evie

I am strongly considering IVIG for my son, however I would like to speak with a few doctors who have experience with this for PANDAS before I go ahead with it. I had a phone conference with Dr. K in the Chicago area, but I am searching for other doctors that have had positive results with the IVIG. Would you mind sharing with me who your doctor was that ordered the IVIG? Were you successful in getting your insurance company to pay for the procedure? I am currently going in circles with BCBS - I can't get any clear cut answers. Thanks, Evie

Has anyone ever heard of the 'anti basal ganglia test'? I was doing some research and came across a post on a forum regarding this blood test. You can view the post over here: http://www.wemove.org/cgi-bin/ultimatebb.c...13;t=000173;p=0 I would like to contact the poster of this thread, but before I do, has anyone ever come across such a thing in the US? --Evie

Thanks Kelly. If you do come across the article - please post. I am trying to figure out which antibiotic will help my son, after trying 5 different ones already. I figured that if I understood WHY it worked, it may help me (or my pediatrician) make a more informed decision as far as which one to try next. I may end up giving him a steroid burst out of desperation, but I'd rather avoid that - if possible. --Evie.

After two months of trying to find the right antibiotic to help my son, I am just trying to understand why antibiotics relieve the symptoms in PANDAS kids. I haven't come across anything online explaining the science behind why it works. Is it some sort of medical mystery, or there some kind of explanation? Anyone? Thanks, Evie

That's pretty much it. Many of us have found that antibiotics help reduce the actual PANDAS symptoms. I find that just the actual exposure to strep for my son triggers a PANDAS reaction, even if he does not test positive to strep with a throat swab. In such instances, the only way we can get him back under control is to put him on a course of antibiotics - strictly to treat the symptoms. We usually find that the symptoms go away within the first 48-72 hours of treatment. The hard part is finding the right antibiotic that works. We have cycled through so many different ones, Augmentin, Keflex, Cleocin, Zithromax - just to name a few. The frustrating part is that even if one worked one time, it doesn't necessarily mean it will work a second time. Good luck with everything. I hope that everything works out! --Evie!

Hi Sara, Welcome to the board. You are in the right place to help you find some answers. Everyone here is just wonderful! As a PANDAS mom myself, I can relate to what you are going through. Just a note on the Keflex. Sometimes you need to try a few different antibiotics in order to find the one that works on improving the symptoms. Zithromax seems to work well on many kids (not on my son, though). Good luck and if you have any questions - feel free to holler! Evie

We actually had bad results with Diflucan. My son was on it it for a couple of months, and we were slowly but surely increasing the dosage to kill all candida. At one point, when he was taking quite a high dosage he started exhibiting really odd behavior in school. (Like getting out of his seat during class and walking along the back of the classroom groping at the walls like a blind man...etc.) I quickly googled the side effects of Diflucan and read somewhere that a small percentage of people do exhibit strange behavior when overdosing on it. Needless to say we took him off of it and all of the strange behavior stopped.

OK, here goes. Born in Brooklyn, married at 19 and settled in NJ. I'm 31 with 4 children (1 girl and 3 boys). I have my own web design business and work out of my home-office. It's been about 7 years now. Love to travel. I've been to Europe quite a bit, but like Chemar, hope to make it to the far east one day. Nice to get to know you all! Great idea, Nan.

Kelly, I just spoke to the woman who guides me on which supplements my son should take, and when I mentioned the steroid burst, she got pretty worked up on the dangers of steroids...etc. Do you know where I can find out a bit more about this?

Welcome to the board LoriB. I am sorry for the difficult times you are having, but as a newcomer to PANDAS you should be aware that it is generally a long road of ups and downs. I hate to sound pessimistic, but unfortunately there are no REAL cures for this disorder. Hopefully your son will outgrow it early enough. I wanted to let you know that I had taken my son to Dr. Trifiletti a couple of years back. I am also in NJ and I had researched a lot before going to him. He was a really nice guy - very knowledgeable, however, as neurologists go, he wasn't into antibiotics - only meds. He had us try Clonodine (a blood pressure medication that controls ticcing) which made my son into a zombie and put him out like a light bulb within 3 minutes. We were not really interested in going that route - my son's tics are generally mild, and so we chose not to visit him again. We've tried other approaches including a GFCF diet, supplements, anti-Candida diets and antibiotics. I can't say that either of them have really worked for us because we still have flare-ups all the time. Now we are going through a rough couple of weeks. I am still working on something to get my son's symptoms under control. I am looking into a steroid burst (as mentioned above - and possibly IVIG. What was the dose of prednisone, DKRESmith? I'm not familiar with that type of treatment. What are the risks and/or side effects of giving cortisone to such young children? Good luck lorib. I hope that all works out for you. You have definitely come to the right place to share and get loads of advice. The people on this board are wonderfully supportive, not to mention full of information.

Thank you all for your emotional support. I wish you all well and hope that this long and weary road that we are all traveling will soon come to an end. I am now actively researching the IVIG idea. It seems like this is some sort of 'cure'. I will keep you all posted. For now we are going to try Zithromax again. I'm keeping my fingers crossed!

Thanks everyone for your responses of support and encouragement. I've heard of IVIG but thought it was an extreme approach. I was just doing some reading on www.webpediatrics.com and I guess I have to do some more research as far as safety and side effects. Maybe this is an idea. I'll also have to check into my insurance coverage. (BCBS). Has anyone else has success other than PANDAS_Denmark? If so, please let us know. I'd love to have more information. Another question: Something I read on that site is bothering me regarding IVIG. Success of IVIG in PANDAS appears to be age-limited. Sometimes during and particularly after the completion of puberty the IVIG treatment is likely to become ineffective. Our oldest patient that has favorably responded to the IVIG treatment was 13 1/2 year old at the time. I was under the impression that the 'P' in PANDAS stood for 'pediatric'. Isn't this something that our kids will outgrow once they hit puberty? (PLEASE!?) Has anyone out there had the experience of their child outgrowing this disorder (or not?). Please share... Thanks, Evie

Thanks, colleenrn for your reply. Actually, that is a good point. He still has his adenoids and tonsils. We kind of felt that the strep was lurking somewhere - although we didn't think it was in his tonsils - he is generally negative on a throat swab. We can't seem to eradicate it whatever we do. I do have an appointment for him at a top ENT in NYC early April. My younger son who did have his tonsils and adenoids removed (not a PANDAS kid - but chronic strep and snoring) has a follow up and I decided to take him along to see what he has to say. The ENT did suggested removing his tonsils. He said many PANDAS kids are helped in that way. If anyone here has had positive PANDAS results after removing their child's tonsils/adenoids- please let me know. It might help me to make an informed decision when I go for my appointment with him in a few weeks. Thanks!

Hi All, It's been a long while since I've posted. I'll update you quickly. My 9 year old son has had PANDAS for just about three years now. For the first year and a half we tried all different medical approaches - loads of antibiotics, Zithromax, Augmentin, Keflex...to name a few. We did see improvement at times but we got to the point in which antibiotics were not working to alleviate any of his symptoms anymore and my son was VERY sypmtomatic - ticcing (mainly eye blinking), VERY irritable moods, out of control behavior...etc. Out of desperation I tested him for a gluten and casien intolerance (Entero Labs) and the results were as I expected - he tested positive to both. I was very overwhelmed, but we have managed to pull through and we have kept him on a GFCF diet for about 18 months now. He is also taking a variety of vitamins (by Shaklee) - I am being guided by a woman who works side by side with a DAN doctor. Well, I'd love to say that we have had only smooth sailing since, but truthfully - we've had MANY ups and downs - more downs than ups. He is constantly being exposed to strep - it is very rampant in the neighborhood that I live - my kids and all of the neighbors kids are constantly coming down with it. He generally tests negative with a throat swab, but his titers are always high. Every once in a while, when he slips back - we go ahead and give him a dose of antibiotic to relieve his symptoms. Our trick is finding the right one for him. We have cycled through many different classes and not always do they work for him - even if it did work the previous time. The DAN doctor does not like the idea of keeping him on prophylactic antibiotics - due to yeast and other factors that she feels are not good for him. Recently, he has been miserable the past 6-7 weeks. His ticcing is really bothering him, he can't concentrate in school (he usually does very well in school when he is not 'PANDAS-like'.) Not to mention, he is making life extremely difficult for all of us at home. He is impossible to deal with! He is complaining about the diet and taking his vitamins is a MAJOR battle every day. Overall, I got to the point in which I decided to put him on antibiotics. I went through 4 different medications: Amoxil, Clyndamycin, Keflex, and now he is still on Augmentin. We actually saw an initial improvement after 48 hours of the Augmentin, but it came and went - and as of this morning (day #7 on Augmentin) we are back to square one. Right now I am calling out to all of you for advice. How can I get my son back? I don't know what else to do. This morning I spoke with a pediatrician (not my own)that I sometimes consult with regarding PANDAS and she recommended Zithromax. I will probably try that next, but I know we haven't had great results with it in the past. I am really desperate. If anyone has any ideas for me I would greatly appreciate it. I feel like the whole diet and vitamins have been for nothing.... Please help! Evie

Has anyone had any experience with Tabacum - a homeopathic remedy? I was told that this would be calming for my son (PANDAS) and would help lessen his tics and improve his mood. I've read a bit about it online and whatever I've seen doesn't mention anything about tics..etc. I'd appreciate any info. Thanks!

For the record, my nephew, a mild PANDAS kid, did have his tonsils removed, but there was not much of an improvement. It seems as though the strep has found a new place to linger - it could be anywhere in his body. His antibody levels are still very high, and he still has his symptoms which improve on antibiotics. I don't know if removing the tonsils is THE solution. I think it just diverts the strep elsewhere. It's interesting that many PANDAS kids have sinus/adnoids/ear infection problems. I believe that it's an allergy or food intollerance that is the root of the autoimmune problem. Good Luck with your son!!

My son was put on Diflucan. He is taking tiny, tiny doses and slowly increasing them week by week. I can't say that I see a major difference yet - it's been about 10 weeks already (we started this at the same time that we went GFCF). I was told that once the candida is pretty much gone, that's when I should really see the results that I am waiting for (less ticcing and better behavior).

Thanks Claire and Kim for your response. I've been reading all about the enzymes today, and I printed out some articles to show to my doctor. I hope that this may be an answer for us, although even if I were to stop his diet and try the enzymes I wouldn't really know if it is helping because I still see no major results on the diet. Could this be a better option than the GFCF diet? Did anyone see an immediate reaction as far as a decrease in tics or an improvement in behavior soon after using these enzymes? Also, do you give them to your kids along with other supplements? My son is currently on a couple of other vitamins and probiotics as well (garlic, calcium, magnesium, zinc, acidophillus...to name a few). Thanks, Evie

Thanks for all the info. I spoke with my son's doctor about the enzymes, and she told me that she doesn't think it would work for my son as an alternative to the GFCF diet. She said that there are many people on the GFCF diet for other reasons than being intolerant to 'gluten and casein' specifically. For example, as you have mentioned the autistic children, or some who are sensitive to wheat (but not the gluten) or the lactose in dairy products (but not the casein). For those people out there, digestive enzymes are a great alternative solution, because it is targeting their problem. In my son's case, we had a positive result for gluten and casein specifically, and in that case, digestive enzymes won't really help him out. Oh well, it was a nice thought for a moment. Did anyone actually have positive results with the enzymes after being tested positive as intolerant to gluten and casein - not just an IgG test for wheat or dairy, etc.? We used the stool test at enterolabs to test for his sensitivity and his numbers came back really high, so I do know that it's the gluten and casein that are his issues - not just a problem digesting wheat or lactose... Thanks, Evie

Daniel and Claire, This is the first I've read about the Houston Enzymes and I am hoping/wondering if this may be an alternative to the GFCF diet that my son is on. Do your children take these enzymes instead of the GFCF diet, and is it as effective? My PANDAS son has been GFCF for two months now. I can't say that I see any encouraging results yet. We have yet to see his tics decrease and his once extremely difficult behavior is so-so right now, which could also just mean that he is at a 'waning' period - not necessarily that it's the diet that is helping. The only tangible evidence that we do see is that his chronic diahrrea has greatly improved. He is finding the diet quite difficult, however we are going on with it even though I can't say that this is the 'miracle solution' here. I don't feel like giving up just yet. The hope that there may be an alternative solution with the enzymes is really exciting. I checked out their website, but can you please give me first hand information about their products? Thanks! Evie

We recently started my son on Diflucan and were giving him tiny amounts at a time beginning with .5 ml daily and upping that by another half a ml each week to a final amount of 3 mg. This past week has been a setback with him, particularly with bedwetting, and last night he had a severe accident - a bout of diarrhea at a wedding (in his suit!!). I spoke with my Dr. and she said that the yeast 'die off' is setting him back, and that we must have been going to quickly or giving him too much with the amount of Diflucan. What's the average dosage that any of you have been treating your children with (he's about 52 lbs). It's interesting that you mention loss of taste - he's been complaining that his food has no taste lately, and he's oversalting EVERYTHING! Is this something that's a side effect of Diflucan in particluar, or is it the bodies reaction to the yeast die off? Thanks!

I use the Shaklee brand (www.shaklee.com) called "osteomatrix" for my son. It has Calcium, Magnesium, Zinc, Copper, and more. When looking at the ingredients label though, it does say that it has mag. oxide. Why should this be avoided?

I'm having the same issue as you deagar. We took our son off of gluten/casein about 5-6 weeks ago, and we have still not seen any improvement in his tics or difficult behavior. I believe I came across a few posts here which mentioned that they saw results within a few days of eliminating the foods that their children are sensitive to. I am wondering if this is helping and I should continue to wait it out or should we just give this up....

So what's the bottom line? Do we avoid vaccinating my son. Actually, my doctor uses the inhaling type of flu immunization, bit I assume that it's made up of the same stuff...

CKJ, I agree with Kim. The celiac bloodwork that my pediatrician did six months ago also came back with a false negative. It was not until we used a stool test (a fairly new approach) from Entero Labs (www.enterolab.com) which came back with the positive results, that we felt we finally had our answer. you can order this test yourself, although it is quite expensive. A gluten intolerance, aside from stomach issues, can also cause autoimmune diseases - which is what PANDAS is. We hope that by sticking to the diet (which is tough!) we should see improvement in our son shortly. Good Luck!