Not too much to update, results, but no answers

We did the urine testing a couple weeks ago, and the results were nothing. They didn't find anything wrong with any of the hormones they tested for, all levels were normal. I finally talked to Dr. S. today, we'd been playing some phone tag, and I just took a break from calling too. Anyway, she said they were looking for any evidence of tumors, which the urine test showed there wasn't any evidence of it. She's still going to look into doing the u/s of the adrenal glands, but she said the odds of there being anything there, based on the normal urine results, are almost impossible.

So once again, we're without answers. I've run out of things to even try and research. We do have the second opinion endocrinologist appointment next month, although I'm not holding my breath for any answers there either.

What's even more frustrating now is that with the warmer weather, we've been doing even more. We spent 4 hours at the Botanical Gardens last week, walking all over. We've been being more active with her, outside, she's in play camp now, and still no results. She's even stopping herself from eating everything, on her own. Not always, but it's progress.

The only positive thing is that something in her mind or body has been switched, and she's been staying dry at night. So far this month, in 25 days, she's probably only been wet in the morning (or middle of the night) about 3-4 times. And not only that, we were waking her up around midnight to go potty, and we haven't done that for the past 4 nights, and she's still waking up dry. This is such a huge step!

Anyway, there isn't much more to say...... as always, please feel free to comment with ideas, suggestions, or anything else that you can think of! =)

I'm really lost as what to do with my daughter's health

Well, since I haven't written much on here really, why not delve into this topic! My DD is 5 1/2 years old, and is about 70 lbs. She has gained about 40 lbs. in the past 2 years. We've been seeing numerous doctors, she's been hospitalized twice, has sleep apnea, is on BiPap to sleep, had her tonsils/adenoids removed, deals with asthma, takes meds for that, has vision problems, possible neurological issues, and yet nobody has been able to find anything wrong with her.

We've been told by the endocrinologist that it must be environmental, since the testing for Cushing's syndrome came back negative. But she's not tested for anything else. Keep in mind, she has a twin brother who is a bit more active, although eats a little bit more, and is barely 40 lbs. Yet they want us to cut back on her food, restrict her diet, and get her more active. So, we've been doing those things, trying to work on things, and she continues to gain. She hasn't lost a single ounce! Nothing!!

Instead, she's continued to gain and they want us to keep trying, even though they're "concerned about this continued weight gain." Well, no shit!! We're concerned too!! Why do you think that we keep asking for help?!?! Yet, cuz of the red tape of HMO's, medical groups, and lack of flexibility, we can't get in to see another endocrinologist for almost 4 more months! Yes, there's another one who can see her next week, but it won't be approved.

I know we can pay out of pocket, but we have insurance, we have been asking for help, we've been working with her. So why should we have to pay $1,000's of dollars to get our child help!?!? Why is it so hard to look at her and say "Yes, there's more tests we can do!"

I wanted to put this out there to start getting ideas and possible suggestions. I decided to start this blog for that reason as well. And it's come to this point tonight cuz of her breathing struggles again tonight. Just sitting up, not doing anything, her O2 levels are in the lower 80's, with a heart rate around 130-150's. And when she's sleeping her O2 will stabilize at 98-100, but it's because she's on oxygen. But her heart rate is still 120-140!!

I just want my peanut to be able to enjoy life!! She's 5 years old, she should be able to sit on the sofa without me hearing her breathing from the other room. I'm afraid of what will happen one day. I'm terrified of her heart giving out, something fatal happening. I want someone to help us, and help her. Or at least tell me that there is nothing wrong with her, it's us, and we just have to completely stop her eating, whatever. I spend hours researching possible things, but I have no idea what it could be.

I guess I should wrap this up for tonight... it only depresses me even more. I want my healthy, happy, playful peanut back!!