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EndocrineWeb Community Advice

Congenital Hypothyroid

From: Anonymous - 9 years 40 weeks ago

Hello everyone, my son had difficulty keeping his head upright and he had a big fontanel. The local doctor suggested a T4 test and she advised us to see a endocrinologist. We did. We have given him 37,5 mg Tiroksin(T4) everyday then reduced to 25 mg per day. We started when he was 2 and 1/2 months and now he is 11 months old. he looks ok , and can say the words like mammy,daddy etc... (five words probably) he can keep himself sit for long time. But he doesn't crawl. I am concerned that he will be in delay in walking. Is there anyone who experienced or experiencing a similar or the same story ?
Best regards

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Dear Akin,

My son was born almost 4 years ago with congential thyroid disorder. They caught it pretty quickly at the hospital. However, he has some developmental delays, which I hear are very normal for children born without thyroids.

I hope I have a couple helpful suggestions for you and some reassurance. My son has speech delays, he didn't crawl but rolled around for the longest time and he didn't walk until he was almost 20 months old. This is due to the fact that children born without their thyroids tend to have lower muscle tones.

One thing that was very help to us. We contacted our states local heath and welfare department. They have this great program through the infant toddler program. My son had speech therapy, physical therapy and sensory therapy. This was all free of charge and done in my home. We had spent a lot of money on other physical therapists and also on getting his feet looked at due to prolapsed ankles. The state was a huge blessing and he has made such leaps and bounds it is amazing!

We still have some battles we fight. He is very independent and strong willed. He still has speech delays and he has low muscle tone. I had him evaluated just today to see if he had anything on the autism spectrum. The doctor felt he did not but he did tell me that my son will probably have learning difficulties especially with languages, reading and writing. He also said he will most likely have low muscle tone his whole life. So not the first kid picked for team sports. However I am looking into some more therapy for him outside of the speech therapy and thinking of enrolling him in karate or something to help with his coordination.

As a parent who has been there I know how worrisome it can be when it seems like they are falling behind on some of those mile markers. Be concerned and seek help. I strongly believe the more we do for them when they are younger the better chance they have when they are older to be fully developed even with the disorder.

Good luck
my thoughts and prayers to you.

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Dear Hmpetey,

Thank you very much for your response. It's been really helpful.

From your e-mail I understand that I am right to be concerned and should expect delays in my child's development although his problem could be moderate.

He was born with thyroid gland with T4 level slightly lower than minimum values . We've been giving him 1 tablet Euthyrox per day which is 25 mg. Please let me know if you've been giving the same dose.

Secondly, my wife used to be chronically stressful due to several reasons during her pregnancy. Was it similar in your case? I am just trying to understand if it could be the result of her stressful pregnancy ?

Finally should I take my child to a child- neurologist?

Look forward to hearing from you.

Best regards

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My daughter is now 23 and was born without a thyroid. She began treatment at 12 days old and is about to qualify as a vet. She has been a straight A student throughout her education so please do not think that not having a thyroid is any more than an inconvenience.
I remember my GP telling me when she was diagnosed and I was terrified, if you don't feed your baby she will starve, if we don't treat her she will have problems.
Good luck