norcalmom

Our results almost same as fcfxr. Only one out of range was anti-lysoganglioside (at 640..exact same as fxcfxr) There is an old thread on this (2 months ago?) where alot of people poste their cunningham test results. ds camK II was 176 We did draw when NOT in exacerbation.

I'm sorry. I know how you feel. I had to tell my ds that we are flying to Chicago and he is getting ivig next week. He is not in exacerbation but it still sent him into a rage, crying, throwig (pillows thank god) knocked a chair over. He later apologized and talked about how scared he is of the needle and wanted to know if ther would be any side effects and asked to look at pictures of it on google images. If he were in exacerbation that second part would not happen. I'm terrified of "turning back the pages" to a darker place than where we are now. And the rage and blame is the worst. Its like they blame us for their disease, and we just have to take it. It is VERY stressful. I've been getting heart palpatations alot lately, part is living on eggshells, part is worry over the ivig. I have no suggestions beyond what I'm sure you are already doing, just wanted you to know you aren't alone, and to take care of yourself!

Interesting. Has anyone started to test pandas blood for TLR activation? So, CamK II activation in additon to a TLR test may be enough to verify pandas? (or this may jsut be furthur proof that camK II test is valid pandas test) Any herbs or supplements that effect the TLR?

ds is getting ivig in two weeks and this is scaring the bejessus out of me. How long did the new tics last? How can I convincingly tell my son that this treatment will help him when I know that he could have worse symtoms for weeks afterward...I'm preparing for him ot rage at me when this all happens. Hopefully it won't but preparing for the worst.

Hi Danddd- No. We did not do the prednisone burst. My son is 11 years old, and Dr K said that at his age it has mixed results. also, didn't have to do the circulating complexes test - Perhaps there is something about some of the kids existing blood work that is having him ask for that test. I did ask him if we needed that test or mycoplasma - and he said no. We had already done an immunity panel which included IgG, IgA, IgM and the 4 sublasses - I know you absolutely need that before ivig. He asked for it after we scheduled our appointment with him, and reminded him he already had it in his package of my son't medical files we send before our phone conference. We wanted to schedule the ivig w/him during our conference - but he didn't want to do that. He wanted us to think about it, and to try to get someone to do it locally .he said his talents are in diagnosing the disease, and that administering the ivig is something that can be done anywhere and he would consult w/immunologist in california to follow his protocal if we could find one that would do it. We spent several days looking and couldn't find any one. although there is a doctor in petaluma CA that will start treating pandas kids in mid to late august - they aren't totally set up yet, so weren't in position to schedule it. So, we talked with him on 14th, he confirmed the diagnosis and then we looked for immunologists in out area for a week. We emailed him on 20th to say we couldn't find anyone, and on weds he emailed back and said he could do it for us Aug 5 and 6th. Either we got lucky and there was a cancellation or he is squeezing us in because I also told him that we have a vacation planned aug 8-24th and were desperate to do it before that.

Thank you all so much!! We are scheduled for 5th and 6th of August. Mama2Alex - looks like we will miss each other. Bummer. Anyone else going to be there then? All great feedback. Thank you for sharing your stories. As horrible (and scary) as it might be to be alone in the hotel room, I think I will feel more comfortable being next to the surgical center and in the same state as Dr K than several states away. Sounds like it could be the longest day of my life wherever it happens (tapiash's expereince - yikes!) - at least I'm now prepared for what it could be. I think we will plan to stay for the extra day, but fly Southwest so I can leave earlier or later if I need to, and I might make sure I can get a one bedroom suite or something that day if I need a little more space the next day, a place that has room service, and bring plenty to do for the 7 hours it may take. Got it!

We have everything we need for a book right here. We've all published our stories, if you follow the treads back for several years, you get a complete picture of many of the kids stories - good and bad. I think it would be compelling and unique if editted correctly. There are definatley some interesting characters, along with the kids pandas stories. Just an idea - I'm no writer but I read (alot) and I know what makes good reading...and I spend alot of time searching through the archives of this board (as we all do)! Admit it - you start looking for one thing and you get sucked into old threads that have little to do with your situation becuase they are so interesting.

Hi all, We finally had our call with Dr K and are scheduled for ivig in Chicago. I am making travel arrangements. My biggest question is what day should I depart from Chicago? The day after the ivig or two days after? I'd hate to drag a vomiting kid with a splitting headache through car rental returns and security, not to mention a 4 hour flight. Does anyone have a recommendation on where to stay? We have office visit on weds, ivig on thurs and friday..then depart on either saturday or sunday (depending on your input). I assume his office and the ivig site are near each other? My husband will stay behind with our daughter, so I am on my own with ds. Any input appreciated. I'm quite anxious about the whole thing. Norcalmom ps - on top of this we aren't actually going straight home..we are going from Chicago to two weeks "vacation". It was planned months ago. We are visiting family so it is OK - but I'm really terrified of the "turning back pages". I am preparing for the worse and setting expectaions that ds will be very irritatble and sick from his treatment.

We have ivig scheduled w/dr K first week in August. He said we need - IgG, IgA, IgM and the IGG subclasses 1-4.

I know it is a symptom of Syndeham's Chorea/St Vitus Dance (so probably severe pandas cases as well). I am wondering if you had cunningham's test done? Did she have a very high CamKinase II?

I think ds is fine left/right. And large motor skills are exceptional - he plays baseball, and other sports very well. The only thing of note in that area is that he is almost ambidextros (sp?). He didn't have a hand selection until after two.I kept putting things in his right hand so he would pick one as I recall. He is right handed. He is "goofy-footed" on snowboard and skateborad, and is left footed in soccer. He can switch hit in baseball. His fine motor skills are poor. He doesn't have an interest. So, its hard to tell how much of it is pandas. Handwrtiting, drawing - does as little as possible. I can't say that I can tell they are dramatically improved when not in exacerbation...they're pretty bad all the time.According to recent assessment in bottom 2% on a test called "processing speed" where he had to match a symbol to a number and copy the symbol (they were fairly complex, not like a tirangle or circle). This is measureing where the two skills come togehter - spatial thinging and fine motor. He is above average on conceptual thinging and I know he thinks about things in 3-D well (far beyond his years) but something about having to draw pictures, symbols or even numbers to dexcribe visual stuff stuff he cannot do. He can do it verbally very well. I CAN tell you that the first 3 months when he got put on antibiotics he got an interest in drawing complex cartoon figures (mostly Sonic the Hedgehog) and he blew me a way. He was drawing like never before - he would spend hours focused on drawing, and they were very good. that went away over past few months.

Any word on this 8 year study on OCD and the pandas subgroup out of CD folks? I can't seem to find out who did this study, but it just completed (early) making me think someone might be presenting findings in DC. http://www.clinicaltrials.gov/ct2/show/stu...239?term=PANDAS _________________________________________________________________________________________________ Characterization of Childhood-Onset Obsessive-Compulsive Disorder Official Title: The Characterization of Childhood Onset Obsessive Compulsive Disorder and the PANDAS Subgroup This study has been completed. First Received: August 22, 2002 Last Updated: May 19, 2010 History of Changes Sponsor: National Institute of Mental Health (NIMH) Information provided by: National Institutes of Health Clinical Center (CC) ClinicalTrials.gov Identifier: NCT00044239 Purpose The purpose of this study is to learn more about Obsessive-compulsive Disorder (OCD) in children. OCD usually has a slow onset, and symptoms that may remain at a stable level over time. A subset of children with OCD has a sudden onset and symptoms that fluctuate in severity over time. This study will also compare healthy children to those with OCD. This is an observational study; children who participate will not receive any new or experimental therapies. OCD affects nearly 1% of the pediatric population. The symptoms of this illness can interrupt development, causing significant psychological distress and producing life-long impairments in social, academic, and occupational functioning. A subgroup of pediatric OCD has been designated by the acronym PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections). This type of OCD is characterized by sudden symptom onset and a relapsing-remitting course of illness; exacerbation of symptoms occurs with scarlet fever or strep. throat infections. This study will identify factors that distinguish children with PANDAS OCD from children with non-PANDAS OCD, and will compare both groups to healthy children. Children with OCD and their parents are screened with interviews and a review of the child's medical records. Participants have an initial evaluation that includes a psychiatric, physical and neuromotor exam, neuropsychological testing, psychological interviews, and a blood test. Structural magnetic resonance imaging (MRS) scans of the brain are also obtained. The MRS scan does not use radiation. After the initial evaluation, children with OCD have follow-up visits every 6 weeks for 12 to 24 months. They are seen yearly for 8 years after the study. If they have a significant improvement or worsening of their symptoms, they are asked to make a maximum of two extra visits. Parents of OCD patients are called four times a year to discuss any changes in the child's condition between yearly visits. All participants have a 1-year follow-up visit upon study completion. Condition Obsessive-Compulsive Disorder Study Type: Observational Official Title: The Characterization of Childhood Onset Obsessive Compulsive Disorder and the PANDAS Subgroup

Thanks SF Mom. I left a message for them on Friday. I spoke with one person at office who said that they aren't set up yet. They had plans for the infusion center to be up in August, but according to person that answered the phone, they don't have medication or infusion nurses lined up and she doesn't know when they will be set up and taking appointments. I think my son would probably be their first patient, which makes me a little nervous to say the least. I would do it - if I met with them and felt OK with everything - someone has to be first if we are going to have a pandas doc in norcal, but doesn't sound like they are going to be ready before Sept. Will find out more on Monday.

I'm jealous. Wish I could be there. We had our conference all with Dr K on Wednesday and he mentioned that they there is no pandas/pitand difference - it is all the same thing and that there would be some news on that (maybe a new name and description for the disorder?) coming out of DC meeting. Dr K confirmed we are ready for IVIG, no more tests or steroids needed...Just a willing immunologist which seems we will need to fly to Chicago for. He prefers we do it locally, but after 2 days on the phone with docs trying ot find an immunologist that will treat pandas - or can even recommend one that can ("I don't treat pandas, and I don't know of anyone that does...maybe you should call the neurology dept at Stanford..."....maybe you can try infectious disease at UCSF?"...Mayeb you could try doc X (that would be the doc that sent us to neurology at Stanford). Our best hope is a letter from our phychiatrist to try to get us into Doc Lewis (who we know has done at least one pandas IVIG form this board). He doesn't even have any appointments til Sept. We want is done ASAP..we've been waiting to get to this point for a year. Otherwise its on a plane to Chicago to see DR K. Why won't anyone treat our kids on the West Coast?

our pychiatrist gave us scrip for lydocaine - its great - put it on 30-45 minutes before the draw it will numb the area. The tube was $35, and will probably last us a lifetime. Makes it soooo much easier when they know it will not hurt. and they will know this - because they can pinch their own arm and not feel a thing.

That is FABULOUS! I'm so happy for you. Thank you for posting this story!

Brandy- Thanking of you. Please let us know how it goes. My heart goes out that you can't be there. He will do fine, sounds like he is in good hands, and maybe without you there may even do alittle better (mine seems to use me in his rituals and demands so he is less stressed when I'm not there - becuase no OCD). Good luck with your new job too!

Thank you Buster! I couldn't find any info on why ds's CD8 might be low (maybe the azith?). All the stuff I found talks about low CD4, and a low cd4 to cd8 ratios (ours is opposite, CD4 normal, CD8 low)..but nothing I found even mentions low CD8. -Kerry

That was great - Just listened to Dr. K. interview. We have our phone conference w/dr K tomorrow too.

My son is simialar, but different. Its like he has the first part of OCD, but not a fully developed rituatal around it, combined with inflexibility in his thinking - he gets stuck on something he wants and will badger the heck out of us until he gets it, or melts down. Silly stuff. And he cannot accept a rational answer. He will try to get us to commit to things even if they are a year from now - he'll start with "later" work to "tomorrow" then its "when I'm 12" etc...I dunno what it is. We just thought he was a tough negotiator and would become a lawyer when he was younger and do this - but it has taken on a life of its own and now involves the melt downs and irrationality. Its maddening. I try to just answer him (uaually I will answer once or twice), and after that I keep telling him that I already answered him, not matter how many different ways he trys to come at the same question. Usually I try to accomodate the request, to avoid the melt down, but I always have to think very carefully about everything before I answer him, becasue god forbid, if I say yes to somehting and then for some reason we can't do it, all $%^ breaks loose. If I cannot commit to somehting because I can't predict our day, I will tell him he can ask me again at (whatever time) I will have a better idea of knowing. If he keeps beadgering before that time, soemtimes I will give a consequence or tell him the answer right now is no. I feel a little bit of is like OCD control - my son involves me in his OCD - its like a control thing - and this is similar, but less defined than what his other behaviors are.

Thanks Jodi- that was a good site. The ones I found really talked exclusively about HIV.

With family, there's always some background or hidden agenda that goes on..but on the surface I would say that in general, when you are invited to a dinner that someone else has planned and already sent out invitation for to a large group - you just gotta "swallow it". She probably thought you were being rude to ask to change it. There is always someone in the group who will be unhappy - and unfortunaley since you choose to be a vegetarian, and you are gluten free, that's usually going to be you. This will probably continue to happen. I'd say just set expectations for any outing to a restaurant very low...and if it turns out that there is something better - great! I would just eat before, and order a plain baked potatao and side salad (bring your own dressing if you need to) and not make a big deal out it. Maybe they willhave rice and beans? (I worry with all the restrictions on your diet that you aren't getting enough protein, minerals and viatmins - I think that pandas stresses the body so much it needs extra, and sometime symtoms aren't directly pandas, but rather result of low zinc or iron that was caused by the pandas) Also - with my son, I am involved in his OCD. And if I dont' cooperate, he takes it as an attack on him. He sees me as being completely insentive to his needs, when in reality our entire household revolves around him. He's younger than you, but you may be having feelings of persecution due to pandas (as well as an insentivie family!). Good luck and don't let it ruin your evening. Sit away from your aunt!

I'm just getting ready for our conference call with Dr K on wednesday. Immuno work up just came back. DS has low CD8 % positive - 16 (range 17-35%) so not that low. Also high CD4/cd8 ratio 3.08 (1.0-2.8). These percentages are off do to low, but in range Absolute CD8 count of 307 (300-900) also low total IGG 699 (821-1835) and subclass IGG 1 low 386 (423-1080) These amounts don't look too far out of range to me. I'd like 'em to be just enough out of range to qualify for insurance coverage of IVIG , but doens't look like it, although I have no idea if a small delta is significant or not. Also not much information out there on CD8. He's pretty heathly if you take pandas out of the picture. No allergies, no more upper resperatory infections that the average kids (4? year), minor cough/colds that resolve on own. But what is CD8?

Anti-Lysoganglioside 2 hours patient 640 normal range 80-320 normal mean 147 Anti-Tubulin 2 hours patient 500 normal range 250-1000 normal mean 609 Anti-Dopamine 1 2 hours patient 1000 normal range 500-2000 normal mean 1056 Anti-Dopamine 2 2 hours patient 4000 normal range 2000-16000 normal mean 6000 CamK II 176 Not in exacerbation when blood drawn.

we had one instance of FLORECENT green diareah - which is what prompted me to get appointment with gastroenterologist. It was nothing, an ddidn't happen again, but I htink was due to giving bothe a liquid gel cap of Advil at aroudn the same time as azith. After that I began to space it out. And got rid of the liquid gels - we use the tabs, but VERY sparingly, only when really needed. Gastro said advil worse than the antibiotics...and beleive me she was not happy about long term use of those either (not a pandas beleiver I found out...). My son does better with food for everything. I usually give him one azith in morn on empty stomach, followed by breakfast - usually within 15-30 minutes. Azith suppossed to be more effective given on empty, but his stomach doesn't like that so I just give the azith a little head start. If I am going to give advil, I usually wait until really needed. It only lasts for 4? hours, and I don't give more than one perday so usually I give before something big if he is having little exacerbation or it is stressful event. And always give advil with some food and lots of water. Hope you can find a system that works for you little one.