bronxmom2

You are in NJ, right? Why don't you go SEE Dr. Latimer instead. She will write a script for immunological blood work, which you can take to a lab or to your regular pediatrician. If he had a PID before.... it would make sense that he still has one now. Do you have documentation of his earlier immune deficiency? You need someone who can see the big picture--- both the PANDAS and the PID... What about Dr. Rosario Trifiletti? He's in NJ.

I was thinking the same thing. Is Dr. L willing to do the PEX without the Cam Kinese #?

So is that considered a "fail"?

Thank you so much for answering. I am also homeschooling... but I wish we could get a teacher to come 20hr/week! Has your son suffered academically because of PANDAS? Mine has severe attentional problems, which is the biggest reason we are homeschooling... though giving his system a rest is another big reason. He is way ahead of his agemates in some areas, but significantly impaired in others. I just don't see how a school could meet his needs right now. Did you feeling that both IVIG and PEX helped your child's OCD? You mentions that his tics are lingering, but what about the OCD? Thanks!

Interesting. 3 and 26 were my son's highest as well. He is not considered to have failed the pneumoccocal titers, though he got <1 on 8 of them.

Wow, this board is such an incredible source of information! This could be a case study for the revolutionary power of the internet in information-gathering. Linda, can I ask you... was PEX more effective than IVIG for your child?

My understanding is that some of our kids have an underlying primary immune deficiency (PID) and some do not.

Melanie, have you had your son tested for an primary immune deficiency? I know this isn't what you want to hear, but from your experience with IVIG (effects seemed to wear off after a month) it seems like your son might need it monthly. In which case it seems like you might need an immunologist to prescribe it monthly? My understanding (could be wrong): Dr. K will probably do IVIG again, but you will have to pay out of pocket and hope for reimbursement. Dr. L might be hesitant to order it again since you have just done it, and there may be more going on than just PANDAS. Are you working with an immunologist? If you can find an PID, the ped might do more ivig for that...

Yes we did. This was by no means an easy choice. PEX had the advantage of what appeared to be immediate results whereas IVIG was looking like 4-6 weeks before we'd see results. Swedo tended to use PEX for tic-primary disorders and IVIG for OCD-primary disorders. Our daughter's symptoms were primarily OCD and the secondary movement disorders seemed more OCD/chorea than a tic. Our biggest concern with IVIG was that we might be introducing some illness that is not yet tested and this haunted me personally and made me want to exhaust the other options before proceeding. The first 2 weeks post IVIG were torturous for I worried we had not only opened the possibility for a blood born illness, but also all her symptoms were coming back. Thank goodness for rock solid EAMom -- it was critically important that we were aligned on what to do so as to be supportive post IVIG. In my opinion, there is no reason to believe that PEX will be more permanent. Perhaps the critical item to consider is that the half-life (also known as the turnover rate) of antibodies is around 4-6 weeks (yes, it varies by antibody, but this is likely close). So, with PEX you'd have to be darn sure that you got rid of the original strep infection otherwise the antibodies will just come back. With IVIG, you actually are likely to get some "correct" antibodies to strep (meaning 1 in the 10000 donors probably have such antibodies) and thus these antibodies actually can take out remaining strep. Second with IVIG, there is some research (Kessel's paper for example) that the inrush of foreign antibodies reset T-reg cells. While this is incredibly preliminary, it gives some rationale as to why IVIG might have longer term sustainable effect over PEX. Now on the downside, we're counting in IVIG on the incoming antibodies (T-regs) recognizing the "faulty antibody" and taking it out. We just don't know how likely this is relative to the very concrete evidence from PEX at removing antibodies. So what you have is that IVIG has a probability of removing faulty antibodies and a possibility of resetting T-regs. PEX has a definite ability to remove the faulty antibodies and is unlikely to reset T-regs. So with all of that and that my dd9's symptoms were more OCD -- we went with IVIG. I totally appreciate why mom_md went with PEX given the severity of their symptoms and the higher tic component. Both approaches seemed effective. No matter what it is incredibly stressful to decide on either course. Actually, it isn't the T-cells, but rather the T-regulatory cells. It may also be related to B-regulatory cells. We're pretty certain T-reg cells are involved because the antibody is targeting GlcNAc carbohydrate which is a host carbohydrate. T-regs would normally suppress this antibody, but for some reason aren't. There is research that high levels of dopamine seem to suppress T-regs -- so perhaps that is the connection. We don't know. Regards, Buster Wow, so much to digest. So if we do wind up going with PEX... it's crucial that he's strep-free at the time? As in, give him full strength abx between now and then? Also, if my son didn't have high levels of dopamine (only his anti-lyso-whatever was high), is it possible that the T-regs aren't involved in his case? My son also has no tics at all- only OCD and chorea. Such an agonizing decision.

Yes, Buster, thank you! You have a real talent for making this understandable. Is your daughter still doing well? Did you consciously choose IVIG over PEX? In your opinion, if you have a child with no primary immune deficiency, who has probably has probably been afflicted with these antibodies/inflammation for 4 years; whose symptoms are behavioral-- extreme obsessiveness and impulsivity, hyperactivity, ADHD, and anxiety-- and seem to be deepening month by month... which would be a better choice? Is PEX more... direct somehow, because it actually removes the antibodies? Is there some reason to believe that PEX could be more permanent? Again, thank you! Oh, and by the way... cam kinese of 160, anti-lyso... antineuronal antibodies 640 (4 times control) How do you know if the T Cells (#2) are involved?

Got my answer. Turns out she thought that because he'd been sick so often, there was a very good chance he would have an PID or some other significant immune deficiency, in which case IVIG would apparently be a better treatment than PEX. Since he does not have a PID, She agrees that PEX is the way to go, and we are trying to switch it. Phew. I don't quite know what to think, but what a roller coaster.

Can you tell us more about the depression? Is this depression in a child, or an adult?

She concurs that they are normal.

Bronxmom, I would definitely get a second opinion. Does your ped understand PANDAS and that an immune deficiency can be related? If you can find an immunologist who understands PANDAS, that would be ideal (a tall order, I know). Good luck and keep us posted! This ped doesn't really understand at all... they just ran the blood for me to send to Dr. Latimer per her order. It's just funny that the pediatrician assured me over the phone that everything was totally totally normal on this report (with that tone in her voice that they reserve for crazy moms)-- I had to keep pressing them to send it to me-- then I finally get it and everything's low.

I had the immunological bloodwork done and finally got the results after almost 4 weeks... I spoke the ped last week who said they were all "normal," and that he failed only 5/14 pnuemococcal titers. Now I am looking at the numbers myself, and I see that the IgA and IgM are indeed right in the middle of the normal range. The IgG subclasses 1-4, however, are all at the very very bottom of the range. Does this constitute a deficiency after all? Is it just me, or does my ped have a funny idea of normal? Do immunologists look at these numbers more critically? Also, on the pnuemococcal titers, it says antibody levels >1 demonstrate immunity... but by this standard he actually failed 8 of them, though it's true that he was only out of range, >.04, on 5 of them.

I decided to pay for a phone consultation this afternoon to ask her.

Ugh, I don't know, I'm driving myself crazy wondering the same thing. I will be there the week after you.

So, my mom finally accepts that my son has PANDAS, now she's asking just what is the IVIG, why will it help, and what can we expect? (She's coming to help take care of my baby when I bring my son to Georgetown for IVIG...) Embarrassing... but I find I can't really answer her satisfactorily. Anyway, can anyone give me a concise explanation (or a link to one) of the mechanism of IVIG (and PEX)? (I'm beginning to suffer from PEX envy.) Thanks!

Is this GABA the same one you can just buy at the health food store?

Hi, mine is also not a thin kid and has never had eating issues (he's half polynesian and he he's built like a brick), he is almost done with the 4-week steroid course and he's eaten A LOT and probably gained 5 pounds. He had a six pack before (no kidding!) and now he's got a little tummy. I started out planning to restrict his diet to avoid too much weight gain but ended up focusing on trying to keep him as active as possible. He just gets so hungry there's no denying him. I've been careful to start out each day with an much protein-heavy food in my bag as possible (boiled eggs, nuts, peanut butter sandwiches) to avoid having to buy food along the way, where there's little choice but junk. I also bring fruit, which he will not normally eat without cajoling... but another good thing about them being so hungry is that they'll eat stuff they wouldn't normally touch.

Of course the steroids also make them really hungry.

Does anyone know if the two-day PANDAS IVIG works better if the kid is relatively healthy at the time? My ds is just finishing his 30-day course of steroids (which worked for about the first week and wore away as we tapered down) and now I am paranoid because I know his immune system is even more vulnerable than usual. In fact I was keeping him out of school (which was great!) but they made me bring him back. He already has a cold. Now we are scheduled for IVIG in a week and a half... does IVIG work better if the kid's not sick?

Maybe this is a dumb question but does strep in the sinuses look and feel like sinusitis? I seem to have chronic sinus problems, which do clear with antibiotics (I'm usuually given a Z pack if I really press for it) but seem to come right back. I wouldn't really care at this point, honestly, except for this idea that we might be exacerbating our own kids...

I wonder if this also plays into their writing difficulties? My son is physically able to write just fine... but cannot put words on paper without panicking. It's like the process of selecting words is excruciating. Mine was also an extremely early talker and now seems to lose his linguistic abilities sometimes. He just shouts "mom?!?" "mom?!?" "mom?!?" several hundred times a day. During his first real PANDAS episode, last fall, we had a psych eval done because we didn't know what the #$$# was happening... He scored a perfect 155 on the verbal section of the IQ test. I am really hoping that is all still there, under the swelling...