melanie

So far on the forum, we seem to find that prednisone (a very specific type of steroid that is highly anti-inflammatory and immunosuppressant) provides only temporary relief. While prednisone does calm the immune system, if the original triggers are around (virus, bacteria, auto-immune) then when the prednisone is stopped the B-cells will reactivate and release more antibodies. If the original trigger is gone, then prednisone can be effective at breaking an inflammation cycle. Buster P.S. And prednisone isn't anything to mess around with. It has lots of nasty side effects if someone is on it for any prolonged period. It is not the same thing as the anabolic-androgenic steroids (fake testosterone) you were referring to. Prednisone is a very specific synthetic corticosteroids that mimic the action of cortisol (cortoisone) -- prednisone is a immunosuppressent and anti-inflammatory. If Danny has low Igg and low IGa levels will steriods be a good thing or a bad thing

oK but autism is biologically base and Pandas isnt even recognized by insurance companies so unless we commit our children were not any better off with this are we?Most of us that are covered for anything by our insurance company is for immune deficient issues

How much of the steroid would you typically use 15 yr old 140 lbs on clindmycin

So do you think I should try them with danny? HOw long are the results?Are they lasting results (if you get them)? Melanie Melanie, I can't tell you what to do- our children may have entirely different reactions. For us, the results were only while on the steroid, but we had a lot of other stuff going on. Thanks did you do the steriods with the antibiotics (at the same time)?

So do you think I should try them with danny? HOw long are the results?Are they lasting results (if you get them)? Melanie

Hi Melanie, There are a couple of theories here. PANDAS is thought to be caused by three things: an immune response that generates an anti-neuronal antibody a failure of the T-reg cells to suppress the anti-neuronal antibody a breach of the blood-brain barrier such that the anti-neuronal antibody reaches neuronal tissue So prednisone slows down the production of antibodies (what peglem wrote) what affects #1 and acts a bit like #2. In addition, prednisone is highly anti-inflammatory (by reducing inflammatory cytokines) and thus can close #3. Given that advil also seems to work and that IVIG seems to work (but the antibodies seem to stay high based on our anecdotal experience). I think it is fundamentally #3 at play -- prednisone temporarily is closing the BBB. Buster Ok But if danny already has a low IgG levels and has specific immune issues is this ok PEG LIKE YOUR dd danny is on the spectrum.Did Dr L say anything about that.Will the steroids help for as long a period as the IVIG ? I cant handle this much longer,Im really tired of tring to figure all of this out. Wont steroids make him angry Im a Phys Ed Teacher and a personal trainer and I know in all of my years of teaching and working with athletes ,steroids seem to make people a little "nuts".Is this ddifferent? Steroids weaken the immune system Isnt that bad? BUSTER HELP!!! Melanie again

Hi Melanie, There are a couple of theories here. PANDAS is thought to be caused by three things: an immune response that generates an anti-neuronal antibody a failure of the T-reg cells to suppress the anti-neuronal antibody a breach of the blood-brain barrier such that the anti-neuronal antibody reaches neuronal tissue So prednisone slows down the production of antibodies (what peglem wrote) what affects #1 and acts a bit like #2. In addition, prednisone is highly anti-inflammatory (by reducing inflammatory cytokines) and thus can close #3. Given that advil also seems to work and that IVIG seems to work (but the antibodies seem to stay high based on our anecdotal experience). I think it is fundamentally #3 at play -- prednisone temporarily is closing the BBB. Buster

Ive never tried steroids with danny he did the IVIG and had great results temporarily.Hes on Clindimyicin 600 mg a day and Dr T is willing to do steriods were still awaitng the IV but should I try the steriods? Will it work like the IV did.I know that the IV works so I dont want to do it just for that reason,If He could actually get relief for a while then yes we will try it .\\Again Thanks for any help . Melanie

We increased Dannys clindimycin on Friday and he seems to be ticcing a bit more.That doesnt seem good to me.Now Im thinking is it yeast or just increase tics or is that soposed to happpen with increase of antibiotics? I hate this crap!! Melanie

Good to hear Dr T is helping hes a great MD. Let us know what happens ... Melanie

Ok soagain is there like a home yeast test to take? Melanie

Im kindof confused about this too.Dr T didnt seem overly concerned about yeast with danny but did recomend florestor(sp) and I found it at costco 50 pills for 32.00$ not bad.Im not sure if his behavior changes from probiotics but How would I know if its teast if I dont do a test? Ive had tests before and havent had yeast issues.But havent been on antibiotics like this before either.HUMMM any one have anything to add? Melanie

Im in Central NJ where its very very cold!! If you know of a good therapist that uses this type of therapy PLEASE let me know Thanks Melanie

I would like like to get some of the information is you could provide it I know I need to do more theraputic interventions for danny They always seem to be a dead end of money more money and I get no where . Melanie

Im glad everything went well Now the healing will begin.... Melanie

This is something danny struggles with daily.We always tell him whats going to happen before we do it.That usto work when he was younger when we could control his daily life but now that he older hes on his own alot and sometimes things just dont go as planned.He does not like that at all.Today at school he bought lunch and they didnt have what he planned on getting ...Not good he got angry and flipped a chair and cursed his teacher .He forgot his shorts at swimteam and slammed the door in the club.Little things just make him angry. Thats a big issue with us. Melanie

Realistically, you can probably only get to #1 on this list. I'd use [Perlmutter1999]Perlmutter SJ, Leitman SF, Garvey MA, "Therapeutic plasma exchange and intravenous immunoglobulin for obsessive-compulsive disorder and tic disorders in childhood", Lancet 1999; 354 : 1153 – 58 http://intramural.nimh.nih.gov/pdn/pubs/pub-5.pdf as the starting point. Then add Kessel http://www.jimmunol.org/cgi/reprint/179/8/5571 and probably Kirvan: [Kirvan2006] Kirvan CA, Swedo SE, Kurahara D, Cunningham MW, "Streptococcal mimicry and antibody-mediated cell signaling in the pathogenesis of Sydenham's chorea". 2006 Autoimmunity 39 (1): 21–9. http://www.pandasnetwork.org/CunninghamJNICaMKinase.pdf Not sure if Dr. T can offer anything on 2-5. Oh, by the way, if anyone throws Singer or Kurlan at you, you can use their recent reply in http://pediatrics.aappublications.org/cgi/...22/5/1157-a.pdf that says "We are unable to fully disagree with the conclusion of Alvarenga et al that “GABHS may still have a major role in PANDAS,” because as we pointed out, our study was designed to examine the relationship between acute GABHS infection and exacerbations of PANDAS but not the onset of PANDAS." They studied kids with long term tics (> 3 years). Did not study children with signfiicantly varying OCD presentation. It bugs me a lot that those guys can pull Tourettes kids and then try to draw some conclusion about PANDAS rather than just usign the money to check the experiments of Kirvan. Sigh. Buster I got approval not easy but under immune defiency dx he was approved I also got a pediatric specialist from BCBS and cried alot I would do anything. I was approved had the Iv then wanted to do it again got a refusal then Found Dr T he helped alot so were just awaiting the next infusion .I wish it was tomorrow bbut we have to wait just a little while.I encourange you to call the insurance company over and over ,cry tell them you may have to put your child in the hospital for long term care (thats very expensive) (not that your going to) find out a supervisiors name ask your md to do a appeal, call your employer dont accept no no matter what. Melanie

Both of my kids got the chicken pox shot( pandas son )danny 15 got the cp not really bad but none the less My daughter non Pandas didnt HUMMMMMM.Danny had a weak immune system when he was little thats why he was infected,thats how the pediatrician explained it to me.If I was to do it over again neither would have gotten that shot or many of the others that are unnecessary.But hey cant change the past onloy the future.I will no longer just say ok well lets wait and see. Melanie

Danny is petrified of snakes . We live in NJ and we have some snakes I guess ,But really not where we live.We cant say the word ,He wont watch a movie unless he knows theres no snakes,His books have to be checked before he reads them (anything with pictures) He recieved a Michael Jackson book for the holidays and theres a picture of a snake he wont touch it. What are your kids affraid of? melanie

where is the post?

Were right there with you Michael My so is 15 and been there ,done that.We had so many Psychs evaluate him.None knew what to do,they all wanted to give him medications and asked stupid questions.Even the Neurologists before Dr T were speechless,and wanted to add medication after medication.Im ok with meds if they work.Hes on risperadal now I am not a fan but he was off the wall so we had to. The best so far was the IVIG he was pretty much normal for some time and we are still waiting anxiously for the next dose.Hes on antibiotics and is doing ok.I hope your mds are willing to listen to you and not just medicate him.Are you in NY?Im in NJ and have seen all of the worthwhile mds in the area. Thinking about you Melanie

This sounds very familure!!Does your ID md last name start with a B and end with an L ? This exact situation happened to us our ID md wanted so much to help but kept refering back to the neurologist .He did give us antibiotics . That was several mds ago. My advice is move on right away dont waste your time educating him...You dont have to listen to me but Ive been there well Ive been everywhere.Its not that they dont want to help ..its that they are not sure and just like us , when your not sure you do well..nothing..And we know thats only going to work for a short period of time.By the way screaming is going to hurt your throat.Try some wine LOL.Take a deep breath and remember when one door shuts a window is opened? Melanie

Sorry Michael keep a close eye on him there We saw Dr Chiriboga at Columbia she doesnt believe in pandas but she very helpful.She also doesnt take any insurance She likes psy meds alot too.

I think thats so funny.I wouldnt even know if those posts are true or not? They could be making stuff up for all I know.I do like reading them though.. Melanie

Hes not using the clindimicin for acne,But I was thinking ,if its a strong enough dosage to keep him strep free then wouldn't it be to keep him clear.His pimples aren't bad at all right now but when his throat hurts or his ear huts or his glands are swollen it seems to get worse.I think his right ear is bothering him so we will see this week.Still waiting for the IV hopefully its soon!!!