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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.

Re: TAEMom
Aug 7, 2004
Dear Jill,

[U]Thank you [/U] for your descriptive and detailed letter! It was so nice of you to share. It must be difficult to think back on those hard times and to worry about facing more with your three year old son! I'm glad Andrew is doing so much better. I think you mentioned the doctor thought it would be very odd to think of two brothers both having such a rare malady? I hate to even bring up the possibility, but after what you've gone through, maybe this wouldn't sound so bad -- what about the possibility of Diabetes for your younger son? It may be rare for two brothers to share the same disease, but it is actually quite common for siblings and relations to have some autoimmune disease. My younger son was diagnosed with Type I Diabetes in January of this year. I mourned the loss of his good ole healthy, carefree self at first, and battled shock, since we have no known diabetics in the family. But all in all, it's been pretty manageable. His only symptoms were present for three days ahead of his diagnosis, so we had little time to prepare ourselves for his having a disease of any kind. He was terribly thirsty (especially at bedtime). Was occustomed to having a glass of milk before bed, but then started wanting water, too! Then there was the plentiful wetting of the bed that occured these last two to three days before we could bring him in on Monday (symptoms presented on Friday night for the first time). He was ten years old, and so the bed wetting was not a feature of his normal behavior. Thought I'd suggest this possibility to you. The test for Diabetes is real easy to run. In fact, knowing what I do now, if you had a friend with a glucometer, you might even just be able to give your son a soda or some candy and then take his blood sugar about fifteen minutes later. It shouldn't be any higher than 130-140 even after those sweets. But all of this you may have already ruled out. I'm SURE you're much more educated than I am, what with all the time you've had to try to figure out what was happening to your older son! I'm so sorry. I know how you must feel. What a wonderful thing to see him bloom and grow (finally!), as a healthy young lad should do! And to see his cheery, cute personality emerge must have been just stunning, and yet sad. It's sad to think it had been hidden all these years under some physical tourmoil that was not uncovered for you until recently. Thank you again for sharing. Now I know a bit more about who you are and what all you've been going through. Blessings to you and your family. Glad your daughter is O.K. Hope your little one will be all fixed up soon, too! And thank you for the well wishes for Travis! We will keep going to other doctors and trying to become semi-educated as to what tests to inquire about having. Seeing an osteopath Tues., another endo soon, and a neurologist Aug. 23. ~ :wave: Tracy

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