Charlie has been making a lot of progress and doing lots of new stuff, but her health issues are becoming overwhelming at the same time. I've known for months that she's been having seizures, but I couldn't get anyone to take me seriously. I finally swictched neurologists and he got her in for a LTM EEG which showed she's definitely having seizures. They were going to make us wait until August 22nd for her appointment to get her started on a new med. WHY do they think these things are not urgent!? It took me 3 months to convince them she need an EEG and now they want us to wait another month to start meds!? I got a call from a nurse in neurology who was "checking up" on Charlie since her EEG and I pretty much told her I was pissed off. She got the doctor to call in a prescription for Keppra, an anti-seizure med, which we started last night.
Normally I don't think I would have freaked out like that. I mean, I'm used to seeing her have seizures and honestly, they aren't all that alarming and they don't seem to upset her much. But about a month to a month and a half ago she started vomiting and just doing a poor job of moving her food through. This is a common problem with kids who have CP and Charlie has been like this for a long time, but she just got really bad, really fast and it freaked me out. I feel like the problem might be from her seizures getting worse, but that's just a theory. Her pedi has her on erythromycin, which is an antibiotic that is good for improving motility. It has helped SOME but not nearly enough.
I quit pumping. I didn't even come close to making my goal. There is a story behind it, which I will tell in another post. I wanted to do a blended diet, but with her motitlity problems, the only thing she's tolerating right now is nutramigen, which is like 10 times more foul than regular formula, which is nasty anyway. She tolerates it about as well as she tolerated breastmilk which is good. I'm hoping we will get her straightened out soon so I can get her off of this stuff. I have enough milk in the freezer to last her 2 weeks, plus she's receiving some donated milk, but if she's just going to puke it and waste it I'd rather save it for when she'll actually absorb it! I did try it again about a week ago and yup, she puked it...all day long. So for now she can puke the nutramigen. At least WIC pays for that. LOL
So my simple little baby (relatively anyway) has turned into a high needs one. I was just amazed that she was only on one med, didn't need a nissen or jtube, very few medical issues for kid with her diagnosis. Now she's on a buttload of meds that she gets around the clock (yes, even the middle of the night....goodbye sleep!), and she's still not improving!
I'm just hoping she doesn't end up needing major surgery or anything. A nissen would stop the vomiting, but it wouldn't make her move her food through faster. It would just make her uncomfortable and too full!
Oh and we did try food. She did so-so with it (about the same amount of vomiting anyway) but she wouldn't poop! She went 6 days but when she did go, it wasn't hard to pass or hard, and there wasn't a lot of it....so I don't really know what to think about that. And with the nutramigen she's got very loose stools that are leaving a burn rash on her. I don't know which is worse.
For now she'll stay on the nutramigen though because I'm trying to get GI to figure out what's wrong with her and I just know if I have her on anything other than formula, they are going to try to blame that first even though I know that has nothing to do with it. The only way to get them to actually address any problems is to do exactly what they say (no matter how silly) and if the problems persist THEN they take you seriously. So while I feel food would probably be better for her...at this point, I need people to see that it's nothing I'M doing.
So that's really only the half of it. I know if I updated more often I would have such long freaking posts, but things are crazy so I just get to it when I get to it. LOL