FallingApart

IVIG did help her, but it was never sustainable. The reason was because our other daughter is a silent strep carrier and it took us years to figure it out. That was the reason that PEX failed so miserably for us. That is why anytime anyone mentions PEX here I try and chime in to make sure they aren't bringing their child home to a house with a strep carrier.
 
Our insurance company is who required us to see an ND. I had never been to one before and she was able to have the same effects for our daughter as IVIG. But again, they didn't last. Given that no one was able to get us lasting results I decided to learn homeopathy myself (I wanted to become and ND, but that is a 5 year full time program...) so that I could help my daughter. We are now treating the carrier child solely with homeopathy and I fully believe it will do what antibiotics could not do. This is just our family. I truly believe that whatever works in this frightening and maddening situation is what should be done for your child. Our ped claims that most of her PANDAS families are 1-2 rounds of abx and they are cured. If that option was available to me and produced results, that is what I would do.
 
Remission is really hard for me to answer. I think that she has been hurt emotionally through all of this and so she still exhibits rages. But her body really and truly is healthy. I think that at this point the rages are a part of her and a learned response. My husband and I need to help her with this. When that is acheived I will feel like I can use the word remission. But from a physically healthy standpoint, she is healthy. And that has never, ever happened on this journey.
 
Hope that helps some.

I am with you on the PTSD front. No MD (at least one that can help with it) will take me seriously. Sleep is a disaster for me. I can take 2000 mg of magnesium and it does nothing. I am a certified yoga and meditation instructor and I am wide awake. Melatonin only sometimes works for me. The lack of sleep and the inability to sleep make me very angry and I decided to do whatever it took to sleep. I go through periods where I take an RX sleeping pill to fall asleep and an RX pill to stay asleep in the same night and for several weeks in a row. The reduction in stress is worth it for me. Many of us are in this for the long haul so we need to take car e of ourselves.
 
I hope you find something that works for you and that you don't beat yourself up about it, but rather sleep peacefully.

Have any of you ever tried Clonidine for yourself or your child? Clonidine is a BP medication. My doctor wanted me to try it bc I am such a basket case and am beyond anxious. Her theory was that if your BP is automatically lowered, then your anxiety will follow. I've been taking it on an as needed basis for a few months. I think that I (Like all of you prob) am SO stressed out, that this will never touch my anxiety. But what it does do, is at it's highest dose, is knock me right out for sleep. And I never sleep anymore, so I love this drug. And I now have high BP from all this stress anyway.
 
Onto the children. I told our ped the GPs thinking on Clonidine and anxiety and said I wanted to try it on my PANDAS daughter and she prescribed the lowest dose for her. I saw no improvement and stopped using it. Last night I told DD she had to sleep in this morning (yeah, right!!!) She asked me to giver melatonin, but it was way past an appropriate time for that. SO I pulled the Clonidine out and gave her a whole pill (the dosage is for 1/2 pill). Next DD comes out and can't sleep either. I gave her a half of the pill. My entire house, including DH is asleep right now. Exciting, yes!!!!! Coffee by myself. However, when will they wake up? 7 pm?
 
So, I looked up user reviews on Web MD and this drug is used for Autism and ADHD. I had no idea!!! And this drug calms down rages and helps the non sleepers sleep.
 
I only get on here now and then, so if this is old news, sorry. But when I have a house full of sleepers, I want you to have it too.
 
Love,
FA