SSS

By the way, she just woke up, cannot get out of bed by herself, she requires me, will just yell or vocal tic eh, eh, eh, until I come and work with her to get out of bed, and is already angry. This is a common thing. Our progress was she could get out of bed, open her door, and sit at the end of the hallway, knocking, for me to come. I think my daughter is very, very sick. Just...Wow. Thank you again, all, so much, for being here. Sarah

I think I really love you guys here. I have been so ALONE with this forever, it feels like (preaching to the choir here, right) We work w/ a DAN who treats PANDAS, does IVIG. We've been working together for 3ish months now, just FINALLY put together PANDAS. I am going to try and work with him first w/our PANDAS, because we have established a relationship- I was going to wait for my CAM test to come back (about 7 days more, dying in the meanwhile, ha ha) to schedule my next Skype appt. with him (he is So. CA. I am Northern CA, not bay area) Maybe our next step will be steriod. I'm happy to say dd5 eats well- quality proteins, good nutrition- we've been GFCFSF for 1 1/2 years, probiotics 2x a day because of the antibx., and diflucan 1x a day... Yes, I'm loving Motrin (dye free, of course) and I see it helps some, but as you all know, it's not the magic to stop it all... I read on here (way back) someone tried the 'Edgar! stop what you are doing!' while in a rage episode, to distract them, make Edgar the bad guy, tell him to stop...it actually kind of worked, we put 'Edgar' in the trash can, but she said 'he is coming back out' Wondering if I am giving her multiple personality disorder now, lol. Not really lol here, I am trying hard to hold it together (and fighting/having this 'virus' in our house) Sarah & Samantha 5

Hi- Waiting for our Cam results- we work w/a DAN! who gave us Omnicef, tried for 7 days, did not see 'enough' asked for Azith., now on day 9 of Azith. Beginning Azith, pretty amazing stuff- then a virus came through here last couple of days, now have more breakthrough rages (can't control body, spitting, name calling) Her Kindergarten class is a horrific place of illnesses- and my dd5 has not been 'sick' all year...(I think it's all been going to her brain?) Looking back on our history, she was exposed to an active strep infection as an infant, then had abnormal head growth (inflammation) it was brushed off, then infant unexplained fevers, hospital tests, could not find cause of fevers... exposed again to strep at 2 1/2, treated w/typical antbx. treatment- she stopped talking and cried straight for a week w/that strep. Never had autism dx- but sensory, social phobia. She has gut issues. No-one has been able to help us- which is why I finally went to DAN! Dr. 3 months ago. I think she has been dealing with this for a long time. I swear I have read every post on this board, and it is US. The OCD, seperation anxiety, off and on, rages can't control... I am having a really hard time waiting here...if I get the test back positive, I can then go to our regular insurance Docs and fight for help--paying a fortune through DAN! but he GETS it. I am feeling scared and rather spun out. Perhaps I should stop reading EVERYTHING, but I can't seem to help myself. Thanks for letting me share... Sarah & Samantha 5

Oh, sorry, I wasn't trying to imply it is not a great book (very popular!) Just the absolute irony in our story-----

The irony in my life right now is unbelievable. Oh, I am very familiar with this book, but I had NO idea it had to do with PANDAS. This is the book my dd5 got read to in preschool last year, and FREAKED. For 3 long months, she obsessed, with horried OCD thoughts turning into fears that ruled her world, that stripes were going to come onto her, and they would never leave. It literally tormented her. We are still afraid to speak of anything striped in this house. She started kindergarten this year. Saw the teacher had the 'Stripe' book- on her own (yea) she whispered to her K teacher 'Could you please remove that book?? It frightens me!' (And wonderful teacher did) I am awaiting our CAM results, day 8 of first time Azith., and now you are telling me 'The Case of Stripes' book is about PANDAS?? WHOAAAAAAA. Sarah & Samantha 5

Wow! Very astute 5 year old. Mine is 5, too. We are new, but would love to have that awareness happen---

Hi Mom Love :-) Yes, I get all of her scripts from a nearby compounding pharmacy, since we are GFCFSF and dye free for a few years now...nope, not cheap! Our Dr. sent in a script w/2 refills- he gave me a dose of 200 mg a day, but, ooops, I've been giving 250 mg a day -- since this is our first time out, I'm thinking--dd5 weighs 40 pounds. So, I am going to keep her on it (get the refills without a break in dose) Sounds like it should all last me 25-30 days...soon as the Cam test comes back (first part yes or no) I am going to call our Dr. for our phone appt. to go over, let him know how we have been doing on Azith. I guess I'll see what he thinks about continuing on the Azith. past this script/refill and for how long...if we are positive, of course...

Hi- There is a test from Great Plains Labratory that is called the OAT test- it is a simple urine test (they send you the kit, you send back the urine) and it will give you a very good breakdown of yeast and bacteria in the gut- and it also tells about some vitamin status- it does require a Dr. signature, unless you click on the MyMedLab.com link, then it will be sent to you without needing a Dr. signature, for a little bit more money. My dd5 has a leaky gut- we've been GFCFSF for a few years, and battle yeast--although we have made progress- also run to constipation so I always have to watch that, make sure she goes 1x a day bowel- I am giving probiotics 2x a day, mixed in applesauce, and using an antifungal- but she is in 1/2 day K, so it's easier...

It went better than I expected- we got our regular tech at labcorp., who did the whole thing, including the packing/fed ex part. I'm not sure how I feel- if it's no, I literally feel like cannot keep trying to figure this child's issues out (I know so many of you have spent so many more years suffering than we have) I think it's going to be yes, based on our day 4 of Azith. and the results we are seeing- higher level of maturity, we've had no rages in the past 4 days, and better control of her body. Thanks to everyone here, I have spent countless hours reading back posts and learning-- Sarah & Samantha age 5

mom love, here is a link to Enhansa, explaining it http://www.ourkidsasd.com/products/2510%7CEnhansa%20(enhanced%20absorption%20curcumin)-Lee%20Silsby We also have constipation issues, and I've found that giving 1 capsule of Oxy Powder a night makes her regular. I think I got very lucky to get in with Dr. Kartzinel (or maybe God got tired of hearing from me) but I'll tell you...my retirement account's going down fast :-/ My regular insurance Dr.'s---good grief. I just didn't have it in me anymore to fight. Dr. Jerry is cash only. I committed myself to 1 year of working with him, and then, I told myself, I give up. I am really praying this is the piece to my dd5. Like it or not.

Listen, I'm not an expert, very new to PANDAS, but I've been doing bio-med for awhile--- I agree with the Dr. why so much charcoal? Charcoal will wipe out EVERYTHING in the body- I don't use charcoal, never have---I know you child is older, but if large die off, epsom salt baths are very good... I space out my antibx., antifungal, and probiotics all by at least 2 hours- 3 hours. I don't give any of those 3 at the same time. I do give vitamins throughout (not excessively) And, I try and make sure my dd5 is eating well throughout the day, and her bowels are moving. Maybe try giving up the charcol for a week, see how it goes? (Maybe the medications aren't able to take full affect because of all the charcoal?) Also, charcoal can be constipating, and the bowels need to keep moving (at least 1x a day) Just my .02 cents!! Hang in there---(I see your posts on the yahoo group, too, I know it's really hard for you right now) Sarah

This is exactly what I was thinking about- that I should break up the Omnicef into 2x a day, 150 mg each, instead of 1x a day, 300 mg. I am going to try that tomorrow. I looked the 1/2 life up, I believe it said 12 hours--so yeah. I am dying to try the Zithro., patience is not my long suit. It's in the afternoon (after 1/2 day K) she is WILD/aggressive. Quiet and follows through at school. Loses it when I pick her up. Not every day- but a lot. I am seeing some things (just day 5 now) subtle- yesterday, no longer had to wear 2-3 shirts at one time- she just put 1 on, I about fell over. I am recording some 'nice' hours--- nicer to younger sister. Not coming into our bed last 2 nights. Says 'I'm tired' throughout the day more than I've heard...but getting good nights sleep (I also use melatonin) About the Enhansa- (I had been thinking for the last year + all her behaviors/issues were do to a leaky gut/vaccinations- which she had/probably still has, we are GFCFSF, she eats well now, proteins) so I tried Enhansa because I was looking for more healing- it reduced her inflammation- much better/regular bowel movements, she seemed more cognitive, talking more (she has no speech issues)- then at full dose, I added a push of vitamin C, and bumps looking like chicken pox appeared (not scratchy tho, none on face) but moved down her body for 3-4 weeks- It is a high phenol content (curcumin) and that made her hyper- yeah, couldn't deal with more hyper---and after the rash was through, I pulled her off of it--- By the way, not everyone has 'phenol' problems- I tried to combat the phenol with a No Phenol enzyme tablet, still, too hyper. Sarah

Thanks- I'm working w/ Dr. Jerry Kartzinel- I'm in North. CA he is in So. CA-- We've been working together for just 2 months- I really, really like him- he says a percentage of his patients are PANDAS, and he communicates with 'highly respected/informed' PANDAS Dr.'s. We just reached the conclusion of very possible PANDAS 2 weeks ago, after much, much studying by me, and pages of notes. Hence, the trial of Omnicef. I am waiting for the Cunningham test to be sent to me... Have not done a IgM on my dd5- have an older panel of IgG subclasses-- I have been trying to figure out this girl for years ;-) What a ride. I will bring up the Myco. Pneum. test up to him when we talk again in a few weeks--thank you--

Thank you so much, everyone, it means a lot. Sarah

Thank you---ah, yes, I forgot to mention our seperation anxiety, too: HUGE. I asked our DAN! about Azith. and he said he wanted to try the Omnicef first- I will try and be patient------thanks again.

Hello, I have a dd5, whom I highly suspect is PANDAS. I have ordered the Cunningham test, am working w/ a DAN! Dr. I'll spare you all the details, but her background fits- OCD episodes to the max. Wax and wane with it. Obsessive thoughts have ruled her at times- to the point of non functioning. Clothing OCD- unbelievable. Never had an autism DX, but had a Sensory Processing dx (10 months of OT) and a 'social phobia' dx- started bio-med (diet, supplements) about 1 1/2 years ago. Vocal tics come and go. We are on day 4 of Omnicef, 300 mg, 1x a day. I am taking copious notes. Advil makes a difference to this child. I know she has inflammation- we did Enhansa before (curcumin) it was our biggest 'wow' also pulled a virus out of her body with it(month long rash)we went off it after that--- I'm impatient. I'm worn out. She holds it together well in 1/2 day Kindergarten (but perfectionism, will cry if she feels even slightly critized) Home, she has some very wicked spells(anger, lashing out, calling names, hitting, spitting) I am giving probiotics 2x a day, and Diflucan for yeast 1x a day (she is a yeasty girl to begin with) I am thinking of keeping on this Omnicef for 20 days (I have studied, and read 20 days test is warranted for antibx to really 'see') and then ask for Azyth. Can anybody give me any feedback? It's a long road, right? I'm trying to figure out if it is indeed PANDAS, or just OCD. Strep titers pulled last Spring, of course, not high. I know 50% are in the normal range. I'd love anything anyone has to say. I've been reading and reading and reading. Thanks for being here. Sarah