Do you have a baby with congenital hypothyroidism?

[colemomma]

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.

[Libby1967]

Hi,
I've just stumbled across this page today when having a look around .... I guess what I'd like to say is take a big breath, have a coffee and believe it'll all be okay.  I can relate to the 'reeling' feeling as we certainly felt that way when our son was diagnosed but..... it was picked up early and with the effective treatment a 'normal life' is what your daughter will expect.  Yes you'll have blood tests and have to give her daily medication but it's very doable... our boy is now a 6 foot 2 inches 16 year old who's done very well.  The hardest time is the first few years when they scream through the bloodtests and you have to do them to keep adjusting their dose  of medications as they grow quickly.  After the first few years things settle and their dose stays the same for lengthy periods, it's a bit tricky during growth periods but as long as you follow the doctors advice on doses and test regularly it'll all be okay ....by about 2 our boy was able to take tablets (he chewed them up) and blood tests became much less of a drama as well.  Happy to chat if you have questions at all.  Remember it'll all be okay.

[11d]

Does anyone still post here? My daughter was born Nov 8th and on Nov 16th we were told about her Congenital Hypothyroidism. We had her scan on Nov 17th and meds started on Nov 18th. My husband and I are reeling from it and would love words of encouragement, support, advice, etc.

[margypops]

there is also an expert thyroid disorders forum on the right hand side

[margypops]

You may find more information on the thyroid disorders forum   good luck

[carolkawira25]

My son too was born at 25 weeks and was diagnosed with hpt at 1 week old.He has been taking his meds daily(synthroid) and blood work everytime we go to see the endocronologist.Which is every 2 months or 3.He has been passing hard stool often mostly after feeds.He also has a receding hairline but I think he got that from me.He is now 7 months adjusted and 10 months corrected and can sit up on his own.He did that at 6 months.he cannot crawl just yet because he keeps his hands in a fist when we do tummy time.He was taken off breastmilk when they detected the hpt condition.Please let me know how your LOs are doing so I can atleast have a feel of what to expect.thanks

[tennmom1516477]

I have a son who is turning 15 in a few days.  It was nerve racking years ago, receiving the call that they needed to recheck his thyroid levels.  He has no thyroid at all.  It gets better once you get past the almost constant blood tests. We are down to twice a year now.  The only difference between him and his older brother is the small pill he takes each day.  It seemed so overwhelming when he was a baby, everything new, unsure but I am just so relieved that newborn screenings caught it.  To me, that was the biggest part of it all.  He is just your normal teenage boy.  He is in 4 honors classes.  I do recommend sticking with the same brand of medicine.  There can be differences between brands and cause a fluctuation in levels.