pmoreno

Isn't that odd that your daughter complained about feeling funny too after the baths? I think it may have something to do with the heat - I know Gaby gets overheated real quick - she sheds her blankets almost immediately at night. About the IVIG - according to Dr. K - with the dose that he uses on his patients, it shouldn't require any more than one time. Some of the other parents who post here have had it done several times, but I'm sure the doses were lower. For some reason, its thought that using the higher doses all at once instead of breaking it down into many smaller doses seems to be more effective. I'm not really doubting that the IVIG is doing something good - I just think there are other factors involved here - like the antibiotics for one (they really wreak havoc on the immune system) and with the yeast overgrowth that's just another trigger for the autoimmune response. I don't think Dr. K finds it necessary to repeat the IVIG, unless after a year (along with the prophylactic abx) it hasn't completely gone away. (He only had 2 situations like that, I believe - where they had to repeat the IVIG more than once). Pat

Hello all, As most of you know, 8 year old dd, Gaby had IVIG 5 weeks ago and immediately had 80% reduction of PANDAS symptoms which lasted about 2 weeks. Then after 3 weeks, gradually some behaviors crept in like spaciness, inappropriate giggling or grimacing, etc. Prophylactic abx were started right after IVIG (augmentin), and I started wondering after 3 or 4 weeks whether she might be having yeast overgrowth (despite giving probiotics) After doing a LOT of reading from various sources, I decided to start doing some natural prevention (grapefruit seed extract drops morning and night mixed with some liquid - tastes horrible, by the way) giving at least 2-3 teaspoons of pure coconut oil a day in some form of food, at least a teaspoon of pure lemon juice a day, staying away from most sweet foods and using xylitol in place of sugar (which not only sweetens, but is supposed to have an antifungal action) In a sense I am putting her on a modified yeast free diet. Some of the yeast free diets out there are so severe, a child would lose way too much weight on them. Anyway, the last couple of days she has been worse than ever, talking to herself quite a bit, and at night it takes her almost 1-2 hours to fall asleep, even crying, hitting out at the air, the wall, herself, saying that something is being mean to her and she doesn't like it. She's also complaining of seeing floaters (little things floating around in her visual field). This is something that she had complained of last year when her PANDA symptoms were at their worst. The interesting thing (and I don't know if this is just coincidental or not) is that this ranting and raving about people being mean and swatting at non-existing things started right after I gave her a nice warm, detox bath with epsom salt which is supposed to be relaxing. Tonight I just gave her a warm shower, and she had the same reaction right afterwards. I'm wondering if there is something related to the warmth that bothers her? I will try tommorrow night and the next night without any baths or showers at all and see if there's a difference. In the meantime - I am so confused - her behaviors could be attributed to any number of things and I can't sort them out. Dr. K is still out of town so I can't ask him. Number one - it could be "turning of the pages" - things from the past, number two, it could be just plain PANDAS behavior that has not been eradicated by the IVIG as I had hoped, number 3 it could be yeast overgrowth from the antibiotics, number 4 it could be yeast die-off from everything I've been doing the last few days to kill the yeast. Any ideas out there? Also I have some questions about yeast - I've seen conflicting info on the internet about allowing yogurt. Does anyone have any really good probiotics they are using? I'm not quite sure which ones are best. Also I'm hoping to get a prescription from Dr. K for some nystatin - Does anyone know how they dose this for kids? Another thing, the nystatin liquid is in a rather sweet sugar base - can't that contribute to more yeast? Or is anyone on this forum giving it in a powder form? Thanks for listening, Pat

I guess one of the tricks about having a good vegetarian diet is that you eat enough combinations of the right amino acids to have complete proteins and you want to have enough vitamins and minerals (which I'm not sure you would get enough of through a traditional MVI if its the only way you're getting them) Obviously adults are more successful with this because they know what they have to do and aren't as picky eaters as kids. Some of the health food stores have good super food supplements that probably give more than what you get from regular vitamins - I'd look into those - and what about peanut butter - does she like that? If she eats that in combination with dairy - its a complete protein - also brazil nuts, pumpkin seeds and sunflower seeds are supposed to be extremely nutritional.

Wendy, you don't have to worry about the prednisone - its not that high of a dose and only for a short time (5 days) - it absolutely is not a big deal. (I'm a nurse and I am usually not real crazy about giving meds to my kids in general) but this is benign - nothing to worry about. It's really only a diagnostic tool to see if there is a change of some kind - if there is, its a better insight into whether or not the IVIG would be effective for that person. The antibiotics would work if she's recently been exposed to strep, but probably wouldn't work if she has not been exposed recently, although they would help prevent any further immune response in case she is exposed again in the near future. The IVIG helps with the damage that's already done. Then prophylactic antibiotics prevent future exacerbations. As far as hoping that symptoms go away with metals coming out, it is something that you can't accomplish overnight. I would be surprised if 6 weeks would be enough to do it. Usually if kids are that severely contaminated that it would cause immune issues, then it would probably take at least a year to pull enough metal out to make a difference. If you try to do it too fast, you can cause damage to the kidneys, liver and other organs because as the metal leaves, it has to go by these routes and too much at one time can put too much of a burden on these organs, that's why it is better to go slow. Pat

Don't know where you live, but if you don't mind traveling, or want to do this over the phone - you can contact a DAN doc who will do a PANDAS panel and find out definitively if your daughter has PANDAS - usually the panel along with a history of her behaviors and titers in combination should give an accurate picture. The panel was so informative for us - well worth it. They will prescribe tests over the phone - you just have to have blood drawn locally, then send it out to specialty labs. The initial appt. is costly (by phone they do an hour the first time because there's so much info to gather) It's roughly $300 - insurance usually doesn't cover. Then after that you can do 15 min or 1/2 hr, depending on what you need to know or discuss. I've learned so much through them and had some very valuable tests done on my daughter since we started with them last April. If you're interested, let me know and I'll send you the info on them. They're in Florida. We live in Michigan - traveled there once this summer to see them, but can get most things taken care of over the phone. Pat (By the way, eye blinking is really common for these kids - its been something my daughter did with each time she started having symptoms)

When I read about the different symptoms that these kids experience, I have to say that at one time or another Gaby has experienced all of them. The interesting thing with PANDAS is that with each episode it could be very different because the antibodies vie for the receptor sites in the brain and if they happen to hit a lot of the ones that have to do with emotion, then you get a lot more of the anger and sadness. The first time that Gaby had this (1 year ago) it was extremely scary because we didn't know what was going on - she had a horrible virus with a fever lasting a week and all symptoms of strep throat (although she tested neg on both rapid and long tests) within a week she was having trouble falling asleep and then stayijng asleep. She would wake up every night for several hours and draw in the air, mouth words to herself, talk about bad dreams and thoughts. During that time she was very paranoid about her twin sister - accused her of making her food taste bad, or making her itch. She had a lot of sensory issues at that time, like bad smells, bad tastes, itching, etc. She flew into rages about just about anything - if you were looking at her she would suddenly open her eyes wide and accuse you of being mean to her. The rages went on for a couple of months, along with blank stares, decreased attention, blinking, squinting, funny hand movements. All this lasted about 6 months, but within that time it gradually very slowly got better and disappeared end of April, then she started again in August (in between she had been diagnosed twice with strep and treated with antibiotics) However, when she started in August, it was very different from the first episode - none of the angry outbursts, none of the paranoia, none of the sensory issues, but a lot of blank stares, blinking, hand movements, decreased attention span. - mild in comparison to the first time. So I don't believe it always gets worse - it gets different, for sure, but randomly depending on the receptor sites in the brain that are hit. She apologizes a lot and is very judgemental about the actions of others, which sounds a little like what some of the other mothers here are saying - how their kids will insist on doing things a certain way in school and will criticize others for not doing them the same. Gaby had IVIG 4 1/2 weeks ago and had 80% improvement in symptoms for the first 2 weeks, but has gradually slid back down to how she was just before IVIG. She has been on proph abx (augmentin) but I don't know if its not effective for her (some people say azythromycin is better) or if its just a long slow process of the damaged neurons healing themselves. Her doc is out of town right now - am waiting to hear what he thinks when he gets back. Right now her symptoms are such that I can live with it (other than the fact that we wake up every night with her and that academically she is not up to snuff because she can't concentrate well). I am curious about how many kids on these forums have been checked for heavy metals. It seems that quite a few on here have tested high (which Gaby has) and I wonder if this doesn't influence the impaired immune system that they have. Pat

When I read about the different symptoms that these kids experience, I have to say that at one time or another Gaby has experienced all of them. The interesting thing with PANDAS is that with each episode it could be very different because the antibodies vie for the receptor sites in the brain and if they happen to hit a lot of the ones that have to do with emotion, then you get a lot more of the anger and sadness. The first time that Gaby had this (1 year ago) it was extremely scary because we didn't know what was going on - she had a horrible virus with a fever lasting a week and all symptoms of strep throat (although she tested neg on both rapid and long tests) within a week she was having trouble falling asleep and then stayijng asleep. She would wake up every night for several hours and draw in the air, mouth words to herself, talk about bad dreams and thoughts. During that time she was very paranoid about her twin sister - accused her of making her food taste bad, or making her itch. She had a lot of sensory issues at that time, like bad smells, bad tastes, itching, etc. She flew into rages about just about anything - if you were looking at her she would suddenly open her eyes wide and accuse you of being mean to her. The rages went on for a couple of months, along with blank stares, decreased attention, blinking, squinting, funny hand movements. All this lasted about 6 months, but within that time it gradually very slowly got better and disappeared end of April, then she started again in August (in between she had been diagnosed twice with strep and treated with antibiotics) However, when she started in August, it was very different from the first episode - none of the angry outbursts, none of the paranoia, none of the sensory issues, but a lot of blank stares, blinking, hand movements, decreased attention span. - mild in comparison to the first time. So I don't believe it always gets worse - it gets different, for sure, but randomly depending on the receptor sites in the brain that are hit. She apologizes a lot and is very judgemental about the actions of others, which sounds a little like what some of the other mothers here are saying - how their kids will insist on doing things a certain way in school and will criticize others for not doing them the same. Gaby had IVIG 4 1/2 weeks ago and had 80% improvement in symptoms for the first 2 weeks, but has gradually slid back down to how she was just before IVIG. She has been on proph abx (augmentin) but I don't know if its not effective for her (some people say azythromycin is better) or if its just a long slow process of the damaged neurons healing themselves. Her doc is out of town right now - am waiting to hear what he thinks when he gets back. Right now her symptoms are such that I can live with it (other than the fact that we wake up every night with her and that academically she is not up to snuff because she can't concentrate well). I am curious about how many kids on these forums have been checked for heavy metals. It seems that quite a few on here have tested high (which Gaby has) and I wonder if this doesn't influence the impaired immune system that they have. Pat

Yes, Gaby was diagnosed definitively, not only because of the behaviors, waxing & waning and titers, but also with a PANDA;s panel. Dr. K from Chicago has also confirmed that PANDAs kids do a lot of apologizing and worrying and obsessing about insignificant things and will frequently ask the same questions, needing reassurance about things - like Gaby will ask - am I bad? was that a bad thing to say? was that a bad thing to do? Is this right? I think I'm bad. I think I didn't do this right. etc. Pat

Yes, Gaby is constantly saying "I'm sorry" - her teachers have remarked on this and she does it at home constantly about everything.

I don't know if its turning back the pages or just residual stuff that has to slowly go away. When I think "turning back the pages", I think of short bursts of behavior, but she has been consistently in a foggy state for at least a week now. I mean, its not horrible, but she talks about seeing or hearing things and squints her eyes a lot - seems sleepy or not really mentally with it. I wonder if its possible that she's had new strep exposure and that augmentin isn't working, but it may just be that she's still in the process of getting over everything from before. I e-mailed Dr. K yesterday, but haven't gotten response yet - I'll let you know. Pat

Do you mean that the child's own body is able to produce it's own regulatory t cells as a result of having had the IVIG, or that they would be able to produce them eventually anyway? I wonder where the improvement eventually comes from - the regulatory t-cells or the remyelinization of the damaged neurons? I don't know if she would be like this or worse without the augmentin - I'm kind of thinking it might not be effective - on the other hand, maybe it is effective in preventing further response, but the behavior I'm seeing is still residual from what needs to be cleaned up from the last episode. It's so hard to know. Pat

It's interesting that the thymus gland is responsible for the development of antibodies e.g. t-cells (part of the immune response) and stops working at puberty. It grows quite rapidly until age 7, then more slowly until puberty at which time it starts to atrophy - I'm wondering - could there be some relation to the fact that PANDAS seems to fade away at puberty? Pat

The first 2 weeks after IVIG all was well - much more concentration - no eye blinking, etc. The 3rd week I started seeing some blinking and she complained about having bad thoughts, seeing people who were mean, her imagination bothering her. after the 4th week, its pretty much every day like this. Luckily, things are not as bad as they were with the first episode last year, where there was a lot of anger, paranoia, crying, etc. But basically she is where she was before the IVIG. She has been on augmentin prophylactically and I have read a lot of posts here that augmentin didn't work for some kids and that azythromycin is supposedly better. I wonder what her titers would show right now? Maybe the augmentin isn't working for her. I think I will notify Dr. K about this and see if he would be willing to switch her to the zith. It's just hard to tell what's going on - I'm giving her non-dairy, non-yogurt probiotics so I don't think she has yeast, but who knows. She is pretty spacey - doesn't remember much about the day if you ask her - very poor memory.

When you say after many years - exactly how many years do you mean? I can't imagine having to go through this for much longer. I did start the DMPS suppositories on her last night and today she was very wacky. squinting & closing her eyes most of the day, smiling to herself - not concentrating again - don't know what to think - if its the metals moving around because of the DMPS or because of the antibiotics she's been on for 3 weeks now - don't know if she has yeast overgrowth - although I'm giving her tons of live probiotics. Or if the PANDAS is just rearing its ugly head again, despite our intervention with the IVIG 3 weeks ago. They say that they can have symptoms for weeks and months afterwards, but I didn't expect a whole day of it to the extent that it was today. She is getting a good MVI which contains zinc - don't know if I should give her additional zinc? When you say enormous metal burden - exactly how much? and where did you have him tested? Was it mostly mercury or which metal? Pat

I just googled valtrex and apparently it is an antiviral used for herpes. The only concern I might have is that the ad warns that it is for adults with healthy immune systems. I'd have to look into that further. One thing that is interesting to me, though, is that when Gaby first became ill last November, it started out as a week-long fever, headaches, sore throat, stomach pains (negative for strep at that time) but she broke out into horrible herpes simplex lesions all over her mouth, lips, tongue, even a few down her chin - had never even had one cold sore before that. Then she started having one cold sore almost every month or every two or three months after that. Her most recent one was about 2 months ago, I believe.

There has been a lot of talk about viruses hiding in metals and I had mentioned in an earlier post that Gaby tested high for mercury content. Another parent just replied to my last post with the same thoughts and it is true that you can't truly get the kids virus free as long as there are a lot of heavy metals on board. Today I talked with the DAN doc in Florida (He specializes in autism, PANDAS, and other related autoimmune diseases). I had asked him about chelating with cilantro and this is what he told me - Apparently cilantro crosses the blood brain barrier and can go intracellular to pull mercury out, but it can be redistributed into other tissues (which is where the chlorella comes in, because it does help in binding and flushing the metals out). However, he does not recommend starting with this right away. He recommends DMPS suppositories twice weekly (120mg. for my 60 lb. child), for several months first. The reason is that the DMPS binds tightly to the metals and does not let them go once they're attached. (cilantro & chlorella binds but can lose the metals just as easily, which can be a problem - if they attach to mercury outside of the cell for instance, then go intracellular and in the process of binding with another metal, such as aluminum for example, they can then drop the mercury from the outside of the cell into the cell they entered and cause a bigger problem. So the answer is this - clean up the extracellular mercury first with the DMPS for a few months, then start small amounts of cilantro and chlorella. The benefit of using these natural chelators is that they DO go intracellular unlike the DMPS, so this DAN doctor actually likes to use the combination like this to get to both problems (intra and extracellular). Above all, the idea is always to go slow - so as not to pull out other important elements. One that seems to be pulled out most frequently and needs to be replaced is zinc. Because of this, its important to have regular blood counts done to make sure everything stays in balance. He recommends chelating slowly over about a year.

Thanks for the info. By the way, what exactly is Valtrex? I am going to post a new thread on chelation right now - so you may want to read it to see what I have found out today. You're so right about viruses hiding in metal. How did this father know that the boy was dumping metals on his own? You say you are continuing with IVIG - how many times have you done it? I was under the impression that you only had to do it one time, then go on prophylactic antibiotics. Our daughter had 1 1/2 gm per kg of body weight (she weighs 60 lbs, so she had 40 gms total over 2 days). How much has your child had and how often? I understood that if you give this dose that she received, its pretty successful and you don't have to repeat again. It's so expensive, I can't imagine doing this repetitively. Which doctor are you working with and what area do you live in? We have worked with Dr. K in Chicago since we live in Michigan. About the Cilantro - I would buy it at a health food store - I assumed since it was organic, it would not have metals in it - maybe I'm wrong. But anyway, read what I'm about to post and then tell me what you think.

What kind of program is she on? and what tests did they do? When I have time, I will tell you what I found out from the DAN doctor today - its' pretty amazing information re: mercury removal. Pat

It sounds almost too good to be true. I may try it myself to see. But I didn't read anything in there about putting the oil on the scalp. Do you know of any sites that discuss that specifically? Can you ask your doctor where she got the idea to do that and what evidence (hopefully medical) supports that? Thanks a lot, and don't forget to ask about cold pressed vs. refined oil.

A question re: the oil pulling. I googled it and it appears that its generally swished in the mouth and can be done every day without a problem. I did not find anything about putting it on the scalp - did you? Also it appears that they generally prefer to use cold pressed, but will use refined as a second choice - can you check with your doctor about that? Does she prefer the cold pressed too or will either one work equaly well? Another question - what site did you order yours from? I looked on line and there are a lot of them, but some will say cold pressed unrefined, some just refined - I haven't found one yet that says cold-pressed refined.

A person with a normal immune system is better equipped to rid themselves of metal, but that's probably small to medium amounts. When you're talking about the large amount that some of these kids have (Gaby, in particular), even a healthy immune system couldn't accomplish that quickly enough. That's why people who have had extreme exposure to metals or other toxins (who do have a normal immune system) will generally have to have chelation. The longer the metal stays in the system, the more irreversible damage it does - that's why when they chelate kids who are a little bit older (over 10), they pull the metal off, and there is some progress made, but not a complete turn-around even if they get all the metal out (because of the irreversible damage to the developing cells over time). I have a friend (co-worker) at the hospital whose son is now 12. He was first chelated at 11 and over a period of a year, they pulled off a lot of metal. He made amazing strides (He has autism - not pandas), was able to verbalize multiple sentences for the first time and actually do math and understand it, started expressing emotion. As well as he is doing now (and most of the metal is gone), he still is not a completely typical functioning child because at some point some of the brain cells were damaged and they don't anticipate that they will all be repaired.

Thanks for your helpful post. Yes, I also heard that apple pectin is a good, gentle chelator. Never heard of the sunflower oil, but am very interested to see what happens with your child. I understand you do the hair and scalp treatment only once, but what about the feet? Can you do that at the same time as the scalp or should you wait a few days and can you repeat that or not? Pat