congenital hypothyroidism

[nessyd]

Hi I'm new to this site and found it looking for information about congenital hypothyroidism. My daughter is nearly two and I thought the worst of it was over. The blood tests were less painful for my daughter (and myself) and the tests were becoming fewer. She is developing well and makes all the right noises her speech is unbelieveable. But Saturday week ago we ended up in hospital all because of gastro, a simple bug that most kids suffer through and come out the other side skinnier and well. My little princess got gastro from her older brother, she has two, and from there thats all thats the same as normal. It got to the point where she was vomiting and had the runs at the same time. Because she couldnt keep her thyroxine down her metabolism slowed enough to stop the bug from going its natural course and out. You think you have it mastered and all under control the medication and the medical procedures and then something simple and normal turns into a major drama. I was feeling a little isolated and rather unnormal when I found this site and hoped that there were more mums out there who may be able to give a heads up on some of the normal things that may go haywire. MLP is now fine, they put her on a drip to rehydrate her and eventually got things back to "normal" She even learnt a few more words.

[kiwibird27]

Big hugs, I don't know much about your daughters issues but my daughter has a genetic disorder (check out my diagnosis thread) and I know what u mean!! Don't feel alone, it seems to be like a giant roller coaster ride each day that u just can't get off. We too end up in hospital with the simpliest things that could mean serious issues for my daughter but I've just come to accept it and roll with the punches!!!

Keep smiling

[Rhys'Mum]

Wow, I never thought about the impact of the slowed metabolism that way. I have hypothyroidism and although its not severe it has had an impact on me. I really need to focus on eating regularly and I get incredibly tired and grumpy if I don't. I do seem to take much longer to get over things than others and illness really knocks me flat, perhaps it is because of the impact on metabolism, thanks will watch that.

I have a few friends who have quite severe hypothyroidism as well and we have all found that if medication levels are monitored and kept at a good level we are pretty much fine. We all have a tendency to be a bit naughty sometimes and 'forget' and then go off our medication - don't ask me why and while the effects may be noticable fairly soon it can take a long time to get it back under control properly. (perhaps the depression element is why when you forget you seem to keep missing it).

I've always struggled with my weight and this has caused me a lot of emotional challenge so if you can get your daughter to enjoy healthy eating early you will be setting her up well. I could probably have been encouraged to be more active as well, because I was physically tired it was hard but its a self perpetuating cycle.

Afraid I really only have limited experience and was diagnosed as an adult. Hope you can find support from others going through it with young children. Oh and welcome to Bubhub, its a great place to visit.

[nessyd]

Thanks I will try to keep her on a healthy eating plan although she has just discovered "treats" thanks to her two older brothers (4&6) who think they are doing the right thing by sharing. I tried giving her medication to her in the morning rather than at night and it seems to have made a positive impact especially on her digestive system. She doesnt seem to get constipated and is happier and more active. I talked to the doctor about this and he seems to think that it shouldnt have made a difference but im sure it has. Does the time of the day you take your medication make a difference? Thanks for the reply.

[mum720]

Hi, there is a great yahoo group/forum for congenital hypothyroidism, that provides a lot of advice, information and support - http://health.groups.yahoo.com/group...ypothyroidism/ (http://health.groups.yahoo.com/group/Congenital-Hypothyroidism/)

We have found a lot of info about treatment, iron and absorption, ways to make blood tests less of an ordeal etc, at this site.