my son has hypothyroidism

[jollyjollymom]

I was devastated to know that my son has hypothyroidism few days after he was born, he is 3 months old now and on thyroxine ( for lifelong) I would love to hear from other parents of kids with hypothyroidism, please help me to cope with it...

I don't have a kid with this - I am the kid and obviously now adult with this. I know it isn't the same with everyone, but thyroxine has meant that my condition has been very stable. I take a tablet every morning and thats all. I mean I never get symptoms, except as a teenager when i "forgot" to take it sometimes. But for me it is really not a problem. Remember too that the thyroxine is only replacing what is missing in the body and in that sense it is a natural substance.

Ditto Lesley - I don't have a child with it. But I am an adult with it and was a child on lifelong medication for something else entirely (epilepsy).
The medication will keep his growth and development under control so is a good thing. While he's little you need to make sure he takes it, and when he's older that he understands that he needs to continue to do so. He will never have known anything different so will not perceive it as odd.
It is a shocker when your baby is so tiny and there is something the matter - is that what you are finding difficult?

thanks for your reply lesley33. my son is without a thyroid gland, he started to deteriorate from 5th day of life, thyroxine was started on the 7th day. He is like any other 3 month old baby now, all I am worried about is his intellectual development as he had no thyroxine hormon at all at birth.

Sorry I don't know if this will have had any effect on him. Would your Dr's not know?

Jollyjollymum, my dc was diagnosed with this condition at 9 months, as it was not picked up with the heel prick test. She was sleeping all the time, putting on weight, not reaching her milestones, but when my dc was put on thyroxine she started progressing, although behind all other children, but then she had 9 months of catching up! She is at mainstream school and the doctors are pleased with her.

Please contact me if you want to ask anything.

Hello. No personal experience but best friends DD has it,diagnosed with the heel prick test. She is 3 now and very healthy and completely normal if not advanced with all milestones.
She also has no gland and has blood tests every 3 months to monitor her levels.
I know it was a big shock for my friend but she doesn't even think about it anymore.,apart from giving her her medicine every day.

Thanks BABYBREATH and MRSHOOLIE. my son is 4 months now, he is a happy smiley baby appears to be completely normal for his age, he had his hearing test last month, it is normal too. thanks again for your replies....

Sorry to dig up such an old thread ... Wonder if any of you posters are still around? Or anyone else with experience of congenital hypothyroidism?

DD has hypothyroidism, diagnosed at 7 days and now 10 weeks.

Is anyone around with any experiences to share? We away from being quite blasé about the condition to fretting about every nap being too long! There's so little info on the internet and some of it is terrifying.