peglem

My daughter responded well to a five day course of prednisone, but got ill immediately afterwards. That makes me wonder if suppressing the immune response allows pathogens to gain strength during the suppression. I really don't know enough about exactly how prednisone works, but I'm hesitant to try again unless I'm sure she doesn't have something (strep) brewing at the time. On the other hand, would love to have another 5 days of symptom suppression.

So, if you had, say an IgA deficiency, could that contribute to a carrier state, since the mucosal attack would would be nearly absent? Here's the thing- my daughter is IgA deficient (but not complete absence) and IgG4 deficient, but whenever I look up the significance...it seems like there isn't much known...IgA deficiency seems to be associated with autoimmune disorders....IgG4 is the most common deficiency. These are not low as "in lower range for normal- both are below normal range- We will be seeing both a rheumatologist and an immunologist w/in the next couple of weeks, so I'd like to know what I'm (and they) are talking about. In the past, these specialists have declared my daughter a carrier and acted like I'm in denial about her autism. We have these immune system deficiencies, now + the Cunningham results, so more info for them to go on, and her PCP firmly believes she has PANDAS and now knows what it is. I just want to make sure she gets treatment.

My daughter mostly self injures- smashes her knee into her face, slams her head against all manner of hard surfaces, hits her elbows on her hips (bruising both hips and elbows)- she strikes out at us when we intervene to keep her safe.

Are all the immunoglobulins made by B cells? - IgA, IgM, IgE? What is the significance of the IgG subclasses? Does each have a different job? Do they work as a team, so that one player not doing its part lowers the efficiency of the whole team? Or is it a matter of each being made in response to different kinds of antigens? Is IgG subclass deficiency caused by the failure of production or just that the body is not fighting anything that presents with the antigens that would provoke that particular subclass?

So, in light of this...how can a person be a strep carrier? If the strep is in the body and presenting antigens....why would there be no immune response? Could that be the T-regs giving an "ignore" order because the antigens resemble self. I'm probably showing how little I understand- thanks for your patience! So, IgG is antibodies manufactured by B cells? I hope you don't mind if I keep asking more questions as I think of them...part of how I process information.

Now she weighs @ 95lbs. When she started the prophylactic zith-(250mg/day 5days on-7days off) she only weighed about 70lbs. So maybe that's why effectiveness waned...Finally, today, she has started recovering from this latest illness, to where I think she will be able to go to school tomorrow. So, when she finishes the augmentem, we'll go back to 500mg zith on MWF. I think if I need to, I can get that increased- maybe every other day (Sundays worry me), or stay on the high dose of augmentem awhile longer. We should be seeing the rheumatologist and/or immunologist soon to try to get treatment (IVIG or PEX).

Wow! That's right up with ours during an exacerbation. What are you currently using for prophylaxis? Is she coming back culture positive? Are you confident that strep is actually out of her system? The last 6 weeks have been kinda crazy with the abx. She'd been on 250mg zith/day for 5 days- then 7 days off, for about 18months. Sept 1st, she had a positive rapid and was given 500mg/day for 5 days...when I reported that her OCD was still bad, she was given 500mg Keflex 2x/day, which was upped to 3x/day after 4 days, and a 5 day course of prednisone...2 days later she got sick with something (strep was neg), and prophylaxis was changed to 500mg of zith on M, W, F...we did this for only one week...she had dental work (I was told I could give the 500mg for 5 days straight w/ the dental work) and got very ill the next day. That was Wednesday of this week and she has been on 1000mg 2x/day augmentin since Wednesday. When the augmentin is finished(10 day course) we are supposed to go back to the 500 mg. zith/MWF.

Please! I want so badly to understand! We've been having a heck of a time clearing my daughter of strep. Just when we think we have it licked, it pops back in for another visit! Her CamK activation was 242%...and that was not during exacerbation...so, I'm so worried that if I do manage to get either treatment, it'll come right back.

Yes, PEX depletes and dilutes IgG -- you essentially don't have much of the IgG subclasses at the end and then your body has to make more (typically from bone marrow). So, if your body is making "naughty" antibodies, you'll just start all over again?

I think this is exactly the protocol that the immunologist followed w/ my daughter 2 or 3 years ago. While I don't think the pneumovax did any damage to my child, once the immunologist got a response (it took 2 vaxes to get a response)- he was done with her. Not only that, he pronounced her "cured" and said this had jumpstarted her immune system. When the chronic strep (he declared her a "carrier") returned, we were sent back 1 more time- her pediatrician talked to the immunologist on the phone, asking about IVIG treatment...we were told that the IVIG would do nothing because she already had all the IgG she needed to fight infections. The decision seemed to be based completely on that pneumococcal test response.

I'm not sure how literally to take your question. If you did them at the exact same time, you'd take out all the IVIG you're putting in because the blood circulates around many times and the PEX is logically a dilution action -- i.e., you keep taking out more and more antibodies till you've probably gotten a lot of them. Typically 70% reduction is consider a great PEX response. If you meant, "why not do PEX and then immediately do IVIG" -- probably the answer is exhaustion -- you've essentially spent 7+ hours/day over typically 2 days for PEX and have all the complications that might be there and then are doing 7+ hours for 2 days for IVIG. I'd also imagine that the inrush of foreign antibodies in IVIG might have much more severe response if your own immune system isn't up to snuff to take out the foreign antibodies. There are folks who have done this (see http://ard.bmj.com/cgi/content/abstract/61/1/37) but this is typically reserved for life threatening situations where an immediate response is needed and then an attempt to control improper re-emergence of the faulty antibody. Regards, Buster Thanks, Buster. You understood my question exactly, and now I understand! So, PEX depletes (or greatly reduces) IgG?

I don't understand why both can't be done at the same time- remove the antibodies and give donor Ig's. Am I missing something?

This thought has been nagging at me for the past week. I wonder if some psych meds open the BBB to deliver their payload? They have to get into the brain somehow... Tried looking it up and couldn't find much info.

It varies so much from child to child. The best antibiotic is the one that works for your child. If the zith isn't cutting it...why not give something else a try?

I am Marci-the mom of Jamie. I understand your concerns. I spoke with a mom, Marianne, yesterday who actually tried to get Augmentin (the antibiotic drug of choice now) from Germany before it became available in the US. Her request was denied. The point I am trying to make is that I know there are many variants in any one child. And Marianne explained that any stress such as illness (bacterial OR viral), immunizations, allergins, etc. can set off this autoimmune reaction in children predisposed to this process. I think that is why antibiotics are not the answer for every child exhibiting strange behavior after an exposure. However, I feel that if a child exhibits strange behaviors with sudden onset, as a parent I would be the first to say get their blood tested for Anti-DNAse B & ASO titers. And IF these levels are elevated I would demand that my child's doctor prescribe Augmentin immediately. This is one answer. It was our answer. And it could be other children's answer as well. We must keep searching for answers for children who do not respond to Augmentin. But for newly diagnosed PANDAS children...I feel they must be given a chance. Antibiotic therapy is this chance. Jamie and Sammy are here to be their hope. My wish is that all children can be free of PANDAS. Let's bring this disorder to the forefront and give parents, although we do not have all the answers, some answers. That is the mission of Beth Allison Maloney author of Saving Sammy and this is my mission. Marci Lichtenwalter Thank you for coming here to respond. I hope you were not offended by what I posted. I do appreciate what happened to Jamie and Sammy and the turmoil of their families in getting help. WONDERFUL that antibiotics made such a difference for both boys. The problem that many of us with PANDAS kids are having is that doctors very frequently believe that low ASO & AntiDnase titers rules out PANDAS, even in the face of positive strep cultures...and our children are denied treatment because of it. I'm so glad those high titers enabled you to get treatment for your child....but, while high titers are diagnostic for a prior strep infection, they are not diagnostic for PANDAS and that is where my angst comes from. -Peggy In my opinion, any physician that would deny a child treatment in the face of a positive strep culture is taking that child's life into their own hands and destroying it. These physicians must be held accountable for their irresponsibility and should not be in the healthcare profession. A physician MUST be willing to investigate all avenues. There is more and more information on the PANDAS frontier. WE NEED the medical community's support WE NEED one goal...TO ERADICATE PANDAS. Marci Lichtenwalter read more on www.jamiesstory.wordpress.com Well, they treated the strep...just not the PANDAS, because they thought the low titers meant they were negative for PANDAS....Its a bit of confusion in the medical field over what the titers mean...its not that the doctors are not wanting to help our children (well most of the time), they just don't have the right information. You told Jamie's story the way it happened for him, and its good to get that story out there. My fear is that it may reinforce the notion that those titers are a test for PANDAS.

We tried remeron...we got rages. tried a lower dose...rages. Gave up. It sounded like such a good idea to try it- my daughter needed sleep and appetite stimulation. Wish it had worked. But,my child tends to react badly to anything that is anticholinergic...even benedryl affects her that way.

I am Marci-the mom of Jamie. I understand your concerns. I spoke with a mom, Marianne, yesterday who actually tried to get Augmentin (the antibiotic drug of choice now) from Germany before it became available in the US. Her request was denied. The point I am trying to make is that I know there are many variants in any one child. And Marianne explained that any stress such as illness (bacterial OR viral), immunizations, allergins, etc. can set off this autoimmune reaction in children predisposed to this process. I think that is why antibiotics are not the answer for every child exhibiting strange behavior after an exposure. However, I feel that if a child exhibits strange behaviors with sudden onset, as a parent I would be the first to say get their blood tested for Anti-DNAse B & ASO titers. And IF these levels are elevated I would demand that my child's doctor prescribe Augmentin immediately. This is one answer. It was our answer. And it could be other children's answer as well. We must keep searching for answers for children who do not respond to Augmentin. But for newly diagnosed PANDAS children...I feel they must be given a chance. Antibiotic therapy is this chance. Jamie and Sammy are here to be their hope. My wish is that all children can be free of PANDAS. Let's bring this disorder to the forefront and give parents, although we do not have all the answers, some answers. That is the mission of Beth Allison Maloney author of Saving Sammy and this is my mission. Marci Lichtenwalter Thank you for coming here to respond. I hope you were not offended by what I posted. I do appreciate what happened to Jamie and Sammy and the turmoil of their families in getting help. WONDERFUL that antibiotics made such a difference for both boys. The problem that many of us with PANDAS kids are having is that doctors very frequently believe that low ASO & AntiDnase titers rules out PANDAS, even in the face of positive strep cultures...and our children are denied treatment because of it. I'm so glad those high titers enabled you to get treatment for your child....but, while high titers are diagnostic for a prior strep infection, they are not diagnostic for PANDAS and that is where my angst comes from. -Peggy

I used to teach regular ed and I can think of 4 children who I'm pretty sure had PANDAS-knowing what I know now, of course.

I appreciate the understanding.

Oh, I was just coming back to apologize for my snarky reply...my daughter has been pretty ill all week and the last 2 days so overcome with the OCD that she's even less functional than "normal". I'm in no mood to hear about other people's easy answers....but in my heart, I'm really happy for those who do have easy answers, and envious. This has been going on for all of my 15 year old daughter's life...it was dx'd as autism at such a young age and hence this sort of thing is considered normal for her by most professionals.

I guess my kid could be the poster child for what happens when PANDAS starts early in life and isn't treated.....because when that happens, its definitely not as simple as antibiotics! Don't get me wrong, PANDAS needs the press...just that titer checks and abx may be the answer for some kids, but so many need much more aggressive treatment and those of us who have been dismissed because of low titer counts...kinda feels like that's happening all over again.

Swedo didn't do a study on which to base the statement that you can have low titers and still have PANDAS. @ 2) above- I don't even think many doctors realize that ASO and AntiDnase are not antibodies to the strep itself, but to substances produced by strep. But it also seems to me when they have negatives titers for those 2 in the face of known, positive cultures, they'd be investigating why those titers are not being produced instead of assuming the strep must then somehow be harmless. (did they have to turn in their curiosities to get a medical license?)

I think it came from people misunderstanding...the titers were used as diagnostic criteria-but only diagnostic for strep, in the absence of a positive culture...This was overgeneralized by many people, physicians included, to mean low titers indicated no strep, which if you're not careful could be implied... I mean, if high titers prove a previous infection- then it does seem like low titers would prove the opposite.

On page 11 of the mouse model paper: I don't think all autism is PANDAS, but I think PANDAS can cause autism. But, I've come to the realization that autism is not a diagnosis at all-just symptoms of some underlying condition/disease. I think my daughter's PANDAS is the source of her autism symptoms....But, treating the PANDAS at this point will not repair the messed up development- only give her an excellent shot at doing some of that development and maybe getting back some of the things she's lost.

I PM'd it to you!