pmoreno

When I read all your posts my heart just goes out to you. What a struggle and how frightening. My dd had strep three times since she first started her PANDAS journey 1 1/2 years ago, but I've found since then that she's not a true PANDAS because her flares don't usually come with the strep, but rather with viruses, particularly herpes simplex1. So she's really more PITANDS. However, I wanted to offer some words of encouragement. Since I have started her (and all my other kids) on daily zinc and give her 5,000 mg. of viramin C powder (1tsp. mixed in oj) at the first sign of a sniffle or cough, I have not any strep infections yet this season. (none since last June). As a matter of fact, no cold or flu has lasted more than 24 hours of mild symptoms. She was on antibiotics for about 4 months after IVIG (from Oct. - Jan), which did cause some yeast issues. Since I started s.boulardii and goat milk kefir, her yeasty behaviors have gone away and it is well documented that kefir is really helpful in immune support, so that might be something for all to try whether on proph antibiotics or not.I've read that it works wonders in restoring the body to a proper balance and protecting it against many forms of disease. Pat

Pat, so glad you have seen such great improvement with Kefir! I think I will check it out too. My 7 yr old had horrble itching as you describe and her's was much improved by going gluten free. Your post caught my eye though because of the symptoms you describe... "but she eventually started having behavioral problems again and a lot of itching, rages, inappropriate laughing, seeing dots, spots and so on." I'm interested in hearing more of your daughter's symptoms since they sound so similar to my dd who I am working on getting tested for pandas. She is highly emotional right now with inappropriate laughing too and she says she sees dots, snowflakes and flashes of light. This is new for us. Susan Susan, while you're in the process of getting her tested, see if you can get a microbial oat test done by Great Plains Laboratories (you need a doctor's precription). the micro will probably give you enough information to know whether there's an overgrowth of yeast or clostridia (or other organisms). I think it costs roughly $140 maybe (you can check the price list on the web site). There is another test that is much more comprehensive and costs about twice that much. I had that one done on my dd initially, but then do repeat micro tests every now and then to see how things are going. If there is some type of dysbiosis going on, then you might want to start by clearing that up (with the goat milk kefir for instance) before you move on to other things - who knows - it might be all you need to do. Let's hope.

Caryn: Glad to hear that you've had similar success. I forgot to mention the other supplements that she's on because it is fair to give credit to them, although I may wean her off of them after she's had the kefir for about 6 months because I believe that by then, that's all she will need (from what I've read). Particularly if you use a really good kefir with potent strains of bacteria. So far I have found that there are none better than the (ugh!) coconut water kefir or the goat milk kefir. The goat milk kefir does come in a very tasty blueberry/pomegranate flavor from Whole Foods. Just curious - what kind of kefir are you using? The supplements are: vitamin B complex, extra vitamin B6, vitamin E (200), zinc, cal/mag/butyrate (the best combination comes from New Beginnings Nutritionals and I was giving this mainly to heal her gut. I believe that after all the yeast issues - unavoidable due to the antibiotics - we ended up with leaky gut syndrome and with that comes all the food allergies that they never had before., fish oil, the s.boulardii at bedtime, methionine on an empty stomach in the morning and at night (her levels were pretty low - which is not surprising for someone with a dysfunctional immune system). Also she takes vit B12 shots (just under the skin - feels like a mosquito bite and she doesn't mind) along with methyl-folinic acid (not plain folic acid because this doesn't allow for proper absorption of the vitB12) This combination is done for poor methylation which is also typical of kids with a dysregulated immune system. I will onlyneed do tha injections for 6 mos. I have to say that like your child, my children did not get very sick either this year - I believe it may be because at the onset of any sniffle or stomach pains, headache, I gave them a teaspoon of vitamin C powder (equivalent to 5,000 mg) mixed in a small amount of orange juice (and then chased with more of plain oj because the C is very bitter). By the following day they would always be symptom free. I've done the same for myself and I haven't had one cold or flu this year (unusual for me). I took Gaby off the antibiotics back in January and I worried a little because of all the odd symptoms, but now this confirms what I suspected - the PANDAS was pretty much resolved by the IVIG and the other symptoms I saw were associated with the gut dysbiosis. (which has taken a long time to resolve - you're so right when you say they get worse before better). I just can't believe what a positive change I've seen in her and all that after a nightmare of rages and itching. Oh, as far as diet goes - this is not always easy - especially when they have siblings who indulge or go to events, but I have compromised on that. I do no added sugar, use agave syrup (better than honey) to sweeten anything, avoid all dairy except goat milk kefir, don't use much gluten (maybe a little - I let her have a whole grain bread - like 12 grain sometimes) and that's about it. I know that some kids whose guts have been more seriously affected by the leaky gut syndrome need to be a little stricter on the diet, but I believe that after you do a couple of months of cal/mag/butyrate, you can patch up the holes and then with the kefir to prevent new holes from forming, it may not be necessary to be that strict with the diet (just my thought). Hope more of you can benefit from the kefir. Pat

As many of you may already know, 70% of the immune system is housed in the GUT. If there is any problem with digestion, it throws off how the body responds to viruses, yeast overgrowth, etc. I believe that my daughter's PANDAS was helped tremendously by IVIG back in October, but she eventually started having behavioral problems again and a lot of itching, rages, inappropriate laughing, seeing dots, spots and so on. It was NOT the same behavior that we saw before she had the IVIG. She was on antibiotics for about 4 months (first augmentin, then zithro). I think this really threw things off in her GUT. We tried a few things like diflucan, flagyl and nystatin, but the itching continued and the rages. Apparently if you kill the yeast, you get an overgrowth of clostridia, so these things take turns causing problems and then when you treat them, they get a die-off reaction which can look almost the same as when they're having yeast or clostridia. I did see some small improvement over time with using S. bulardii twice daily and in addition a green powder called essential greens by mother necessity (contain multiple probiotics, enzymes, chlorella and concentrated greens). But what really did the trick is when I started giving kefir. Forget yogurt - the bacteria only stays in the GUT for a few days and then its gone unless you eat more yogurt. Kefir actually populates the GUT with good bacteria that will stay there (you have to take it for a while - a few weeks at least - but why stop, it's really healthy) I started out giving young coconut kefir (google it to see how to make it). It tastes awful, but you can mix it with any other juice to kill the flavor. Start with 2 tablespoons and work up to 1/4 cup twice daily according to the recommendations - we haven't even gotten up to that much and have seen wonderful results. In addition I started her on goat milk kefir. Anybody with sensitivity to milk products need not worry - the goat milk kefir breaks down the lactose & the proteins. So by giving her both, I'm sure she's getting a much broader exposure to various good bacteria. Anyway, I have to say that after MONTHS of itching (it went from anal itching to vaginal itching to inner ear itching to eye itching) that she has not complained of ANY itching in several days, and simultaneously has had no rages, pleasant mood, able to sit and do her school work and only made 2 or 3 comments that could be considered OCD-like, but she snapped out of it fairly quickly. From what I've read about kefir, it contains bacteria and enzymes which help with digestion and with immune support and is many more times effective than probiotics that you buy in capsule form. So, anyone whose children are having problems with yeast issues or viral issues, give this a try. Pat

Ahhh yes - school frustrations - so familiar to me now. I remember reading someone's post months ago - maybe it was Amy S of daughter in school under desk - wouldn't come out and acting aggressively to teachers. I used to sympathize and say a silent prayer of thanks that it hadn't gotten to that with my daughter. Well for the last 2 months it has. She is hiding in corners, under desks, in the girls bathroom, running out of the building, climbing on tables or file cabinets, yelling at, hitting and kicking teachers. She can have a pretty good day and then without provocation, frown and sullenly complain that someone is being mean to her or that she is really mad. This escalates until they usually call me and tell me to pick her up. She can no longer be in a regular classroom because the episodes are too frequent now and she gets loud and physically aggressive. (This from a girl who was always sweet, polite and very shy). They have made her OHI. Unfortunately there is no place for her in the school district. None of the special classrooms really meet her needs. So for now she stays in a little room with an aid until the end of the school year. As for next year they want to bus her out of the district to a county school which would mean almost an hour bus ride there and back. If it comes to that I'll have to home school. Don't know a thing about that - although I imagine it will be a lot of work and I pray I have the patience. If you are reading this, Amy S - I am very happy for you that IVIG worked so well for your daughter and that she is symptom free since November. We weren't quite as lucky. Even though our Oct. IVIG did get rid of the tics completely, the odd behaviors have come and gone with some going away and new ones appearing. Still using a lot of nutritional support - hope that it just fizzles out after a while. I know that some of the other IVIG successes took at least a year or 2 to completely recover.

Cheri, thanks for all the good advice. I didn't realize that your son was that old already. That's a little disheartening to think that he has taken these supps for quite a while and he's never gotten to the point where he can go off them and feel OK. I guess I keep thinking that eventually all of these kids will outgrow this stuff they're going through. I especially thought that the methionine would soon improve the immune system so that these issues would fade away. Pat

Sorry, I haven't had a chance to get on line lately, but the oregano has a very strong flavor. You only need to give about 3 drops 2 times a day and you can hide it in some kind of strong juice (like carrot juice maybe), but I usually give it in a small amount of it, then chase it with a big glass of something that tastes good. You can google it, but it definitely works as all three (antifungal, antibacterial and antiviral). I don't think you'd need to give it for long - I only gave it for 5 days. Then make sure you give a lot of broadspectrum probiotics to fill in the space of whatever pathogens died. I am starting to make my own young coconut kefir - google that and see what the health benefits are. You start out with just a tablespoon in the morning, then go up to about 1/4 cup in AM & PM. It doesn't taste too great, but you can hide it in smoothies. Pat

Hi Peggy I got your email via latitudes, but it had no return email address so am replying here My son does not have a PANDAS dx but has TS with OCD we did try Luvox and other meds to help but things only got worse. he uses high dose inositol/P-5-P/methylB12 and methionine now and does not have any gas problems with it. some years back, after he was weaned off the meds, adding 50mg 5HTP each evening was the only thing that helped control the OCD that was consuming his life. some people do get edgy on it tho so start low The Natrol brand comes in a tiny capsule so may be easier for your child to swallow. Some people prefer tryptophan to 5HTP and I think that comes in a powder hope that helps Cheri, Did the methionine supplements bring his methionine level up? (that is, have you checked a level?) We had Gaby's level drawn at UM recently and it was pretty low so we have started giving her methionine a few days ago. Also, with the supps you mentioned, does that keep his OCD completely under control? thanks, Pat

Jena - how is he doing now? I just wanted to say that I have found something that has made a world of difference in my daughter. It's as simple as giving her just 3 or 4 drops of oregano oil (dissolved in juice) morning and night. It's more effective if they could tolerate it under the tongue, but that's asking a lot of little ones. You would probably want to continue it for several months to really see a lot of benefits, but I have already seen some in a short time - it is a very potent anti-bacterial (as much as some antibiotics but without causing resistant strains of bacteria to form), it is also a strong anti-viral and anti-fungal, so if the behaviors are coming from something else (like an overgrowth of pathogenic organisms in the GUT), this will take care of it. Even if he doesn't have any of those issues, it boosts the immune system and there are no side effects - so what do you have to lose? Try it and let me know. Pat

Thank you so much for that link! I have been talking about this to listmates for about 3 months, but didn't know how to get started. I sent in some information about us and maybe with enough of us doing this, they will realize that there are a lot of us out there and we deserve to be heard. Pat

The reason they don't pay is because of the off-label use. It hasn't been proven in research trials and approved as a treatment as yet.

Hi Linda. Thanks. Dr. K consulted, but didn't do the IVIG. The first round was 25 grams two days in a row for a total of 50 grams. My son is 55 lbs. So, it was a little higher than Dr. K would have done. The second and third rounds were just 25 grams each. We saw huge gains with the first round, some with the second, and the third round was just 10 days ago and now this has happened. As far as I know, we aren't fighting any bugs in the house and our son doesn't have any sign of illness. I am also very sorry to hear the bad news. It makes me wonder if IVIG is not really more than a quick bandaid. It seems to help right away and dilutes some of the wild antibodies, but then (depending on exposure to viruses, bacteria, etc, things can flare right up again) It seems like they need continuous immune regulation. This is why I'm trying with the LDN - they have to continue it to receive the benefits of immune regulation, but it's easier on the system (and the pocket book) than IVIG on a long-term basis.

You just go to Yahoo groups, then type in LDN autism and it will come up, but you have to join the group in order to post questions. As far as it affecting sleep. Well, sleep is already an issue for us too, so I figured it couldn't get much worse. Anyway, I have heard that it can be difficult with sleep for the first week, but usually never lasts beyond 10 days. So far the first night I applied 1 1/2 mg - didn't have any problems with sleep.The second night no problem sleeping, but last night (3rd night) she woke up around 3 AM and was crying that she couldn't sleep - lasted about an hour, then back to sleep. I did use a little more last night - probably 2 1/2 mg. As I had said the DAN wanted me to start right away with 3 mg. but maybe 2 1/2 was too much for her even - it seemed that the 1 1/2 didn't seem to bother her as much., but then again, you wonder if it wasn't working as well either. She was fairly irritable again today (just on and off and especially more in the evening when she got tired). Still not sure whether to attribute that to the start of LDN or not. Well, I'll continue on with this and see what happens - I will back off again to 1 1/2 mg. and if the irritability continues beyond a week, I may quit, wait a while and start again and see if the irritability returns. I have heard from other parents using this that they have seen some improvement in language and cognition within the first week, but that the actual immune improvements don't happen until they've been on it for about 3 or 4 months.

Funny that you should post on this now. I have just started Gaby on it last night (again). I had originally started her on it months ago for just a few days, but I had simultaneously started her on a couple of other supplements and I was having some issues at that time, so decided to back off on a few things and add in one new thing at a time. Now I am at the point where I feel I can start the LDN and be clear on whatever changes happen, I can attribute it to that. In the meantime, while I was waiting to start her on this, I have continuied to check the LDN/autism group posts on yahoo groups because this site gives great information from many, many parents worldwide who have been or are just starting to use this - in most cases for immune regulation for their autistic children, but it has actually been proven to be effective for improving any immune dysregulation (including MS, PANDAS kids, people with chronic herpes simplex infections, etc). It is without side effects, and I have been checking now for many months to make sure that there isn't someone who reports something that can definitely be attributed to it negatively. Some people have used it for several years and the immune system has repaired itself so that when they go off of it, everything still works fine. Some who have been on it for less time and go off, will see some immune issues creeping back in. The way that it works is that in the low dose form of this drug it temporarily blocks the opiate receptor sites in the brain (so you apply it in cream form to the body after they fall asleep) then by 2AM when the body naturally starts producing beta-endorphins. That temporary blockage will trigger the body to produce more (maybe twice or three times as much as it would have because it has been tricked into thinking that there isn't enough). This increase in endorphins actually boosts the immune system and causes some immune modulation to take place. The recommended dose is between 1 1/2 mg and 3mg. I am choosing to do the low end - 1 1/2 mg. As I said it does come in a cream - you can't refrigerate it because it will separate out. It is made by a compounding pharmacy (I use Coastal Compounding - they're fairly reliable with all their shipments - have used them for B12 injections, etc). It has to be ordered by a physician, of course. I use my DAN doc in Florida, but there are alternative MD's all over who would probably prescribe - you just have to look for them - in most cases they don't take traditional insurance and you end up having to pay. But you only pay a large amount for the doctors visit - the medication is relatively cheap - maybe $20 a month or so. Pat

I feel for you and I know just what you are going through. I had recently posted that my daughter, Gaby, was doing better (and she was for a short time). Then she got another herpes lesion on her lip. I gave her valtrex for a week (first time ever for this med) and I don't know if it was from this med or just the virus itself, but she has become extremely irritable & aggressive & sounds exactly like your daughter in this post - she, too, has been hitting the teachers, running out of the school, yelling at everyone, took her shoes & socks off on the bus (they won't let her ride it right now - I have to drive her). Even though some people at school are understanding, I know that people just look at us and think that we should do something to control her.It's an up and down thing - good for a week or two to get your hopes up - then back down.

As many of you know from my previous posts, Gaby has about every other month herpes simplex lesions on her lips (These started 1 1/2 years ago along with the start of the PANDAS symptoms). I usually just put something on topically and it's gone within a few days or a week. This time I had gotten a prescription for valtrex 500 mg. 3 x daily for 7 days. I gave it to her as soon as she complained of her lip itching. (I also used the topical stuff) It's been about a week & its gone away no sooner than when I was just using the topical, but I found that this week she has been really irritable and actually incontinent of urine 3 times in the last few days. This has never, ever happened to her before. Has anyone heard of valtrex doing this? I know that some parents of autistic children have used it to recover their children. I thought maybe it could have some benefit for PANDAS too, but now I wonder.

If your child is proven to get strep frequently, then you're kind of stuck with having to be on long-term abx. My daughter has had several positive strep cultures over this past 1 1/2 years since she started this, but it seems like her episodes are usually associated more with viruses. All kids are different in what antigen they react to. Therefore, after the IVIG in Oct, we did stay on abx for almost 4 months (first augmentin, then zith), she had a lot of yeast issues so I stopped the abx about 2 months ago and so far so good (as far as not getting strep anyway) but she still has yeast and that brings on behaviors in itself. They almost all have some kind of gut issues (and of course 70% of the immune sytem is in the gut) so there are so many factors to consider. Pat

You say he had strep, but no symptoms - did he test positive for strep? and the impetigo like sore - are you sure it isn't herpes simplex 1? That's how my daughter started down the PANDAS road 1 1/2 years ago. and now she has an outbreak of 1 or 2 lesions on her lip in pretty much the same place every other month or so. If it is that - the abx won't do anything for it. Right now she has 2 lesions that started a few days ago. I usually use an over-the counter very expensive topical med (comes in a little vial for about $18) but it lasts for a while. I put it on as soon as she says her lip is itching. I put it on 2 or 3 times a day (sometimes more the first day and will do that for a couple days) then it usually goes away pretty well (if I didn't do that it would get much larger, crusty and stay for a week or more). This time I added valtrex by mouth and I don't know if it's related, but she has been really irritable since I started it. Besides that, it doesn't seem to be making the sore go away any faster than if I were just using the topical. The only reason I decided to try it is because I've heard that there are a number of people who have recovered their kids from autism with it and I was curious to see what effect it would have on her behavior. I imagine that the way it must work is that if used long term it should keep the viruses away and prevent an outbreak in the first place. It does contribute to yeast though and I believe she already has a problem with that since she's been complaining of an itchy bottom for almost a month now. Anyway, did you ask your son if the lesion on his lip is itchy? Does it look like it could be a herpes lesion? Pat

The steroid burst is nothing more than 5 days of prednisone to see if the child will respond well to that - it's supposed to decrease brain inflammation. It's nothing more than a test. It only works for as long as they take it - then it goes back to how it was before. Long term steroids are not good so it is not a matter of trying to see if steroids will work as a treatment, it is only to see if there is inflammation that can be decreased temporarily and get good results. If that's the case, then usually they will respond well to IVIG (which is probably what your son had when you say gammaglobulins). Did he have it as an IV over several hours? My daughter had it in October. The tics went away and never came back. But she did have trouble with OCD and that did come back. I think IVIG works for a while, but you need to repeat it in most cases. Pat

As most of you know, Gaby had her IVIG with Dr. K back in October. Tics were gone immediately and other behaviors improved dramatically for a few weeks. Then OCD & other bheaviors gradually crept back in and we have been dealing with ups and downs ever since. December & January were our worst months (just as they were the year before). I have to say that I'm beginning to see a light at the end of the tunnel. I'm not sure yet whether it is due to the supplements I've had her on recently or whether it would have spontaneously improved anyway - but this is what we've been doing: Her sleeplessness has always been a real issue so we had tried 5HTP (initially we did 3 days and she complained of dry mouth at night and it didn't seem to help her sleep - so we stopped) We started back on it and this time she has been sleeping like a baby. Complained of dry mouth maybe the first 2 days but not after that. Her mental clarity has improved too - she is more alert & memory is better - could be from the acetyl L-carnitine we started her on. It's important that it is ACETYL (L-carnetine) and not just plain L-carnetine because they work differently and the acetyl (L-carnetine) specifically works on memory (its been used with dementia). We took her off antibiotics the beginning of Feb. It seems that her flares are more related to viruses than strep so I wasn't too worried. So far so good. One thing that has helped us with the viruses - Everyime anyone in our house even starts to sniffle I give them a heaping teaspoon of vitamin C powder (its about 5,000 mg) - forget pills - they don't work. Anyway - since we started doing that - no one has had an actual cold within the last couple of months.

She still c/o itching on & off although not as bad as before - I haven't had any previous experience with strep in that area - does it eventually go away even if untreated? Are the effects like having it in the throat? (I mean if untreated can it cause rheumatic fever? I may have to take her back in. I know they think i'm nuts anyway.

several weeks ago I thought Gaby had worms because of the constant itching (especially at night). The area around her anus was slightly red -irritated looking- but not enough for the doctor to think it was strep. They tried her on the vermox but it didn't change anything. I even checked for the worms (with the tape test and also with a flashlight at night) I didn't see anything that looked like worms, but who knows. After the worst of that it slowed down, but she frequently will complain of the itching again on and off, but not with the intensity as she did at that time. I still think it might be yeast. I gave her lemon water quite a bit for a while and also 2-3 drops of grafefruit seed extract in her fishoil. As I say, its better but not all the way gone. The doctor also thought it might be a small internal hemorrhoid. The usually has one or two stools a day and he thought that this could irritate it. He recommended a little dab of 1% hydrocortisone for a while to see if it would clear up. I tried it a couple of days, but you know you can't use that stuff long term because it thins the skin. Pat

My daughter's tics are the one thing that did clear up with IVIG and she hasn't had them return (as yet) - I don't know what would happen with a brand new episode. Her ability to do school work has improved slightly - a little more able to concentrate for longer periods, but not what it should be. Her OCD remains with frequent questions that are irrelevant, but they're not as bad as a few months ago. Sleep is still a big issue, as well as emotional lability and separation anxiety. Things are manageable the way they are now and hope that they will improve. She does have an aid at school and for next year they are planning to have her in a special ed classroom. I'm resigning myself to that we're going to be stuck with this for a while at least at some level. As far as what specifically is improved with IVIG, I think varies with the kids. It probably depends on the receptor sites affected and which antibodies the IVIG will replace. Pat

Well, this just supports what's been going on with my daughter - sometimes a positive strep culture with flares and sometimes nothing more than a cold or virus that will set things off. So not all PANDAS children are limited to just being triggered by strep - it's the other stuff that's harder to deal with because the antibiotics don't work on them. Pat