kimballot

Great ideas on the 504 plan. I wanted to add that two helpful accommodations we had for my son were: 1. A seat at a table in the back of the room that he could go to when he was feeling the need to get out of a situation (fight or flight response). If he moved to the back table, the teacher knew that something was up and she could then address it and escort him to the social workers office if he needed to talk. This was important because my son "bolted" from the class room or crawled under a desk and refused to come out a few times. 2. This was "upgraded" to a laminated pass to the social worker / guidance office in middle school. He probably only used the pass 2-3 times a year, but it was very comforting for him to know that he could flash it and go - no questions asked - if something was bothering him. I think that the classroom teacher probably called or emailed the social worker to let her know he was coming when this happened - just to be sure he did not leave the building.

Oh - and I meant for the above to be considered in light of the mouse study and other info. from Vickie - pick what works!

So, when we write a comment, include a link to the Columbia mouse study to comabat the study they used to disprove PANDAS. Then Swedo's quote about other triggers in subsequent episode to combat the second paragraph about no strep infection and remind them about how some kids will have strep w/o a rise in titers, if that is what they finally used to deem they did not have a strep infection. And, finally, how more research needs to be funded so an actual diagonsitic test is developed to avoid all the confusion in the med community. Anything else? I agree that they likely did not read the article or only read it with the "spin" they wanted. Here are some points that stand out to me - but I tend to get caught up in details more than others: Thank you to Dr. Leckman and colleagues for investigating the role of the immune system in Tics and OCD. 1. This was a study of kids with Tics and OCD compared to kids without. In actuality, only 11 out of 46 kids with tics and OCD in the study had PANDAS. 2. The study found that while stress does increase the likelihood of Tics, OCD, and Depression in kids with Tic disorders (which is not a new finding), Strep exposure alone also increased the likelihood of tic and OCD exacerbations, but not depression. This means that Strep may be affecting the brain in a manner that is DIFFERENT from general stress. 3. The study also found that kids in the PANDAS subgroup had more infections than the other kids with tics and OCD, and another study in the same journal found that kids with PANDAS had significantly lower total IGA and lower and anti-myelin basic protein (MBP) than kids with non-PANDAS tic disorders or kids without tic disorders (http://www.ncbi.nlm.nih.gov/pubmed/20006327). This means that a group of kids with Tics and OCD seem to have immunological underpinnings to their disorder. 4. Unfortunately, both the current (stress) study and the "recently completed intensive longitudinal study that tracked a larger number of PANDAS cases [that] found little evidence to support a link between newly diagnosed strep infections and a marked worsening of tic or obsessive-compulsive symptoms" included many children who were on medication to reduce tics and OCD, so it is impossible to know the true effect of infection on their behaviors, as the tics and OCD were likely masked to some extent. Finally - thank you to everyone who is helping to gain a better understanding of PANDAS. Through this research we can identify the most efficient means of addressing the immune problems in this group of children.

Thanks so much! That brings up lots more questions, but I am going to post a new topic so I don't hijack this one!

A recent post asked folks if they regret doing IVIG. As the post progressed the topic of IVIG dose came up. I have heard about people getting a one -time delivery of IVIG or two-time delivery of IVIG and I have also heard about people receiving IVIG on a monthly basis for an extended period of time. I've also heard that some people get 1.0 mg, some 1.5, and some 2.0. I am trying to sort this out and see what people have had success with. For those of you who have done IVIG - I am curious as to the age of your child, if your child had immune deficiencies, and the dose and frequency of the infusion. Thanks so much! ps- if there is already a thread about this that I missed could someone help me find it? - thanks

i agaree in that if it sounds lecutrey, angry , we nay not get the response we'd like one idea for who ever may write this is...take snippets from other artilces...even the things that postulates theories of why things are working even though they shouldn't, because it's already well thought out, ... like the article i just posted and make sure you include a bibliography..... I agree - and I lecture for a living, so I am probably not the best person to do it! If I have time later I'll try to pull out a few points but only if others are willing to honestly tear it apart. If anyone else wants to take a stab at it, I'm happy to put in my 2 cents.

Nancy - How long ago did you do IVIG, and did you just do one round?

Perhaps we need to align forces and try to send the same message to every site we find. Perhaps we could enlist Buster's help to come with a rational, understandable response to this misrepresentation of the article, and we could try to post similar words... you know - kind of like "talking points"...

Man - sometimes I really hate the popular press! Buried beneath this nasty title is the hint that there were a small number of kids with PANDAS in the study. Actually, there were 41 typically - developing kids and 46 kids with Tics / OCD - of which 11 had been previously identified with PANDAS. So they did not find statistical significance for much, but with that small of a number it is not surprising. They also did find more GABHS infections in the PANDAS kids compared to controls or Non Pandas Tic/OCD cases... again not significant, but that could have been due to the low numbers. Overall, though - it seems that this group of authors recognize that some kids have infection-triggered responses, but they are questioning the GABHS piece (I know - we have already found out that it does not have to be GABHS -- unfortunately, it will take years to get that in print in 50 different ways to make it a fact)... Overall, I think this group has some interesting work with immune deficiency, though this is certainly not my specialty area. I'd love to hear other people's take on another article that was in the very same issue of Biological Psychology, which also included Leckman - it found the following: Children with Tourette's syndrome may suffer immunoglobulin A dysgammaglobulinemia: preliminary report. Kawikova I, Grady BP, Tobiasova Z, Zhang Y, Vojdani A, Katsovich L, Richmand BJ, Park TW, Bothwell AL, Leckman JF. Department of Immunobiology, Yale University School of Medicine, New Haven, Connecticut 06520, USA. ivana.kawikova@yale.edu Abstract BACKGROUND: Postinfectious autoimmunity has been implicated in Tourette's syndrome and obsessive-compulsive disorder (TS/OCD), whereas increased frequency of upper respiratory tract infections (URTI) in TS/OCD patients suggests immune deficiency. We hypothesized that antineuronal antibodies may be elevated in patients (reflecting autoimmune processes), and levels of total immunoglobulins (Igs) may be decreased (reflecting immune deficiency). METHODS: We analyzed plasma of TS/OCD patients (n = 24) and healthy age- and sex-matched control subjects (n = 22) by enzyme-linked immunosorbent assay (ELISA) for the levels of total and specific IgG, IgM, and IgA against antigens previously identified in multiple sclerosis (myelin basic protein and myelin-associated glycoprotein) and Sydenham's chorea (ganglioside-GM1, lysoganglioside, and tubulin). RESULTS: Total IgA was decreased in TS/OCD patients (median 115 mg/100 mL) compared with control subjects (141 mg/100 mL; p = .02). Specific IgA against all antigens, except tubulin were also decreased in the patients (MPB 0 vs. 13 [ELISA units [EU]; myelin-associated glycoprotein 29 vs. 44 EU, p = .04; ganglioside GM1 21 vs. 35 EU, p = .01; lysoganglioside 44 vs. 56 EU, p = .03; tubulin 44 vs. 44 EU, p = .8). The levels of total IgA and anti-myelin basic protein (MBP) IgA were significantly lower in the subgroup of pediatric autoimmune neuropsychiatric disorder associated with Streptococcus (PANDAS) cases (n = 10) than in non-PANDAS cases (n = 9; total IgA 98 mg/100 mL vs. 133 mg/mL, p = .03; anti-MBP IgA 1 vs. 6 EU, p = .03) or healthy control subjects (total IgA 141 mg/100 mL, p = .02; anti-MBP IgA 13 EU, p = .005). CONCLUSIONS: At least some TS/OCD patients may suffer IgA dysgammaglobulinemia, possibly rendering the children more prone to URTI. Copyright 2010 Society of Biological Psychiatry. Published by Elsevier Inc. All rights reserved. http://www.ncbi.nlm.nih.gov/pubmed/20006327

Amy - Thanks for checking in and posting. So happy to hear of your success! It gives me strength to continue moving forward!

I just had my son's drawn on Monday. We use Quest and I called the local main office beforehand to explain. They were fine with it and did it for free as long as it was for research and as long as the shipping was prepaid (it was - the Cunningham lab takes care of that). Just freeze the icepack, sign your consent forms, write up a brief history and put it all in with the blood. The biggest challenge for the lab was how to label the tubes, since they did not have printed labels - they just put blanks on and hand - wrote his name. Be sure to do the blood draw early in the week. We had ours drawn Monday at 9 am and it did not get to Kathy until 10:45 on Wed. One more day and it would not have been cold any longer. If we drew on Thurs. it would not have gotten there until Sat. and they are closed over the weekend.

That is a great question I don't know if I have the best answer here, but PANDAS is not officially a disease, because it is not in the International Classification of Diseases nor is it in the Diagnistic and Statistics Manual for mental health diagnoses. Therefore, Doctors cannot bill for "PANDAS" or code for "PANDAS". Is PANDAS an illness? Illness means that you are not well. It would seem that our kids are sometimes ill due to PANDAS. They are ill with tics, OCD, ADHD symptoms and such. I call PANDAS a neuroimmunological condition. I don't know if that is a real term... but it seems to fit. Once you have the condition, you are not cured of it. You can be cured of the illness, but the illness may return at a later date. I am interested in seeing other people's interpretation of this.

OK... my son and I both have mild cateplexy (mild loss of hand strength when emotional (laughing) or when first waking up in the morning. My son is the only other person I've ever known to have it besides myself. Is this something I should be looking into? (and who would I look into it with - Dr. T??) We have no other signs of narcolepsy that I know of... but maybe I've not been looking for it...

Buster - always a pleasure to read your posts and thank you for the heart felt words. I struggle with the idea of "sudden onset", because my son did have what I consider to be a "sudden onset", at about 1 year of age. I can remember suddenly realizing that he could not control his behavior - the biting was endless... the inability to fall sleep, inability to stay asleep, outright defiance... all wrapped in a little toddlers body. All went away when he went on antibiotics for yet another sinus infection. All came back when the antibiotics ended - time after time after time... all twisting and turning into seven years of "high dose", "low dose", "no dose" antibiotics of various types coupled with behavior management and sleepless nights and lots of doubts and fears, until he finally had his tonsils removed and everything calmed down. But what was left was so ravaged... it was difficult to recognize the pieces, and now, 6 years later, we are still trying to determine how the pieces fit together. How many children have a sudden onset at a young age, or at the age of two when all children look like they could have ADHD and OCD- so we don't even recognize the onset? I so appreciate reading of the experiences of all the families that are struggling with this condition. Evidence - based practice says to consider all of the evidence available, but many people forget that expert opinion is one form of evidence - and when there is a new diagnosis it is often the only form of evidence. The studies - limited as they are- are so helpful, and they help to keep me objective... but the experiences of the families on this site -the PANDAS and the zebras - are helping me to recognize the pieces so we can put them together... I am seeing new pieces that I did not know existed .... mycoplasma, CamKinase levels, IGg levels, strep carriers, allergies, ibuprofen.... all new pieces that are fitting together. And Alex - thank you for reminding me that I AM going to see my son on the other side of this. I am going to put all the pieces together somehow and we are going to look back on this one day. And I hope that my experiences will add to the knowledge that helps others to recognize the pieces sooner.

Very interesting ... and my son (also 13) just informed me that he went to the nurse's office to sleep today and then he fell asleep after dinner at his cousin's house... My daughter is just finishing up a 5-day Z-pack for strep and my husband is just finishing a course of biaxin for the same... I am hoping Buster chimes in on this one - I need the reader's digest version!

Thanks for sharing, Buster!

I have a zebra. As soon as my zebra is recovered, I will gladly share my joy and help others receive appropriate care. Until then - thank you to everyone who is paving the way for our family!

Sometimes being a counselor means that you are more sensitive to the symptoms and notice them first. Others may not realize that a particular movement is a tic or a particular behavior is a compulsion... so they think everything is fine. Being the parent of a child with PANDAS puts everyone in the "expert" category pretty quickly and we soon start to recognize our own children's patterns - again - well before others might see them.

Two things come to mind with these posts - First -I worked with quite a few kids with tourette as a professional before having my own children. The parents often told me stories of the kids holding in their tics in the classroom at school and then going to the bathroom to quietly tic when they could not stand it any longer, or having their parents pick, them up from school instead of taking the bus and then they would tic the whole way home. Tics and OC behaviors are personal and private and kids often do not share them with people with whom they are not extremely comfortable. (though I too have often secretly wondered if I was somehow making my child sick!) Second, - on a separate note - Tapiash - does your son have allergies? I know it may seem that if he does the allergies might be worse on a weekend of camping... but you may have something in your home that is triggering it. My son had his WORST every tic attack one year when visiting a friend. He was 6 years old and over the weekend developed very odd neck twisting movements, and a need to walk 3 steps and then lean forward (this went on all day at a carnival - to the point where I carried him), along with vocal tics. We ended the vacation early so I could get him home. Within 3 hours of driving home in the air conditioned care - the tics stopped. Six months later my friend discovered black mold seeping through the ceiling in a bedroom. She and her daughter had been sick with ear and sinus infections for months. She then proceeded to have several months of mold abatement throughout the house. Sometimes our kids truly are the canaries in the coal mine!

Wow! Executive functioning is always the first to go and the last to return for us. Has anyone ever had CRP levels or any other infammatory markers checked in our kids?

I got involved with the site pretty recently. Please let me know if there is anything I can do to help - sending my story, getting folks to vote when the time comes, etc. Thanks!

Keeping my fingers crossed!!

Susan - I hope she is having a better night. I don't want to overload you with info. right now, but you mentioned concerns about yeast overgrowth with antibiotics. We've had luck using diflucan with antibiotics. I always get a rx for 2 pills per 10- day course, taken in the middle, and at the end to keep yeast in check. The first time we used it, though, we used it daily for a week or two to really clean things out. I don't know if anyone has had any negative effects with diflucan, but we really like it. Best of luck!

Oh my - so sorry to hear about this. I am trying to remember if you've posted about allergy shots - did she just start recently?

I haven't heard about no phenol enzymes. Where could I find out about them? We were using cromalyn (now gastrocrom) regularly, but now just use it if my son has an obvious reaction (usually hyperactivity with red cheeks & ears). I'd love to learn about other options.