bronxmom2

I agree, he will order some extensive blood work that takes time to get back... maybe you could call the office and ask them to order the tests before you go, so he will have the results when you meet?

I'm sorry to have scared you! I was afraid of that. I'm sure you are doing the right thing for your son. One thing is that Dr. B is learning along with us, he seems pretty open about that, and his protocols are shifting. He was initially going to do monthly ivig at a lower dose, but switch to bimonthly at the higher dose after conferring with Dr. K. I agree that a neurologist should see the hands. I just don't see much gained by another trip down to Dr. Latimer-- we have no more money to spend-- and don't want to go to any more non-PANDAS doctors.

He was on zith before and Dr. B switched him to Augmentin. Augmentin actually seemed a little better. The zith never seemed that effective to me. The one that really had a remarkable impact was Omnicef (which he took last year, when he was really sick)... but I don't think that's ever done long term. I have been wondering about the "saving sammy" dose of XR Augmentin... I know WorriedDad's son had mixed results with IVIG but the high-dose augmentin really did something. I asked Dr. B about that last time but he did not seem amenable. He is already on a pretty high dose of Augmentin for his size.

The OCD is also bad. And he's pretty "ragey." You can pretty much gauge his condition by the number of times per day that he makes his brother cry. My mommy-meter is definitely way up in the red, if you know what I mean. The truth is I've been counting the days until the next IVIG.

we both tested negative for lyme, though I know there are lots of false negatives-- something about the p41 band that lots of people here are discussing?-- so this is something I plan to ask about.

I have exactly the same igg deficiency and failed all the same pneumoccal tests... Psychology was totally useless to me. The only thing that cured me was pregnancy (and, well... before that, pot...) I had a 3 year remission until my son was exposed to strep and we started our "death spiral".

My son has had 3 ivigs. after the first, he was like your child-- ramped up symptoms, then things calmed after a few weeks. after each of the next ivigs, he was immediately and clearly improved, but it seemed to "wear off." perhaps we are doing too many ivigs. I know Dr. K advises against too many ivigs as it stirs things up. clearly we are either doing too many or too few.

Augmentin 875 twice a day

Hi all, I posted about a month ago that my son, 3 weeks after IVIG, suddenly started clenching and unclenching his hands constantly. Within a few days, his behavior had fallen apart as well. (For the first three weeks after the IVIG, he was doing GREAT and I even started to feel hopeful that we might put all this behind us...my mother visited and thought he was like a different kid (though I don't think she ever quite believed in the PANDAS beforehand) The consenus when I asked about the hand clenching (we never had any symtpom like this before- mostly just obsesssiveness, defiance, and attentional problems) was that it was the transitory "turning of pages" and actually a good sign. So I have waited patiently. But it's just gotten worse. No saw tooth... just worse. His hands are now all crooked-up to the point where he can't catch a ball, use scissors, or write. I guess it's chorea, but it doesn't look exactly like the "piano playing" movement which I looked up on you tube. It looks so uncomfortable, and his hands hurt. He is sweating profusely all the time and he is an emotional mess (several times wished himself dead). He can't think or talk about anything but civil war figurines. It's heartbreaking that after a year and a half of trying to aggressively stamp this thing out, I feel like we have gotten nowhere. I personally was suicidal for over ten years and I am so frightened for him, because I know where this could lead, it will be even worse for him because he is a boy and quite aggressive. We are scheduled for another IVIG through Dr. B next week. My hunch, since IVIG seemed to "wear off" at the 3 week mark twice, is that he is one of the kids that needs them monthly. Dr. B did find an immune deficiency (IgG and failed all the pneunnoccal, plus problems with his T cell helpers) but at the time I did not think it was a serious immune deficiency and was just happy he'd found a way to get the insurance co to cover IVIG.

can't you just make the appointment with the receptionist or whoever is answering the phone?

I think it's a great idea too, but wouldn't it have to be a plasma drive? Plasma is harder to donate, and they usually pay the donors, which raises all kinds of ethical and other issues.

I notice our kids seem to have some strange attributes, seemingly random stuff that keeps coming up, not usually associated with PANDAS but connected, I think. Here's stuff I've noticed in my son: - tooth problems - unusual sweatiness- runs very very hot - weird pervasive pronunciation problems (in a verbally gifted kid) I'm curious what kinds of stuff you've noticed in your kid that you attribute to PANDAS though you've not sure if you should...

We have UHC/Oxford and they have covered both PEX through Dr. Latimer and ongoing IVIG with Dr. Bouboulis. We have not paid anything. I feel so lucky and grateful about this, because I would not be able to pay for these treatments for my kid. Dr. Bouboulis seems to have a particular knack for getting insurance to cover. See him if you can.

Wow, my son's number's were exactly the same, including the CamK.

Coco, please don't send your beautiful daughter back to that school. This "behavior plan" sounds like torture. Literally. Reading this made me really really mad. Don't forget that every child represents revenue for a school-- tax dollars. Cut them off. Has it been really hard to keep her at home? Does she like school?

In fact they have known this since the middle age. But it seems with the growth of psychology, they separated the mind from the body, overly specialized, and FORGOT.

About a week ago I posted that my son's hand began twitching about 3 weeks after a 1.5 IVIG that had really seemed to help him up to that point. I was feeling cautiously hopeful and am still trying to feel optimistic... Most people thought it was a "turning of the page" transitory tic and I was inclined to agree. Perhaps it is that. Now it is worse. He is clenching and unclenching his hands constantly. He says it hurts it he doesn't do it and they are tingling as if they are asleep. I don't like it. Why would his extremities be tingling? He is also extremely agitated, a bundle of anxiety, just looking at him you can see how clenched-up he is, he cries easily, and feels really hot and clammy even when he has just taken a shower and is sitting on the couch watching a documentary. This all came on very suddenly, a week ago... it's not the two good days, one bad day I see described with the "sawtooth" recovery. My instinct is telling me that the IVIG has "worn off." Could he be a kid that needs it monthly? He is iGg deficient (which is how we got insurance to pay for the IVIG) but does not strike Dr. B as an extremely immune-deficient kid. I recently finished a 30-day course of Augmentin on the theory that I've been carrying strep in my sinuses this whole time... and my son's sudden downturn coincided exactly with my stopping the antibiotics for myself. (Dr. B thought that was just a coincidence but I am not so sure.) This is all so confusing!

I don't think the higher dose IVIG is going to hurt her in any way, even if there are other things going on. If she will accept the treatment, I think you should go ahead with it. I am following your story and really rooting for you to get some lasting improvements!

Norcalmom, I have to comment on this post because you have described my son exactly... though he is only 7 and would be in second grade if he were in school. His mind is just "different"-- frequent cycling through intense interests-- panics in the face of easy questions-- I actually can't teach him anything but try to simply lay the groundwork for him to understand it in his own way-- the "explanations" in the book only confuse him and freak him out. He can easily convert fractions into percentages but cannot add 6+3 in his head without suffering apparent agonies. With my son, too, "something" is getting in the way, and his teachers (when he was school) described it as unlike anything they'd seen before. This ADHD-like affliction seems to be one of the most tenacious features of PANDAS. I have been tracking other parents who describe similar difficulties, and I have never seen anyone describe this "symptom" cured. The other things-- the OCD, the mood problems, the rages, the hyperactivity and the rages go away but this weird cognitive issue remains, or as you say, perhaps it was there all along and is part of what put them at risk in the first place. My son is incredibly brilliant and incredibly frustrating. He seems to already know (and understand) everything I try to teach him. School was a train wreck. Last year (before I knew about PANDAS) I had a complete psych eval done, including an IQ test and achievement testing, and I am so glad I did this because it gave me some confidence in his abilities and made me feel secure in taking him out of school and letting him follow his own path. Like Thomas Edison, right? I would love to understand why the gifted brain is so much more vulnerable, but I am quite sure it is. I believe that I suffer(ed) from an early manifestation of PANDAS. I went through my childhood with a palpable sense of being different, an acute and chronic sensation of guilt, a tendency to narrate my own actions (I subsequently wrote two novels), and uncanny mathematical abilities. Then I became suicidal, so I know where this could lead. It's real. Good luck. Don't medicate for ADHD. I don't believe stimulants will work for our kids. (Though Sammy from Saving Sammy did have success with Strattera.)

My advice is to call Dr. B's office and make an appointment, don't wait for a call-back.

I'm still scared- turning back the pages....there are many pages in this book that I don't want to read again! This guy wants us to do 2 of them a month apart, then check how its going. I think 2 a month apart is a great idea. I'd be great if there was a study that compared doing 2 a month apart (vs. just one). I believe Dr. B. is doing all his patients 1.5 mg every two months. He should be doing a study of the results!

good job! I think you will see a difference at the dosage.

I do hope it's a "turning back of the pages" but it's just different from what I've seen before. The first two IVIGs made him definitely just... worse. Stirred stuff up. This one seemed to make him so much better-- he looked and felt great for 2 weeks-- then this. It's just so weird. I woke up today with miserable allergies, so maybe that's causing something? I don't think he's coming down with anything bacterial or viral...

Thanks, a PM would be great.

You're a good man, pixiesdaddy.