Pudgeo

I am an "old timer" I haven't posted for along time but someone sent me an IM so I thought I would check in. My son had PANDAS in Jan 2007 and it took at least 2 years for his symptoms to subside. He still has some residual OCD which I treat with Luvox and it seems to help. WE did supplements, tried different medications, HBOT (we bought one) IVIG (3 times) anything that was anti-inflamatory. Finally (it was a slow process) he started coming back. I think every kid is different and not one thing is the magic cure. I think it was a combo of everything we did. We still have the HBOT and we went in faithfully for 2 hours a day for a year. Now we have not used it in a year and I am wondering if I should keep it or sell it? I always worry if he gets strep again that the symptoms will flare up and we will be back in it. Good Luck and hang in there! Sarah

Yes, My son had 3 IVIG...alot of the "old timers" here know me. I am also restarting doing the HBOT again...back to square one! Thanks Buster for all the research you do!! Sarah

My friends daughter (teenager) has had tummy aches for about 6 months. She finally took her in for a GI test and it was postive for strep!! So she has strep bacteria in her gut...Sarah

Whats PEX??? Sarah

Hello, Sorry I was gone for so long, I definitely need to get back here more! My son had a relapse of symptoms. He became ill with a fever in June and he had a definite relapse. He is spacey again, pacing around, moody. Luckily not as bad as when he first started with PANDAS in Jan 07. I restarted the azith 2 months ago but so far no change. I would say overall he has never completely recovered, even when he was doing better, there was still behaviors and things about him that were definitely not there before he had PANDAS. So I feel like now we are starting over ... I wish I had better news! I will be checking in and reading posts now! Sarah

HAHA I loved that analogy Bronxmom..like an addict begging for heroin, All the parents here get very passionate about treating their children! You know in your gut what your kids need and the Dr's are clueless. I must say my son has had PANDAS symptoms for 2 yrs and 1 month..we have been on azith for 1 month and WOW he is coming back..not 100% but very close..he still has some concentration issues but he has his personality and playfulness back! So even after 3 IVIG's I see better results with azith than anything!I am lucky my DAN Dr is passionate too about doing whatever it takes to get our kids better!Good Luck! Sarah

Dear Michelle, What is the school thinking of doing if your son is not meeting 1st grade standards? Do they want to hold him back?summer school? Would you consider a LH (learning handicapped class?) It might be less stressful for your son. That way he could work at his own pace. Is he really stressed at school? It sounds like the teacher is trying to control something she doesn't understand. Refresh my memory..do you see a DAN? I think you do...my son did terrible on abilify. & anti-depressants. I was giving him a low dose of dexedrine before school but now it seems like it's not even doing anything. I don't know if I can offer much....I just hired an IEP advocate to help with my sons March IEP. He is supposed to go into 6th grade and he has regressed so much it is frightening. He is in an LH class due to cognitive delays...before the PANDAS he was fine emotionally, behaviorally etc, just behind in school. Now he has barely caught up to where he was academically 2 yrs ago. I hired the advocate because I want to see if we can possibly get a retention..I'm still not sure what would be best. I think he's tired of his current teacher and would like a change. THe IEP advocate was calling this an "aquired brain injury" because my son too is classified as other health impaired due to never really having a diagnosis besides dev delayed. He never had any autistic tendencies until after the PANDAS and now we still struggle with OCD & anxiety. Since I also sub at his school I see ALOT of what goes on and the juggling of kids and how the teachers talk..trust me..I know more than I care too! good luck..Sarah

Hey, I did research this and I bought some to try for my son..I figure why not, we've tried about everything else!I'll let you know if I see an improvement...Sarah

sorry to be dumb but what is DMAE? Sarah

Hi Worried Dad, So sorry to hear what you went through and thanks for sharing with us so we also can learn from this..I have wondered if more IVIG would help my son..He only had 3 and he is 11....hang in there, Sarah

First I want to thank BUSTER for equipping me with studies to show non-believer Dr...unfortunately he already had his mind madeup. (Dr Sanker at Kaiser Santa Clara) Dr said "Pandas is really a tic disorder . These children actually have hidden tic disorders that come out when they get strep" I'm totally serious, that's what he said to me, I almost laughed right there. I swear if there's not 100 years of studies done these Dr's just don't get it. They want 1000 research papers done to prove what we all are living here. The good thing was he had seen other kids like my son who had a fever had regressed..but he didn't have ANY treatment ideas and he did agree with the diagnosis of "auto-immune enchepalitis" I am still trying to figure out what exactly that means(another name for PANDAS that the Dr's like the sound of better, perhaps?)He told me my son may never recover...great huh? Oh yeah, he said my sons ASO titer was not high enough to be PANDAS, (but wait Kaiser did the ASO titer 6 months after my son was sick, gee, you think it may have gone down in that time? It was slightly elevated then) So for now I will stick with my DAN Dr who is willing to try many treatments and is always optimistic that my son will get better! You all are the BEST!! Sarah

In my opinion...(because I went through this with my son) anti-psychotics/anti-depressants don't really do the job with our kids because this is an anti-body problem...My shrink even said that to me...If she showed improvement with the anti-biotics I would try that first.. lamictal is a pretty low-side effect med and would probably help all of us with our moods!!so it is good it may help a little! Sarah

My friend is trying actos now on her PANDAS son. I am watching and waiting to see if it helps him. It really has a pretty low side effect profile. She wanted to try this before anti-biotics. After researching it I feel it can be of benefit to some kids..but as we know they are ALL different!! Sarah

I forgot to add that my Dan Dr Mielke said the majority of your immune system functions are in your gut so this is why this works..does that theory sound right? Sarah

Hi Beth, You may want to look into 2 books to help you..first one is Treating the 4-A disorders by Dr Bock. he has ALOT of info on anti-inflammatory supplements you can try. Also Children With Starving brains by Dr McCandless has a new edition where she discusses actos & hbot for brain inflammation. There are alot of natural supplements you can give to help modulate the immune system( Epicor by VRP, transfer factor, olive leaf extract). Most of us had kids whose symptoms were so bad we have had to use several therapies to get our kids to improve! Sarah

Yes, I have heard alot about this! In fact my DAN Dr mentioned this to me to possibly research for my son..She has a son with autism and tried it for 3 months but her son did not show a benefit..She said it's about $1000 a month! the site is www.ovamed.org also she recommended a supplement called Earth Dragon by allergy research group Sarah P.S. I am soo happy that we are seeing improvement in myson! He has been on azith for 10 days and is becoming his old self again! I'm keeping my fingers crossed!

Thanks so much, I will try to give azith with meal and follow later with pro-biotic..also for tummy aches does anyone see a difference in taking the capsules VS liquid? any easier on the stomach?..we are planning on staying on for 6 months so I don't want my son to suffer that long..thanks! Sarah

We just restarted my son on azithromycin 200 mg a day...and his tummy really hurts. Is there a better time of day to give it? I also am giving pro-biotics AM and PM. I was giving the azith at night but now I wonder if that's worse...did anyone else have this? Thanks for any input..Sarah

Hello & so glad you found this board! My sons tics were very mild but cleared up after IVIG. I sent you a PM too about the impetigo(my son has it too & it won't go away!) THe problem with these docs is they want to treat the symptoms..my son was a wreck more on anti-depressants, he didn't need more serotonin..these kids need their immune system modulated! Right now we are starting him back on azith & acyclovair to regulate his immune system. I understand your pain..my son has lost his outgoing, happy personality too. That is the hardest part for me to see his friends stop wanting to play etc. because he is so different now. He is very spacey now and has a hard time concentrating. Like I said in your email, every kid is different and you just have to start trying....IVIG, azith or supplements, meds..there is no one protocal that works for everyone..Sarah

If you go to the Autism Research Institute webpage there is a spot to click for finding a clinician...there are DAN Dr's and naturopths Dr. the only draw back with the ND's is they can't prescribe certain medications but they can be very helpful too. I wasn't sure what I was getting into when I started all this but now I realize these are the BEST Dr's ever! They try to find the root of the problem verses medicating the symptoms..THey are very $$$ but very well worth it! DAN Dr's will want to do lots of tests to find out what is wrong...their tests are much thorough than any your traditional Dr will do(and give you the real results). Sarah

My son has nver had this..but I would make sure there is not a bladder or urinary tract infection? drink cranberry juice and see if it stops? also I would look for signs of yeast as that make my son itch his crotch alot? good luck, Sarah

I agree with you both....when that Dr wrote that I was laughing to myself that he really doesn't understand or know PANDAS!!! I just like that he wrote the IVIG cleared up the tics since Kaiser was fighting my Pedi on doing the IVIG.. Sarah

Hi, Yes I understand how you feel, You want to get at the root of the problem but also you have to have your kid function and you can't wait forever for this...I struggle with this constantly.. Please be open minded when you see these doctors and do your own research. I've listened to too many who told me they had the answers and they were wrong..listen to your gut...good luck, Sarah

THis NAET is all new to me....She took some of my sons blood and hooked him up to a computer and then it all starting spitting out in the computer. My friend took her son to the NAET to check supplements and she felt the NAET was correct everytime she identified a supplement that was bothering her son. My son has just been a wreck so I knew somethiing is really askew in his body..Thanks for the tips! Sarah