4.1ml prozac 4pm, tiny 1/4 of Clonidine 8pm 1 pill of Zithromax 4:30pm, probiotics 8pm, half a magnesium 8pm
Today was better. Ewen got a good solid 10 hours of sleep last night because I made him get into bed at 9pm and he was asleep by 9:30. Also I gave him very little Clonidine in hopes he would be happier the next day. When he got up this morning he said he felt good and was feeling positive. He was happy when he got home from school and said he had fun in PE because they were playing some really awesome beanbag game, which is really good.
He seemed to do less huffing today too. I went on the trampoline with him this evening and he was in a good mood and didn't seem depressed. He wasn't full of that Ewen spark and energy, but he had some of it and it was nice to see.
I had him go to bed at 8:50 tonight and he couldn't believe I was doing that to him. But he complied and I sat on his bed for a while and talked. He wanted to know what PANS was and I tried to explain it in my layman way. I told him that we saw that he was fighting off a bacteria when we did blood work last week, and now we think that when he had the flu and pneumonia last year, that it didn't completely go away. We think that his body was fighting it off the whole time and that was hard on his brain. Then with the stress at school, things flared up and what he normally could handle when he wasn't dealing with PANS, became too much to handle. He said, "And my brain basically collapsed."
I said, well, yeah.
I told him that we treated the symptoms with Prozac and Clonidine but now if we can get rid of the bacteria that is causing his brain so much stress, that maybe we won't need the Prozac and Clonidine anymore, and that in the future if there is a flare up, we will know what to do.
He said, I think I should get a blood test every year after this.
I said, yes, I agree. I also told him that this stuff apparently goes away as you get older. But as I was saying those words that I had read online, that didn't seem very logical to me, especially now that I have been reading all sorts of articles about how infection can affect the brain, such as pneumonic induced dementia.
I told him that after we treat the bacteria that we think things should go back to normal. I felt weird saying that. So I also said, there aren't going to be any miracles here, we are going to try this and we are going with the science and that is what works.
He said, OK.
But you can bet I'm hoping for a miracle here. But there is just so much you can promise a kid that has gone through as much as Ewen has these past few months.
It still took a long time to get him to sleep. We talked for half an hour then he wiggled around for a long time and flexed his leg and feet muscles in his OCD way, and I rubbed his feet. He went to sleep at 9:50, exactly an hour after I made him get in bed. I hope the antibiotics help his tics too.
Today was better. Ewen got a good solid 10 hours of sleep last night because I made him get into bed at 9pm and he was asleep by 9:30. Also I gave him very little Clonidine in hopes he would be happier the next day. When he got up this morning he said he felt good and was feeling positive. He was happy when he got home from school and said he had fun in PE because they were playing some really awesome beanbag game, which is really good.
He seemed to do less huffing today too. I went on the trampoline with him this evening and he was in a good mood and didn't seem depressed. He wasn't full of that Ewen spark and energy, but he had some of it and it was nice to see.
I had him go to bed at 8:50 tonight and he couldn't believe I was doing that to him. But he complied and I sat on his bed for a while and talked. He wanted to know what PANS was and I tried to explain it in my layman way. I told him that we saw that he was fighting off a bacteria when we did blood work last week, and now we think that when he had the flu and pneumonia last year, that it didn't completely go away. We think that his body was fighting it off the whole time and that was hard on his brain. Then with the stress at school, things flared up and what he normally could handle when he wasn't dealing with PANS, became too much to handle. He said, "And my brain basically collapsed."
I said, well, yeah.
I told him that we treated the symptoms with Prozac and Clonidine but now if we can get rid of the bacteria that is causing his brain so much stress, that maybe we won't need the Prozac and Clonidine anymore, and that in the future if there is a flare up, we will know what to do.
He said, I think I should get a blood test every year after this.
I said, yes, I agree. I also told him that this stuff apparently goes away as you get older. But as I was saying those words that I had read online, that didn't seem very logical to me, especially now that I have been reading all sorts of articles about how infection can affect the brain, such as pneumonic induced dementia.
I told him that after we treat the bacteria that we think things should go back to normal. I felt weird saying that. So I also said, there aren't going to be any miracles here, we are going to try this and we are going with the science and that is what works.
He said, OK.
But you can bet I'm hoping for a miracle here. But there is just so much you can promise a kid that has gone through as much as Ewen has these past few months.
It still took a long time to get him to sleep. We talked for half an hour then he wiggled around for a long time and flexed his leg and feet muscles in his OCD way, and I rubbed his feet. He went to sleep at 9:50, exactly an hour after I made him get in bed. I hope the antibiotics help his tics too.
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