Congenital Hypothyroidism

[MrsCow]

Congenital hypothyroidism


Today, 13:12 PM #1

Hi ladies,
my son was diagnosed with congenital hypothyroidism when he had the guthrie test at 5 days old. Off we went to Great Ormond Street at 10days old and to cut long story short, wew go every 6myhs, ( he is now nearly 5 years old and perfectly fine), he is on 62.5 and 75 mg of thyroxine daily. I dont know any one else with child with this. Just wondered if anyone else has experience of this xxx


Many thanks

 

[FebMum2Be]

Hiya Hun I have no experience at all and no advice I've never heard of a child so young having thyroid trouble. Have they spoke of removing it in the future? X

 

[MrsCow]

Oh thanku for replying xx We under Great ormond Street, they dont think he has a throid gland! One in 4,000 babies born with this condition, but if picked up early enough, ( thankfully it was for us ) they develop normally. He on thyroxine and they keep him on the higher end of spectrum so he can be quite hyper!! Or is he hyper just cos he is 5 year old boy lol ! Will never know xx
Thanx xx

 

[Lulu_Laroo]

I don't have experience of this, although I'm hypothyroid myself, so Poppy had to be tested when she was a week old. Luckily she was clear of it. xx

 

[Hayley1608]

Savannah has this. She has 25mcg of levothyroxine a day and 50mcg every other day. They said it may effect her development etc however she started crawling at 6 mo!

She had a scan of her thyroid and all appeared fine. It came to light that I should be tested to see if she picked it up from me. I was tested and I have a lack of the thyroid hormone but my thyroid functions are fine.

Really its had no effect on her

It's good to hear a positive story about it and I'm glad your son is doing well
X

 

[MrsCow]

aaahhh, thanx ladies, Hayley good to hear from another mum with experience of this!! Does she have tablets and then u crush? Alex is on 75mg one day and 62.5mg the next, he is 5 on sunday and really well, just a bit lively lol !!
Thanku for ur reply, glad Savanna doing so well xx

 

[Hayley1608]

That's ok I have never heard of any children with it either and should have started a thread myself actually!

Yes the tablet is crushed and given to her in a medicine syringe mixed with a bit of milk!

Is hyperactivity one of the side effects of the tablets? Savannah is so energetic its unbelievable! Maybe we just both have very lovely children!

I remember finding out and crying my eyes out, I was so scared of the unknown. Looking back I had nothing to worry about but of course at the time you don't know that do you.