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eljomom

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Posts posted by eljomom

  1. No, I'm in Virginia. I'm with you all....simple and easy would be nice.

     

    First of all, I want to offer you a cyber hug - I read your earlier posts on the pandas forum. I didn't have a chance to read the above responses - but was wondering if your insurance will cover any of it. I'm fortunate, where our insurance covers most of the Igenex cost. If not, you might want to consider putting the expense towards an llmd visit instead. Are you close to Dr. J? If I remember correctly your child was + (or IND) on band 83-93. Dr. J feels band 83 is HIGHLY suggestive of Bb. Before our appt. with Dr. J I ran the Igenex lyme western blot test with our ped (positive) and when I was still skeptical - ran the band 31 epitope (negative). When we finally went to see Dr. J, he said it was a waste of money to run the epitope because band 83-93 is very suggestive of lyme. He went on to find Bartonella & Rickettsia. But it comes down to your decision.

     

    I would LOVE to see Dr. J. However, He is way to far for family of 5 to travel to get better multiple times a year.

     

    But the best LLMD is always worth it in the end.

     

    I personally went to the only 2 that are within a 2 state radius for me and I live in texas .

     

    There is no one here.

     

    But I wanted to see both to decide who was the best to treat my kids. They have already been through so much. I did not want to take them to some wierdo place in the middle of No where America. I was happy I did. And zeroed in on the one that works best for our family. I chose not to go the route of taking 20 different pills a day for my kids. We try to keep things simple antibiotics, probiotics, eat healthy and clean.

    So far it has worked.

    I'm sorry - my response was to eljomom. I think she lives near CT. I could be wrong -- terrible memory :D .

  2. no...never even talked about ruling it out. I did mention my father-in-law. Wonder what symptoms are.

     

    wickedmania....Nope. Curious why you ask? I have wondered that myself, especially since my father-in-law had it as a child, and died very young of a second heart attack....

     

    Not to belabor this whole steroids thing, but has anyone done steroids for a child (especially one with many tics in addition to some ocd), but after about 3 years of symptoms? Is it too late? Are steroids best only when caught in exacerbation early? From those who have been posting about the success of steroids, it seems like those who get them right away, pretty quickly after exacerbation, have success. Wondering if the ones who DON'T have success are the ones who waited years to get treatment? WE went about 2 years with some germ ocd---thinging dd was just a quirky pain in the patooty, to aabout 3 tics shortly after pneumonia (they weren't constant, and again, didn't alarm us, since many kids get transient tics....and NEVER knew about linking to illness), then the big explosion after the fever...head to toe tics, separation anxiety, more ocd, etc....but it has not stopped. It's been 14 months since then. So I do wonder if steroids would even help now?

     

    I asked because you said symptoms developed after a fever. Did he at the same time have any joint/bone pain? Our son has had a similar pattern, been diagnosed with PANDAS, but the possibilty of rheumatic fever has been mentioned and he is going to see a cardiologist just to check out his heart.

    Did a doctor rule out rheumatic fever?

  3. I'm on forum overload today, if you haven't noticed. So dd7 had a positive rapid about 4-5 weeks ago. Pandas doc and ped. said no need to test titers...they aren't really helpful, etc. ENT ran them anyway, which was about 3 weeks after positive rapid. Her ASO was "6." When we first tested her ASO back last fall, her ASO was....."6." EXACT same number, which I find just a little weird.

     

    DD has had pneumonia 4 times. The last time was in March 2010. She had had a cough and fever, seemed to get a little better (well, fever did), but then tanked again about a week later, with another high fever with the cough. Records say "myco p ?" I will have to look back and see if we x-rayed for that one. Nonetheless, she took abx and got better really quick. Maybe it wasn't mcyo p, but strep instead with the second fever? That's irrelevant. And maybe the other pneumonia's were viral (but I remember one of the docs saying the way the x-ray looked it was likely bacterial) or from something other than strep. Tested myco p IgG and IgM in November, and it was negative.

     

    To boot, dd's immune panel was "normal." How can this be? You don't mount an antibody response to strep (thus no titers)....doesn't this sound like some sort of immune issue in and of itself?

     

    Just curious...again...

  4. we tested her myco p igg and igm (dr. t ordered it after a phone consult). both were negative. when i looked back at her records and saw all the pneumonia, then saw people posting about myco p... i thought we'd figured it out.

     

    eljomom- I have read some of your posts, and it is possible that I may have missed some pieces of information. I noticed in one of them you talked about your daughter having recurrent pneumonia when she was younger. My daughter is also not a "typical" PANDAS presenter although her brother is. She exacerbated last november after recieving the flu mist. We did strep titers which were only slightly elevated. My daughter did not respond to Zith either. Her immune tests were normal. Wasn't till Dr. M tested her for Myco P. that we figured it out. Her IgG and IgM for Myco p was very high. Even though many kids with myco p will respond to zith, my daughter did not have much response. Wasn't till she was switched to Biaxin that we started to see changes.

     

    Funny thing was that I had even talked to her pediatrician about all the pneumonia and asked if this was normal and she blew me off. Now I realize that she was harboring systemic myco p which explains alot of the behavior she had at that age as well. It wasn't until after the flu mist that she got completely out of control. She has been on antibiotics for about 4 months and had 2 IVIG's and finally we are seeing recovery.

     

    You may have already tested for this. If so, sorry to make you read this whole post. Just wanted you to know that even though lots of kids do great on Zith (my son as well), there are a few that will be non-responders. Most doctors love Zith because of its immune modulating effects, but if it isn't working it isn't working. I was shocked at the difference in my daughter when we switched.

     

    Anyway, Just thought I would add in my 2 cents. Best of luck....

     

    Dedee

  5. Just posted in Lyme forum, but thought since there are more people hanging out here who have pandas/lyme, I would post here too. Curious what Dr. B orders, and any other docs who are working on this.

     

    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. So I want to maybe attach a note, as I'm guessing dr. won't remember what we talked about ordering (i sure don't), and maybe I can ask for certain tests.

     

    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. Now pandas doc says we should test co-infections, etc...

     

    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 (?)

     

    Thanks.

  6. 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 (?)

     

    Thanks.

  7. thanks lynn...I trust tried-and-true anecdotal just fine!! Has anything helped him?

     

    FWIW--DS had pandas symptoms on and off since age 6 and he is 15 now. We tried a steroid burst two years ago. Bad news is that he didn't get any relief, possibly because he hadn't been on antibiotics first and lab tests indicated later that he had had an active infection at the time when he was prescibed the steroids. However, the good news is that he has always been an active ticcer and there was absolutely no increase in tic activity. I know this is anecdotal and you would rather have real scientific info, but at least here is one case of ticcing not increasing from steroids.

  8. P.Mom---you are NOT hounding me. I appreciate your insight....always have!

    See, with my dd, I don't think the germ ocd ever went away. Then again, she was almost CONSTANTLY SICK from 3 years of age (interesting that her immune panel was normal....has had pneumonia 4 times too!). URI/ear infection/cough...pretty much monthly for years. So maybe never a shot to "heal" or "remit" once it started (the ocd). So when you say 2 years since onset, you mean onset, then remission of symptoms until explosion, right? So when it hit 2 years later, you got right on it, right? I'm talking NO REMITTANCE in over 3 years.

     

    Did you go see Dr. K? I thought I knew who your pandas doc was......

     

     

    I swear this is my last post because I feel like I am hounding you!

     

    I remember asking Dr. K this same question....because my son had had PANDAS for 2 years before we found out what it was. First onset occured after strep when he was 3...he developed "quirky" germ OCD like you mentioned, and we too, let it fly right over our heads...just thought it was a phase. Everything resolved (he did get antibiotics for the strep...but we never put it together)....anyway, everything resolved and we never thought a thing of it again until 2 years later when he got strep and the **** hit the fan.....BAD! He did not get his first steroid taper until a year AFTER the "bad one", he was doing MUCH better at the time, but, he still showed improvement. The next burst was another year later when he started ramping up with tics from Pertussis...we quickly nipped that in the bud with a 5 day course.

     

    So, as Dr. k says and from what I experienced..with A PANDAS child..if they are symptomatic...you still SHOULD see results regardless of duration of illness.

     

    Okay....BYE BYE!!!! :lol:

  9. wickedmania....Nope. Curious why you ask? I have wondered that myself, especially since my father-in-law had it as a child, and died very young of a second heart attack....

     

    Not to belabor this whole steroids thing, but has anyone done steroids for a child (especially one with many tics in addition to some ocd), but after about 3 years of symptoms? Is it too late? Are steroids best only when caught in exacerbation early? From those who have been posting about the success of steroids, it seems like those who get them right away, pretty quickly after exacerbation, have success. Wondering if the ones who DON'T have success are the ones who waited years to get treatment? WE went about 2 years with some germ ocd---thinging dd was just a quirky pain in the patooty, to aabout 3 tics shortly after pneumonia (they weren't constant, and again, didn't alarm us, since many kids get transient tics....and NEVER knew about linking to illness), then the big explosion after the fever...head to toe tics, separation anxiety, more ocd, etc....but it has not stopped. It's been 14 months since then. So I do wonder if steroids would even help now?

     

     

    Did a doctor rule out rheumatic fever?

  10. P.Mom---thanks. Had your ticcers been ticcing for long when you tried the steroids? It does make me feel better hearing from a big ticcer who had steroids work. My brother has Tourette's (had chronic strep as a kid!!!), and father in law had rheumatic fever (died of second heart attack at 44), so something's predisposing my dd (well, a couple of my other kids too!). Who knows, my brother could have been pandas. But my mom swears his Tourette's was not like my dd's. The dramatic onset, and so many tics, etc. But I think that's why I do have TS on the back burner. He also has ocd.

     

    Tonsils out...I agree totally ---NOT off-the-wall, unless the child has no known strep infections (she wanted it done before dd's first strep we know of, a month ago ...and she didn't raise titers with it), not enlarged tonsils, etc. My ped. said NO ENT is going to pull tonsils in her situation unless they are working with a pandas doc, etc..

     

    Can you tell me about short course of steroids not being less invasive than IVIG?

  11. Not to belabor this whole steroids thing, but has anyone done steroids for a child (especially one with many tics in addition to some ocd), but after about 3 years of symptoms? Is it too late? Are steroids best only when caught in exacerbation early? From those who have been posting about the success of steroids, it seems like those who get them right away, pretty quickly after exacerbation, have success. Wondering if the ones who DON'T have success are the ones who waited years to get treatment? WE went about 2 years with some germ ocd---thinging dd was just a quirky pain in the patooty, to aabout 3 tics shortly after pneumonia (they weren't constant, and again, didn't alarm us, since many kids get transient tics....and NEVER knew about linking to illness), then the big explosion after the fever...head to toe tics, separation anxiety, more ocd, etc....but it has not stopped. It's been 14 months since then. So I do wonder if steroids would even help now?

  12. All well-taken....I know from those posting to my topic, that your hearts are all in the right place. I can take it, and I appreciate it. Honestly, it's like a family in some ways here, and sometimes we don't see the forest through the trees until someone we car about points it out to us. I have thought of most of the things you all said....doing nothing gets us nowhere, etc....

     

    We just DON'T have clear cut strep to be our "known trigger." My dd also tics mostly, and I'm not sure if kayanne, P.Mom or dcmom....if your kids tic ALOT?? But if I were only dealing with OCD I would have tried steroids by now. Dr. L only brought them up at the one appointment, and after I asked about Lyme, it hasn't come up since. She reads the notes. She knows what we have done/not done. She isn't shy about suggesting some off-the-wall treatment (like pulling tonsils of a kid with no known strep, no titers, small tonsils, etc.). In her mind, during the 2 minutes she sees my dd at appointments (we don't bring her back for the rehashing of it all), dd sits still, hardly speaking, moving, breathing, probably fearing the needle or swab coming out at any time. Dr. L sees that and says "she seems happy." So I think that is a HUGE part in whether a child is offered certain treatments.

     

    I truly think if steroids were the "preferred treatment" for pandas, NIH would be doing a research trial on just that....steroid tapers for pandas. It would be a heck of a lot cheaper and quicker. but they are not...they are trialing IVIG. And part of me thinks they are trialing IVIG b/c it is "less invasive" (ie., people are more likely to do something like IVIG,where they might go through the procedure and only get placebo, than PEX), and because it is "cheaper."

     

    But back to steroids and tics....steroids increase dopamine, dopamine increases tics. That is a known fact. Even the ENT at Georgetown we saw, when he mentioned that during surgery they give a bolus of steroid, and I mentioned my concern...he said "You know what, that is a really good point. I really need to rethink that for my pandas patients who tic. In fact, it's even been shown that steroids can cause psychosis in young children."

     

    I do appreciate everyone's input here, and am open to hearing any more from anyone who would like to send it.

  13. Thanks dcmom. Not harsh at all, and nothing you have said surprises me. I am tired of being the medical director. That's why I'm paying thousands of dollars to the pandas specialist. THAT is who is supposed to be directing . WE HAVE done everything she suggested. The augmentin for a month. The low dose zithromax. Ignore the tics. Go to infectious disease. No, we have not pulled tonsils. No we didn't do the steroid taper, because when she mentioned it, I asked if we should test for lyme first, and she said "yes." I'm SICK if having to think this hard. Just because antibiotics doesn't work, to me, that does NOT mean it's NOT pandas. If antibiotics worked for all pandas kids, then surely there would not be this forum. We would all be sailing away blissfully with our antibiotics. Nope, no titers. Nope, no cultured strep. Nope, didn't take her to the doctor for sick visits for over 2 years, during which time the germ ocd started, which I attributed to an annoying, quirky phase from a difficult, strong-willed child. The baby of 4. Who survives days of 104 fevers unscathed. Or so I thought. So sudden? Well, if your child used to eat anything given to them, and then one day the won't eat anything that anyone has touched or breathed near, is that sudden? If your child didn't have tics, then got 3 tics that could also have been attributed to "quirky stuff"---smelling fingers, rubbing hair and scrunching nose, is that sudden? If your child had a high fever for a day, then within a week, developed over a dozen tics, separation anxiety, over the course of a week or two, is that sudden enough? Nope, no titers. Is pandas just strep? Not from what I've read.

     

    I'm sorry if I sound harsh....I truly appreciate everyone's efforts to help. I am just not the type that thinks it's just no big deal to put a kid on steroids for a month. Not everyone has had the success you have had with steroids, in fact, from what I have read here, you are the minority. Maybe it's because this forum is filled with people who are really NOT having immediate success with treatment. I don't know. My husband sees her as happy, so he fight against any type of treatment anyways. He (and I) don't want to lose that....her happiness, by trying something that may make her worse. She is pretty happy now, but when the teasing starts, when she gets older, it won't be cute anymore.

  14. After hearing SO MANY people post that their child did wonderfully with steroid burst or taper, then shortly thereafter relapsed, and often with WORSE symptoms than at start point, I wonder if maybe there is a "rebound effect" taking place? Inflammation is temporarily forced with steroids, then when they are stopped, the body works hard again, causing inflammation to return, even worse? Anyone ever thought of this or asked a doctor?

  15. Thanks PowWow. I agree....I have gotten some amazingly useful info. here, but I have also heard the horror stories, negative responses to steroids, ivig, etc., rabbit trails, and I sometimes wonder where we'd be if I hadn't heard that stuff, and had just bitten the bullet and done steroids almost a year ago. Maybe better. Maybe worse. Who knows. I guess for me, we are not a "clear cut" case, so I do have doubts about doing many of the big interventions. At the same time, doing nothing leaves us with strong Tourette's and some ocd. I suppose you are right about trusting the doc. I guess I truly have lost trust with our pandas doc. I don't believe there is any sort of plan, just stuff being thrown at us, and stuff that is 180 degrees different from another visit. I just truly don't know who I will trust. I pretty much know if I go see dr. K, we are going to be told we need ivig. period. dr. b will run a zillion tests, maybe try some abx combos, then will rx repeated ivig. we've been told not to pay attention to the tics as symptoms....they are the "last to go." Well, they are our MAIN symptoms. So in some way I feel like I've had my pandas holiday. We did low, non-treatment dose zithromax for 8 months. No change. I tried to convince myself that tics might go later. I have been sent to Inf. Disease. ENT for NO strep, and small tonsils. It is just frustrating and makes no sense. Trying to trust my doctor when the things we are told is tough. "Pandas kids don't have issues with yeast." "100 mg zith. should be enough." "Let go of the lyme issue......(another visit)....oh, she had some positive bands for lyme...why didn't we retest?" MUST remove tonsils. Hey, helllooooooooo....isn't it pretty common knowledge now that PANS is not just caused by strep.

     

    I am sorry to badmouth our doctor. I know this doctor has done amazing things for some people here, and that is awesome. We don't fit neatly in a "exacerbation from strep.....remission from abx.....exacerbation from strep....remission" package, so we're not getting help.

     

    So here is that tone I was talking about, yet I can't help myself right now. I'm just being mentally pounded that if we do nothing, we are left with tourette's and ocd. But we are not being offered anything but useless antibiotics for treatment. Once offered steroids, but declined. Have heard too many multiple times that steroids are just a VERY temporary fix, with symptoms coming back, sometimes worse. Wondering if it's a "rebound effect."

  16. Not that my child is "debilitated" enough to be offered PEX, but just wondering, if PEX filters out the autoantibodies, isn't it filtering out ALL antibodies? What kind of immune system does that leave your child with? ARe all the antibodies they have to previous illnesses (the good ones) and immunizations filtered out too?

  17. I want to apologize to the group, especially to people who are posting in order to find relief, compassion, hope, etc. I feel convicted that I need to apologize for the tone of my recent posts/replies to posts. I am in a bad place right now. A feeling of damned if I do, damned if I don't. A feeling of being alone in a battle field. Marriage is tanking because of pandas. Child is ticcing NONSTOP and it is breaking my heart to watch helplessly, as our only pandas doc has not helped us really.

     

    But I digress. I truly do apologize for just being plain old negative, grumpy, maybe even rude. I probably should have just kept my mouth shut and NOT responded at times. Please don't in any way take it personally. I would not be functioning today if I hadn't found this group.

     

    Thanks, and blessings,

    Wendy

  18. Well, I suppose we have TS too....must be both?? Tics have not remitted even for a day, or an hour, in over 17 months I believe. Did the steroids help at all? I've heard mixed things about steroids with tics.

    Boy, your dad's an immunologist...how awesome!

     

    topaz....i am curious about being diagnosed with TS AND Pandas. I would say my dd has tourette's and some ocd, based on symptoms....she has many tics and some ocd, hyper, etc. But the onset was likely after infections (many since a baby, and many untreated for years)....ocd age 4.5ish, for a couple years, then explosion of tics after a fever last (2010) summer. She has not stopped ticcing since. But I am told it's pandas. So if it's TS, you basically treat with tenex, clonidine, etc., but if it's pandas, you need to knock out infection or calm autoimmune stuff. Did Dr. B diagnose both of those?

     

     

     

    Well, he was diagnosed with TS after having tics for over a year, that started in first grade. The problem is, I don't remember him having strep anytime right before then. Anyway, I brought him to a neurologist who diagnosed with the TS, but it was fairly mild at that point and would come and go. Pandas will still very new, so my Pediatrician did suggest ABX, but he was only on them for about 10 days. It did not do anything to help. My father is an immunologist and a friend of his told him about the Pandas. That is when I found Dr. B. We are lucky to live only about 1/2 hour away and after my son had blood work done, the strep titers were through the roof. The neurologist still calls it TS and Dr. B says it is not TS. His tics never go away completely - so I am not sure what to think. It is kind of a guessing game as far as I am concerned. We did try Tenex, but it did not work, so we decided not to go the route of medication for right now and see what happens. He is still on ABX, and we are going to see Dr. B in a couple weeks - so hopefully he can give us some more suggestions.

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