There's a lot to report, but the overwhelming message is that Lily is doing AWESOME! We started the anti fungal medication yesterday (to get the yeast out of her system). We have seen immediate results! We were warned she might turn into a "devil child" while she is detoxing, but so far all we have seen is a HUGE spurt in her speech and overall interaction. Her attention span also seems to be improving. Today she has said all kinds of words, and instead of her usual portion of the word, she is actually able to say more whole words now (not to mention spontaneous words)! This was my hope for this particular medication and it is working!!!
I am very excited and have very high hopes for the immediate future. We started Lily at an additional OT office a couple of weeks ago because I was worried about insurance coverage (we are at our limit for visits this year and the new office cost is covered by the state). I spoke with our insurance and supposedly the new autism bill kicks in after our visits are capped, but they couldn't give me anything in writing to guarantee this, so for right now I'm going to wait and see if they will actually pay. So for now Lily is having OT 5 times a week (4 hours). I really love the office that she has been going to, but this new office seems to offer some great things as well. I think the combination of the two will be wonderful for Lily and she really seems to enjoy going there.
Lily went 12 days seizure free. She had a more intense seizure on 3/22, waking from a nap at about a million degrees, inconsolable for 10-15 minutes followed by her turning ice cold and then her temperature went back to normal. She had a much milder seizure the following day, but none since. I have been really racking my brain to figure out what is the trigger for her. I'm thinking it's exhaustion. She doesn't get enough REM sleep, because she's always up in the night, except following a seizure. When she's having seizures she sleeps better because they wear her out, but then they start again when she's not sleeping as well from not having them. We started giving her melatonin during the day for naps, so she now takes close to 3 hour naps. I think that probably really helped to keep them away. The day she had her seizure she was in the sun playing for 2-3 hours at the pool. I'm thinking that maybe the sun wore her out a little as well, I know everyone there really felt as though they could use a nap!
We started Lily on magnesium, to help her metabolize her B6. It is suppose to help her sleep so I've been giving her some at bedtime but it makes her restless instead. This shouldn't be a big surprise to me, since she had the same reaction when I increased the epsom salt in her bath (it also has magnesium). So now I will alter when she gets that during the day and see if that helps. We tried her MB12 shot again, at half a dose after her 1 week increase of folic acid, but she still did a lot of spinning, so I haven't given her any additional yet.
All in all I must say that Lily is doing so fabulous. She really is losing her diagnosis. Children CAN recover from autism (though not all do), we are just so blessed to be able to watch it happen to our little girl.
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