Hi! Was wondering how Andrew was doing? Has he had his stitches out yet? How is your three year old son? Any diagnosis for him yet? Nothing new here. Just awaiting our next allowable appointment on Aug. 23, when we'll see a nuerologist. Hope all's well. ~ :wave: Tracy

Andrew is well and his stitches are gone. He'll have quite a scar though and there's no hiding it. He doesn't mind that nearly as much as I do! Timothy (3y.o.) hasn't had the ACTH stim test yet, though the endo. would like to do it soon. I'm kind of dragging my feet b/c sometimes I see signs of Addison's, and sometimes I don't. He doesn't seem to need nearly as much sleep as Andrew did, but he does periodically complain of feeling sick in the morning, plus there's the lack of weight gain. I kind of worry about having the test done too soon, in case he is borderline and the results don't show that there is a problem yet, you know?

Good Luck with the neurologist. Unfortunately, of every specialty we saw, we gained the least information from the neurologist. I just plain disliked him actually, but I'm sure that was more a personality thing than a specialty thing!

I'm not sure where you're located, but have you looked into seeing a diagnostician? The Children's Hospital in Philly had one, and he was supposed to be absolutely amazing. I would think most cities with reputable hospitals would have one on staff. I was surprised to learn that there is such a specialty, but apparently, these are physicians who specialize in looking at all the test results that have been compiled, do their own exams, and then after seeing the big picture are often able to come up with a diagnosis. The one at CHoP took months to get into, which is the biggest downside.

The other specialty we were looking into with Andrew before he ended up being hospitalized was a geneticist. However, that was because we clearly had growth issues at the time, which Travis isn't having, is he?

Jill

Hi!

No, no growth issues unless they are new. He is very tall and slender, and has continued to shoot up, but hasn't been able to gain any weight in the past eight mos.

You know, there are new items out on the market to help scars from surgery not show up as much. Jesse ran full speed into a doorstop when he was three years old, and still has a 3/4" line in the middle of his head from the stitches. My daughter has a worse scar on her shoulder. She had a dark mole her Grandpa (from her first adoptive family) worried about. He thought it had grown, and so we had it looked at, and the doctor removed it. The problem was, they hadn't left the stitches in long enough for this part of her body (where they skin wants to pull apart in opposite directions from the front and back of the body. They removed the stitches and the skin began to split again. We went immediately back in, and he redid the stitches, but there is a terrible, large scar atop her shoulder. I think I'll try these bandages that are supposed to reduce the visibility of that scar, as this summer she mentioned she didn't want a bathing suit that would show her scar.

I know what you mean about Timothy's having the test too soon to show the Addison's. I wonder the same thing about Trav. His potassium and sodium and cortisol are all looking fine, so I worry that he is on the way to Addison's, but not quite there. Still I wish they could catch it before he had to go through a crisis to have it show! I'm not looking at this neuro appointment as anything but a way to humour the doctor and make him realize that we are willing to cooperate in any way possible to get this solved. But my gut feeling is that it is an unnecessary detour. It is frustrating, because I'd rather get on with our second endo appointment. But this whole thing has been a holding pattern and a waiting game. It's been a "game" all right, which bothers me. Who says we should be playing games when it comes to our children's health. But that's what the insurance companies seem to require of us.

Does Timothy have allergies? I know Trav used to feel gaggy in the morning and not be able to eat for quite a while, until his throat had cleared from sinus drainage he'd had during the night.

It's funny what you say about the Diagnostition, because I've written on some boards about an idea I had that every doctor's office should have a diagnostition on staff. It seems to be an essential first step to giving out the proper treatment. I would think that with today's computer diagnostic software, one could do that even if untrained. They could put in symptoms and come up with a list of ailments for the doctor to consider. This would save the doctors time, and help them remember rare diseases they hadn't spent much time dwelling on in medical school. I think this person would be terrific to find. I'll have to look into it and see whether there is such a person in our area. Thank you, and God bless your family! ~ :wave: Tracy