Skip to main content

PANDAS Flare - My Oldest, Phenibut and Hydroxyzine

 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.






Comments

Post a Comment

Popular posts from this blog

The Chair of the Pediatric ER Wrote Back!!!!!

Ms. ....... Thank you very much for bringing your son’s case and experience to our attention. First of all, I hope that Owen is still doing much better. I absolutely understand how devastating this could be in terms of a missed opportunity to appropriately diagnose. I have to say that in reading your email and updating my knowledge about the condition, I could see how it may be quite difficult to make a diagnosis accurately in an Emergency Department setting and I could see why things occurred in the manner in which they did. That said, I am very sorry that we let you and your family and your son down in this way. Our Pediatric Emergency Department are staffed by a group of very expert pediatric emergency medicine specialists trained in some of our nation’s leading teaching institutions who I was able to recruit here to ...........  to take care of our community. I know that the fact that we were not able to expeditiously diagnose your son’s condition caused a great deal o...
2 comments
Read more

Spring Break 2017 Update

4ml Prozac, 500mg Zithromax 3x a week, 1.5 mg melatonin, less than a quarter of Clonidine Ewen is doing well. Right now he is vacuuming and mopping the whole house (all 850 square fee lol) To earn an hour of screen time playing Overwatch. We have had a few hiccups. He got in major trouble in school for hacking into the computer and writing silly things on a class web page. He said he didn't realize he would get a referral and get in so much trouble since he wasn't hurting anyone and would never bully. He also dropped his grades because he was too busy having fun with his friends. So Mike and I had a meeting with his teachers. He now has a 504 plan since he has had lots of absences.  We are paying close attention so that we can make sure he completes his assignments. Last month he was having trouble with tics (mostly huffing) and anxiety and so his pediatrician put his Zithromax up to 500 mg every day for a full week. That completely helped and was amazing to get him back...
4 comments
Read more

Titrating Prozac (Really Low and Slow)

Ewen is in his bedroom editing an Agario video. Since he is doing video editing I'm calling it a part of homeschool. I also have some work for him to do on the dining room table this afternoon. We have his first acupuncture appointment this afternoon. It is going to cost $90. I'm not sure if it will do anything to help since today was our 2nd day of Prozac and I am sure that meds interfere with natural and holistic treatment. But we will try. Maybe it will help? I'm giving Ewen barely any Prozac this week to start off with. It comes in a liquid and we are supposed to be giving him 1 ML...which apparently is very low. But yesterday I gave him .1 ML, to get his body used to it. And today I gave him a smidge under .2 ML's. There is no reason not to titrate it so low. He is so ultra sensitive that I want to give his body time to get to know the drug before we put it up enough to make a difference. He did so badly on the Lexapro that I think this is the right way t...
Post a Comment
Read more