ratlenhum

My son did months of oral antibiotics, months of IM penicillin and 16 IVIG treatments. Behaviors were still there and his ASO and AntiDNase B titers were as high as ever. We finally decided to try homeopathy and within 9 months the majority of my sons PANDAS related issues were resolved and for the first time in 3 1/2 years his strep titers were in normal range. So in our case, no, IVIG did nothing for my son but put his parents very deep in debt. I must say we saw some improvement around IV 5 and 6 but then it leveled off and never got any better, then while doing IVIG the things that improved got worse again.

No, it was not Dr. Gupta. Please don't take Dr. K's brief email response personally. He is so busy but usually manages to get a quick reponse to us all. I would recommend setting up a phone consult with him and he can then really get into your case and talking is always better that writing. We just had another consult with him yesterday regarding low-dose ivig (vs 1.5 dose) and that it almost always does nothing for Pandas (I said ALMOST, so pls no bashing!). We are definitely staying with the 1.5 dose, waiting at least 3 months and then decide on another high-dose. I haven't heard a lot of positive stuff about Dr. Gupta. Best of luck. Sadly, after spending $45K + for the IVIG we have done in the past, even if I spoke to Dr. K, I wouldn't have the money to pay for even one IVIG at 1.5 dose. When we first started my son was 48 lbs, now he's 78 lbs and the cost would be outrageous, then add airfare and hotel. It would be impossible to even attempt to scrape up. Credit cards are maxed, 2nd mortgage is at it's limit, and I think the family is tired of giving us money

. Because of our phone call and several others from families having poor success with monthly IVIG he called the doctor who was prescrbing it, himself a brilliant, talented and highly regarded immunologist and convinced him to change his protocol to a single or infrequent infusion of at least 1.5 g/kg of IVIG. Dr. K told me the reasons, but it is not my place to try to explain them, even though I did that poorly on a previous post. Was the other doctor Dr. Gupta at UCI?? If so I wish someone would have told him that before we paid out of pocket for 16 infusions. We're still paying for it and will be for a while. I contacted Dr.K when this first started for us. My son also has autism. I got back a brief email saying something like a prednisone push usually indicates how well a child will respond to IVIG and with autistic kids the results are not always accurate for some reason. Kind of blew me off and didn't seem interested in taking on my son as a patient. So I had to go elsewhere. It's been the story of my life. I keep trying to do the right thing for my kid, spend tons of $$$ and always end up with the person/treatment protocol that doesn't work.

I think my kid is the exception here. We did 16 IVIG treatments and saw improvement around 5 or 6, then none after that. Around IVIG #12 his symptoms came back. We increased the dose for 4 more months and saw no changes at all so we stopped.

Hey Ratlenhun, that's a lot of IVIG's! Worried Dad's son had several IVIG's, high dose Augmentin is what finally eventually made a big difference. Did your child have a good workup with an immunologist? (I don't remember much about your situation except that your child is autistic!) The other autistic kids on this forum (Peglem's, Melanie's) were found to have immune defiencies. Also, did you ever send blood work into Dr. Cunningham and what were the results? What dose of Azith. did you use and for how long and how much does your child weigh? What dose of IVIG did your child get? Was there any improvement at all with IVIG? Or was there improvement that just wasn't sustained? Have you noticed any improvement with Advil? How "sure" is the PANDAS diagnosis? How old is your child and what symptoms are your dealing with? My son started with clear cut symptoms that hit almost over night 6 weeks after an untreated strep infection. Untreated because he was misdiagnosed. I don't know who doctor Cunningham is. We ran a PANDAS profile through Neuroscience. They no longer have this test but it tests for strep markers and antibrain antibodies. My son's numbers were all 400% elevated. We ran all sorts of blood work through Dr. Sudhir Gupta at the Immunology Department at UC Irivine and flew from NY to CA to see him. He ran a full immune panel and all sorts of tests on him. My son had 4 months of IM Bicillin and his numbers on his PANDAS profile got higher. We switched to Zithro and if I remember correctly he was taking 500 mg 2x a day for about 6 weeks. The doctor switched him to Omnicef for a while than back to zithro. We started IVIG at 15g of Privigen and used that for 6 months. We then swtiched to 15g of Gamunex for 6 months then we increased his dose (due to weight gain) to 20g of Gamunex. We saw some improvements around the 6,7,8 month mark, mostly a decrease in his vocal tics but nothing overwhelming. We stopped after 4 IV's of 20g because we could no longer afford it. It started out at $2200 a month and was $2900 a month by the time we stopped. We just ran out of ways to fund it and we weren't seeing improvements that would make it worth continuing. My son is 8 years old. His handwriting totally sucks compared to 2 years ago and he struggles with it. His vocal tics are the biggest issue. It's what is keeping him in the autism program at school right now. He could handle being in a self contained class but because his vocal tics are disruptive he stays in the autism class. He also does this strange movement with his legs he only does when he is laying down, or sitting up with his legs out straight. His legs move almost as if he is riding a bike. he will do this in bed up until the second he falls asleep. If he is laying on the couch watching TV, he will do this all night. The OCD comes and goes and right now it's not a big issue and is the least of my worries with him.

Add dermatographism to our list of diagnoses. Grrr....just wondering if anyone else is dealing with this since it can be related to autoimmune issues

I'll have to TiVo this. We've been battling PANDAS unsuccessfully for 2 years now. Dr. Trifiletti, any advice for a kid who didn't improve with IM Bicillin, Zithromax, Omnicef or 16 IVIG treatments?

I think the problem would lie in what states he's licensed to practice medicine in.

Are you going to see Dr. Gupta?

We've been with Dr. Bock for over a year. Switched to him from another DAN doctor. I think we have Bock stumped. I think we have a good yeast protocol in place and even increased it a bit recently. I'm almost wondering if gut bacteria is an issue based on signs in the BMs. I talk to Dr. Bock again next week I think. It can't come soon enough. The last month has been REALLY REALLY bad!! Kerrie

Yes, he has autism, and before PANDAS hit he was well on his way to recovery. He was amazing with the way he was progressing and where he was. He had a full immune work up. We flew from NY to CA to see Dr. Gupta at UC Irvine. My son did IM Bicillin for 4 months. Cycle after cycle of Zithro rotating with Omnicef, and for over year now has been taking zithro 250 mg 2x a week. Any thoughts? Suggestions? the way he's been lately I'm open to an exorcism!!

My son will be 8 in November. We paid for IVIG out of pocket. Insurance wouldnt cover it. Doubt we could get PEX covered and I have no idea what that would cost, but I'm sure it's not cheap.

My son has had 16 IVIG treatments. He seemed to improve around treatments 5, 6 and 7, and then nothing. We increased the dose as his weight increased. No further improvement, and he even worsened back to the point that he was at before IVIG while still on IVIG. After increasing the dose, we gave it 6 treratments before we gave up and finally, we've stopped.

How did it go for you? We own a half share in a chamber and use it for my son with autism. He did WONDERFUL in it until his PANDAS diagnosis. We get the chamber every 2 months. The first turn after his PANDAS diagnosis he started with bad vocal tics a week after we started the chamber so we stopped not knowing if the chamber was the problem since other changes were going on. We didn't use it for the rest of our turn. When we got it back again a few months later, same thing, and most recently at our turn in November, within a week the vocal tics and screaming went haywire after just 2 dives. Our DAN doctor has told us to put HBOT on hold indefinately as strep is an aerobic bacteria and thrives in high oxygen environments, which explains why my son had a huge flare every time we tried to start a series of 40 dives. I hate that we can't use it because he did so well with it for almost 2 years before PANDAS came in the picture

Try the combination of 5 htp and melatonin. Start with 1mg of melatonin and work up. Most kids only need 1 or 2 mgs. That helps them get to sleep. Give 5 htp (tryptophan, the stuff in turkey that makes you tired) to keep him asleep. Many kids taking melatonin alone go to sleep easily but wake up in the middle of the night. With 5htp they sleep through

I'm considering adding Sphingolin to my son's list of supplements since his MBP numbers are so high. Has anyone used this? Can you share any negatives or positives?

Our DAN doctor told us to avoid the HBOT because strep loves the oxygen. The last 2 times we tried the chamber with my son, he had a flare in symptoms within a week of starting.

My son had a PANDAS flare after we starting giving him yogurt, and once when we gave him a probiotic that we didn't realize had S. Thermophilis in it. The body handles strep improperly, and probably can't differentiate between bad strep and beneficial strep. On my autism boards, there are a bunch of other parents of PANDAS kids who all react negatively to S.thermophilus

Run a PANDAS profile www.neurorelief.com its a better indicator. Risperdal is nasty stuff. It is KNOWN to cause, not MAY CAUSE these conditions in children. Tardive Dyskinesia (TD) is a serious, sometimes permanent side effect reported with RISPERDAL and similar medications. TD includes uncontrollable movements of the face, tongue, and other parts of the body. The risk of developing TD and the chance that it will become permanent is thought to increase with the length of therapy and the overall dose taken by the patient. This condition can develop after a brief period of therapy at low doses, although this is much less common. There is no known treatment for TD, but it may go away partially or completely if therapy is stopped. High blood sugar and diabetes have been reported with RISPERDAL and similar medications. If the person being treated has diabetes or risk factors such as being overweight or a family history of diabetes, blood sugar testing should be performed at the beginning and throughout treatment with RISPERDAL. Complications of diabetes can be serious and even life threatening. If signs of high blood sugar or diabetes develop, such as being thirsty all the time, going to the bathroom a lot, or feeling weak or hungry, contact your doctor. Neuroleptic Malignant Syndrome (NMS) is a rare and potentially fatal side effect reported with RISPERDAL and similar medications. Call your doctor immediately if the person being treated develops symptoms such as high fever; stiff muscles; shaking; confusion; sweating; changes in pulse, heart rate, or blood pressure; or muscle pain and weakness. Treatment should be stopped if the person being treated has NMS. RISPERDAL should be used cautiously in people with a seizure disorder, who have had seizures in the past, or who have conditions that increase their risk for seizures. RISPERDAL and similar medications can raise the blood levels of a hormone known as prolactin, causing a condition known as hyperprolactinemia. Blood levels of prolactin remain elevated with continued use. Some side effects seen with these medications include the absence of a menstrual period; breasts producing milk; the development of breasts by males; and the inability to achieve an erection. The connection between prolactin levels and side effects is unknown. Extrapyramidal Symptoms (EPS) are usually persistent movement disorders or muscle disturbances, such as restlessness, tremors, and muscle stiffness. If you observe any of these symptoms, talk to your healthcare professional. Some people taking RISPERDAL may feel faint or lightheaded when they stand up or sit up too quickly. By standing up or sitting up slowly and following your healthcare professional's dosing instructions, this side effect may be reduced or it may go away over time. At my doctor's office there is a child that was on risperdal for 3 months that developed seizures and tics. They stopped the risperdal and months later he still has the condition. They fear it is permanent. I personally wouldn't touch the stuff with a 10 foot pole. SARAH.....you know we were with a DAN for almost 3 years and doing biomed for a year before that and we still suffered the big PANDAS crash, so don't beat yourself up. I blame my DAN for not catching the signs sooner and for my having to tell them to test based on his symptoms. Needless to say, we have a new DAN. Kerrie

Alpha lipoic acid (ALA) also crosses the blood brain barrier. It must be dosed every 3 hours (you can do a stretch of 4 hours at night) for 3 days. When we do oral chelation,my son gets his first dose right after school on Friday and gets his last dose Monday morning. It also supports the liver which is important during chelation.

Kids on the spectrum, many times have latent viral issues. Many do very well on Valtrex. It is a drug for herpes. Many kids on the spectrum had their immune system screwed up by vaccines and heavy metals. Viruses tend to hold metals. Clear the viruses and the metals will excrete more easily. There is a yahoo group called mb12valtrex that covers all of this. If you are doing antivirals you must do antifungals as well. Viral die off causes yeast to flourish Also check out www.recoveryvideos.com Click on Autism Recoveries then Ethan. Watch the video called Ethan's Recovery.

We're actively chelating while we continue IVIG. IVIG will help the immune system but if kids have viruses hiding in their system, which is possible, then IVIG may not help. Viruses hold on to metals too. I know a father who recovered his son from autism with Valtrex. Valtrex took care of the kid's underlying viral issue and then he finally started dumping metals on his own, without chelation. As for us, we chelate. Cilantro as a chelator doesn't thrill me. It does have a high affinity for metals but one has to wonder how many other metals it pulled in from the soil and you are now putting into the body. You also have to make sure you have a good protocol in place to reduce the frequency of redistribution of the metals

I contacted Dr. K but he basically was no help because my son has a "co-morbid" condition of autism He said the steroid burst has no predictibility value for kids with autism and he couldn't recommend IVIG for my son outright. He may be the best but if your kid has autism on top of PANDAS you may want to look elsewhere. If Dr.K has changed his views on that since January I'd be interested in hearing how he feels now.

My son has had 6 IVIG treatments so far and it's been the same thing with each one. We don't really see anything for the first week following the IVIG. For the next two weeks we see nice things, however minor. Bad things go away or lessen, nice things happen. By the 4th week we see some of the bad that has lessened flare up again, we see stuff come back that he hasn't done in months and just strange stuff over all. That week before an IVIG is always a nervous week for us because we never know what'll happen. THis past one though, he didn't have that rough week, it was just a day or two before that we saw the change. My son is currently getting 15g of Privigen every 4 weeks. He weighs 56 lbs. He has one more IV of Privigen then we are switching to Gamunex. Kerrie

Our DAN dr (Defeat Autism Now) had us run the PANDAS profile from neuroscience labs www.neurorelief.com We ran those in November, treated for a few month with Bicillin injections, then tested again. At that time they also ran his ASO and Anti DNase B titers. The PANDAS profile tests for IgG and IgM antibodies to 6 different things, several of them are the anti brain antibodies known to be triggered in cases of PANDAS