Pudgeo

Has anyone ever used a Natural Allergy elimination technique?? My son has been doing HORRIBLE..we even stopped the HBOT! I knew somethng was up with him the last few weeks because he had really bad breath, very sweaty at night and a spot of impetigo on his face flared up again(also very spacey)..I also have been feeling that every supplement I give him is making him worse! So I took him to a place called Immune Matrix(in San Jose CA) My friend has gone there and it has helped her son(I am still skeptical) When she tested him he had major gut issues(she thinks there is still strep living in him) and she had me stop all supplements for now. Also he is now gluten/casein(dairy) free. She said he was really sensitive to alot of foods..She said basically all his supplements were going straight through him and going into his system unabsorbed. When she hooked him up to the computer he has problems with inflammation & his immune system(surprise!) So I am going back in 2 weeks to start allergy treatments..my friend calls her the Voodoo Dr but says it works..I must say we stopped everything Friday and my son is MUCH clearer today! P.S> I got official report back from Stanford. It said my son probably didn't have PANDAS because it is a tic disorder and usually there is a sudden onset of tics(we didn't get tics until later) then he stated that the IVIG did clear up the mild tics my son did have...hmmmm is that a contradition or what? Also he diagnosed my son with an auto-immune condition and mild encephalitis but it is too late to do a lumbar punch to find out the infectious agent. So I asked for a referral to a good Kaiser Neuro to go over these findings..My son has regressed so much and hardly made any progress at school this year.. sarah

I tried it with my son and it made him hyper...supposedly if DMG isn't good for your kid you can try TMG..Sarah

Hello, My only suggestion is to find a good DAN Dr. They can run tests on your son and try to get to the root of what is wrong...Have they ever run a PANDAS panel?I've felt in my sons case I needed both the expertise of the DAN Dr and the traditional Dr. Good Luck,Sarah

Now you tell me this Kerrie! We have actually stopped using the HBOT because we saw a big regression in my son. I am now looking back into medication and changing supplements. Sarah

Kelly, Every child is so different.. My son had 3 IVIG and we only saw very minor symptom improvement. But I feel he had gone so long mis-diagnosed(over a year) and he was older, 10 yrs old. I really feel that anti-biotics should be tried first to regulate the immune system. IVIG is really a very safe medical procedure. Sarah

Hello, A good PANDAS test is by NeuroImmunologyLabs.com I did this test twice on my son and both times his results were mostly abnormal. When I showed the results to my Pedi he was very interested and ordered IVIG for me..my Neuro thought the test results were meaningless since there was no data to back them up (PANDAS) So even if you do the tests you do not have enough to convince Dr that this is what is really wrong! Also I found with Kaiser(my HMO) that their tests are not as intense to show true results as the DAN tests are. For a true test of food allergies you need to do a food sensitivities test. good luck...Sarah

Thanks you for your comments....My son is still dealing with mild OCD/ anxiety / and spaciness. I have tried different supplements but nothing seems to be able to beat this. I appreciate the input about Kavinace (sp?) and I am going to try it.

Yes my friend Kerrie told me she was giving her son Dannon activa until she found out it had live strep cultures in it...

Hello, My son has IV chelation at our DAN Dr every week. I am going to do a total of 3 months. We did see some improvement in the beginning ( he is PANDAS) An excellent book to read is Andrew Cutler's. It gives you alot of info. He is against EDTA so you have to have an open mind when you read it! His method is a small dose of chelator every 4 hrs..so you have to wake your child up. I did this method for 2 months. I decided to try the DAN Dr and see if either method was more successful. You need to be very careful you do not deplete your childs essential minerals such as zinc. At my DAN we do a UTM(urine toxic metals) and my son is always elevated for lead/arsenic/nickel also thry check his other mineral levels. good luck! Sarah

Hello, We met with Dr Sanger at Stanford on Friday. Yes, he was an"evidence based Dr" and he wasn't sure if he believed in PANDAS. He said he had no idea why my son changed after a fever/viral/bacterial illness, His explanation is that some kids are wired differently or have a pre-existing condition that's unknown and a fever/illness will set this off (isn't that PANDAS??? hmmmm) so he felt since my son was showing some improvement (after at least $20,000 out of MY pocket) that he didn't want to do anything or prescribe anything different....He also said that if it is PANDAS he will grow out of it anyway! ( yes, who wants to wait 3-4 yrs for this to happen!) Dr Sanger also gave me a little lecture on how HBOT wasn't tested enough for this condition..... The good thing is that Stanford will review his MRI for me and give me a 2nd opinion. I brought in copies of all my sons medical records & all tests done by Kaiser & DAN Dr. THe nurse and 2 student Dr went through all of it and were very happy that I had brought it and had it well organized in 2 binders. Hope that helps anyone who is thinking of going to see him! Sarah

I used to use transfer factor but I switched to Epicor by VRP. It seemed like he was worse on TF but it's hard to tell. We try to do the HBOT 3-4 times per week for a minimum of an hour. We rented one for the month of Sept and really started to see improvement in my son (personality coming back, less spacey, wanted to play again) so I was worried about regression so we bought a used one through our DAN Dr. With the HBOT we can't go in too late in the evening because it wakes you up!! All that oxygen gives you an energy boost! then you can't sleep at night! I will post what Dr Sanger says...I know to not have my hopes up!! I was thinking of making him a DVD of my son before PANDAS so he can see the difference! Thanks, Sarah

I just saw Amy S posts..sorry I was out for so long! My son had Lyme test run by Igenex and it did come back negative.

Hello, I wanted to say HI and check in... We are doing HBOT and have seen some improvements....I still feel like we have a long way to go. My son is still very spacey and having trouble concentrating. I feel like we take 2 steps forward and one or 2 back!! I have an appt with a Dr Sanger at Stanford next week. He is supposed to be some big medical researcher so I will be interested in his views on PANDAS ( if he thinks it's bunk or not) and what treatment options he would recommend. I have my son off dairy and now I am thinking I need to do a trial of wheat free(because he is sooo spacey) ALso my son had a really nasty ear infection(staph) and had to go back on anti-biotics..so now I am wondering what is going on with his immune system??? Thanks for everyones help! & hope you all survive the holidays! Sarah

Hi, We actually started to bring my son home from school for lunch. I know everyone cannot do this...but my son was never eating his lunch and so we went to see what was going on and it was complete chaos in there. I don't know how anyone can eat in that enviroment. Long story....My son is off dairy and this week I slipped and let him have lasagna with real cheese..and he is soooo spacey..I also give him enzymes before he eats..Sarah

This a great idea! Hopefully it will help parents! I live in the east bay or outside San Fransisco CA Dr Mielke (a DAN DR) was who formally diagnosed my son with PANDAS and called my pedi Dr Hearey(Kaiser) He was very open to the diagnosis. My pedi neuro from Kaiser (in Hayward) told me my neuro science PANDAS results were meaningless...I can give her your name if you PM me. She was also the one who mis-diagnosed my son with seizures for 8 months! She totally could not "think outside the box" Sarah

Char, It is great you are here! You don't say where you live but one of the major hurdles we all have is finding a DR who believes in PANDAS and one who will listen to you possibly be open to prescribing long term antibiotics.(if necessary) How did you find the food sensitivity? Did you have an IGG test run? so you must be seeing someone?? After we found the PANDAS I had my son tested for everything and he was sensitive to dairy/eggs/PB so we eliminated those from his diet. Also he had several vitamin defiencies and tested high for some metals. Personally I would not do anymore shots ( to cause more aggravation to the immune system) You don't say if you started any supplements? vitamins? I've done alot of research on immune system supplements(as everyone here does!!) right now I have my son on epicor from VRP. It's an immune modulator. Also some people use Transfer Factor. If you're seeing a naturopath or a DAN Dr they may suggest some thing like this? My DAN Dr just started us on high dose vitamin D, she said it really helps the immune sytem..Sarah

Cheri, When I was new here I read all their old posts..very helpful! Sarah

When my son was first sick I was in contact with another Mom in my area, Her son was 13 and after a viral illness came down with OCD/anxiety..couldn't function/had to stay home from school...the works. He was put on all sorts of anti-psychotics. After I found out what my son really had, I emailed her..Her son is now 15 and still has some symptoms. She emailed Dr K and explained what happened to her son. Dr K felt it had been PANDAS but now he was too old for IVIG. I am not in contact with the Mom, but I was very surprised he still had so many symptoms at an older age..(15) who knows, maybe if it would have been treated from a viral/bacterial angle it would have had a better outcome? We all PRAY that puberty can make it go away!! Sarah

http://www.autismwebsite.com/practitioners/us_lc.htm This is a list of DAN Dr by state...They understand immune dysfunction & PANDAS. Good Luck! Sarah

Thanks for posting this! Let's face it..our world is really polluted and our kids are the ones suffering for it. Too many pesticides and chemicals... This is why we are doing IV chelation every week....Sarah

Hi Kim, haha Munchausen syndrome!! That is sooo funny! It's just us parents who go BONKERS trying to tell these know it all DR that something is wrong with my kid! I know how expensive the DAN is too. (I think my sons LYME test is around $1000.. yikes) but I have to figure out what is wrong with my kid! ANyway you made me think of something when you said the munchausen thing..when my son was in his 8th month of mis-diagnosis (the neuro told me it was seizures) and he was in the hospital for a week the neuro told me it was time for ME to start a med to control my anxiety and stress!! WOW did she step over the line! You bet I couldn't wait to show her his PANDAS panel and all the other tests which showed how messed up his immune system was! Keep plugging along and hang in there! it sounds like you are doing everything you can!! Sarah

Thanks for the helpful comments, I wondered if others had been suspicious of this also.. My Dan said the tests the regular Dr and hospitals do for lyme is not adequate, she also said that if it is lyme you need to go see a specialist for lyme and usually ALOT of anti-biotics are given (she said sometimes 2 or 3 at the same time) and usually iv anti-biotics. She also said alot of Dr are not knowledgable to treat it and may not "believe it" that is is the cause of a childs behavior change.She went to a conference on it and said she thought of my son a few of her other patients and really stressed that I test him. As for chelating agents the Dr decides based on what is pulled out of my son at the previous visit. We usually do a UTM (urine toxic metal) test after each chelation. He's been pulling mostly lead & arsenic and a little mercury. So Amy S...I think you need to be looking into anti-biotics??? IVIG also treat this..

Hello all....I am happy to report that we have seen improvement in my son that last 3 weeks..woohoo We have been doing HBOT for a month and bought a used unit, I was scared to stop it since we started to see some changes. My son is now less spacey, is getting his personality back and wants to play again! We still have some lingering OCD/anxiety issues but I am walking on eggshells that we don't regress...we are also doing IV chelation weekly. It's always been a mystery what my son had when he had his fever since Kaiser never checked him for strep! My DAN Dr Mielke had me do am extensive LYME test. It was costly...but it's symptoms can mimic PANDAS & encephalitis...plus we are trying to figure out if my son should be on long term antibiotics..She said if it comes back positive for LYME kids need IV antibiotics. She really stressed that alot of kids are positive for LYME and don't know it. Does anyone have any experience with this? Thanks for all the support...Sarah

Kim, We all understand your frustration...some of the trad Dr treat us MOMS like we don't know anything and we should just be happy with a prescription for something and out the door! I guess that works for some people but not for us!! Like I said, I wish I had $$ for everytime I said."this all started with a 3 day fever" I'd be rich(or offset my DAN visits haha) and did any Dr listen to that? NO.....here try seroquel,risperdal,ativan,zoloft.prozac..you get my drift. Hang in there!!Sarah

Oh my ..I am HORRIFIED a Dr would consider putting a 3 yr old on risperdal!!! Once again traditional Dr just want to put a BIG BANDAID on the problem!!! FIrst of all you need to go see a DAN dr...(I know I say this all the time now) but hear me out... My son also had many things going on like yours(dev delay, speech delay) and I didn't do anything about it...then at 9 yrs old his immune system whacks out...I wish I would have seen a DAN a LONG time ago and maybe some of this could have been avoided. I truelly believe if I would have had him tested for food sensitivities, metals, and vitamin defiencies he could have made more progress ( and possibly avoided the big PANDAS crash) Also after having Dr's at Kaiser (my HMO) mis-diagnose my son for son long (8 months) and seeing them just keep handing us meds without really listening to me(how many times did I say all this started after a fever??) Especially my neuro told me she didn't believe in PANDAS. They are of little help...Keep educating yourself and this forum has the GREATEST parents who research everything!! Sorry to rant.....Sarah