tpotter

In what way is communication impacted for her? When not in a flare she communicates (mostly wants and needs) through gestures and her iPAD comm. program. When she flares, she has great difficulty doing this- I don't know if its because her thought processes are interrupted, or she is physically incapable. Maybe brain fog coupled with motor skills (perhaps like the difficulty many kids who can write suddenly have with writing?)

Just heard yesterday that the shot is only turning out to be 55% effective (I don't know how they even calcluate that one,) and as I suspected, it's because of the strain of the flu going around. The problem with the flu vaccine, is that they never have any clue year to year which strain is going to go around, and they make these shots up under pure speculation. They also do not have sufficient testing, and they put a lot of other things in. My DS20, who I now know had PANS for years before we figured it out, had his first really huge flare after the flu vaccine at 15. Became suicidal and massively ragey. It was the straw that broke the camel's back. Personally, I see no reason to get a flu vaccine when they have no clue what they are even developing, anyway. BTW...DH had the vaccine, and still go the flu, anyway this past week (slept in another room to hopefully keep me from getting it.)

This is my feeling, too. I suspect you are not treating all the infections. Since this is autoimmune, these kids tend to have more than one infection. I would definitely look into lyme and co-infections, but remember that the Quest/Labcorp WB are only about 50% or so accurate, so if they come back negative, there's still a 50% chance it may be wrong. I would also look at the possibility of staph, candida, c-diff, h-pylori, and viruses, as well. Are you treating the gut? Dr. Cunningham has repeatedly said that the gut is the 2nd brain, and you have to treat it properly. Once we found lyme, bartonella, babesia and erlichiosis (none tested positive at first, but he did have the bart rash that we didn't know was anything more than stretch marks), and started treatment, the flares got much shorter, and we have way more better days than bad days. Although steroids do help in the short term, my concern is that IF you are dealing with lyme and co-infections (which I'm not saying you definitely are...just 'if'), the steroids will make it worse, as they feed those bacteria. But, if you aren't already, I would consider using some ibuprofin temporarily to relieve inflammation, and then get some of these other tests done.

In what way is communication impacted for her?

My younger son (not Asperger's) has had episodes of stuttering, word finding, lisp, and dysarthria at his worst. I know the dysarthria has to do with weak muscles or low tone, and he does get sudden loss of tone during flares, so I'm wondering if maybe the speech issues have to do with the sudden change in tone? I'm just so curious as to why, if so many of us, as I suspect, have children with language issues, it is not included in the white paper or on the website (or in any real literature that I can even find?)

I have one son who is diagnosed with Asperger's syndrome and another who is not diagnosed with Autism, but who has demonstrated difficulty with speaking at various times during PANS flares. In both cases, I have seen tremendous improvement since treating for PANS (in my children's cases, they are dealing with multiple infections, and mold, plus I suspect immunizations played a large role.) The current research for PANS does not make mention of the correlation of language and social skills as symptoms of PANS, but both my children had tremendous improvement in language and/or speech skills (depending on the child), and my son who is diagnosed with Asperger's had tremendous improvement with social skills since starting treatment. This is an unofficial poll, meant purely for seeing what other people have found about the correlation between Autism, Autism-like, and/or symptoms typically associated with Autism (language, sensory and social skills deficits) and PANS. I know that sensory deficits are currently mentioned in the list of symptoms for PANS, but I included it in this poll, only because the three symptoms of language, social and sensory are the 3 common symptoms of Autism. Even if your child is not diagnosed with Autism (like my younger son), but has language or social skills deficits, please answer the questions, anyway. If any of you want to list how your children improved, you can include this, as well. Thank you.

Just saw this post. YEAH!!! For all of you who have kids who rage (mine included), I would seriously check out bartonella and mycoP. They both cause rages. Kimballot, I think it's incredible what your son did with the carpentry, and funding it, etc.

Norcalmom, you pose a good question...how and why is the bbb opening? Personally, I think it has something to do with infection and/or environmental triggers PLUS immunizations (at least in some kids.) Immunizations are not supposed to be given when a person is ill, but doctors either do not realize that the children are ill, or they tell the parents that it doesn't matter. I have heard this over and over again from other parents, and also know it to be the case with my own children (they are now not allowed to get any more vaccines.) DS20 (when he was 18 months) had a severe allergic reaction to the MMR (broke out in hives.) I was NEVER told to either watch out for other reactions or to avoid immunizations in the future, and I was also never asked if my children were sick before giving them, sometimes multiple vaccinations simultaneously (it's even worse now.) DS20 ended up having Asperger's Syndrome, but was not diagnosed until he was in middle school (he had symptoms all along...constantly misdiagnosed with ADHD and bipolar, though.) After starting treatment, and actually doing something as dramatic as giving him IVIG (which decreased inflammation,) his social skills jumped 7 years overnight. That's when I knew that the "asperger's" was actually PANS (multiple infections, and immune system issues!) And, in answer to the original question, I have sometimes wondered the same myself. But, the research does seem to point to it being the antibodies, and not the infection.

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But....they had no clue which flu would be around this year, so how do you know the flu vaccine will even work on this kind of flu? Flu vaccine started my older son's massive flare that ended him in a psych hospital suicidal (I now know he had PANS for many, many years previously, but the biggest was when he was 15 after the flu vaccine.) The only vaccine I would now consider might be TB if my children got cut by a rusty nail. Dr. B and LLMD and DAN docs have all told us "no more vaccines."

Hopefully Dr. K, Dr. L, Dr. Swedo, and Dr. Leckman (at the least) will make sure they are there. But, I have to agree, that I am very sceptical, because it uses the word "hypothesis". I wouldn't have put it past Johns Hopkins to have submitted this one. I doubt very much it could have been one of these people who submitted it, because it would have been listed as PANS and not used the term "hypothesis."

LLM. Beautifully said

Actually, the separation anxiety is a big, very significant sign of infection.

We found C-difficile was our PANDAS infection that was causing big tics and sugar and carbs make it much worse. Very interesting. Also, if that isn't it, you might want to check for food allergies.

I would definitely look at the possibility of mold and yeast like you suggested, and also test for lyme and co-infections of lyme, such as bartonella, babesia, and others. Also, did you ever check for mycoplasma pneumonia? Have you checked for food allergies? I would really suggest that you find a good DAN or naturopath dr. Also, we are currently using an ART provider, who is able to energy test to find out what is going on. If you want more information, you can PM me.

My kids had infections I did not even know about. PEX and IVIG helped them both...dramatically, but they were in extreme exacerbation, and needed something major to help them immediately. But, that being said, PEX and IVIG are not the cure that we all had hoped for. It is extremely important to keep looking for infections and environmental issues (such as mold, chemicals, etc. for instance), as the immune system is going to continue to be on overdrive if you don't deal with it. Also, this includes finding others in the child's environment who are also ill, as the child is hypersensitive to it. Even after all these years, we still seem to keep finding infection and other things (such as the mold we found and have been dealing with since August.) Honestly, it's really hard to totally clear all infections. I really think it depends on just how serious the kids are at the time. My kids were in such a bad state that we didn't think twice about doing the PEX. We did think twice about the IVIG, being that it's a human blood product, but we're now not sorry we did either one of them (IVIG was done approximately 8 times total over a 1 1/2 year period.) I honestly don't know what I would do now if I knew then what I know now about all the other infections and environmental triggers. But, at that time, there is no doubt that it was exactly what they needed. OK...now, for all you new families, I am going to throw a few suggestions out there (based on 5 years of experience treating this.) First, of all, I don't think that PANDAS, in and of itself actually exists (strep only). I think that the paper that came out in Feb, and the new NIMH website that came out in March have it right in saying that it's multiple infections and/or environmental triggers, and that's why they call it PANS. So many of us have eventually found that it was strep, and another infection, such as staph, lyme, mycoP, bartonella, babesia etc. Plus, there could be yeast, mold, chemicals that were sprayed. And, then there's the way the child's immune system reacts to it, and/or clears it. A lot of our kids have turned out to have MTFHR gene mutation which makes it difficult for the child/person to process vitamins/toxins, etc. (LLM knows way more about that than I do.) As it turns out, both my kids have a single gene mutation, and I ended up have a double (homozygous...totally unbeknownst to me, which kind of explains why I have been sick for so many years.) In my family, we have uncovered strep, staph, lyme, bartonella, babesia, erlichiosis, mold, yeast, MTHFR gene mutations, and on and on, and on. So, all that to explain my answer to the PEX/IVIG question. I know there are going to be a lot of people who get upset with me, but I truly have to say it. Only you and your doctor can really decide if PEX/IVIG is warranted, but you absolutely have to treat for more, evenutally. And, you have to support the immune system, and treat the infections, etc. (there are a lot of ways...currently we are doing abx, homeopathy, supplements, herbs, accupuncture, ART, and chiropractics.) If your child is critical, in my opinion, I would definitely do the PEX or IVIG, because they may truly need that (my younger son especially needed that, because I'm not sure he'd be alive today, if we hadn't done that.) He had also been accutely sick for 4 years before we got a dx, and then it took us nearly 1 more year to get a dx. In answer to the question about coding. Our children were diagnosed with post-infectious encephalitis for the PEX, and also were found to have specific autoimmune deficiency (in their case to the strep pneumo titers) for the IVIG. We still had to fight, but eventually won. I agree with LLM, in saying that you would probably be better off spending your money on integrative, LLMD, and/or DAN doc, and only consider IVIG and/or PEX if the child is really critical. Also, for those of you who are new to this, the Lyme forum discusses way more than just Lyme...it discusses all these other things I have mentioned. I really think it's worth looking at both these forums (PANDAS/PANS, and Lyme).

My kids also had PEX and IVIG. Also changed everything. My boys had it at G-town. But, as also noted, it's really important to stay ahead of the game. Neither PEX nor IVIG are cures for PANS. It's important to find all infection, and environmental issues, deal with the immune system, and so many more things. This is truly an autoimmune disorder triggered by infection and/or environemental assault. But, that being said, both my guys were in very, very bad shape, and the PEX was truly needed, and later the IVIG. I would definitely do it again if neeeded. Now, though, we are doing ART for one of my children.

I think this may be your clue. If you have strep (or are a "strep carrier", which means you actually have a chronic strep) you are probably continuing to keep your DS in "sick mode." It's really important to make certain that you get everyone in your family diagnosed and treated for everything, possible. In other words, if your DS has mycoP and strep, I would start with those. My younger son is very much aware when he has been exposed to something. There are a lot of kids at his school, unknowingly, ill, and he can always tell me when one of them (by name) "is sick" (he feels it affecting him, and he notices their behavior changing.) Also, when DS20 came home from college last week for the holidays, DS17 told me that his brother was sick, because "I can feel it." He was right. Within just a few days, DS20 announced that he was having really bad OCD again (didn't help that he had stopped taking all his meds and supplements for the last month!) I am telling you all this to explain why it is so important to make certain that you get all the sickness around him taken care of. Also, make absolutely certain that you are treating prophelactically for yeast. We have been giving our children sacchromyces boullardi for years now (ever since starting all the abx), and we also give them an additional probiotic (make sure there's no "strep" or "s" listed in the ingredients.) It may be yeast that's making him look like he's gaining weight, because he could be retaining fluid. Also, yeast will prevent him from getting well. Good luck, and I've very glad you found this board.

Peglem, I would suggest you post these questions on the lyme forum, because there is so much more that has been tried and tested there. You mentioned cysts and mycoP, and the first thing that comes to my mind, again is lyme and co-infections, because lyme hides in cyst form (that's why one of the treatments is a cyst buster...usually tindamax or flaggyl along with the antibiotic.) Additionally, other things that have been discussed at length include parasites (current threat, and one that I am also trying to make decisions about, because I am positive I have it...just because of the intense itching, and I highly suspect my kids have it.) Then there's all the discussion in the past about MTHFR mutations that make it hard for the body to process all the good stuff we put in (I would PM LLM, because she's got a great understanding of that one), and then there's been talk about detox, detox, detox. There's a lot more over the past 2 years or so that it's been around, and I have to say that I thank God every day that the lyme forum was created, because it was when I finally realized that my childrens' PANDAS was so much more than strep that we started seeing incredible improvement. Now, this is not to say that my kids are cured. No way. My now 20 year old, who is a college student, takes care of himself like a college student, and that means that he eats horribly, and I just found out that he hadn't taken his meds and supplements in over 1 month. DS17 told me within a few hours that DS20 was sick, because "he could feel it." 4 days later, DS 20 announced that he was having a horrible OCD, and that's when I found out that he wasn't taking his meds all that time. Now DS17 is sick, too (DS20 went to the DAN doc yesterday and got a shot of abx, and DS17 is back on once a week of bicillin injection (he had just decreased, because he was doing GREAT, until DS20 came home. So, you see, it's not perfect, but is really tolerable. So, that also makes me think of several other possibilities to check. 1) Are you sure you completely got rid of the mycoP. It's super hard to get rid of, and I'm still having residual problems from my infection. My IgM is still elevated, and DS's IgG still goes up and down. 2) Is someone else in you house ill? Have you thoroughly tested everyone? I was the one carrying around the MycoP, and still may be. 3) Is there mold? I didn't think there was in my house, just like I didn't think there was lyme, but turns out there was hidden mold under my kitchen floor (we always thought things smelled musty.) Mold is another issue that has been discussed a lot on the lyme forum. When mold was accidentally released, we really flared. 4) Unfortunately, none of this is easy or cheap, although there have been some very good, useful suggestions. We found that we absolutely have to use supplements, because, as I am now trying to explain to my DS20...that's what was keeping him stable, and helping his immune system fight. But, I would definitely suggest you look over the lyme forum in addition to the PANDAS forum (they both are good, and have useful info.)

I think TatooMom has made a good point. Sounds like there may be other infections that have not been identified. I know that mycoP can cause rages, as can bartonella, which is considered a co-infection of lyme. Parasites can also cause an awful lot of symptoms as well, and at least 90% of people have them...not all are symptomatic. There is a thread going right now on the lyme forum about parasites. Yeast also does crazy things, and with all the abx she's been on, that is also a possibility. I have only listed a few, and this is not to say it is definitely any of the above or nothing else, but I do suspect she still has something or several things going on, which are causing the screaming. What I have found with my children, is that they end up being sick when symptoms either flare or don't go away. Although called the "Lyme" forum, the people on that one discuss all different kinds of infections, environmental issues, etc. You may want to look at that forum, as well (I go back and forth between them both.) Good luck.

Wow...I'll look into this. Is it necessary to get a script?

Peglem, I know you've been around at least as long as I have (and that's a long time.) But, have you completely ruled out the possibility of lyme? Steriods feed lyme, and that could be what is making her flare so much. Lyme tests are notoriously inaccurate. DH was diagnosed, because he was CDC positive, and he was very symptomatic (although he still denies it.) The rest of us tested negative, even though we are all symptomatic for lyem and co-infections. DS17 turned out to have the Bartonella rash ("stretch marks") that went down considerably about 50% with IV abx that were being used to treat enlarged spleen, elevated liver enzymes, and chronic strep. That's how we knew for sure the stretch marks were bart, and not just stretch marks (as some drs. still try to claim.) It was only after starting treatment, that he tested positive for erlichiosis, and he has had many of the symptoms of babesia, as well (enlarged spleen, elevated liver enzymes, and more.) Mine and DS20 were all symptomatic, and have improved with tx. I know that not everyone has lyme and co-infections, but I do believe it is far more common than people give credit for, and very difficult to actually diagnose. And, the bottom line is that unless all infections are effectively treated, our kids are not going to get better.

Your son became nonverbal at 19? That must be horrible for him.

Just didn't help him. But, he also hadn't treated the lyme properly.

Have you tried other detox, such as charcoal or bentonite clay, and if so, how does it compare?