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Do you have a baby with congenital hypothyroidism?
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.
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.
Congratulations on your baby! I hope all is going well for you and your family.
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?
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 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.
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.
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 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!
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!
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