tpotter

Wow! Dr. Rossignol actually explain oxidative stress and the use of antioxidants in a way that makes sense!! His handouts are here http://www.autismone.org/sites/default/files/Rossignol,%20Daniel%205-29%20Metabolic%20Abnormalities.pdf Do you know what he means by 400 - 800 mg/kg of IVIG (except for PANDAS). We've been doing 1 1/2 mg/kg, and that's a huge amount.

You're PM is still not going through. Please PM with your email, and I'll email you directly.

Unfortunately, we have also been there. My arm got broken once, and I had to lie to the ER that I was "messing around" with my DS (actually, it wasn't a complete lie, because we were "messing around", just not by choice, and it wasn't a game. I described the exact position my arm was in, so no one would get suspicious. I was really afraid that they wouldn't believe me, and either y DS or my DH could get accused. Horrible situation. Anyway, I would highly suggest that you try to get videos. She might not let you (when my DS was in rage mode, I couldn't get videos...he'd see me, and try to break the camera, but when he gets anything else, like chorea, I have no problem getting the video.) We did manage to get video several times, though, (got the camera in a hidden spot without him knowing.) Unfortunately, it makes it look like a sleep disorder or other things, but it might sway the insurance company if your neurologist has a diagnosis of post-infect. encephalitis, and they see these videos of how violent she gets. Also, if you have to prepay, and then file for reimbursement, it can help your case. Finally, if you're ever accused of anything, you can use the video as defense. Too bad we have to think this way, but it's worth a try. For the record, I think you really may have to prepay if it's that bad. You're in my prayers.

Eileen, With the possibility of immune deficiencies in the picture, I would highly recommend that you see an immunologist who totally understands ID AND PANDAS (like Dr. B.) There are plenty of good immunologists out there, but the don't understand the clinical significance to our children. The reason I'm saying this is because I suggested to one of my clients (who's 3 daughters I suspect of having PANDAS/PITANDs...one is now officially diagnosed by her pediatrician) to call a local immunologist (she picked one at a good local children's hospital with a good reputation for their immunology department.) The response was that there was nothing wrong immunologically with her 3 children, even though they are constantly getting sick, diagosed with Autism, etc. In fact, she told me what the immunologist said, and it did include the fact that he felt something was going on, but couldn't find anything (I thought his honesty was good.) Most immunologists do NOT understand the clinical significance of high CD3, low strep pneum titers, etc. In fact, I have had several doctors mention that they can't imagine insurance paying when the child has low strep pneum titers, and were blown away when they found out that ours very much does, and has a policy to that effect (you have to read your policy benefits, and make sure that you cover all bases.) Because they don't understand that, they tell you that there's nothing wrong with your child. When you get a PANDAS knowledgeable immunologist, you are able to get the whole picture. I think it's very important to consider that.

Wilma, I just tried PMing you. I can't get it to go through (you may have to clear out some of your PMs.) You probably have the old email address for Dr. B, because his nurses always answer their emails. PM me, and I'll send you the correct email.

Did she get it from you?

This totally blows my mind, given the fact that I took my (now) 18 yo DS to U Penn a few weeks ago, because of sudden onset tremors (he's already dx with PANDAS.) The neurologist was a pompous axxx, who when asked by my DS if she knew what PANDAS was, she responded: "I don't believe it exists" (I responded that he didn't ask if she believed it existed, but rather we were there, because of the tremors...she also did not care to get any research from me about PANDAS.) Additionally, we also tried to see a CHOP doc about the increasing "hard" neurological symptoms my DS 15 was having (new onset parkinson-like tremors, chorea, etc. I did NOT mention the term PANDAS, but he asked if I had heard of it. Then we got to talking, I told him about the treatments we had done (abx, IVIG and PEX), and the success rate with each for my DS. I also specifically told him what codes the docs were using (specific immune deficiency, and POST-INFECTIOUS ENCEPHALITIS.) Neither the doc at CHOP nor U-Penn mentioned anything about NMDAR Encephalitis, which was particularly interesting for my DS15, because I clearly told him that I suspected he might have strep in the brain, since the infection started in the ethoid sinuses. It just seems terribly strange (although this keeps happening over and over again at CHOP) that one side doesn't know what the other is doing. BTW...the CHOP doc REFUSED to treat my DS, because "IT WAS TOO COMPLICATED!" He kept telling me to try Dr. E. (who we have seen, and that went nowhere) or the head of the neuro department at CHOP (why would I waste my time on yet another person at CHOP, when the neurologist we were seeing could easily have consulted with another member of his own department, and the department policy on treating PANDAS has always been: "see behavioral health." So, I really, really don't understand why NMDAR Encephalitis was not even considered by either CHOP or U Penn. I guess one more reason to consider a lawsuit or class action lawsuit.

tpotter -- i know you see/have seen pretty much all the big names - one of whom i believe also has a speciatly in this -- but, have you considered migraine headaches? I would think she would have mentioned if she thought it was migraines. She does prescribe the lamictal for him, though, and his abnormal brain waves cleared to normal on lamictal + trileptal.

Our DS has been on Lamictal for about 4 years for seizures (that no one's really sure are true seizures, but maybe related to PANDAS.) Anyway, we truly realized that it was taking the "edge" off the rages, and some of the other issues, when we took him off the lamictal in the hospital while having a 7 day eeg. He escalated again, and when we slowly tapered him up again, it was obvious what the lamictal was doing...taking the "edge" off. I just assumed that it was the fact that it's a mood stabilizer and an anticonvulscent.

I have to really question these findings. Because if that was the case my DS wouldn't still be fighting chronic infection!

I have no problems with long term abx, because I totally believe there is no alternative. PANDAS/PITANDs has to be treated like it's close cousin, Rheumatic Fever, in mine several and PANDAS docs opinions. Now, comes the tough part. My DS was on azith for several years. Actually, switched back and forth between Augmentin XR and Azith, and then we started treating for Lyme. That threw doxy into the mix, and he immediately got pancreatitis (pulled doxy, put on a liquid diet, very sick, but eventually appeared to get better.) Threw several other abx into the mix, and I think the whole thing just sort of blew up on us. He now has elevated liver enzymes. they have been steadly going UP the past 4 months to the point that our Peds neuro said we needed gastro consult. He said to get off Azith. Yes, Azith can be rough on the liver, as can most other abx. We immediately took him off azith, leaving him on no abx, and he immediately came down with a terrrible case of strep (my belief is that it was never gone...just mostly being controlled, but that's another post altogether.) He is now on another abx for the strep (no option...have to treat the strep.) But keeping a very close eye on the liver and other organs. That being said...I don't think that the azith alone would have taxed his liver so much if we hadn't added in all the other abx at one time. There's no question we need to treat the whole problem, but I would recommend being more careful. My opinion? Take whatever abx is working, in as small a dose as will keep him/her from getting sick, but check liver enzymes on a regular basis. Unfortunately, abx are a necessary evil in this case (we just had a major battle with her pediatrician over the same thing, because of the fact that his liver enzymes did go up.

Wilma, After reading chemar's comment about alcoholism in your family, I would also wonder if this could be bipolar disorder. Because of my DS(now18) symptoms, it was suspected by more than 1 doctor, and we ruled it out, before starting steroids, because steroids can make a person with bipolar worse. Turns out my DS has PANDAS (not bipolar), but we did rule it out. PM me if you want more information.

I have a 15 and 18 yo, who both just got PANDAS starting in November. The 18 yo is also diagnosed with Asperger's. The biggest thing that has improved for him is his social skills. Massive improvement. My 15 yo is being helped by the IVIG, but now we have reason to believe that we did not knock out the entire infection/s, and are looking for additional co-infections (his spleen is enlarged, and wbc is low, plus ASO is elevated.) BUT, IVIG is definitely helping...just not holding until we find and kill off the **** infections! But, in answer to your question, I truly don't believe there is any age limit to helping these kids with IVIG.

[ Finally, I believe IVIG only provides IgG antibodies - it does not elevate IGA, so the IGA levels are not a clear case. Ditto, Kimballot. But, if IgA is very low, you have to be careful about the type of IVIG you use.

I am so glad to hear that your son is doing better, and even more excited that you have such an understanding police force. I was always afraid to call in the police, even though things were terribly scary at times, because I was sure it would be misunderstood, particularly since I was having so much trouble even getting local doctors on board. That being said, I highly urge everyone who has their children on several abx to regularly check their liver functions. One of my DSs is ok, but the other has had to be pulled off EVERYTHING, because his liver function has been going up for the past 4 months, and this past month took a very large rise. Right now, we are heading over to get an abdominal US to find out why his abdomen is so painful, and we have aso and antidnaseB testing, plus a bunch more going on. But, the bottom line is that he can't take oral abx now, even if it is strep (which certainly looks like to me). Keep an eye on it.

Contact Dr. Leckman at Yale. He is (I believe) a psychiatrist) nationally known at Yale in Tourettes. He is heading up the IVIG trial for NIMH. He might be able to talk to them. Bring the docs literature, like Dr. Tanya Murphy's. My DS was also treated with psychotropic meds before we knew he had PANDAS. At best, it took away his appetite. At worst, he became horribly violent. Don't try to fight this yourself. I'm glad that Dr. B. is helping you, and I also think that that you should get hold of psychiatrists on the forum who treat/know a lot about PANDAS and the use of psychotropic meds. You need all the help you can get from other docs talking to your docs. They listen better. Also, there was a study at Columbia 2 years ago about strep antibodies in mice causing OCD and tics. Get that study and show them THEIR OWN RESEARCH!

I have a small caseload in my practice, and a fairly large number of kids who are suspect for possible PANDAS/PITAND (one is definitely positive, I'm quite certain her siblings are, too, + another whole family as well.) Every child I suspect turns out to have significant family history of psychiatric problems and/or strep issues and/or OCD and/or tics. I don't think this is by chance. I'm not just talking, at this point, about autoimmune illness...I'm talking about a specific infectious trigger.

1) We went there 3 times very excited that someone was going to be able to treat him. Kept having us go back (this was early 2009 after DS(then13) had been hospitalized at CHOP for 4 days with what they thought was ARF. He had already been diagnosed with PANDAS, but the attending at the hospital had told us that PANDAS was "voodoo." So, back to Elia. She was doing a small study using PEX to treat PANDAS. Kept having us come back (driving to center city was 90 minutes roundtrip + parking). Kept telling us how dangerous PEX was, but it was obvious my son was extremely ill. NEVER GAVE US A FINAL RESPONSE, even though I repeatedly tried to get one. Wasted a ton of time. Interestingly, her final report was that he probably had PANDAS, and that SSRI's should be used (forget that...doesn't she read Dr. Murphy?), and that PEX might work (but again, never told us directly, and never gave us further direction.) 2) I tried infectious disease/immunology, and left their office in tears...the doctor was so put off by my crying, that he had the nurse take me and my DS (remember my DS had JUST BEEN HOSPITALIZED THERE WITH 104 FEVER, SCARLETINA, TICS, AND SUSPECTED ARF) into another room, and close the door behind us! 3) There is one ENT there, though, who will do T&A on kids who have hx of strep, even if their tonsils look fine. PM me if you want his name. But, he doesn't treat further (not really his area if you think about it.) 4) I believe there are several docs at CHOP, who, not having the seemingly official stance that CHOP takes on PANDAS, might actually treat it. Several of us on the forum have come close (I found one the other day, who after describing my DS's symptoms (including new tremors), and wanting his neurological symptoms treated, asked if I had ever heard of PANDAS. I was very excited (just like when we first saw Dr. Elia). Upon examination, he actually mentioned about my DS's chorea, tremors, and the fact that he couldn't heel/toe walk (kept losing his balance.) Seems pretty straight forward that there's neurological problems to be treated...right? Well, someone obviously got to him, because a week later, when I called in he suddenly said he couldn't treat "PANDAS" (also said that he was very hesitant to tell me this, but couldn't tell me why he was so hesitant to tell me.) I pointed out that I had not been the one to bring up the diagnosis...he had, and that I wanted the neuro issues treated (my DS is also on seizure meds.) Got nowhere. CHOP neurology official policy (per their department, told directly to me:) All PANDAS cases are seen by behavioral health. (but then we're back to Dr. Elia!) Goes full circle. Wilma, I know you are desperate. I truly wouldn't want you to waste your time, money and effort on doctors who either can't or won't help you like many of us were forced to do before we had this wonderful forum full of information on who WOULD help (my kids have been sick a very long time, and it was only about years ago, that I was able to start getting information to help me find help. And, truly, CHOP's policy is that they won't help on this one. For the record, I have been told by one of the PANDAS specialists mentioned on this forum that Dr. Elia's hands are tied. I believe it.

I think we all need to write up something about our parents/grandparents, etc. I know that Diana Pohlman did something along these lines when she made up a chart about autoimmune illness in families. But, what I'm thinking is that we need to take it one step further. AmySLP is finding evidence of possible PANDAS/PITANDs in her father. I suspect that I might have had it. My Dad, who just passed away from Parkinson's and Dementia was highly suspect (once I found out about PANDAS.) In fact, I had asked him to do a test kit with Cunningham (she wasn't officially testing it, but was going to keep it on file for the future...he ended up not being able to, because he couldn't afford to give extra blood.) In fact, his sister died from probable ARF, and apparently there were 4 generations (that he knows of) of "mental illness" in his family (he suffered from terrible depression that started suddenly when he was 20 years old, and although he was on psych meds...they didn't help much.) As a research scientist all his life, he was terribly thrilled that I may have found the common link to all the psych illnesses, and I also think I may have put to rest that he didn't cause his mother's heart attack, but that based on other symptoms, it may have just been very weak due to possible ARF previously. Some of the PANDAS docs think our kids are going to "grow out" of this (I've been told that,) and I just don't believe it. I think we need to do something along this line. Any ideas how to do it?

Call Dr. Leckman at Yale-New Haven. He specializes in Tourettes, BUT, he's the one who's doing the IVIG trial for PANDAS (he used to not believe, then realized that it does exist.) He's also a psychiatrist. I know someone else who had one of his team members consult with her son's doctor when he was in a psych hospital. I don't know his number off hand, but his name is James Leckman.

If you are dealing with abnormal eeg, have you spoken with a neurologist about seizure meds? Also, you mentioned that she has a sinus infection. What is being done to make sure that is eradicated? Those 2 things can make a world of difference. If you need a PANDAS literate peds. neurologist, you might want to consider getting an appointment with Dr. L. She can be hard to get hold of at times, but she is back to taking new patients, and if you are possibly dealing with seizures, it might help to have both neuro and immuno working for her (many of us see more than one doctor...we are one of those families.) BTW, my DS15 has abnormal brain waves...behaviors have not shown up has causing them, so it doesn't appear to be epilepsy, BUT, the anticonvulscents have helped him.

PD is my fear too, because my dad just passed away from it (PD and dementia.) But, after I found out about PANDAS, I spoke a lot to my dad about it, because he had sudden onset of depression and other symptoms. He grew up without abx, and his sister died from probable ARF. I suspect he may have had it. And, who's to say that Parkinson's doesn't have something to do with this.

Oh Wilma, I so get where you are (been there myself.) My prayers are completely with you.

Will do. I'll ask the pediatrician to test for it. I know we've seen an endocrinologist in the past, and all tests were normal, but things do change. Thanks for the suggestion.

On a side note, I took my DSs to 2 local neurologists (DS18 to an adult one who specializes in movement disorders,) because they both have increased tremors, with my younger one's looking more and more like Parkinson's type. The adult one said she wasn't worried about the tremors, because they were non-functionally limiting, but only after making her opinion (not asked for, mind you) known that she doesn't believe in PANDAS (told us prior to that that yes, she had heard about the "controversary surrounding PANDAS", when my DS18 asked her if she had heard of it.) My response...1) We're here for the movement issues not the PANDAS issue...we have doctors to treat that, and 2) I can give you quite a bit of research to show it very much exists if you'd like (she refused to take it!). BTW...major hospital. DS15 was seen by a local peds neuro who saw his tremors, saw his increased chorea and saw him having difficulty heel/toe walking. When looking at video, he decided it wasn't chorea, because his arm was going in large circles. Couldn't offer me an explanation, but then told me that he didn't know what to do to treat it, because he doesn't treat PANDAS. I pointed out that I didn't bring up the term PANDAS...just described all the symptoms/onset, and told him what treatments have worked/not worked. HE'S the one who brought up the term: "PANDAS." (again...I was just there, because of my concern for the Parkinson's-like tremors.) He got upset, saying that he had been afraid to call me back (I called back after a week of not hearing from him) and in the end, refused to help my son. So...ladies and gents....moral of this story is....we are really and truly on our own. Other than the true angels who are putting their lives out there to help our kids, it truly doesn't matter how mainstream our children's symptoms are...they WON'T BE TREATED AS LONG AS THAT POSSIBILITY OF PANDAS EXISTS! Oh, also, AmySLP, we saw Dr. L. a week ago, and she didn't seem terribly concerned about the tremors, either. I guess there's really nothing that can be done for them, so hopefully when we get our kids' conditions under control, the tremors will go away, too.