norcalmom

Thank you Kim. I just ordered them. They didn't have a page on shipping or when to expect them or anything...kinda weird, but I did get an order confirmation so I guess it went thru.

http://www.pandasnetwork.org/buster.html The above link is a summary of most of the pandas studies that have been done. Summarized by Buster. Also on that site are some videos, Lauren Johnson, and there is a presentation by Susan Swedo at last years Autism One conference under video library. The Cunninghams Study - you can read the summary of it at : http://intramural.nimh.nih.gov/pdn/pubs/pub-19.pdf Thats another good one for your doctor. Although, I'd try to find a different doctor rather than try to change her mind!

Yes - we've have sensory issues too. I think you are right to go one step at a time. Least invasive first and see if it warrants the next step. Please keep us posted. I'm sending you good thoughts! k

If it helps any - my son yells at me too. He tells me I don't know what I'm doing - I'm stupid, an idiot, and that he doens't want IVIG or blood tests, they don't help and I'm a fool to think they will. When I hear that sometimes I think he is right! But I NEVER think I will cave to that kind of thinking. I'm going to fight this thing, and if he is too tired or weak to fight it, I'm going to help him (or make him - kicking and screaming). 11 year olds that have pandas are not capable of making decisions for themselves. They are capable of complaining and whining and nagging you until you tell them they don't have to take their antibiotic. Alot of kids have it far worse. Parents too. He doesn't have terminal cancer. He can walk and play and have friends. He goes to a normal school. He doesn't have to do hours of OT per day, or take any medicine beyond an antibiotic. Things could be worse. I've read alot of posts on this forum. There is always worse. It broke my heart to read LaurenJohnsonsMom recent post saying that Lauren has an older brother, that they had to send away to live with grandparents (many miles away) in order to keep the smaller children (and no doubt themselves) safe from his rages. They want him to get evaluated for pandas and get IVIG (he didn't go into remission)- but he is 18 now, an adult that makes his own decisions. He doesn't want to go. This was under a thread about rages and how to control them. At 11 my son occassionally has "tantrums" (when I swallow food in front of him it plays over and over in his head and makes him very mad at me) he hasn't gotten physical (yet). But he has slammed things around, called me names and thrown things. He is almost my size - what will happen when he is 6'2" like his cousin (age 13), and I can't restrain him? When the hormones kick in on top of the pandas? I have read about "turning back the pages" but I haven't read that anyone regrets the decision to do IVIG long term. There are several threads on the subject.

I've asked myself some of those same questions. Unfortunately there is no longitudinal study, or even a survey, to see what best treatment for pands long term It comes down to a few things for us. 1) I want ds in the 90%(?) that out grow it a puberty. If antibiotics and IVIG increase those odds, I'm in. 2) DS is under incredible amounts of stres just trying to function like a normal person, perform in school, etc. What kind of harm might that stress do to him over time? What about his self esteem? What if he starts to self-medicate? What if it becomes too much and he becomes depressed or suicidal? Middle school is tough enough without pandas. Can you imagine with it? 3) For ds it isn't just tics. The tic that sent us to the doctor in the first place is the least of our worries now. 4) What if I take the "do nothing" approach and he ends up in the percentage that don't go into remission at puberty. How could I live with myself? Of course, there is the risk that I do more harm witht he antibiotics and IVIG than without. I've used every possible bit of information I can get my hands to try to weight the risks and benefits. And, for our son, I beleive the risks of antibiotics and IVIG are worth taking. The risks of doing nothing, scare me more. If it were just a tic, I don't think I would medicate unless the tic were interfering with his functioning or casusing pain, or emotional issues for him. It's all the other stuff - the tantrums, the nightmares, the inability to copy things from the board in school, his compulsion to look into the sun, his anxiety level...the list goes on.

Can those of you going to DC ask about this study and when it might be published? It just completed, so I'm hoping soon. They followed these pandas kids for 8 years. Also, who actually did this study - it just says NIMH. http://www.clinicaltrials.gov/ct2/show/stu...239?term=PANDAS Thanks!

We love Carlson's Lemon flavor fishoil - we get it at whole food. IT comes in a bottle you keep in the fridge. I probably tried $100 worht of different omega 3s before someone recommend it. I used to mix up a smoothie with it in there, but nowI just put a tsp in lemonade (it flats ot top) - you can't taste fish AT ALL. It just tastes lemony, it is bit oily, but I dont often give my kids lemonade - so they deal with it. I take it that way too. hope it helps.

Lynn, Thank you for sharing the other part of your story with us. My heart goes out to you and him, I hope he decides to take the information you offer him. He is still young. We all of course know about Lauren. Putting your battle on TV with an adolecent girl must have been difficult - but I am not alone when I say thank you for doing this. I just went back and read your update and back story on her. I too have a child that probably had pandas at a younger age, and until he developed a tic, the symptoms, although odd, all fell in to "normal" childhood behaviors. My heart goes out to you and Mary. I'm thinking of you both and wishing your children heathy adulthoods.

Buster - for what it is worth, we go back east to Rhode Island for 2-4 weeks per year. I am a dot in Northern Cal.

ok, now I'm scared ot use stanford....maybe should fly to chicago. The does, the flush, anything else that could have completely screwed up the entire thing?

Yes - I've noticed the same thing when pandas is flaring. Like he has to do a bunch of tics when he wakes, and then he is OK. (At least our version of OK!).

I should have said "benefit from having a mentor" . I don't know why phychologist recommended that for him specifically (couldn't everyone benefit from a mentor?) but MOMwithOCDSon mentioned it in her reply and that was a big benefit from doing the IEP - an adult outside his parents that "got" him, and pandas, to talk to and guide him. I think my ds is at an age and has personality that is somewhat jaded - he doesn't beleive us, and it is difficult for him to take instruction from us - but an outsider he will listen to (much like my husband!) Buster wrote:"The tests isolated that an area known as her orthographic memory (i.e., spatial memory) was not functioning normally. If you use a peg board, she can get a pattern. If you ask her to copy a pattern, she couldn't. It was literally the combination of see, remember, write -- if you removed any of the steps then she could typically do the action. " This is exactly the same thing my son bombed on. The other areas where he had any difficulty were minor, and could be a funtion of the fact that he completely lacks this ability. Does anyone know if this is controlled by the basal ganglia? Yeah...the "researchers". I can't beleive it either. I live a half hour from Stanford University. No one there interested! As matter of fact, at least one has stated he doesn't want referrals because he doesn't want to become "the pandas doctor". (EAMom knows who I'm referring to). I'm probably going ot have to try to get him to do IVIG for ds becasue I think its ridiculous to add a trip to Chicago on top of what is already a very stressful experience. Keep reading to your son - and don't push it too hard - just let him enjoy the stories, he'll get hooked eventually! Enders Game is a little old(High School), but its a great story, some "strong" language - if you've never read it you will love discovering the book together. Benedict Society is one that is completely age approtpriate, but also a good read for young and old. They might be a little advanced for him to read on his own, but you will like the book too so it won't be a chore. Might also try audiobooks - you can download to your ipod and just listen, or read along. We don't do this - but I have friend who's whole family is hooked. Psychologist recommended Inspiration Writing software. He's a good wrtier, but the organization piece is little weak. We haven't tried it yet but it looks interesting. http://www.superkids.com/aweb/pages/review...rat/merge.shtml

Thanks for all this feedback. I will put your advice to good use! One thing ds son's eval mentioned was that he would do better with mentoring style teaching. So, finding an advocate via a 504 plan or IEP might be something to investigate.Using a laptop (I know he will veto alphasmart). I think my son has had pandas for a long time. I think he has developed coping mechanisms that some of your younger kids and sudden-onset kids don't have yet. I'm sure in exacerbation his testing would have been very different too. He was at baseline when we did it. In retrospect, I think he's had since approx age 6. Subclinical symptoms, and his personality is very demanding to begin with, so hard to separate when he was irritable, and when he was just yanking our chains! The november teachers meeting would always be great, they would rave about him...then come the spring meeting and he'd have "issues". they varied. Would would say -"its just a phase"...and he would come through it and it would appear that it was a phase. The puzzle thing is interesting - when he was little - under 5 he was great at puzzels, loved bionicals and legos. And in retrospect I've seen him struggle with things that should have been easy for him - for example last year in class the entire class built a town to scale based upon floor plans they made. He got through it, but had difficulty getting his building to represent what he drew on the floor plan. It didn't match up, and he coldn't see that it didn't. BTW - EAMOM - the doc that said that "pandas shouldn't effect things" - HYSTERICAL! It effects everything. The anxiety alone, over having to copy someting, I now know would be enough to make our kids "bad test -takers" in general. We all know that feeling of freezing up on a test. DS has always excelled in sports, but had poor fine motor. No interest in drawing or writing or coloring or cutting out paper - nothing that would develop those skills. So the there was not a huge deterioration in handwriting skills but there was one noticable thing he did - he would write over an existing letter or number that was already formed. The second time it would be equally as messy (actually it made everyting alot more messy). In exacerbation he did it ALOT - almost every word would have one letter he wrote over again. Now he still does it, maybe one letter sentence. MOMwithOCDSon - My son wasn't a huge reader until 4th grade. And often I'd have to pick a book and read first chapter to him to get him going. I think largely the content of the books that he could read in 2nd grade just couldn't hold his interest. There were a few great books that got him hooked - one of them was "Enders Game" I read some aloud to him, and he would read a couple chapters, and then I'd read to him again. It took awile for him to build his reading stamia. "Benedict Society" the Lightning Theif series, "The Wright Three". He was never a harry potter fan unfortunaely those provided material for my daughter for years. Our librarian suggested allowing him to read under his level for his required stuff (because he would choose books far beneath his capability), and to keep reading aloud to him. Make it enjoable. It was for both of us - and reading should be a no stress enjoyable time. Once I got that (and foudn types of books he enjoyed), he bloomed.

yes - his memory was very good. His spelling was excellent. The test didn't go high enough to accomodate. He never spells anything correctly when he has to wrtie essays.I think his memory is actually getting better - and he has been ususing it to compensate for difficulty he has been having in this area. Like holding numbers in his head instead of writing them down when doing long division. Problem is, the stuff gets more difficult and "show your work" counts for more than 50% of the problems. I think my son could benefit for having access to others notes (judging from the VERY high volume of notes my daughter has in middle school.) she is two years older. But, I don't want him to feel stupid (and he will insist that he is stupid and that we think he is stupid, which is why we are suggesting it.) How did you guys deal with this? EAMOM - if you say a work for you daughter and ask her to spell it verably instead of write it down, does it make a difference? Also - I'm a horrible speller(ALWAYs my lowest grade as a kid), so I don't think it really means anything! It stops being a subject in school at middle school, and they can use the spell check. The interesting thing to me (and the guy that administered the test) was the huge difference in scores. The low score basicaly invalidates the whole IQ test - because it was double the limit of tolerance from one area to another (I think the absolute value was 24 points difference from the next lowest score...ds's was over 40 points different (not out of 100)). It's almost impossible to get in the bottom 2%...if you are in mainstream school, without any obvious special needs. And even though ds did well in the other areas, they are underestimated because without that skill - it brings almost everything down, even though they try to isolate. I'm just trying to figure out how to get him to survive middle school with his self esteem in tact.

I had recent evaluation of son done including IQ testing, personality and learning style, academic testing. took 5 separate meeting (3 days of tests from 1 1/2 - 2 hours each). He was pretty much at baseline when we did them. I decided this was the best time because I'm trying to decided it baseline is "good enough" or if we should do IVIG, even if he doesn't have exacerbations that are as bad as they were. Same reason we did the Cunningham test at baseline. short story is he would be considered 2e. Gifted and learning disabled. There were two VERY interesting scores. He took the test just before he turned 11(middle of 5th grade), and on most of the tests (there are probably 20 all together) he scored very high. 8th grade and high school levels and one college level, on the academic portion for example. I think most of stuff was done verbally which I knew would help his scores - especially in math where he does most of stuff in his head, and he refuses to write stuff down. Those scores weren't that interesting, we know he is smart and I didn't go there to have someone tell me that or give him a label. The tests are good at isolating abilites. OK - the interesting test (he got in the 2% ile) was called "processing speed". It is a hand/eye test that measures spatial and fine motor skills together. He was given apporx 10 symbols (they all had more than one mark to make up the symbol..for example a triangle with a semi colon next to it and a dash inside, but not a triangle alone) and above each symbol was a number - from 1 to 10. For the test he had to match up and copy the symbol that corresponded to the number he was given. He had to do as many as possible in 2 minutes. He went so incredibly slow the moderator said it was like time stood still. she could tell he was very anxious. And there was another test that measures the same thing in a different way- again, low score (not as low as this test). When I think about our kids handwriting deterioration (and math too - since they have to visualize something and then write down the number) I'm thinking bingo - this must be pandas related. At least now I have a better understanding. He comes across as aloof, not caring, rushing through work. Making careless errors on test. Appearing to forget things his teacher knows he has mastered. They recommended he use an alpha smart (which he won't do - hates to be different) and have support with anything that requires copying from the board, as well as note taking (i.e. given written assignments, and copies of other students notes). As well as getting into more advanced classes in his area of strength to keep him challenged and feeling good. He will probably balk at all 3 of those. At least now we know why he refuses to write stuff down and tries to all his math in his head. The assessment also suggested mild ADHD, mild executive function problems (borderline for that). Anyhow - I thought I would share that. I'm certain that it is pandas related. I think we are going to do the IVIG, and if that doesn't help with the issue we will try to get a 504 plan (that is if ds will do the 504 plan!). We may re-do that part of the tests in a year. Anybody else's kids use alphasmart?

LLM- Check out "Race to Nowhere" if you get a chance - I saw a screening of it at our local high school, will air nationwide in September. It's GREAT. do NOT worry about end of year progess stuff. I wouldn't even have him take the test at all - if he is having pandas exacerbation scores are meaningless and will just stress him and you out. I tried to get my son not to take star testing (did you know star and mac tests are optional?) this based on talking to two teachers whom I greatly respect. He took it anyway - didn't want to be different. http://www.racetonowhere.com/

I had recent eval of son done including IQ testing, personality and learning style, academic testing. took 5 separte meeting (3 days of tests from 11/2 - 2 hours each) short story is he would be considered 2e. Gifted and learnig disabled. There were two VERY interesting scores. He took the test just before he turned 11, and on most of the tests (there are probably 20 all together) he scored very high. 8th grade and high school levels and one college level, ont he acadmeic portion for example. I think most of stuff was done verbally which I knew would help him - esspecailly in math where he does most of stuff in his head, and he refuses to write stuff down. Those scores weren't that interesting, we know he is smart and I didn't go there to have somone tell me that or give him a label. OK - the interesting test (he got in the 2% ile) was called "proessing speed". It is a hand/eye test that measures spatial and fine motor skills togther. He was given 10 or so symbols (they all had more than one mark to make up the symbol..for example a triangle with a semi colon next to it and a dash inside, but not a triangle alone) and under each symbol was a corresponding number - from 1 to 10. For the test he had to match up and copy the symbol that corresponded to the number he was given. He had to do as many as possible in 2 minutes. He went so incredible slow the moderator said it was like time stood still. she could tell he was very anxious. And there was another test where he had to do something else that was spatial and then write something - again, low score (not as low as the other test). On tests where he was told - messiness didn't matter, or the response was verbal, he did fine(better than fine actually). When I think about our kids handwriting deterioration (and math too - since they have to visualize something and then write down the number) I'm thinking bingo - this is definatly pandas. They recommended he use an alphasmart (which he won't do - hates to be different) and have support with anything that requires copying from the board, as well as note taking (ie given written assignments, and copies of other students notes). As well as getting into more advaced classes in his area of strenth to keep him challenged and feeling good. He will probably balk at all 3 of those. At least now we know why he refuses to write stuff down and tries to to all his math in his head. The assesment also suggested mild ADHD, mild executive function problems (borderline for that).

All great info. Thank you! No we have not doen the ciruclating (whatever) test yet. Bummer. Didn't know to ask immunologist for that one. Does Dr K always require that or is it something about your ds case that makes him recommend that one?

My son will flare before getting sick. Theory is immune system is doing its job - It sends out antibodies to the virus (keep us healthy) but our immune systems uses somewhat of a shotgun approach - sends out many different kinds of antibodies includes some to strep...so... his pandas systems will get worse for a while. This is much improved on antibiotics, but it still happens. We had tummy trouble first couple weeks on antibiotics - until I figured out when and what to give with. Try not to give the Advil near the antibiotic. We did this and got bright green diarrhea which prompted appointment with gastroenterologist. She said that the Advil was far tougher on the gut than the antibiotics, so use sparingly, with food, and try to give a couple hours apart. We had some stomach aches when we started the azith as well, especially at higher does. I find food helps, and also we separated the dose, gave 250 in morn and 250 in afternoon. The gastro appointment turned out be something we needed to do anyway - she ruled out celiac disease for us (as well as other nasty gut stuff), and another test showed low IGG...which led us to an immunologist. To answer your question back in the thread "do you think that our pandas kids can be cured?". I'd have to say no. I think that a high percentage will go through puberty and their immune systems will cure themselves. I think we can cure one episode. I think that we can protect them and give them the best chance at being in that high percentage with antibiotics, steroids, ivig and pex. They are still susceptible to what set them off in the first place, so I wouldn't call it cured. I think there is a genetic component when coupled with antagonist (strep) the immune system will react the same way as before. So the antibiotics protect them from the antagonist(s). But what I meant was that we need to protect our kids from the stress and pressure of the "achievement culture". I do think that stress can make exacerbations worse. And lower the immune response - leaving them more susceptible to viruses and other illnesses which for our kids can mean pandas symptoms. That's my opinion, so of which is from experience and some is from reading this board for almost a year and anything else I can get my hands on). Your son is only 7 - so you caught it early. There is every reason to believe he will recover, and you will be able to protect him from more exacerbations. And there is NO WAY you caused his pandas, so let that guilt that you contributed to it go. As for the pressure you think you put on him, I've been there, so have many of us. I still have guilt bcs I could only breast feed him a couple months due to reflux..(and I wonder is that messed up his immune system). I have a number of friends with older kids - I learn soooo much from them. In the end it’s all about healthy, happy, productive members of society. Not sending them to MIT or Harvard. I remember when my oldest was going into kindergarten. I STRUGGLED with the decision of whether or not to put her ahead year (she is 3 weeks from the cutoff date, she is very tall, precocious, was reading, most of her little friends were going into 1st grade..) Then I called my friend with 2 kids , 6 and 8 years older than mine. She just laughed and said "you know everyone holds their boys back...do you really want your 14 year old girl in class with 16 year old boys with their drivers licenses?". Decision Made! I hope he is feeling better soon. Kerry

ooops almost forgot to answer azith question. Our ds is 11 years, 95 lbs. 500mg azith 1/day for two weeks, followed by 250 mg maintenance dose- prophylactically. I plan to keep him on that until he is 18, if I can! I'm glad you found out what was going on - and highly encourage you to confer with pandas expert. I am finally going that route after 9 months of doing it on my own (we at least had a doctor giving us antibiotics and a steroid burst)...but we've met with gastroenterologist, psychiatrist, integrated medicine doc, neurologist, immunologist...and of course or pediatrician, who is just starting to get it. This is 9 months with a diagnosis - before that we had several months not knowing what to do. All of them had lots of blood work, except neurologist - he was a complete waste of time and $. Just did cunningham tests to - that is another thing I wish I did earlier. I'll probably have to do more blood work after the consult with Dr K. Hope not, ds is NOT fond of going to the lab! I think the 11 vials that were taken first time went was not the way to start off...I think I could have avoided a lot of frustration and pain for my son by going directly to DR K. Good luck

We live in the heart of silicon valley - where the worlds top engineers and entrepenuers come to compete. There has been an epidemic of teen (and even pre-teen) suicides in several communities in our area. I was lucky enough to see a screening of "Race to Nowhere" which is suppossed to be shown in September on Oprah's new network. Don't miss it. Every parent should see this documentary. Check out the trailer and a little info on the movie at: http://www.racetonowhere.com/ A teacher of ds took an interest in my son before he was diagnosed. In her former life she was a highly accomplished multi-degreed professional. She left that world to become a fourth grade teacher. She is older than me and has two children, early 20s, one of whom had anxiety, OCD, depression from middle school - college years. She still struggels, but is much better. This teacher is a very smart lady and has worked with hundreds of kids and families, and sucessfully raised two very different children. She says I should be greatful for this pandas experience - that it will make me grow as a parent and a person. Not greatful that my son is sick obviously- but greatful that I now know better than to judge another parent, and have empathy that could not possibly have without this experience. Perspecitve. If I had two kids like my older one, I'd never have that. She is very wise. I think we need to be VERY careful with our kids - esspecially the pandas kids - anxiety goes hand in hand with depression. Our society and academic system puts so much stress on them, they don't need any more from us. I'm a very competitve person. So I have to keep myself in check. My kids have their own styles, I respect and support them. And try to keep it all in perspective. You are lucky you got this wake up call when he was 7.

WOW - well done!! Thank you for all your hard work and Vicki too!

Maybe get the CamK II levels while were at it!

Hi Brandy, We have a conference call with Dr K in 2 weeks. I am wondering what he presribes for a burst. I have a scrip from local doc I ahve not filled for 15mg prednisone (?? times per day don't recall...I think 2 or 3) for 5 days. I was thinking of doing it before my phone conference with him ..becasue if we do IVIG we too want to do it in summer and still have a few weeks before school starts. I don't want to do this 5 day burst if he is going to tell me ds has to do one that is his dosage. Thanks - glad to hear you had a good confernce - any words of wisdom for us? Kerry

alot of pandas kids seem to be low on iron - I read this in a previous thread. My son, is low on Ferritin , and although not quite anemic, doc did recommend supplement. this was before pandas diagnosis - when we were trying ot figure out what was wrong. I tried a couple - but he didn't like taste, so we jsut do cereal that has iron now, and I'm glad becasue according to the old posts Dr K ahs noted that many pandas kids are low - but doesn't think they ABSORB it - and maybe accumulating in organs (brain???). I can't remember exactly - you should do a search on iron on the forum. Now ds has ceral with iron in it, and I do think it helps, and I try to make sure he has iron rich foods with vitamin C to aid with absorbsion. Has your ds had a CBC lately? That's probably obvious, but sometimes we are so overwhelmed with all the complex stuff going on that over look the obvious stuff. I hope the spot is nothing, you and ds already have so much to deal with.