bronxmom2

I'm sorry if I scared you... just don't say "blood sample." I don't think this happened to anyone else, so I doubt if it will happen to you. good luck

Buster, you mention "especially if an antibiotic isn't liquid." Is liquid zithromycin preferable to the 250mg tablets?

I am also just glad to hear that you're getting some relief!

I took my blood draw to the Fed Ex and the clerk asked what was in the box. I said, "a blood sample" and they refused to ship it. (In fact it was only plasma, but I didn't realize that) I had to go to a different Fed Ex store 10 blocks away, where no one asked me what was in the box.

Excitement is my son's primary trigger.

it's experimental for pandas but not pid

was he diagnosed with a primary immune deficiency?

I think it's a great idea. I am especially interested in how anti-lyso, anti-tub, and anti d1 and d2 compare with symptoms and the efficacy of treatments.

I am curious about that too... what if the "history" of their immune systems includes PANDAS?

Believe me, I got a LOT of slack for nursing him as long as I did, maybe my body knew somehow that something was amiss. I do remember the N-Acetyl Glucosamine discussion, and I am planning to buy some (I mentioned this in my post-PEX plan), because my understanding (per Buster's explanation) is that IVIG does something to regulate the T cells, but PEX does not. Though I don't know if this is a good time to experiment... I am still nursing my 18mo, now I am tempted to pump a little extra and sneak it in my PANDAS son's cereal bowl.

Thanks. This is from wikipedia entry on methionine: High levels of methionine can be found in sesame seeds, Brazil nuts, fish, meats and some other plant seeds. Most fruits and vegetables contain very little of it. Most legumes are also low in methionine. If it's like infant formula I wonder if there's a lot of it in breast milk. I breastfed my PANDAS son for 3.5 years, and now that I think of it, 3.5 is exactly when the PANDAS started.

I hear you, and I have worried about that, but my instincts tell me that he needs the antibiotics more than 2X weekly. I have tried to call in a request to up it, but this doctor is just so busy. I have an appointment with my regular ped. and I'm hoping he will prescribe a stronger antibiotic dose-- he's done so in the past. It just seems foolish and terrifying to risk everything by giving the lowest possible dose of antibiotics-- as you said, the key now is to prevent the body was cooking up the PANDAS-flavored antibodies again.

I read the abstract... but do you know any examples of dietary gangliosides?

Here is my plan for protecting my son post-PEX: -- give him daily Zith, 250 mg, and worry later about explaining how I've gone through a year's worth of prophylactics in 3.5 months. -- homeschool -- avoid the dentist -- avoid places like indoor playgrounds, indoor water parks, etc. One question I had about the PEX (and others have wondered too, I know)... if they remove all the antibodies from our kids' blood, aren't they then like newborn babies with no immunity to anything? Strangely, no one at Georgetown could answer that. I really feel that after consuming $40,000 worth of health care, I have a responsibility to try be careful now and make the most of this! Any other suggestions? Daily I am going to give him: Zith, probiotics, advil (to speed the deflammation), fish oil, vitamins. I was also fascinated by the idea of N-Acetyl glucosamine (NAG) that kim mentioned last week (it's supposed to do something to regulate the T cells) and GABA, which someone mentioned as a natural anti-anxiety (I bought some and took it myself and have given to him only when he seemed really agitated)... but I don't want to load him up with too much stuff.

I would take him out, but I am pretty anti-school anyway. My son is one of those who's done well in the summer, then fallen apart every fall since he was 3 and started preschool.

That is such great news! I think IV steroids should possibly be part of PEX protocol. I have also wondered why no one ever tries IV antibiotics. Anyway I am so glad to hear you guys are doing better!

Hi, we are the latest crew back from PEX at Georgetown. It went pretty smooth... in late Tuesday morning, out Thursday afternoon, we did the pherisis each day, tolerated it fine. As others have reported, pulling out the catheter at the end of it was by far the worst part. My son howled like his leg was being amputated but insisted on watching the whole thing. Horrible. The doctor told him beforehand that it wouldn't hurt, which really made it worse. Other than that I have nothing but glowing reports for the people at Georgetown. It was like being in a strange alternate universe where everyone believes in PANDAS and believes in aggressively seeking a physical cure. Everyone-- doctors, ward nurses, PEX nurses-- had a general grasp of PANDAS, was genuinely interested (to the point of seeking out research, etc.), and seemed proud that Georgetown was offering this treatment, deeply respectful of Dr. Latimer, and curious about the outcome of the PEX. The worst part was being in the ICU! It was so painful for me to see the sick kids... after a while I just couldn't bring myself to leave our room. I am hoping that as they do more of this, they'll be comfortable doing it in the regular peds ward. Anyway the people were super nice (everyone in Georgetown and DC seemed strangely nice to me, actually) and my so was happy because he was doted on. My only other hospital experience was giving birth in a NYC hospital, so I guess my expectations were low. Anyway I left feeling very grateful to everyone at Georgetown. At this point I am seeing only minor changes in his behavior. It's so hard not to hope for a magical transformation, or on the other hand freak out inwardly at every obsessional/defiant comment... I'm trying to take a step back a bit, and have some confidence in him, give him some time for his brain to heal, though at the same time I htink lots of our kids' behaviors have become learned/ingrained over the years, so I have a somewhat contradictory impulse to draw the line and refuse to accept the behaviors that my gut tells me he can control. I don't want to speak for mommd, but I suspect much of the rapid and sudden improvement she saw in her son was from the IV steroids. (My son did not get IV steroids because he had no allergic reaction to the plasma stuff.) I will say that he seems to look better somehow now. I mean his color and his eyes. For several years he just hasn't looked quite right to me.

Do it!

Yeah, next week... for PEX. I have some questions for you, but I don't want to overwhelm you. I think I'll send you a pm with my phone number.

Many people have discussed how stress and fear seem to trigger breaches in the BBB... which makes a lot of sense. Have you noticed other triggers? My son has always seemed bizarrely, physically, neurologically intolerant of excitement. I mean overexcitable in the EXTREME... he goes completely and utterly insane when excited. For many years I tried to understand this in terms of giftedness... the gifted world has this theory of OEs (overexcitabilities) (there are five-- psychomotor, sensual, emotional, intellectual, and imaginational) which has been fairly helpful in understanding what drives my son's behavior. Up to a point. http://giftedkids.about.com/od/gifted101/a/overexcite.htm I know that many of my friends/family have judged me for my instinct to remove him from situations that he obviously cannot handle-- the list of which now includes school-- but as I look at the situation now in terms of his overall health, I think I was right. I want my husband to better understand the role of the blood brain barrier in my son's behavioral and psychological problems. My husband yells, teases, and provokes him way too much, and thinks I coddle him. Also, I know this has been discussed before... but what can we do to shore up the BBB? I'm starting to think that is the key to preserving the effects of PEX/IVIG.

mom md, I am so sorry this is happening! (as you can imagine...) What dose steroids are they giving to try to nip this in the bud?

Kim, is this supplement something we can just buy in the health food store? Do you know what name it's sold under?

my son is about the same size as yours, and dr. l prescribed 4 weeks of prednisone-- 30mg first week, 20 second, 10 third, 5 fourth. The prednisone came in 10mg tablets so 3 tabs daily week one, then two, then one, then 1/2.

I also believe a disproportionate number of PANDAS kids are gifted. I wonder if it has anything to do with sensitivity of the blood brain barrier. Peagreen's theory of overcompensation is also interesting. My son's IQ (measured twice, at age 4 and 7) is upper 140s...even factoring the much lower scores on processing speed and working memory. However he is so unfocused and hyper that he can't go to school.

I don't want to scare anyone but... I toyed with the idea of buying prednisone from a canadian site this summer, because I couldn't get anyone to prescribe here and it seemed ridiculous to drive 12 hours and pay $600 for such a cheap drug. I asked around a little about possible repercussions, and one person told me that after she ordered drugs online the Feds came to her door. I don't know if this is true, or if true whether the person was ordering controlled substances or something (probably)... but it was enough to scare me away from the idea.