tpotter

[ I do believe there is a BIG connection between Parkinson's and PANDAS. Yes, I also believe there is a big connection. My son is SO much like my father (first with Asperger's and then with PANDAS.) I've told my Dad this, even before he was diagnosed with Parkinson's. After he was diagnosed, I asked him to give blood for the Cunningham test (it's not standardized for adults, but I felt it would be good for her to have access to it, because the behaviors are so much the same, and my Dad did have sudden onset...albeit when he was 20...I suspect he had it earlier, and his sister died of probably RF. He couldn't give the blood in the end, because he has some other problems, that his doctor doesn't want him to lose any extra blood, but he certainly had depression and terrible OCD over the years. Now, he has Parkinson's. Could it be his age, or could it be untreated PANDAS? Who knows. But, I do believe it is related.

You mentioned gallbladder issues with Augmentin. Our son has been on Augmentin XR for a long time, and has been complaining of having difficulty processing fats. I have suspected the gallbladder, and he even has a bit of discomfort there. He's only 17. I just looked up side effects from Augmentin, and it doesn't mention that. Where did you find out able that?

What about Michael J. Fox? Being that Parkinson's is a disorder of the basal ganglia, and he got it awfully young, one has to wonder.

My 14 yo gets shooting pains everywhere in his body (chest, stomach, back, etc.) They have thrown him to the floor, and he has described them sometimes as feeling like a dagger or a sword was stuck into him. They definitely increase as he is getting worse. We took him to a cardiologist, and ruled out heart problems. He wasn't on Augmentin when they started (although he is now, but they're not as bad now as they were prior to IVIG and PEX last year.) They got completely better after IVIG and PEX last year. That being said, he never had the shortness of breath with it, and I completely agree with Buster that you should immediately see your doctor. It could be heart, it could be asthma, it could be reflux, it could be the Augmentin. Personally, I would definitely want to rule out heart, especially if you have heart disease in the family. If you need the name of a good cardiologist in the area, PM me. He knows about PANDAS, because he's seen both my boys (my 17 year old actually has some heart problems, that we caught purely by chance.)

We saw it overnight (MAJOR calm down from rages). My DS also said he definitely felt different.

I'm sorry...I meant IgG or IgM? Emerson, it sounds like your numbers may be IgG, and that sounds high to me. IgG indicates that you have been exposed to MycoP. IgM means that you have an active infection. In my family's case, I don't know what, exactly my numbers were, but Dr. B. called, and told me that my IgM was elevated, and that meant I actually had MycoP (that would certainly explain my uncontrolled asthma for 3 years, and the fact that the only thing that ever worked for me was Azith...which I probably was never on a high enough dose/long enough to knock it out. My children tested high IgG to MycoP, which means they have been exposed in the past. Dr. K. believes that this could be a cause of some of the rages. I would definitely see what you can do about getting the Immunologist in Dallas (check with LSS about who that is, if you don't already know) and/or maybe see if your mom will bring you to San Antonio, where it sounds like there is a new group on board (they do IVIG and PEX, apparently!) Good luck.

Another Update...I spoke to the insurance company again this morning, and officially started the expedited appeal. I emphasized the fact that I thought it was completely inappropriate that they had used a pediatrician to review an immunological case. The woman asked if Dr. B. had asked to have the peer to peer review with an immunologist, and I told them he wasn't given the option. I also told them that I had filed the complaint with the State Insurance Commission. A little after 4:30 this afternoon, I got a call from someone who had handled my appeal last time (when we were denied through Dr. K.) She was calling me after she was supposed to be gone (I wonder if the Insurance Commission had spoken with them, because they would NEVER do that.) Anyway, she told me she was going to push this through first thing Tuesday morning (faster than an otherwise expedited appeal, which is normally 3 business days), would gather what information she could, and then call me. I told her that I would be tied up in a mediation meeting with the school district, because my child was so sick, that he couldn't even attend public school (I thought that might help a little.) I gave her Dr. B's insurance person's name and phone number. Keep us in your prayers...I guess we now have 2 biggies on Tuesday! I'm spending the weekend writing up what I'm going to say at the mediation meeting, and organizing all our papers (mostly the 4 letters of support from doctors.) The school district is pulling out all the stops, and our pediatrician already told their doctor that if they keep pushing this, they're going to make it worse (our school district revels in not listening to anyone, including doctors.) So, we'll see. Have a good and restful weekend everyone.

I just read your post to my boys (14 and 17), and they laughed. He saw my now 17 yo (was 15) with long hair, and said: "Hi Louise!" My son, who also has Asperger's whispered to me: "does he think I'm a girl?" He just laughed tonight, and said, "he wouldn't call me Louise today...I still have the long hair, but my face is covered too!" Yes, he has a very dry sense of humor, but he is so incredibly wonderful, warm, really cares about the kids, and most of all, really "gets" PANDAS.

Totally agree with the others. I am a pediatric OT, and treat very young children. I suspect 5 of my kids as possibly having it. One I described to Dr. C., and she told me to give them her information to them...it sounded like PANDAS to her (child was born with it.) A set of twins and their sister also appeared to possibly have it, and then when the twins got strep in April, couldn't shake it, and one started having terrible separation anxiety right afterwards, I got mom to speak with the pediatrician about making certain they took abx long enough. Today, I went out and saw them after having a week off for vacation, and that child was having terrible separation anxiety again. When I asked if she was getting sick, mom told me she was hospitalized last week. I wrote a letter to the pediatrician, told her my observations and suspicions (the little girl was having a lot of other symptoms today, too, told her about the NIMH statement a few weeks ago, the upcoming trial, the white paper coming out, and suggested that for further information she could call Dr. K (and gave his phone number). I hoped he wouldn't mind my suggesting him, but I figured that would be a good resource for her. I have also given several other families information. I really don't have an "abnormal" caseload that I would see so many kids with possible PANDAS. I just think that in the past, no one knew what it was. I treat another child who pulls her hair out and eats everything (including non-edible objects.) I have seen in the literature where that can be associated with strep, and her mother does the same (diagnosed with psychiatric illness. I have armed her mother with research articles about the correlation, so she can bring it to the neurologist she will be seeing in October (I know the neurologist, and know he is totally into research...he also does recognize PANDAS.) I totally believe that what we are now finding out and identifying as PANDAS and/or strep or infection related is going to blow the lid off of all kinds of previous diagnoses, such as Autism, Tourettes, OCD, ODD, bipolar, etc., etc. I can't diagnose or treat, but I can certainly give people the information they need to find out if it is infection related. My kids laughingly tell me that I think EVERYONE has it (I have told them that I don't think everyone has it...just a lot :-)

Are they IgG or IgE? That makes a difference. Also, I know you said you haven't had any tx with abx yet. Did you know that there is an immunologist in Dallas who treats with IVIG. I would think he would also tx with abx.

Thanks everyone. You are all the greatest.

UPDATE...Dr. B. spoke with their "peer reviewer" (still the pediatrician), who told him it was still denied, because they have a co-dx of PANDAS. Dr. B. repeatedly told the guy that he's not treating the PANDAS, but the fact that their blood tests show that they can't find strep and other infections, and that this is an acceptable use of IVIG. A pediatrician actually reviewed for an immunologist! Can you believe it? Still denied. I immediately called BCBS, and told them to file an expedited appeal (it's now too late to do it next week, when the boys would have been off of school, anyway, because schools are closed here for Rosh Hashana!) I also left a message stating that I was reporting them to the State Insurance Commission, and that it is apparent that they are trying to kill my children. It's pretty apparent that no matter what they are diagnosed with (could be cancer), they would still be denied tx, because they have a co-dx of PANDAS! I already filed the complaint with the State Insurance Commission, but I know they don't get on it that fast. BTW, I did check with Dr. B's office, because I was going to pay out of pocket. My boys are over 6 feet tall, so you can just imagine their weight. Total cost was over $30K! There's no way I have that much money. I'll keep the infusion center in mind, but I don't know who would prescribe it is the problem (I will not use Dr. T, and I understand he's typically the one to call.) It looks like it will be at least next week before I have an answer. If they deny it, I really don't know what I'll do. This so doesn't make sense.

No Blue Cross Personal Choice, which is supposedly one of the "premium" policies!

Melatonin actually made my guys worse...horrible dreams. I found that 5-HTP in large doses (4 pills for my DS17 and 3 for my DS14) before bed + sometimes either a glass of warm milk, or a handful of peanuts (both with tryptophan) worked much better.

Thanks everyone. Sitting here unable to sleep, and just numb. We already went the lawyer route with the school district, and although we settled after a very protracted and negative Due Process case (3 years, and my son is now scarred for life, and the district is starting it all over again), lawyers are insanely expensive, and frequently really aren't worth the money (it was marginal whether or not we really benefitted from going to Due Process, because in the end, we lost so much money from paying private school tuition + lawyer's fees, and only got a portion back. Unfortunately, I have to try to get all this worked out today, between clients, while trying to focus on my work (I've already taken off extensive numbers of days), and Dr. B's office is not open tomorrow (Monday is a holiday on top of that, and we have a mediation meeting with the school district on Tuesday.) The boys were supposed to get IVIG on Wed/Thurs (school is closed on Thurs/Fri, so they would have missed minimal school, but as far as I know Tues/Wed were given to other kids who's insurance was already approved. I'm fighting 2 major battles simultaneously, and have been for 3 years. Even when I take off of work (I had quite a few cancellations the past 3 days, so I had time to deal with this), I was powerless to make things change. I've been horribly asthmatic, Dr. B. found that I had MycoP (high IgE), after multiple immunologists couldn't find anything wrong with me,) and I can't even take care of myself properly, because all I'm ever doing is fighting a system that I just can't seem to get past. It so doesn't make sense. It took so long to get a dx for my kids, then almost as long to find doctors who could/would tx, and now...once again...can't get the tx without paying through the nose, because insurance is h...bent on screwing things up.

Oops...I meant LSS (instead of LLM...sorry ladies, but in other words, thank goodness for the never ending help of people on this forum!)

Got a dx from Dr. B, and the insurance company is h***bent on destroying my kids' lives. My DS 14 was approved for PEX last March (at Gtown), and things fell through with no fault of ours or his a few days before he was scheduled to get the PEX. Then the nightmare started. We couldn't wait any longer, and decided to do IVIG through Dr. K. As you know, that was denied with 2 appeals. We then went to Dr. B at the beginning of August, and MycoP IgG came back high, + C3D came back 32 for DS 17 and 84 for DS14 (Dr. B. said that was about the highest he'd ever seen.) He ordered more tests after we left on vacation, and thanks to LLM, I was able to get a fax sent to her from Dr. B, and she was able to scan it, and email it to me, while I was on my cellphone for 2 hours of the drive from PA to NC trying to find a lab near my dad's house to get the blood work done before we left on a much needed cruise (I finally arranged to get it done at Duke University Hospital outpatient.) While out of the country, we got a voicemail from Dr. B's office saying that insurance was approved, and we were scheduled (for next week.) We were in Key West that Wed, and I called in to his office, and was told that everything was fine. When we got back on Friday, I was in for the surprise of my life. There was a voice mail from Dr. B's office (they're not open on Fridays), and it said that insurance had called back, and said they made a mistake, and there actually was no approval (the original one was that we didn't need approval, because it was in an office setting.) I called first thing Monday morning, and Dr. B's nurse told me the same thing. Then I got hold of the insurance person, and she hadn't heard, but was very confused, but she had an approval number, and all. Well, not only did we need approval, but because it was being done in the state of CT, our insurance was saying that we also needed an external review from someone in CT! Meantime, Dr. B's office needed to bump us from our spots, which would have been during scheduled vacations from school, so my boys wouldn't have to miss more than 1 day of school, which is really significant right now for my 12th grader. I've been on the phone for hours with insurance since Monday, trying to find out what is going on, getting it approved, etc. They actually gave it to a PEDIATRICIAN for external review of an immunological dx (not a PANDAS dx) made by a board certified immunologist! As soon as I heard that, I questioned them immediately, and asked how that could be. I knew immediately what they were up to, but I was powerless at that point. They decided it was "NOT MEDICALLY NECESSARY!" (the denial through Dr. K was that it "was experimental.") OMG. I was beyond angry. Started cursing on the phone with the insurance person (never done that before, but boy did it feel good. ) Told them it was complete bull..., and that I was "so going to report them to the state insurance commission." I hung up and started balling, then called my husband, and said I'd sell my soul, but we're finding the money for 2 kid, because there's no way I'm waiting any longer. I called Dr. B's office, but they're really busy, and I guess I'll hear back in the morning (I'll call again.) I left a message saying I'm paying out of pocket while we fight this, and let's get it scheduled. I so don't have any more fight in me. I'm so overwhelmed. We've had this stuff going on for so many years, and between the insurance company (we actually have the premium plan if you can believe that), and the school stuff that won't end with my DS14, I actually really felt myself losing it today. I just got back from a nice relaxing vacation, and now I'm going off the deep end. Even more, I have been completely unable to schedule my own work for next week or the week after, and my client's are suffering.

Stress is a huge problem, as all the PANDAS experts will tell you. And school is probably one of the worst. If homework, and school work causes a lot of stress for her, I would go to the school, and ask them to either evaluate for an IEP or ask them for a 504 plan. This will allow her to not do some of the homework or school work, get out of classes if necessary, not worry if she has to miss school because of extended illness, etc. It is important to decrease some of that work, because as bad as it is on us at home, it's even worse for our poor kids.

Ditto. We also have been working with Dr. L. over the past 1 1/2 years, and will continue to do so. I also wouldn't give up on PEX if it is an option. But, as many of you know from my posts, we had everything fall apart repeatedly since March, and I finally started doing the route you are doing...making an appointment with everyone to find someone who could finally get it through. Dr. B. is a great choice, because yes, he is extremely thorough. How many times did I go to local immunologist/allergists for both my boys and myself (I have had uncontrolled asthma for 3 years, and kept telling them that azith was the only thing that would stop it, besides prednisone giving me relief.) Dr. B. not only found that my boys had been exposed to mycoP (high IgG), and their C3D was through the roof (32 and 84), but I was apparently, at least the partial cause of their mycoP exposure (high IgE!) When he called to tell me, my response was: "Well, that could certainly explain my asthma, and why azith was the only thing that worked." He laughed, and agreed. I have now made an appointment with him for next week for my DH who has terrible RA..uncontrolled for 4 years, and I bet he finds the reason (I suspect there may be an RF connection.) Dr. B. does go the Igenex testing route, but I don't think he is a LLMD (although my understanding is that he can make recommendations.) We have decided not to do the Igenex testing (even after we got the blood drawn) at this time, because we just can't afford it at the moment, and Dr. B. agreed that for now we should do IVIG (after he found other sources of infection, I figured let's rule this out piece by piece, because there can be false negatives and positives.) But, I do agree with you about staying with Dr. L, I would recommend going to Dr. B. also, because he is so very thorough, and I don't think you'd be disappointed, and keep the appointment with the LLMD. You can always cancel. Good luck.

I completely understand where you are coming from, because prior to finding this forum, I was very much in the same boat (even though we had found a PANDAS specialist, he was not "there" for us, and my son went extended periods without tx.) Locally, we had the same problem finding a doctor willing to at least do the basics, and of course, we didn't even know at the time what the basics were, but we knew we desperately needed help. 1) Have you looked on the list at the beginning of this forum for doctors. You might find a pediatrician or someone in your area who can help. Where are you from? Maybe another parent can give you a lead. 2) I would call 1 pediatrician after the next in your area, tell them your situation, and ask them if they would be willing to follow the recommendations of a PANDAS specialist and/or would they like to learn even more. In which case, you could send them all the information you have (I have a bunch of information for doctors grouped together in my email to send them when necessary (studies, names of doctors treating, etc.) I think it would help tremendously if you brought that literature with you, and also brought up the recent meeting at NIH with all the doctors (both PANDAS believers and non-believers.) 3) I would also be very careful about getting meds online. You don't really know for sure what's in them. 4) SSRI's have been shown to sometimes cause worse problems in PANDAS kids. If the child truly has PANDAS, they don't tend to respond to SSRI's like non-PANDAS kids with the same OCD, ADD, etc. My son became extremely violent on them. Read Dr. Tanya Murphy's article. Good luck.

We are in the same boat. XR was covered, but now there is a generic, and you should probably look into it. But, on the other hand, you can ask for an exemption of necessary. We did that with Lamictal (name brand), because my son is being treated for seizures. We, unfortunately had to try a trial of the generic first (which is not recommended with seizures, because you stay on whatever you started on if it's working...whether generic or name.) He had a reaction almost immediately, and then they approved him forever.

What do they mean..."Let alone a 504 plan?" That's the most absurd statement I've ever heard (well maybe not the MOST absurd, considering I've been fighting our school district for 3 years, and have a mediation meeting next week, while my son refuses to return to school :-0. Anyway, just a quick explanation of the 2: 1) IEP is an Individual Education Plan, which means that he qualifies for special education under one of 7 different qualifiers (your son would probably Other Health Impaired or OHI, and/or Emotional Disturbance (ED), but I would highly recommend you get at least a primary qualification as OHI.) Your child should get a complete special education evaluation in all areas, and what really concerns me are those low grades in writing and reading, particularly if they dropped. It also indicates that the child's functional level is decreasing, and that the medical dx is causing him to not be able to learn up to his level...which is why he MUST be tested completely...and not just for Learning Disabilitiy, which most of these kids don't have.) 2) A 504 is where the child doesn't qualify for special education, but the school itself recognizes that he is struggling (for whatever reason, such as handwriting, reading, math...whatever), and puts a compensatory plan in place. It is a WRITTEN plan, and also covers you legally if they aren't doing what they have agreed to do (which is why our school district fought our 504 plan that we arrived with 3 years ago, and why are now in and out of legal battles with them, because his grades dropped to F's, and he got horrendously ill.) Most school districts will jump at a 504 plan, because they are relatively easy to incorporate, and both a 504 and IEP can be modified whenever necessary. So, my recommendation, send them a letter immediately (which starts the legal countdown to when it has to be determined by), and tell them you want your child evaluated for an IEP (don't mention the 504 plan yet, because that comes later, if he doesn't qualify for the IEP). Tell them you want a complete evaluation (cover learning and ED, because these children have a lot of anxiety and stress, and this contributes to their disability.) If you aren't getting anywhere, I would definitely consider getting an advocate to come with you. You should be able to get a list of qualified advocates (not lawyers) from your state department of education. PM me if you have any questions. Hopefully your battle won't be as bad as ours, but honestly, I've never seen anything like ours, and I've worked in school districts for many, many years. So, I suspect with knowledge, you should probably be fine (unless of course you live in my school district, and if that's the case, let's just join forces, and go after them together :-)!!!! Seriously, though...good luck.

Wow. I'm am SOOOO impressed with your school. Why can't my school do that, even after 3 years of Due Process that finally resulted in a settlement agreement, and now they're starting it all over again!!! I am really, really happy for you (even if I am a bit jealous!)

Melanie, Weren'nt you going to see Dr. B? If he finds things (which he apparently did with my kids...I was on vacation this week, and I just got a message saying that IVIG is approved, so that must mean that something came back positive...yeah!), you can go to high dose. Maybe it's really time to think about strategy instead of abandonment. CT isn't too far, and it may be time to say...I've tried Dr. J's approach, and now it's time to try another. Just a thought. Good luck. 10 is a huge amount, and I don't blame you in the least for being so tired and frustrated. Just a little aside, in response to another post. We went on a vacation this week..a cruise (hallelujah!) My 14 yo said it wasn't as great as last year, and the 17 yo said it wasn't good at all (holed himself up in the room, because there weren't many activities for him this year, for some reason.) As they were complaining on the way home, I chimed in with..."But, I finally got a chance to relax, and doesn't that make for a great vacation...you're mom isn't completely stressed!" My 14 yo responded, "yeah...I see what you mean...you haven't yelled at us in a week!" My suggestion...take a few minutes for yourself, and also consider looking at HD IVIG. Good luck.

Yes, my dd14 has definitely had that over the years. In fact, he's had some incredible major shocks with it, and it doesn't just get him in the chest (it actually feels like it's in his heart, and just about everywhere else over his body.) They've gotten so bad at times, that he has actually flown across the room with one, and with others, he's described them as feeling like a knife or even a sword is going through his chest/body. Now, the bad part. I have no idea what it is. We also got an assortment of not concerns, but we also had his heart checked (luckily it's not his heart.) He does have abnormal brain waves, and is being treated for seizures, although these did not show up on the eeg when he had the shocks (in other words, they could be myoclonal seizures, but in my son's case, probably isn't.) Because it could be the heart, I would suggest having a consult with a pediatric cardiologist, as I wouldn't want to miss something possibly important. That being said, more than likely you're going to find that it's part of the PANDAS process (they actually got better after the first round of IVIG last year, came back, then went away for about 6 months after PEX,) so I really do suspect it is related to the PANDAS. But, again, I don't think it hurts to be prudent, and make certain it's not cardiac. Good luck, and let me know what you find out.