Charlotte Mom

What company are you using? Who is your insurance? I was going to go this route with Gamunex Direct and they were extraordinarily helpful. We ended up going to Chicago to have Dr K administer - and I am so glad we did, because it was so great to have him hold our hand through this. If you think going with Gamunex Direct could help you, I can give you the name of the person I was dealing with. All they need is the doctor's script and they can set up the rest - including getting approval from insurance and getting an experienced nurse who is used to dealing with children.

I am surprised Dr. K. is not keeping your son on long term abs. Many/most kids on this forum are on long term abs (some can manage lower dose prophylaxis, but others require full-strength abs). I don't know if you had a chance to see Buster's FAQ...that is a helpful thread. http://www.latitudes.org/forums/index.php?showtopic=6266 My dd has been on Azith 250mg/day (she's 54 pounds, now 9.5 years--so that's about full-strength) since June 08. She also had IVIG in Aug. 09. She may be one of the more severe PANDAS cases (at her worst at age 7.5 years she had PANDAS anorexia nervosa with debilitating OCD which landed her in the hospital for 6 days b/c of acute food refusal/malnutrition)...when we tested her CaM kinase ll in July 09 (after a H1N1 exacerbation) her level were the highest Dr. Cunningham has ever seen (above even the SC kids). She's doing much much better now...we are cautiously optimistic but wouldn't consider her "cured". My daughter just had IVIG 12 days ago. she is 10 (will be 11 in a week) she was diagnosed OCD when she was 6, but upon a thorough medical history evaluation by Dr K it was determined that her PANDAS onset was age 3 after sore throat that turned into severe pneumonia. There was a dramatic change in her behavior that we/her doctor attributed to “terrible threes.” For years she just continued to get sick (with her compromised immune system) she had two more pneumonias; sever, prolonged fever and rash – which now we believe was scarlet fever; constant ear infections, which led to getting tubes in ears; and constant bladder infections from age 3 to today – age 10. Can you imagine... all those years of thinking it was a behavioral issue... and not knowing what to do because nothing helped her with her meltdowns and clothes sensitivities among other things… it’s unbearable to think back on all she has been through. I am terrified that because so much time has passed since her onset, that the treatment will not work. She has had seven years of the antibodies attacking her brain, three years of every kind of psychiatric medication you can imagine, and two hospitalizations... before we finally found this forum pointing us to the recourses that could actually finally explain to us what we were dealing with and why nothing, nothing - not ERP, not drugs - would help her. Anyway, what I wanted to ask you EAMom is… what did the months from Aug 09 IVIG to now look like? What does much better look like? When did you start to notice improvements? Is your daughter able to go to school? Also, how many years passed between her onset and her IVIG? Did you have the same concerns I have about how much time had passed between onset and treatment? It seems the success stories I see are more likely to be only a year (maybe two) between onset and treatment. I would also consider my daughter severe - although we did not get a Cam Kinase. She gets in fits of rage, yells, and gets destructive... picking off the keys of her computer keyboard, ripping up books, screaming at everyone, demanding that we not move or talk while she finishes touching the places we have touched or pointed to. She is so sick of having to touch that she demands that we carry her up and down the stairs – because it takes her forever to get up and down with all the touching she has to do. She has trouble controlling her bladder when she is upset. Did you experience such scary behavior? Did any of you experience such scary, violent/destructive/demanding behavior? How do you manage through this? How do you protect your other children from this? We have two younger children who are just so sick of this. They are beginning to act out in frustration and anger. This all got this bad this year around March (after her psychiatrist increased and added new medications – including LUVOX… it looked like serotonin syndrome set this off). Prior to that, we were mostly just dealing with very odd behaviors... sniffing, erasing, depression/embarrassment - odd social behaviors, having to go in and out the same way, occasional meltdown - but nothing aggressive. I long for those days now. I am just so concerned all this is now irreversible. Any encouragement from parents whose children have been through years between onset and help would be ever soooo greatly appreciated.

If you read "Saving Sammy," you might recall that Strattera, a newer non-stimulant ADHD drug, was added to Sammy's regimen toward the end of his PANDAS recovery. I just exchanged a couple of emails with Beth Maloney, and Sammy is still on a low dose of Straterra today, for what that information is worth. We tried Stratera on two separate occasions and it aggravated my daughter - this was pre-IVIG though - so maybe it works better after aggressive PANDAS treatment. We just go the IVIG done two weeks ago. Is concentration his only issue? Did the IVIG, supplements and Azithromycin help his OCD? What supplements did you try already for the concentration? Tenex seemed to help her the most. They just came out with a new time-released version of Tenex- it's called Intuniv. We just switched to this and so far so good. Now if we could only get the OCD and meltdowns to subside! I am disheartened to hear you had no luck with the IVIG and Azithromycin. Can I ask, what dose Azithromycin was he on? did you ever get up to the really high does like Sammy? We have her on a pretty low dose right now 250mg daily in the a.m. Did you consider the second IVIG - I have heard that some kids need two treatments and that the second treatment can occur 9 months after the first. Who is your doctor?

How did you get a vaginal strep diagnosis? My daughter has all these symptoms and I tried to talk to her doctor about it and he said she wouldn't really get strep in her vaginal area or that it wouldn't cause your body to produce strep antibodies or something like that. She has had numerous bladder infections as well, and he said we should check for strep in her bladder. But he dismissed the idea that vaginal strep could be an issue. Here's how it shows up in my girls. First they will start to wipe excessively saying that it feels like they pee'd a little again or didn't wipe well enough. We've come to know it as "the wettness". It is odorless and looks like water (no substance to it). It can be accompanied by redness, pain, burning and itching but the burning and itching is not bad and not consistent. If it goes on long enough, it is always red and painful and eventually will get a discharge that is yellow and very icky and the child is very irritated at this point. My dd was wearing pantiliners every day by the time we got diagnosed. Now I know exactly when it comes back because one day they will say it doesn't feel right down there and the next day the wetness will be back. I hope that helps. Susan

Here's how it shows up in my girls. First they will start to wipe excessively saying that it feels like they pee'd a little again or didn't wipe well enough. We've come to know it as "the wettness". It is odorless and looks like water (no substance to it). It can be accompanied by redness, pain, burning and itching but the burning and itching is not bad and not consistent. If it goes on long enough, it is always red and painful and eventually will get a discharge that is yellow and very icky and the child is very irritated at this point. My dd was wearing pantiliners every day by the time we got diagnosed. Now I know exactly when it comes back because one day they will say it doesn't feel right down there and the next day the wetness will be back. I hope that helps. Susan

Buster, what do you conclude? do you think momtocole1 ds has an immune deficiency that would be recognized by insurance? do you think the IVIG would help him?