NancyD

Do WHATEVER you can to minimize stress during the healing process as stress only makes the symptoms worse. This may mean eliminating homework and chores and loosening up on expectations. And as everyone says, things WILL get better! Laura, I'm so glad to hear that DS is much better now. YEAH!! Nancy

You may want to determine if the individual had a low-dose infusion (less than 1.5g/kg) or a high-dose infusion (1.5g/kg or higher) because that could change your recovery time and results dramatically. Also, what was the period in between infusions (e.g., 21 days, 28 days, 2 months, 3 months, 6 months, etc.). This too could alter the recovery time and results. Nancy

Hi Melanie, Haven't you been doing low-dose infusions (i.e., 1g/kg or less) all along? We were in a similar position. Although we started at 1.5g/kg with the first infusion in 2008 we were doing anywhere from .5g/kg to 1g/kg every 28 days. The first year was great and I believe it was because of the initial high-dose infusion. But then I noticed a bit of regression during the 3rd week after each infusion. We even tried pushing up the infusion to 21 days. Finally last March I convinced the doctor to try another high-dose infusion at 1.5g/kg and wait at least 3 months to let the antibodies settle before trying another infusion. Although the recovery time on the high-dose infusion is so much longer (2 1/2 months for my daughter), the results are SO MUCH better!!! It has been 5 1/2 months since our last infusion and if we don't do pheresis in Oct as we had hoped we will do another high-dose infusion to get us through the winter. In hindsight, I wish we had only done a single high-dose infusion and then stopped. Isn't there anyway you can convince your doctor to try one infusion (1.5g/kg to 2g/kg) and then stop for a few months to let the antibodies settle? Nancy

Another parent I know called his office a few weeks ago and it was November at the very earliest back then. So use that to your advantage. I have an appointment in 4 weeks with him. I will be calling Dr. Fuhlbrigge tomorrow. If he is really booked that far out, then perhaps I can really use that to my advantage for the insurance. I will be calling them and pushing for that. I appreciate the input!

Best to PM me. We saw him for ~2 years.

I have Harvard Pilgrim PPO. I just checked online and Bouboulis is listed under the PPO plan but not HMO. You need to contact a nurse care manager and explain that you need an IMMUNOLOGIST with expertise in PANDAS/PITANDS/SC and who is taking on new patients and can see your child within the next month (or whatever time frame Dr. B can see you). TePas is great to work with but she is no longer taking on any more PANDAS patients and I don't know any other immunologists in MA who have expertise with PANDAS. I have been able to obtain approval in the past to see doctors outside the network but at in-network rates. And I have found HPHC pretty decent to work with. Keep in mind though, HPHC stopped covering IVIg for PANDAS in Feb so you need to use another code. Good luck finding a local doctor who knows PANDAS and is willing to see you soon. Fuhlbrigge (a rheumatologist) is booked out until November or December. Unless your child has high titers he won't diagnose PANDAS. Geller (psychiatrist) is not taking on any patients at MGH, but he is taking patients in his private practice. Initial diagnostic interview is $500 and then $1500 a few weeks later to meet with him. If you join his study they waive the $500 diagnostic interview, but not the $1500 fee. I would definitely try to find a way to see Dr. B! Nancy

Thank you , EVERYONE, for all your great posts,PMs, and words of support! At least now DD and I can joke about what happened. She wants to go there next month and say "I'm b-a-a-a-c-k!" Like T.Mom suggested and others supported, I emailed Dr. L recapping what happened. She was fully aware and she is trying to work out a solution. I did ask for guidance as to whether or not to send a letter to the hospital. I have no problem letting it go, but I would like for this not to happen to any other family. I do not in any way want to compromise her or future pheresis for my DD or your children. I understand why they have to be so careful but the psychiatrist was inapporpriate and the conflicting information could have been prevented. For any child with ASD or PANDAS, the child needs understanding and compassion, consistency, accurate answers to questions, expectations to be set, and time to adjust to the rules. Hopefully we will be able to try again next month if they are willing to work with us. If not, we may have to do another round of IVIg. IVIg has always helped with everything but the anxiety/OCD. I was hoping the pheresis would reduce or eliminate the anxiety, which I think is at the crux of everything else. Onward... Nancy

Michael, I did not speak directly with Dr. L. Just with Andrea who works for her. RNmom,were you there this week? Andrea said I would not have to deal with him again. I hope this is true. In fact, she encouraged me to write a letter before leaving DC. Was your son inclined enough to be able to read or be on a computer or was he lying flat on his back? Was he allowed to get up and pee before/after the pheresis. They told me she would have to use a bed pan during the entire stay. This, I believe, is wrong too. I could go on and on with the many discrepancies...

Thank you everyone! Gatito said it best..."If they only knew how difficult it is in the first place to get our children to these appointments." Yes Melanie, the plasmapheresis is through Dr. L, but this is absolutely no reflection on her, her staff, or the plasmapheresis staff. Dr. L and her staff are FABULOUS and they go above and beyond! And from what I have heard the pheresis staff is fantastic too. Unfortunately we never had an opportunity to interact with the pheresis staff. I asked many times to speak with a pheresis nurse but they kept putting me off. I can understand that they were being VERY cautious since they had an older male patient recently rip out the line and I can understand that they would have us see a psychiatrist. BUT...like Philamom suggests, this psychiatrist was a real "*@^#!!"...and like gatito said, "if he was concerned regarding his safety he should have had security out in the hall and could have called him if necessary." At one point this psychiatrist said to me, "Did you know that Dr. L is considered to be the most aggressive doctor who treats PANDAS?" I ALMOST said, "NO ######, THAT'S WHY I'M HERE!" But I bit my tongue. Vickie, I too was secretly applauding DD for telling him off, although I knew she was destroying any chance of ever turning this around. Oy, you should have seen how she told him off! This psychiatrist, who shall remain nameless (PM me if you want to know his name), tried "shrinking" me (as if out of a movie script). He looks up, he looks down, he struggles to get the proper words out..." This must be R-E-A-L-L-Y D-I-F-F-I-C-U-L-T for you to deal with" or something like that. I wasn't sure if he was looking for me to cry, break down, or jump down his throat, but I just smiled and said, "I have a good support system and I do what I have to do for my daughter." What I really wanted to say was, "only when *@^#!* like you stand in the way of parents like me who are trying to help their children." Then this psychiatrist asked me what I did for a living. I told him I run a non-profit and train doctors how to screen children for ASD. He wanted to know what ASD was! Then he quizzed me on whether I had a PhD or Masters. IS THIS REALLY GERMANE TO THE SITUATION AT HAND?!! I definitely want to file a complaint with the head of the hospital, HOWEVER, I do not want to compromise DD's chances (or those of any other children) of getting plasmapheresis in the future. On the other hand, this is the first time this psychiatrist has seen any PANDAS patients. And, if he is going to see many more PANDAS patients down the road (as I know he will), the hospital needs to know that his approach is inappropriate and unacceptable. The anguish and emotional distress that he caused, not to mention the financial loss, could have been avoided completely if he had handled this in a more professional and compassionate manner. This was like psychiatry out of the early 1900s!!! SO, WHAT DO YOU THINK...SHOULD I SEND A LETTER NOW OR NOT? Nancy

We were SO CLOSE... DD14 threw a nutsy during the hematology/oncology consult one day before being admitted because what they told her about the procedure was contradictory to what she had heard and she couldn't handle it. She was completely fine with having the line put in and dealing with any pain associated with it.. And she was completely fine with not being able to move around for days. All she asked was to not have the blood pressure cuff on all the time (she was fine having her blood pressure taken as often as they wanted and having to wear the cuff if her pressure went too high or too low) and to be inclined enough during the pheresis so she could read or be on her computer (hematology/oncology told her she would have to lie flat on her back). They told us they were going to postpone the procedure by a day and that she would have to meet with a psychiatrist the next morning who would determine if she was capable of having the procedure or if she was at risk for pulling out the line. She told them she would not meet with a psychiatrist but I convinced her that if she wanted the procedure she would have to. The next day she was perfectly calm and ready to turn things around. We waited almost an hour for the psychiatrist to arrive. He came complete with a police escort out of fear that DD would become aggressive with him. He had the policeman walk right in front of her twice to try and scare her (it did not). Actually, the only thing he had to fear was her foul mouth (and she did tell him off!). He was one of the strangest psychiatrists I have ever met (I think he was a descendent of Bruno Bettelheim!) and he knew very little about PANDAS. Also did not know what ASD meant. I tried to explain that it was just her heightened anxiety from the PANDAS and once they admitted her she would be fine and that she would be too scared to pull out the line. He interviewed both of us together and separately and laid down rules that neither of us could interrupt. Yet, every question he asked he kept interrupting us and tried to twist what we were saying. It was almost like it came right from a movie script. He admitted to me that he pushed DD's buttons on purpose, which only antagonized her more. At the end they told us to go back to the hotel and wait while they made their decision. We waited and waited and waited... NO ONE EVER CALLED... Finally, 24 hours later, we found out they would not take her. So we flew back home minus $1200+ for airfare, food, and hotel! Turns out, the head of the pheresis dep't was away on vacation. Supposedly this NEVER would have happened had he been there. Call us crazy, but we're going to try again in October. I have waited 5+ years to do this!! I hope no one here ever has to go through this!

DD's vitamin D levels have also been consistently low. In fact, in April Dr. L said her levels were catastrophically low (4 or 5) and she put her on 50,000 IU pill once weekly). We just checked levels again and for the first time they are in normal range. Just switched her back to 1,000 IUs daily. Nancy

We waited over three years for this moment. Can't believe it's finally happening. Bless Dr. L and her staff!!! Still smiling, Nancy

Steroids will definitely skew results of CaM Kinase test. I called Kathy asking her this question in April. Nancy

This is GREAT news and very exciting. Thank you, Kelly and Vickie, for all your hard work on behalf of our children and families!! Nancy

Requirements can vary from state to state. You can check guidelines with your state Department of Health & Human Services. Nancy

Hi Vickie, This is such a personal decision, so I can only answer based on the information you provided and what I would do if I were in your shoes. Given the fact that there is a history of PANDAS in your family and your DD has had strep (even without getting PANDAS symptoms), I would err on the side of caution. I would definitely get her titers done. You may be having angst over nothing if her titers are high enough. I have checked my DD's titers ever since she was 5 and she has not needed one vaccination since. If, however, she is not immune, then I would look at each vaccination individually. What is the risk of her getting each disease? Can you get the immunization broken out if it is a combined immunization? Certainly space them out and make sure your DD is in perfect health if you do administer any vaccinations. Ken Bock is my DD's primary doctor and he is very wise in what he says in his book. Nancy

Prophylactic just means preventive measure.

Emily, There are many published studies that show overproduction or underproduction of dopamine can cause neuropsychiatric disorders and chronic diseases. Risperdal is a dopamine antagonist (meaning it blocks dopamine receptors). I believe it works on D2 receptors (anyone, please correct me if I am wrong). If your daughter has high dopamine levels definitely stay away from SSRIs as they can cause manic episodes. But, as you know, Risperdal and the other psychotropics are just bandaids. Sometimes you need a bandaid while you search for more long-term solutions. It took us nearly 10 years to find a better solution. I never thought we would be able to get my daughter off Risperdal but we did over a year ago -- about six months after starting IVIg. Have you considered doing IVIg? Also, as stress can increase dopamine and overproduction of dopamine can cause heightened anxiety, this becomes a vicious cycle. I try to minimize the level of stress in my daughter's life as best I can. And, as indicated in previous posts, I eliminate all dyes and additives (particularly red and blue dyes)from my daughter's diet and stick with as much organic food as possible. All cleaning products are also organic. My guess is that dyes and additives (as well as toxins in the environment) may cross the BBB and cause dopamine levels to increase. Nancy

Wendy, Thanks so much for clarifying (re Igenex and Bartonella). Everything I read was specific to "cat scratch disease". We're 19 weeks post IVIg. I think I will go ahead and order this test and do it next month when we draw for liver function. We're also hoping to do plasmapheresis later this summer (followed by IVIg 28 days later) if we can get insurance approval -- perhaps that will help anxiety. Nancy

DD14 has been on daily Abx for 7 years. PenVK and Omniceff worked for the first few years and then stopped. Tried Zith and Amox but yeast was a problem. Since last exacerbation in April DD has been on Augmentin XR and that seems to be working well (w-IVIg and Diflucan). Nancy

Wendy, is Igenex more reliable than other tests for Bartonella? From what I have read, "Diagnosis should be confirmed with demonstration of a 4-fold rise in antibody levels, initially immunoglobulin M (IgM) followed by immunoglobulin G (IgG)." But IVIg would alter the levels. Nancy

This is really AWESOME, peglem! If you haven't already read this book you may be interested: Replays: Using Play to Enhance Emotional and Behavioral Development for Children with Autism Spectrum Disorders By Karen Levine and Naomi Chedd Karen is one of my daughter's clinicians and Replays has worked well with DD's fears. From what you have described it could work well with Allie's fear over elevators. It is a developmental (and not behavioral) approach. Nancy

My daughter's D2 levels were also 16,000 and that was after doing IVIg for over a year. She was in remission at the time and not having any rages. I shudder to think what her levels would have been w/o IVIg. For years I have known her dopamine levels were elevated -- long before she was diagnosed with PANDAS. That is why Risperdal was the only psychotropic med to work and why SSRIs made her worse. I am also wondering if dyes (red and blue) can possibly affect dopamine levels, as she will rage after ingesting anything with dye in it. Nancy

My daughter is 14 and because of her violent rages I was so afraid to try a steroid burst. I was told by a few doctors that it could easily make the rages worse. So I waited until she was hospitalized in a "controlled environment" (NOT!) to try it. That was 11 years after her initial onset of symptoms, which included rages. Boy do I wish I had tried a steroid burst all these years! We did a 30-day tapered dose (starting with 30 mg bid) and after two weeks she was back in remission. Colleenrn, I am hyper ventilating thinking that you have 4 children with PANDAS! I am hoping the burst helps your daughter! Nancy

Anxiety seems to be the last to go for us. So far IVIg has not been able to touch it. I'm hoping plasmapheresis will. I'm sure every child reacts differently to each treatment. For us, tics were the first to disappear (and they were really bad), whereas many say tics are the last to go. Nancy