(4.2 ml Prozac, 500mg Zithromax...phase 2 of daily treatment, morning probiotics and a melatonin at bedtime instead of a Clonodine)
So this morning Ewen said he was still depressed and didn't want to go to school. So I let him stay home. He has been through so much that if he needs a day to regroup he can have one. If I have learned anything through this, it is to trust how he feels and not worry needlessly that he is deceiving me. I have learned that he was tired and miserable about going to soccer because he was actually sick, not because he was being lazy, and that when he got better he was happy to exercise again and had fun doing it.
This morning he was pretty sullen so I let him play Agar.io on the computer and Skype with a kid his age from Africa who spoke English with a French accent. He very much enjoyed that and I could hear him laughing a lot. I called my mom and asked her to heat up the pool to try and get Ewen to go swimming. I didn't want him in front of the computer all day. So she did and we headed over there (she lives only 10 minutes away from our house). He was annoyingly reluctant but he finally went in and we played lacrosse in the pool. He actually started to have fun. I realized he was coming out of his funk and when I asked him a couple of hours later to swim again he said OK if I wanted him to and had fun again. He always does better when he is active and not just in front of the computer all day. Actually a balance is good. He seems to be able to self-regulate in front of the computer, then come out and have fun for a while knowing he can go back.
I called his pediatrician this morning but they said she was out of town for the week. So I talked to her awesome nurse and explained that Ewen seemed to be going down hill after a seemingly remarkable recovery. I said we were loosing him again to depression and anxiety. She spoke to the doctor who was there and she said that instead of going to the 1-a-week 500 mg dose of Zithromax, that we should do another month of 1 a day at 250mg, starting today and taking 2 today just like when we started the first time. So we picked up Ewen's prescription and gave him 2 pills equaling 500mg. I hope it knocks everything out.
His tics are so much better that I decided to try to give him melatonin instead of Colondine tonight. It worked just fine. He huffed twice in 45 minutes of resting then falling asleep and he barely had tics...although it was pretty dark in there and I was't able to see properly if he was tensing his muscles or not. But I much prefer giving him melatonin than Clonodine. He was taking such a small amount of Clonodine...less than a 1/4 of a pill, that I am sure it is OK to stop without weaning him off.
So after a bit of a set back I hope we are back on track...or at least not regressing anymore. Tomorrow Mike and Ewen will head out to stay at the hotel for his class trip at a theme park the first full day (Thursday) and a water park the second day (Friday). Then on Saturday and Sunday he has a soccer tournament nearby the theme park and then he and Mike will come home on Sunday. I am really nervous that he will be away for so long. Mike is great and will take really good care of him. But I am the family nurse and it will be hard to not be there to make sure that Ewen is doing OK. Especially since he has been so up and down.
One thing about his diagnosis is that it validates the seriousness of it all. Tomorrow before Ewen goes I am going to take him to see the neurologist that I took him to last year after he had the flu and all sorts of neurological problems from it. He is supposed to be one of the 5 best neurologists in the country but he said that Ewen was fine because he tested OK when he had a EEG and didn't have a seizure through it. But I remember I knew that something wasn't right with Ewen but I didn't want to push it because I didn't want him to be given a needless MRI just because I was worried. I decided to trust the doctor. But the truth was Ewen was still dealing with the infection and it was messing with him for months afterwards until it came to a head in December of last year (when the panic attacks started). The neurologist told me to watch his symptoms then come back when I had a list. Well now I have a list.
So tomorrow I will give him the list and see if he can offer anything helpful or not. If not, maybe he will learn something? Maybe he will learn that sometimes intuitive mothers know more than he gives them credit for.
What I'm hoping though is that we will have another excellent doctor on our PANS team.
Good night. Now I have to go and pack Ewen's medicine for Mike to take with them to the class trip.
So this morning Ewen said he was still depressed and didn't want to go to school. So I let him stay home. He has been through so much that if he needs a day to regroup he can have one. If I have learned anything through this, it is to trust how he feels and not worry needlessly that he is deceiving me. I have learned that he was tired and miserable about going to soccer because he was actually sick, not because he was being lazy, and that when he got better he was happy to exercise again and had fun doing it.
This morning he was pretty sullen so I let him play Agar.io on the computer and Skype with a kid his age from Africa who spoke English with a French accent. He very much enjoyed that and I could hear him laughing a lot. I called my mom and asked her to heat up the pool to try and get Ewen to go swimming. I didn't want him in front of the computer all day. So she did and we headed over there (she lives only 10 minutes away from our house). He was annoyingly reluctant but he finally went in and we played lacrosse in the pool. He actually started to have fun. I realized he was coming out of his funk and when I asked him a couple of hours later to swim again he said OK if I wanted him to and had fun again. He always does better when he is active and not just in front of the computer all day. Actually a balance is good. He seems to be able to self-regulate in front of the computer, then come out and have fun for a while knowing he can go back.
I called his pediatrician this morning but they said she was out of town for the week. So I talked to her awesome nurse and explained that Ewen seemed to be going down hill after a seemingly remarkable recovery. I said we were loosing him again to depression and anxiety. She spoke to the doctor who was there and she said that instead of going to the 1-a-week 500 mg dose of Zithromax, that we should do another month of 1 a day at 250mg, starting today and taking 2 today just like when we started the first time. So we picked up Ewen's prescription and gave him 2 pills equaling 500mg. I hope it knocks everything out.
His tics are so much better that I decided to try to give him melatonin instead of Colondine tonight. It worked just fine. He huffed twice in 45 minutes of resting then falling asleep and he barely had tics...although it was pretty dark in there and I was't able to see properly if he was tensing his muscles or not. But I much prefer giving him melatonin than Clonodine. He was taking such a small amount of Clonodine...less than a 1/4 of a pill, that I am sure it is OK to stop without weaning him off.
So after a bit of a set back I hope we are back on track...or at least not regressing anymore. Tomorrow Mike and Ewen will head out to stay at the hotel for his class trip at a theme park the first full day (Thursday) and a water park the second day (Friday). Then on Saturday and Sunday he has a soccer tournament nearby the theme park and then he and Mike will come home on Sunday. I am really nervous that he will be away for so long. Mike is great and will take really good care of him. But I am the family nurse and it will be hard to not be there to make sure that Ewen is doing OK. Especially since he has been so up and down.
One thing about his diagnosis is that it validates the seriousness of it all. Tomorrow before Ewen goes I am going to take him to see the neurologist that I took him to last year after he had the flu and all sorts of neurological problems from it. He is supposed to be one of the 5 best neurologists in the country but he said that Ewen was fine because he tested OK when he had a EEG and didn't have a seizure through it. But I remember I knew that something wasn't right with Ewen but I didn't want to push it because I didn't want him to be given a needless MRI just because I was worried. I decided to trust the doctor. But the truth was Ewen was still dealing with the infection and it was messing with him for months afterwards until it came to a head in December of last year (when the panic attacks started). The neurologist told me to watch his symptoms then come back when I had a list. Well now I have a list.
So tomorrow I will give him the list and see if he can offer anything helpful or not. If not, maybe he will learn something? Maybe he will learn that sometimes intuitive mothers know more than he gives them credit for.
What I'm hoping though is that we will have another excellent doctor on our PANS team.
Good night. Now I have to go and pack Ewen's medicine for Mike to take with them to the class trip.
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