Mia's medical issues ... resolved?
Ha, ha, no. That would be something, wouldn't it? But you'll recall that the last time I wrote extensively here, I was writing about Mia's medical problems and how we were going to make the rounds of the doctors to get her checked out. Well, we did, but I didn't really expect much, and I didn't get much. Mia's brain is too damaged and they know so little about brains in general, so whenever she has issues, it could be several different things, and it's too hard to pin down. Usually, the best we can hope for is vague theories about what's causing her problems. Why yes, it is frustrating.
Our first stop was Mia's gastroenterologist, because she was always vomiting. The doctor checked her out and couldn't find anything obviously wrong with her, and she told us that it her vomiting was probably tied to her seizures. She's already on Zantac for her acid reflux (which is pretty mild, but still there), and because she was pooping pretty well, the vomiting wasn't caused by constipation. So on we went!
Our next stop was the neurosurgeon who installed her shunt. Her shunt was placed in her head to drain the fluid that swelled her head right after her surgery, and it's been there ever since. It's not actually inside her brain, which is where shunts are often placed, it's outside her brain, because her fluid was between her brain and her skull. Her neurosurgeon told us a few years ago that her shunt wasn't working anymore because she didn't need it, but removing it would mean cutting her head open, and he said it wasn't doing anything to her, so why not leave it in? Shunt malfunction does lead to vomiting (among other things), so we figured we should probably get the shunt checked out even though we were pretty sure her vomiting had nothing to do with the shunt. They gave her an MRI, which turned out to be pretty interesting. The doctor showed me how Mia's right ventricle had filled up with fluid, mainly because her brain tissue on the right side had atrophied so much that it created holes in the brain area, and the brain does not like holes. So the fluid filled the void. She hadn't had an MRI in seven years, so the doctor was a bit surprised to see the giant fluid-filled sac, but he said that the brain has to stabilize in some way, and this is how it did it. Draining the fluid would cause more holes, which would really screw Mia up. So her vomiting wasn't caused by the shunt, which we figured. Still, it was nice to get an MRI. She probably needed one.
Our next stop was her neurologist, who also wasn't much help. We described her seizures to him, but because he never sees them, it's hard for him to get a handle on them. By the time we saw him, her seizures had abated to a degree and she wasn't vomiting as much, so it wasn't as urgent to get her checked out. He did tell us to see her pediatrician because she could be seeing some effects of puberty, but he didn't want to adjust her meds until he had more to go on. He did say he wanted her to get an EEG, which she hasn't had in a while, but last week the hospital didn't call to schedule it, and when I called them on Friday, they didn't call back. Not surprising, that. It would be nice if we could get a good reading on an EEG.
Then, last week, I took her to her psychologist. We took her to one when she was having eating problems, but then we decided to get a g-tube installed, so that wasn't too much of an issue anymore (she's still having eating problems in that she won't eat, but right now, she doesn't have to, and we'll cross that bridge when we come to it). Then we took her to see the doctor when she was pulling her hair out, and she prescribed Zoloft. We gave it to Mia for two days and she that was when she started having the really bad seizures, so we immediately stopped giving it to her. We thought it might have something to do with the seizures, but two weeks later, she was still having them, so we weren't sure if there was any connection. The doctor said that it was probably a big factor, and she also didn't want to put Mia on anything else - she said if Zoloft - which is mild - caused her to have seizures, then anything else would too. So we decided to keep her off any anti-anxiety meds for now, especially because she seems to have stopped pulling on her hair so much. I don't know if the Zoloft caused all the seizures, but it's certainly possible that the drug didn't clear out of her system for a few weeks even though we barely gave her any of it.
So now we're waiting on the EEG (I'll probably have to call them again today), and we need to go back to her gastroenterologist, and we need to take her to the physiatrist to see about more Botox injections, and we need to visit her pediatrician about the puberty thing. The doctor visits never end!!! Her seizure/vomiting activity reached a peak in the first week in October, and I theorized that she needed some rest. We visited many of these doctors over fall break, but she was also able to sleep a lot and recharge, and that seems to have helped. Mia gets exhausted simply getting through her day, so that creates situations where she's more susceptible to seizures, which makes her more susceptible to vomiting. I told the people at her school that I wasn't going to wake her up anymore - to get her to school on time, I need to get her up between 6.30 and 6.45 in the morning - because her sleep was more important and if she missed a little bit of school, so be it. I need to take Norah to school at 8 or so anyway, so I'd have to wake Mia up at 7.30, but that extra hour is important. She's still having smaller, "regular" seizures (the kind she's had since her accident), and she still throws up once a week or so, so everything isn't over, but it's a lot better. I kind of figured that she might need a lot of rest - prior to fall break, she was looking really tired all the time - and it helped a lot. It's always good to recharge!
So her medical problems aren't really resolved, but they've eased up a bit. That's always nice. She's getting another break this week because of Thanksgiving, and then she gets another break at Christmas, so maybe she can get more rest and feel much better. And, of course, we'll keep taking her to various doctors! That's always fun!
Our first stop was Mia's gastroenterologist, because she was always vomiting. The doctor checked her out and couldn't find anything obviously wrong with her, and she told us that it her vomiting was probably tied to her seizures. She's already on Zantac for her acid reflux (which is pretty mild, but still there), and because she was pooping pretty well, the vomiting wasn't caused by constipation. So on we went!
Our next stop was the neurosurgeon who installed her shunt. Her shunt was placed in her head to drain the fluid that swelled her head right after her surgery, and it's been there ever since. It's not actually inside her brain, which is where shunts are often placed, it's outside her brain, because her fluid was between her brain and her skull. Her neurosurgeon told us a few years ago that her shunt wasn't working anymore because she didn't need it, but removing it would mean cutting her head open, and he said it wasn't doing anything to her, so why not leave it in? Shunt malfunction does lead to vomiting (among other things), so we figured we should probably get the shunt checked out even though we were pretty sure her vomiting had nothing to do with the shunt. They gave her an MRI, which turned out to be pretty interesting. The doctor showed me how Mia's right ventricle had filled up with fluid, mainly because her brain tissue on the right side had atrophied so much that it created holes in the brain area, and the brain does not like holes. So the fluid filled the void. She hadn't had an MRI in seven years, so the doctor was a bit surprised to see the giant fluid-filled sac, but he said that the brain has to stabilize in some way, and this is how it did it. Draining the fluid would cause more holes, which would really screw Mia up. So her vomiting wasn't caused by the shunt, which we figured. Still, it was nice to get an MRI. She probably needed one.
Our next stop was her neurologist, who also wasn't much help. We described her seizures to him, but because he never sees them, it's hard for him to get a handle on them. By the time we saw him, her seizures had abated to a degree and she wasn't vomiting as much, so it wasn't as urgent to get her checked out. He did tell us to see her pediatrician because she could be seeing some effects of puberty, but he didn't want to adjust her meds until he had more to go on. He did say he wanted her to get an EEG, which she hasn't had in a while, but last week the hospital didn't call to schedule it, and when I called them on Friday, they didn't call back. Not surprising, that. It would be nice if we could get a good reading on an EEG.
Then, last week, I took her to her psychologist. We took her to one when she was having eating problems, but then we decided to get a g-tube installed, so that wasn't too much of an issue anymore (she's still having eating problems in that she won't eat, but right now, she doesn't have to, and we'll cross that bridge when we come to it). Then we took her to see the doctor when she was pulling her hair out, and she prescribed Zoloft. We gave it to Mia for two days and she that was when she started having the really bad seizures, so we immediately stopped giving it to her. We thought it might have something to do with the seizures, but two weeks later, she was still having them, so we weren't sure if there was any connection. The doctor said that it was probably a big factor, and she also didn't want to put Mia on anything else - she said if Zoloft - which is mild - caused her to have seizures, then anything else would too. So we decided to keep her off any anti-anxiety meds for now, especially because she seems to have stopped pulling on her hair so much. I don't know if the Zoloft caused all the seizures, but it's certainly possible that the drug didn't clear out of her system for a few weeks even though we barely gave her any of it.
So now we're waiting on the EEG (I'll probably have to call them again today), and we need to go back to her gastroenterologist, and we need to take her to the physiatrist to see about more Botox injections, and we need to visit her pediatrician about the puberty thing. The doctor visits never end!!! Her seizure/vomiting activity reached a peak in the first week in October, and I theorized that she needed some rest. We visited many of these doctors over fall break, but she was also able to sleep a lot and recharge, and that seems to have helped. Mia gets exhausted simply getting through her day, so that creates situations where she's more susceptible to seizures, which makes her more susceptible to vomiting. I told the people at her school that I wasn't going to wake her up anymore - to get her to school on time, I need to get her up between 6.30 and 6.45 in the morning - because her sleep was more important and if she missed a little bit of school, so be it. I need to take Norah to school at 8 or so anyway, so I'd have to wake Mia up at 7.30, but that extra hour is important. She's still having smaller, "regular" seizures (the kind she's had since her accident), and she still throws up once a week or so, so everything isn't over, but it's a lot better. I kind of figured that she might need a lot of rest - prior to fall break, she was looking really tired all the time - and it helped a lot. It's always good to recharge!
So her medical problems aren't really resolved, but they've eased up a bit. That's always nice. She's getting another break this week because of Thanksgiving, and then she gets another break at Christmas, so maybe she can get more rest and feel much better. And, of course, we'll keep taking her to various doctors! That's always fun!
posted by Greg at
8:23 AM
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