Stephanie2

I definitely fell into this category up until about 6 months ago when I treated myself to a very expensive integrative medicine doctor. He whipped me into shape pretty fast (better energy, better ability to cope with stress, less depression, etc.). I still have a long way to go (like eat dinner, go to the gym, etc.). I always wonder how many years of life I will lose in the end due to my boys' health problems. It has taken so darn much out of me!

I wonder if it is more likely to happen to the sib if they are boys? Does pandas occur more in boys? All I know is that both of my boys have it and they both developed it very young - 18 and 15 months. I guess what I mean is that if you have a child with autism and then you have another boy, you know to be extra vigilent. But if you have a girl, you may be in the clear. I wonder if it is the same in pandas.

Here is what we use for inflammation: gluten/casein free and food elimination diet/Feingold diet/organic curcumin (Enhansa) Spironolactone (also for immune modulation) LDN (low-dose naltrexone - also for immune modulation) Vit D Vit E

By the way, I have found that Oil of Oregano completely eliminates warts but you have to keep giving it or they come back... Lynn, I had to post! My son is having a huge relapse with PANDAS, so I have been back lurking trying to find out how to help him this time around and I noticed something you said. "eliminate a plague of warts that DS had" About a month ago we noticed my son has little warts growing. In is arm pits, shoulders,tops of feet, elbows, and knees. Is there a cause for these that you are aware of?

Lynn, did he specifically say why you should not use them together? I am just wondering b/c if it is that the OLE will reduce efficacy, then that's a problem, but if it's b/c he is afraid that the combo will affect LFT's (liver) then I am not so concerned b/c I have my boys' LFT's done regularly and I use Milk Thistle for this...

According to our DAN practitioner, Aug/Sept and Jan/Feb are the biggest times for strep ("strep season"). I can go back all the way to when my son first developed pandas 5 years ago and he was always a handful in Aug and Feb. No exceptions! This was before I knew of pandas. Trust me I am up in arms right now. Maybe since your son is on a prophylactic dose of abx he is does not have a strep "infection" per se, but maybe he is constantly being exposed to it at this time... Last year my son tested pos on the rapid strep test on Aug. 16, 3 days before school started!! He was a mess starting school. I am being quite diligent this time around, but we are all a year smarter, right? Best of luck, and don't forget about ibuprofen!

fuelforall, So this is not your original pandas child? Are you saying that this child also has pandas? sorry to hear that, but I will say it is easier second time around, you already have the dx, the knowledge, the MD's. Just a matter of going through the motions again. Keep us posted.

I use a rotation of OLE, Oil of Oregano and Advanced Biocidin. Can someone give me some more info on why OLE/OoO reduces efficacy of antibiotics?

Ok, last point then I need to get something accomplished while ds2 is taking a nap. Yeast and bacteria are created by the high dose abx, so probiotics are VITAL to managing these infections. You won't necessarily "see" yeast or bacteria, but believe me they are there if you are using high dose abx. I have become good at spotting the signs that these infections are creeping in and I call the DAN who puts them on diflucan for yeast and vancomycin for bacteria (my boys tested pos. for klebsiella and clostridia). No point in treating one infection and creating another. We use 500 billion cfu's of probiotics each day per child. 250 am and 250 pm. 1.5 hours away from abx. I'm with you Tmom, but not sure where Omega 3's are involved in building the immune system. Even if they were, how do we know it's a good idea to mess with the immune system? With H1N1, anthrax letters, bird flu etc., do we want to mess around with things that hurt the immune system? Omega 3's in HIGH DOSE that are extremely pure nearly as strong an anti-inflammatory agent as prednisone. All of this without putting a damper on the immune system. Prednisone is like a thermonuclear bomb. It will definitely kill the bad guys, but it also kills the good guys. And... the effects are bad long-term. I'm not sure mega dose of Vitamins such as C and D are advisable in children. You can actually cause scurvy after taking yourself off of mass doses of C. I'm not sure what the toxicity of Vitamin D is, but I'd be careful about this. My take on this is: don't worry about the immune system. Leave it alone. Don't mess with it unless absolutely necessary. Omega 3's will not affect the immune system one way or another. Please read Omega RX by Dr. Barry Sears and the Anti-Inflammation Zone. Available used from Amazon for less than ten dollars.

Have to disagree with you here. My son, and many other children, when tested, have shown to be low in Vit. D. This can be quite dangerous and create a situation where the child cannot fight off dangerous infections. Our DAN practitioners have done wonders in my kids with immune-boosting vitamins/supplements. No more asthma, no more severe allergies, hives, chronic ear and sinus infections. I'm not saying that you should give your kids "echinacea" which can overstimulate the immune system, but things that support the immune system are so vital. I'm with you Tmom, but not sure where Omega 3's are involved in building the immune system. Even if they were, how do we know it's a good idea to mess with the immune system? With H1N1, anthrax letters, bird flu etc., do we want to mess around with things that hurt the immune system? Omega 3's in HIGH DOSE that are extremely pure nearly as strong an anti-inflammatory agent as prednisone. All of this without putting a damper on the immune system. Prednisone is like a thermonuclear bomb. It will definitely kill the bad guys, but it also kills the good guys. And... the effects are bad long-term. I'm not sure mega dose of Vitamins such as C and D are advisable in children. You can actually cause scurvy after taking yourself off of mass doses of C. I'm not sure what the toxicity of Vitamin D is, but I'd be careful about this. My take on this is: don't worry about the immune system. Leave it alone. Don't mess with it unless absolutely necessary. Omega 3's will not affect the immune system one way or another. Please read Omega RX by Dr. Barry Sears and the Anti-Inflammation Zone. Available used from Amazon for less than ten dollars.

OK, despite my best effort I have been sucked into this thread!!!! LOL! Couple more points: 1. I LOVE Oil of Oregano for strep, yeast, viruses, warts, you name it. powerful stuff. 2. I also want to mention that my husband and I have found that sleep is a MAJOR immune-modulator/anit-inflammatory. I put my boys to bed at 6:00 (2 year old) and 6:30/7:00 (5 year old). We have come to realize after learning the hard way, that pandas-type symptoms creep in the next day if we don't stick to this strict bedtime routine. I recently kept my son up until 11:00 pm and I am not exagerating that he was a complete nightmare/train wreck the next day. I know all kids have trouble with sleep deprivation, but it is specifically pandas behaviors that increase (tics, adhd, ocd). we find sleep to be so powerful that we will arrange any and all plans around their sleep schedule. We don't even do sports which will get in the way (which is pretty much all sports). 3. I really believe that inflammation can be decreased with diet. Like they say, shop around the outside of the grocery store. decrease red meat, increase fish/lean chicken, etc. tons of fruits/veggies, no packaged foods with trans fats, bad oils, etc. I am having a hard time with this one, but slowly working in the right direction. This can be a vicious cycle b/c I find it is impossible to get my 2 yo to eat fruits/veggies while in exacerbation b/c of the texture. I am planning to purchase a juicer and I will literally syringe it into his mouth next time that happens b/c I believe so strongly in this... I am not done reading this thread, I'm sure I will be back with more to say! Emerson, Glad to hear you are on this forum too. I have been worried about you actually as you are looking for a new doctor. Omega 6 oils are "poisonous" from an inflammatory standpoint and will really affect your PANDAS in a bad way. Corn oil, canola oil, and all vegetable oils EXCEPT for Olive Oil cause massive inflammation. Cut all of them out of your diet immediately. (Including Doritos, Cheese Nips with Omega 6 trans fats mixed with pure carbohydrates - death food for inflammation) Use only Olive Oil and Butter. I personally buy Omapure IFOS certified Fish Oil at $20 per bottle of 120 capsules. You buy them in lots of 10 to get this price. For your condition, I would take 15 capsules of Omapure per day which is an Eskimo dose. This will dilute the Aracidontic Acid (AA) which is causing the inflammation in your brain. The EPA in pure Omega 3 IFOS fish oil can only dilute AA which will result in decreasing inflammation. If you get on this fish oil and go off of it for two weeks remember that you will return to your previous inflammation state. If you quit, you go back in other words. There are other benefits to the fish oil, but you'll know them soon enough. Please stay away from useless flaxseed oil, Omega 3,6,9 supplements and other brands of Omega 3 which are not 2/1 ratio EPA/DHA and IFOS certified for pharmaceutical grade. The best you can get is OmegaRX by Dr. Barry Sears. Get the liquid oil if you can afford it. Sears' products are the state of the art. I am not sure why Blake is on Concerta. Her pediatrician keeps her on it because she was misdiagnosed with ADHD. She will fail out of school if she is not treated for this. When she is treated she, like Sammy, gets perfect grades. I'm not sure how I feel about this... good grades... malnutrition on the other hand. It's hard to worry about school with PANDAS, but I'm not the custodial parent here. I am winning a slow, but difficult battle with her mother for recognition of PANDAS cutting edge treatment. Blake's mom thinks I'm in this because I'm overreacting. She sluffs off the strangest behavior as normal when it is PANDAS. It's been a real problem.

I wish I had time at the moment to read all the responses to this and to thoroughly respond myself. But I will say this. I believe that my 5 year old responds so well to zithromax b/c it si so anti-inflammatory for him (also modulates the immune system). when zith fails and we suspect strep, i switch him to augmentin. going to experiment with only prophylactic abx soon. Also our DAN practitioner recommended that we bump up the fish oil for the anti-inflammatory effect as well, something about it being a PPAR agonist/antagonist? I can't remember, but he said it would work similar to Actos. We also use Enhansa, a curcumin supplement for anti-inflammatory properties. I also want to mention that both of my boys have pandas and they have responded tremendously to spironolactone and low-dose naltrexone. these are safe meds which a re used widely withing the autism community for pandas/autism. they each have an immune-modulating effect, as well as anti-inflammatory properties. also, when all else fails we start with a "motrin protocol" (full-dose motrin every 3-4 hours, while awake, for 3 days at first sign of pandas symptoms). Lastly, steroid taper has helped my 2 year old, and one infusion of IVIG (1 g/kg) helped my 5 year old. You are definitley on to something, and yes I agree there is something more to it than the fact that abx just treat strep. there are other infections that trigger pandas symptoms, yet the abx seem to help with that too.

Before i knew my son had pandas, I used to try to fight the separation anxiety. NOTHING worked. It was all a wasted effort, a battle that took a lot out of me. It wasn't until we got pandas under control that the separation anxiety (including sleep issues) resolved. So, personally, I wouldn't fight a battle that I can't win. Secondly, I just wanted to let you know what helps my pandas ds2 sleep: spironolactone (immune-modulating drug), melatonin, and when he enters a brief exacerbation I give him ibuprofen 30 minutes before bedtime. Best of luck. The sleep issues are the worst! As if we don't have enough to deal with during the day!!

I recently started both of my pandas sons on curcumin and I do feel that it has helped reduce inflammation. I get Enhansa brand, supposed to be highly absorbable.

Hi Mom MD Just wanted to tell you that my boys have been gluten and casein free for 1.5 years now. It took 2 months of research and trial and error before I could get it right and before I could get compliance with my older son (younger son was only 13 months). For my 5 year old I did notice a difference in tics/hyperactivity (although looking back, maybe he was just coming out of an exacerbation at the same time...?), and for my younger son I believe the diet is one of the key elements of our DAN protocol that pulled him out of the strong early signs of autism that we were seeing back then. It seems like you have done your research on this. I have never fully understood the "spectrum" of gluten allergies/sensitivities/celiac etc. But I thought I would give you my 2 cents on what I know. Gluten can create an "opiate" effect on the brain for some children. The way it does this is if the gut is "leaky" it allows the whole gluten protein to absorb into the body without being broken down into individual amino acids. Protein is not supposed to enter the body like that and it goes to the brain and exhibits the opiate effect (as does casein, and in some children soy and corn). This is the very unscientific explanation of the opiate effect! LOL! Then there is the issue of molecular mimicry, where gluten actually causes the body to attack itself. the body creates antibodies to gluten and attacks the gut, creating even more permeability, thus more leaky gut. again, unscientific here! In gluten sensitivity, the person tests positive on an IgG food allergy test. This type of sensitivity would create inflammation. Then there is plain old IgE allergy to wheat (can you be IgE allergic to gluten? I have no idea) Lastly, there is celiac disease...which i don't understand and quite honestly my 2 yo may have this but i would have to take him off the diet to get an accurate result on the celiac test. I know there is probably a lot more to it, like I said I just don't have a full grasp on the whole gluten issue. I just know that the diet has had several positive effects on my boys and our DAN practitioner (Scott Smith) recently told me I shouldn't take them off the diet (even though I am dying to!!). I say give it a try. If you are anything like me you want to maximize their ability to function in this world and if the gluten free diet is going to be a piece of the puzzle, they will thank you for it in the end! If anyone has any corrections to any of this...feel free!!

I contacted Shelley to see if she "minds" me attending her meetings (since I am with the "other" organization) and she did not get back to me. That is why I did not attend her meeting. I know that Beth is not interested in the two groups combining in any way, but I just wanted to go to connect with other moms. I also invited Shelley to attend my meeting and she did not respond. Did that come up at all? I will see you tomorrow!

Again, answering in all caps: (one of these days I will figure out how to do that multiquote thing!LOL)

I'm going to answer your questions in all caps within your message:

Yeah, I would say that pretty much sums up the chaos at our house! Yesterday, DS5 had a transient screaming tic/compulsion, and DS2's ears happen to be very sensitive lately. So you can imagine the scenes at our house (DS5 screaming, DS2 covering ears screaming back, which stimulates more tics, more screaming, yada yada...). Ay yi yi!!! LOL You do just have to laugh (although, if it's that time of month I'm more likely to cry - hahah!)

I could be wrong, but I am under the impression that they add it to energy drinks to combat the anxiety/hyperactivity that some of those "stimulants" can create. If it helps, I give my boys Taurine to combat the anxiety/hyperactivity that is created by their TMG supplement. And it works. Now, how it affects pandas, I have no clue. I will say that I have several friends who use it for anxiety and they say it is great. I think l-theanine is good for that effect, too.

check out "gfcfkids" group on yahoo. There are plenty of people there that will answer your questions! Some of them are knowledgable about pandas, too.

Many doctors who treat the underlying medical problems associated with autism/aspergers have found that some of our kids have PANDAS as one of their underlying issues. Look for a DAN doctor (Defeat Autism Now) who specializes in PANDAS (off the top of my head: www.icdrc.org, and Dr. Lin in California - don't know contact info)! Also, check out this website and become a member to get a list of MD's: www.pandasresourcenetwork.org

a 10 day course of pen vk would not be enough to diagnose pandas, especially when the predominant symptom is tics. tics are the hardest symptom to get rid of. if you are looking for a diagnostic tool, you should get a good pandas doctor on board and do a steroid burst or taper. most likely you will see the tics remit and that will tell you that they are due to pandas (and it would also tell you that IVIG may work).

I don't know how to delete cookies either, trying to enter data for my 2 year old.

This is why I am always pushing my (or ANY) DAN practitioner on people! This is exactly what they do!! BUT it has to be a DAN doctor that knows how to treat PANDAS. My first one was not willing/able to treat PANDAS, adn although he was very helpful in other areas, I had to ditch him and go to Scott Smith, PA.