(4pm 4ml prozac, 9:30pm probiotics, 1/4 of a 3mg melatonin) Didn't take zithromax today because didn't have it and didn't want to give it late at night incase it hurt his stomach to do that.
Mike showed me this article he found and I wish I would have read it in the beginning when all of this started: https://iocdf.org.pandas/
It validates everything and I can't believe it is taking the medical community so long to catch on. The neurologist we went to see was skeptical and one of those doctors that isn't interested in something new...just wants to go by the book and explain it with answers already in his playbook, even if they only cover up the problem instead of going to the root of it. I wasn't impressed.
The innovators are the doctors who read and learn and discover the most up to date issues and treatments. I can't believe a top neurologist was so unversed about PANS. He kept calling it PANDAS too and I had to correct him numerous times that it wasn't strep, it was mycoplasma.
The more I read about PANS and PANDAS, the more annoyed I am that we didn't received better help. Why don't all the pediatricians and Pediatric After Hours and the ER know about it so they when parents are bringing in their kids having new panic attacks they can explore this option rather than basically telling you to go to a psychiatric hospital...or home. I will never forget brining home a sleeping Ewen from the ER after a long evening of back to back panic attacks and after Ewen saying he wanted to die, and feeling like were bringing a kid home with two broken legs and the hospital told us to bandage him up as best we could and good luck, goodbye.
If they had done blood work, found the high levels of mycoplasma and started him on zithromax that night and possibly a steroid or at least Advil to get him through the worst of the attack...what a difference this whole nightmare would have been. Maybe I should write them a letter. They need to know that a 10 year old saying he was suicidal and panicking out of the blue when he was very recently the opposite of this...they should know that this is an acute emergency and not something to send home.
So on another note, Ewen had a great time at his sleepover last night. I went to pick him up in the morning (they only live 10 minutes away), and he begged to stay for longer. So I let him stay and then our whole family went over there too a couple of hours later and swam in their pool and had some lunch. Then Mike and I and the kids went to my parent's house for an evening barbecue and a swim in their pool. Ewen had a great day with his friends and playing Magic and swimming. He is able to enjoy it all now too. Before he couldn't have done this. But he can do it now and he is enjoying it too. He didn't huff much during the day but was huffing a bit tonight when falling asleep. I noticed that he does that mostly on the night before school after a weekend or long weekend. I even offered him a clonodine tonight and he said no.
He told me tonight that he doesn't regret what happened. He said he has learned from it, it has changed him. He said that watching all those youtube videos helped him discover he has a love of techno music which is big deal to him these days. I told him it changed me too and he wanted to know how. I said I realized I could be super mom, but then I said, well I discovered that when they were little and had all their issues so...I don't know.
That kid loves me so much. He has so much respect and righteousness for me. I think that one thing that all this did, is make him realize how fiercely I would fight for him and his happiness and health and wellbeing. He saw that I stayed by his side through all of this, even pulling him out of school and being there with him. It was really hard and I didn't get any work done but it was the right thing to do. If I was working somewhere else I would have had to quit my job to help him. You can't send a kid going through that, to school.
Anyway. I told him tonight as he was falling asleep that this stuff happens to people when they are older and now we know what to do and he has amazing tools from CBT to deal with it too. He agreed.
My instincts to protect him went sky high when this happened and I feel like they are still on high alert. There is nothing I wouldn't do for that kid or any of my 3 children. I feel so much gratitude that he is feeling better right now. I know that happiness isn't forever, but we have it now and I plan to hold on to it and enjoy it and share it. Also, I have a close relationship with hope these days and I hope a lot that things keep working out.
Mike showed me this article he found and I wish I would have read it in the beginning when all of this started: https://iocdf.org.pandas/
It validates everything and I can't believe it is taking the medical community so long to catch on. The neurologist we went to see was skeptical and one of those doctors that isn't interested in something new...just wants to go by the book and explain it with answers already in his playbook, even if they only cover up the problem instead of going to the root of it. I wasn't impressed.
The innovators are the doctors who read and learn and discover the most up to date issues and treatments. I can't believe a top neurologist was so unversed about PANS. He kept calling it PANDAS too and I had to correct him numerous times that it wasn't strep, it was mycoplasma.
The more I read about PANS and PANDAS, the more annoyed I am that we didn't received better help. Why don't all the pediatricians and Pediatric After Hours and the ER know about it so they when parents are bringing in their kids having new panic attacks they can explore this option rather than basically telling you to go to a psychiatric hospital...or home. I will never forget brining home a sleeping Ewen from the ER after a long evening of back to back panic attacks and after Ewen saying he wanted to die, and feeling like were bringing a kid home with two broken legs and the hospital told us to bandage him up as best we could and good luck, goodbye.
If they had done blood work, found the high levels of mycoplasma and started him on zithromax that night and possibly a steroid or at least Advil to get him through the worst of the attack...what a difference this whole nightmare would have been. Maybe I should write them a letter. They need to know that a 10 year old saying he was suicidal and panicking out of the blue when he was very recently the opposite of this...they should know that this is an acute emergency and not something to send home.
So on another note, Ewen had a great time at his sleepover last night. I went to pick him up in the morning (they only live 10 minutes away), and he begged to stay for longer. So I let him stay and then our whole family went over there too a couple of hours later and swam in their pool and had some lunch. Then Mike and I and the kids went to my parent's house for an evening barbecue and a swim in their pool. Ewen had a great day with his friends and playing Magic and swimming. He is able to enjoy it all now too. Before he couldn't have done this. But he can do it now and he is enjoying it too. He didn't huff much during the day but was huffing a bit tonight when falling asleep. I noticed that he does that mostly on the night before school after a weekend or long weekend. I even offered him a clonodine tonight and he said no.
He told me tonight that he doesn't regret what happened. He said he has learned from it, it has changed him. He said that watching all those youtube videos helped him discover he has a love of techno music which is big deal to him these days. I told him it changed me too and he wanted to know how. I said I realized I could be super mom, but then I said, well I discovered that when they were little and had all their issues so...I don't know.
That kid loves me so much. He has so much respect and righteousness for me. I think that one thing that all this did, is make him realize how fiercely I would fight for him and his happiness and health and wellbeing. He saw that I stayed by his side through all of this, even pulling him out of school and being there with him. It was really hard and I didn't get any work done but it was the right thing to do. If I was working somewhere else I would have had to quit my job to help him. You can't send a kid going through that, to school.
Anyway. I told him tonight as he was falling asleep that this stuff happens to people when they are older and now we know what to do and he has amazing tools from CBT to deal with it too. He agreed.
My instincts to protect him went sky high when this happened and I feel like they are still on high alert. There is nothing I wouldn't do for that kid or any of my 3 children. I feel so much gratitude that he is feeling better right now. I know that happiness isn't forever, but we have it now and I plan to hold on to it and enjoy it and share it. Also, I have a close relationship with hope these days and I hope a lot that things keep working out.
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