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Posts posted by eljomom

  1. I think, like I said before, these forums are for US. Good, bad and ugly. WE need to know it all before we make educated decisions. I have started down paths that sounded perfect, then heard about someone having really a bad experience with that same path, and have hesitated. And vice versa. Maybe that has partially paralyzed me, or maybe it has protected my daughter. I think we all are sharing what is working and not working for US/OUR KIDS. Not making recommendations (although I do hear that on here quite often too). Sharing information and experiences. As I also said, it is helpful to know more about doctors as well. Again, the good and the not-so-good. Some people may like that one doctor does multiple IVIG's, some may KNOW that is what they are after, and want the doc most likely to give it. Others are searching more for a doctor that will tease everything apart before going the IVIG route. The only way to know that for sure, is from people sharing here.

    I appreciate BOTH of you sharing your experiences...honestly.

  2. dcmom---totally agreed. If she were that miserable, I would have jumped long ago. But now, as of today, the nonstop blinking is now adding eye-rolling. I am about to go over the edge here! She's had a hard time focusing today, writing is sloppier (can't believe she is writing at all with all the blinking). It is so intense that I can't believe she IS okay?!?!


    I guess the risks from steroids, other than the ones NMom posted this weekend, do include worsening of tics, rebound inflammation (worse than when started), and the big one, PSYCHOSIS! WE do have family history of Tourette's, and also rheumatic fever, so this is part of my dilemna of swallowing the whole pandas pill or not. Much more common the younger the child is. DD is 7.


    I am curious who your other neurologist is....I think you are up in NJ, so maybe I know. As for the 3 local lyme doctors in the area, I know of Beals, McCabe, and who else???

  3. Interesting LLM---I just read that exact excerpt the other day! I believe it was a doctor....Ginger Savely ---maybe she's actually NOT a doctor, that Dr. Jones recommends?? Interesting. Got any feedback on her?


    I think you are right in that you pick your diagnosis based on the specialist you select....I know this, and think this is why I am so skiddish about making a decision.




    I share your skepticism of doctors. Seen too much, learned too much. It's ironic you suggest I've found an open-minded LLMD, because I think I have, but my DH has been feeling badly for several months and got the brush off from our PCP. So he agreed to see someone with a more integrative approach, but didn't want to see my kids' LLMD because he "didn't want to automatically get diagnosed with lyme".


    Now, the LLMD has complained to me about how some patients come to him begging to be dx'd when he doesn't feel they have lyme. So I had to chuckle. I suspect DH is reacting because I've half-kiddingly told him his fatigue must be lyme (and we pulled a deer tick off him last summer before we were lyme literate and we didn't fight for a month of doxy). So he's going to a different integrative MD who will test using Igenex but will also look at other factors and causes. This doctor is not an LLMD and if Igenex comes back suggestive, I will push for DH to them see my kids' LLMD. So I understand your concern. But I think the key for any next step is to find a doctor you can have confidence in, regardless of their specialty. A rheumatologist has one pair of glasses, an infectious disease doctor has another. To some degree, you self-select any diagnosis based on your specialist.


    Here's an excerpt from an interview you might want to read. This woman has a practice in the DC area and is highly regarded in lyme circles.

    "Lyme disease symptoms are vast and varied. How do you diagnose Lyme, when all the symptoms can manifest so differently from patient to patient?


    Right. Well, I always tell my patients that the diagnosis is like putting together the pieces of a puzzle. There are a number of different things that all have to fit together, there isn't just one thing that can happen and make you diagnose the disease. It has to be a combination of factors. If the history is right, in other words there was some potential for exposure, and the lab tests, of course, play some part in this, although they are so often inaccurate. And, if the symptoms fit, the typical symptoms. And, there are a few things on exam that I notice, but these are not diagnostic of Lyme, they just add to the case for Lyme.


    Then, the two immune markers are also very important that we're using right now, in helping to decide whether it's a true Lyme case. Both the CD-57 natural killer cell count, and the C4A complement protein count are measured. And a high C4A and a low CD-57 make us even more suspicious of a Lyme case.


    Each symptom of Lyme disease taken alone is something that probably everybody's had to some degree or another, at some time in their life. It's the severity of the symptoms, and also the quantity of the symptoms that makes one get suspicious. Everybody has had fatigue, everybody's had headaches, everyone's probably had some pains here and there in their life. But when these symptoms become overwhelming and the person becomes incapacitated, then that's something you need to really look into.


    That must vary according to the individual. Do you see patients who think they have Lyme, but do not?


    I actually have had a few cases where I really did not think they had Tick Borne Disease. But, I have to say that usually, by the time they come to me, they're pretty well-screened. They've already been through every other avenue, they've had many other conditions screened out. And also they come to me because there's also a great, high degree of suspicion. So yes, most of the patients I see do have Tick Borne Disease.


    I have though on occasion seen people, and primarily when I was doing a combination of primary care and Lyme disease, I would see people who thought they had it, and I really did not think they had it. But I have to say most of the patients that come to me do have Tick Borne Disease, because there's a self-selection process going on there. "


    You can read the full interview here http://www.lyme-disease-research-database.com/ginger-savely-transcript.html

  4. My inherent distrust of Lyme doctors comes from seeing MANY people, even local people....good friends...go through SERIOUS, MAJOR, RISKY treatment protocols for Lyme, all the while NEVER having one single spot of a positive on ANY test of ANY sort. AND to boot, they are NOT getting better. They will say they feel worse, and blame it on a "herx" but if you look up the definition of a herx....they do not fit the criteria of a "herx." I think some "herx's" are actually the crappy way you feel from the drug cocktails you are on.


    There was a letter written by an ILADS doctor...I will post it if I can find it, but it pretty much sums up what my fears/thoughts are. I think if I walk in a LLMD's office, we WILL be treated with a Lyme protocol. I want more than that. I want a clear-minded doctor who can see things through clear lenses. The list of Lyme symptoms is so long and all-inclusive, and that there's no way you can leave there without fitting a lyme clinical diagnosis. I can make every symptom I've ever had fit me in the lyme clinical diagnosis, but I don't believe for a minute I have Lyme. I have Raynaud's since childhood. Runs in the family. I have rosacea. Runs in the family, etc....but if I went in with those symptoms, plus some others similar, I would be told i have lyme.


    So I don't believe that just an LLMD is going to clearly look at this. YOu have gotten very lucky to find one who seems to do so more than many others I've heard of.


    I know I sound angry and probably even attacking here, I am just trying to explain why I am having such a hard time trusting doctors.


    Just another tidbit about me, and possibly why I am a bit skeptical of doctors......I had a small lump in my neck. For two years, every time I saw a doctor, I asked about it, they looked, told me it was everything from a swollen lymph node to an acne cyst. When I was pregnant with my first child, the lump got HUGE. Like a golf ball poking out the side of my neck. I went to an ENT and he said "Well, this needs to come out as soon as the doctor gives you the all-clear after the baby is born. 99% likely it's benign." Next day, water breaks 6 weeks early, deliver preemie. 3 weeks later, needle biopsy. Cancer. Surgery on dd's due date. Had a good portion of the right side of my neck removed (radical parotidectomy). Luckily, they saved my facial nerve, around which the cancer grew. So, maybe that gives some background on why I am so skeptic of just doing anything a doctor says, or ignores.


    I don't think there's anything wrong with respectfully sharing a negative experience with a doctor, so long as that doctor's name isn't used. This is not a private forum. I frequently google a topic and get ACN responses as my first few "hits". So I don't think it's ok to name a name. But to share a generalized experience where someone can then follow up privately would be a valid post. I feel that the key is to do so in a respectful manner rather than a bashing. "My doctor does a poor job of returning calls" is different than "my doctor shows no respect or concern". Not saying you've said any of this - only sharing my personal opinion of where to draw the line.


    I'm not upset by your personal feelings toward lyme. We all need to follow what hits home and not spend energy on things that don't seem to hold answers for us. But I've always been struck by your inherent distrust of lyme doctors yet your embrace of a Pandas diagnosis despite a lack of clinical symptoms such as strep or elevated titers or satisfactory response to treatments you've tried so far. I have no idea if your kids have Pandas, lyme or something entirely different. It only strikes me that you apply a far higher standard to lyme than you seem to for Pandas or Tourettes. I struggle to understand why.


    I don't have any answers for you. I think in general, the members on the lyme forum have come here from the Pandas forum because Pandas answers didn't work for us. For the most part, we have lyme labs that suggest lyme might be part of the problem. Not everyone uses long term abx. There are many approaches in the lyme world. Some of us have found that other factors may also be at play, such as mold, zinc deficiencies, detox problems, viruses, metals...it's hardly a one-size, one label fits all forum. Will you find anyone on here who has complete remission? Probably not. Do you find those people on the Pandas forum? The people I know who've been lucky enough to get their kids stable don't post on forums anymore. I'm not going to try to convince you of any diagnosis or treatment. I don't get a finders fee for recruiting someone to "the cause". I can only offer my own experiences to anyone who finds them helpful. My kids didn't get well using Pandas protocols - and we tried them all. They are better with what we're doing now. Their behaviors show it, their lab work shows it, their school performance shows it. Are we done? Hardly. Do I know we're on "the" right path? I think we're heading in the right direction. But realize we may need to alter course here and there.


    As Aiden's mom said, there's no lab "rule out". You learn as much as you can and you try what makes the most sense. No one can give you any guarantees or single path to good health. I do hope you find something that brings you relief. No mom should have to go through the wringer you're going through.

  5. dcmom----with all due respect, I don't feel that steroids, in the dosages given in the taper, are "relatively benign." I have had 2 ped's and a neuro at Children's, plus the ENT at georgetown say quite the contrary. In fact, the neuro at Children's said he would give his kid IVIG BEFORE he would do the steroids. the way steroids are given for the list of other illnesses are NOT the dosages given for the tapers/bursts (ie. poison ivy, croup, etc...)


    Our pandas doc IS following NIH procedures with us. My daughter is mostly happy, although as of the past week, the incessant, nos-stop, unremitting 64,000 times a day blinking is taking a toll. Our doctor seems to treat based on a child's happiness...at least in our case. I, personally, have seen how this illness can take a nosedive in an instant, and have heard how treating sooner rather than later, is optimal, and to me, happiness is only a fraction of the treatment plan. If a child has ocd, tics, trouble drawing, etc. that started after an infection, but is generally happy, they STILL have pandas. I don't see anywhere in the lists of pandas diagnostic criteria where "happiness of chid" is listed. And let me be clear, she is happy in a "hyer" way, but definitely is a PILL if things don't go her way, clothing doesn't feel right, etc....


    I would be much more inclined to follow the lead of the doctor, if there was a clear lead being taken, and not one thing one appointment, and the next appointment, it's as if we are a different family being seen, with 180 degrees opposite things being told. You are correct...I have waited this long, likely because of following the Lead of our doctor, who says "don't pay attention to the tics," and "she seems happy, stay the course" all the while my dd's tics have not gotten better, nor ocd, etc.


    dcmom, I truly respect your opinion on this forum, and I hope you will take what I say NOT in a personal attack, but just from what we have experienced. Your girls fit neatly in the strep---severe--exacerbation---remission package, and that is why you have be so helped by this same doctor. From all I have read here, that neat package is quickly becoming NOT the norm for PANS.

  6. I think my frustration is that, in over a year, we have really done almost NOTHING to even "rule out" pandas. Augmentin for a month did not help at all. Zithromax on a super-low, non-treatment dose (of which I asked the doctor on 3 different occasions if the dose was high enough and was told "yes, should be enough"). Then the run around....INfectious disease. ENT. "Don't change a thing....don't pay attention to the tics when looking at healing"----SERIUOSLY?!?!?! So we have not been offered IVIG or PEX. STeroids were mentioned once, but I felt we needed to rule out underlying infections first, which got us sent to infectious disease, which got us to "take bleach baths." So it's not that pandas treatments haven't worked.


    Where did you hear about the lab you mentioned? How on earth do you get a doctor to order from there?



    Philamom - I agree with you. My line of thinking was for pure pandas cases only. And you are right, every case may be different. That is why I think a study should be done. Co-infections, Lyme disease - that complicates everything in terms of steroid use.

    But I don't understand how you can figure out who is a pure pandas case! -- until there is a test, I guess. (I'm not talking lyme,mycoplasma,exc) So many don't have positive throat cultures or rise in aso/dnase, so do you go by clinical picture? But then my daughter was coined "classic pandas" by her clinical picture before we found lyme. You can't go by Cunningham's labs -- my daughter was elevated in every marker.


    Not starting an argument - just thinking out loud. :-)

    Philamom, you are right that PANDAS is just a clinical diagnosis right now. The thing that really stinks, is that it can also look like so many other things so the likely hood of being misdiagnosed is really good...probably depending on what specialist you see, and what they are most familiar with treating.


    The only thing that makes me say my daughter is a pure PANDAS case is hindsight. Every one of us takes a leap of faith when we follow a doctor's orders, it's only when we see success, can we be sure we've done the right thing. If my daughter was still struggling, I would turn over every rock to see how I could help her.


    Eljomom, you have peeked under the known rocks, and are struggling to decide which rock to actually turn over. From reading your posts, may I humbly make a suggestion?...Turn over the rock that has the least potential side effects, since that seems to be your main concern. IMHO, that would be to pursue and rule in/out Lyme. What is going to happen, if you see an LLMD? I'm not really sure because I know very little about Lyme, but my guess would be more tests, and antibiotics and some supplements. That course of action sounds rather benign to me (but I could be completely way off on this). If you are concerned about being taken advantage of, then perhaps another lab? I think MDL is a well respected lab.




    If you don't see improvement with Lyme treatment, than you can add that to your hindsight.



  7. I appreciate your reply, Aidan's mom...I really do. I think if I could find a local lyme doctor who is level-headed like yours, I would go. I do truly feel that MANY, MANY LYme doctors will look at symptoms, and say "It's likely Lyme" CLINICALLY, when the symptoms can be "clinical" for a number of things. I have yet to hear anyone who jumped ship say that their kid is in remission of symptoms. All will say "Lyme treatment is LONG"---so while these people feel they are on the right path, accepting years of strong antibiotic treatment, I think part of it is just that they are doing SOMETHING and feel good about that. But show me a pandas-kid-turned-Lyme who is in remission. I am sure I will enrage a few people here by saying that, and may some day even eat my words. But the bottom line is that the Lyme symptoms list has become so large, that I don't know if I totally, in my gut, buy it. I don't even know if I buy the Igenex labs results, honestly. Some of the bands are known to cross-react with other viruses/bacteria, and I think there is some merit in knowing that.


    As for the frustration with my pandas doctor, to be completely honest, I actually DO think some of it is the ability. The ability to systematically rule out things, make a treatment plan, not contradict statements and any given appointment, follow up, follow through, respond to attempts to contact (especially when directly TOLD to contact).....I'm ready for the comments from parents about commenting on doctors in the way I am right now...BUT!!!!!I come to the boards for real-life data, and this INCLUDES good AND BAD about any and all doctors I may consider taking my daughter to. I want to hear it all. This forum is for the parents, NOT the doctors. It is OUR chance to get behind-the-scenes information. It's for OUR benefit, NOT the doctors! They can certainly start their own forum and talk about all of us crazy parents (although that might be a HIPPA violation). So I am giving my personal, real-life experience here. I know some have fit in the neat little pandas package, for whom our doctor treats aggressively, while others have gotten quite the run-around, like us. Unfortunately, we don't have savings, we don't have credit cards, we don't have 2 salaries, we don't have money to travel around the country and try different docs. We have 4 kids, one salary, and have exhausted every drop of money we have on this, and are now being hounded by collection agencies for bills as small as $54 to Labcorp. So this is all we have right now. There is NO EXCUSE for a doctor to be totally unresponsive ........fortunately, for us, it has not been "emergencies" but more of calling to see where the orders are for testing....after a week, two weeks, 5 weeks. Or e-mailing about a critical "next move" that we were started on, and not knowing what/how to do it. For a number of people, kids have been in absolute crisis, and there has been no response. And that is unacceptable. So those of you who are pi$$ed off at me for saying all of this, it's a disservice to ONLY elevate some of these doctors to GOD-status, ultimate-healer on this forum. That is NOT helpful.


    I am going to sign off now.....I hope anyone who might be offended by what I have written will forgive me some day. I am not only speaking out of frustration, but out of real-life experience and truth, and that's what I WANT TO HEAR WHEN I COME HERE!!!


    Have been waiting for pandas doc to send orders for Igenex testing for over a month. Now, it turns out, I will be filling out the form and sending to them, so doctor can check test boxes and sign, then send back.


    DD7 was tested in November, and was "negative" on the basic lyme panel. But there were IND's on lyme specific bands, and some ='s too. Was told to leave it alone, it's negative.


    DD is still not well. STILL ticcing all the time, with periods of horrible ticcing, still some ocd, etc. I'm not sold on lyme, but before proceeding further with anything else immune-modulating, I want to try to rule it out. We have not yet tested for co-infections, and that bothers me.


    So can anyone tell me which tests would be best to run (assuming I haven't robbed any banks lately)? Definitely want to rule out Bartonella, etc. Is it 5090 (Complete co-infection panel) or 5095 (NEW complete co-infection panel)?


    Also, she was on low doze zithromax for 8 months, then switched to Keflex for strep infection a little over a month ago...still on Keflex. Is it a problem to test for these while on anbibiotics?


    Is there any point in doing the 188,189 (IgG & IgM Western Blot) again? Her Igenex CD 57 was really high. Her IFA was equivocal (?)



    I notice you keep using the words "rule out" for Lyme and Bartonella and there is no test at this time that will do that. (It would be awesome if there was.) A negative test does not mean no lyme or Bartonella. Further testing might just bring up more questions than answers. If you think Lyme might be an issue than I think you would get more for your money to go to a LLMD rather than order more tests at this time. Let the LLMD look at what in your child’s history could possibly be attributed to Lyme. They would also know what tests would be the best to run. Then let your Mom instinct take over as to whether it makes sense.


    We get a full write up from the LLMD after each of Aidan's appointments After the first appointment the write up included all of the findings in Aidan's history supporting the Lyme diagnosis - his IGenex results were just one of many things listed there.


    Also, Aidan was neg. for Bartonella but LLMD thought he had it. Probably mostly based on behavioral symptoms. They also thought a red spot in the crease under Aidan’s eye was from Bartonella. It has been there for years but it just went away about a week ago – I think due to Bartonella treatment – weeks of it.


    Since we believe Aidan was congenital Lyme I decided to have me, dh and siblings tested (local doctor ordered). Dh and I came back IGG and IGM positive by Igenex criteria (more positive than Aidan), other son was IGM positive (band 31 AND 41) and sister had IND on ** bands. When I told Aidan's LLMD the response (in the write up we got after visit) was:


    "even with IGenx testing, it is necessary to review these results with clinical presentation. Western Blot screening evaluates for immunological response to various proteins or simply potential for exposure. Certainly, many patient's with Lyme do not have positive tests and the diagnosis is made on evaluating history, subjective and objective findings. Supportive serologies are often utilized to support the diagnosis as opposed to confirming the diagnosis."


    When I read your posts on the PANDAS board I can totally relate. You seem to feel frustrated with your PANDAS doctor and I think that it is less about the doctor's abilities and more about your gut feeling about your child's fit with the doctor and treatment plan, especially since your child does not fit the PANDAS mold exactly – that there might be something more. We have “ Been there done that” even though many parts of Aidan’s history supported PANDAS diagnosis. (Also with other doctors in Aidan’s long medical history) It seems to me that you are having some gut feelings that the PANDAs-only path may not be the one for your child. There are LLMDs that are aware of PANDAS and will look at that too. Ours checks Aidan’s strep titers every month. Our LLMD was the first that I felt looked at the entire history and did not treat us with a cookie cutter approach.


    But, another option might be be to go ahead and do the steroids once and see what happens. I know Dr. K uses the steroids as a tool to try to see if IVIG was likely to work. We tried that (before thinking about Lyme) and for us it did not show an improvement. Just another option.


    You are a great Mom and you will figure this out for your child – whichever direction it will lead.

  8. This part was interesting: "The reductions in inflammatory cytokines by NAC treatment may be a potential mechanism by which NAC modulates the symptoms of psychiatric disorders. This may be directly associated with the inflammatory pathway, or working through oxidative processes associated with inflammation. Further research is required to elucidate these mechanisms." Sounds Pandas-y, doesn't it??? I thought the inflammatory cytokines are what elevates Cam K....

  9. Not sure what NAET is, and not sure it's an allergy induced type of situation. Hmmm......


    it must be frustrating to have soo many issues at once and not knowing the exact cause.


    you may want to try NAET for tics & OCD. it has helped my kids tremendously and it is noninvasive. NAET works well for tics if it is allergy induced. As for OCD, NAET can also treat emotions.


    i think it is worth a try.


    good luck!



  10. Haha---you found me P.Mom :P I think you ask a really, really good question. I wonder if Cunningham is keeping any kind of data on that. I, too, thought the same thing one time. That high Cam K meant more of an active infection causing inflammation, which abx would help, while antineuronals implied more of the autoimmune havoc, thus needing more of things like PEX?



    I am wondering if the anti-neuronal antibodies may be giving a hint of the bigger picture more than we think. Both my sons tested in PANDAS range for Cam K...one high end...one, low end. But, they both had normal anti-neuronal antibodies. They are both doing really well and responded well to standard PANDAS treatments. (antibiotics and steroids (5 day bursts) I wonder if the kids with higher end ana's have a harder time recovering? Don't know....just a thought. Perhaps others will chime in. I would be curious to know, for those that had the Cunningham test done.....what their ANA numbers were, and how they are doing/responding to treatment.




    yes, me again...Eljomom! :ph34r: Leaving you be now.....

  11. Cunningham's labs.....i also don't think it's specific for strep-pandas. I think cytokines are released from any insult causing inflammation, thus rise in CamK??? Or something like that. Lyme can do it, so why can't something else too? It just seems like one doc will get on something....like myco p...and now everybody has myco p testing done. I still don't know that I believe having elevated myco p titers means ACTIVE infection. I think it means there at least has been an infection, that may have cleared. I too agree that while in some cases antibiotics and motrin are the solution, it makes no sense to me in relation to this being an autoimmune issue, why that would work. Antibiotics and motrin have done nothing for us. Even after confirmed strep 5 weeks ago, Keflex ratcheted the tics back a tad to the normal....still VERY MUCH THERE...tics....and now while still on keflex, she is ticcing every single blink..... I think Lauren "sneezing" was noted to sneeze 12,000 times a day. WEll, I did the math, and with the rate dd is blinking, it's about 72,000 times a day. All of a sudden. Makes me scratch my head. Is it the wound on her knee healing? Or just wacky immune? Or heck, I've even entertained the thought that b/c she's been on keflex so long, that yeast has come to a head, and maybe that caused the overnight explosion. Definitely not one-size-fits-all, and that is very frustrating when trying to make decisions. I still can't even say that we have had "episodes." It was more like: germ ocd.....two years later....added a few tics....few months later......explosion of tics, separation anxiety, horrible drawing.........now sep. anx. is better....germ ocd replaced with tapping/evening up.....tics go from all day every day, but some might not notice them is she is "involved, focused, playing hard,etc." to now the blinking to make me almost have an anxiety attack......


    So how do I really truly know it's not tourette's? sigh.

  12. Weird....since the big blowup of symptoms last June, when my dd had another fever for a few days at one point, I was so worried about it. But she seemed "better"---not totally, but just a bit LESS pandas'y during the fever too. I thnk the craziness starts AFTER?



    On the flip side, and I have mentioned this before, my son does amazing after he gets a vaccine. That is my experience. However, I completely understand why others choose not to get vaccines. They have a different experience.



    Interesting, Pam. Have any of his doctors speculated why that is? I don't recall any reactions positive or negative with vaccines and my girls, but now that we've been instructed no more, I'm following orders. I've always received the flu vaccine for myself with no reaction. When my dd was really sick/symptomatic, she would be "normal" with high fevers...I guess that's an inflammation phenomena.

  13. I have been on the pandas forum (for way too long) about my dd7, who has had some ocd-ish stuff for about 3 years. Same with clothing issues (not "feeling" right, etc...). I assumed it was quirky stuff that would pass. Spring of '10, started rubbing hair, scrunching nose, smelling fingers. Figured it was transient tics. a few months later, in June, she had a high fever for a day, and within a week, the tics increased to over a dozen, head to toe, separation anxiety was bad, just a different child. And here we still are, over a year later. Still ticcing every day. Usually an assortment of tics, and when she is focusing, much less, but watching TV is horrific. The germ ocd is gone, but now tapps things she touches, evens up, etc. IN fact, I have 4 kids, and they all do that to some degree. I guess I understand the evening up...needing things to feel even. My brother has Tourette's and ocd (and had chronic strep and ear infections as a kid), but my father in law had severe rheumatic fever as a kid. Not sure what genetics my husband and i have passed on....TS or Pandas.


    We have tried Augmentin for a month last November. Almost seemed to make her worse. Pandas doc tried zithromax at a VERY LOW DOSE and we had her on that for 8 months while we did the wild goose chase from the pandas doc...Ifnectious Disease, ENT, etc. She now wants her tonsils pulled, even with no documented strep. ENT says her tonsils are small, but he takes out at least one set of tonsils a week from this pandas doc. I have heard from parents whose kids got worse after tonsillectomy, so very afraid of that. Her immune panels are normal. No strep titers. I didn't take her to the doctor for sick visits for well over 2 years (which interestingly is when the ocd started) b/c I was so sick of all the antibiotics! She was frequently ill with URI's, ear infections, pneumonia 4 times, from 3 months of age. who knows if she had strep during the sick-visit hiatus.


    I have been too afraid to try the normal pandas treatments. My daughter seems fairly happy, so we don't want to make things worse. Steroids was suggested last December and we didn't do it. Have heard of kids doing worse right away, and some get better very briefly then worse, while some do get better. IVIG and PEX also scare me, but also have not been offered by our particular doctor b/c dd7 appears happy.


    I know I've digressed, here, but about 5 weeks ago, her eyeblinking got more forceful and frequent. I had no idea what to do. My husband told me to get a throat culture. I told him there's no way....no fever, no sore throat, headache, stomach-ache. Well, rapid was positive. She was switched to Keflex. Within 4-5 days, tics were back to the normal all through the day unless focusing. Bending then straightening arms, flicking/stiffening fingers, head nod and sway side-to-side, nose scrunch, wide eyes, tapping, mouth stretch/tongue thrust, etc. But she added hopping and is smelling things again. But again, not "nonstop" unless watching TV, but always some sort of movement going on.


    Well, about a week ago, she woke up (usually every morning she comes in to see me, and i can almost convince myself she is cured, because her tics are very low first thing when she gets up)....so she came in and I noticed she was blinking alot. And since that morning, the blinking is NONSTOP!!! Every SINGLE blink is an exaggerated blinking tic. All day....every second almost. And I am freaking out. Took her in for a strep test...negative. Plus, she's still on keflex. She injured herself almost 2 weeks ago...big skin avulsion that they couldn't stitch, and it's still very gooey ( not infected), nasty, healing ,etc....


    Is this something that happens in TS? Overnight severity/frequency increase? Just don't know what to do anymore. You know, when you have a headache, it is a symptom. It could be from a brain tumor, caffeine withdrawal, head injury, stress, aneurism, strep. But you wouldn't treat the headache, the symptom, the same way. Same with tics. Some are from tourette's, some from pandas, some apparently from food allergy, lyme, yeast????? If I hadn't gotten the test by Madeline Cunningham run (which apparently she is going to become a public lab soon) which showed my dd in the high pandas range, with 2 antineuronal antibodies very, very high, I might just say it's Tourette's. I've also had 2 neurologists say it's pandas (or pitand). There are so many rabbit trails to take.......food sensitivity, yeast, lyme, gut stuff, ivig, pex, steroids.....TS in some way is almost simpler, if that makes sense? Actually, even if it was "just TS" I would still be wondering about the rabbit trails. But with pandas, it seems like the treatments are much riskier....steroids, ivig (=blood product), PEX (central line). Those things, according to some specialists, are reserved for "severe cases." So what makes a severe case of pandas, TS, etc. My dd is ticcing almost once a second, but is not complaining about it. Blinking is not her only tic.


    Well, i am all over the map here. Just feeling so helpless, so damned if I do, damned if I don't.....


    Thanks for any input.


  14. Wow....small tonsils being that bad, huh? This ENT actually sprayed in her nose to numb it, then scoped her....through her nose, down her throat, to look at tonsils and see if adenoids had grown back in. I don't know if this means he saw more than what the other docs who said the tonsils are "small" saw. I just don't know anymore. And with NMom's scary post about steroids tonight......

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