GraceUnderPressure

I need to share with our family & close friends what PANDAS/PITAND is - they have questions. But they do not have an understanding of medical lingo or a lot of time for reading so I want to give them something succinct & easy to understand. Before I spend time that I don't have on this, does something like that already exist somewhere out there?

Michael, did you try it on just yourself or on your child as well? My ds18 seems to react to viruses rather than strep (plus as I said before, we picked up a bug we haven't been able to clear for months now). I was hoping this might help him with those issues. I talked to Jane Barlow today at Barlow Herbal & she told me that there are several theories about what causes the rash, but they all seem to boil down to some form of detoxing. She was surprised to hear that our whole family developed a rash. Makes me wonder if there is some pollution in our area - or maybe our house - of which we are ignorant. Anyway, my ds18 & ds7 - both my PANDAS/PITANDS leaning kids had the worst rashes of all of us. I was observing that it seems to have affected us according to how dysfunctional our immune systems are, but then that could be related to how much detoxifying we need to do, couldn't it?

eljomom, I totally understand what you are saying. I don't have the answers - I only have my own personal experience & perspective to share. My son is 18. As near as I can tell, his issues started (or at least became noticeable) around the age of 4. They gradually increased over the years. They were bizarre, sometimes annoying, but never intolerable. Then for some reason, allergy season last year hit him really hard & his tics exploded. Only the good Lord knows why. That was followed by a mycoplasma-type infection in June that sent him to a level where he was effectively disabled. We have yet to pull him back from it. Over the years, we tried to eat whole foods & eliminate intolerances & take supplements, but it wasn't enough - he just kept getting incrementally worse. (It's probably because we have always homeschooled him that he did not get worse sooner since we had fewer exposures) Unfortunately, I really had little clue what we were dealing with till very recently. Autoimmunity doesn't go away by itself if you ignore it. In fact, in many of us, it tends to get worse if you do nothing. There is no cure for autoimmunity - though I continue to hope & pray that one will be found soon. And it is true that some are able to get to it soon enough &/or keep it subdued long enough to effect a recovery so there is hope in that as well to make treatment worthwhile. But even without a cure, putting it as much into remission as possible could possibly be saving you & your child from what we're going thru right now.

You totally have my sympathy, emmalily! I am fortunate to have a couple of good friends from a local support group & we have had many a gripefest about other moms in our homeschooling group who have no health issues & are constantly pressing us to "be more involved" (do more!). They are nice women who have NO CLUE what it's like to deal with adrenal fatigue or to feel sick all the time or any of this kind of stuff we're all constantly dealing with. For the most part, it doesn't matter if we try to tell them what it's like because they have never experienced anything like it & cannot relate. I have little doubt that to them we just look like a bunch of whiny, self-pitying, do-nothings. It is frustrating & it hurts, but finding supportive, empathetic people to comiserate with helps a lot! Come here & kvetch to your heart's content! Here's a cyber(((hug)))!

Would like to hear from members who had PEX outside of Georgetown with someone besides Dr. L as we live near Houston, TX & that is a pretty long distance - you can pm me if you're more comfortable with that. Thanks! ~Grace

It's an herb & it seems to be potent. http://www.barlowherbal.com/product_info.php?products_id=38&osCsid=m7q2b7knb52kt7q88g78rtm734 http://www.lomatium.com/ http://www.naturalnews.com/020091.html http://www.healthline.com/natstandardcontent/desert-parsley Apparently, if you are going to have the rash, it appears approx. 7-9 days after you begin taking it & can take ~a week for all the spots to go away depending how badly you get it. You will want to keep that in mind if you decide to try it so you can plan for keeping yourself &/or child at home because everyone will think they have something catching & be freaked out if you go out in public! If you are not as clueless as I was, you can start off much more slowly & carefully & it should decrease the reaction so it's not so bad - if this rash we just had is a lomatium rash as I am thinking it is, then it does feel just as if you are sick with a virus. Ours had virtually all the symptoms of rubella & my ds18 had a fairly high titer for that when Dr. R tested him which really has me wondering! If it is coming from the plant, rather than the plant stirring up something latent, then it does sound kind of homeopathic, doesn't it? Except no dilution! Wish I had diluted it now!

I would be interested in trying something like this with naturals such as turmeric, ginger, resveratrol, etc. Not quite sure how high I would need to dose them though to achieve the same effect. Anyone out there doing something like this?

I know from searching the old posts that several here have tried lomatium. I would love to hear your feedback on it even if you got no benefit. I had read about the rash it can cause before I bought it, but the few pictures that I saw looked nothing like the recent rash my family has experienced which as I mentioned in my previous post about our mystery rash was very much like the symptoms of rubella. Not realizing that it might be lomatium, I did not try any of the recommended supportive measures they suggest for those who develop it, though we were already taking several other immune supportive herbs like astragalus, andrographis & ashwagandha along with OLE & monolaurin. Anyway, I ran across some info & pix on an autism forum last night that have me wondering if my dismissal of the idea was based on a mistaken understanding of it. That & the fact that I thought my DH had not had any & he developed the rash, too - but I asked him last night & he says that he believes he had at least a couple of doses before he went into the hospital last week. Still, every single one of us developed the rash & it lasted longer than 2 days which was not consistent with what I had read about it either. I am going to call Jane at Barlow Herbal tomorrow to ask more questions, but I would really appreciate hearing from those of you who have tried lomatium & what you experienced.

I need to post some questions I have about lomatium, but before I do, I really want to share with you all about my experience ordering from this company called Barlow Herbal (barlowherbal.com). I hope this won't be a problem - this is not meant to sound like a sales pitch - I just want to relate to you all the kindness that was shown to me, because we run in to so many people trying to make money off of our desperation, it's always helpful to know the ones that really care about what they're doing. Our ds18 has been so virally sensitive all these years & then recently we picked up a bug that we have not been able to get rid of for months that our dr. thinks is a virus. While looking up natural anti-virals, I came across info about an obscure herb from the Pacific northwest called lomatium dissectum alleged to be a very effective one & decided to give it a try. I placed an order for 8 bottles of the capsules (SEES-2000) with a small, family run company called Barlow Herbal. I knew we would need more because all 7 of our family members have been experiencing the lingering bug's symptoms, but our money is stretched thin, so I just bought what we could manage at the time. The next morning I received both a call & an email (because I missed her call) from Jane (Barlow's daughter) to let me know that they have recently started offering bulk price breaks on orders of 12 or more but hadn't had the chance to put it on their website yet & they had gone ahead & sent me 12 bottles instead of 8 because it would actually cost me less money that way. A company volunteering more product for less money? I almost cried. They offer a number of different herbal products (though unfortunately most as tinctures which my kids will not take) and I was very impressed with the quality of the packaging as well as the product. This is a little family run company, but it looks as professional as the big guys.

We never really pinned any of my ds18's tics to a particular food intolerance (sugar, chocolate & pizza did seem to cause an increase in tics prior to this last year's exacerbations that are now so bad we don't even see any difference any more) You do want to go carefully & transition rather than jump into anything with both feet - shocks to the system are an esp bad idea with our kids. We did try to go SCD (specific carb diet mentioned above - see pecanbread.com for more info) while also avoiding all sugars - even most fruit - to help with yeast issues, but my ds's serotonin was low so it was too much. If we had done it suddenly rather than gradually, it would have been like yanking the rug out from under him. From the research I have looked at on PubMed & things some of the DAN!docs are saying, it appears that it is more an issue of adding to the stress of an already stressed body & immune system. There are so many things in processed foods that our bodies deal with as toxins - it is like trying to force their systems to deal with an additional battle to all the ones that are going on already. We don't want their immune systems to flare up any more than we can help it, so the more inflammatory foods you can remove or reduce, the better.

I thought Dr. K was supposed to be doing an ivig study? But his name is not on this one

Any idea of how one would go about finding this information? Does ARI track it like they track (or at least used to) who does IVIG? Or do one of our P's sites keep track of it?

Thanks, eljomom! I'm going to try to get a copy to my son's neuro. He seems open to the info. I was too new to all this when we saw him back in Sept to talk very intelligently about it, though I did at least give him the NIM statement which did seem to impress him & he thanked me for it. Maybe he's just a good actor, but he did seem sincere, & since he did express interest in hearing back about my efforts, I thought I would go ahead & try. My moniker is just my pun(n)y little joke - my name is Grace and I am definitely under pressure, but sadly I do NOT exhibit grace under pressure - just wish I did! Though I do keep praying for God's grace to help me survive under pressure!

I'm sure someone with more knowledge & experience can provide some really good suggestions here, but I was just wondering if it would be possible for this student to work on a laptop?

I found this one by Murphy, Kurlan & Leckman - is this the one you mean? The Immunobiology of Tourette’s Disorder, PediatricAutoimmune Neuropsychiatric Disorders Associatedwith Streptococcus, and Related Disorders:A Way Forward

I haven't had time to do a whole lot of digging with all that we have going on over here, but from the little bit I've done, it looks like it is almost impossible to get PEX unless your child is completely incapacitated. (At least over here in the Houston, TX area) My ds18 is close to incapacitated, but technically still functioning so I don't know that I would be able to talk anyone into approving it here & we can't go to DC. (My DH is being treated for a blood clot in his carotid artery & may have to undergo surgery in 6 wks) I've been wondering - is anyone doing PEX besides Latimer? How did she get Georgetown to cooperate with her on it? And now that she's not taking new patients, there's no options left apparently. Or will Georgetown do it based on other dr's orders? The little bit of research on this has been inconclusive so it doesn't look like we'll be able to persuade anyone to change unless there is more research on this. Someone please tell me that it's not as impossible as it looks from here?

I'm certainly no expert, but I would think it would be easier to find a dr willing to treat Sydenham's than PANDAS. (From my very limited knowledge, PANDAS does often look like a -relatively- milder version of Sydenham's)

What is Leckman's paper? P.S. I could not have done even half as good a job - thank you so much for being such a great advocate on behalf of all of our families!!!

Fifth's & roseola are possibilities, but we did not have the characteristic "slapped cheek" rash of Fifth's that's supposed to come first, not even in the younger ones, at any point & we did not have the high fever that's supposed to be characteristic of roseola (plus it's supposed to be mild in adults if they even catch it, & both my DH & I got it, & mine was as bad as the kids). Whatever it is, if it's a known disease, it's not following a completely typical course for any of them; & if it's an unknown, then I figure we should treat it with the same caution since it has so many of rubella's characteristics, it may also have the same terrible effects on babies in the womb. We'll be asking the dr to rule out all possibilities though, including those diseases, when we get our unvaxed kids tested. Thanks!

We tried it, but unfortunately, it seemed to make my ds18's tics significantly worse even in small amounts so I gave up & moved on.

For us it was a form of reassurance as well as a chance to contribute to Dr. Cunningham's research. Our PANDAS dr. had already decided to try treatment for our son based on his clinical presentation so he just shrugged when our results came in, but for us (now that we have settled what ds's numbers mean) it reassures us that we ARE on the right track & we feel a bit more comfortable trying the antibiotics & ivig than we did before.

I have a dream that some day I will be able to have a conversation with someone about a subject that doesn't have anything to do with my kids' "issues"... I have a dream that some day I won't have so many things juggling in my brain that I can actually think clearly again... I have a dream that some day REALLY SOON a cure will be found for autoimmunity...

DH says the dr just shrugged his shoulders & said 'no telling!' just recommended the usual itchy rash remedies. All I could think was that he must be totally convinced this couldn't possibly be rubella (actually, knowing my DH, he probably didn't even bring the possibility up with the dr)

We have used OLE off & on for years and in the beginning we used to see an initial increase in tic in my ds. I found that by backing down the dose & increasing more gradually his body handled it much better, but I imagine it would depend on the person's individual sensitivity.

I read a young man's story of what it was like growing up with tics & such when his parents did not understand & thought all he needed was more discipline - it was so sad. That strengthened my resolve to be my son's advocate not his adversary (esp since we had been dealing with his issues in their early stages with firmer discipline because we were utterly clueless about what was happening). It still hurt when family said critical things - esp. things that I learned were being said behind my back. But I kept communicating when it seemed appropriate. I didn't think they would change, but my DH & I decided we could only do what we believe to be right towards our families while first & foremost protecting our ds, & they would have to answer for how they handled it. To our surprise, a number of them have been persuaded by Dr. Cunningham's research & our ds's lab results. It also helped that we explained more about our ds's problems because there was so much that they never saw or had misunderstood & I encouraged the questions though when they were inflammatory I tried to reframe them. I have no doubt whatsoever that we still have skeptics criticizing behind our backs, but at least we won some of our family members over. Still, even within my support group of parents dealing with special needs kids - my friends from there are very sympathetic, but NONE of them understand what it is like to deal with this. That is why this forum has been such a lifeline! I wouldn't wish these struggles on anybody, but I am so grateful that since we on this forum are stuck with it, we can at least lean on each other for empathy as well as information & experience! Know that you are all part of our prayers every night!