eljomom

burnelll-----sent you an e-mail...

Burnell---what do you mean "Nih is all done. Dr. M is all done."? ARe they unwilling to help? Or have you decided against seeing them any more? Nih is all done. Dr. M is all done. We saw Dr Smith a few weeks ago in NJ. Smith, M and NIH all think we should haev another ivig done. we are having more testing done. The IVIG in May knocked out 80% of her OCD in June. But is July it all cam back and much worse. ABX we have tried are amoxacillan, augmentin, augmentin XR, zithromicin, and biaxin. the psych meds haev helped but only maybe lowered the OCD by 20%, she is not having panic attacks but still has lots of OCD.

What kind of doctor are you seeing to heal the gut? I agree with your assessment that there is something going on that allows the body to develop an autoimmune disease. Prior to discovering 2 months ago that our son had PANDAS we had been working on detoxing his system and we've been working on healing his gut for 4 years. Now finding out that we have to put him on antibiotics to get some what "normal" behavior has been difficult. We're working in tandem with a doctor that is very aware of the gut and wanting to make sure we don't end up with yeast issues. What have you done to help with the underlying issues? Julie

Pandas16...very interesting!----quoting "Maybe look at chronic infections too- but I think what more should be looked at is "what's allowing these chronic infections to wreck such havoc?" We just saw a local immunologist (who trained at NIH, but didn't know who Sue Swedo is), and I asked him some questions, one being testing for chronic infections. He said "I'm not going to chase down infections....I want to know WHY she has HAD pneumonia 4 times, and WHY it is causing autoimmune issues." Praying maybe this guy actually is onto something for us. I wish I'd seen waht all he was testing, other than what I heard him say (NK cells, T, B, c3, c4....)

I would be curious to know how well-served a Pitand child (and aren't MANY pandas kids also PITAND after the first strep episode??...another question) is really by giving prophylactic abx for 2 reasons: 1) won't keep viruses or other inflammation away, and 2) doesn't always even keep strep away, as many can attest to. Also, why aren't all docs recommending T&A rather than proph. abx for Pandas-only kids, especially? Do you think there will be opportunities for parents to speak directly with any of these doctors??

I have heard 6-8 weeks, and continues to rise after that. In our case, however, there is no rise after strep. The problem is that you don't know what her "personal rise" will be. Maybe she just had it 6-8 weeks ago, and is just on the rise, or maybe she had it in May, and hadn't risen yet, but has risen and is now dropping. I think you will likely need another one in a few weeks to a month???? Not a doctor, just a mom....

No....not at all Used to exercise ever yday, haven't done it since this hit....almost a year and a half. I do NOTHING to take care of myself, good point!

The immunologist we saw today said he had seen some kids who saw a doctor in Connecticut who treats pandas....would like any feedback if he was ultimately helpful for you. You can PM me... He is in northern Virginia...

mati's mom... I was wondering if you were one of the people who had seen him after seeing DR. B.....

I noticed that most of the patients who got better were also on psychotropic medications after too. This is also where he states that pandas is a genetic predisposition to reacting to exposure, viruses, etc.....again, this makes me wonder how T&A helps...especially in a pitand case. Still considering it, however. Of my 4 kids, all have or had tics. The older 2 had Tonsillectomy and T&A. Both had transient tics at some point AFTER the surgeries, but aren't on my radar right now. My younger two....pandas dd had adenoids out 2 years ago, her sister, all intact, and is ticcing now, and ocd'ing....Maybe just snip them both together. wonder if you can get a 2-for-1 deal on that

momcap...did your son have repeated strep, or were tonsils taken solely for pans?

Dr. L says to "expect" a flair following surgery. It is causing major inflammation, and a flair is to be expected. Still weird to me, though, why they would suggest it just for pandas, if inflammation alone is enough to still give pandas flairs....if that makes any sense?

holy crow---that is awful! How old was he?

"the strep hides in crevices within the tonsils, where abx can't reach." I always wondered why, if the strep were "hiding" in the crevices where abx can't reach, how the culture would be positive? Does that make sense? Or....So if the strep is hiding in the tonsils, the child could still swab NEGATIVE, but still be reacting to hidden strep? I think this may be what angle our pandas doc was thinking, but not really sure. She drew a picture of a tonsil with strep walled off inside, and said how the abx can't reach it sometimes. My thought was if the abx can't reach it, then neither can the swab, thus the negative culture. But if abx not reaching it, then would it be capable of sending an immune message OUT as well? The ENT we saw was going to remove tonsils solely on the rec of the pandas doc. Tonsils were +1 (small he said) and only 1 strep (known).

I'm not sure if this doctor will be able to help us, really. But who knows, right? He definitely doesn't know a ton about it. I told him about the Cunningham test, showed him the results, and he said he would have no idea how to interpret the results. He also said the same thing that the other neuro. we saw said about antineuronals...that if you tested 20 women walking down the street...healthy women...there would be a number of them who had antineuronal antibodies. This gets back to the whole BBB thing maybe? kimballot...when you say "starting up IgG" do you mean IgG therapy? I don't think that's what he's talking about. It was testing IgG levels to certain foods vs. IgE levels. But if you were talking about IgG levels, I will ask him about the study at next visit.

I had myself a wreck going to the appt. today. Not knowing what to expect, and getting what I expected. A blank stare, after reading through my dd's notes, and "What can I do to help you?" I really, at that point, wanted to just find an "EASY" button, push it, and be on my way. So I tried to start the dialogue, and asked what he knew about pandas, after giving my first few symptoms (thinking, this guy probably thinks I nuts...which I am....telling him about tics, ocd, handwriting issues....). He said he knows about it, but is not an expert. He trained and NIH and had never heard of Sue Swedo (but wanted her name so he could call her!). Also wanted to read what I printed, and gave me his e-mail and told me to remind him on Monday "Did you read it yet?" Anyhow, he said what he has to offer, is looking at her immune system in a way that he says should have been done a long time ago, after she'd had pneumonia 2 of the 4 times she's had it in her young life. I told him that my dd seems to get sick much less now that her pandas symptoms are worse....anyhow, he said the Immune panel, IgG levels, etc. is great for a once-over. Good to have done. But that he is going to look at her immune system in a way that will hopefully tell WHY it is acting the way it is. Over-acting, under-acting. He mentioned that he's seen some patients of a doctor up in Connecticut. I showed him the list someone e-mailed from Dr. B's testing, and he said he'd seen it. I asked about many of the tests that were recommended here, and he is doing some of them. He said he wants to do this, and then see where to go next. When I asked about viral panel, etc., he said he was not going to chase infections. If this is an immune system error, we want to see WHY it's having the errors. I also asked about allergy testing...he said that is a small potato and that we would do that if we turn nothing else up bigger. I asked about IgG food testing. He said they did a study with people with peanut allergy, to see if they had IgE or IgG, or something like that. He said that it showed that "allergic" kids had IgE, and non-allergic people ALL had IgG to peanuts. Basically, if you eat a bunch of hamburger, it will show that you have IgG to beef. That might explain why when people get IgG testing done, they are often high in the things they eat the most, and it's explained that we "crave what we shouldn't eat," when really we have more IgG to it BECAUSE we eat it. OR, it might mean that IgG causes just a different type of allergic (or sensitivity) response...that latter part is my own thoughts. So what tests did he run, with 6 vials of blood, to needle sticks, extra water, and down to the last drop of blood (literally)? I have no flippin' idea! I do know that he's looking at B & T lymphocytes, NK cells, etc...and C3 and C4. Not sure what he'll have to offer us, but if nothing else, I hope my dd's situation can give all of us more information about this. He says if there is anything questionable, he is going to refer us to some guys in Fairfax to go further in labs. Will keep you posted.

No worries tampicc! I really do try to keep close eye on your situation, and am happy that the ivig has helped you. I have gotten PM's from a few parents who's kids tic, and IVIG has not helped, nor has pex, so I keep a keen ear out. Thanks for all your encouragement you've given me in my crazy moments..which is pretty much on a regular basis. Starting to wonder if I'm an adult pandas-gone-wrong person. Seriously.

I appreciate many of the replies, and some I could have done without, but that's what this forum is for. To support, to vent, to listen. Tampicc---you are one I watch often because of our similar situations with ticcers. I ask...maybe in a panicked way...because I go through periods where I am able to be thankful that she is happy more than not, and then I get thinking again about now it's NOT NORMAL...even if she is happy. I ask the same questions over and over, because philosophies and responses to treatments change like the wind on this forum. First it was Dr. K's 1-2 IVIG protocol...now it's Dr. B's repeated. Then it was a big LYME explosion. Just so many different things...and I want to know what is current. Maybe someone has more info. now, since all of this is truly just coming about. When dr. latimer first mentioned steroids, or dr. t---can't remember....a BUNCH!!! of people here jumped quickly on that and STRONGLY recommended ruling out any chronic infections prior to steroids.....lyme, myco p, viruses....I got PM's galore on that one. So that gave me pause, and concern, about steroids. This forum has helped and possibly hindered (not BLAMING, for those who are jolted by that statement...I truly am not)...maybe "steered a different direction" would be a better way to put it....but that steered me away from trying steroids until ruling out infections, etc. "You seem so frightened and unable to make a decision." You are correct. I am. Frightened and unable to make a decision. Wow, hearing that out loud makes me really feel like a loser mom. mama2lex---you are correct. I won't give up until I am told "there is nothing else to do"---and I have yet to be told that. It was just another of my many paralyzed, overwhelmed moments. Seeing another child with it in our family....it's just too much sometimes. And you are correct again, that the biggest thing for us, like you said, is to "not rock the boat." I know it can get worse....I've read about it here, and my heart breaks for those kids. At this point, my daughter has TS and ocd. What we will do about it, not do about it, or what caused it, remains to be seen.

Would give an arm and leg to go.....considering checking into my husband's miles points on his company card....but would rather use that to fly dd to a specialist for a second opinion. Do you think it will be something worthwhile for parents, or really just treating practitioners?

Burnell---how did you get in to see Dr. Swedo??

I actually followed this thread with Dr. Goodman....in fact, at one point, I felt he may have enough of a grasp on pandas that maybe he would be a good doctor for someone local to see. He does say, in the thread of comments, that flairs will still occur even after tonsillectomy. That sort of let the air out of my bag. At first, it sounded like the be-all end-all, given what was being said. And it made sense. And there were real patients with real success stories. But when questioned further, Dr. G does say that there will still be flairs when exposed to strep.......

Thank you! You eloquently expressed what I really was feeling in my heart 100%....I guess mine is just murked up with the emotional and mental exhaustion of the whole thing, sprinkled with some guilt...but thanks for what you wrote...it gave me peace.

No worries LLM. Truly, we are all momma bears here, that's all. A bunch of different species of bears, but momma bears, nonetheless.

Jonos mom...no I didn't...did you PM it?

LLM--we have $6000 in-network deductible, and $12,000 out of network. LLMD's are out - of-network, so no repayment for us. Quoting "I think what has people upset is not that you feel this way, but that you seem to feel that none of us have also felt this way"---THIS IS NOT TRUE!!! I suppose I can understand how you all can feel that way, but I DO KNOW that WE ALL FEEL THAT WAY! Or some of us, anyway. there are plenty who KNOW beyond a shadow of a doubt their kid has pandas....and they are lucky, in a twisted sort of way. I am a bit offended myself at this point for those who have taken my words and twisted them into something they are NOT. You have attacked my character at this point, you don't know HOW I feel about all of you and what you've been through. I am caught in the mess of trying to explain why I have NOT done some things other's have, because those who have suggested things, and I haven't just done them, are offended. AGAIN, everyone on here is a parent. Period. And while I do believe many of us know ions more than most docs, I can't think for a minute that some of the specialists out there don't know more than us. So I've followed ours. And now I'm regretting not doing things different. When I posted this topic, it was based on the realization that I think I really screwed up by NOT doing more, NOT ignoring our specialist, etc....and too much time has gone by. I know I ask the same questions over and over...I get overloaded and can't keep stuff straight anymore, and it gets lost in my mush of a brain, so I ask again. I also ask, because it seems doctors change their thoughts on things too..... Treat, don't test??? You are one of the people who's test (the c3d, etc...) I have asked for numerous times. I don't have the luxury of having some of these questions answered prior to treating. So I want the answers before I treat. They must be worth something if people are posting left and right about testing for them. Dr. B runs tests galore. We have had minimal tests run. Will they show us anything? I don't know. Our immune panel was reviewed by a neurologist. I want it run by an immunologist, and I can't get to dr. b right now. And while I appreciate your firm hand in telling me to treat...with all due respect, I AM treating her. She is on the abx that our pandas specialist put her on, and I can't get ANY OTHER DOCTOR to treat her with anything else!