Talk

Advanced search

Here are some suggested organisations that offer expert advice on SN.

Birth trauma and subsequent developmental problems/addisons disease

(1 Post)
carozam Sat 02-May-15 10:16:16

My son is now 16 and was only diagnosed with Addisons disease at the age of 14 after 14 years of seeing medical specialists. Those 14 years were filled with worry as we continued to notice how different he was to the other kids
.I had a 3 day labour and when he was born he had the cord around his neck. His APGAR score was apparently fine. A few hours later havng been unable to feed from me he was hyperventilating and taken into special care where he was diagnosed with hypoglycaemia, polycaetheamia, and was jaundiced. He stayed there for a few days , eventually started feeding and was discharged with no further tests and apparently he was fine. His issues from then on included: poor sleep, speech difficulties, could walk but wanted to be carried everywhere, constipation, obsessive behaviour, poor coordination. difficulties with maths, misshapen head, sensory issues-didnt like loud noises, couldn't eat chewy food , didn't like sweets or fizzy drinks. We saw a huge range of specialists, from pediatricians, to food therapists, speech therapists, and eventually a physio who diagnosed him with dyspraxia-aged 7.
At the beginning of high school he was really struggling to cope at school-academically socially and emotionally. So we started on the track of specialists again . Had an MRI scan of his brain and an EEG. This showed that he had problems with his Myelin sheath. We were then referred to an endocrinologist. He was admitted to hospital for tests over a period of 3 days. They discovered that when dropping his blood sugar he did not feel any affects until it reached 1.5-most people are battling by this point. His blood was tested every few hours over the 3 days and that is how they discovered that his cortisol levels were unreadable. So for anyone reading this,who may have concerns about their child, The important factor in these tests was regularly testing his cortisol levels. At some points in the day his levels are normal .
When he was 6 he had endocrine tests, but they were all normal as the blood was taken just once in the day. His endocrinologist (who is my absolute hero), has told me that the testing and reading of cortisol tests is complicated and a very specialised area. My boy has been on medication now for a 18months and he is a different being. he has energy, he is growing, he is with the world! but of course having been diagnosed so late he still continues to have many developmental issues. I was wondering if anyone else has a similar story ? We knew from birth he was not well but it took 14 years to get any diagnosis or really to hear us!

Join the discussion

Join the discussion

Registering is free, easy, and means you can join in the discussion, get discounts, win prizes and lots more.

Register now