Ellen

Worried Dad, Everything you say about needing unity makes sense, and I agree that it might be best to try to work with Beth and try to persuade her to be open to learning about the latest and most up to date info on PANDAS. I know that she has been a big help to you in your treatment of your son. Have you considered writing to her to thank her and update her on him but also include some of this other info on the titers, the latest therapies, and the Cunningham test? I am really happy that Saving Sammy is out there and it has helped many people. I am glad that high dose Augmentin has been working well for so many people. This is something I wish we could have tried for my son but he is allergic to it. If Beth's son had this allergy, she might have had to go down another path as we have. So the approach of just prescribing high dose Augumentin is great for those who can take it. Others like my son do not have that option, and so I think the PANDAS Foundation has a responsibility to make people aware of other antibiotics such as zithromax and other treatments such as IVIG and PEX. I hope that as the spokesperson, she will not shy away from communicating this information. My opinion is we need to keep trying to inform and communicate with her and others in the foundation. Ellen

Bronxmom, I'm sure you are glad to have this overwith. I agree with what Alex says about trying to avoid any immune system challenges post PEX if possible. My son was there in early October and we saw only very minor improvements the first week after we were back, but since then my husband and I have been seeing more positive changes that are becoming a bit more obvious day by day. It was nothing fast and dramatic, but I'll take slow and steady as long as things are moving in the right direction. I cracked up reading what you said about Georgetown "being in an alternative universe where everyone believes in PANDAS." This was how it was when we were there too, and it kind of took me by surprise. It was a nice feeling to know that the docs and nurses did believe that my son's PANDAS was real, that there was a true medical cause for what's been going on with him. Hopefully, some day this attitude of not doubting PANDAS will become much more widespread in the medical community. Last week someone from the hospital called to survey me about our experiences there, and I had only great things to say about all the staff there. Best of luck and keep us posted. Ellen

We first considered IVIG back in April of 2008, but we were getting mixed opinions from doctors about the safety of IVIG for people with low IGA, and at the time nobody told us that it could be done without IGA. He was also 12 at the time and his case was extreme so we thought that PEX was a better option. He actually has had PEX twice. The first time was with Dr. Elia at Children's Hospital of Philadelphia in the summer of 2008. It was done through a peripheral line, and we had to stop after it was onlly 70 percent completed because of problems with his veins. We saw some very good improvements after this, but it took a couple of months before they became obvious. Also, because he still had some major OCD and focusing issues, we decided to see Dr. Latimer in August of this year, and she told us that PEX would probably be a lot more efficient and effective if it is done through a central line. She also suggested we see an immunologist to test for the Selective IGA deficiency, so we saw Dr. Bouboulis after that and that is when he did the testing and told us about the option of giving IVIG without IGA. Because of his age (13) and the fact that PANDAS has been going on for so long with him (almost 3 years), we decided to do PEX in Georgetown first and possibly follow up with monthly IVIG to address the immune deficiencies. So far, three weeks after PEX, we are seeing some positive changes but nothing dramatic yet. One very encouraging sign is that he seems to be much quicker to respond to questions and directions, and this is great to see because on of his biggest problems is spacing out episodes. I hope I have more good news to report soon. Ellen

Mom MD, I am really happy to hear that your son responded well to the steroids after his relapse. Keep us posted on what happens with IVIG. Ellen

Paula, I agree with P. Mom to go by the clinical symptoms. Your son's results may be lower because he was not in an exacerbation when the test was done. I looked at one of your older posts and you had a question about low IGA and IVIG. This has been an issue for us as well because my son has low IGA in addition to low IGG, low IGM and other immune deficiencies. He had PEX at Georgetown a few weeks ago, and if we do not see enough improvements in the next few months, we are considering following with monthy IVIG with Dr. Denis Bouboulis, our immunologist in Connecticut. You may want to talk to him. He is very helpful and good about returning phone calls. If your son's IGA is low, an immunologist can do a test to fractionate that number into two numbers, IGA1 and IGA2. If either of those numbers is too low, then it is considered to be a Selective IGA deficiency. My son's IGA2 came out very low, and so Dr. Bouboulis told us that he has a Selective IGA2 deficiency and his chances of an allergic anaphylactic reaction to IVIG would be high (close to 40 percent) unless he gives him IVIG without IGA in it. According to Dr. Bouboulis, IVIG is still effective that way and there would be no worry of allergic reaction if he had IVIG without IGA. So if we proceed with IVIG, it will be with this immunologist and there will be no IGA in it. We have known about my son's low IGA for a long time, and Dr. Bouboulis has been the first doctor who has been able to offer IVIG in a way that would not be risky too my son, and so I feel lucky to have found him. Feel free to send me a pm if you would like his contact info. Ellen

Worried Dad, this is amazing news. I know that you have tried so many different treatments for you son, and it is great that after searching for so long, you seem to have struck gold with Augmentin. Continue to keep us posted on his recovery. Your story is inspiring! Ellen

Kayanne, I think is an excellent point that you make. If enough of us join and ask questions before we make any donations we might be able to have an impact on the direction of this organization. Right now, when things are just getting off the ground, may be the best time to act, suggest, offer resources and information, and try to persuade. And the more of us involved, the better. I'm thinking that we may be able to accomplish a lot more in terms of directing the research and challenging myths about PANDAS if we are working from the inside rather than just waiting and watching. What do others think about this? Ellen I have reservations too, but do you think if we all joined right from the beginning, we may have an impact on the direction of this foundation...If we just sit back and wait and see, then it may be difficult to re-direct it when it already has momentum? I'm really glad someone is doing it...I've been looking up 503 c non-profits for a little bit...doesn't seem difficult...Dr. Cunningham & Dr. Leckman need some sort of financial support---so maybe we can join this foundation, but be aggressive in trying to point it in the right direction. Beth Malony is asking us to campaign to Oprah, maybe we could do the same to her, requesting that the funds go to Dr. Cunningham. I believe that Mass General is where Dr. Geller is starting his Augmentin study, so that may be why she wants the funds to go there.

My son's PANDAS became severely worse after he received Chicken Pox and Hep A vaccines two years ago. Within a couple of weeks after the vaccines, OCD became worse and we saw symptoms we had never seen before such as long spacing out episodes that seemed like trances and could last for five minutes at a time. He tested negative for a seizure disorder, and since then we have been to several doctors who do believe that the vaccines probably did exacerbate his PANDAS and set off these new symptoms as well. He did not have any impetigo or any kind of rash or anything after the shots. In my opinion, you definitely made the right call in refusing the second shot. Ellen

My son is 13 and in the last few weeks since he is back from PEX, he has been generally more upbeat and cheerful, and he responds more quickly to questions and directions. He is still struggling very much with homework, especially reading, and I am hoping that this is an area where we will see some positive changes in the next couple of months. I will post a thread some time soon with more specifics. The changes are not obvious but they are encouraging. Ellen

Eileen, Dr. Bouboulis has done immunological testing on my son, and if we don't see enough improvements from his recent PEX over the next few months, we may follow with monthly IVIG with him. He is a compassionate doctor, and I like him very much. Feel free to send me a pm if you think you would be willing to travel to Connecticut and want to know more about him or would like the contact information. Ellen

My son had plasmapherisis at Georgetown three weeks ago and there was a similar problem with not getting enough flow on the first day after the line in the groin was inserted. They gave him an anti-clot medication and waited overnight. While we were waiting, we were told that if it didn't work, they would have to sedate him again and reposition the line and if that did not work, we might have to consider doing a new line, possibly in the neck. This was the most stressful part of our week. Fortunately the anti-clot medication did work in the morning and everything went smoothly after that. My son also liked the child life specialist (she did a great job of keeping him entertained) and since he is a big animal lover, he was thrilled with the therapy dog. Overall our experience at Georgetown was positive and we were happy with the attention and care my son received. So far it has been three weeks and we are seeing small improvements that are encouraging, but nothing too obvious yet. My husband and I are hopeful that we will begin to see more obvious changes over the next few months By the way, I did keep him out of school the following week and was happy with that decision because it turned out that there was a lot of illness going around in his school. Ellen

Laura, thanks for sharing this. I am really happy to hear that your son is making a good recovery after plasma exchange. My son is scheduled to receive PEX at Georgetown next week. He had it done last year at Children's Hospital of Philadelphia but it was through a peripheral line and they were unable to complete it due to problems with his veins. Dr. Latimer feels that a central line will probably be more effective. We saw some very good improvements after the last PEX but he still has some major issues with OCD and focusing. Reading (especially fiction) is a problem for him. It is great to hear you to talk about him coming back and being happy. I will get in touch with you with my contact information for your follow-up questionnaire. Ellen

My son also had the immunological testing done recently by an immunologist who has treated a few other PANDAS cases. In addition to a Selective IGA 2 deficiency, he has a low total IGG (593) and is low in IGG subclass 4. Also, he has low IGM and failed 12 out of the 14 strept pneumoniae serotypes with numbers less than 1. The immunologist is strongly encouraging us to consider monthly IVIG with him. What surprises me with all of this is that over the last year and a half (since he started seeing a DAN doctor and got on a gfcf diet and numerous immune supporting supplements) he has not been sick except for a couple of colds and some seasonal allergy flare ups. He still has significant OCD and focusing problems and right now I am thinking that that best plan for him would be to pursue PEX with Dr. Latimer (I am waiting to hear back from her) and possibly follow up with monthly IVIG with the immunologist who did the testing. The immunologist feels that because of his Selective IGA2 deficiency, he would have to give him a form of IVIG without IGA in it. Otherwise he says his chances of an allergic reaction to the IVIG could be as high as 40 percent. According to the immunologist, giving the IVIG without the IGA eliminates the risk of allergic reaction and is just as effective. Ellen I don't know the exact number who have been tested. I'll have to check with Diana. I did read a post last week or earlier this week from a Mom whose child did not fail the titers or Ig's. But that is one out of the approximately 15 that I believe have had the blood work. With my dd-it looks like a total of six have actually rec'd a dx of an immune deficiency and four of those will be have monthly IVIG for six months or longer. I need to make a better list but just haven't had the time. Can you have your Ped or someone run the tests and then you can try finding an Immunologist with results in hand if there are irregularities??

I have yet to find a book that contains the kind of detailed information and stories about PANDAS that we have all shared on this forum. So I'm hoping that one day one or more of us will be able to write and publish the books about PANDAS that we have not been able to find but are so eager to read. Ellen

Kim, I agree with EAMom about this suggestion. My son is 13 and has PANDAS and we also live in Connecticut. I strongly recommend seeing Dr. Leckman at Yale for a consult. He is an excellent doctor, who is not only knowledgeable about PANDAS, OCD, and Tourettes, but also very caring and compassionate and willing to give you a lot of his time. My son's case has been a complicated one, and Dr. Leckman has been a big help to us. We are also working with DAN doctors who have been very helpful too. I will send you a personal message some time soon and tell you more. Ellen

I am so sorry for what you are going through and I understand how difficult it is on everyone when you are in an acute crisis period and have to worry about everyone's safety. I believe my son, who is 13 and recovering but not recovered from PANDAS, would be willing to talk to her and offer support. Our son's case was extreme and he had to endure seven psychiatric hospitalizations over a six month time period before he began to improve over the last year through a combination of interventions including a gfcf diet and supplements, plasma exchange, and most recently, neurofeedback. He still has some significant OCD and focusing issues, but is much more stable and calm and more like his old self in many ways. He would probably be very open to talking to your daughter. I will speak to him about it after he gets home from school today and send you a personal message some time soon. Hang it there! I've been where you are and I know it will get better! Ellen

Buster, thanks for your explanation. I have one question. Who are the controls from this study? Do they have Tourettes and OCD considered to be not autoimmune related or are they "normal" kids with no Tourettes or OCD at all? Ellen

Here are my son's results (age 13) anti-lysoganglioside 640 anti-tubulin 2000 anti-dopamine 1 2000 anti-dopamine 2 4000 These results came yesterday. Over the weekend, I received an e-mail explaining that his CamKinaseII result was 131, which I was told puts him in the PANDAS range pretty solidly. I am not at all sure about how to interpret the antibody titer numbers. Any information that anyone else has about this would be helpful. Ellen

HBOT is Hyperbaric Oxygen Therapy.

How helpful was HBOT? I am curious because my son's DAN doctor has said that it reduces inflammation and she has talked about trying it for him some time in the near future. Ellen

I am happy to hear your appointment with Dr. Latimer went well. Our appointment to meet her is on Friday. We are waiting on my son's results from the Cunningham test, so I'm thinking she may want to wait before putting him on steriods. It helps to know your experience was positive. Thanks for sharing. Ellen

Nancy, I have read Healing the New Childhood Epidemics, and I loved it. Now that I know your daughter is one of the case studies I will go back to it and look at it again. Best of luck with whatever you decide to do! From reading your posts, I can see that you have a lot to share and offer other parents. I am sure you will find the best possible way to present it, and I look forward to reading (or viewing if there is a documentary) whatever comes next. Ellen

Nancy, I think you are on to something with this idea about showing the various ways infections, toxins, and other environmental triggers contribute to these disorders and I think if you made the biomedical treatment piece a big part of your focus you might have a big enough market for your book. In my quest to help my son recover from PANDAS through working with DAN doctors and a biomedical approach, I have been eager to read any books dealing with biomedical approaches to autism or related disorders and I think many parents of kids with PANDAS, autism, OCD, Tourettes, ADHD or related disorders want to hear the success stories and want to know more about causes as well. One idea for you next book might be to collect and share stories of families who have helped their children improve and/or recover from autism, PANDAS, and other related disorders through biomedical intervention. Just a thought. If you wrote a book like this one, I would be one of the first in line to get my copy! On another note, I am glad to hear your daughter likes to write, and I hope you have a chance to write something together some time. I am also looking forward to reading your recent autism book. Ellen

I agree with Deanna, that maybe you should call Dr. Latimer. Also I was recently speaking to my son's DAN doctor about the possibility of him going on steroids (our appointment to meet Dr. Latimer is next week), and she told me that some children can get hyper on steriods because they can cause or aggravate yeast issues. Her advice to me was to contact her after our appointment next week if Dr. Latimer plans to try steriods. The DAN doctor would increase the probiotics he is on and make some other adjustments with his supplements before he begins any steriods. I was just wondering if your son was on probiotics now or should be while on this steriod burst. Sorry you have been having a hard time, and I hope things begin to turn around soon. Ellen

My son's PANDAS became much worse two years ago after Chicken Pox and Hep A vaccines which he received during a time when his environmental allergies were acting up. I remember asking the pediatrician if it was okay for him to have the shots together while his allergies were troublesome that summer, and she assured me that it was fine. Within two weeks after the vaccines we saw a huge explosion of symptoms which involved not just a return of tics and OCD but also bizarre spacing out episodes that lasted for minutes at a time, hyperactivity, pacing, major sleep problems, an inability to do homework or focus (he was previously an A student who never missed an assignment), and eventually screaming episodes and rage attacks. After two years and numerous treatments and interventions including plasma exchange, he has made some great progress but he still has many issues and I do blame those vaccines. Now, after much reading and talking to medical experts, I have learned that children with PANDAS can have exacerbations following vaccines and the two most commonly seen associations are the chicken pox and hepatitis vaccines. I was also told by one doctor that children with PANDAS should not have vaccines but that I would not find that anywhere in writing. I so wish I had this information before I let Simon have those vaccines. Even though I believe Chicken Pox and Hepatitis vaccines may be the worst ones for kids with PANDAS, I think all vaccines including flu shots pose a risk and it is a decision that should be carefully thought out and discussed with a doctor who is very knowledgeable about PANDAS. I personally would not agree to any vaccine for a PANDAS kid even if it becomes a legal requirement, and if I were you, I would check about the laws in your state as far as what you need to do to get an exemption.If you do decide to vaccinate, never do more than one at a time and never when your child has allergies or a cold or any other immune system issue going on at the time. Any vaccine including a flu shot can overwhelm the immune system, and it is my personal belief that it is not worth the risk. My husband and I made choice to refuse vaccines for Simon since this happened, and we have also stopped vaccines for his younger brother who does not have PANDAS but could share the genetic vulnerability. I know this is a very controversial issue, but I feel I must speak out to possibly spare other parents from going through the nightmare our family has experienced. I hope this helps. Ellen