Ellen

Your location could not be more ideal. In addition to the Darien office, Dr. Bouboulis has a Stamford office. We live in Connecticut too and see Dr. B. He is excellent. Feel free to pm me if you want to talk. Ellen Hi, we see Dr. Bouboulis. His number is 203-655-9904 Darien, 203-323-7744 Stamford (he has two offices.) How far do you travel? We live in Stamford..I can't believe I stumbled across this name-I was ready to go to Manhattan or even Maryland!! I will definitely contact him tomorrow-I pray that he accepts Anthem BCBS as payment (once it's approved). How long have you been seeing him?

This is good to hear. I am feeling confident now that the combo of the higher dose antibiotics and IVIG is my son's best chance of getting back to baseline.

Yes, this is what I'm saying and it was a surprise to me. My son had been on 250 mg daily zithromax two years ago and it seemed to have no impact at all. After plasmapheresis in October, there was some improvement in OCD and other symptoms. But two months after the plasmapheresis, there was a much better improvement in the OCD and other symptoms once we increased him to a higher dose of Zithro at 500 mg a day. There was a clear and obvious difference in his ability to engage in school work, and his teachers commented on the positive changes they were seeing at school. In spite of these encouraging changes, there are still many issues that are not fully resolved, and so IVIG will be our next step.

My son has had two rounds of plamaspheresis. The first time was in the summer of 2008 through Dr. Elia at CHOP and the second time was in October of 2009 through Dr. Latimer. I strongly agree with what Alex says about the importance of full strength antibiotics before, during, and for an extended period of time after the procedure. We saw partial results both times, and it did seem to be somewhat helpful with OCD, mood, attention, and most of his other issues. If I had to do it over again, I would have had him on full strength rather than just prophylactic antibiotics, and I would have considered following up with IVIG within the first month after the plasmapheresis. Dr. Latimer may be willing, and I think it is worthwhile to have a conversation with her about it. In our case plasmapheresis has been helpful but not a cure and our next step will be monthly IVIG (hopefully starting in February) with Dr. Bouboulis. In my son's case the OCD is not gone, but he complains about it less. I think the plasmapheresis played a role in decreasing the intensity of his OCD and other symptoms, but there was a much more obvious improvement once he got on full strength Zithromax in early December. I just keep wondering if we would have seen even better results if he has been on this dose immediately following the procedure. The hospital staff at Georgetown was very helpful and attentive during my son's entire stay. He liked the docs and nurses very much, and the child life specialist was frequently checking in on him to see if he need anything.. There was one day when she brought a dog into his room and that was a real highlight for him. Also, we were allowed to bring food in for him from outside the hospital, which was very helpful since he is on a gfcf diet. Overall our experience with the hospital was positive, and I appreciated that the doctors and nurses believed in PANDAS and were good about explaining things and addressing our concerns. Best of luck. Ellen

Best of luck and have a great trip!

These are great questions. I am struggling to understand this myself. Does the IVIG trick the immune system in some way so that after shutting down antibody production, it forgets to make bad antibodies but retains memory of how to fight off illness with the good antibodies? We hope to be starting monthly IVIG with Dr. B some time this month, and I want to understand if the dose of 1 gm. per kilo one day per month will work or if we are going to need to build to the higher dose that Dr. K uses. Ellen

My son has a lot of environmental allergies, but I am not comfortable with shots due to the fact that he had bad reactions to vaccines and I believe that allergy shots could have a similar effect. Right now we are keeping it under control with daily Nasonex, a gfcf diet, and many supplements. The ones that he is on that are supposed to be especially helpful for allergies are Pycnogenol and Quercetin and Nettles. Nothing by itself fixes it all but the combination of these supplements and the Nasonex seems to be helping. Ellen

Bronxmom, thanks for sharing this. My son also had plasmapherisis through Dr. Latimer in October, and we are in the process of waiting on insurance approval to begin monthly IVIG with Dr. B. very soon. Do you mind my asking the dose that they used for IVIG? Did they pretreat with Tylenol or Motrin? Glad to hear he is doing better now. Are you seeing any improvements since before IVIG yet? Ellen

For anyone doing special diets, it can be helpful to tag various foods with colored stickers to make it clear which foods are always okay, never okay, and sometimes okay. Red for no, green for yes, and yellow for sometimes has worked very well in our house. Ellen

Yes, the Bethesda Marriott Suites, which is walking distance from Dr. Latimer's office. We stayed there and liked it very much. We got a very good rate too.

Alex, thanks for sharing the details of your son's experience. This is very helpful since we may be following in your footsteps some time soon. My son had plasmapherisis through Dr. Latimer in early October and we saw some improvements in symptoms for a few weeks but some of that was lost after he came down with a stomach virus and fever at the end of October. In November we started to see some very encouraging improvements after slowly increasing his Zithromax from 250 mg three times a week to 500 mg a day. Since then the improvements in focus and attention, especially when doing homework, have been much more obvious and we are gettting very good feedback from his teachers, but there are still remaining issues with OCD and spacing out episodes that I don't think will resolve without IVIG. I am ready to contact Dr. Bouboulis about taking the next step, which I hope will be monthly IVIG. Like your son, my son has low IGA but he also has low IGG, low IGM, and also failed most of the strep pneumoniae titers, and Dr. B does not think getting insurance approval will be a problem. I am glad to hear that you were able to get coverage and things went smoothy. It is interesting that your son tested negative for the penicillin allergy and was able to go on Augmentin. My son broke out into hives all over his body once after being on Amoxicillin when treated for a strep. I have always assumed it was an allergy to Amoxicillin and not a reaction to the strep, but I'm now not sure of that and am wondering if we should ask Dr. B. to test him at some point. How did he test your son for this? So far Zithromax at the current dose seems to be working very well, but it would be good to know if there really is an Amoxicillin allergy going on. Please keep us posted on how your son is doing. Ellen

WornoutMom, welcome to the forum. I am sorry for all that you have been through, and your story hits home for me because there are a lot of similarities with my son, who is now 13 and in the 8th grade. He had a history of tics associated with strep (which he had about once a year) since he was 5 but everything was temporary and mild until he began to have OCD after a strep in the 5th grade. Several months later there was a major worsening of the OCD and many new and severe symptoms after receiving two vaccines just before starting sixth grade. That was when the true nightmare began, and even though the first neurologist we saw thought it was probably PANDAS, we were told that it should be treated the same way as any other type of OCD and Tourettes, which was with psychiatric meds such as SSRIs. He got on Prozac and other psych drugs and this only worsened the symptoms and ultimately led to numerous psychiatric hospitalizations over a six month period of time, causing him to miss months of school during his sixth grade year. He finally became stable at the beginning of 7th grade after he got on a gfcf diet and supplements and had plasma exchange with Dr. Elia at CHOP during the summer. Now, he continues to improve since he had another round of PEX in October with Dr. Latimer and most recently an increase in early December from 250 mg to 500 mg a day of Zithromax. He still has some major focusing issues with homework, but there are some obvious improvements in general mood and his ability to concentrate and think clearly since increasing the antibiotics, and the feedback from his teachers has been very positive. I expect that we will see an even bigger improvement when he starts monthly IVIG, which will hopefully be some time soon. So I think you are definitely not crazy to go down the PANDAS road, and I agree with what the other parents have said about seeing a PANDAS knowledgeable doc, getting him on full strength antibiotics, and possible exploring IVIG or PEX. For my son psychiatric meds just worsened his condition while PANDAS treatments like PEX and full strength antibiotics have helped in a major way. Best of luck and feel free to pm me if you want to talk. Ellen

When my son's PANDAS was at its worst in December of 2007, an MRI was done and it did show evidence of a sinus infection. Ellen

This is interesting. Thanks for sharing this information. Does your father-in-law believe IVIG in combination with high dose antibiotics can "jump start" the immune system so that it can eventually function effectively without requiring the donor IGG? Does he believe that the immune system can create some kind of memory so that these kids don't have to continue IVIG indefinitely throughout their lives to stay well. Ellen

Okay, I haven't had any punch yet, but then again I probably can do this better with a clear head. My opinion on this is that there are some problems with the PANDAS acronym, but now that the disorder is gaining some much needed recognition and attention, it may be better to wait awhile before proposing a name change. Here is my thought. Kids with PANDAS often do have symptoms that make them act like bears but a panda is too cute a bear for this disorder, which we all know is anything but cute. Here is one suggestion: Brain Encephalophathic Autoimmune Response to Strep. The acronym BEARS is not so cute, so that works for me. Ellen

This is a tough one for sure. We have a similar situation but the cousin with strep will be finished with her 10 day course of antibiotics by the time we see her. So I'm okay with seeing them, but I asked my SIL to inform me if anyone else in the family gets strep between now and then. If this becomes the case, I don't think I want to risk setbacks right now even though it will be a huge disappointment to everyone. It was really thoughtful of your SIL to offer putting kids on abx phophalactically. Sounds like she really gets it. Ellen

Dr. T, Thank you for all that you are doing to help our kids. You are clearly going above and beyond and we need more doctors like you. You were very helpful when we met with you last month, and I feel fortunate that we have someone with your level of expertise on my son's case. Best of luck with your practice. Ellen

Does anyone know if there is any antibiotic that does protect against all strains of strep? My son is on Zithromax and allergic to Amoxicillin/Augmentin. If Zith does not protect against all strains to strep, I want to know what my options are if he comes down with a strep infection while on Zith. Ellen

I have posted in other places about my son's PANDAS exacerbation from vaccines, but I want to post on this thread because I feel our story is one that should be heard by any PANDAS parent considering vaccines for their child. My son's PANDAS began in January of 2007 at the age of 10 and 1/2 with OCD. (He did have a history of tics associated with strep prior to that since the age of five but they were mild and temporary.) In late August of 2007 my son had two vaccines (Chicken Pox and Hep A) in one appointment during a time of year when his allergies were acting up. The doc assured me that this was fine. In September of 2007 my son started middle school and was unable to sleep or do homework (before that he had always been a high achieving A student). Within a few weeks of the vaccines, he was pacing constantly, having major tics, facial grimacing and chorea and his OCD became severe. The only symptoms we had seen before the vaccines were OCD and tics. In addition he was having major focusing problems, could not sit still, and would have long zoning out episodes where he would be unresponsive and staring into space for up to five minutes at a time. Eventually he began to have rage episodes and impulsive behavior and things became so extreme that he had to be hospitalized a number of times. This was over two years ago and even though there have been many good improvements due to a variety of treatments, he is still not the same kid he was before the vaccines. Every day I worry that some of this damage will end up being permanent. He does not zone out for long periods of time any more, but he can still be very spacey and I am hoping that by the time he is old enough to drive in a few years, this symptom will be gone. Otherwise he will not be able to drive. So to answer the question about how long did the setback last, I would have to say that it was not just a setback but a severe worsening of symptoms that was devastating and caused what I fear is a permanent change in him. And in our case, I don't believe there were any other contributing factors. I strongly believe that the vaccines did major damage to my son (some but not all of the symptoms are better) and that even though some others are not as sure about the connection in time, in our case the changes started to take place two days after the vaccines. I realize that there are many factors to consider when deciding whether or not to vaccinate a PANDAS child and each case is different. But I only wish I'd read or heard something about the risks at the time so I could have made an informed choice, a NO THANK YOU. I hope that once PANDAS becomes more known to the world, the risks of vaccinating PANDAS children will become known so that other parents can make an informed decision. I did not have that information at the time and I can't change what happened. But for us, the question of vaccines has now become a no brainer. We are done with them for my son forever.

I am very grateful to Lynn, Lauren, and Dr. Trifiletti for what they are doing to get the word out about PANDAS. I do agree that Lauren seems to be handling this very well, and I think Lynn is doing an amazing job of helping Lauren and bringing much needed attention to this disorder at the same time. Dr. T, in my opinion, had a real challenge in trying to explain PANDAS in the limited time he had, but he did a great job and touched on some of the most important points, I think, in the time he was given. Lynn mentioned the need for more research, and I think this comment can go a long way. I am hopeful that there will be additional follow ups and that many more kids (including those currently undiagnosed) will be helped. Thanks again, Lynn, Lauren, and Dr. T! You have my full support and admiration. Ellen

Laura, I completely agree with PatAnne that the Seroquel could be causing these involuntary movements. There is a risk of this becoming permanent with Seroquel, and so this is not something you want to ignore. I think 100 mg is a low dose and if I were you I would work with the doc to slowly wean him off this drug asap. My son was on Seroquel for over a year, and we did not see this, but I spoke with many docs about the risk of td and it is real. I was never comfortable with the risks associated with Seroquel and td and was quite relieved when we successfully weaned our son of this without any problems. Ellen

Buster, I did not get a chance to look everything over that carefully yet, but what I saw looks great. I wanted to mention that when we saw Dr. Trifiletti recently and told him about my son's exacerbation of PANDAS from vaccines, he mentioned that maybe parents need to be advised to proceed with caution when it comes to making decisions about vaccines. What about adding something like this: "There have been reported cases of children with PANDAS whose symptoms worsened following vaccines. Parents are advised to proceed with caution when making decisions about whether or not to vaccinate a child with PANDAS." I know this may be opening a whole can of worms, but if I had seen something like this before vaccinating my son two years ago, I would have not done the vaccines and I know he would be in a much better place right now. I want to give other parents the opportunity that I never had, to be aware that there may be a risk and make an informed decision. I'm fine with putting a definition of OCD on the list. PANDAS actually requires a DSM IV diagnosis of OCD or a diagnosis of tic disorder. Swedo defined the term as being a subset of those two diseases. Let me put those OCD and tics on the list at the top -- and see if that helps. It's in the sentence before. While it is likely that sub clinical OCD symptoms exist in a lot of PANDAS kids, technically, they require a diagnosis. Buster

Mom MD, I remember you said that your son had an allergic reaction to PEX, so in your case, I think it would be especially important to pretreat with Benedryl and mention this to whoever is doing the IVIG. Also, there might be some form of IVIG that he is less likely to react to and if I were you, I would request that. We are most likely going to do monthly IVIG with Dr. Bouboulis starting some time soon, and since my son has low IGA, Dr. B will give a use a low IGA version to reduce the likelihood of a reaction. You may want to call him and get his opinion on the best brand to use for your son. Since he is an allergist/immunologist, he would be a good source of info on that. Ellen

Maybe then PANDAS needs to be viewed as a spectrum disorder with varying levels of severity. It would make sense that the less severe cases would be more to identify as PANDAS. Ellen I completely agree...even though my dd was extreme in Spring 08...for years she had low grade symptoms that I now realize were PANDAS. The urinary frequency at age 4.5 years (with FEVER 2 days later) was definitely PANDAS, but there were also tantrums, some difficult behavior, anxiety, periods of handwashing...that could easily have been written off as "normal childhood phases" or "temperment/personality" or "poor parenting" that were actually likely PANDAS. For most kids, it needs to get extreme for parents to realize that there is a big problem and learn about PANDAS. I think the milder kids are harder to pick and diagnose (so less likely to show up at the psychiatrists/docs or in a study). Also, when PANDAS shows up as irritibility, hyperactivity, defiance, anxiety, I would think these symptoms are more likely to be dismissed as "parenting" or "temperment" issues. Whereas, when it is clear cut OCD (like Saving Sammy) or obvious severe tics...that's more likely to be identified as PANDAS. Mild tics that don't interfere too much with your life, those are also likely to be quickly dismissed by a ped as something "kids get".

Sorry to hear about the setback after the allergy shots. I think you are right in stopping them for good. I agree with BronxMom that it my be helpful to speak with Dr. Bouboulis. My son has many environmental allergies, and we are trying to keep them under control with Nasonex and various supplements suggested by his DAN doctor. When we had our initial consult with Dr. Bouboulis he mentioned the possibility of allergy shots in the future, but he backed off as soon as my husband and I expressed our reservations. I guess because allergy shots are like vaccines in a way and because my son had such a bad exacerbation from vaccines in the past, I was not comfortable with any kind of shot. Dr. Bouboulis totally respects this and he also gets how vaccines can harm children with PANDAS. He is the kind of doc who listens and learns from parents' stories and would not push on if you said your child had a bad reaction to something. I think if you had a conversation with him, he would hear that the allergy shots did worsen your son and might even try to explain that and/or offer possible alternatives you could explore. I am hopeful that IVIG might help with my son's allergies in addition to the PANDAS symptoms. Dr. Bouboulis thinks it will help with PANDAS and immune issues and not necessarily allergies, but I do remember Diana saying her son's allergies cleared up after IVIG. So I think it's possible. Ellen