Congenital Hypothyroidism + Behaviour

[maighdlin]

Not sure if this would come under "special needs" but it seems to be rare.

My DD is nearly 10 months and has CH (congenital hypothyroidism) For some reason we haven't been able to get her up to normal levels for a few months and they keep increasing and increasing her dose. The thing is when her dose increases she goes mental. She will scream and scream for at least an hour and a half before bed time. Eats like a horse for a day then barely takes her milk the next day. This happens for about a week and a half when her dose is increased. The only way i can describe it is she sits looking pissed off and screams at the slightest thing. Has anyone else had this problem? Is it something i should bring up with the endocrine people? She just had another increase this week and im going through hell a new born is a lot easier!

Hi maighdlin, my DD doesn't have hyperthyroidism but does have a different condition which means she is dependant on steroids (is that what your DD is on that they keep increasing the dose of)

My DD used to and still does get hyperactive and sometmes a bit aggressive when she has increased steroid dose ad it can takea while for her to adjust to a new dose whether it is higher or lower, I have often noticed differences in her sleep patterns after a change, and in her behaviour.

DD also eats like a horse when she is on an increased dose and once she became very very upset to the extent that I rang our support group leader, that time it was because DD had been on double steroids due to being ill and Ihad decreased it to normal levels and she had been missing the increased dose if that makes sense.

Is there a support group for hyperthyroidism in children? We have got an excellant support group and the knowledge I have gained from them has been invaluable as it is quite a rare condition so soemtimes itis hard to get information.

Hi Maighdlin. My little one has also been diagnosed with hypothyroidism. Although she didn't have problems settling when her dose was increased (we've only had that once as she's only three months old, so perhaps that joy is still to come!), getting the medicine down her is always a challenge! The doc told us that it'd be likely her dose would increase as she gets older - I guess that makes sense as her body's getting bigger so needs more of the hormone to go around.

Anything unusual is probably worth mentioning to your doc, I think.

Our doc has been very reassuring, though - apparently it's the easiest of the heel prick test diagnoses to treat.

I have only just seen this thread. Ds2 has Hypothyroidism and was diagnosed at the age of 2. Luckily for us & him, his thyroid levels have stayed pretty much normal on a low dose of thyroxine (25mcg daily) so we have not had to deal with the effects of increasing doseage.

I do know from other family members (taking thyroxine) that the increase in medication does have an effect on boosting energy levels rapidly & also has an effect on appetite for a short time.

Hi Everyone,
My grand daughter was diagnosed at birth without a thyroid and has been on medication ever since. She is 3 now and doing very well. We did have problems when she was on the generic tablet's, she was not well at all and now after fighting hard she is on the goldshield make and is a different child. we were so convinced that the gineric one was bad for her we offerd to pay the difference in cost. The gineric one was 50p and goldshield £2.50 per month. She is having difficulty with her TRS levels and we have reverted back to crushing the tablet although she took it whole ok. But we were virtually accused of not giving her her medication. From what you have said I would say she is on too high a level, but talk to your consultant.
There is not a lot of information on this condition and it is a case of learning along the way.
Hope this help's