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Do you have a child with congenital hypothyroidism?

Sending this out to any parents out there who may have a baby with congenital hypothryoidism.  I would love to be able to talk to someone who is dealing with this same thing.  My fourth baby was born with this and it was all new to me.  I don't really have anyone I can talk with who can relate because honestly no one understands.  Thanks!
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Avatar universal
Hello ladies, my little guy turned 1 on April 23rd and I am happy to report that he is doing wonderfully!  He is so smart and active and his endo says he is doing great.  I don't think he is going to be very big, but I'm sure he will make up for it in other ways.  He started standing/walking at 10 months which is much earlier than my older 3 boys.  I still worry constantly about everything with him.  He is having some problems with his feet, but my endo isn't overly concerned with that.  Since birth his little feet have been extremely dry and now they stayed cracked open between and behind his toes to the point that they "run" constantly.  His endo told me to let him go barefoot as much as possible.
The Lord has truly blessed our family with this little boy and we are so thankful.  He is developing normally and he is even taking his synthroid whole now.  He just chews it up like it's nothing!  Though at times it still bothers me that he will have to take medication for the rest of his life, I know that things could have been much worse.  I spoke to one lady whose daughter wasn't diagnosed until 6 weeks of age and she was having significant developmental problems.
I look forward to talking with you all soon!!  God bless and have a great day!
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506856 tn?1215001206
My daughter, who is 7 weeks old was diagnosed with CPH, also.  She was 8 days old.  It is very scary, especially when they tell you that without meds she could have mental retardation.  We've been having trouble with our daughter showing hyper symptoms while taking her meds, although her test results show she is in the normal range.  Now she is on a lower dose and doing much better.  However, now it is hard to tell what is so called "normal" behavior and I worry constantly about every little thing.  Everyone tells you not to worry, but it's impossible not to! I hope all your little ones are doing well. Let me know if you want to talk, because I could use some support, too!  
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Avatar universal
My son was born with congenital hypothyroidism as well.  He is my 2nd child and I am very worried about him.  He started treatment at 11 days old and his endo says he will development normally as long as he is on the meds.  I myself find it hard not to worry.  How is your baby doing now?
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Avatar universal
Thanks for getting back with me.  You're the only person who has given me any insight.  My baby's endocrinologist told me that his thyroid was way up under his chin and that they couldn't even find it with surgery.  It failed to move down his neck.  I was totally unaware that the thyroid was so crucial to the development of a baby's brain.  I was told that if he did not receive his meds he would be severly retarded and deformed.  Needless to say his first week of life was a whirlwind for my husband and I.  We had never even heard of congenital hypothyroidism.  It showed up in his PKU.  He was born on a Monday, had his PKU on a Tuesday and on Thursday the hospital called and said we had to have him to an endo. ASAP.  They did that dye test on him.  Anyone I've talked to just says "don't worry about it, as long as he is on his meds he'll be okay", well that's fine and dandy unless you're his mother who is looking at the future of her son.  It is something I was unprepared for.  I'm very thankful for his progress so far.  He just went for his 9 month check and though he hadn't grown very much they were happy with his progress.  I have a good friend who had her thyroid removed because of persistant problems.  I'm not familiar with the radioblasting, but I completely understand your distress.  Thanks for letting me vent and you are more than welcome to vent to me anytime!  I may not have a lot of answers but I'm a pretty good listener!  Best wishes for your sweet girl.
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Avatar universal
I don't have a baby with hypothyroid i have a 14yr with hyperthyroid diagnosed at the age of 9yrs. I feel the same I don,t have anyone to talk to and no1 seems to want to on this I seem to have drawn a blank. I want to talk to someone that has had the radioblasting as they call it thats what they want to do next but my gut feeling says leave it she has to finish growing yet wait until she is an adult as i can't get any answers. Maybe we can talk soon i am anovice on the computer and i don't have enough time to be on it for long all the best good luck and txt soon ha ha! TEXT!
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