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Everything posted by eljomom

  1. if ivig helped a ton, and lyme treatment is NOT helping, I would just guess that maybe it wasn't lyme? I know, I will be hated for saying that by some. I still believe that there are people being treated for lyme "clinically" that fit the wastebasket diagnosis....no positive tests, just "clinical" lyme diagnosis based on neuropsych symptoms only, when it might not be lyme. EVEN WITH positive Igenex. I have looked at Igenex, and still think that it is picking up +'s on some bands that are not actually lyme, but yet it's being called positive for lyme. my personal feeling at this point, is that in some kids, Pandas triggers an autoimmune response which then comes and goes with infections. I think in other cases, while there may still be an infectious trigger, it is "THE TRIGGER" that switched on the gene in predisposed people (predisposed to having ocd, tics, etc...).
  2. well, your kids sound like 2 of my girls. had some occasional tics previously, etc....then the explosion. we are still riding the train, not taking the step for ivig until there is clear evidence it will be worth it. I know some will disagree with that decision, but having heard of about as many that have NOT been helped by it as have, it's a crapshoot at best, and there certainly are risks to it. There have been kids how appear to be slam-dunk PANDAS who have NOT benefitted whatsoever from ivig. I think it's great that your daughter had improvement on abx, and I, too, would keep her on them, and also get your other child on them. EVEN if you do get in to a pandas specialist STAT, you will be faced with the basic decisions of whether you feel your child is severe enough (that is debatable amongst us parents vs. the doctors) and if you would even do ivig, or steroids. other than that, there are many rabbit-trails to go down from supplements, to holisitic, to homeopathy, to the Lyme route.....all I am saying is that I agree, April stinks. We had to wait 4 months for our first appt. But that was our only option with a pandas specialist. I am curious about the statements made by the doctors: "we were to put her back in school for her own good (we currently homeschool)." Why would public school be "for her own good?" We, too, homeschool, and I read an article by Leckman et. al, last year suggesting this same thing for kids with tics. That they do better in public school because they are more engaged and have to learn to control their tics more than when they are in the comfort of their own home. Also, you said the other doctor "didn't seem worried about the damaging effects of homeschooling"---again, what are the "damaging effects" of homeschooling?
  3. ...just thinking/worrying out loud here. Thinking about the NIH study, and how they are only allowing children in who's symptoms are less than 6 months since starting. Is that because they feel it ONLY works well then? Or because they KNOW it works then (early), and want to "prove ivig works" and are sort of "working it" to make sure they can show that it works? My point is, if they do have positive outcome of this trial, will the next hurdle be to convince doctors/insurance that kids who have had symptoms longer than 6 months should still be given ivig? is the study just blazing the trail for those kids in the future who are caught early? Which is still wonderful. But will it truly help kids who have had symptoms longer?
  4. I know of a mom who's daughter received low dose IVIG and it sent her daughter into a tailspin beyond words. They then did high dose, and it immediately helped. NOT a cure, but did stop the horrific episodes she attributes to the low dose ivig. I am hoping she will chime in here...
  5. Our immuno. suggested giving the adult dose of a vaccination....I guess pneumo??? DD's IgG is normal, but some of her titers that were tested for strep pneumo were a bit low. According to our first consult with a pandas doc, they were "fine" and "she responds well" and our second pandas doc didn't blink and eye at them either. Then the immuno. was dotting marks next to a bunch of them, saying they were low.....but I too have heard NO VACCINATIONS, so it scares me to try this wiht a pandas child JUST to see if they respond to vaccinations. I mean, how will this honestly help with the AUTOIMMUNE situation? Maybe help to get IVIG covered, but probably at low dose for immune deficiency...
  6. sorry dut----i can totally relate with the husband being a less-than-supportive-and-compassionate listener in all this. In fact, my marriage is shredded over it, and my dd is the one suffering because we can't talk about treatment options, or even her symptoms, without a huge fight. I wish getting out and getting away helped, but it's still all I think about..... I wish I had something positive to offer, but I'm realizing how good it sounds just to hear someone say "yes, this really does suck" instead of telling me "it'll be okay"---especially when it might not. I will offer to forage the cupboard from afar with you though
  7. Melanie-I am just so sad for you rigt now. Mother to mother- I'm just going to say it.....this sucks! I talked for hours last night with a dear friend who just went through breast cancer . I am a cancer survivor myself. We talked about it all. Two things stood out. One is that noone ever just says it like it is. Which truly is- it sucks! Period. She said she would get texts from (well-meaning) people saying things like "make it a fantastic day!" and she said she would get so angry. And my friend is actualy one of the most positive people I know. Which sort of leads into the second thing- unless you have lived it-actually walked in the shoes- you just don't get it. And you aren't always so en encouraged by people who don't truly get it. So...this leads me to pandas16 and her reply to Melanie. First-yes. She gets it from the "having lived it" side of things. HOWEVER!!!!! SHE IS NOT a MOMMA!!!!! Period. So in hat respect, she doesn't get it. Heck, my husband doesn't even get it. I might also add that pandas16 is young and that tends to lend people to sometimes speak in ways more mature adults might not. In any case Melanie- my heart is absolutely breaking for you, and I wish I had some way to encourage you. I truly pray that things will settle. It had to be super stressful to go through pex....and maybe once he is home and in a regular routine again he will settle. I think what pandas16 meant to say is to try to weed out what might be from autism and what is from pandas (not an eAsy task I am guessing) and see if the pandas symptoms start to improve. I will pray for Danny and his body and you and your broken heart.
  8. I don't know about the spinal tap for Lyme. I have heard of it being done, but not always being "accurate," which I think goes for any type of Lyme testing anymore. I've never heard of doing this (spinal tap for NMDA receptors) for PANS......can you enlighten me?
  9. So would that mean that not only would a swab not reach the crevices (we do NOT have multiple strep infections.....). I'm talking about a kid who does NOT swab positive, does NOT have high titers (although even after the 1 strep we did catch, titers didn't elevate). Wouldn't you expect a kid to "have chronic or multiple" strep infections (swab-able) with the strep in the crevices? And wouldn't the strep (even in the crevices) go away for at least a bit after treatment with abx? Sorry for all the questions...just trying to understand. It would be easier to swallow if dd actually swabbed positive and had strep infections. I think that's the part that's getting me. She clearly reacts with NON-STREP things too, so is the doctor just trying to make it all be strep-related?
  10. Been thinking about the "chronic" symptoms, etc....(I know, a shocker there). I am wondering if anyone knows if Swedo, or any other researcher, has separated pans kids into two categories....the ones who truly have pandas-like issues, where they "remit" when infection is cleared, vs. kids where an infection has definitely "caused" the tics and ocd, but where it is more like a trigger that switches on the TS/OCD genes and the kid is "stuck with it." Does that make sense? I know some will think that my dd must still have an underlying infection. We have seen 2 more immunologists....one trained at NIH. He did TONS of bloodwork (B cells, T cells, NK cells, C3' and C'4's just to name a few). And she is showing NO signs of underlying infection or immune dysfunction. He sent us to another immuno. (who is at NIH) and she said there is still more to look at, such as the strep pneumo titers, etc. by revaccinating, etc.... So I do feel pretty confident that we don't have any underlying infection....sorta.... Thanks.
  11. Thanks airial---our pandas doc is adamant that they come out, and we have only had strep documented once (well, that we know about.....). My daughter is "chronic" and dr. says she wont' consider ivig before tonsils are out because strep "could be hiding." I have run this by 2 immunologists, and both looked like that was the craziest thing they'd ever heard (the strep hiding deep inside where abx can't reach, as well as swabs). Honestly, if it's hiding so far away from bloodstream that abx can't reach it, then I wonder how it can also be sending out messages to make antibodies, causing symptoms.
  12. Wow----interesting. I thought Dr. Murphy was AGAINST T& A???? Not saying she recommened yours, ariel95, but wondering what her thoughts are on this?
  13. Not an expert, but if Motrin worked in any way for us, I'd be giving it like candy! Well, that's my "looking from the other side" view. Anyhow, I do personally think that the dosage is more important. I'm trying to think of an analogy, but I don't think that the dose necessarily wears off sooner just because it's lower, but rather that it's less effective because it's lower. My daughter is just 50 pounds, and I give her 200 mg (for pain). Motrin can actually be given in much higher doses fairly safely (so I've been told/experienced with doctors prescribing to ME)....and also been told much safer in higher doses than Tylenol. Not making light of the fact that they are still little beings, etc. Good luck. Just thought of analogy---would you rather have an eipdural work " a little bit" and give it more often, helping just a little..... or would you rather get the "full effect" right from the start.
  14. Wow! Can I ask what labs you used for lyme and bartonella, and what doctor? you can PM me if you'd like. Nice of doc to see a sibling without an appt!
  15. Oh, I by no means meant that you should NOT ask it! Ask away!! I'm all for hearing all the different opinions, treatments, outcomes, etc. Just remember they are only ONE person's situation, and all kids are so different. I hope you get some input here
  16. This is a dicey question to ask on this board. There will be some who say DEFINITELY you have Lyme! Others will say the opposite. I can't offer you advice one way or the other. We still waffle about it. I suppose the ultimate question to ask those who recommend "A" or "B" is what has their outcome been in going that particular course with their "pandas" child.
  17. Did you do the prednisone taper before or after ivig? how long had your son had symptoms before trying steroid taper? did benefits sustain?
  18. I can't remember where I saw posted about the "new definition" of PANS....maybe someone posting about Texas Symposium. Anyhow, I noticed there was NO mention of tics as a symptom. Does anyone know why?
  19. I asked Dr. Cunningham this during a phone conversation last year, as I was wondering the same thing after she mentioned that stress can open the BBB due to epinephrine, etc. But she said it doesn't "stay open"---if that makes sense. So my translation of that is that it is a temporary opening the BBB. But in any case, the anxiety from it increases fear, which then increases symptoms, which increases anxiety. A vicious circle in some ways. In the state I'm in, I shudder to think what I would have said/done had I witnessed that with my own, or anyone else's child for that matter.....
  20. I so hear ya! I've had more than one neuro/immuno tell me that your average joe walking down the street can have antineuronal antibodies in their blood on any given draw. We did try curcumin last year...did nothing for us.
  21. Saw an immuno. Saturday morning, who the local immuno. referred us to. I think his hopes were that she could turn up an immune deficiency to get IVIG approved. She was looking at dd's strep pneumo numbers run by dr. t last year....with the 14 . She wants to give her whatever vaccine for that....the ADULT VERSION, then recheck the strep pneumo, but instead look at 25 of the numbers. I balked at this, due to all the hype about immunizations,, etc. Thinking it's not worth it to do this JUST to get IVIG covered. Anyone had this done? I seem to recall someone posting about an immuno. down in Florida affiliated with dr. M who suggested this.
  22. Pandas16...I think, and correct me if I'm wrong, you might have been asking for more of a scientific/medically-based reason behind the statement we all hear "early treatment is key"---am I correct? IF so, I am very interested in this information too. Especially, given that our pandas specialist MUST know this, and has NOT treated with IVIG. If antibiotics aren't working, wouldn't that be the next step? If so, then why do some pandas docs go right to that, and others, like ours, base treatment on the happiness of the child. Maybe she knows we already missed the boat for early treatment?
  23. i tried the link on pandasnetwork and it didn't work for me. Can someone post it here? I am interested in the 10 good docs too.
  24. This is where I don't understand why upping an antibiotic for pandas child would be of any help if he is reacting to a virus his sibling has.....
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