failed to move down his neck. It is way up under his chin.
To "nholmes5" hope your little one is doing great! My little Cole is doing fine. We had our first bout with a stomach virus recently and I kind of panicked because he threw up his medicine and completley missed a dose, but the doctor assured me he would be okay with one missed dose. Anyway I hope all is well with you and yours.
Feel free to talk to us anytime you have a question or concern and we'll do our best to help out!! God bless!!
Thanx for ur reply and support.
He was diagnosed when he was two weeks old.i really feel sad when we do the blood work every month. one question i wanted know is at what age can we say that he is out danger for mental retardation.and he is normal child.Though he is four months old he didn't rollover still,is it bcoz of CH. iam really worried how the coming years would be.
Since he was started on his meds early, you can expect him to be just fine. some kids just do things at different ages. My daughter didn't rollover until after 4 months, but then immediately started to crawl then walked by 8 months. So you can really never tell when they "should" be doing certain things. from what i have read and understand by the age or 2 to 3 years most of the critical brain development is complete. but i am sure if something was going to go wrong you would be able to notice before then. so up until 3 years it is the most critical time to have the meds regulated.
I completely understand that the blood work is horrible, but it will get better. As he gets older he will not need the blood test as often. we are currently at 6 month intervels. I'm sure it will never be fun to have the blood work done, but at least it's not as often. and it is diffinately worth it to keep our kids healthy!!
I agree with nholmes5. We are also at 6 month intervals for bloodwork, and I'll just tell you that my little guy has been poked and prodded so many times in his short life that he is gun shy when he sees a nurse headed his way. My endo told me at our last visit that I had better enjoy him little because the older he got the harder it would be to distract him from the inevitable.
You said you were concerned about your little one rolling over. We were concerned about my son's ability to walk because he would fall so much. It was like his little leg would just give out on him or he would drag his leg and that would cause him to fall. Our doctor sent him for an ultrasound of his hips and x-rays of his legs and reccommended he be taken to Shriner's for some therapy. Thankfully though he is starting to not fall as much. He has 3 older brothers to keep up with so he goes right along!
Have a great day!! Try not to worry about your little one as long as his meds are regulated. I promise you will be amazed at how quickly he starts to grow and excel!
i just wanted to ask of u give the med.do u give on a empty stomach and after giving for how much time do we need to wait to feed. i give my little one,med after two hrs of feeding and sometime wait for half an hr ,sometimes its not possible so i feed him.i was reading we should give on fully empty stomach and wait for 1 hr .i don't think its possible with infants.
My endo never told me to give my son his meds on an empty stomach. Matter of fact when I first started giving it to him I would crush it up and give it to him mixed with his formula with a med. syringe. As he got older I have always mixed it with his food and now he just takes it whole and chews it up. There are certain foods that you should not give to your child within 2 hours of having his medicine because it blocks the absorbtion. My endo said not to give peanuts, peanut butter, soy, peaches, cabbage and other veggies related to the cabbage. He said that after 2 hours it would be fine, but not until. Personally I have never been concerned about him having his medicine on an empty stomach and he has progressed wonderfully.
I agree with colemomma, i have never worried about her taking her meds on an empty stomach. I know that is what the docs say,but it is almost impossible for her to wait that long without something in her stomach. I do know that they should not have anything with lots on iron in it, (like iron enriched formula) because it will block the absortion. i do however make sure she takes it at the same time everyday. and she is also taking her pill while (Come to think of it I have to fill her perscription today) I think the docs also recommend the meds be taken in the morning, but it works better for us if we give her hers at night, and all seems to be going great.
i heard we should give on an empty stomach and also wait for one hr after giving.i am crushing and mixing with breast milk.my endo said it was ok to feed after giving med but when i see over the net ,it says all the above rules.so little concerned,even when i called the doc office ,even nurse said the same waiting rules.i give my son only in the mornings mostly at the same time and
what kind of formula did u use colemomma,bcoz i read not the formula which kinds iron
bcoz iam thinking to start formula for my son.
I used Similac Advance. My son's endo recommended it because it is basically soy-free and he did really well on it. No upset tummies or anything. I will definately keep you in my thoughts and prayers because I know how stressful and worrisome that first year is. Heck, it still is to a point. I have so many in my family that are concerned for my son that they ask me every day if he's had his meds yet and if I happen to say no it is automatically, WHAT! But I am so thankful that he has so many people who love and care for him. If it weren't for their support during those first months I would have probably lost it!
I'm so happy that you have found this website. It is the best and you will meet some really great, caring people. It is nice to know that you are not alone. How old is your daughter and when was she diagnosed? My son was diagnosed at 4 days old and had his first meds by 1 week of age. He is a gift from God and I am so thankful. I am looking forward to hearing from you! God bless!!! Happy New Year!
My daughter was dx'd at 7 days old with congenital hypothyrodism also. She was put on snythroid and monitored monthly/weekly. It was a tough first year with all her eating problems. After that it was smooth sailing. She was reading by three years old. By the end of elementary school she had received President Bush's Presidential Educational
Award. Middle School brought Honor Rolls. Now she is in high school and making highest honors. She is completely fine other then she has to take a pill each morning and see her endo doc 2 times a year. Feel blessed. There are sooooo many other condtions that our children could have to endure. This is an easy fix!!! Good luck!!!
God has truly blessed you and your little girl. Even though she is in High School I know she is still your little girl. My little guy will be 2 in April and he is also very smart. I wish you and your daughter the best of luck especially since college will be coming over the horizon for you soon! God bless!
My son just turned 2 and he was also born with hypothyroid,he was diagnosed at birth and been taking his synthroid since he was a week old,he walked when he was 14 months but everything else is real delayed he still dosent talk or say a word,he has all the signs of autism,hand flapping,no speech,seems like he is in his own world all the time,his endocrine said if he takes all of his medication everything would be ok,which i believed until i started going to his speech and therapy classes and came a cross another little boy a year older than my son and he had also all of the same characteristics of autism and was taking synthroid since a week old,when talking with her and his speech therapist they told me that kids born with hypothyroid have the same charactristics as autism and they treat them the same with therapy,when looking at the other little boy they looked so much alike they both had a bigger forehead,i was wondering if anyone noticed this in their toddler,does anyone have a child born with hypothyroid 2 and up have these same things going on,his endocrine tells me their must be something else going on,but when i came across this other little boy im starting to wonder.
Hi im 24 yrs old. I have to boys one who is two and my second is 1week and 3 days . He has Congenital Hypothyroidism. We started him on his medsat 1 week old he is taking levothyroxine. Im so scared and just want to cry every time i look at him.. He looks fine.....every one tells me its going to be okay and i need to stay strong , but its so hard to do that when i know that there is somthing wrong with him and that there are lots of things that can go wrong with him.HELP!!!! When i give him his pills they dont disolve as fast can someone help me ... i breast feed him when giving him the meds. and his next feeding i give him formula. Im jus so worried its like im stuck in a bad dream.
crush the pills real good until they get real powdery,didnt mean to scare you with my posting,ive seen other posts with kids that were born with hypothyroid and they seem to be ok,maybe mine is a rare case im not sure,it is like a bad dream, i still cry every day
Thank you, im sorry to here about your child. Do they think that it has to do with his CH? When did you start to notice him diffrent? Please stay strong for your child. I no its hard to do that and not cry... but your kid needs you. I still wanna cry but this is very new to me and thank god i found this web site it has really helped me. im still scared but not as scared. need to talk you can count on me
his endocrine doctor told me it shouldnt have anything to do with his ch as long as hes been taking his medication everyday,which he has,i noticed when my son was about 3 months old he always had this glaze in his eyes i thought it was due to the synthroid,i am in contact with the other mother thats son has hypothyroid to in his therapy class,and they act very much the same way and thier foreheads are much wider than normal for some reason,his endocrine told her the same thing as long as he takes his meds everything should be alright,i hope everything goes well with your son,if u need to talk or have any questions about his meds just let me know,thanks for your response.
I know exactly how you are feeling right now. I cried for the first month of my son's life. It's very helpless feeling. When he was born I was amazed because he slept for 6 hours at the hospital before eating. I thought he was just going to be a very easy baby. My mom commented that his little eyes didn't look right. She said they had a glazed look to them. He also kept his little tongue stuck out all the time. After he started his synthroid it took about 2 months before he came around. His endo told us to take a spoon and crush the pills, but I never could get them fine enough so I went to the pharmacy and bought a pill crusher and it done the trick. It made the pill very fine and I could get it sucked up in a syringe with his formula better. When he got a little older I would mix it with a bite of cereal and now that he is almost 2 years old he chews it up. The synthroid actually has a sweet taste to it. I will keep you and your family in my prayers. I never thought that I would ever get used to having to give him medicine everyday, but after awhile it becomes normal, like brushing your teeth everyday, you just do it. God bless and congratulations on your new baby boy!
My prayers are with you and your little boy. I cannot imagine the frustration you must be feeling. I hope that they are able to finally help him the way he needs to be helped. God bless you and your family.
Just a quick update: My son went to his endo yesterday and he said that he seems to be doing great. The blood draw is becoming more traumatic for my son the older he gets. He just doesn't understand, but they gave him a toy so I think that soothed the pain. The lady that draws his blood is amazing and definately has a gift for helping children. God bless!!!
Last week my daughter was diagnosed with congenital hypothroidism, she's now 2 weeks old i;ve done nothing but cry for the last week i keep thinking why us i done everything right in my pregnancy.
everyone keeps telling me she'll be fine once she has her meds everyday but i just cant stop worrying that she wont delevop right or she might have autism.
I was glad find this site to see that other mothers have been through the same thing ,but right now i wish my daughter was 5 so i knew how she'd develop which is awful wishing her life away. but i just feel so stressed and upset!
My husband is great and he thinks really postive and would love me to think the same but i just cant let myself believe she'll be ok incase she's not.
Just wondering did anyone else feel like this ., i'd be greatful for advice.
I can honestly tell you I felt exactly the same way. My son will be 2 in April and the first months of his life were so stressful and full of worry, though my endo and all my family assured me he would be fine as long as he took his meds everyday. I prayed constantly I would hold him and cry all the time. I knew that I had taken care of my body during my pregnancy and felt I had done everything right, but he was still born with this defect. It is not your fault. It took me quite awhile to come to this realization. My little guy is sooooo smart and I am so proud of him. I don't think he is going to be as big as his brothers are, but I am so thankful for everyday with him. He has taught my whole family a huge lesson in appreciation of everyday and every miracle.
Does your daughter have her thyroid or is it completely absent? My son's thyroid failed to move down his neck. Through the nuclear scan they determined his is way up under his chin which means it will never function. I am so thankful for modern medicine, because in past times these children had no hope.
Try to enjoy your daughter and trust in the Lord that she will be okay as long as she gets her meds everyday. But believe me, the concern will never go away. To me just the thought that my child must take medicine everyday for the rest of his life is something I think about on a regular basis. But I also can rest assured that he will be able to enjoy the rest of his life.
Best of luck and God bless! Congratulations on your baby girl!
Please don't let this waiver your faith in the Lord. Sometimes we are given challenges to see how we rise above them. My faith has saved me during all of this. God has used my little guy to open all of our eyes to so much more. He is a blessing to everyone he touches. I will keep you in my prayers and please believe that God has a plan.
My son is extremely smart and has actually met his milestones sooner than my other 3 sons did at his age. He is already talking in sentences and he started walking at 10 months. He colors, dances, sings, loves to look at books and pretend he is reading. He will definately be started school on time and I will probably start him in Pre-School when he turns 4. We have an excellent christian pre-school in my hometown.
As I said before, please stand strong in your faith. When I was pregnant with my son I actually lost his twin. I thought that I had miscarried all together, but when they did an ultrasound they found that I had in fact lost only one baby. The miracle was that I didn't know I was carrying twins and was devastated when I noticed the signs of a miscarriage. I didn't tell anyone because I didn't want it to be true. So on the day of my ultrasound I was so thankful that I was going to still be able to have one baby. I already have one set of twins who are fixing to turn 10. Anyway, when my son was born with this condition, my mom told me that maybe God took the other baby on home because there may have been something more serious wrong with it. You have to look for the miracles and I look into the face of one of mine every day.
Hi, My name is Katie, our daughter Emma was born October 2007 with cong hpothyrodism, she was born without a thyroid! I am so glad to have found you guys!! I was looking for a site like this!! She has lab work once a month and is on synthroid 37.5 five times a week and 25 2 times a week. Today they just found a heart mummer? Have any of you guys heard of this? I googled it and they said that it goes hand in hand? Her levels where a little high this time her TSH was 9.5 which has been the highest since she was born which it was 378.9. Any tipes?
Hey Katie, glad to meet you! My son's endo detected a heart murmur on his first visit at 1 week old. He monitored it on every visit, which was every month at first. He was seen by a pediatric cardiologist and they decided that it was one that would fade away as he grew older. He will be 2 in April and it is still detectable, but his doctors don't seem to be concerned about it. My son is on Synthroid 50mg every day. Hope this helped! I look forward to talking with you again! God bless!
Hi just wanted to update every one my son is now 2 mo old and he seems to be doing great.Thank GOD! I just want to tell every one not to give up hope. Your child will be okay, just keep giving the medson time and keep hope.My sons levels at birth were 489.8 and now its at 5.. so his meds are working great.I hope everyone is doing good and hope your babys are well.
Just looking some advice , my daughter is now 16 weeks and soon i will be starting her on a sppon feed.
I give my daughter her meds at around 6.30pm every evening , i'm just wondering as i've heard that iron can affect the absorption of the meds , is this iron in food like veggies etc,or is this just thing like iron supplements.
Can anyone tell me how they give there kids there meds , i've from a small country village in Ireland and dont no anyone else with this and the doctors are not much help either to be honest and im worried i could give her something food wisw that might affect her meds working.
This makes me feels so upset everyday thinking of my daughter with this wondering is she goin to be ok.
im drained from all the worry!
So any advice on how you give your kids the meds would be much appreciated.
Hi, my son just turned 2. My son's endo told me that he cannot have the following foods within two hours of taking his medicine. He is on Synthroid 50mg. The foods are: soy, peanuts, peanut butter, peaches, cabbage, and anything in the cabbage family. The only ones I have been concerned about were the peanuts and peaches because my little guy loves fruit and nuts. I was told that they would block the absorption of his synthroid. After the 2 hour period he can eat anything he wants. Also, my endo told us that since he has hit the two year mark that they are no longer worried about his brain development. Thank the good Lord! So that is something you have to look forward to. When I started spoon feeding my son I just crushed his pill up fine and mixed it with something I knew he would definately eat. As he has gotten older he just chews it up whole. I hope this has been helpful to you and I wish you and your little one the best of luck. I know it is hard not to worry because this is your child, but I promise as long as your daughter is getting her meds and shows no significant developmental delay as of yet she should do fine. Children are true miracles and I can promise that you will learn more from her than anything in life. Happy early Mother's Day!
Thank you for your reply , what great news to here the endo team are no longer worried about your sons brain development you must be thrilled.
Can i just ask do you give your son meds at a certain time of the day example morning or evening , because my daughter will be soon getting her spoon and i will be giving her cabbage etc for dinner as i dont want to take away good food from her diet , but as i used to give it to her at 6.30pm and her dinner now will be fallilng around that time do you think if i pushed her meds to 8pm just before her night bottle would be ok .i've heard its best on a empty stomach and to give before breakfast so many different ways but night time suits us better i've tried ringing my endo nurse but she's getting a bit annoyed with me to be honest as i've asked her so many questions.
But i so scared that i'll do something wrong or give her meds wrong that i could be the blame for her not developing right.
I'm missing out on my daughter from all the worry and don't get me wrong i love her to bits i really do but so frightenened of the whats going to happen.
Thank you so much for your kind words , you son is blessed to have such a good mom!
To be completely honest when my son was newborn I was very careful about what time of day he got his meds, but after speaking with his endo he assured me that as long as he got it that day that he would be fine. I have given it to him on an empty stomach and on a full stomach and he has done wonderful. I am careful about what he is eating at the time because of the foods I mentioned before, but other than that all I worry about is him getting it everyday. We have been blessed with a wonderful endo who is more than willing to answer any question I may have. He has always been very reassuring and honest about my son's progress. He has even helped me get my son's meds at a more reasonable price. I hope this has been some help to you and I truly hope your worries will subside so you can embrace the joy of your little girl.
Do you notice any delays in growth so far? I had many concerns and worries when my son was as young as your daughter, but so far everything has worked out according to the Lord's will and I am so thankful. I will keep you and your daughter in my prayers and I honestly feel like your beautiful little girl will grow up to be a very bright child!
Hi. So happy to find this site. My daugher has congenital hypothyroidism and is 4 months old. She has an ectopic thyroid. We were shocked when we got the call from the hospital a week after she was born that her newborn screening showed that her TSH was high and we had to go to Children's Hospital the next day for a scan. She appeared normal at birth and was gaining weight,etc for the first week of life. They did a scan and blood test and started her on levoxyl right away. The scan showed a pretty sizable thyroid tissue behind the tongue meaning she has a thyroid but it did not drop like it is supposed to in the 12th week of pregnancy. I have 4 older boys and they are all healthy. Since I have older children, I do look for milestones and I can tell you she is doing things before they did. I just pray everyday. Thank God for the research performed in this area. They now know what proper dose to start them on and the proper levels to look for. If it detected early and kids normalize within 2 weeks, it is a great sign. The endo has been great. At one time, they had lower acceptable range numbers and some children with the ectopic thyroids were missed because their T4 were in range. I've read so much and questioned so much. Found a lot of great articles from Mary Shomon on the condition. I have read that it can be a combination of environmental and genetic factors. There is even talk about chemicals in the lettuce we eat and certain herbicides, etc. I am a runner and health nut. I eat a ton of salad. They say the condition is sporadic but they really don't know. Thanks for the forum.
I feel the same way you do about the blessed advances in technology and medicine. It is definately a God send. I'm happy to hear that your little one is doing so well and look forward to talking with you again. God bless!
I too have a high school (16 year old) daughter that has been on synthroid since she was a week old. Her thyroid never developed. I would love to talk to others who have teenagers since our experiences are different from when she was younger. For those of you with babies it sounds like we have all dealt with the same emotions and issues. Our daughter is wonderful and doing very well. She has grown as she should, does very well in school, plays sports, has friends and lives life on her terms! You will get used to the routines and become experts and comfortable with this. There are one thing I have learned over the years that might be helpful. Synthroid (and I would assume all other brands) binds easily to certain foods and drugs. You all know that soy is an issue. If you make a change with giving meds. with/without foods you should have bloodwork done to see if dosages need to be adjusted. We had a very bad episode of hyperthyroidism when our daughter was 12 and started taking singular with her synthroid before school. It was scary and she was a wreck but once we figured it out and stopped the singular and pulled her off her synthroid for 3 days she was back to her old self and we got back on our normal synthroid dose. I make a point of never giving her synthroid at the same time as any other medicines and do not give other medicines (or even vitamins) unless absolutely necessary. We are currently dealing with another episode of hyperthryroidism because she has a virus that has resulted in no appetite and a full feeling in her stomach so she has greatly reduced her eating making her synthroid more metabolized. Since puberty her blood numbers vary more than she did as a baby/child. We have dealt with more subtle symptoms over the last few years- temperature tolerances, heart palpitations, slight weight issues. It is hard to figure out what is thryroid and what is teenage. It would be good to compare notes with other families of teenagers.
Thanks so much for posting. It helps to hear from parents with older kids with CH. Everyone says things are going to be fine - but it is good to hear actual experience. My daughter was diagnosed with an ectopic thyroid at 1 week. She is 5 months and doing great. I have several questions for you. I know each case is different. Did you find that the dosage stayed pretty consistent up until puberty? Was there very little problems until then as far as stability with the numbers? I have 4 older boys. This is our only girl. I know it is tough in the teenage world. Did you have any problems with your daughter feeling funny about taking the thyroid medicine? Does she tell her friends? The endo stresses that it is not medicine but pure thyroid hormone that they are taking. Therefore, it is not like they are taking something that should alter normal processes - keeping the values in range is the key. When you say subtle weight problems, does she have trouble taking off a few pounds or being hyper when overmedicated does she lose too much? I asked the endo about weight and he said just so we keep the numbers in range - weight is a factor of genes and diet/exercise. I read so much junk on the web - it is hard to know what to believe. Is your daughter good at math? How is she at sports? My boys are really good at sports and school. Hope she has the same opportunities that they do. Any advice/comments is really appreciated. Thank you again.
Another quick comment. I have a friend who grew up with a girl who had CH. She was born without a thyroid and diagnosed at 2 months. The girl was very smart and thin growing up, participated in sports, went on to an ivy league college, married, and has healthy children. My friend has lost touch with her though.
Thank you for posting about your daughter. My son is now 2, but I am always wondering how he is going to do the older he gets. His dosage of synthroid has never changed, but I think that has to do with the fact that he has not gained very much weight. He is a little guy with a lot of spunk. If you don't care can you please tell me what kind of symptoms your daughter had when she was having the bad episode? I would be interested to know what to expect if it should occur. Thank you so much for sharing and I look forward to talking with you more.
I'd be more than happy to pass on our expereiences. When my daughter was a baby the internet was barely up and running (can you believe that?!) so I never had anyone to talk to. My daughter was a very big spitter upper when she was a baby so I had to give her her synthroid on an empty stomach. During that year she required less medicine than the "norm"- that resulted in more blood tests and lots of tweaking but as she got a little older and took her med. with breakfast her dosage came right in line with what the endocrin. predicted based on her weight. It got to a point where we could easily chart and predict her dosage as she grew. There was a time though that I had to adapt a routine of having blood tests done before her medication. If I did it soon after her pill the numbers were confusing. All through childhood I stuck to that routine. I've thrown that out with the teen years though. If I or she feel she is high we do bloods soon after her pill, If low right before. My daughter did not mention her condition to friends until she was in 6th grade and missed a few days of school because she was hyperthyroid. Since then she mentions it to friends whom she has become close to when she is dealing with varying levels, blood tests, etc. or friends who are diabetic and share the same doctors. It is no big deal to her- not usually a topic of conversation. Occassionally she balks about having to take her meds (I'm sure all teenagers do) but a few years ago her doctor told her a story about a patient he had (whom he used in a presentation so he had permission to discuss) who was not diagnosed for a long time so he had severe symptoms. He showed her photos of this boy with huge bald spots and very uneven weight gain. All I have to do is remind her of this and she pops her pill! Smart doctor- I bet he does this with all his teenage patients! As for the wieght issue as a teenager- she was normal weight until 2 years ago then she did put on 20 pounds over the last 2 years. I do believe some of this had to do with her synthroid levels being off/on. A year ago the doctor wanted to lower her dose but her weight increase kept him from doing that - looking back on this that was a mistake. Now that she has be very hyperthyroid and eating less because of a bout with gastritis she has rapidly lost 25 pounds. We are still trying to get her levels in range- she has been off her meds for 4 days and her numbers are coming down- very slowly but coming down. She will be off meds for at least a week- something I could never envision when she was a baby. Weight gain in the teen years - especially for girls is common but I do know that her fluctuating levels have played a role. I also question the whole hypothryorid weight gain/hyperthyroid weight loss idea. I think taking synthroid and balancing female hormones make it more complicated than that. My daughter is very good at math. She has been in the highest level offered most of her schooling. Her math brain amazes me- although I doubt she will use it for a living she also has an artistic side to her and is leaning towards graphic design right now. She has played soccer since she was 4 and is fairly good at it. If she wanted to pursue it she could probably make a D3 team in college. She has also played field hockey, basketball and lacrosse but soccer is her true sport. As you can tell she is growing up wonderfully and although her hypothyroidism is something she does have to deal with it doesn't usually affect her day to day life. She has lots of friends, loves being in the High School, activities and a good relationship with her sisters (one older, one younger) and us. Thanks for the note about your friend's friend. I know my daughter will be successful in whatever she choses in life but it is reassuring to hear about others and very reassuring to hear about someone having healthy children.
I'm so glad you little guy is doing so well. 2 year olds are so much fun- I always found 3 to be the harder year. When my daughter was turning twelve she was dealing with asthma/allergies so we started her on Singular. She took in the morning with her synthroid. Within a few days she would come home from school complaining that her ear was "funny"- she did tend to get blocked ears so I ignored it. Then her other ear started to be "funny" everyday after that it got worse and worse until she literally walked around with her hands covering both ears all day long- at school, at parties- she would not take her hands down. This started getting bad on a Friday and lasted over the weekend- as annoying as it was it didn't warrant an visit to the ER. At the same time she was beginning to get agitated (which I assumed was because her ears were bothering her). By Monday she was not herself at all- agitated, not eating much, said her stomach was not right, hands over her ears- her personality was totally different. I finally decided it had to be some weird reaction to the Singular (which when originally marketed was touted as the allergy medicine with NO side effects- now it has some kids commiting suicide). I took her off of it but she continued to get worse- more agitated. Her ears were driving her crazy. The first pediatrician we went to was horrible- no bed side manner and pooh-poohed my theory about it being the Singular, he yelled at my daughter for not wanting to put her hands down- bad, bad scene (I obviously never used him again). The second one I went to was much better with her and was able to look in her ears and saw no problem. He said it was probably just a virus. Nice person but no real help. Then it hit me that aside from the ears all her symptoms were what I had read about hyperthyroidism- somehow the singular must have binded with the synthroid and metabolized more of it than when it was binding with the breakfast food. every day she was getting more and more hyperthyroid. Even when I stopped the singular she still took her synthroid and now it was on an empty stomach because she did not feel like eating- again making her hyperthyroid. I called Merk and they were very interested in my story but could offer no information since they never tested singular with children on synthroid. Her endocrinologist immediately agreed it was an interaction and we stopped all synthroid. It turns out a little known symptom of hyperthyroidism is ringing in the ears. 24 hours after being off her synthroid her one hand came down 48 hours later her other hand came down and we had our daughter back to her old self again. It was a stressful week but I learned a lot from it. Never, ever give synthroid with anything else, if my daughter stopped eating breakfast for a number of days (stomach virus, etc.) I skipped a dose, and pediatricians are fine with normal kids things but you need to do your own footwork when it is outside the box. This current bout of hyperthyroidism we are dealing with now is different in that she has been a little high for over a year- depending on when the blood test was taken. For the past year I have noticed she seems colder than the norm, her hair seems to fall out more at times, she had weight gain (which doesn't go in line with the consistent hyperthyorid symptoms but then she was not consistently high). All of these can be "teenage" girl issues so I didn't push the issue until 5 months ago she started having heart palpitations and her periods are off (one month 7 weeks, the next 20 days). We reduced her dose at the same time she started having a gastritis issue (which she has never had before- not sure if that is all connected). This time her face changed- her cheeks looked sunken, her eyes were off- no sparkle and not the shape I was used to. She literally was crying for us to fix her. I remember that sentence from when she was 12 so I stopped her meds. immediately (I was not too surprised though since she was taking the meds on a very empty stomach). Blood work confirmed the hyperthyroidism. After 36 hours her cheeks filled out and her eyes sparkled again. She did say she had some ringing in the ears but it was not the predominant symptom by far. She did have some palpitations also. We put her back on the meds after 3 days off and again after 3 days on I could tell by her eyes and face that she was hyperthyroid again- blood work confirmed it so now we are almost a week off and waiting for the bloodwork to show levels significantly dropped before she goes back on a very low dose. I hope you don't mind the long winded description but entire experience of dealing with doctors and the thought processes involved is what I learned the most from.
Thank you for taking the time to share your experiences with your daughter. It's impossible not to worry about our children when dealing with something so unexpected, but it is so nice to have others who can relate to your situation and give some insight as to what to expect from the future. I look forward to talking with you more and may God bless!
Thank you so much for sharing your experiences. It really means a lot. Since you've been through this and your daughter is already a teenager, you are one of the few that knows what we are thinking/feeling. The internet is both a godsend and sometimes it creates extra worry. Talking to the endo of course helps but it does feel good to talk to people in the same situation that have lived through it and are doing fine. I've learned more than enough about T4 and TSH and read up on all types of studies. I have a technical background so it is my nature to research and research...Even though the endo answers all of my questions and assures me that with the latest advances in medicine, my daughter will be fine, it is great to talk to someone whose daughter is fine and already 16. It is interesting about what you said concerning her blood labs and giving her the thyroid med either before or after the blood draw depending on if you think she is high or low in range. I always give my daughter her dose first thing in the morning (although my endo says it doesn't matter what time of day we give it to her just so we are consistent how we give it to her so the dosage is correct). No soy of course and giving it to her on an empty stomach is best. We have to wait a half hour before she can eat after giving it to her (we mix the pill in about 1 tsp of water and give it to her by a syringe.) Sometimes she wakes very early for a bottle - then we have to make sure we wait at least an hour before we give her the thyroxin. I always get her labs done in the morning after my other children have left for school. Since I give her meds in the morning, she always has the blood drawn after she takes her pill. I did wonder if it makes a difference or not to wait to take the meds or not as far as readings. I guess a mother's intuition knows if they are acting hypo/hyper and whether to wait on the meds till later or give it in the morning. Did it make a huge difference or only subtle with the numbers? Did the endo recommend to wait until after the blood was drawn or did he think he didn't matter? You are the number one advocate of your child. We are still tweaking my daughters slightly - after one week of an initial high dose, she was hyper and they had to lower it and we are still slightly lowering it so TSH is not too low (possible bone loss later in life if TSH is inhibited.) However, it is only getting tweaked slightly. She will be 6 months at the end of the month. We have getting blood draws monthly. I read where they will start being every 3 to 4 months and after any change in dosage. We will see - she has an endo appt. towards the end of the month. Thanks again for sharing your info. You can tell that you are proud of your daughter. She sounds like a great teenager - smart and sporty. Just to let you know, the person I know about that had CH was a twin. Growing up, my friend could not tell any difference between them as far as grades, sports, build, etc. It does make a great study comparing twins - one CH and one not. It gives reassurance that things should be fine. Thanks again. I thank God for people like you taking time to help the rest of us through sharing what you have learned/lived through. Our children are everything. Look forward to hearing from you again. Take Care!
Thank you so much for your stories , my daughter is 5months old now and to be honest i'm only barely coming to terms that she has CH she is our first born and i felt awful knowing something was wrong, i no that sounds bad as it could worse and i love my baby so much i really do.
You seem like a wonderful mom and that you have a daughter to be proud of.
the women on this site are wonderful and have all experienencied the same feelings and reading people messages on this gives me courage to know that hopefullly she will grow up ok. i'm just wondering when you say soya affects her meds is that more like soya based things like milk etc ,as a lot of food in the ingredients section says it contains soya and im just wondering will everything that contains it even affect her meds.
It seems like a constant worry everything i do or feed my daughter i worry about it, i just want to make sure im doing my best. i'd appriecate any advice you have.
It makes me feel better to connect with all of you. You are going through what I once did, with the same questions and concerns. Since we are dealing with this current "episode" with my daughter I am finding it comforting to read your posts and remembering I have had these emotions once before and things have always worked out well. My daughter's levels still have not dropped after 7 days off her meds. but she has not eaten anything in 4 days so I have to believe that the two are related. She has started eating again- still dealing with the gastritis though. She is in range- high but in range (except TSH which is 0.04 but my endo tells me it can take 2 weeks for this to respond). I have found that synthroid has a half life of 6-7 days but can be 9-10 days so I am hoping that these numbers start dropping dramatically with her next set of labs tomorrow. I too have a technical background so I can relate to the research you are doing (and currently so am I to the nth degree!). It is both a blessing and a curse! In answer to your question about the difference between taking the synthroid before/after the blood test when my daughter was 3 her T4 was 14.2 when taken right after the pill. We kept the dosage the same and retook labs a month later before her pill and the number was 12.5. It was a year before we upped her dosage so had we reacted to the high T4 it would have resulted in "tweaking" back to where we started. There were 2 times when she was 1 to 2 years old that we actually went to an alternating dose schedule 35 mcg one day 50 mcg next- so know that that is an option if tweaking doesn't always work. The idea of changing the times we test was the endocrinologist. We are fortunate to live by one of the top children's hospitals in the country so we have a very strong knoweledge/expereince base of doctors - although living 24/7 with a child with CH and a mother's intuition does sometimes put me one up on them! The first 3 years a CH child's life is monitored so closely that I would be surprised if you see symptoms of hypo/hyper- the labs are the best indicator at this age. Yes, you will soon go to once every 3 months and then once every 6 months after the age of 3. I would never go less than once every 6 months until adulthood. By the way- you may not be here yet but somewhere around their first birthday getting blood work done is a nightmare for the kids. Talk about stressful- they hate it, mom's dread it. My saving grace was the lab at this children's hospital was so experienced we got through it without it being too bad. I did try to use a much more local facility and save dealing with city traffic and commutes-but that was a nightmare. 2 seperate facilities - they were not good with screaming/squirming babies. I quickly went back to the city. These labs have changed so much over the last 16 years that maybe all facilities have well trained lab techs but ask questions now so that you can have a plan in place for that year between 1 to 2. At 2 years old the kids tend to be fine with it. I was told that by a tech at the hospital and they were right on the nose with my daughter.
Thanks for your comments and support. I can still remember my emotions when we first found out about our daughter. You will come to terms with this whole thing but it sure does play havoc with our emotions- especially for brand new moms who are dealing with the whole life change of having a child!
Soy milk is by far the biggest thing to avoid but I do agree with you that many, many products now contain soy protien and that may also have an effect. If the soy protien is bound to something in the product then it will not have as much as an effect but there is no way of knowing how much each product containing soy will affect the synthroid. I do personally believe it has to have some effect so I have one rule of thumb with my daughter- fresh fruits and veggies (or frozen) most of the time. I try to avoid all prepacked meals. However snacks are another thing- kids like snacks. I read labels and try to minimize the soy when possible- and have taught her to do the same. Bottom line is still to keep an eye on the lab results- that is your best indicator. Don't make yourself crazy over it- there is only so much control we have. The first three years are the most important and kids do not have that much diversity in their food choices in these early years so you can minimize the soy additive. After that do the best you can- it will be fine.
Your posts have been so helpful. I feel like we have a lot in common in how we view/approach things. We also live near a top Children's Hospital in the country. When our newborn test results came back, we were sent the next day to Children's. There is comfort in being fortunate to have a Children's Hospital close. At least I feel that when I ask the endo questions, he has been doing this line of work for quite some time and works at a top notch hospital, it should be credible. Of course, you still question and research everything. We are fortunate to live not too far from the city so the commute is not bad. I ask him a ton of questions everytime I go and he is good about answering my concerns. Face it, he has no reason to lie. I find that because I am analytical, I always try to find out "why". I know the important thing is making sure that my daughter has a healthy and happy life but I can't help wondering what went wrong. However, because I have 4 other children, I do see a lot of kids around that have more major problems that can't be fixed. I also have a friend whose child has diabetes and has to get injections daily and kids that have PKU in the area. Who knows maybe with all the thyroid issues out there, they will find a way to take a self-regulating pill. Thank you for the warning about the blood draws. Luckily, the Children's Hospital has satellite locations in the suburbs where blood draws can be done. They are used to dealing with children and hopefully things won't be go too badly as she gets older. As far as the tweaking, they are alternating her between 37.5 mcg and 25 mcg. Initially, we were at 50mcg to shoot the numbers to the high range of normal as is the guidelines for initial dosing. Since this resulted in hyperthyroidism, the dose was lowered. Since she has an ectopic thyroid (lingual-behind the tongue), it is producing thyroxin, just not as much as an infant's should be. So many people I know develop hypothyroidism later in life. One of my friend's developed it before being married. She has a healthy baby boy - just have to go to the endo more often during the pregnancy. It makes sense that female hormones would making dosing more difficult from a metabolic standpoint. Hope things are going well for your daughter and her numbers are back to normal. Let us know. Thanks again.
I've just been reading some of the earlier posts and I was surprised to see the question about heart murmurs. My daughter had a heart murmur that came and went from the time she was born. By the time she was 10 the pediatrician wanted it checked out by a cardiologist. He did find a cause for the murmur- a slight stenosis (narrowing) of the left pulmonary artery- another congenital issue. The endocrinologist said it is rare for a CH child to have another congenital issue and the cardiologist said it is rare for a child with this type of stenosis to have no other cardiac issue- our children are "miracles"! Fortunately for my sanity this condition wasn't investigated until she was 10 and the heart has pretty much grown all it will by 8 so other than the initial testing we just do an occassional follow up EKG. If they had detected it earlier we would probably been monitored more closely. Also fortunately there is no affect on her life/lifestyle. She is not restricted from activities and needs no extra care other than the occassional EKG. When she developed heart palpitations from the synthroid we did have to run her through cardiac first to make sure but they cleared her. Some children do require antibiotics before dental work but I think that procedure is losing favor among the medical community- we did not require it. Being a mother I am a little extra cautious with sore throats- since my dad had rheumatic fever as a teenager- but other than that it is not that much more to deal with. The only "result" of this is that since she has 2 congenital conditions any thing that is out of the norm is checked fully- i.e. slight curvature of the spine- we go for ortho workup (it was fine!). I'm sure that will be a topic of discussion with this GI issue we are currently dealing with.
I am curious about your comment regarding the ectopic thyroid. My daughter also has a small piece of tissue at the base of her tongue but it does not produce any thyroxine. Maybe it is dependent on the size of the tissue. We have gone around and around this discussion as an explanation as to why her numbers will not come down but our endo. feels there is no way that she is producing thyroxine. I think I will have everyone reread the original report from 16 years ago. As of 11 days off her meds. the numbers have not moved- she is still slightly hyperthyroid. I am very concerned about what is going on - she has pretty much stopped eating and lost over 30 pounds. The endo feels that her metabolism is just so out of whack that we need to get that under control first. She is not hungry at all. He arranged an emergency appointment with GI after the weekend and I feel better knowing she is being discussed by these two departments. Honestly I am almost hoping that they hospitalize her so that they can keep an eye on her and figure this out faster but I doubt it- she is functioning fine which is beyond my comprehension considering how little she eats. We do another set of blood in 2 days. I'll keep you posted. In the meantime please say a prayer that we get through this soon.
I know this is a long shot - I did read that 30% of people with lingual thyroids also had thyroids in normal positions. In other words, they actually have two. Most of the time, lingual thyroids are not discovered until the third decade of life when the thyroid malfunctions in some or they are discoved in an ER situation where the patient has trouble breathing or has a feeling that something is in the back of their throat (constant sore throat, etc.) The research says that there could actually be more people with the condition, but they don't know because there are no symptoms till later in life. Anyway, if the ectopic thyroid is clogging the passageway, they can surgically remove it. The articles stated they needed to go on thyroxin after surgery only if this was their only thyroid. In some patients, they also have a thyroid in the proper location so after removal of the ectopic one, there is no need for medicine. I also read where sometimes it is easier to treat people without a thyroid than those with one because sometime those with one has their thyroid operate normally off and on through their life. I know I am not a doctor but it is something to ask. Is it possible that the thyroid material your daughter has behind her tongue is now producing some thyroxin. Maybe the tissue is actually an ectopic thyroid. Maybe, she has a thyroid that has turned on in the proper location. Meaning, she was born with two but the one didn't function and the other was too small to function. A scan of the thyroid would show if there is thyroxin being produced in either area. Supposedly, the scans just show you how much thyroxin in the area - it could be tissue or it could actually be a gland. The iodine is absorbed by the thyroxin production. Like I said, I know you have to take it for what it is worth, but there is literature where the thyroid turns on/off during life. Another interesting discovery is that these people with ectopic thyroids are normal without the meds. Now, I would never take the chance. 90% of people with ectopic thyroids are fine without meds - but without meds, 10% are not. I wouldn't chance it. I know newborns should operate their T4 in the upper teens. An adult's T4 is 4.5 to something as normal. My daughter's level was 6.1 - but it does make you wonder. I guess though when she is taking the thyroxin it is actually suppressing her ectopic gland somewhat so that it doesn't enlarge and block her airways later in life. Again, I'm not a doctor, just a mom with a technical background trying to learn as much as I can so my daughter can lead a healthy normal life. I'm sure you will figure it out very soon. I will say a prayer for your daughter and family that it is resolved quickly. I do believe that God wouldn't have brought you this far and then have everything fall apart. Hang in there. Prayer is what gets you through and I do believe it works. You have a lot of people praying for you including all the people that read this site. Let us know.
You certainly gave me a lot to think about. I am going to look into it some more. Her endocrinologist did talk about doing another thyroid scan but has backed off of that. Her original scan showed only the lingual tissue- but you do make a valid point about it causing a sore throat and she has been complaining off and on about breathing issues (although she tends to have slight asthma). He did look in her mouth last week and all seemed fine. Her T4 blood levels after 18 days off meds. are a little lower and finally in range but still too high to start her back on meds. Her TSH is still very off but I am told that can take weeks to bounce back. GI didn't think there is anything major, maybe an infection or virus, but they do not want to run a GI series yet (I think her age played a big part in that decision- teenagers do not tend to develop many GI issues unless other indicators are present). She is on a high calorie liquid diet to start and we will see how that goes. I do feel better that her numbers are dropping, even if it is slow. It is almost as if her body went into hibernation- all her blood chemistries are normal- something I cannot comprehend with so little food. I am awaiting a call from her Endo. and I will concentrate on going back 16 years and relooking at the scans and run your thought process by him and see what he thinks.
I am a mom of a newborn she is 14 days old and was detected with a hi tsh at the new born screening and diagnosed with hypothyroidism. This is my first born . I have an appontment with an endo next week. Casn you please suggest what questions I should ask. I am at a loss and in shock and still asking why her, she is such a wee little thing. I cannot bear to watch her go thru all these blood tests. thank you for your help
Welcome, and congrats on you new little girl!! I can promise you things will get better, and the blood test will soon be less frequent. My daughter was diagnosed at 3 days old, and I went through the some shock you are going though. Other then one small pill every day, and a blood test twice a year, she is a perfectly normal 3 year old. And Very smart for her age. I can not think of any questions you may need to ask. But please remember that it will get easier!! Keep us updated on how she is doing.
It is true. Just hang in there. It gets easier. What matters is that your little girl is going to be healthy and perfectly normal. I know it is hard not to worry but seriously we are lucky that are kids have something that is able to be fully corrected through a small pill. By taking the thyroxin externally, they are giving their bodies exactly what the body would be manufacturing. The blood draws get spaced further and further apart as they get older. My little girl is 16 months now and we are going once every 3 months. She is very smart and picks up things quickly. She has quite a sense of humor and is very independent. She is so fun. Her hypothyroidism does not affect her every day life. She will have the same opportunities that her older siblings do. We are all blessed. When I think of the blood draws I always think it could be worse - say if they were diabetic and needed to handle a needle everyday. Thanks for writing. Keep in touch. If you have any questions, don't hesitate to ask. God Bless.
Congratulations on your baby daughter! My daughter is 17 now and I can still remember that day when the doctor called to tell us there was a problem with her thyroid- she was 7 days old. I think the hardest thing was trying to remain sane with all those pregnancy hormones bouncing off the planets. Please know that things will be okay and that this can be easily managed. Life that you pictured with your daughter will be just as you had dreamed - with a little extra thrown in but nothing that will be taken away. As for my suggestions on talking to doctors and managing as a mom I would encourage you to make sure that you get copies of all labs and tests that are run on your daughter. They will most likely do a thyroid scan to see if she has a thyroid, some thyroid tissue or no thyroid at all. Please make sure that you keep a copy of these results- I have needed my copy in the recent past and was glad I had it. I also started keeping a database from the beginning of her labs and her dosage adjustments. Most people probably do not need this but some kids can go through periods of needing more dosing tweaks and this information can come in handy - especially if you end up moving or changing doctors. It is not a lot of work and down the road you may be glad you have it. I would make sure the doctor talks to you about how to dose- with feedings or without, synthroid should not be taken with vitamins (and personally I feel you should avoid taking it at the same time as any medications- we have had some problems with too much or too little synthroid being absorbed when mixed with some other meds). Most people figure this out on their own but any information you can get now can only help. My biggest problem with our daughter as an infant was that she was a huge spitter upper- the medication was orange and spit up was streaked with it. I found that it was best to give her her medication between feedings and just before she napped to reduce the amount that came back up. If you have a similar issue discuss it with your doctor. She may need a little more monitoring. Do not stress over the blood tests- you will be surprised how easy you adapt to it and so will she. The first year is not that bad (if you use a lab that handles babies)- the babies are the hardest to handle from 1 to 2 years of age but then around 2 they adapt very well (that is what the lab techs told me and my daughter fit this pattern exactly). I know it all is a bit overwhelming right now but you will get into the swing of things. Once she is 3 life gets a little easier- less doctor visits and blood tests. It is always hard to adjust to the fact you have to deal with a medical issue but of all the medical issues that there are this is one of less complicated issues- no special diets, no physical restrictions- just make sure she gets her medication and is monitored for a correct dosage. There have been a few times in the last 17 years that my daughter has been hypo or hyperthryroid because her dosage needed tweaking so as you go along for the first few years try to learn as much as you can about the symptoms of being too high or too low on her medication. Once you get to every 6 month blood tests you may see symptoms before it is time to test and it helps to stay one step ahead. Congratuations again and enjoy your little girl- we are looking at colleges for our daughter- the time sure does fly!
Thank you so much for responding to my cries of help. It is so reassuring to hear that you have a teenage daughter who is doing great. We went by your suggestion and requested our specialist for copies of \labs and tests. Looks like the current dosage she is on is working. Her weight gain and height gain is appropriate. Thank you all for the support this is sucha great community
Hi, my baby girl was born on may 19 2010, and was told she has congenital hypothyroidism.. Im very scared and confused about the whole thing. she has her first appt with the endocron. this coming week but since out of the hospital has been started on her meds...can someone please give me some quick info on whats to come...Thank you
My second son born on 12 Jan 2009 with congenital hypotyroidism, which found on 5th day of birth. On 7th day of birth, draw the blood for re-test and started to take medication on 12.5mcg of levothyroxin. Till now, he is still with the same dosage of levothyroxin and will need to do regular check up every 4 months. Doctor has mentioned to X-ray or thyroid scan after his age of 3. I am worried if the government hospital is taking granted to make experiment on my little one. As I read on few articles, the dosage will be increased when the child grows up. But my son till now, almost 2.5 years old, still taking the same dosage of medication.
Well my first question to you would be...does your son not have a thyroid (Like my daughter) or is his thyroid just not functioning correctly. Because if his thyroid does not function properly, his thyroid may be working just enough to compensate for increasing his medication. If his medication is not at a high enough dosage you should be able to tell with his behavior. As long as your child is developing normally and hitting his milestone, I would not be to concerned. As for the thyroid scan, this is something that is very normal, my daughter had one when she was 1 month old. We were also told that if there is/was ever any sign of a function thyroid, another scan is normally done after the child turns 3. I hope this help.
Hi All- It's been a while since I have checked in on how everyone is doing. I hope all your babies are doing well and making you a bit crazy with being so active. Post some updates when you have a chance.
We are still dealing with health issues with our now 18 year old- newly graduated from HS (Yeah!!!). I will not go into details because honestly it would just add unecessary worry to your life and what she is going through is very, very rare. It would never be a part of your life. Most CH kids just sail through the teen years- albeit it a bit rebellious at times with their meds but they get through. Her medical issues are greatly complicated by the fact that she does not have a thyroid so I do want to share two things I have found out that I think would be good to keep in the back of your head as your children grow. First teens can have freaky illnesses - I have found that there is a reason that there is a medical specialty called Adolescent Medicine. Teen bodies (which actually change and grow until the mid 20s) are very different from young children and adults. Teens with chronic illness such as our CH kids may need extra care and attention if they go through some freaky teen malady. The best thing I did for my daughter was to change her primary care doctor to an adolescent med doctor that specializes in managing teenagers with chronic health conditions. She is the team leader who confers with all the specialists and monitors her routinely. Hopefully you will never need this specialist but just in case it is something I wanted to let you know is available.
Secondly- when my daughter was born we were told that it is rare for CH kids to have any other congenital issue- even after my daughter was diagnosed with a mild congenital cardiac condition at the age of 10 I was told it was very rare for CH kids to have another congenital issue. Well the thinking appears to be changing on this- a small, but real, per centage of CH kids are at higher risk for congenital heart, kidney, digestive and skeletal issues. Here are some websites to look at: http://www.gghjournal.com/volume25/1/ab21.cfm and http://www.hindawi.com/journals/ijpe/2010/940980/ - this all seems to be fairly new thinking but backed by some strong data done in NY state. Not all doctors are on board with this yet- our nephrologist readily acknowledges that CH kids can have congenital renal issues, the endocrninologists are not as willing to make that statement but are keeping an open mind. All I know is that for us my daughter does have a cardiac condition, renal symptoms, digestive issues and a twisted spine. The digestive and renal symptoms are not showing any of the "usual" diagnoses expected with CH kids but there is a thought process that there could be some very mild defect that, because of what she is dealing with has now become an issue. I am seeing some call for ALL CH kids to have cardiac and possibly renal ultrasounds at the time of CH diagnosis. I would be curious if you are hearing anything from your doctors on this. Is it becoming more commonplace to screen in your babies generations? Since this all seems so new I would appreciate any information you may have from your doctors on this. It is NOT my intention to scare anyone- the vast majority of CH kids are healthy with no other issues but if something comes up in these areas that your doctor says he wants to just keep an eye on it might be a good idea to have a specialist take a look and catch something early if it is there.
Our daughter is being very well managed and we do have a bit of a rocky road ahead but there is every expectation that as she grows out of adolescence her body will settle down and thing will be back to normal. Come September she is going to Drexel University majoring in Nursing- and she is one nursing student who knows what she is getting into! She will commute so that we can keep an eye on her (and considering the cost of Drexel commuting is a great decision all around!). For now we are just going to enjoy the summer.
Hi! So good to hear from you. My daughter is 2.5 years now and doing great. It is like you said in the past, it does not affect day to day life. In fact, if it weren't for the daily little pills, you'd forget she had CH. She is very smart, athletic, creative, etc - just so much fun. We thank God everyday. I wanted to wait to reply till after her Wednesday appt. to see if I could get some info for you regarding what the current thought is concerning abnormalities with the kidneys, heart, etc. Our Children's Endo Dept. is ranked third in the nation and her endo is head of the dept. He said that the viewpoint is still the same. For a CH kid to have other abnormalities is very rare. He said they have seen so many CH kids and it really is rare to have other issues. He believes that the problem would be something else, not CH. Just wanted to let you know what they are saying here. I will definitely keep your info in the back of my mind though if we end up facing some stuff. Also, I read those articles you cited. I saw how the article regarding India was with children that had not been treated with thyroxin at an early age so it made sense that since the heart and other organs are dependent on thyroid hormones that they would face some issues if not treated properly. Also, with the case in New York that data was comprised of kids 2 and under so hopefully if our kids have major issues they would catch it during the first years of life. I'm praying for your daughter. I hope it is not CH causing her problems but just something minor that will work itself out quickly and without any problems. Congrats on her going to Drexel. That is great! Hope to hear from you soon and that things are calm and having a great summer. Thank you for all your info. God Bless!
Hi- It is wonderful to hear about your daughter. What a great age she is at- old enough to be engaging and curious but still a bit young for the "no" phase. I am very glad to hear she is doing so well and life is so normal.
Thanks for checking with your endo - his response was verbatim what our endo said 6 months ago and we go to the #1 Children's Endo dept. However I just had a conversation with our doc this week and he is now acknowledging that although rare there have been studies done globally that do show that around 10% of CH kids do have other congenital malformations. If you are interested in looking at this further check out the references cited in the India article. With all the new information coming out it appears that my daughter does fall into this 10% subgroup of CH kids. Interestingly some european/asian studies still show cardiac as the largest secondary malformation but they have listed central nervous system and eyes as having congenital issues and for the last 10 or more years my daughter's ophthalmologist has been baffled by why her eyes get "funky" when she is sick. This new data might help understand some things with her. The thinking currently is that in this subset of CH kids there appears to be a gene or combination of genes that affect neural crest cells which play a role in the development of the thyroid, heart, eyes and other organs. Malformations can be major- (the NY study) or minor such as my daughter's pulmonic stenosis. So the CH did not cause her issues but when her thyroid didn't develop her heart and possibly other organs had similar, and thankfully minor, malformations. There is still a lot about my daughter that the docs are trying to figure out- not having a thyroid does complicate their testing/thought process since she does deal with other endocrine issues- which is not mentioned in the recent studies. I do feel better now that we are at least starting to hear that there are other CH kids out there that are having some similar health issues and studies are underway. For now we treat the symptoms.
I hesitate writing about this because I don't want you or others to worry about your children. Most of you have babies and are still struggling with so many emotions from the CH diagnosis. It is only a SMALL percentage of kids that seem to fall into this group. But I do feel that for the few that might have children with other malformations it is important to have this information out. I would recommend that any CH child with a heart murmur have an ECHO- the vast majority of murmurs are benign but if you do find another congenital malformation then you want to make sure your docs are aware of these studies being done and your child is watched a bit more carefully.
Since this is about small subset of CH children I don't want use this chat site to go into much more and worry parents unnecessarily so if you or anyone have questions and real concerns you can contact me directly at ***@**** and I will be happy to loop you in to what I am finding out.
Thank you for your prayers and support. Sometimes it does get a bit rough but we are very thankful that she has grown into a bright, loving and happy 18 year old and it might take a bit of time but she will be okay.
Thankfully, it is a small percentage. I do feel stressed with your info. Are we going to have to worry that our children end up in intensive care down the road? Do the studies make correlations between the different types of CH with respect to how major the maformations are (and how many)? At what age, are they seeing these problems in the CH kids? Was it before they figured out the correct treatment for the kids? How bad of a situration is your daughter in? Can it still be managed? Is your daughter requiring other medications/surgeries due to the malformations? With these studies do they feel that if they catch these issues early, they can fix the problems. What is the prognosis for your daughter currently? I know you said it was puberty causing a lot of problems. Thanks in advance. Any info is appreciated. Sorry I have so many questions.
Did read the Italian article. CMs did seem to be related to the initial T4 value at time of screening. The lower the value the more likely to have other problems - even though still a small percentage.
I wish I could get this information out with out stressing other parents. Please don't overly worry- it is a very small percentage of CH kids.
Let me tell you a little more about my daughter and what she is going through. I hate to be long winded but more information might help to settle concerns. First and foremost I did have an inkling from birth that she had a bit more than the CH. That heart murmur came and went for years before someone finally suggested that it be checked and they found a second congenital condition- the pulmonic stenosis. She requires no medicine and there has there been no restrictions on her activity- it just needed to be monitored as she grew to make sure it didn't get worse- and it didn't (the heart usually stops growing at 8years of age so after that they were more comfortable with her prognosis). She always had "funky" eyes- very healthy - optic nerve looks great but with illnesses they would get very irritated and red. Her eye doc has always been baffled as to why but he treated the irritation with low dose steroid drops and it went away. Her eyes over the last 2 years have been a bit worse at times- recently much more inflamed and she developed pstosis (droopy eyelids)- two different issues. Her eye doctor has been more concerned than in the past and still has no idea why they get inflamed but now with this new information things will make a little more sense to him. She was treated with high dose steroids and that totally took the inflammation down. The ptosis comes and goes frequently and her adolescent med doc feels it is just a reaction to her system being a bit overwhelmed- sort of like how an eye will twitch when you are overtired. She keeps an open mind to other possibilities though. It is somewhat rare that ptosis goes away but my daughter always recovers from it on it's own. My guess is we will have to keep a closer watch on her eyes with this new information and try to stay one step ahead of future issues but there does not appear to be any major malformation.
two years ago she developed GI issues (feeling very full after a little food)-still no major malformation noted but this is a complicated body system and minor malformations will not be picked up- she is on reglan for that and it helps a lot. Not the best drug to be on long term- makes me a bit nervous but it is needed and works. NOTE for CH kids on reglan: do NOT take with your synthroid- her TSH levels jumped to 70 when they were taken together- which makes sense since reglan moves the digestive process along faster- less synthroid is absorbed.
She also always had more thirst than the average kid- I would worry about diabetes but there wasn't increased peeing and just as I thought to mention it to the endo it would go away. This is our biggest issue right now. two years ago the thirst increased and she became more and more dehydrated no matter how much she drank- she was hospitalized or in the ER often over the last 2 years to try to get it under control. Her electrolytes would go out of whack and that is the scary- life threatening issue we deal with but as long as we keep a close eye on her and monitor her we can keep her "safe". It is easy to correct her- just give her fluids but a pain in the neck from a life style point of view. Constant visits to the doctor (which is not around the corner), blood tests, being told how much to drink, what to drink, etc. lots of not feeling great days ( they still feel that viral illnesses have complicated these issues- this year she had mono on top of everything else). She ALWAYS did not deal with viruses the way most kids did. She would seem more sick at a time when I would expect her to be getting better but she would always get back to normal so I never pursued it.
Here is the bottom line- I had a sense for years something else was wrong. If your gut tells you something isn't right with your child have it looked into- bring up these new studies and have your child screened- especially if your child has a heart murmur- that seems to be the overriding indicator that there COULD (but probably not- remember most murmurs are benign!) be a second malformation. Get the ECHO and know for sure. If there is a second malformation then pay close attention to these studies and make sure your child is watched a bit more carefully for anything else that might pop up. Better to stay one step ahead if possible. This information is all so new and doctors and researchers are trying to figure it out. All these studies are done on children that where diagnosed with CH and treated at birth- in countries that have the newborn screening so going untreated is not a cause for these problems now being seen. I do see that they are looking at T4 levels at birth and trying to relate some of these issues to that. I don't think there is anything definitive yet - I can tell you that my daughter's T4 at birth was great- 9.4 but her TSH was very high 448 -some are wondering if high TSH levels might be an indicator but there is not enough information yet to make that kind of conclusion. There are so many different types of malformations that are being noted that it is hard to come to any blanket prognosis for any of this small population of CH kids. I do know that my daughter does not have any MAJOR malformations other than the thyroid and that is a great thing for her future. She will always have health issues to deal with - we have to accept this but once we get some of this under control she can deal with it. If the worse thing is getting an IV and constant blood tests we really can't complain. I don't worry that something major will pop up- she has been looked at from head to toe. She can get dangerously sick but so can diabetics and other kids with other chronic health issues. We just have to learn how to manage her better and since this is all new and uncharted waters it will take time and she is being VERY carefully watched. Whatever management program they come up with for her will be very unique to her and maybe with these other CH kids with other malformations it is the same thing. She will have to learn how to "read" her body and be a little more on alert if something seems off. Teen and young adult years are rough-physically they have very different bodies than full adult and children so these malformations will present differently and psychologically they are a handful to manage- no teen wants to be managed! I saw one study done in France on 1200 young adult CH kids (just published this past March) - from the abstract conclusions seem to mirror what we have talked about- a small percentage having issues. I haven't gotten the full article yet- when I do I will pass it on- I just read the abstract- but again I know to take this with a grain of salt because things may settle down once these kids get older physically and more mature psychologically.
I'll continue to pass on any information I find. Please don't hesitate to ask me questions if it helps you worry less. By far most CH kids grow up normal and healthy and with nothing more than a needing some adjustments to their meds. The biggest things most parents should be fretting about is how to get through the rebellious teen years when their kids don't want to take their meds! A photo of hypothroid (balding and overweight) teenager that our endo showed my daughter when she was 13 took care of that issue for us- the few times she balked I reminded her of that photo and she popped that pill fast!
Thank you for all the information. It is VERY appreciated. It helps to know more info to eliminate some stress. It is the unknown that creates stress. I know we just have to approach things as, "We will handle issues as they come up, pray, address them, and move on." Your advice on paying attention to your "gut feel" will certainly be followed. Thanks for sharing. I will be sure to post if any additional questions come up. You are a wealth of information for the rest of us. Thanks.
I am glad that you all had good experiences with the newborn screening. We did not.
My daughter has a genetic problem that caused her pituitary gland to not signal the thyroid to release enough hormone. Because it is a very rare case of congenital hypothyroid it was not caught on the newborn screens. Luckily she only had a 25% deficiency.
It was caught at 22 months after she had problems with delays walking at 15 months, talking a little late, etc. I am really afraid of her prognosis for the future. I just pray that she has enough mental function to take care of herself.
I am sorry to hear about your daughter- it must be scary for you and your family. Now that she is on proper medication I am hoping that things are a bit better and she is starting to catch up to her peers. The fact that she is 25% deficient and not 100% should be a positive thing to hold onto. I find that with the uncertainty with my daughter I focus on the positive and the present (and with a 22 month old- the present is hard enough for any mom to deal with!) and let the future play out however it is going to. We can only give our children lots of love and the best medical care available and deal with each day as it comes. I know these are easy words to type but very hard to actually live. I can relate to that. Wish I could give you more support or say some magic words that make the worry go away. I find my support in good friends- God bless them!! and I try to find some time to take a break when I can and enjoy myself and laugh. I hope you can do the same every now and then.
I thought I was the only one who freaked out after receiving "the phone call" not sure about the rest of you but i wanted to die when the nurse at the pediatrician's office called and said : your daughter has been diagnosed with CH. my response was: what is that? the nurse repplied: mental retardation! ofcourse after I spoke with the endocrinologist I wanted to kill that nurse! Is it just me or does anyone agree that the person who informs the parents should be more educated in the subject and prepare prior to calling the parents?
It's amazing what some doctors and nurses will say. In our case the doctor was the alarmist and the nurse that called back with details actually calmed us down considerably. I would hope that medical professional students learn how to talk to patients and family as a part of their education although in life I have seen that the best professionals are those that have been through something similar themselves- experience is a great teacher!
Congratulations on your baby! I hope all is going well for you and your family.
I have a son who is turning 15 in a few days. It was nerve racking years ago, receiving the call that they needed to recheck his thyroid levels. He has no thyroid at all. It gets better once you get past the almost constant blood tests. We are down to twice a year now. The only difference between him and his older brother is the small pill he takes each day. It seemed so overwhelming when he was a baby, everything new, unsure but I am just so relieved that newborn screenings caught it. To me, that was the biggest part of it all. He is just your normal teenage boy. He is in 4 honors classes. I do recommend sticking with the same brand of medicine. There can be differences between brands and cause a fluctuation in levels.
My son too was born at 25 weeks and was diagnosed with hpt at 1 week old.He has been taking his meds daily(synthroid) and blood work everytime we go to see the endocronologist.Which is every 2 months or 3.He has been passing hard stool often mostly after feeds.He also has a receding hairline but I think he got that from me.He is now 7 months adjusted and 10 months corrected and can sit up on his own.He did that at 6 months.he cannot crawl just yet because he keeps his hands in a fist when we do tummy time.He was taken off breastmilk when they detected the hpt condition.Please let me know how your LOs are doing so I can atleast have a feel of what to expect.thanks
Does anyone still post here? My daughter was born Nov 8th and on Nov 16th we were told about her Congenital Hypothyroidism. We had her scan on Nov 17th and meds started on Nov 18th. My husband and I are reeling from it and would love words of encouragement, support, advice, etc.
I've just stumbled across this page today when having a look around .... I guess what I'd like to say is take a big breath, have a coffee and believe it'll all be okay. I can relate to the 'reeling' feeling as we certainly felt that way when our son was diagnosed but..... it was picked up early and with the effective treatment a 'normal life' is what your daughter will expect. Yes you'll have blood tests and have to give her daily medication but it's very doable... our boy is now a 6 foot 2 inches 16 year old who's done very well. The hardest time is the first few years when they scream through the bloodtests and you have to do them to keep adjusting their dose of medications as they grow quickly. After the first few years things settle and their dose stays the same for lengthy periods, it's a bit tricky during growth periods but as long as you follow the doctors advice on doses and test regularly it'll all be okay ....by about 2 our boy was able to take tablets (he chewed them up) and blood tests became much less of a drama as well. Happy to chat if you have questions at all. Remember it'll all be okay.
I'd agree with Libby1967. It's true. My daughter will be 4 years old next month and was diagnosed a week after birth with CH. Due to early treatment, she has developed normally and no different than her 4 older siblings. In fact, she has done things earlier - she walked very early and is already reading. She has quite the personality. You really can't appreciate it until you've lived it. It will be okay. If caught early and treated, your child will develop normally. It does not affect day to day life. She is no different than others of her age except for the twice a year blood draws. We are very blessed. I remember getting the news a week after she was born. Time seemed to stand still. The doctors said it would be fine. She would be fine and develop normally. Thank god for newborn testing. It really will be okay. None of us are perfect. We are lucky that they have a condition that is treatable and easily managed. Great to see posts from people with older children with CH. Thank you!
My son is eight months old and started taking Levoxyl when he was six days old. I used to use a syringe for daily medication. From two months ago, he didn't take the medication well and I just dissovle the pill with some water in a spoon and feed him the mixture. It has been working well. Since last week, the baby has refused to take the medication. He keeps his mouth closed and would cry if I force him to open his mouth. With him struggling, he doesn't get enough med. Any mom here have ever had this problem before?
My two week old son was diagnosed with hypothyroidism last week and also went to nuclear medicine for a scan. His thyroid was there however it does not produce the hormone vital for development . We have been given tablets and I crush one with breast milk everyday . I'm so saddened and in shock still. I love my gorgeous boy and I'm hoping the tablets help. I just feel so lost.
My two week old son was diagnosed with hypothyroidism last week and also went to nuclear medicine for a scan. His thyroid was there however it does not produce the hormone vital for development . We have been given tablets and I crush one with breast milk everyday . I'm so saddened and in shock still. I love my gorgeous boy and I'm hoping the tablets help. I just feel so lost.
Hi my daughter was doagnosed woth ch and we started her on eltroxin since she was 13 days old now she is 6 months old and thank God she is doing great and meeting her milestones. She doesnt like to eat though.. She is wonderful and likes to play a lot.. I thank God i have