Congenital hypothyroidism and delayed speech

My daughter is 20 months old and was diagnosed with CDT on day 5 as part of the heel prickly test. A nuclear medicine scan confirmed total absence of any thyroid tissue. She had other cardiac and craniofacial issues so far her medical team is prioritising those. She is on 50 micrograms of Levothyroxine a day and has paediatric endocrinologist appointments and blood tests every 2-3 months.

However I am worried sick as she has delayed speech and global development delay. Her medical team want to check for autistic spectrum ASD when she is 3 years old.

Anyone with kids with CHT or adults here who can share their experiences...please let me know.

Thanks!

M

4 Replies
oldestnewest

Sorry typo *CHT not CDT and heel *prick test for newborn

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I'm so sorry to hear about your little one, it must be very concerning. It's hard for me to advise as I know literally nothing about children's ranges and what they should be and the complications or intricacies of such young children with no thyroids?

Do you have print outs of her thyroid results and do they show children's ranges. Are you sure she's optimally medicated?

As with adults, the best I can suggest is to read as much as you can about this and specifically related to children so you are in a better position when discussing with doctors and making decisions. I'm sure there'd be a better forum for kids maybe on facebook or elsewhere that the members would have more direct experience of this with babies. You might be able to read more on either thyroiduk website or british thyroid foundation and find more specifics on children and just google what you can. It's obviously very difficult to apply what we normally say about adults as children are still developing and many of us have no experience in this ourselves.

I'm really sorry I can't help any further but I wish you all my best :-)

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I would add that I would make sure they are testing her T3 levels. They often don't in adults and for me this was a problem as I don't convert T4 and wasn't picked up until a T3 test was done much later.

Also for what ever reason, many of us tend to be deficient in Folate, B12, Iron and Vit D so well worth making sure these levels are tested also to make sure all okay :-)

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Have a look at the BTF site as they have some information on children's thyroid issues. I sympathise with you, as when I was born over 60 odd years ago no heel prick test my parents had to fight to get me confirmed with a underactive thyroid, my Mum was just told she was a fussing mother. I wish you all the best in getting this sorted.

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