Various Mia news
It's time for some updates about Mia. These are always fun, right?
As per usual, we're still having problems with her eating. On the first day of school she visited her gastroenterologist, who prescribed Miralax for her constipation. We've been on and off with laxatives for years, mainly because they work strangely on Mia. We'll give her the recommended dosage for a bit, and it won't work. Then, a week or even two later, she'll have several days where she poops very often, with the poop becoming more and more mushy. It's very unpleasant for everyone concerned, because as the poop becomes mushy, we don't know she's pooping (when it's harder, we can tell), so she'll sit with it for a while and it gets up in every crevice (yuck) and then she's in danger of a urinary tract infection. Plus, cleaning her up so often makes the whole area very sensitive. The doctor suggested a different dosage and less at a time, which ... worked the same way. For the past few days we've been dealing with very yucky poops, which dehydrates her and wears her out. It's SCIENCE!!!! So that sucks.
According to her teachers, she's been doing well in school, which is nice. She's not being as evil as she can be, and they're trying to keep her in the regular ed. class for some time, as she seems to enjoy the other kids. We'll see how long that lasts. I'm planning on going in one of these days and following her around (discreetly, although Mia always spots me) to see what her day is like.
The biggest issues we're having these days (well, the eating thing is the biggest issue, but that's a constant, so it blends into background noise quite often) is her stiffness. Her high muscle tone means she's always fairly stiff, but recently it's gotten worse, and we're not sure why. Her PT can't figure it out, because whenever he stretches her, it only works for a very short period of time before she reverts. It's very frustrating, because when we're trying to change her, for instance, she refuses to straighten her left leg and it makes everything a lot harder, plus it seems to bother her more. It also makes walking a lot harder, because she doesn't want to straighten her left leg to take steps. We've dealt with this for years, but over the past month or so, it's become much tighter and more difficult to stretch the muscle. In the past we've given her Botox, but the efficacy of that seems to have diminished and I've never felt too comfortable doing it, mainly because it's not a long-term solution. I wanted to talk to her neurosurgeon about it, so today I went in for an appointment. Before we did that, however, we took her to a new therapist on Sunday.
This therapist was recommended by her gastroenterologist, as the therapist's son saw the doctor some years ago and that's how they know each other. The therapist practices the Anat Baniel method (which I guess is a subset of the Feldenkrais method). I've only read a little about this kind of therapy, but it involves working with the bones and teaching the body how to move, and it's very low-key - they don't believe in splints or orthotics or anything like that. Mia went to one session and we could see a bit of a difference - I'm not ready to proclaim it a miracle cure or anything, but she was definitely a bit looser and has remained so. We're willing to try almost anything, especially something that's non-invasive, so I told the therapist we'd be back. Apparently we're somewhat lucky that there's a therapist so close to our home (she's on the west side of Phoenix, so she's about 45 minutes away) - they're few and far between, and in some of the accounts I've read, people have driven 3 or more hours to see one.
So this morning I went to see her neurosurgeon, and of course he recommended Botox. I asked him about baclofen, which she's taken before (and didn't like), but he said he only likes to prescribe that when the tone is high all over, and as her right side is fairly loose, he doesn't think it would be a great idea. He also said there's a new physiatrist at the hospital and he wants her to take a look at Mia. We'll see what she has to say. As I mentioned, I'm not really sure I want to give her Botox, mainly because I don't think it will work enough to make it worth the while.
I'm not sure how this Anat Baniel practitioner is going to fly with Mia's PT. She already has a hippotherapist who has slightly different ideas about dealing with her than her home PT, and now I've added another voice to the chorus. I do know that despite years of therapy, she's not really getting much better - she can do a lot more than she used to, of course, but she's reached a plateau as far as her walking it concerned, and I don't know what to do about it. Her PT even mentioned that this cycle of high muscle tone that seems to come around every so often might preclude her from ever walking, which is very frustrating. I don't think Mia will ever walk on her own, but I do think she's capable of walking with some assistance in the future, so anything we can do now to help that along is something we will try. We'd be stupid not to, I think.
So that's some of what's going on with Mia these days. I know - so exciting, right? I mean, my good readers probably thought they could live happy, healthy lives without ever knowing anything about Anat Baniel. This is why you read - for the KNOWLEDGE!!!!!
As per usual, we're still having problems with her eating. On the first day of school she visited her gastroenterologist, who prescribed Miralax for her constipation. We've been on and off with laxatives for years, mainly because they work strangely on Mia. We'll give her the recommended dosage for a bit, and it won't work. Then, a week or even two later, she'll have several days where she poops very often, with the poop becoming more and more mushy. It's very unpleasant for everyone concerned, because as the poop becomes mushy, we don't know she's pooping (when it's harder, we can tell), so she'll sit with it for a while and it gets up in every crevice (yuck) and then she's in danger of a urinary tract infection. Plus, cleaning her up so often makes the whole area very sensitive. The doctor suggested a different dosage and less at a time, which ... worked the same way. For the past few days we've been dealing with very yucky poops, which dehydrates her and wears her out. It's SCIENCE!!!! So that sucks.
According to her teachers, she's been doing well in school, which is nice. She's not being as evil as she can be, and they're trying to keep her in the regular ed. class for some time, as she seems to enjoy the other kids. We'll see how long that lasts. I'm planning on going in one of these days and following her around (discreetly, although Mia always spots me) to see what her day is like.
The biggest issues we're having these days (well, the eating thing is the biggest issue, but that's a constant, so it blends into background noise quite often) is her stiffness. Her high muscle tone means she's always fairly stiff, but recently it's gotten worse, and we're not sure why. Her PT can't figure it out, because whenever he stretches her, it only works for a very short period of time before she reverts. It's very frustrating, because when we're trying to change her, for instance, she refuses to straighten her left leg and it makes everything a lot harder, plus it seems to bother her more. It also makes walking a lot harder, because she doesn't want to straighten her left leg to take steps. We've dealt with this for years, but over the past month or so, it's become much tighter and more difficult to stretch the muscle. In the past we've given her Botox, but the efficacy of that seems to have diminished and I've never felt too comfortable doing it, mainly because it's not a long-term solution. I wanted to talk to her neurosurgeon about it, so today I went in for an appointment. Before we did that, however, we took her to a new therapist on Sunday.
This therapist was recommended by her gastroenterologist, as the therapist's son saw the doctor some years ago and that's how they know each other. The therapist practices the Anat Baniel method (which I guess is a subset of the Feldenkrais method). I've only read a little about this kind of therapy, but it involves working with the bones and teaching the body how to move, and it's very low-key - they don't believe in splints or orthotics or anything like that. Mia went to one session and we could see a bit of a difference - I'm not ready to proclaim it a miracle cure or anything, but she was definitely a bit looser and has remained so. We're willing to try almost anything, especially something that's non-invasive, so I told the therapist we'd be back. Apparently we're somewhat lucky that there's a therapist so close to our home (she's on the west side of Phoenix, so she's about 45 minutes away) - they're few and far between, and in some of the accounts I've read, people have driven 3 or more hours to see one.
So this morning I went to see her neurosurgeon, and of course he recommended Botox. I asked him about baclofen, which she's taken before (and didn't like), but he said he only likes to prescribe that when the tone is high all over, and as her right side is fairly loose, he doesn't think it would be a great idea. He also said there's a new physiatrist at the hospital and he wants her to take a look at Mia. We'll see what she has to say. As I mentioned, I'm not really sure I want to give her Botox, mainly because I don't think it will work enough to make it worth the while.
I'm not sure how this Anat Baniel practitioner is going to fly with Mia's PT. She already has a hippotherapist who has slightly different ideas about dealing with her than her home PT, and now I've added another voice to the chorus. I do know that despite years of therapy, she's not really getting much better - she can do a lot more than she used to, of course, but she's reached a plateau as far as her walking it concerned, and I don't know what to do about it. Her PT even mentioned that this cycle of high muscle tone that seems to come around every so often might preclude her from ever walking, which is very frustrating. I don't think Mia will ever walk on her own, but I do think she's capable of walking with some assistance in the future, so anything we can do now to help that along is something we will try. We'd be stupid not to, I think.
So that's some of what's going on with Mia these days. I know - so exciting, right? I mean, my good readers probably thought they could live happy, healthy lives without ever knowing anything about Anat Baniel. This is why you read - for the KNOWLEDGE!!!!!
posted by Greg at
1:31 PM
2 Comments:
I said it before; you're a good daddy.
By
Roger Owen Green, at 23/8/11 5:33 PM
Thanks, sir. I don't always feel like it, because I hear about other parents trying so many other things with their kids, and I think "Dang, I should be doing that!" Man, there's not enough time in the day to do what needs to be done.
By
Greg, at 24/8/11 8:46 AM
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