mom md

I think steroids would be the right choice. If these kids are caught early they can be treated with antibiotics, or antibiotics and steroids. If she responds to steroids great...if she responds and then relapses I would move forward with IVIG if possible. By the time these kids develop chorea and tics often antibiotics alone is not enough. I would strongly recommend having a phone consult with Dr. K or Dr. Latimer. We did and it offered me a much better understanding of the disease. The strep is the initial issue but the key is to get the antibodies removed. For us, we did PEX with Dr. Latimer. My son had PANDAS which progressed to rheumatic chorea in January. We are now 8 weeks out from PEX and he is cured. We are not sure but we think he had it for 3 years prior to this. We chose PEX because his titers were so high they fely we would need 6-9 months of IVIG before he was cured. If your daughter has only had this for three months steroids will probably work. If not IVIG would. Please know we have all walked in your shoes and are eager to help you. If your child does not have a documented gluten/dairy allergy I would not sweat over that stuff too much. I think the probiotics are important, fish oils, etc. I am working with an immunologist regarding the flu vaccine. After we do my son's bloodwork we will be talking to the NIH. Swedo at the NIH says no, but I just read an article about a 15 yr old kid, otherwise healthy, that died from H1N1 in the New England Journal of Medicine. I can treat PANDAS but maybe not H1N1. I will post what I know as get info. I think there are very few people that should not get the flu vaccine. I will not be giving it though until I get more info.

He is on Azithromycin 250 mg qd but I do not think that is right. I think that was fine for treatment but not for prophalaxis. We are going to see a pediatric infectious disease doctor in Nov and I am going to pass the antibiotic torch to her. My guess is we will just follow rheumatic fever guidelines. I have to say though that I am finally starting to relax a little. I thin I am realizing that PANDAS can be cured if treated correctly. If we are unfortunate to get it again we are now looped into the correct doctors and will just treat it. Hnag in there.

We are going next Thursday to see her. Please let me know if you have any questions about PEX if you get to that point. I know things always seem better looking back but it really was not a big deal. He truly seems cured too.

We saw an immunologist today and things went well. She said we were her third patient with PANDAS and she was very interested in it. She agreed to contact Madaline Cunningham and Swedo at the NIH. She was also willing to develop a team approach and work with Latimer. We are having no issues after the PEX right now but she agreed to do IVIG if needed in the future according to their protocol. She also felt we neeed to test my son for CVID. We had a ton of labs drawn which will be back in 4 weeks when we go back. She allergy tested him today and he had a significant reaction to probably 75-80% of the things she tested for. She did some additional blood testing but said we definitely needed to pursue allergy shots. She said his immune system is in a "hyper state" and we needed to work to calm it down. Overall, it was a productive visit. We are heading to see LAtimer again next week.

we are 8 weekd post PEX and doing pretty well. I know my son would love a penpal so let mne know and I will e-mail you our address or you can send me yours. I think it would be great for them to realize they are not alone.

Abosolutely. This was a big one for us. It was a real problem at school and he was the only kid that would work standing up. I bought him a cushion with air in it like they use for kids with vestibular sensory disorders which helped a little. He could stay seated and move around. It is unbelievable now though after PEX. Problem solved. I talked to his teacher yesterday and she said he has not gotten up once. Just 8 weeks ago he could not sit still.

The other good option is gabapentin which is available by perscription. It is a "other nerologic" drug and is used for seizure disorders and neuralgia. When we thought my son had restless leg syndrome prior to the PANDAS diagnosis it was perscribed. It really helped him sleep and is safe. I spoke to someone the other night and it inhibits dopamine (which is high in these kids) and can help. Ultimately is did not cure our issue (PEXdid) but it helped his body rest and heal. melatonin helped my son fall asleep but not stay asleep.

I recieved a phone call from my son's teacher today and of course my blood ran cold. I think I truly have PTSD. After only one week of school she said she wanted to give me an update. Last year he was dancing around the room, unable to sit in his chair, lacked focus, had tics, OCD, etc. All the things we all know so well. The teacher said today after reading his file they have been floored by what they see so far. He has not gotten up from his chair once. He has had no tics, is calm, and does not even fidget. Unbelievable. She did say he had a few issues of impulse control in his special area classes like PE and computer and has gotten spoken to a few times. She said once or twice he seemed a little distracted or not focused but when she asked him a question he answered it correctly. She said his behavior in class has been great. We are heading to see Latimer August 16th and I will keep everyone posted on what to expect with brain healing, etc. I am still seeing some subtle signs of PANDAS but overall at this time PEX was a success. The teacher also offered to be tested to see if she was a strep carrier. Obviously i can't ask the whole class to do that but what do you think?

One of the issues with PANDAS is the process causes an increase in brain dopamine levels. If you are looking for something to sedate her with I would use Haoperidol or seroquel which antagonizes the dopamine D2 receptors. Seroquel can be given orally and is something she could take until you can follow-up with her doctor. Hang in there. We are all thinking of you.

We did PEX at Georgetown July 6th so we are almost 8 weeks out. We did see drastic improvement, the most astonishing was the moods swings were gone. Almost immediately he was patient, calm, and slept well. His anxiety resolved as well as most of his chorea. He even said he felt better. About 10 days ago we saw some mood swings come back but they were gone again before I could contact Latimer. I still see sporadic chorea (it is subtle and I am sure my husband and I are the only one who see it) but his mood is great. We went out of town this weekend to a church retreat and really pushed his system by staying up late, we had just started school, and he had a cold. I can actually say he looked just like all the other 8 year old boys running around. I am convinced he is SO MUCH better. This morning I got up and he had made his bed, dressed himself, brushed his hair, and was downstairs eating his breakfast he had made. These are all things that NEVER would have happened pre-treatment. I am glad to see what that mom said though about it taking 6 months. I think that explains some of the chorea I still see. I am still struggling though about how not to over-react everytime I see a glimpse of the stuff we saw before. as my pediatrician said, "it is like a parent whose kid had leukemia, everytime they see a bruise they relive the fear." I think I have PTSD! Hopefully, time will help that. My best to all, Claire

I have been reading about CVID and I will definitely get this looked at when we go to the immunologist. My son has several of the signs and it may explain how we got on this journey. On a positive note...we had a great first day of school. We went from school to a doctor's appointment, errands, baseball, and then racing to bed. At any point along the way we had multiple opportunities to see regression and had none. He truly had a PERFECT day. I, on the otherhand, did not do as well. After a great day I told him to go upsatirs and get in the shower. I walked upstairs 30 minutes later and he was playing in his room and did nothing I had asked him to do. I yelled at him and told him to get in the shower, etc. I really over-reacted. I was talking to my mother-in-law tonight and I think I have some PTSD (post-traumatic stress disorder). When I see him wandering around his room and playing, my mind goes straight to PANDAS. I get anxious that he has lack of focus, etc again and I really over-react mentally and tonight verbally. Looking back now he had MULTIPLE TIMES today he could of showed PANDAS issues and did not. Not one. He has had PEX and is cured. I now need to learn to be normal. As my pediatrician told me today though..."it is like a parent of a kid with leukemia, every time they get a bruise they have a hard time not going there mentally". Hopefully, time will help cure. I realize the slight signs we saw last weekend were just a "sawtooth" moment and we really are better. Now I need to give myself the patience to do the same.

BCBS of NC did cover our PEX. I am not sure which code they used but I will try to find out.

I know I have not posted in a long time but I am trying to learn to be "normal" again. Carter had PEX July 6th and his results were really dramatic. His chorea was almost gone, his mood was patient, sleep was great, etc. I still saw occasional "signs" but they were very minimal. Just in the last week or so though I feel like I have seen a few more obvious signs. I have seen a few more chorea movements and a few more emotional moments. Just in my brief knowledge of brain healing I am trying to stay focused on the positive. Everyday is still a good day, and that his nerves are still healing. I know patients who have limbs amputated still have "phantom"nerve pain up to a year after the limb is gone. Stroke victims are not even evaluated really until 6 months and then a year after a stroke. I did not know if anyone who had done PEX had seen a little of the "sawtooth"approach? On a positive note too, I met with my son't teacher's today and they were both very receptive to PANDAS and had read everything I had sent. One even offered to get tested to see if she was a "carrier". They also are going to have the school nurse send out a letter to parents (like a lice letter) saying a child had an allergic reaction to strep and please take your child to be evaluated with any sore throats and do NOT come back to school until they have completed the first 24 hours of antibiotics if they are diagnosed. I felt we may just have a good year. I am meeting woith an immunologist soon to develop a immune system plan for Carter and also to see if he has any other deficiencies. I am also meeting with an infectious disease docotr in Nov to sort out this antibiotiv plan and have her pick which one. I promise I will continue to post and keep everyone posted on what I learn. As I said to my mom today, "I must learn to now live with it and not be scared." Hope to all...

They have been working on a strep vaccine but as Dr. Cunningham said..."the more we learn about this vaccine the more we fear it." My guess is it will never happen as they worry it will unleash PANDAS, necrotizing faciatis, etc. They are all very aware of the possible ramifications of a vaccine and are too frightened to give it.

My guess is they are rheumatic nodules which are a TANGIBLE sign of rheumatic fever and PANDAS. I would take a picture of them for documentation because I don't think they last long. Look it up on the internet and compare picture. Very interesting.

My son had headaches too . They seemed to respond to Advil.

Carter is 8 now and was diagnosed at 7 1/2. Looking back it is unclear when his symtoms really began but maybe 2-2/12 years ago...maybe even 3-4. His story is a little different because there is no "magic" date on the calendar but a slow wax and waning of symptoms that progressively got worse over time. We had two rounds of Augmentin and steroids last year for "sinusitis" and all the other behavioral and other symptoms got better. Looking back we were treating pandas but did not know it. His more severe symptoms did not begin till this fall and then true chorea and really bad symptoms in January. Also looking back he had night sweats, migratory joint pain, rash, etc. With every symptoms we always had an explaination until the tics and chorea began. We thought he had restless leg symdrome and just moved all night long and that was why he was anxious, moody, had poor impulse control, etc...we juast thought he was not getting any sleep. He failed every treatment we gave him and then started noticing the "classic" signs of anxiety, OCD, tics, echolalia, muscle weakness, dysarthria, and finally chorea. You feel really dumb as a physician to not have seen it and diagnosed it but when he was diagnosed I thought "how can my kid have something I have never heard of and was never taught in medical school?". I did not believe it and kept seeking second, third, and even fourth opinions. Everyone we saw agreed it was PANDAS. I remember reading the symptoms and thinking that wow, this would explain everything. Now that we have completed PEX every day I notice little things that he no longer does that he did before. They best way to describe him now is normal. Just a little brief example of life after PEX which we did 4 weeks ago. My mother and father in law have a vacation home in the Bahamas and my son refused to go last year. He could not tolerate flying over the ocean and was crippled with fear so we did not go. We are at the beach now with my parents in Florida and two days ago my son asked my father to take him flying in his little plane. This is a TINY four seater plane. My father flew him over Amelia Island and low over the ocean. Carter sat in the front seat and loved it. He wanted to do it again the next day. I am shocked!!!!! My parents can also see a hugh difference. I still see minor traces at times as the brain is healing but they are so fleeting I am wondering if sometimes I am imagining them even.

I would give the vaccines but I would delay them and spread them out. I think the Sear's method is a good idea.

Maeve O' Connor at Charlotte Allergy said she is interested in seeing us for PANDAS. We are set to see her Sept 9th. I am sure she could help you.

I am also happy to participate. Our story too involves anxiety, OCD,etc progressing to true chorea because so many other diagnoses were entertained. We finally figured it out and recieved antibiotics anf finally PEX. We seem to be cured. If you look back at Sydenham's chorea those patients also presented with psych issues and then developed chorea. Our blookwork with Cunningham put us in the SC range. It shows that SC which maby people think does not exist still does. It also show that if left untreated PANDAS can turn into SC. It appears to be a spectrum of a disease. If caught early antibiotics may work or steroids, if not then IVIG and PEX are indictaed. We also thought he had ADD/ADHD, anxiety, OCD, restless leg syndrome, etc...all the while it was PANDAS.

We did have our dog tested after we saw Latimer. I had actually heard this before we went but she prompted me to follow through. My vet said she had to look it up and call her lab to figure out how to do it since she had never been asked that before. My dog had to be sedated to culture her deep into her throat and GI system. It was negative. The sedation was pricey so I threw a teeth cleaning in! Just some other thoughts...I also purchased toothbrush cleaner (the egg ones that zap the toothbrush after use and kill 99.5%) of bacteria on toothbrushes and switch the toothbrushes out each month. The cleaners are about 30$ a piece. As, far as the steroids go I think she is still using them short term. The side effects you see that are bad happen after much longer use. Also, the hem/onc docotr we saw up there that ran the PEX said that she and Latimer were going to start working together on this disease. Someone who went recently said she told them that her immunologist, hematologist, and her were going to work together. This is great news!!!

I don't have a coding book right now but 279.4 is autoimmune disease not otherwise specified. Encephalitis is 323.8 and 323.9. Hope this helps and good luck.

No, he is not IGA deficient but is in the 1% of people that have an allergic (serious) reaction to the plasma proteins in the pooled blood serum. IVIG has more pooled blood product than PEX with albumin so he has to do PEX in the future (and be on IV steroids around the clock when he does it). Luckily we were in an ICU when he had the reaction so the whole thing was handled correctly.

I would probably not increase the Topamax. I would keep him on the lowest dose possible. I did not give my son any medication (except his antibiotic)before we saw Latimer because i wanted her to see him at his "purest". I am glad you are going to see her soon. Hang in there.

My son started chewing collars about 6 months ago. His brother has PANDAS so my first thought was "oh no, i can't handle another!!!!" That appears to be his only issue though. The doctor said it was a habit and not to worry. It will pass. He tends to do it when he is working on something or focusing on the computer. He did LOVE his pacifier until 3 when we took it so it may be a oral thing. I went and bought some sugar free gum to see if I can re-direct the chewing from his shirt. I agree he has ruined many. I will try to take out food dyes but he really doesn't eat many if any at all.