Today was a bit rough...

Today I took Peanut to see her therapist again. That was only the beginning of our day. She's great though. She's going to help us work things out, work with her on her anxiety issues, figure out what's going on, and be ready for problems that could arise at school. She's very nice, definitely works with kids, so that's great! She spent about 20 minutes with Peanut alone today. When we first saw her, it was just all the background, which in our case, is a lot.

Then we had to run over to the hospital to see her pulminologist. She last saw him in 3 weeks ago when she was in the hospital overnight. He came in and updated all her info, talked with her a bit, checked her respiratory, the normal stuff. Then he asked me to step into another room to talk to me without the kids there. As I told the medical student with him, I felt like I had been called to the principal's office in school.

He wanted to talk to me about what he thinks is going on. Basically, he has no idea. He said she is a very special and unique case. There is nothing about her that has presented as normal or routine. He talked about her sleep apnea, the obesity, endocrine issues, and then the possible seizures, plus the central apnea (which is when she stops breathing while she's not sleeping). As he told me, there is nothing that can cause all of this issues to occur in one person, unless there is something in the brain. Yes, sleep apnea can cause obesity, and vice versa, but when you add in the central apnea, and I think there was something else he said (there was a lot to digest), these things just aren't related by any other organ.

Dr. A. wanted the 48 hour EEG done, which is scheduled to take place in 3 weeks. We're doing an ambulatory one, so she doesn't need to be in the hospital. But she can't go to school for the 3 days. He wants to get a better picture of what is going on inside the brain. I guess that other doctors weren't so pushy on getting this done, they wanted to wait and see if she'd have another episode. He insisted that no, we won't wait for that! So that was good to hear.

Now we're starting to reach a point where we need to start looking at the more obscure and rare disorders or syndromes. He would like to get us just this little more info, from the EEG, so that we can start searching out experts that will be the best to help us. I have no idea where we're going to start. This is such an open road, but so limited too. Plus, I'm sure the insurance thing is going to come into play on all this.

This was the first time that any doctor has told us that they just don't know what is going on. But he also firmly believes that it's not food/calorie related. That was good to hear too! I've felt that way for a long time now, but I know not everyone has believed that.

We're also waiting for Dr. S., her pediatrician, to get approval (she's working on documentation for the HMO). This will hopefully get us into a specialist at CMH. This may be a big step in a direction we need. But again, who knows. I hate to even think it, but there's always that ONE person who has something doctor's have heard of. Or that ONE kid who's the first to have something. There's a reason that there's 1,000's of rare disorders. And we're talking about only a few hundred people having this things.

Sooo... we don't have any answers, just more questions to ask. But it was still productive, it's good to know that a doctor DOES see that there's more than what we can answer right now. And that we need to go further.