A rush of blood to the head
Mia finished 40 hours "in the tank" on Tuesday - I meant to update this earlier, but it's been a busy two days. "In the tank" is my fun way of referring to her hyperbaric oxygen therapy. Now, I must explain this for those people who aren't blessed with the need to know about oxygen therapy. Hyperbaric oxygen therapy is pure oxygen at higher-then-normal pressure. It is supposed to supply oxygen to the places that need it, because oxygen increases blood flow and does all sorts of good things. It's useful in treating wounds because oxygen rushes blood cells to the area and heals it more quickly. It's supposed to be useful in people with head injuries because the oxygen goes to the brain and fires off the neurons. It obviously doesn't help with dead brain cells, but the cells that are "sleeping" are supposed to go nuts and stimulate activity. It's not supposed to help gross motor skills, but cognitively, it's supposed to be good. I know I keep saying "supposed to" because there's not a lot of scientific evidence that it actually works, just a lot of anecdotal evidence. We debated for a long time about sending her to the therapy because it costs upwards of $5000, but as we researched it, it did not appear that anything bad could happen, and it's only money, so what the hell.
The therapy chamber is interesting. It's shaped like a cylinder, about six feet in diameter and maybe ten feet long. Mia goes in and gets a collar with latex attached to it and a hole in the middle for her head. We put the collar over her head and then we attach a plastic hood to the collar. Air is then pumped into the hood. Adults get a mask, but she did not dig that the one day we tried it. The chamber is sealed and the pressure is raised, and we're off! She spent an hour or 90 minutes at a time in the chamber, and for me, at least, it was ridiculously boring. She's very well behaved and patient, but only if you pay attention to her most of the time - I took a book a few times, but she did not like that one bit, no sir! She wanted you looking at her so you could see how cute she was, and how impressive it was when she started screeching (happily) and of course, she can't sit up and the hood made her even more top-heavy than usual, so I had to keep propping her up. There was a television in there (well, it wasn't in there, but you could watch it through a porthole), but I usually kept it tuned to the Disney Channel, so that was no help. Occasionally other people in there (it fit six people) would bring in DVDs to watch, so that was nice, but usually, it was Disney. More on that below.
We've been watching her to see if the treatment has been working. One of the benefits is that it's supposed to make you sleep better. Check, at least for a while. Mia has never been a good napper (through the night she's fine, but not during the day), but the therapy was helping her sleep for 2-3 hours a day. Of course, the fact that it was 30 miles away and may have worn her out might have helped. One of the unfortunate side effects is that seizure activity might be increased. If the brain is working more, the bad parts are working more too. Over the past three or four weeks, Mia has been having worse seizures, and this is waking her up during her nap, which is kind of a pain. We got her blood taken yesterday, so we'll see next week if we have to increase her medication.
We have seen some positive side effects, or we think we have (again, nothing scientific, so we're in a gray zone here). She seems to be picking things up more easily when we teach her stuff. She struggles with internalizing new stuff (a post for another day) and it seems like it's getting a little easier for her. Recently she also learned how to drink from a straw, something we've been working on for months. She can't pick up a full cup with one hand, so drinking was very hard for her and we were hoping she could figure it out before the ridiculously dry summers we have here. So she suddenly started drinking from a straw a few weeks ago, which means she can actually drink more. So that's nice. Her left hand, which is usually clenched in a fist (with her thumb inside it) has seemed looser, but we're not sure if that's a consequence of the therapy. Like I said, it's tough to judge what the therapy is affecting.
She's done for at least two months now, and we're not sure if we're going back. Everyone else I met there praises the therapy to the skies, and occasionally, progress comes after the first round is finished, so we'll see. There was a woman in there who had eczema and thought it was helping. A woman who had had a masectomy also felt the therapy was helping. A 20-year-old who had been hit in the head with a jet ski a little more than two years ago and was in a coma for a few months had reached a point where it was difficult to tell there had been anything amiss with her. So we'll see with Mia.
As an epilogue, for all the parents out there, what's up with the Disney Channel? Okay, the Wiggles are just weird. The Koala Brothers? What do they do for a living, exactly? Do people pay them for their help? Are they independently wealthy? And don't you just want to smack Mitzi? And are the Koala Brothers the legal guardians of Ned and Mitzi? Ned's a wombat and Mitzi's a possum, so they're not Frank and Buster's kids. As for PB&J Otter, why did they name the first kid Peanut, the SECOND kid Jelly, and wait until kid #3 for Butter, especially when both Jelly and Butter are both girls? And why are they friends with Flick, who needs to be smacked around? And then there's the Higglytown Heroes (if you've been wondering where They Might Be Giants have been, they sing the theme song). EVERYONE in the town is a hero? The bus driver? The stock boy at the grocery? I know we're supposed to make everyone feel good about themselves, but that might be taking it a bit too far. Phew. Okay, I'm done. The Disney Channel - weird stuff.
Pictures of Mia in her many guises soon! Maybe tomorrow, maybe Saturday!
The therapy chamber is interesting. It's shaped like a cylinder, about six feet in diameter and maybe ten feet long. Mia goes in and gets a collar with latex attached to it and a hole in the middle for her head. We put the collar over her head and then we attach a plastic hood to the collar. Air is then pumped into the hood. Adults get a mask, but she did not dig that the one day we tried it. The chamber is sealed and the pressure is raised, and we're off! She spent an hour or 90 minutes at a time in the chamber, and for me, at least, it was ridiculously boring. She's very well behaved and patient, but only if you pay attention to her most of the time - I took a book a few times, but she did not like that one bit, no sir! She wanted you looking at her so you could see how cute she was, and how impressive it was when she started screeching (happily) and of course, she can't sit up and the hood made her even more top-heavy than usual, so I had to keep propping her up. There was a television in there (well, it wasn't in there, but you could watch it through a porthole), but I usually kept it tuned to the Disney Channel, so that was no help. Occasionally other people in there (it fit six people) would bring in DVDs to watch, so that was nice, but usually, it was Disney. More on that below.
We've been watching her to see if the treatment has been working. One of the benefits is that it's supposed to make you sleep better. Check, at least for a while. Mia has never been a good napper (through the night she's fine, but not during the day), but the therapy was helping her sleep for 2-3 hours a day. Of course, the fact that it was 30 miles away and may have worn her out might have helped. One of the unfortunate side effects is that seizure activity might be increased. If the brain is working more, the bad parts are working more too. Over the past three or four weeks, Mia has been having worse seizures, and this is waking her up during her nap, which is kind of a pain. We got her blood taken yesterday, so we'll see next week if we have to increase her medication.
We have seen some positive side effects, or we think we have (again, nothing scientific, so we're in a gray zone here). She seems to be picking things up more easily when we teach her stuff. She struggles with internalizing new stuff (a post for another day) and it seems like it's getting a little easier for her. Recently she also learned how to drink from a straw, something we've been working on for months. She can't pick up a full cup with one hand, so drinking was very hard for her and we were hoping she could figure it out before the ridiculously dry summers we have here. So she suddenly started drinking from a straw a few weeks ago, which means she can actually drink more. So that's nice. Her left hand, which is usually clenched in a fist (with her thumb inside it) has seemed looser, but we're not sure if that's a consequence of the therapy. Like I said, it's tough to judge what the therapy is affecting.
She's done for at least two months now, and we're not sure if we're going back. Everyone else I met there praises the therapy to the skies, and occasionally, progress comes after the first round is finished, so we'll see. There was a woman in there who had eczema and thought it was helping. A woman who had had a masectomy also felt the therapy was helping. A 20-year-old who had been hit in the head with a jet ski a little more than two years ago and was in a coma for a few months had reached a point where it was difficult to tell there had been anything amiss with her. So we'll see with Mia.
As an epilogue, for all the parents out there, what's up with the Disney Channel? Okay, the Wiggles are just weird. The Koala Brothers? What do they do for a living, exactly? Do people pay them for their help? Are they independently wealthy? And don't you just want to smack Mitzi? And are the Koala Brothers the legal guardians of Ned and Mitzi? Ned's a wombat and Mitzi's a possum, so they're not Frank and Buster's kids. As for PB&J Otter, why did they name the first kid Peanut, the SECOND kid Jelly, and wait until kid #3 for Butter, especially when both Jelly and Butter are both girls? And why are they friends with Flick, who needs to be smacked around? And then there's the Higglytown Heroes (if you've been wondering where They Might Be Giants have been, they sing the theme song). EVERYONE in the town is a hero? The bus driver? The stock boy at the grocery? I know we're supposed to make everyone feel good about themselves, but that might be taking it a bit too far. Phew. Okay, I'm done. The Disney Channel - weird stuff.
Pictures of Mia in her many guises soon! Maybe tomorrow, maybe Saturday!
posted by Greg at
4:02 PM
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