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Sick Again

It's happening again. It started a few weeks back and we increased the frequency of the dosage.  Then he got food poisoning 2 weeks ago and went to the ER vomiting blood. He was treated and out the next morning and bounced back quickly and it seemed to even help his PANS.

But then it seemed to come back worse and 3 days ago he asked for his clonidine again. He's had it every night and tonight he wanted to take it earlier than our usual medication time, because he wanted something for his anxiety. He told me that trash was bothering him too and told him that his night light might short out and cause a fire.

He was so brave when he was vomiting. You wouldn't believe it. But his mental anguish from PANS is worse to him than vomiting blood. I don't think that doctors realize that. Here is this joyful amazing  and brilliant child and he gets tormented by his own brilliant amazing brain.

I wish I could just take it form him and bare it myself. I would do anything to ease his suffering. My heart is broken and I'm starting to hate Christmas. He keeps saying he can't wait till Christmas and he said that last year with the same fear in his voice and sad hope that he would suddenly get better on Christmas day. He didn't.

This year we have more help. He is seeing Kelly on Friday and Dr. W on Thursday. I might try and get him an appt at Dr. W. tomorrow. Mike thinks that we should just wait for Ewen's thursday appt instead of trying to fit him in tomorrow...so we can have more time with Dr. W. I think we need help NOW. I can't bare that he is sick again. He couldn't do his history report today because trash was and anxiety was hounding him too much. He took another clonidine before bed,  just tiny amounts both time. He was twitchy and dealing with saliva.

I have to remember that he got better from tis before and he can get better again. It is so terrifying. I have 7 weddings to edit and I can't imagine working.

I'm so scared...terrified. I just want my boy to not be in pain...no I want much more than that. I want him to be happy and comfortable and thriving and healthy and ok.

Life is such a fucking joke. Why do we hide in our comfort and hope that tragedy won't strike us? I just want him to be left alone and not played with. Let him be. Let my boy be.

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