PANDAS: Link to another tourettes/ocd article

[michele]

I agree it is good to see another Neurology Dr. discussing PANDAS research. However the article is a few years old, I had seen it awhile ago. I also wonder about the IVIG treatment. Why is it Dr. K is the only Dr. (maybe Dr. Gupta) suggesting IVIG will work for PANDAS? It just makes me question things. I know the DAN! Dr's use IVIG for immune autism issues also though. There are so many similarities between TS and PANDAS for my son. My son most likely had the genetic predisposition for tics from my husband's family. Some mental illness on his side also. Then he had the compulsive issues from mine (my 96 year old grandma is nuts about handwashing and worries constantly, I am a neat freak too). Then like Tammi we add in a bunch of shots and their immune system go haywire. Then he gets the strep from the live virus in the shots. Then he gets tics that wax and wane with illness but not always just with strep, compulsive likes, and mood swings. I have been happy to get a great neurologist in Dr. Erenberg who diagnosed him and treats him as TS (for the time being meds). Yes I still worry it is immune related but again like Tammi and Chemar has mentioned isn't most TS immune related in the waxing of tics? I have a diagnosis from Dr. Murphy for PANDAS also but that does not get me far when nobody here in the state of OH understands or believes in PANDAS. Again I wonder why? Now it has been years since Sweedo found PANDAS as a diagnosis and did her research. His Dr. at the Cleve. Clinic said recent publications have made Dr.'s even more convinced PANDAS is not a separate disease. Couldn't they be one in the same? All I care about is the right treatment. I don't want any furthur damage done to my son's brain if it is inflamed though from the strep. I do notice after he is sick as he has been this week with a virus, he is more moody and tics more. I wonder if this is possibly related to inflammation in the brain or just from the TS waxing. I would like to see if another Dr. other then Dr. K truly understands and wants to treat PANDAS with IVIG. Dr. K doesn't accept insurance. So his treatments which are very expensive are all out of pocket. What about this guy in Cincinnati Dr. Gilbert? Has anyone ever contacted him? I see he did some research on PANDAS on his site. http://www.cincinnatichildrens.org/researc...ald-gilbert.htm Let me know if anyone has contacted or seen him.

We need to stick together here. We are all here for the same purpose to get advice and support for our kids, ourselves or someone we care about. I really appreciate having a place to talk to other parents. This is truly an amazing site! Blessings. I hope I have not offended anyone.

 

Michele

 

 

It's wonderful to see another doctor talking about and recognizing PANDAS! I wonder why he doesn't talk about IVIG as treatment.

[EAMom]

Michele, Indigo,

 

I suspect this guy did not mention IVIG for political reasons (this was a university/alumni magazine). Just as Stanford won't do IVIG for PANDAS, there may be something similar going on at UMDNJ. I'm sure he's aware of the Swedo studies with IVIG. He probably is just not in a position to publically state that as an effective treatment if his University (like Stanford) refuses to treat PANDAS patients with IVIG (although they do IVIG all the time for other conditions).

 

After all, it wouldn't look very good if he recommended IVIG in the article and then people became upset b/c UMDNJ medical school wouldn't do the procedure (for PANDAS). Sometimes universities can be very stodgy institutions...everything needs to be by book.

 

Also, there is "politics" going on at NIMH...which is why the PANDAS research is now pretty much nil...

[P_Mom]

Michele,

I agree with you in the statement "all I care about is the right treatment." I think that is exactly what we ALL care about and are seeking answers to. I don't think dr.K is the only doc who recognizes IVIG will work for PANDAS, however, I think he is one of few that has taken the step to actually start implementing the procudure, somebody has to be the first, hopefully many will follow in the future. It is well documented by the NIMH that IVIG does give substantial relief to PANDAS kids. Oh, just FYI...dr.K does except insurance, so far, we have paid minimal out of pocket fees considering all the help he has extended to us.

 

EAMom,

I think you are right on about the politics...there are politics involved in everything..unfortunately. A lecture by Susan Swedo hinted at things they were "not allowed to use," therefore, of course, not allowed to endorse. Also, when I spoke to researchers twice by phone at the NIMH, and through several e-mails, they could not/would not even comment on IVIG, nor could they recommend a particular antibiotic when I asked...their hands are tied. Even with their studies published about the effectiveness of IVIG, PEX, and antibiotics! All they could tell me as far as treatment was that "prophylactic antibiotics work very well." That is all I could pry out of them..she limited my time and said she could TRY to answer only a couple questions...then she pulled the plug. Yes, I think MUCH is going on behind the scenes that we are not aware of! And, that very likely may be why Dr. Trifleiit did not mention IVIG. How will we ever know?

[michele]

Thanks for the info on insurance. Is the IVIG covered under insurance? I was told by another source who went to him for the IVIG that he does not accept insurance for the IVIG and she had $10,000 + in cost to him. I am so glad he does accept it. It is great you have not had to pay much out of pocket. The DAN! DR. we saw did not and I thought it was similar to that. I did not know the study from NIMH recommended the use of IVIG for PANDAS. Could you post that link here ? It is strange that IVIG is used for other childhood illness but is not being recommended for PANDAS now. I am interested in why Sweedo has now turned her focus to Autism research. I do wonder what went on behind the scenes at NIMH that happened to the PANDAS theory?

 

 

 

I do wonder if they will find a connection between the PANDAS and autism.

Michele,

I agree with you in the statement "all I care about is the right treatment." I think that is exactly what we ALL care about and are seeking answers to. I don't think dr.K is the only doc who recognizes IVIG will work for PANDAS, however, I think he is one of few that has taken the step to actually start implementing the procudure, somebody has to be the first, hopefully many will follow in the future. It is well documented by the NIMH that IVIG does give substantial relief to PANDAS kids. Oh, just FYI...dr.K does except insurance, so far, we have paid minimal out of pocket fees considering all the help he has extended to us.

 

EAMom,

I think you are right on about the politics...there are politics involved in everything..unfortunately. A lecture by Susan Swedo hinted at things they were "not allowed to use," therefore, of course, not allowed to endorse. Also, when I spoke to researchers twice by phone at the NIMH, and through several e-mails, they could not/would not even comment on IVIG, nor could they recommend a particular antibiotic when I asked...their hands are tied. Even with their studies published about the effectiveness of IVIG, PEX, and antibiotics! All they could tell me as far as treatment was that "prophylactic antibiotics work very well." That is all I could pry out of them..she limited my time and said she could TRY to answer only a couple questions...then she pulled the plug. Yes, I think MUCH is going on behind the scenes that we are not aware of! And, that very likely may be why Dr. Trifleiit did not mention IVIG. How will we ever know?

[P_Mom]

Michele,

Some insurance companies are starting to cover the IVIG infusion...you'd just have to check. Actually, it is my understanding that the IVIG is billied completely seperate from dr.K's services...the IVIG distributor and the hospital supplying it do the billing on the IVIG. So, when you go to dr.K for IVIG, you will get separate bills...one for dr.K's service and then another for the IVIG. Both of which MAY be covered by insurance...at least partly.

 

I am not saying the NIMH will actually recommend IVIG for PANDAS...just that they did a study where it was found to be effective in the treatment for PANDAS. On one publication, it does mention "considering" IVIG or PEX in some severe cases......but not as standard treatment. I do believe they can't outright recommend it for "political" reasons. IVIG's supply is limited...that is why it is so expensive, I wonder if that has anythig to do with it.?

 

I don't think anything happened at the NIMH to actually negate the PANDAS/IVIG/PEX "theory", or the PANDAS "theory" in general .....actually to them I believe it is a proven fact. Swedo was very convicted on the existance of PANDAS....in one of her lectures she stated she can't understand why doctors refuse it. What I meant was something likely is holding them back from freely speaking about it and its treatments.

 

 

 

EAMom,

I wanted to tell you that I totally got what you meant when you said "we were lucky our daughters symptoms were so severe, otherwise it may have totally flown under our radar." I said the EXACT same thing to my husband a couple months ago...that we were actually blessed our younger son presented so severe, otherwise, we may have never known what we were dealing with and proper treatment would have likely not happened. He looked at me like I was nuts, but, really it is true.(he sees it now) Both my sons presented with symptoms of their PANDAS after immunizations ( I will say now that I know other kids have presented with symptoms after immunizations and they are not PANDAS...I am not implying they are..just my experience), and it wasn't until they both contracted strep afterward that the symptoms exploded (younger son) and we got the PANDAS diagnosis. My younger son presented a few weeks ahead of my older son..and his symptoms were so severe, that when my older son presented, we knew what we were dealing with. (he presented MUCH milder with only tics which were not severe...we were told he had simple childhood tics..not to worry..... but because we pushed forward because of our younger son..my older son also received a PANDAS diagnosis because he presented the same time with the same strep, among other reasons.) My older son was diagnosed quickly and put on antibiotics within 2 DAYS of onset...he had a DRAMATIC and quick (one day!) response to antibiotics, and has been kept on treatment according to PANDAS protocol since and has basically no active signs of the disorder today. Now, if I had listened to the initial docs (2 of them) statements to let it go and not worry, I wonder how he would be doing today........??? I attribute his success to younger son's explosion of symptoms, which therefore led to older sons rapid, accurate diagnosis, and then ultimately to his very postive, quick response to antibiotics. The antibodies were given very limited time to do their dirty work.

By the way, my younger son is also doing extremely well!!

 

Just wanted to say I understood that quote totally. Our explosion was also a blessing in disguise.

[Indigo]

My doctor is in PA and I guess we are his experiment with PANDAS, lol. There has been one other patient with PANDAS at the practice with another doctor but not as classic as my dd is what they said. He's a DAN doctor. The one treatment that he would like me to try is something called peptide shots which are used on patients with autoimmune like eczema, chronic hives, etc. There is no certainty that it will work and she may have to get up to 5 treatments (just a shot). I have been going back and forth between trying these (which do no harm and no side effects) and just going with the IVIG. I have no idea at this point what to do.

[P_Mom]

Indigo,

What part of PA are you from?