Pudgeo

P.S> they also wanted my son to go to counseling etc..I feel like the traditional Dr's like to pass the buck..I felt like the Dr's didn't know what to do with me so they would pass me to someone else!

Welcome to my world! My 10 yr old son has PANDAS..He had a fever 17 months ago and totally changed. We went around and around for a year with Kaiser my HMO, they couldn't figure out what was wrong..his symptoms have waxed & waned alot. I got so fed up with Kaiser that I saw private Dr who tested him and his antibodies were off the charts! Now that we finally know what is wrong I am finding it's not soo easy to fix! 1. you need to find a Dr willing to think outside the box! you will probably have to pay to see a DAN! Dr or you need to find some Dr who will run a PANDAS/OCD panel on him. ALot of tradional Dr don't believe that PANDAS is a diagnosis. 2. Did anyone ever test your son for strep or ASO titer??? 3. If you wait for PANDAS to clear up on it's own you could be waiting years! 4. Dr's have different protocals for PANDAS...anti-biotics/IVIG..... My son has had one IVIG and we are supposed to get another next week. Kaiser said they would do 4 for me... ALso I am giving him a ton of supplements/ LDN cream and nothing is helping! He is full of OCD & spacey right now. I have seen a reduction in his vocal and hand tics this month. There's a lot of parents who have had success getting rid of PANDAS..if you search through the old posts here there's alot of info! Sarah

I looked again and the Ebay store is called California Scooters trikes wagons..My son got the low rider trike and it's very cool with the flames on the seat..all the neighborhood kids want to ride it!! I found with my son I can never force him to do anything (like ride a 2 wheeler) so that's why I got this bike! Sarah

Hi Michelle, I know how you feel..My son is just scared of falling off his bike. So 2 years ago I bought him a bike from an Ebay company called California scooters..they make big wheels for bigger kids. My son loves his because it's low to the ground and very cool looking. He has no desire to ride a 2 wheeler andI'm not going to push it until he's ready or wants to learn. He has never liked to climb up high either..Sarah

I had a phone consult with Dr. K...His protocal for PANDAS is augmentin daily for 3 months (for my son 600mg a day) and IVIG. He said because my son was older(10) he would need at least 3-4 IVIG to work. Also you need to be onl lowdose augmentin for at least a year..He is in Chicago and a phone consult was $300. I told him if my son isn't showing improvement soo I may fly out to see him! Sarah

Hello & Welcome.. Personally ( I don't know if others will feel this way) I would go to a naturo-path Dr or DAN! bio-medical Dr and have him tested to see if he has food sensitivities or if there is some trigger for his tics & behavior issues. My son was given about 15 different meds for anxiety by kaiser and he kept getting worse and it was only when I took him to a private Dr was it finally found that he has PANDAS! SO now my Dr's at Kaiser are listening instead of just prescribing meds. ALso I knew there had to be a reason for the change in my son and none of the Kaiser Dr seem too concerned about getting to the ROOT of why my son was having problems... So I guess I would say if your looking for your pedi neuro to help..all they will do is prescribe more meds!(mine did) The tests Kaiser ran on my son all said he was FINE..so when I paid for private testing..wow..alot of stuff came up! huge immune issues to name one..I guess the HMO"s do the cheapest test possible. Good Luck, Sarah

HI, Thanks for checking in..He is doing a tiny bit better.. I started chelation on my own..using Cutlers protocal and the improvement may be from that..My theory is he has PANDAS because he is full of metals which caused his immune system to fall apart.So I did one round and will do another next week for 3 days.. Also we added LDN, inositol and he was low in lithium so I added that.. He is supposed to get another IVIG July 10 and I am hoping we can get him back! I saw a lot less hand & vocal tics today.. My Dr is keeping azith until in her back pocket until Aug if nothing is better by then! Basically I am worried my son will loose his school placement if he doesn't get better! Thanks, Sarah

Also if you check out www.webpediatrics.com the Dr specializes in PANDAS and he outlines alot of the criteria for PANDAS.

The lady whose son recovered from PANDAS sent me an email out lining his dosage..He started with 250mg for 10 days/then 250 mg for 6 weeks/then after 6 weeks went to 125 mg per day and they have taken that for 4 months. she said it took about 6 months to get him back to himself..Sarah

Thanks for the info..has anyone ever used any of these other meds?? Maybe Dr's use azith because it's more commonly used? Sarah

I decided to give my son azithromycin & the Dr suggested a short course of prednisone. A very nice lady Diana contacted me after seeing my posts and told me her son recovered with azithromycin. I have seen others have success with it to. We are only on day 2 so no change yet. My son had IVIG June 8th and no improvement..Dr said he will do another IVIG 2nd week of July if needed...sigh..I just want to get rid of this PANDAS! My sons OCD is horrible and he is really spacey..I appreciate everyones help. Sarah

Harmonii..you need to start a new post so others can help you! Your post is attached to a different one so alot of folks will miss it..Good Luck, Sarah

Hi all.. Still no improvement..worse than ever.. OCD is off the charts.. Hoping for a miracle! Sarah

Hi Evie, I went around and around with Kaiser my HMO for a year..my son was a mystery..none of the Dr could figure out what was wrong..we were on every kind of med you can think of and nothing helped..I had mentioned PANDAS to my pedi a long time ago and he said NO..so when I did get my sons PANDAS test back and it was abnormal..my pedi fianally started to take me seriously. I saw Dr Gupta at Univ of Irvine and he said Yes my son would probably need 4-5 IVIG's to get better. My pedi then agreed to do the first one for me(I think because he felt bad for mis-diagnosing my son). So Iwas really lucky to have Kiaser do IVIG for me! Alot of the Dr have no idea what they are doing with IVIG for PANDAS. My pedi called Dr K in Chicago to find out what to do! Unfortunately my son get worse & worse. It has been 17 months now that he has not been the same. It has been a week since the IVIG and I see no improvment at all. He is a zombie with OCD right now. I had a porphyrins test done and he has a tom of metals in him so I am going to chelate him next week. I am convinced that the metals are what messed up his immune system..He never had any problems before a 3 day fever he had ..and now I am wondering if the fever triggered something that was started by metals in him... I am supposed to see pedi on Friday and I know he is hoping for good news and I don't have any right now..If Kaiser won''t do another IVIG for me I will go to Gupta and pay to have it done..Sarah P.S. another Mom I know did IVIG through Gupta and she submitted the bill to her insurance and they reimbursed her for half! She was totally surprised!

Thanks for the encouragement...just when I think he can't get worse he does.. So I'll try to be patient and wait..also I will try to find that old post.. Sarah If anyone has gone through this please email me PUDGEO@aol.com

WE arrived at hospital around noon and they had IV started by 3pm..they gave him benedryl in case of a reaction and that made him fall asleep. IV lasted until around 8pm and then he woke up & was up all night! My son is used to needles etc so the IV was no big deal for him. Kaiser is saying they may only do one IVIG if we don't see improvement in the next 2 weeks..sigh SO like I said..I am not feeling very optimistic right now because he is a different kid from before all this..I wonder if he's still in there?? Sarah

Help, my son is such a wreck and I am not feeling optimistic that one IVIG can undo all has symptoms..I really would love to hear from anyone or a link to any old posts that were successful..I appreciate any help! Sarah

Hello, From my research of IVIG it is human immuglobin that is donated..hopefully the new immuglobin will go in and retrain the old immuglobin to stop attacking the "good cells". THe old immuglobin should start to follow the new immuglobin in the body...Sarah P.S. I am trying to figure old the most effective way to do chelation

No he is not from CNN..He is a researcher at Univ of Irvine Dr Sudhir Gupta..Dr Gupta has alot of experience treating PANDAS with IVIG My was not autistic or ever given that kind of diagnosis..before the illness he had he was very outgoing, social..he totally changed after a 3-day fever and he's slowly gotten worse. I cannot think of what could have triggered this..my DAN! tried to come up with a possible trigger too... He had not had any shots etc for a long time.. He will be fine with the IVIG..In fact he will like being able to watch dvd's for 5 hours laying in the hospital! He thinks the hospital is like a hotel! (a little more expensive huh) The IVIG is human immuglobin that should go in and take his immuglobin and retrain it to stop attacking good cells!! Dr Gupta said to expect at least 4-5 rounds.....such a long wait!! Sarah

I tried to take St Johns Wort for myself..YUCK..My stomach was soooo upset...not worth it..Sarah

Hello, Thanks for the kind thoughts.. the plan is to do IVIG every 28 days/ Dr Gupta said only do 4-5 rounds. So I said what if it doesn't work? what do we do?? My Kaiser Pedi ordered the IVIG to the WC hospital and the Pedi at the Hosp will administer. I doubt you can get the Andy Cutler book from the library..It's called Amalgam Illness . diagnonis & treatment. I was going through the book noting everything you can be low in that is related to immune dysfunction and my son is low in all the stuff Cutler says..like amino acids, zinc, selenium, folic acid.. I backed off on some supplements, transfer factor/coq10/DMG and I see a slight improvement in my son... He's just a mess, barely functioning... My DAN! agreed we need to chelate him ASAP to help IVIG work.. Sarah

My sons titers were never very elevated so that's why he went undiagnosed for so long...If you read on Dr. K's website you do not always have to have elevated titers..Let me know if you make the trip to Chicago and what he says! What kind of treatment are you looking to do? Sarah

Hello, I was looking at all your posts..look at webpediatrics.com and there is a Dr in Chicago who specializes in Pandas Dr Kovacic ..He has some intersting info..Sarah

Right now I view chelation as a MUST, I don't think my son will get better without it. WE started supplements 2 months ago and my son is worse! My son was not considered autistic or on the spectrum before this..After his 3 day illness he totally changed and it's gotten so he can barely function right now! So something is really out of whack in his system. I do not want to waste 4 rounds of IVIG with out chelation along with it. I feel it is very safe...look into Andy Cutler protocal, it's an excellent book Sarah I am very lucky as Kaiser my HMO agreed to do IVIG and pay for it too...We are doing it Sunday at Kaiser Hospital in WalnutCreek CA

Hello, I 've been doing alot of research about this..My son has PANDAS and we are getting IVIG next Sun (woohoo) He is bascially a wreck..tons of OCD/agitation/ spaciness....I was studying Andrew Cutlers book about Chelation and mercury poisoning.. and there is a huge correlation between auto-immune and metals..so now I am feeling like we need to chelate my son in order for the IVIG to work! He did have a porpyrins test that came back HIGH in metals esp mercury.. I'd love to get some more ideas/comments about this...Sarah