pmoreno

From what I understand, steroid bursts are more diagnostic tools to prove that the children would respond (with something decreasing the inflammation in the brain). However, I hear it's very temporary (well, at least it was for Gaby - she had a dramatic improvement after 5 days of it, but that only lasted 1 or 2 days - then she was back to the same PANDAS situation) Steroids are a real problem as long term treatments and if they only work temporarily as long as you're taking them, then I guess, what's the point. As far as the zith goes, Gaby has been on it for 4 days now and although she is generally mild mannered, she had some serious outbursts during these days (one was where she was quietly playing with her stuffed animal and all of a sudden she whirled around and shrieked out loudly "stop it" at the air). This is not typical of her PANDAS picture. Some people who have posted here have described some aggressive behavior on zith - they might be right. I decided to try it only to rule out that maybe the augmentin wasn't working. So far I have not seen any improvement in behavior on the zith versus the augmentin, so I believe that Dr. K was right when he said that he didn't think her behavior was indicative of a current infection, but rather just residual fallout from the past and part of the very slow long healing process. Pat

Linda, I still don't have the results because I was not able to successfully collect her urine until last Saturday. I believe it takes at least 5 days for the sample to ship and then another week to get the results, so I assume I have another week to wait. I am very interested to see the results for more than one reason. I still believe the kavinace could be helpful in having an overall calming effect, but I am more interested now in finding out more about LDN (low dose naltraxone) This may be the answer for some of us. It supposedly is a new but very effective treatment for autoimmune disorders. It blocks some of the opioid receptors in the brain and causes increased production of endorphins which regulate the immune system. It has been found to be effective in some cases of autism, MS and other immune related diseases. There apparently are no side effects, no toxicity - the efficacy is related to the dose - in other words if you use too little it doesn't work and if you use too much it doesn't work. In adults it has been found to be effective at about 3 to 4 mg. daily. A leading researcher and doctor who uses this exclusively with all of her patients recommends 1 1/2 mg for smaller children to 3 mg for average children. She has it formulated by a compounding pharmacy into a cream that is applied topically, but it can also be given orally, although it has a bitter taste, and for that reason, she finds that there is more compliance in children with a topical patch. It has been used for many years at higher doses for other illnesses and is approved by the FDA. In higher doses there have been no negative side effects reportred even over the long term, but there is not much evidence out yet about the low dose uses because this is relatively new. Although the kavinace does help (kind of a bandaid effect - since it calms down the situation but doesn't exactly do anything to reverse immune dysfunction), but the LDN could actually reboot the immune system & regulate it which gets to the root of the problem. I'm not sure, at this point, if you can use the two together (kavinace & LDN), or if it would even be necessary to do that. When I get my results back for Gaby, I will be talking to the doctor in Florida about all of these issues and I'll keep you informed. By the way, this medication is very inexpensive in the low dose formula (which is probably the reason that the drug companies don't go out of their way to promote it - they make more revenue from other illnesses). Look it up in Wikipedia. Pat

having read the link, now I understand that they're referring specifically to corn oil and not necessarily to just "corn". I suppose that's a possibility, but on a personal note, I've always cooked with olive oil exclusively and am not aware of using any food product that has a high content of corn oil and yet my daughter has PANDAS. the theory about the mitochondrial dysfunction makes a lot of sense, though. It would explain why some kids react negatively to the vaccines and others don't. There has to be some underlying genetic predisposition or else all children would have some disorder related to the vaccines. It also makes sense that with the mitochondrial dysfunction a child could develop such a disorder (autism, PANDAS, speech delay, PDD, etc) from a variety of environmental triggers ie., live viruses in vaccines, herpes viruses, strep infections, etc. Possibly the reason that it is most evident after the vaccines (particularly the multiple vaccines and after being vaccinated with several vaccines over a short period of time) is because obviously the immune system is overloaded at that time. Again, why do some kids get strep or other infections repeatedly and then one day develop PANDAS? Maybe it's the particular strain, maybe its a cumulative effect, or just the straw that broke the camel's back. My daughter's PANDAS started immediately after a particularly lengthy and severe viral infection which culminated in an unbelievably large number of herpes simplex lesions inside and outside of her mouth. It would be no surprise that such an assault on her immune system would trigger something (if she had an underlying mitochondrial dysfunction). Does anyone know if there is an easy way to test children for mitochondrial dysfunction? Pat

in response to the hypothesis that corn could be causing the problem with autism in our kids - that's pretty far-fetched to me -unless I see some evidence or that our corn has been genetically altered. Mexico, whose people eat tons of corn every day in the form of tortillas and other dishes have almost no autism to mention - so how can corn be blamed? There is so much speculation about this and that - thimerosol to blame - or the number of vaccines at one time (which is more likely) and now the food factor. What needs to be done are some serious studies, using controls, so that once and for all we can have some answers - the mainstream medical community just wants to dismiss the vaccine connection because, according to them, there are not enough reliable studies out there that prove this (usually not enough subjects or uneven ratio of target groups and control groups). I think there need to be studies done comparing kids from countries where no is relatively no autism to the kids in our country and size up the differences. Pat

Gaby started on 200 Mg. per day for 6 days on Sunday. I'll let you know if it works. Pat

Thanks for all your input. In the meantime, I've done some more research on this - and here's what I've found out. Lysine is good, but will do nothing to shorten a herpes outbreak once it's started - you have to take it long-term and the problem with that is that it counteracts arganine (another amino acid) which is good in terms of preventing herpes, but bad in the long run as far as a balance goes since arganine deficiency can bring about some issues of its own. Some of the meds out there like acyclovir or valtrex just shorten the symptomatic period, but are not recommended for long term use because of their side effects and they have not been proven to be that effective as phrophylactics - they've even found a couple of acyclovir resistant strains of herpes recently - not good. Abbreve is very good (from personal experience with Gaby). It's a little pricey $17 a tiny bottle, but lasts forever. The trick is to put it on the very moment that they complain of a tingling or itching sensation on their lip. However, this is all just superficial - trying to combat the symptoms once they're there. I have found that the most effective natural and safe way to keep herpes at bay (and there's absolutely no cure for herpes at all, period!) is something called red marine algae - I got it at Whole Foods - will give her a capsule a day for starters - maybe that would be enough - it interferes with the way the virus replicates, I think - google that, you guys & see for yourselves. Pat

As many of you here probably already know, PITAND (pediatric infection triggered autoimmune neuropsych disorder) Has a little bit more to do with viral infections than with strep, but kids can actually have both - in other words, they can have a strong immune response to strep and also a strong immune response to viruses. I am beginning to wonder if Gaby doesn't fall more into the PITAND category than PANDAS. When she first displayed symptoms it was a year ago after a severe viral infection with a fever lasting a week and a negative strep culture. She's never had a really huge ASO or DNAse B titer. She did have strep last summer (during her perfectly normal 3 months) and did not have any PANDAS symptoms - we found out by accident that she had it because her twin had symptoms, was being checked, so while Gaby was in the office too, she got the swab test and it was postive. She was treated with abx and we had no issues. It wasn't until a mild viral infection at the end of July that she actually started with her PANDAS symptoms again in August. and has had them ever since. She had a really good response to IVIG within the first few weeks (indicating that it probably helped a lot with the inflammation in the brain, then even with prophylactic abx - augmentin-, she slowly slipped back to pre-IVIG behaviors. Some of the people here on the forum state that the abx seems to make their kids worse, and others say it makes them better. I think that may be because the ones who are worse may not actually need them - their symptoms may be brought on more by viral than bacterial triggers, whereas the kids who benefit from the abx probably are triggered more by bacteria. Again, that's not to say that kids can't be triggered by both. I'm realizing by reading on these forums that although these kids have a common denominator - their PANDA-like symptoms - the triggers can be so different for all of them and their specific reactions can also be very different - from mild to severe responses. It would be a shame to have kids on endless antibiotics (along with all the side effects - including yeast) if some of them might not even be triggered by strep, but rather by viruses. There is a blood test called D8/17 which is a marker for strep exposure and the level of antibodies produced. Gaby did have this and it shows that she did react to strep so I believe she is probably triggered by both viruses and bacteria, however, I see more of a change in her after a virus (especially with these reoccuring herpes simplex lesions that she gets at least every other month. She had a huge outbreak (first time ever) inside and outside of her mouth in the week before her PANDAS symptoms originally started, then had them once or twice a month for a few months, and now about every other month. I've tried natural anti-virals like raw, crushed garlic, cooking with coconut oil, but unfortunately it has not been effective in warding this off. Not sure if long term use of acyclovir would be an option. Any ideas anyone? Pat

I guess that would depend on whether the strain of strep she gets responds well to augmentin. Dr. K always prescribes it. We've been on it for 2 months. Her ASO titer remains slightly elevated - but not huge (311), but have heard a lot of stories about azithromycin being able to go intracellular and kill the strep that hides in biofilms. Have started zithro for 6 days this morning - but oddly enough she got a little agitated during the day. Not sure if this is what other forum members have been talking about - Many have said that the zith seems to make kids have a "nasty" attitude. Anyway, too early to tell - too late to stop now - don't want to stop the abx before the end of the 6 days now because it could cause more problems if some resistant bacteria remains. After we finish out the course, we'll go back to the augmentin long-term. I have a feeling that her problems are less related to strep right now than viral issues. I will be posting a new thread on PITAND Vs PANDAS. Pat

I guess I would be less concerned about the occasional 200 mg. of motrin than the nightly 50 Mg. of benedryl. Is that something you absolutely have to use with everything else for him to sleep? Try it without it for a couple days to see what happens. Maybe the other things are enough. The melatonin supposedly helps to get them to sleep quickly, but doesn't stop them from waking later in the night. Don't know enough about the somulin to say anything, but I guess it might be worth trying without the benedryl. BTW, had you thought about doing a neurotransmitter profile just to see what his serotonin, dopamine, histamine, GABA, epinephrine & norepinephrine levels are? There are a few others that are considered to be useful, but those that I listed are probably most important. Anyway, once you do that, you might be told that he could benefit from kavinace which balances everything and someone else had mentioned calmPRT (both are by neuroscience). I most likely will start Gaby on these once her results are in from the tests. I'm sure she'll need them, but I do want the results in hand before I start her on anything else.

Same thing with us. Benedryl just made her more hyper and anxious - couldn't sleep at all - when the psychiatrists originally tried trazadone - didn't work & the higher the dose, the worse it got. But when we occasionally gave a motrin, she seemed to fall asleep easier. Of course, you wouldn't want to do that on a nightly basis. We just gave a 200 mg. tablet. Pat

Does that mean that you just give it when he needs it? In other words he is not on it continually? How long have you been doing this? I've just heard that one needs to stay on it prophylactically for some time to avoid actually getting an infection - it supposedly is better to prevent it from even starting, than taking the abx after the fact and trying to do damage control. What are your thoughts? Pat

It has been 2 months since Gaby's IVIG and although the first 2 weeks were awesome (with 80% remission of symptoms), I have to say that she has now been in a holding pattern for the last month or more with behaviors that are not as bad as her first episode last year, but a little worse than what she was having just before the IVIG. I am not seeing these periodic episodes that are supposed to be like "turning back the pages", but rather consistent behavior that is spacey, difficulty concentrating, following simple directions, very poor memory, inability to perform academically close to her age level, talking to herself, occasional outbursts of anger or paranoia, continued waking periods at night. She has been on augmentin prophylactically since IVIG, but I think we'll switch to zith this weekend - her ASO titers were 311 (with a normal ref. range of o-250) just a little less than she had about 3 or 4 months ago. Not sure if its strep exposure that's keeping these symptoms around or just that IVIG was not really effective for her. I've heard some people say that even with the higher doses, you get good relief for short periods only (since IVIG has a half-life of only 30 days). Although, Dr. K does seem to think that this is a long road back to recovery and eventually (maybe within a year) we will see everything clear up. I hope so, but am not terribly optimistic at this point. I was really expecting that things would slowly, but steadily improve, with just a few bumps in the road here or there. I am going to try the zith with her, even though some people have posted on here that they've had good luck with it in the beginning and then with exposure the symptoms seem to come through again. The thing is, she really hasn't been sick since August when she had a mild upper resp. infect. that preceded the PANDAS symptoms coming back. Since then - not even a sniffle - not an allery - nothing. The other thing that I will try probably within the next week or so is the kavinace, which I've heard so much about and which really makes a lot of sense. I know that it won't actually fix the problem with the immune system, but if it will at least balance the neurotransmitters, it should decrease anxiety and that's half the battle.

How long has she been on the Clarithromycin? And how long has she been on diflucan. Diflucan can be a pretty nasty med. I remember when I was on it several years ago after having my normal flora wiped out by 2 courses of abx, I thought I was dying, the diflucan made me feel completely out of my body, irritable, depressed - don't know how to describe it exactly. I've heard that clarithromycin & zithro are supposed to be pretty good at getting at resistant strains of strep versus augmentin, for instance. My daughter is on augmentin now and her ASO titer last week is elevated (not huge, but about the same as it was 3-4 months ago when she started having symptoms again. So I'm switching her to zithro this weekend. We'll see what happens, but I'm a little discouraged to hear so many people post here that even with being on it, they are seeing symptoms when there is exposure. I just don't get that - I mean what's the point of being on an abx if you still react to the antigens? Pat

Sorry, I just checked my earlier posting and the mom who had replied mentioned that it was travacor that did not work well with the kavinace - not calmPRT. I don't know much about the calmPRT, but will read up about it and see if it is something that could be helpful along with the kavinace - but I definitely think the kavinace has got to be the answer - am looking forward to getting it for Gaby. Pat

Linda, that is amazing - I have been working on this for several weeks now, researching about neurotransmitters, GABA & dopamine in particular. I knew that these things really influenced sleep, mood, OCD like symptoms, anxiety level, etc. I had been waiting for my test kit to arrive and then I've had trouble collecting the test for Gaby because it's very difficult to get that 2nd morning urine (2-3 hrs. after waking and not being able to drink or eat) - First, she had sneaked some toast when I left her in the kitchen for a few minutes by herself, then on another day she just couldn't pee again after having gone when she first got up - its been difficult. I had to keep her home from school to do this, but I'm going to try again on Saturday. I am convinced that I will find that her levels are off, as were your son's. I don't believe the PANDA's can be cured by the kavinace, but it can definitely get rid of the symptoms while we are waiting for their immune system to repair (which can take years). I have heard other people talk about how it keeps everything under control & its almost as if they don't have PANDAS anymore. One thing I have heard, though, is that the kavinace works fine, but when you add the calmPRT, sometimes it can have some odd effects. If the Kavinace works, just go with that - maybe its a good thing you couldn't get the calmPRT. If you really want to add it later, just try the kavinace first for a while and see what happens, then if you add the calmPRT and get some odd results, you'll definitely know they don't work well together. You may remember from some of my earlier posts, I had asked about this because I had thought about the fact that the antibodies compete for receptor sites in the brain and therefore GABA, dopamine and other important neurotransmitters are not able to be utilized. A few people had answered me & one in particular had also used kavinace on her son (I believe several years ago) and it has worked out perfectly. She is the one that mentioned that when she tried the calmPRT along with the K, it made him anxious. I'll see if I can find the posts and what she said specifically. Anyway, I think we've definitely hit on something here. Pat

Of course I don't know for sure at all, but, my daughter tested positive on the rapid whenever she was not on antibiotics: I think reinfecting herself from biofilms. She never had high titers. But, i'm thinking with biofilms, the "cloaking device" hides them from the immune system so you probably won't see high titers as a result of that. I think there are very few docs who even know what to do with the titer results. Even if it comes back high...they don't even know if it indicates current infection (they'd say no in the face of a neg culture) or how long ago an infection occured. BUT....ASO and antidNase are antibodies to byproducts (or is it antigens? info overload here) of strepA. not the strep itself. So, I suppose if those products are being transported out of the biofilm you could get an immune response to them anyway. So the answer to your question is....heck, I don't know! I think you're right - you would think that there would be an immune response (especially if you're seeing behaviors) so it seems that there would be an increase in antibodies (high titers) in response to the antigen (strep). Pat

I think you said that the kavinace worked for you guys and the travacor made things worse? What's the difference between the two - I had thought that the kavinace was formulated for adults and the travacor for kids. Pat The Kavinace and the travacor are completely different formulations. It didn't matter whether the kavinace was for kids or not. I know of someone whose child was autistic and was using the Kavinace with great success for anxiety so I decided to try it out. The travacor has 5-HTP in it and I think my ds reacted to it, or it was the combination of the 2 supplements together...since he had already been on the Kavinace for about a month when we tried out the Travacor. We have also used their Endotrex spray which makes my son tic more(it a spray of theanine sublingually) but my dh loves the theanine and thinks it relaxs him. So, in other words, everybody is different. Even if they have the urine test results from Neuroscience, they can make mistakes in recommending a supplement so I think it's all trial and error. I think for Neuroscience the stuff for kids may come in powdered formulas or in smaller capsules but the formulations themselves are the same? Check out their website for more information: www.neurorelief.com Bonnie I know it contains vit B 6 and I've heard that getting too much of that can be a problem - have you heard anything like that? Also, how much kavinace were you giving and how much does your son weigh? I will probably consult with the DAN doc when the results come in from neuroscience labs before I actually give the kavinace, but I had read about it and it sounds like it should work. Did your son have any problems staying asleep before the kavinace and if so, did that change with its use? I wonder about long term use and dependence - know anything about that? I'm thinking that it might be good support while PANDAS symptoms are going strong and once they resolve, maybe it won't be necessary to take the kavinace anymore.

I am wondering if a child who has strep hiding in a biofilm (for instance, middle ear fluid) would that cause an ASO titer to be elevated? I took my daughter in today to have her throat cultured and she will have an ASO titer drawn tommorrow. They mentioned that she had a very small amount of fluid in her middle ear - not enough to worry about - she said. However, I'm wondering if even just a "small" amount would be enough to harbor strep bacteria. Her rapid strep test was negative, of course. They said they would also do a 24 hr. one. I mentioned that it usually doesn't grow out until 72 hrs, but they said they only do 24 hr ones.

I think you said that the kavinace worked for you guys and the travacor made things worse? What's the difference between the two - I had thought that the kavinace was formulated for adults and the travacor for kids. Pat

I wonder if that is residual bacteria that was resistant & not killed the first time - or... if its a new strep infection? Pat

I'm not sure I understand this - is it to mean that the abx eradicate the strep within the first 14 days, but after 30 days it comes back which accounts for the drop in the rate of eradication to 79%? Pat

Not quite sure about the time frame, but from what I've read, Gaba when taken orally does not get absorbed into the brain (it doesn't cross the blood brain barrier) therefore, its relatively useless. However, there are things out there that increase the production of GABA in the brain and that's what you have to do. Read the last post by I love dogs - I think she mentioned a product (begins with a K - you can get it from neuroscience laboratories and it has been known to do this - and according to her post she states that she cured her son's OCD with this).

all very good thoughts. I wonder if a child would have an elevated ASO titer if there is intracellular strep (that is not cultured out in the throat)? Pat

The name of the product is TravaCor, Jr. My son is on a Neuroscience product called Kavinace. It has completely removed his OCD symptoms(mostly intrusive thoughts) but he still has a lot of situtional anxiety. I put him on the Travacor, JR at one point but it made his OCD come back(he was already on the Kavinace) so I took out the Travacor and he's been fine ever since. We've been on the product for 6 months now and I'm happy for him. We are working with another naturopath, though, to fix his neurotransmitters a different way so that I can get him off the Kavinace eventually mainly b/c I just want to see how he's doing. Anxiety is our number one problem and the tics are a secondary thing to me. HTH! Bonnie Thank you for this very important information - that's just what I wanted to hear - someone who has had experience with these products. I have considered both of those, even though I have yet to have the test done on my daughter (hope to do it next week). I had thought about the fact that since GABA influences anxiety & ultimately OCD, it may be that these kids have a low level of it and that's why I thought kavinace could help. I thought about the travacor too because it seems to be more specific to kids then the kavinace, but it sounds like you're having good luck with it. What doses are you using? Did the doc tell you how much to use? I think that these products are not going to reverse PANDAS, because that takes time, but it can help to minimize some of the symptoms while they are healing from other therapies like IVIG or antibiotics, etc... Pat