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Avatar universal

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.
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442073 tn?1231877632
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.

Avatar universal
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.
442073 tn?1231877632
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.
Avatar universal
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!!
442073 tn?1231877632
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!
Avatar universal
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!!
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