Congenital Hypothyroidism
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Congenital Hypothyroidism
| Wed, 04-19-2006 - 5:17pm |
Just found this board and wondered if there are any other moms out there with kids that have congenital hypotyroidism (CH)? DD was diagnosed and started Synthroid at 6 days old. She is now 8 mos and doing very well, however I still stress when she sleeps more than normal, eats less than normal, poops less than normal, etc. We've also found out we're expecting #3, we've been told that it's not hereditary and the chances of this baby having CH are very slim, but I still worry. KWIM?


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Hi Tnmommy2006,
Welcome!
I can't relate to your question or situation with your daughter but just wanted to welcome you to our board.
Hi, I can totally relate!
Thanks for the response. Thank goodness for those newborn screening tests! It was really scary for me to know what Becca's future could have been and it is so treatable! We are still seeing the Endo. every other month and doing bloodwork every month. She's still growing quite fast but we keep expecting her to slow down. For a while I worried that she was too heavy (23 lbs at 8 mos.) but both the Endo and her pediatrician said not to worry, her length (19") is off the charts also. She's my little Amazon :-)
I am glad to hear that Katie doesn't have any symptoms and is developing normally, or even a little ahead of her age group. That was something else I had read - that kids with CH could be a little delayed. Alex, our son, is almost 3 1/2 and I think he was a little ahead of where Becca is now, but I know we read to him alot more than we read to her, and I also just flat out can't remember that far back. KWIM? Our Endo also told us that he has a CH patient that is now attending Princeton/Yale/MIT (one of those schools), so we aren't going to let that be an excuse when she gets older and is trying to get out of studying.
As far as genetics, I tend to agree with you. I'm glad you are able to put together some information for your doctor to look at. If you don't mind, I'd like to know what the dr says, and also if any of your drs do or recommend anything for your new little one. I can't remember if I mentioned that we just found out we're expecting #3 also. This one kind of caught us off guard. Between BFing Becca and the stress of everyday life, I have NO IDEA when this one is due. I guess I'll know more after my appt Tuesday.
Again, thanks for the response and reassurance. Good luck with the new one!
Hello Everyone,
My son is 5 1/2 years old and born with CH. He was 9 days when we began eltroxin. We went for blood work a lot in the beginning, but now it is only every 6 mos. His growth and development is fine. He actually speaks English, Italian and French... so there are no worries on the cognitive ability! There used to be a specific board on this site dedicated to children with thyroid conditions, but it closed. I am so happy to have found this one.
Now, you may wonder why after 1 1/2 yrs I am back on the site.... well, the genetics is currently being researched in this area. My daughter is 2 yrs and we have a strong confirmation that she may have Pendred's disease. It is a thyroid based hearing loss. I had been informed 5 1/2 yrs ago that my son's condition was not genetic, well that may not be true. I am currently in the process of trying to have our DNA analyzed in Europe. I meet with my GP tomorrow to get the specifics for this. I have been in contact with a geneticist who has funding for research.
Yes, we have to follow the protocol in Canada here too for the genetics work, but it is very slow and we have been unhappy with the care we have had for our daughter. I won't go into that on this thread though.
Sorry for writing such a choppy e-mail, I am rushed here and must get the kids to bed. I hope we can keep this thread going and I can assure you that having CH is okay. We all want our babies to be perfect and I know how upset it was for me to find out he had a disease. I'm still a bit protective!!!
Regards,
Danielle
Hi Danielle,
I'm glad you found us over here.
Hi Calley,
Thank you for the kind welcome and please accept some of my spelling errors this evening!
My daughter's hearing loss is severe in both ears. It varies though depending on the frequency (500mhz, 2000 mhz etc.) She is now hearing around the 40dB range with her hearing aids. Most conversation is 20-40 dB. She was varying from 60dB to 90dB, so getting to 40dB is great. We of course also do sign language as well as other languages in our house now, so we are getting quite multilingual!
My focus now is audiometry (getting her to pause to listen), pointing and identifying everything and very slow, short words. It is like having a baby and exposing them to language... although she is 2. Our focus is english for her, but to aleviate frustration and continue the communication, I also sign the words to her.
We just got her hearing aids 1 month ago. It took 4 months to get to that stage. I had a pediatrician not listening to me (no pun intended there!!!), so I had to initiate tests through our local health authority. The speech language route is examined first, so hearing tests were then recommended and many other tests since!
On the genetics front, my GP is on board and is trying to help me out with the DNA being sent to Germany.
How long has this file been on it's own board? I know there were a number of regular people on the old board who may not know about this....
This is the old board...
http://messageboards.ivillage.com/iv-ppchthyroid
Danielle
Danielle,
I just happened to pop back over here and saw your post.
I have Hashimotos disease and Im eight months pregnant. Wondering what the chances of my child having congenital Hypothyroidism is? My doctors dont seem to concerened with it being an issue. Those of you who have children with this disorder, do you have a thyroid disease? Thanks for the info.
Danielle
Thanks for the info. Hashimotos disease is an autoimmune disorder where your body produces antibodies that attack your thyroid gland usually making it unable to produce the hormones your body needs. In other words Im Hypothyroid, most people that are hypothyroid have this disease. Its like someone with diabetes where the body attacks the pancreas and thus making them unable to produce insulin. What was the reason the doctors said your child has hypothyroidism? Does he have these antibodies? From what Ive read and what the doctors tell me pretty much anyone with hypothyroidism has it because of Hashimotos disease.
Danielle
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