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Addison's Disease Message Board


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Re: TAEMom
Aug 6, 2004
Hi Tracy,
Andrew has had a rough time, and in hindsight, I'm wondering if this all began much earlier than we recognized. By age 1, he had fallen much lower on the growth charts, which could have been the beginning of the adrenal problems. I'll try to give you an abridged version of what's been happening, but it's a LONG saga.

At age 4, he was diagnosed with moderate/severe asthma and began treatment with relatively low dose inhaled steroids. Not too long after that, he began having what we thought were a lot of stomach viruses, as compared to his twin sister, and he frequently complained of nausea in the AM. He also seemed to require much more sleep than she did.

By age 5, he weighed the same as at his 4 yr. check-up, and I could barely get him to eat. (I would beg him to eat just one bite of *anything* he wanted - hot dogs at every meal, cake, anything!) The pediatrician (an osteopath actually) finally became suspicious and sent us to a gastroenterologist, who eventually did an endoscopy, which showed nothing. He was from Hopkins and one of the best in the country, but he was stumped and sent us on to a feeding specialist. He was put on Prilosec and an appetite stimulant and the nausea went away and he gradually began to eat more and gain a bit of weight. It must have been reflux according to the specialists. I was a little more concerned when he got a stomach virus that year, and had a seizure along with it - he was fairly old to be having febrile seizures for the first time. The pediatrician did take that seriously and had us see a neurologist for an EEG, which turned out to be normal.

By age 6, the meds were causing problems at school (he was lethargic and "foggy" according to his kindergarten teacher) and we decided to take him back off the meds and see how he did. He really had only gained 3lbs since his 4th bday, which wasn't normal. He did seem a little less foggy, off of them, but was still tired and he stopped eating again. He also came down with pneumonia 3X that school year and his asthma seemed to be generally poorly controlled (although he was never given oral steroids). Overall, from age 4 until he began treatment, every illness seemed to be major for him and it seemed as though he caught every virus out there - no immune system at all.

At age 7, when I took him in, he weighed in at the same weight as he had at his 4th bday, and he hadn't grown in height at all in a year. Finally, doctors began to realize that there was something wrong and that I wasn't exaggerating when I said that he wouldn't eat. The gastroenterologist took another look at his growth chart and said he didn't think it was a gastro problem, and suggested both an endocrinologist and a diagnostician.

The endo. ran what I thought was every test in the book, from thyroid to metabolic disorders to chromosomal studies and came up with absolutely nothing abnormal. All we knew was that for some mysterious reason, he had fallen from the 75th% in height at age 4 (which is ultimately where they plotted out that his height should be according to familial size), to the 10th% and from the 25% in weight to below the 2nd%. At that point, like you probably are, I was beside myself with worry and wondered if we would ever figure out what was wrong. In desperation, I made an appointment with the diagnostician at the Children's Hospital. They also did a bone age scan and discovered that his bone age was over 2 yrs. behind his chronological age, so there was another red flag.

In the meantime, Andrew came down with another stomach virus. He became frighteningly sick and the pediatrician saw him on the second day and told us to go to the ER for hydration. His BUN and glucose scores were off, so they decided to hospitalize him for a couple of days to rehydrate him. As soon as he got home from the hospital, I started searching the internet, using some of the terminology that they had used to describe him in the ER and Addisons disease popped up. SO, I called the endocrinologist, who agreed that it would be a good idea to run an 8am cortisol test, even though she was quite skeptical that that he had it. She cld. me 2 days later, practically in a panic, asking me how Andrew was. It turns out his cortisol level at that point was like 2. SHe immediately prescribed cortef, even before we got the ACTH stim. test done.

What a difference the medicine made! He went from being very mellow to being so much more animated. I thought he was just sort of boring, but it turns out that he had an actual personality! He didn't require 14+hours of sleep each nite! He ate! His asthma all but disappeared. He has had 3 ACTH stim. tests in the last 15mos. and all have conclusively showed adrenal insufficiency, although the debate has been primary v. secondary. MRI was normal. Growth hormone was borderline last year, but that can be depressed by low cortisol and since he has begun to grow in height since that test, it appears that the low cortisol caused the borderline score.

Bottom line is that his chief symptoms were lack of growth, due to loss of appetite, and extreme lethargy. Early on, there was also nausea and vomiting and there was always the extreme reaction to stomach viruses. We are currently watching the 3 yr. old, b/c his appetite is small and he hasn't gained much, if any, weight this year. He also frequently tells me that he is sick in the morning. Most recently, he has begun to urinate frequently during the day and soak through a diaper every night, after being dry for months. I read that that can be a sign of low cortisol, so we are leaning toward having the ACTH stim. test done for him sooner rather than later.

I am sorry that this post is so long, but I wanted to mention everything in case there is something in Andrew's history that someone might find helpful. I know just how awful it is to not have a diagnosis and to watch your child suffer. I hope you are finally able to get the test for your son. At the very least, it can give you peace of mind.

Jill





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