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.
Saturday, March 28, 2009
Thursday, March 19, 2009
3-19-09
Lily is really so much fun to be around. Her eye contact and social interaction have improved so much that I would think it would be hard to distinguish her from her peers in those regards. She does however still have her autistic traits. She spaces out and it is hard to get her attention, particularly when we are outside. She is still spinning and doing her "eye thing". Other than those things, speech is her biggest hurdle and really sets her apart from the rest of her peers. It hurts me that she cries to me and can't let me know what's wrong, but she really tries hard to get her wants communicated. I have to keep reminding myself of how far she's come and how fast. The past 6 months have really been a testament to what the Lord can do.
Lily has been bustin' a groove more than ever. I really think dance will be a big part of her life. It's a way for her to be able to express herself, since the words haven't developed yet. Today she did something AWESOME. She made a train out of her blocks and pushed it along the floor and said "Choo Choo". Pretend play just can't be taught, and this is a very big milestone for her.
Lily has been doing pretty well with a fork. We've been doing the "time out" thing. She seems to understand the concept. Yesterday she was in the refrigerator (again) after she had already had a warning (she just likes to stand in there for some reason) and when I started to yell at her and she immediately grabs a pudding and hands it to me, like "I came in here to get this" and so I ask her if she wants to eat it and she says "ssss" (that's her yes). She doesn't even care for pudding that much, it was a left over from the one she didn't want earlier! But she ate half of it anyway, acting as if that was her plan the whole time. (it did get her out of the time out I would have put her in!)
We went for more blood work a few days ago. We'll get all the results on the 6th.
Lily has been bustin' a groove more than ever. I really think dance will be a big part of her life. It's a way for her to be able to express herself, since the words haven't developed yet. Today she did something AWESOME. She made a train out of her blocks and pushed it along the floor and said "Choo Choo". Pretend play just can't be taught, and this is a very big milestone for her.
Lily has been doing pretty well with a fork. We've been doing the "time out" thing. She seems to understand the concept. Yesterday she was in the refrigerator (again) after she had already had a warning (she just likes to stand in there for some reason) and when I started to yell at her and she immediately grabs a pudding and hands it to me, like "I came in here to get this" and so I ask her if she wants to eat it and she says "ssss" (that's her yes). She doesn't even care for pudding that much, it was a left over from the one she didn't want earlier! But she ate half of it anyway, acting as if that was her plan the whole time. (it did get her out of the time out I would have put her in!)
We went for more blood work a few days ago. We'll get all the results on the 6th.
Wednesday, March 11, 2009
3/12/09
Lily has been sick with a cold lately (us too) so her whole schedule is off (not that she really had one, but it's been wackier than usual). I've been contemplating getting her evaluated again to see where she is at since she is doing so well, but I don't think it would satisfy anything except my own curiosity. She hasn't had many seizures lately, thankfully.
We brought her to see the wholistic dr. again on 3/9, and he explained all of her test results from her stool and urine. It was a lot to take in, and I'm still trying to sort things out. They took some blood too and will have to take more next week to satisfy all the testing that is needed. They did find some yeast, so we will be putting her on some antifungal medication, as well as increasing her folinic acid so that she will better tolerate her MB12 shots. I may eventually try the diet with her, but we'll see. My first goal is to get her off the bottle, we'll see how that goes.
She is back to sleeping really crappy now. Last night she was up from about 2:15am to about 5:45am. So she slept from 8:15pm to 2:15 then from 5:45 to 10:45. Total sleep time is ok, but not an ideal situation! She went down for a nap today at 4:45pm so she won't go to bed till late tonight, but at least if she goes to bed late she has a better chance at sleeping through. Yesterday we did no nap (because she got up at 11am after another similar night) and it didn't help her sleep at night. We've tried every schedule there is, nothing seems to work...at least not for long. She was funny last night though. I was soooo trying to sleep and she was doing everything she could to get me to stay up. As I drifted in and out of consciousness she would open my mouth wide with both hands and hold it open with all her might. She would roll on me, climb on me, tickle me, and the best one...kiss me (she woke me up with 5 in a row!). She really does try to fall back asleep, but even with the melatonin it is useless.
She hasn't had many seizures at all this week. We've been home a lot more though I'm not sure that has anything to do with it. Though maybe the lack of seizures has been triggering her horrible sleeping pattern? When she was having them a lot was when she'd sleep well. I guess that makes sense. I have to make her an appointment with a neurologist, and more than likely have a 24hr EEG done. I want to avoid that at all costs. The hour long one we did was the worst hour of my entire life, and I could just not imagine doing that for 24hrs, though if we could capture her sleeping would probably be a good thing.
Anyway, Lily is doing very well with her eye contact and experience sharing. She really seeks out my company. She's sought me out before to help her with things or to use me to get what she wants, but lately she has just been taking me to where she is to just sit with her. She is doing well on the potty, though it'll be a long while before she's potty trained. She amazes me daily with new skills and understanding. The other day she put away all the silverware, all by herself. She has been throwing appropriate things in the garbage (on her own) and can follow two step directions usually fairly easily. She still hasn't lined up any more toys!!! She has shown no interest in any of her figure sets except for her mickey ones that she plays with in her Mickey Club House (which she uses very appropriately). She has been spinning more and dragging her head across the floor(that's a new one) and of course is still looking at her hands a lot. She seems to substitute one action for another. All in all, steady progress.
We brought her to see the wholistic dr. again on 3/9, and he explained all of her test results from her stool and urine. It was a lot to take in, and I'm still trying to sort things out. They took some blood too and will have to take more next week to satisfy all the testing that is needed. They did find some yeast, so we will be putting her on some antifungal medication, as well as increasing her folinic acid so that she will better tolerate her MB12 shots. I may eventually try the diet with her, but we'll see. My first goal is to get her off the bottle, we'll see how that goes.
She is back to sleeping really crappy now. Last night she was up from about 2:15am to about 5:45am. So she slept from 8:15pm to 2:15 then from 5:45 to 10:45. Total sleep time is ok, but not an ideal situation! She went down for a nap today at 4:45pm so she won't go to bed till late tonight, but at least if she goes to bed late she has a better chance at sleeping through. Yesterday we did no nap (because she got up at 11am after another similar night) and it didn't help her sleep at night. We've tried every schedule there is, nothing seems to work...at least not for long. She was funny last night though. I was soooo trying to sleep and she was doing everything she could to get me to stay up. As I drifted in and out of consciousness she would open my mouth wide with both hands and hold it open with all her might. She would roll on me, climb on me, tickle me, and the best one...kiss me (she woke me up with 5 in a row!). She really does try to fall back asleep, but even with the melatonin it is useless.
She hasn't had many seizures at all this week. We've been home a lot more though I'm not sure that has anything to do with it. Though maybe the lack of seizures has been triggering her horrible sleeping pattern? When she was having them a lot was when she'd sleep well. I guess that makes sense. I have to make her an appointment with a neurologist, and more than likely have a 24hr EEG done. I want to avoid that at all costs. The hour long one we did was the worst hour of my entire life, and I could just not imagine doing that for 24hrs, though if we could capture her sleeping would probably be a good thing.
Anyway, Lily is doing very well with her eye contact and experience sharing. She really seeks out my company. She's sought me out before to help her with things or to use me to get what she wants, but lately she has just been taking me to where she is to just sit with her. She is doing well on the potty, though it'll be a long while before she's potty trained. She amazes me daily with new skills and understanding. The other day she put away all the silverware, all by herself. She has been throwing appropriate things in the garbage (on her own) and can follow two step directions usually fairly easily. She still hasn't lined up any more toys!!! She has shown no interest in any of her figure sets except for her mickey ones that she plays with in her Mickey Club House (which she uses very appropriately). She has been spinning more and dragging her head across the floor(that's a new one) and of course is still looking at her hands a lot. She seems to substitute one action for another. All in all, steady progress.
Thursday, March 5, 2009
3/4/09
Lily had a pretty good day today. No nap, but not crabby at all, except for the usual tantrum here and there (as is with any two year old :). I was wondering why she had such a good day with no nap and then it dawned on me...not one seizure today! Then I tried to think of what the difference might have been but I couldn't think of any. She was up from 7:15am to about 8:30pm-ish and was not crabby and ran all over the place the whole day! What a difference from yesterday (she awoke from her nap with a small seizure and was a huge challenge the rest of the day). She either has good days or bad, there doesn't seem to be much of an inbetween. One amazing thing I did notice this week is that she didn't have any interest in lining up her toys! This has been such a staple in her daily routine since as far back as I can ever remember and now, nadda! She has been spinning more, but when she goes to OT or to the park she seems to be ok with that.
Lily can now count to three (sort of). If you say one, she'll say two and a few times has said three but mostly when you ask her to say three she'll say go, lol.
Please keep praying that the seizures go away and don't come back!
Lily can now count to three (sort of). If you say one, she'll say two and a few times has said three but mostly when you ask her to say three she'll say go, lol.
Please keep praying that the seizures go away and don't come back!
Sunday, March 1, 2009
3-1-09
On wed feb 25th Lily had a small seizure while we were in speech therapy. The therapist definitely thought something wasn't right, we both were thinking the same thing. It didn't last long but Lily seemed very tired after therapy (she had just woken up and had slept well the night before) and was out of sorts the rest of the day, wouldn't take a nap and was generally very crabby. It's hard because I really just wanted to bring her home for the day, but of course, I had to bring her to OT.
We started her MB12 shot on thurs. the 26th. Results: waking up for the day at 5am friday, 5:30am sat. and 5:10am sunday morning (today). Napping has been at a minimum, if at all. She wakes up in good spirits, seems more refreshed....it's just FAR too early! But she did sleep through about 9 hours each night. Maybe I'll try to put her down a little later so she sleeps till 6. She has been spinning like crazy, which she hasn't done for a long time. I think she had another seizure on friday and Anthony said she had one today (possibly 2). Due to the spinning we upped her folinic acid to two capsules starting yesterday (that is suppose to help I guess). We are going to stop the shots for the next week and keep on her increased dose of folinic acid and then maybe start again. (writing this info is really just record keeping for me).
I bought her some new books and VOILA, she actually will sit and listen to the story and seems to enjoy my reading to her. This is a complete first for the girl who is a speed page turner. I have actually had to tell her to turn the page some of the time! There really does seem to be something to this theory of new stuff = showing new skills. She doesn't sit and listen to stories with her thousands of other books (and hardly ever did), just the new ones.
We have been having Lily watch The Letter Factory(a DVD that teaches about the alphabet and the sounds that each letter makes) and she has been loving it and participating in a lot of the letter sounds. She's also really getting good at acting out parts of different shows or movies that she loves, especially Madagascar 2. It's really very comical.
We started her MB12 shot on thurs. the 26th. Results: waking up for the day at 5am friday, 5:30am sat. and 5:10am sunday morning (today). Napping has been at a minimum, if at all. She wakes up in good spirits, seems more refreshed....it's just FAR too early! But she did sleep through about 9 hours each night. Maybe I'll try to put her down a little later so she sleeps till 6. She has been spinning like crazy, which she hasn't done for a long time. I think she had another seizure on friday and Anthony said she had one today (possibly 2). Due to the spinning we upped her folinic acid to two capsules starting yesterday (that is suppose to help I guess). We are going to stop the shots for the next week and keep on her increased dose of folinic acid and then maybe start again. (writing this info is really just record keeping for me).
I bought her some new books and VOILA, she actually will sit and listen to the story and seems to enjoy my reading to her. This is a complete first for the girl who is a speed page turner. I have actually had to tell her to turn the page some of the time! There really does seem to be something to this theory of new stuff = showing new skills. She doesn't sit and listen to stories with her thousands of other books (and hardly ever did), just the new ones.
We have been having Lily watch The Letter Factory(a DVD that teaches about the alphabet and the sounds that each letter makes) and she has been loving it and participating in a lot of the letter sounds. She's also really getting good at acting out parts of different shows or movies that she loves, especially Madagascar 2. It's really very comical.
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