(just under 4ml prozac, 1000mg b12)
Today there was no huffing and very minimal twitching. He seemed pretty much like the old Ewen today. He can relax and chat, smiles and laughs all the time and he connects with his friends and loves to play Magic The Gathering with them. He didn't need constant screens today either. I never game him his Zithromax this past Tuesday so I am wondering if he is going to be OK without it. He seems to not feel well for the first two days after he takes the 500mg pill, then gets better by the 3rd. But maybe he doesn't need to take it anymore? I need to call his pediatrician and talk to her about it instead of just taking it all into my own hands. But so much of this is observation that it seems ok to make decisions for him. We don't want him to be on such strong antibiotics forever...but we don't want his progress to wane either. I think I will give him the next 500 mg pill on Sunday...after the tournament and then see how he is on Monday.
He has a 3v3 tournament on Saturday and I am worried about him playing in the terrible heat. It has been up to 100 degrees outside and I can't imagine playing a tourney where he will be running like a maniac in such heat. Mike is going to take him and then he plans to leave Ewen before the last game so he can come and see our oldest (Ada) perform with her music camp in the evening. But I don't want him to leave Ewen alone, 2 hours from where we live, to play his 3rd game in the insane heat. No one can take care of Ewen like we can and I don't want him left with other parents when the heat is so extreme and he is still recovering from this horrible PANS. Mike is quick to think that all is well. I am very cautious and like to make sure first. I think it is enough that he is going to play the tournament in this heat and too much that Mike plans to leave him for the last game. So I will talk to him about it but I don't think he will listen on this one.
After Ewen had flu and pneumonia last year and was taking antibiotics, Mike had him do a 2 day soccer tournament in the blazing heat. I was very, very much against it and Mike was weirdly adamant about it in a way that was very unusual for him so I finally said OK. Now I think about how that was the infection that Ewen's PANS stemmed from and I wonder if Ewen's working so hard at the tournament before his body had fully recovered, was too hard on his immune system, and I should have fought harder with my "no" on that one. I also realize that there is a balance of not worrying all the time and having fun and playing soccer. I still wish though that Ewen has not played that tourney and I suppose I feel irritated that Mike insisted back then. Maybe this whole PANS thing was because Mike insisted Ewen play that soccer tourney before his body was recovered. So this weekend he mustn't leave Ewen with another family. I'm going to make sure and have a big fit about it if I need to. We generally don't tell each other what to do or criticize each other. But sometimes when we feel strongly about something we make that clear and the other person usually acquiesces. But he didn't with that tourney last year. I probably need to talk to him about how I feel about that whole thing instead of harboring resentment. But I don't want to lay blame on him either. He already feels so heavy and sad about what Ewen has gone through that I don't want to add another intense layer to it.
So I will try not to blame him. It is hard being a parent and we can't always make the right choices and decisions. He loves Ewen with all his heart and would never knowingly put him in danger or purposely risk inflicting illness. I know that, so it helps not be angry and it helps to melt the blame. But I will fight harder for what I believe in next time. Gosh I hope Saturday's 3v3 tourney isn't a terrible idea.
Today there was no huffing and very minimal twitching. He seemed pretty much like the old Ewen today. He can relax and chat, smiles and laughs all the time and he connects with his friends and loves to play Magic The Gathering with them. He didn't need constant screens today either. I never game him his Zithromax this past Tuesday so I am wondering if he is going to be OK without it. He seems to not feel well for the first two days after he takes the 500mg pill, then gets better by the 3rd. But maybe he doesn't need to take it anymore? I need to call his pediatrician and talk to her about it instead of just taking it all into my own hands. But so much of this is observation that it seems ok to make decisions for him. We don't want him to be on such strong antibiotics forever...but we don't want his progress to wane either. I think I will give him the next 500 mg pill on Sunday...after the tournament and then see how he is on Monday.
He has a 3v3 tournament on Saturday and I am worried about him playing in the terrible heat. It has been up to 100 degrees outside and I can't imagine playing a tourney where he will be running like a maniac in such heat. Mike is going to take him and then he plans to leave Ewen before the last game so he can come and see our oldest (Ada) perform with her music camp in the evening. But I don't want him to leave Ewen alone, 2 hours from where we live, to play his 3rd game in the insane heat. No one can take care of Ewen like we can and I don't want him left with other parents when the heat is so extreme and he is still recovering from this horrible PANS. Mike is quick to think that all is well. I am very cautious and like to make sure first. I think it is enough that he is going to play the tournament in this heat and too much that Mike plans to leave him for the last game. So I will talk to him about it but I don't think he will listen on this one.
After Ewen had flu and pneumonia last year and was taking antibiotics, Mike had him do a 2 day soccer tournament in the blazing heat. I was very, very much against it and Mike was weirdly adamant about it in a way that was very unusual for him so I finally said OK. Now I think about how that was the infection that Ewen's PANS stemmed from and I wonder if Ewen's working so hard at the tournament before his body had fully recovered, was too hard on his immune system, and I should have fought harder with my "no" on that one. I also realize that there is a balance of not worrying all the time and having fun and playing soccer. I still wish though that Ewen has not played that tourney and I suppose I feel irritated that Mike insisted back then. Maybe this whole PANS thing was because Mike insisted Ewen play that soccer tourney before his body was recovered. So this weekend he mustn't leave Ewen with another family. I'm going to make sure and have a big fit about it if I need to. We generally don't tell each other what to do or criticize each other. But sometimes when we feel strongly about something we make that clear and the other person usually acquiesces. But he didn't with that tourney last year. I probably need to talk to him about how I feel about that whole thing instead of harboring resentment. But I don't want to lay blame on him either. He already feels so heavy and sad about what Ewen has gone through that I don't want to add another intense layer to it.
So I will try not to blame him. It is hard being a parent and we can't always make the right choices and decisions. He loves Ewen with all his heart and would never knowingly put him in danger or purposely risk inflicting illness. I know that, so it helps not be angry and it helps to melt the blame. But I will fight harder for what I believe in next time. Gosh I hope Saturday's 3v3 tourney isn't a terrible idea.
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