Mary,

 

First of all a brief introduction.  My son has swcah and he is 10 yo.  He was diagnosed at 2 weeks old also.  Since two he has been grossly over suppressed and then more recently he became very under suppressed.  In both directions this affects his emotional behavior.  He has in fact always been emotional since he was two years of age, though basically good health wise, and not too many trips or stays in the hospital.  So we cannot exactly put his emotions down to being sick with cah.  I can however look back at records now and see a pattern in his behavior, which matches pretty much with his growth spurts.  These I remember much the same as you would remember perhaps your child’s ability to deal with school.  Most recently, when he was very under suppressed he was bordering on having adhd symptoms.  I looked into this, as like many doctors, this had not been tied in with behaviors or emotions until recently.  At the beginning of one particular year, my son received a report with a’s and b’s and he was a delight to teach.  By the middle of the same year he had become so under suppressed, his hormones where greatly affected and his behaviour.  He did not want to go to school and was not coping too well with stress or handling himself well at school.  His class work deteriorated a great deal.  He could not do homework as he fell so far behind with his study.  Was not so much hyperactive but very fidgety, playing with small objects in his hands all the time and distracted other students.  Copied other's work instead of using his initiative and became very frustrated easily if he could not complete a task set by either teacher or us at home.  It did not matter what we did or said, we tried it all, nothing seem to work.  Teachers refused to beleive me when I said that he was usually a good boy ( he had a new one from a new school and she just didn't know him very well so thought that it was just his normal behaviour!)   We tried incentives for good behaviour or time out.  Each week something dismal would crop up that he had either done at school or to one of his siblings.     The teachers felt he should be on Ritalin (a few kids in his class are and they observed the behavior as similar to these children) and my child’s doctors where not exactly forthcoming with information about how such levels could affect him.  Finally we got a blood tests and our childs doctor rang us urgently and said to up his hct and that his levels where way otu of whack.  This did not work and he then ended up on dex suspension for a month or two until his adrenals regressed.    Basically a lesson learned that I would not wish on other parents.   I felt that he was very ill, but other's were treating him like a naughty little boy and thus I felt he span further out of control, as he felt more stressed.  As we know this puts a big demand for cortisol out by the pituitary and of course he was not able to meet that demand.   What a difference we saw in him, but sadly now he has been switched back to hct, and has started with BO again, I see him heading that way again.   I feel he has reached a stage or place that just the hct alone is not controlling things.  We see a Paed Endo inNovember to assess his needs and take a closer look. 

 

However,  I really feel that your child should not be on any type of medication for adhd or behaviors if his hormones are imbalanced.  They have been known to cause much greater problems such as drug induced schizophrenic disorders or bi polar disorder.  I read this information from several sources and I would be happy to pass that on if you would like.   Recently, since getting his hormones back in to kilter, he is excellent at school and back to his same old self.  Turning out good work and behaving like any normal kid.  There have been many studies into the hormone imbalances either way and the information is out there, but only if you look for it.  It still needs to be recognized by doctors for the best part, as many children are being scripted drugs to treat these behaviors when it is simply a case of getting the child’s hormone levels where they should be.  A sound like Doctor Rivkees is doing a great job and I don’t doubt that he will help you to get Andrew back on track. Please feel free to e mail me anytime.

JH