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So, coming out of the blue to say that Kevin (my nearly 8 yo son) is having a medical procedure Fri/Sat in an attempt to greatly help relieve his PANDAS.

Quick background notes:

"PANDAS is a pediatric autoimmune disorder characterized by the dramatic onset of neuropsychiatric symptoms such as obsessions, compulsions, motor or vocal tics. PANDAS is thought to be similar to Sydenham Chorea where there is dramatic symptom exacerbation following a strep infection (Kevin was diagnosed nearly 4 years ago and reacts to ANYTHING that upsets his immune system)

PANDAS is thought to be caused by the following sequence of events in this order:

  • The production by the immune system of an antibody that can interact with neuronal tissue
  • A failure of the immune system to suppress this antibody
  • A breach of the blood brain barrier such that the antibody reaches neuronal tissue
IVIG stands for Intravenous Immunoglobulin. Immunoglobulin antibodies, type G, are extracted from donated blood. These antibodies are transferred to the recipient through an intravenous line. IVIG is used in many auto-immune diseases but the exact nature of how it works is not known. IVIG is highly anti-inflammatory and may help T-regulatory cells become re-activated to help remove anti-host antibodies. In addition, some of the infused antibodies may help recognize infected cells or bacteria that was missed by the recipient's own antibodies.

Most of the studies and certainly parents on this forum report that IVIG and PEX are helpful in putting PANDAS in remission, but don't "cure" PANDAS. There are many reports of PANDAS symptoms returning after re-exposure to GABHS. This is why many parents use long term prophylactic antibiotics. It is also important to mention that some parents report that antibiotics used aggressively at initial onset of symptoms seem to put PANDAS in remission."

Kevin has been on prophylactic and acute care doses of antibiotics since he was diagnosed. They are helping less and less. Plus with him, he reacts to anything that upsets his immune system not just strep (GABHS). He just got a horrid virus back in July and has been in a bad bad flare since (urine/wetting obsession, grabbing his crotch and sniffing his fingers to check, seeing/smelling pee everywhere).

I will be with him both days. The IV itself isn't going to be that big of a deal, actually. I've had plenty of them and heplocks with all 3 kids, so I've been able to describe them in detail to him. I got a child's education kit with real IV bags and lines and stuff from the company that prepares the immunoglobulin, so today we went through all the steps and practiced. It will be at an out patient surgical center, so they will put a hep lock on the line and send him home overnight. He's looking forward to watching movies (they have portable dvd players...I'm going to introduce him to The Goonies!), playing UNO, reading books to himself and me reading to him (we're in the Lemony Snickett series now, playing games on his educational gaming system, writing Thank You cards for his and G's bday party (well, maybe not looking forward to that!), and listening to his iPod. I, on the other hand, have spent nearly two weeks with him nonstop at this point, and the idea of being in a little cubicle with him for 6 hours on 2 days in a row, entertaining him and dealing with his OCD, is making me twitchy. I will have my laptop, a book, and they said I can escape to Starbucks across the street (for a tea, i hate coffee) for an hour so and they will watch him.

I'm not worried about the procedure itself. I am getting very nervous about the weeks after the IVIG. A large percentage of kids, as the faulty antibodies die off and exit the system, experience what is called "a turning back of the pages." Or as the doctor calls it "a suicide period for the parents" where the kid goes and had a resurgence of all their old tics and obsessions and symptoms in a hardcore way. But then again, some people don't, some people have it at a lesser level. I will be taking him to the chiro a lot in the weeks after it, doing bentonite clay and activated charcoal and epsom salt baths, and lots of vitamins and flax oil and sleep and good nutrition to try to support his system during this reset.

I'm also terrified about him getting exposed to anything during the crucial weeks after it. School starts on Aug 28 for him. *cringe* I do have an excellent relationship with the school nurse and his 2nd grade teacher was handpicked for him and has had another PANDAS student, so I know that should be good, but I keep thinking about germs germs germs. *twitch* If he gets very sick, it could negate the whole thing.

I'm also dreading fighting the insurance company. They might pay 80% or they might pay nothing. And then we are out a HUGE chunk of money. Which I would pay in a heartbeat to make my son better, but still. We all know the fun phone calls and letters that await me.

And what if is one of the 5% in his age/duration of illness/symptom group who at 3 months does not have significant improvement and needs another round? My sister's condo still hasn't fucking sold, so we are still paying for that.

Anyway, please think thoughts of strength for me and thoughts of healing for him.


( 11 comments — Leave a comment )
Aug. 6th, 2010 02:39 am (UTC)
****big hugs*****

My thoughts and prayers are with you all.
(Deleted comment)
Aug. 6th, 2010 04:29 am (UTC)
Hugs, good thoughts, healing and well wishes for all of you.
Aug. 6th, 2010 07:10 am (UTC)
This sounds so hard. I am thinking of you both. I really hope the procedure goes well and that it helps.
Aug. 6th, 2010 05:09 pm (UTC)
i was recently introduced to monolaurin, which helps the immune system fight a wide variety of things including gram positive bacteria, candida and a variety of virii.

that being said, i have zero idea how it would interact with K's situation, and american doctor's don't appear to know much about it (even if it was recommended to me by my doctor).
Aug. 6th, 2010 06:15 pm (UTC)
I would agree with what you're saying about not being certain about interaction, but I do find the following intriguing:

"Gram positive bacteria are those that contain a thick mesh cell wall lattice made of sugars and amino acids. Disrupting this mesh-like outer cell wall is the key to stopping them from spreading. The troubling bacteria in this category are in the families of Streptococcus, Staphylococcus, Corynebacterium, Listeria, Bacillus, and Clostridium."

Note that Strep is in that list....
Aug. 6th, 2010 06:25 pm (UTC)
yes, yes it is.

and while it has not been shown to be active against rhinovirus, it has been shown effective on the flu virus.

and the fact that it shows up naturally in breast milk does seem to imply that it's damned safe, altho i have seen warnings about too high doses causing abrupt die-off symptoms
Aug. 8th, 2010 03:34 pm (UTC)
It will be fine. We had ours last year - Sept 10 and 11th with Dr K. It's very soothing- my daughter went in totally out of control and laid there like a sleepy, calm kitten the whole time. It's like you can just feel the healing energy there when you step in.

-It's pretty chilly in there, so take a favorite blanket and sweaters.
-They make you wear booties and bonnets over your hair, so prepare him that everyone will look a little funny.
-They don't have dye-free tylenol or benadryl, so bring your own instead, and dose him with benadryl before you get there.
-The nurses are super sweet. If you need ANYTHING just ask. They have menus for food delivery too and will bring it right back to you.
-If he has any symptoms while getting the IVIG- too cold/shivery, headache, whatever... tell them and they will adjust the drip.

Hope this helps!

Aug. 14th, 2010 11:44 pm (UTC)
I just read this now...I hope that it all went very well.
Jan. 26th, 2011 08:19 am (UTC)
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Jan. 26th, 2011 04:55 pm (UTC)
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( 11 comments — Leave a comment )


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