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Also can you think of any triggers that my have upset your sons immune system? Did you remodel? paint? change anything at home or school? I know when I first took my son in to the DAN she had a huge list of things that can upset the immune system. Just a thought?? Sarah

Welcome to our forum.. Danuta gave you some excellent advice and you already sound like you are researching on your own. As for finding a Dr who understands PANDAS..most traditional Dr will poo-poo PANDAS and tell you it's not real. You need to find a DAN Dr (Defeat Autism Now) These are bio-medical Dr who understand the immune system. I thought your kid had to have autism to see these Dr but that is not the case. If you go to ARI (autism research institute) on their website they have a complete listing of Dr's. The only ? I have for you is usually with PANDAS there is also some OCD/anxiety issues. Are you experiencing that with your son? Also most PANDAS parents can tell you the day their child got strep because their behavior changed. It is almost overnight.. Have you looked into any possible triggers for the tics? environmental or foods? A DAN Dr will test your child for food sensitivities and other possible triggers (toxins) As you can tell my DAN Dr saved me...if I was still believing my pedi my son would still be a mess and put on tons of meds..Sarah

I feel the best thing is to educate yourself on chelation and decide if that is something you want to do with your child. A DAN Dr will be able to help do chelation safely or a naturopath Dr. My son is having IV chelation weekly and is tested each week to see what he pulls out and also the chelation does deplete some good minerals such as zinc (so that is added in the IV). Some Dr like using suppositories on kids at night (so it doesn't mess up their gut), some like IV, you can also do it orally... As I had mentioned previously I read ANdrew Hall Cutlers book, Amalgam Illness and it opened my eyes to the immune system - metal toxicity connection. Also alot of people differ which chelation drug to use and how often to give and how much. Sarah

Thanks, I read the whole report.. It sounds similar to a porphyrins report we had done on my son...showed lots of metals. There's no chance the immune system can work properly if it's clogged up with toxins & metals! I posted on the other board about an excellent book on chelation by ANdrew Hall Cutler...I have followed it and used it on my son. Sarah

Thanks for all the info.. You sound like me..what came first? the metals or the immune system mess? We may never know but they are sooo related that they both have to be fixed for the body to work correctly. As for my son we were trying to figure out if there was a trigger or some toxin that he was exposed to thus causing the immune dysfunction. An excellent book on chelation is by Andrew Hall Cutler. He was very sick and no Dr could figure out what was wrong with him until he realized it was his mercury fillings. He has a very safe and easy chelation plan , I have done it with my son. The book has alot of excellent info on immune system and supplements. Currently we are going to have IV chelation done weekly at our DAN. Yes it is costly....but each week he is testing high for arsenic and lead. Good Luck...Sarah

Thanks for bringing up this topic and Kim's excellent information for us all! My son had a normal delivery but when he was 2 we realized he was delayed and doing everything at the end of the curve. His speech was very affected and he started signing and making up his own language!(He prefers to sign rather than try to speak to this day) He had an MRI at 3 and it showed scarring in his brain. This drove me crazy...where did this come from? I had a normal healthy pregnancy! No Dr could give me a good explanation..until I started seeing Dr Mielke the DAN Dr....she said it's vaccine injury...He had 5 vaccines in one day when he was 5 months old. I really think this is why he is delayed. I also believe over anti-biotic use as infants has contributed to an increase in PANDAS in our now older kids.. As for vaccines I recently took my 14 yr old very healthy daughter in and they were trying to talk me into same vaccines...chix-pox booster and cervical cancer vaccine..NO WAY! Sarah

Hi, Have you had him tested for any food sensitivities? When you said he was pale that made me think of this..DO you have a DAN Dr in your area who can test him for food sensitivities and vitamin defiencies? A traditional Dr will only test for food allergies and alot of foods like wheat & dairy are not digested correctly. How is his diet? DO any foods trigger tics for him? Sarah

I found out last week that Dr Mielke is now doing IVIG on Sat. in her office. She is in Pleasanton CA I know several of you live in the Bay Area...www.developmentalspectrums.com As for my son, MArshall, we are seeing some improvement...we are doing HBOT and up to about 30 hrs right now. We rented a unit for a month and are considering buying one since I feel this may be a long term therapy..I really think the month long azith started the healing for him and now the HBOT seems to really be helping him, He's not as spacey and seems to be remembering school work. He still has some OCD & anxiety issues(sorting things, drives me crazy!) and he can get angered and frustrated easily but I am hoping those will start to subside soon. I really feel the IVIG helped but it was not a dramatic improvement for us. Thanks, Sarah Mead

to EAMOM... my son was mis-diagnosed with seizures for 6 months..during this time he was put on depakote which greatly improved his symptoms(I found out later it's an anti-inflammatory) he had an allergic reation to it so we had to try something else..so he was put on keppra & lamictal which are both mood-stabilizing type drugs...they helped him a little..but then he became worse and I found out it was not seizures....Sz meds can help alot with PANDAS symptoms, but yucky side effects..who wants their kid on these meds long term?? not if you can help it! My son was tried on trileptal, tegretol, topamax, dilantin, phenobarbital, keppra, lamictal, neurontin, and there is probably more...those Dr probably would have kept prescribing meds..thank goodness I found out it was PANDAS. Sarah

My son has had 3 single IVIG's...I was fortunate to have Kaiser(my HMO) do it for me. I feel that my pedi did it because Kaiser mis-diagnosed my son with seizures for 6 months and he kept getting worse. Finally through private testing we found out it was PANDAS (also I had mentioned PANDAS to him in the beginning of all this and he said NO) I am hoping they will do one more for me.... Kerrie needs to tell everyone about her yogurt experience!!! Don't give your kids activa, it has a strep culture in it!! Sarah

Bummer..I bought lead test strips and swabbed the tub, dishware, and toys....no lead...I wonder where he is getting all this lead??? Thanks for the help!! Sarah

In my opinion it is good she showed some improvement...but she may need more than one IVIG to correct her immune system. Her "bad" antibodies are not yet fully corrected by the new antibodies. The antibiotic may help, give it more time and you may need another IVIG. My son has shown very slow improvement..he's had 3 IVIG and a month of azith, his concentration is much better and he actually plays sometimes like he used to but we are far from over this..he still has OCD & anxiety so I know I am not done with treatment at this point...Sarah

Thanks for the info.. On his last UTM test his lead was elevated..which is better than highly elevated but still that means there's alot in him! We are chelating once a week and then testing to see what's coming out. As a parent I am always wondering where he's getting this stuff and why isn't his body getting rid of it..but I know if his immune system is not working properly he will not dump it. Our dinner ware is ceramic and says microwave safe? I got rid of all the cheap plastic stuff from China a long time ago. Also we never microwave in any sort of plastic. THe only plastic dishware I have is tupperware and I wonder if I need to look into that? My DANs also recommends no teflon cooking which is really hard to do! He eats mostly organic & no tap water..... You guys are life-savers!! Sarah

Hello, After we started on this PANDAS journey I took my son to a DAN! Dr who checked his UTM urine toxic metals and he showed high amounts of arsenic & lead. I knew that a cause of immune dysfunction was toxins but I wasn't and still not sure what happened first? Did the immune system go haywire and cause my son to stop excreting toxins or was it the other way around? Anyway we have been doing IV chelation and every week they check him and he is full of lead!! SO last night my husband wondered if my son playing with action figures(power rangers) in the bath tub could could some how be causing this? Aren't those toys full of lead? and he sits and plays with them in the tub so he could be absorbing it? Do you think this is crazy? Has anyone ever heard of this? We also put in epsom salts everytime he bathes...and he likes to take a bath every day... Thanks, Sarah

Hi Amy, I'm not sure I can answer all your questions...but the meds are a band-aid for the true symptoms. THis is how I always look at it. The meds are not solving the real problem. I did IVIG with my son (only 3 so far) and I'm sure my Dr would have preferred to just put my son on meds instead of the IVIG(much cheaper). Hopefully with the IVIG you can get rid of all the symptoms and not have to medicate! There was a lot of questions if my son had PANDAS and now they are saying it is an "encepalitis type disorder" either way you look at it the kid has anxiety & OCD he never had before and IVIG works for both conditions!! I feel IVIG is pretty safe and will hopefully help your daughter enough that you can wean her off meds.. Sarah

HI, As you know each kid is different...But I agree that antibiotics may be needed and longer than a week. I think my son being on azithromycin for a month is what really started his improvement. I am not sure if I will put him on again, I'm going to see the Dr in 2 weeks and will see... Buster has posted some excellent info which is great to have on hand when you go see your Dr! Sarah

Thanks Carole..it was something like ginko but it started with a P??I thought it was on this forum,,thanks

I thought about a month ago I read some info about a supplement here that started with a P? and was an anti-inflammatory ? I can't find the old post? Does that sound familiar to anyone? Thanks, Sarah

This makes me ill... I recently took my 14 yr old daughter in for a physical and she is SUPER healthy(thank god one of my kids is) and the Dr was trying to talk me into a measles & chix pox booster and the cervical cancer vaccine...all I could say was NO WAY! THe cervical cancer vaccine would probably GIVE her cancer in 30 years! Sarah

I think when kids throw up after IVIG it is because it is such an internal shock to their system....their immune system is being flooded with new antibodies. My son has always been fine after..maybe a little sleepy and a headache. My friends son was flu-like after a 2-day IVIG but was fine after the feeling yucky day... As for the poor little girl with Lyme..she will probably need several IVIG's to get better. I think it is rare one will do the trick.. Alot depends on age of the child too.. I am considering going back on azith since I feel it did help ( and now we have the outbreak of impetigo..aarghh) Some kids immune systems are so out of whack they need the azith to stay regulated. I do worry about the long term effects of all this too... I am trying a product by VRP called Epicor..would love to hear feedback from others if they have tried it? It's an immune modulator & anti-inflammatory... Sarah

I was just thinking about this post today... My 11 yr old PANDAS/encephalitis son also has issues with impetigo. He caught it about 4 yrs ago from a girl in his class(you get it from touching) I also thought it was wierd hers went away and my sons comes back. He has a little spot on his chin..so it has not flared up since before the PANDAS and then the other day he started itching it and it's a mess again. It really bothers him alot so I have to keep creme and a bandaid on it all the time. So what is the correlation with the immune system and the impetigo and the PANDAS???? Does it mean his immune system is backing down so the impetigo flares up? Or does it mean there is a staph/strep infection that is dormant and becomes activated at times??? Thanks, Sarah

Hi Dedee, I just wanted to comment that somewhere in this forum someone listed Dr Murphys new phone #.. Also I was giving my son supps like 5-HTP, inositol, NAC, co-q-10 and they made him worse! I actually cut them all out and he is doing better on just Kirkman spectrum complete, omega3 , adrenal cortex, and I am trying a product by VRP called epicor which is an immune modulator. So I guess what I am trying to say is I thought the 5-htp etc had to help and it ended up making him worse so I guess keep an open mind... Have you ever done any long term anti-biotics? We did a month of azithromycin and I think it definitely helped but I am not sure if I want to put him on it again... I would say my son still has OCD/anxiety (we use ativan) but his memory & retention are finally coming back a little. Have you ever thought of doing any talk therapy with your son so he is not worried so much? I know it is frustrating because every kid is different and what works for one will not be the same for another!! Sarah

Wow Blake, my sons fever was at the end of Jan 07..around the same time and we are still dealing with symptoms too! He did a good job of describing the IVIG..They give my son benedryl and it wipes him out..I'm very lucky..my son loves going into the hosp. and picking out videos and laying there being pampered by the nurses. He was nver sick after ward..my friend's son had 2 day IVIG and was very sick for a day after..flu like symptoms but then was fine. We have had 3 and I wish it was the magic cure but so far no and we are doing HBOT. I would like to possibly do one more IVIG after the HBOT...Sarah

So sorry to hear about Adam.. My son too had a fever and his whole personality changed... I would look into getting Adams immune system checked out ...test his antibodies, mylin basic protein antibodies . Did he get tested for strep? ASO titers? You may want to look into seeing a DAN! Dr or naturo-path Dr. They may understand what is happening.. I'm sure others will chime in with more advice! Sarah

Thanks for all the info....I stopped giving it to him last week. I appreciate all the help! We started doing HBOT 2 days ago and it seems to wake him up at night so I may need to adjust our scheldule so he's not in there at night! Sarah