We joined an online doctors group out of Colorado that specialized in PANS/PANDAS. My youngest is doing great with their protocol and she is the reason we joined.
My 18-year-old with autism joined and after we got rid of her gut parasites she got very anxious. Then they gave her prednisone and she lost her mind.
Now almost 3 weeks post-prednisone we are still sludging through a frightening mess of anxiety, depression and OCD the wasn't there before.
I have it too now since it has been so awful with my oldest. I have to take anxiety meds to cope and I can't sleep at night after the hydroxyzine wears off. I'm in worse shape than she is, but mine is situational where hers is medical.
To keep her comfortable I give her
8am 50 mg hydroxyzine and 500 mg phenibut
1pm 25 mg hydroxyzine and 250 mg phenibut
6pm 25 mg hydroxyzine and 250 mg phenibut
I intersperse valerian calm drops and cortisol manager supplements between the doses.
And then I pray it holds until bed time since that is the max of both medicines that is safe to give.
Her dr group is going to be mad at me because I stopped giving her the NAC since it seemed to cause her anxiety. I also haven't given her the minocyclene because it seems to trigger depression. They are going to be mad about that too. I hope they don't get rid of us.
My son is doing fine on his Zithromax but after testing they found he has a parasite too and I'm scared he will get anxiety after getting rid of his parasites. I can't take 2 kids with full blow PANDAS since I am such a mess with just one.
Even my fucking cat is sick and needs medicine. All I do is figure out and administer medicine all day long. I could be grateful that we have options and medicine to help rather than ungrateful because it is stressful.
This is my job now, and to clean the house...but when I'm in fight or flight it is hard to clean the kitchen, when all I want to do is distract my brain.
My husband is very helpful. I feel like he is dragging me up the mountain when I feel like I can't walk anymore, like Mt. Dana in Yosemite.
So that is where we are. I am short on hope, although I know we will come out of it. I just need to get us both through without getting dependent or addicted to phenibut. And that is hard since it is so helpful.
I emailed her psychiatrist at the local university for advice but it says in her chart that they haven't read it yet.
I need to get up and start cleaning the kitchen and getting the kids morning meds together. I'm afraid of the day rather than excited about it. The kids will only want to sit inside and look at video games and I will be too exhausted to drag them out into the sunshine. That will be my day.
Maybe I'll go and sit on my mom's back porch. Even though she and my dad are both vaccinated, we are still not allowed inside of their house because of that small percent chance they still get it even with the vaccine. I find that utterly depressing too. But I will do whatever makes them comfortable and it is gorgeous outside anyway so we can sit on the porch. I yearn for a day where everyone is feeling well and enjoying each other.
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