This morning Ewen woke up on his own and did some video editing on his computer. He is re-editing the video that Mike put together of the soccer tournament (all the big moments and goals) and putting his favorite techno music under it (rather than opera) and putting troll faces over his friend's (and himself) when scoring the goals.
He was fine going to school and he read a Percy Jackson book about Greek Heroes out-loud to his carpool girl-friend and his older sister and me. It is a pretty good book. He read during the whole drive there and I was glad that it was a car full of nerds because his reading was appreciated. When we got there his friend bolted to the classroom like she always does, and he stretched on the back seat and grumped, mumbling and wondering why he always suddenly got so tired when he got to school. I reminded him that he always feels better as the day gets going. He had hardly any huffing this morning, but I think he tries extra hard not to when he is around his friends. But I am still hoping that the antibiotics will help the huffing and get rid of it.
We have CBT this afternoon then he has a soccer game at 6:30 tonight that we are all going to go to. It was a pretty good morning. We will see how the rest of the day goes :)
Today I was thinking about why I didn't go with his pediatrician's suggested PANDAS diagnosis at first. I suppose it was because he had never had strep before and I didn't know much about PANS so it didn't seem right to put him on antibiotics for a long time if he had never had strep. Also, I was very concerned about getting him comfortable and he was seeing a specialist, which was the psychiatrist and I was trusting him to know what to do best as he is supposed to be one of the very best, if not THE best child psychiatrist at the University. So I was doing what he told me to do and when I mentioned PANDAS or PANS he said, "Has Ewen been sick before this happened?"
me: "No"
him: "Then it's not PANDAS or PANS."
That was the end of that conversation. I didn't remember that Ewen had the flu then pneumonia 5 months before that, and I didn't know it could be that long ago and still be PANS. I didn't realize that he hadn't been sick since then because his immune system was in overdrive. I didn't realize that the low grade fever he had randomly even though he wasn't sick, was because his immune system was in overdrive. I didn't put it together that his grumpy and weirdly-negative behavior change over the summer was likely due to the PANS. I didn't realize that there can be flare-ups induced by stress (like his teacher being a bit much or his getting overwhelmed with school work which is also a part of PANS). I didn't realize that the sudden, bizarre onset of panic attacks, his fear of water, and of choking on his food, were the most major symptoms of PANS. So now that we know, I wonder if almost a year after he has the flu and pneumonia, that the antibiotics will still help or if the damage is done beyond repair? I can't think that negatively and the nurse at his pediatrician's office was so positive. She pointed out the high numbers on the printout of his blood work and said "We have seen amazing results with treatment when we see high numbers like these."
That was very uplifting to me. I have hope again. Mike said that he has found that if he doesn't let himself get too high about something, then he doesn't get as low. So I am trying not to get too high about the possibly help of the antibiotics restoring our old Ewen. I will be happy if the tics can calm down again and if he is not fearful of and/or negative about the new day or of new things and activities coming up. That is all I want. He has always been remarkably confident and to see the opposite has been shocking. I know a part of shattered confidence is often a part of growing up. But the change was so abrupt and so intense...I just want him healthy and cured.
I am taking some Prozac now too. I'm on 2ML's right now and it is making me get sores on my tongue which is really annoying. But that is the only side effect. I figure if Ewen could wait out hives to go away, (which they did), I can wait out some sores on my tongue to go away. I read an article that said that parents with a child who is affected by PANS often show signs of PTSD. I can see why. But I do think it is possible that we are crawling out of the hole together now. We will see.
UPDATE: It is 10:15 pm. He went to sleep better tonight and he didn't complain about being too hot for the first time in a long time. I wonder if this is the first night he hasn't had a low grade fever in a while. He still huffed and still squeezed his feet and swished saliva. But it was calmer and shorter than usual. He fell asleep at 9:30 which is amazing since he had a soccer game tonight. He shot the ball at the goal from half the field out and made it to the back of the net but that little goalie still smacked it with his fingertips and knocked it away from the goal so that it bounced on the line. It was questionable but it could have been called a goal. Ewen enjoy the game tonight for the first time in ages. He was smiling and he wants to go to his Saturday game while Mike and I shoot a wedding. Which means that we have to let him go with friends which we haven't done since this all started. This would be the first time he would go 2 hours away for a game without us. I'm still not sure about it but he said today that he WANTS to. This is new and we don't want to say no to it. We have some friends that we trust that he can go with and they will be good about making sure he takes his medicine at 4pm.
So I am happy he will get 10 hours of sleep tonight. I am still hopeful about the antibiotics. I am hopeful.
He was fine going to school and he read a Percy Jackson book about Greek Heroes out-loud to his carpool girl-friend and his older sister and me. It is a pretty good book. He read during the whole drive there and I was glad that it was a car full of nerds because his reading was appreciated. When we got there his friend bolted to the classroom like she always does, and he stretched on the back seat and grumped, mumbling and wondering why he always suddenly got so tired when he got to school. I reminded him that he always feels better as the day gets going. He had hardly any huffing this morning, but I think he tries extra hard not to when he is around his friends. But I am still hoping that the antibiotics will help the huffing and get rid of it.
We have CBT this afternoon then he has a soccer game at 6:30 tonight that we are all going to go to. It was a pretty good morning. We will see how the rest of the day goes :)
Today I was thinking about why I didn't go with his pediatrician's suggested PANDAS diagnosis at first. I suppose it was because he had never had strep before and I didn't know much about PANS so it didn't seem right to put him on antibiotics for a long time if he had never had strep. Also, I was very concerned about getting him comfortable and he was seeing a specialist, which was the psychiatrist and I was trusting him to know what to do best as he is supposed to be one of the very best, if not THE best child psychiatrist at the University. So I was doing what he told me to do and when I mentioned PANDAS or PANS he said, "Has Ewen been sick before this happened?"
me: "No"
him: "Then it's not PANDAS or PANS."
That was the end of that conversation. I didn't remember that Ewen had the flu then pneumonia 5 months before that, and I didn't know it could be that long ago and still be PANS. I didn't realize that he hadn't been sick since then because his immune system was in overdrive. I didn't realize that the low grade fever he had randomly even though he wasn't sick, was because his immune system was in overdrive. I didn't put it together that his grumpy and weirdly-negative behavior change over the summer was likely due to the PANS. I didn't realize that there can be flare-ups induced by stress (like his teacher being a bit much or his getting overwhelmed with school work which is also a part of PANS). I didn't realize that the sudden, bizarre onset of panic attacks, his fear of water, and of choking on his food, were the most major symptoms of PANS. So now that we know, I wonder if almost a year after he has the flu and pneumonia, that the antibiotics will still help or if the damage is done beyond repair? I can't think that negatively and the nurse at his pediatrician's office was so positive. She pointed out the high numbers on the printout of his blood work and said "We have seen amazing results with treatment when we see high numbers like these."
That was very uplifting to me. I have hope again. Mike said that he has found that if he doesn't let himself get too high about something, then he doesn't get as low. So I am trying not to get too high about the possibly help of the antibiotics restoring our old Ewen. I will be happy if the tics can calm down again and if he is not fearful of and/or negative about the new day or of new things and activities coming up. That is all I want. He has always been remarkably confident and to see the opposite has been shocking. I know a part of shattered confidence is often a part of growing up. But the change was so abrupt and so intense...I just want him healthy and cured.
I am taking some Prozac now too. I'm on 2ML's right now and it is making me get sores on my tongue which is really annoying. But that is the only side effect. I figure if Ewen could wait out hives to go away, (which they did), I can wait out some sores on my tongue to go away. I read an article that said that parents with a child who is affected by PANS often show signs of PTSD. I can see why. But I do think it is possible that we are crawling out of the hole together now. We will see.
UPDATE: It is 10:15 pm. He went to sleep better tonight and he didn't complain about being too hot for the first time in a long time. I wonder if this is the first night he hasn't had a low grade fever in a while. He still huffed and still squeezed his feet and swished saliva. But it was calmer and shorter than usual. He fell asleep at 9:30 which is amazing since he had a soccer game tonight. He shot the ball at the goal from half the field out and made it to the back of the net but that little goalie still smacked it with his fingertips and knocked it away from the goal so that it bounced on the line. It was questionable but it could have been called a goal. Ewen enjoy the game tonight for the first time in ages. He was smiling and he wants to go to his Saturday game while Mike and I shoot a wedding. Which means that we have to let him go with friends which we haven't done since this all started. This would be the first time he would go 2 hours away for a game without us. I'm still not sure about it but he said today that he WANTS to. This is new and we don't want to say no to it. We have some friends that we trust that he can go with and they will be good about making sure he takes his medicine at 4pm.
So I am happy he will get 10 hours of sleep tonight. I am still hopeful about the antibiotics. I am hopeful.
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