melanie

OHHHH thanks I didnt know that it was comming outt please write more when you can

I know theres a thread for OCD but well I like this one .. Dans experienncing alot of repetitive thoughts he cant get out of his head kinds of stuff .Different than ocD right .Yesterday it was toy story . He hasnt seen toy story in years It is very annot=ying for him .Im going to call the MD today any body successfully use a med to help this?Zoloft? we have tried several over the years doesnt do to well with them But we didnt know about PANDAS so .. Melanie

Hi Im rh- too danny had higher bily also but just had to put him in sunlight for a few days, he is also asd I commented on this a while back and got no response .I remember the day I recieved the rogam shot!!! I didnt need it either both me and my husband are rh-(A-) my kids are a- too so . Melanie.

Sorry to hear of this I hope she ok.Praying for you both melanie

Hi spoke with the neuro today and were going to meet with a infectious disease md and decide which antibiotic to go with Penicillin or azith.Hes been on azith for approx 6 months had results but well we did the ivig I think danny may be allergic to Pennicillin I think one of my kids had a reaction I have to call the pediatrician.Any way lets say theres no allergy which ones better post IVIG? Melanie

well its 2 weeks post iv and things are better but not better than last week. Actually there worse than last week.He said to my husband yesterday that the hospital didnt work he still has his ticcs No antibiotics yet either I think hes going to give it to him today I have to call at 10;30AM I see improvement lots but .,. yhe 3 days we had lasy week were amazing Does that mean anything? HELP again .... Melanie

Hi I wanted to know how Pixie is doing ? I havent heard anything.. Melanie

Ok well tics are here again today But Im not stressing cause yesterday there was none so thats good Iguess thats how it works I hope

He did say he would do it again if he sees any positive results so I guess were going to do it again hey its ok Melanie

Good news!!!

Danny was on antibiotics for about 6 months pre IVIG azith we did see some results but that md ran tests and said he didnt have pandas well that was 3 or 4 Mds ago.I think hes allergic to penicillin had a rash when he was little 3or 4 Ill call monday am things are still getting betterhere so Im happy its sat so we will spend the day analizing him Ill write more later Melanie

Hi I want to know how your child is doing Is everything ok Please post Melanie

No and I asked why and he says he dosent want him on it right now.I dont know why .I did add a 200mgadvil daily myself so .Hes doing good in school (special ed school) doing his work Im ok I am seeing some good results and am happy now, If he is exposed to strep will it ruin everything IVIG? Melanie Yes, if he gets strep again it may ruin everything. Even the Swedo kids (in the ivig/pex study) were on prophylactic antibiotics. Pretty much everyone stays on prophylatic abs post IVIG..."until PANDAS is a distant memory" says Dr. Latimer. Well why didnt he do that?Could it be his age? He did say if he see that this works he was going to do it again .My appointment with him isnt untill oCT 12TH Ill call monday am.what should I say? Melanie

No and I asked why and he says he dosent want him on it right now.I dont know why .I did add a 200mgadvil daily myself so .Hes doing good in school (special ed school) doing his work Im ok I am seeing some good results and am happy now, If he is exposed to strep will it ruin everything IVIG? Melanie

Super-de-duper, Melanie!! We should be off to Chicago for (insurance approved!) IVIG in the next month. Waiting for them to find a date for us. Dawn Hi Thanks ,Ill keep posting elizabeth and keith I see good and also different (makes sence) Dawn ,good luck and I LOVE THIS FORUM!!! melanie

Oh, please understand that I am no way encouraging you to do the vaccine. My daughter was able to get insurance approval for IVIG based on her titer results but she was NOT vaccinated with the Pneumovax. She received Prevnar from age 2-3 and her immuno did not feel she needed to be revaxed (she's now 7). So, I'm wondering if you can find a doctor to dx him with CVID based on those original results and try for insurance approval. Hi all! We just rec'd word that we are approved through BCBS (Iowa) for IVIG with Dr. K. Waitng to hear a date. This was a surprise. Unfortunately, we have had to go out of network, so when everything is said & done, we are guessing 50% will be what we will end up paying. Every code he gave us flew. 279.04 autoimmune disease NOS- I am pretty sure's the dx. My husband had all the bazillion codes! Hoping others get this good news, too. Dawn Dawn, That's wonderful! Blue Cross seems to be pretty good about this. Even 50% is a lot of money. Thanks for sharing the code. Best of luck with the IVIG! I have BCBS too they covered us i dont know what the md dxed for insurance

Ok I think Im seeing some good stuff post iVIG!!!Back at scholl and doing math !1He hasnt done math in a year.Hes using a calculator but.. hey I dont care HES DOING MATH!!Also hes not hearing me stammer as much I can say dan dan dan and nothing no tic at dinner we ate without any tic OMG!! I dont want to look to deeply its only a week but Oh he also doesnt seem so pissed off all of the time keep the prayer going Melanie

Someone probably told you to try magnesium that worked like a charm for eye tics.

So does that study mean that the tourettes 14-? worked or it didnt help at all .Dannys 15 so Im interested.If you can link that study i would be greatful Melanie

Melanie- I'll reply to the what medicines work question. Our experience and the experience of many others is that it is difficult to find a drug that helps our PANDAS kids. We have had our son on Abilify--quit working. Bombed. SeroquelXR--bombed. Namenda --saw some positive things with attention/eye contact, which weren't big issues in the scope of things. Dr. K has told us that anti-psychs don't generally work. We are currently on Risperdal (1mg 2x/day). We asked about Risperdal and if it tended to backfire in PANDAS kids. His answer was: "I haven't seen it backfire, and I've yet to see it work." Our experience in the 2 months our son has been on it has been similar to yours. SSRI's backfired on us as well. This is pretty common, too. Too much dopamine and too little seratonin, that gets depleted even more with the drugs, is how I've understood it. An antibody of some sort may be signaling the neuronal cells, activating CaM Kinase II within the cell, signaling it to release Dopamine, thereby producing PANDAS symptoms, per Dr. C. Our son has a difficult case of PANDAS due to the number of years he went undiagnosed. We are going to give IVIG a shot. It is being used in soooo many different conditions (off label) with good results. We know we have no guarantees, but we are going to try. Maybe I didn't help, but I thought I'd put in my two cents. I've read the forum for a while and am new to posting. Dawn Thanks dawn How old is your chilld ? Sounds like my story

I havent seen anything good or bad as of yet its 1 week tomorrow snce we completed the IVIG treatment so I know it takes more time I just want tosee something GOOD!!!

Hi nothing at all yet I know it takes time but thanks

Ok so I get that tourettes is a basil ganglia (BG)issue ..and PANDAS is I guess swelling of the BG? So what medications help the BG ?Just antipsys? I cant help but read .I know the iVIG is soposed to help heal the BG but Im not sure In our case it will so Im looking ahead,Danny is on risperdal and the 1st 2 weeks were amazing but not really working well anymore . Melanie

I truly understand the isolation of the hospital,the worry ,will this ever work and the not so great staff who could care less about sleeping at night.Our nurse kept comming in to get gloves she stored in my sons room.OMG!!How many days do you have left ,I kept saying Ive done 2 only one left.Movies& laptops were helpfull Soon you will be home and things will get better. I understand and so does sooo many others here. If it wasnt for this site I would have lost it a long time ago. Melanie

He wants to see us in 4 weeks well 3 weeks now says if we see anything he will do it again Hes not the warm fuzzy md .Do you really think maybe this week we will see something? Melanie