pmoreno

Yes, DAN doctors are expensive, but for the most part they have some good advice to offer - At the same time, they probably get used to prescribing for a large population of kids with similar symptoms and sometimes I think they get a little carried away with all the yeast removers, enzymes, etc. So you have to think for yourself - what seems to be the biggest problem for your child. In our case, I think its the mercury that has altered her immune system. It's true that most mainstream docs don't approve because a lot of this is experimental - there's not enough evidence, not everything works for every child, not enough scientific proof, some of it can be harmful, especially if done in a hurry. Dr. K has worked with autism for quite some time and is supportive of parents using alternative methods as long as they are safe. He is fairly conservative on most issues, including chelation. I don't believe he fully supports it. (But again, I think its because some of it can be harmful if done too fast or with some really potent chemicals) You asked about Gaby's current emotional behaviors - generally very even, pleasant, smiling, relaxed, calm. Sometimes in late afternoon, evening, as she gets tired, she might say a few things that would show her worrying about something, but not overly so like before. Hi, I don't think the IVIG will take care of the mercury - its not a chelator. I'm still convinced that I may have to do something with the cilantro/chlorella combo (I've actually started yesterday). If the doctor tells me on Thursday that I shouldn't do it, then I will stop, but otherwise, I feel that I have to be proactive about this. I've heard that the earlier that you get it out - the more you can reverse - because as kids get older, the damage is harder to repair. I am also adding some foods that are thought to be especially supportive. I don't believe in using a lot of pills or supplements because that can be overwhelming for a child, but some that Dr. K recommends for immune support are vitamin E (I use 200 mg daily on her), vitamin C, and folic acid and most definitely good quality fish oil. (I've heard flax seed oil is good too, but the fish oil is superior) I have found that selenium is very helpful and is found in huge quantities in Brazil nuts (as well as magnesium). I cut them up small and sprinkle in her oatmeal every morning. All antioxidants are extremely helpful so I give her the most potent ones (Pom wonderful which is the best pomengranate juice), organic carrot juice, and raw vegetables like broccoli or spinach ( bought at whole foods - organic without pesticides). She is currently getting vitamin B12 injections per the doctor in Florida because it actually does something to stimulate glutathione production in the body (important for mercury removal). they're very tiny needles, but you can get it as patches too (doesn't get absorbed well by mouth). Another food product that is very safe and supposedly aids in helping the body rid itself of mercury is apple pectin. I may look into that later after I finish with the cilantro/chlorella, but I just don't want to get too many things into the mix. about the tics - no, she really hasn't had any since that first day, although in my post today, I did mention that she squinted or closed her eyes on Sunday in reaction to some "ugly" thoughts. Pat

Hi, I don't think the IVIG will take care of the mercury - its not a chelator. I'm still convinced that I may have to do something with the cilantro/chlorella combo (I've actually started yesterday). If the doctor tells me on Thursday that I shouldn't do it, then I will stop, but otherwise, I feel that I have to be proactive about this. I've heard that the earlier that you get it out - the more you can reverse - because as kids get older, the damage is harder to repair. I am also adding some foods that are thought to be especially supportive. I don't believe in using a lot of pills or supplements because that can be overwhelming for a child, but some that Dr. K recommends for immune support are vitamin E (I use 200 mg daily on her), vitamin C, and folic acid and most definitely good quality fish oil. (I've heard flax seed oil is good too, but the fish oil is superior) I have found that selenium is very helpful and is found in huge quantities in Brazil nuts (as well as magnesium). I cut them up small and sprinkle in her oatmeal every morning. All antioxidants are extremely helpful so I give her the most potent ones (Pom wonderful which is the best pomengranate juice), organic carrot juice, and raw vegetables like broccoli or spinach ( bought at whole foods - organic without pesticides). She is currently getting vitamin B12 injections per the doctor in Florida because it actually does something to stimulate glutathione production in the body (important for mercury removal). they're very tiny needles, but you can get it as patches too (doesn't get absorbed well by mouth). Another food product that is very safe and supposedly aids in helping the body rid itself of mercury is apple pectin. I may look into that later after I finish with the cilantro/chlorella, but I just don't want to get too many things into the mix. about the tics - no, she really hasn't had any since that first day, although in my post today, I did mention that she squinted or closed her eyes on Sunday in reaction to some "ugly" thoughts. Pat

Hello all, and hope you see this, Linda, since you were asking me about Gaby's progress Last Saturday was 2nd week after IVIG. Overall things are still good - very consistent, pleasant mood, still concentrating well in school. However, still not sleeping well at night (wakes at 2 or 3 for about an hour) one bad episode on Sunday after a birthday party which was rather stressful & eating cake (which gave her an awful stomach ache - she doesn't tolerate sweets real well). Thereafter, she closed her eyes a few times and said she was having some ugly thoughts. This was worrisome, of course, since she has been pretty much symptom free except for the continuing insomnia - however, if you look at the whole picture, it is not that big of a deal. I have talked to Diana (whose son had IVIG the week before Gaby) and she reminded me that although most kids are 80% better initially, they usually aren't 100% until about 6 weeks later and even then might experience some kind of blip here and there for the first year. All the mothers she's talked to that have been through this for a couple of years have not had relapses after that first year. I noticed a few posts on this forum about mercury and other heavy metal body burden. Interestingly, the last few days I have been giving more thought to why Gaby is prone to PANDAS in the first place whereas the rest of our large family isn't. Her immune system is certainly compromised and something has caused that. Last year when her symptoms first appeared (before I knew it was PANDAS) I wondered about mercury exposure from vaccines so I had a urine porphyrin test done and sent to a lab in France (one of the only places that will do this - although there may be one or 2 in this country) She tested abnormally high for Mercury. Just to reassure myself that this was not a farce, I had several other of my children tested - her twin tested high, but not as high as hers (both girls have a speech & language delay, but Gaby's is more problematic than her twin's (Stefi)), my 15 year old tested moderate, my oldest daughter (29) tested minimal, my step daughter who was not vaccinated in this country, tested completely negative. I'm not surprised that the older kids tested less than the younger ones because over the years, the number of required vaccines has risen tremendously and with each vaccination it brings more mercury in the system (because it is cumulative). Even if it isn't from the vaccines, the bottom line is that she has a high level, period. Some kids are less able to rid their bodies of heavy metals than others. They might have low glutathione levels, for example. And it isn't as easy as just taking some glutathione to change that - it doesn't work like that. You have to do things to allow your body to produce more glutathione on its own - there are supplements for that. In any case, when you have a high heavy metal body burden, it affects the way the immune system functions. Could be why Gaby is prone to PANDAS. Right now, I'm hoping that with the IVIG and Abx, she will get over that. At the same time, I would like to help get rid of some of the mercury if I could, since it doesn't go away by itself and might cause more problems with - who knows what - later. I have been doing a lot of reading about natural chelators like a combination of cilantro and dried chlorella. The cilantro is very potent in moving mercury and it crosses the blood brain barrier, but it doesn't always flush it out - sometimes it gets redistributed in other tissues. The chlorella apparently bonds with it and allows it to come out in the stool and urine. For adults they recommend using a teaspoon of each once or twice a day with a lot of fluid and continue about 3 weeks. With small children, manufacturers recommend using 1/3 the adult dose. Therefore 1/3 teaspoon each and maybe only once a day for 2 weeks. Even with the traditional chelators that the DAN doctors use (IV and suppositories), you don't want to move too much mercury at once because its hard on the kidneys, trying to flush all that metal out at one time. I will be talking to the doctor in Florida that originally diagnosed Gaby with PANDAS this coming Thursday. They specialize in autism and all immunological issues. I want to get his thoughts on this idea about the natural chelation. I have seen some sites on autism and mercury chelation and there were a few adults who tried this and had bad side effects (but they used a whole bunch of cilantro at once - instead of a teaspoon) - Even though its natural, you can't overdo things like that - people always think that if a little of something is good, then a lot has to be better - not so with this stuff. As a matter of fact, the slower you go, the safer it is and it should bring about some favorable results from everything I've read about it. chelation seems to help some autistic kids (if the autism is directly as a result of heavy metals) I think part of the problem with treating autism is that there are other causes too, and its hard to identify sometimes what the cause is. What's interesting is that there are a lot of common denominators here - autism, PANDAS, immune system dysfunction, high mercury levels, vaccines. I think that even if they find that the high mercury doesn't come from the vaccines, there is still something about the vaccines that cause children to have problems with their immune system - and when you think about, you don't have to be a brain surgeon to realize that when you are putting tons of viruses into your child - it would be impossible not to strongly affect their immune system - many times in a negative way. I will write more after I talk to this DAN doctor on Thursday. Also, Gaby's low tolerance to sweets has always made me wonder about leaky gut syndrome which is very common in autism and other kids with immune issues (since most of our immune system is housed in the gut). I will ask him to let us do a test for this (I think it involves giving two types of sugar in one day, then collecting - not sure if its urine or stool - after that to see the amount that is expelled). Pat

I have been on this website mainly for the PANDAS issue with one of my twins, but when I saw your post, I had to respond to this. My twins (who are 8 now) had developed fairly normally as infants, but at the age of 20 months it was apparent that their speech and language was delayed. They still receive speech therapy and it still is not what it should be. I've always thought that the vaccinations had something to do with it. Now, one of the twins (the one who is affected the most speech-wise) had developed PANDAS last year. I'm not sure if there's any correlation - having to do with the immune system. She is doing fairly well after receiving IVIG a couple of weeks ago, but as far the vaccinations go, I am becoming more skeptical all the time. My sister just called me a couple of hours ago to say that her 16 year old daughter who had received a chicken pox booster shot yesterday has a huge swollen arm - hard as a rock, red, hot to the touch and burns and itches. I told her to get her to the ER. What's going on with all these vaccines - it seems like nothing good ever comes from them - we used to be just fine without all these new additions.

Hello all, It has been 1 week and a day since Gaby had her IVIG and I have been seeing general improvements right along. Yesterday and today she was extremely social and interactive with other kids (a first in a long time). I still hear an occasional odd comment or unusual worry maybe once or twice a day, but her concentration is sooooo much better and so is her mood. No more angry outbursts at this point - still no re-occurence of any tics. I'm almost afraid to relax and enjoy this - afraid it will all disappear. That is my greatest fear - that all this wonderful change will be short-lived and that sometime in the future we'll be dealing with this again. I'm such a skeptic. Anyway - so far so good. Linda, if you read this, if you're thinking of going to Florida instead of Chicago - you would be very happy if you went to Creation's Own in Melbourne and saw Scott Smith the P.A. for Dr. Bradstreet - they're wonderful there and would do IVIG if you want. Also, they're extremely informative about PANDAS, are very up-to-date on diagnostic tools and don't believe in covering symptoms with a lot of psychotrophic meds. Pat

Linda when your son had the dental cleaning, did they use fluoride? My son reacted strongly to it with increased tics. His teeth have always been a major tic trigger...when younger we always knew when one was coming out or in as he would have increased tics, OCD, tummy trouble etc What in the fluoride is it that makes them tic more? Has your dentist also mentioned a possible link to Celiac disease? This is also an autoimmune disease. Linda Linda, It's been a week now since IVIG and Gaby has not had one single tic since the day of the last infusion. You've probably seen my recent post about worrying about occasional odd behavior that's worse than usual and reminds me of last year, but the last couple of days, that's died down too. Overall, she is just much more focused. You mentioned the possible side effects - I know I agonized over that too before doing this, but I think one of the worst ones that I found had to do with potential renal failure, but when I explored that further and some of the other more severe side effects, it turns out that this relates more to people who actually have other diseases that leave them predisposed to those kinds of things - not a healthy young child. I would have to say that the worst of it is the nausea and headaches that can last up to 5-6 hrs on the second night. I can't say that it was pleasant, but it probably wasn't worse than when she had her horrible fever and headaches during the infection which caused all this a year ago. In retrospect, I would do it all again to have gained what we have so far - even if she didn't improve any further than she has now. Dr. K. gave us his cell phone number and said to call anytime day or night while we were in Chicago. I could have called him that awful night and woken him up - he wouldn't have minded. But I was expecting this and we dealt with it. Obviously if something would have gotten worse (like that she needed hydration, he would have helped us out with that) Diana had called him the week before & he was ready to open the clinic for them and start an IV - that wasn't necessary for them either. Pat

Buster, you had asked me about Gaby's twin - they are not identical, although both had speech/language delays (Gaby's is more severe than Stefi's) Stefi can blend in pretty well - doesn't affect her school work - she excels and has no social issues. Gaby's delay though is more severe - affects her learning somewhat and makes it hard for her to seek out friends or be sought out - she's lucky that she has her sister to latch on to which broadens her own social circle. Since she sounds very immature when she is talking and says things in kind of an odd way, it makes it that much harder to sort out sometimes whether its panda silliness or just her developmental delay. Certainly the PANDAS has made an already difficult situation much worse - since its that much harder for her to make progress. Pat

Now that she's stable on zith, have you thought about taking her off prozac to see if that isn't needed anymore? Seems like a shame to keep her on those kinds of meds if unnecessary. However, I can imagine that it would be a scary thing to do - just in case it would bring on the symptoms again. Pat

Sarah, I was curious - did they put your son on prophylactic antibiotics right after the first IVIG? and if so - which one? Also about the yogurt and probiotics I heard the same thing - that some actually cause exacerbations - I had a hard time finding one that was recommended (it begins with a B - something like Burgallis maybe? Anyway, I went to Whole Foods and they didn't have anything in kids strength that just had that particular strain - most of them have a mixture of different ones - are you or anyone else aware of where to go for the best kind?

I have heard that it makes a big difference the type of immunoglobulin used and I've heard Gamunex is the best - also I have heard from a guy who is doing a study at Yale and from two separate doctors who do IVIG (one in Florida) and Dr. K in Chicago who did our IVIG that smaller doses spread out over a period of time have been proven to only help for short periods of time and then you have to do it again. Supposedly if you give 1 1/2 g/kg of body weight over 2 days it should be much more effective. I guess I'll find out in a few weeks if they were right since Gaby just had hers done a week ago. Pat

Sarah - I know that your son has had 3 IVIG's, but I really would like to know how many grams per kg of body weight he has been getting. I've heard it makes a big difference in the success rate. I've heard that when they give smaller doses over a period of time, it helps, but doesn't completely turn things around. Pat

I don't think its yeast because she just started the antibiotics 3 days ago and has not been on any for many months. Also I immediately started her on live cultured yogurt & other probiotics. They say that the probiotics you use should be the refrigerated kind - anything else is not as effective. Thanks for your thoughts.

I sure hope it's just that - the"turning back the pages" - I am really curious how that actually works or why it does. I mean - what could bring back behaviors or even actual conversations that she had a year ago? I'd like to know the physiological rationale. I will be e-mailing Dr. K tommorrow since it will be time for our weekly update which he requests after the procedure. I think I mentioned that she slept really well for a few nights, then had a horrible couple of hours of nightmares & night terrors the night before last. Last night was great again. It's hard to not know what to expect from day to day or sometimes from hour to hour - things change so unpredictably. Thanks again for all the support. Pat

When you say that your son had 3 IVIG tx, does that mean that he had 3 separate treatments of 2-day infusions, or just 3 infusions totally? and also I was wondering about the dose that he got each time. What my daughter got was 1 1/2 g/kg of body weight. Thanks.. Pat

I need some help out there. My daughter had IVIG last week and in general she seems better than before (She has no more tics at this point) She seems less spacey & more focused most of the time. She seems to be in a good mood most of the time. However, every once in a while (either early in AM or toward evening she seems to get very angry or very sad (like she used to do with her first episode last year). This most recent episode had been pretty mild with mostly tics & lack of concentration, but no real angry outbursts or crying or paranoia. Now it seems that these things are appearing randomly. Also she was started on augmentin 3 days ago (this is part of the post IVIG protocol) If antibiotics are supposed to be helpful, then why is she still having these weird symptoms? I assumed that even if it was still too early for the IVIG to completely work on turning things around for her (I've heard it takes weeks sometimes) then, at least I thought the antibiotics would definitely do the trick right away. Any thoughts?

you know, my daughter has a high lead level too, and I've often wondered about the daily baths with the rubber duckies which supposedly were chock full of lead from China.

Hi Pat, I haven't studied this area of IVIG symptoms and their progression. The best I've found so far is section 9 of http://www.emedicine.com/med/topic3546.htm where they outline all the really awful stuff that can follow with IVIG. Hearing your dd's symptoms, you definitely should talk with your doctor/neurologist about what you are seeing. There is a rare form of aseptic meningitis that has been associated with IVIG http://www.annals.org/cgi/content/full/121/4/259 that can drive such extreme behavioral changes. It wasn't clear from your post whether the emotional lability was there before IVIG or seemed to be result. Are you treating the headache and nausea with anything? I'll keep looking, ... Best wishes and thoughts, Buster

Hello Indigo, My daughter had IVIG this past weekedn with Dr. K in Chicago. He was very knowledgeable. It made her quite sick after the second day, which we expected (having talked to a couple of other parents who have gone through it) The infusions themselves were no big deal. But after the second day (around midnight) she woke up with a tremendous headache, vomited about 6 times over 5 hours and had a fever. The next day she just mentioned a little headache once in a while - no more nausea. Very important to hydrate ahead of time & push a lot of fluids before they start vomiting. As far as diagnostic codes go, he did give us a couple. One was for encephalopathy, I believe. I have submitted info to our insurance, but I'm not holding my breath. Pat

My daughter just went through it this past weekend, and she threw up about 5 times & had a horrible headache and stomach ache for about 5 -6 hrs. It has something to do with the intra cranial pressure. Pat