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Everything posted by nomoz

  1. Thank you for your responses. I do have a phone consult with Dr. T this evening. The lyme really has thrown me for a loop, as I am getting literally different info from each doc about it. The info on the Cunningham test is helpful, as I was unaware of OCD/tic like behavior alone NOT having elevation in Cam Kinase levels. I will ask Dr. T if he feels any other docs (in the loop) can help further. He mentioned a Dr. Fallon, who is a lyme specialist. I tried and failed to get hold of him. We live in NE Pennsylvania, and I do often wonder if allergies play a significant role, since fall and spring seem to be peak exacerbation times. As I stated previously, it's not I who needs convincing of this illness, but rather, my very skeptical husband. To be on opposing sides in such a stressful time is just too much for this whole family... Thanks for your good wishes and I'll post after our consult with Dr. T. Noelle
  2. Hello, all. I am continuing to see doctors to try and confirm PANDAS in my 8 year old daughter. So far, evidence of strep/mycoplasma/lyme have all been detected and biaxin has successfully alleviated symptoms (while on it). Currently, on no meds, rage symptoms along with strong verbal obsenities and ocd like symptoms are present. My daughter does attend school and does well in that environment, but getting her there is nothing short of an all out struggle. Dr. T (a neurologist in NJ affiliated with NIH) confirmed a lyme test last year, with IGM's 2 out of 3 bands present, and IGG's 3 of 10 present. Recently, we saw a rheumatologist (her ANA titers are always high and speckled) who suggested the lyme test was NOT positive, since the IGG's were negative. The test was considered a positive one, and sent the the PA department of health as such. Does anyone know what is going on here? Also, my daughter tested a 170 on the Cunningham test along with having an antidopamine level of 4000. After studying the graphs of the research done on this test, does anyone know how this compares to Tourettes Syndrome? The rheumatologist suggested Tourettes would increase in severity with strep or other illness. So, does my daughter have Tourettes or PANDAS?? I believe PANDAS, my husband believes Tourettes. Most importantly is the fact that she improved tremendously while on biaxin. Would this be the case in Tourettes alone?? And finally, I'm just going to vent a bit. We recently saw a local therapist who suggested we get a diagnosis before he treated her. According to a very credible neurologist, don't we have one? Well, he wanted us to see a local psychiatrist. Upon first and only appointment, the psychiatrist agreed PANDAS a distinct probable diagnosis, but felt we should stick with our neurologist. Our pediatrician doesn't want to continually run bloodwork b/c of cost and really won't work with the neurologist. I met with another pediatrician who suggested I see an infectious disease doctor who then suggested we see a rheumatologist who then suggested we see someone at NIH. Dr. T is affiliated with Dr. Swedo. We are ALREADY seeing someone affiliated with NIH. I am so frustrated right now with my insurance and these docs, I could scream. And right now my daughter is cursing, biting herself and screaming at her 4 year old sister (who has a fever and is really sick, poor kid.) I JUST NEED SOME HELP. If anyone could answer the above questions, especially regarding the lyme, please advise. Thanks all. Noelle
  3. My daughter has terrible night fears and anxiety - instead of fearing the blanket, she puts her ENTIRE self underneath it, so nothing can get in! Hope things keep getting better for you!
  4. Is this your first time trying steroids? We just did 5 days of prednisone with my daughter a few months back - and it was not pretty - her rages became more apparent. I've heard this can happen the first time on steroids, and I've also heard sometimes it takes some time to see the effect of the steroid. (Don't know if these are TRUE statements, but I've been told...) I hope things get better for your family. Noelle
  5. Hi, Denise. Hope today is a better day for you. My heart goes out to you. The rages you are describing are IDENTICAL to my 8 year old's. Bone-chilling, isn't it? My daughter bites herself, me, her sister.. she pinches (to the point of bruising me), kicks, slams doors, throws phones, pulls towel racks out of walls.. threatens to kill all of us with a knife (never tried that just says it), hates God, you name it.. We have two dogs.. One of them is so scared, I'm afraid he may actually attack her - they really sense something very wrong is going on.. This can last anywhere from 5 minutes to an hour, but usually 15-30 minutes is the course of it. Afterward, she is remorseful and sweet as can be.. and I think genuinely confused... You said IVIG helped the first time???? And you are doing it again?? Did you notice the rage symptoms significantly decrease post IVIG?? I wish you and your family well.. Noelle
  6. Thanks, everyone, for your much valued opinions. My heart goes out to all of you. I'm certainly not saying I wouldn't consider IVIG - my daughter has extreme rage issues when she is symptomatic - but I guess I was just really wondering if anyone saw a REALLY big change post IVIG, and it seems to be the case only some of the time. My daughter tested + for lyme last year, and three months after biaxin, tested -. She also had high mycoplasma levels during this period. She had already had her tonsils out at this time. But I remember well it to be one of her most serious exacerbations. I am just really afraid (maybe we all are) to do the wrong thing, or to cover up symptoms with Tenex, or Zoloft, etc, and miss the autoimmune part.. or to overdose her little body on antibiotics... or to do IVIG only for it to possibly screw up her system more.. I'm just afraid - she's 8.. It's really easy for docs to give advice, but it's much harder as a parent to allow your child to be an experiment. Does that make sense? My God, truly, all I want is for this to just go away. It's caused more stress on my marriage than I ever thought possible - not even sure if it's salvagable at this point - it's caused my 4 year old a world of havoc to witness and sometimes be the victim of, and it's caused a beautiful, bright 8 year old child a very large load to carry. I see a few of you do other meds... I guess maybe Tenex isn't so bad??? I don't know.. seeing my daughter when symptomatic, noticing her very pronounced red under-eye circles and pale countenance, it makes me wonder if lyme didn't do a number, and maybe if IVIG IS a necessary step in her recovery. Can I ask the IVIG parents, did your child test positive for lyme??? Thanks again to all of you!! This forum is truly a blessing. Noelle
  7. My 8 year old daughter currently suffers from PANDAS symptoms. I am extremely hesitant to do anything other than periodic antibiotics and therapy. In doing research regarding IVIG and PEX, I am left to wonder the following - IF these children get better with age (I have an 18 year old niece with PANDAS, and anxiety seems to be her last big symptom - she is doing 100 times better now than in her pre-teen and early teen years), why chance these procedures? And is there anyone who has had 100% effectiveness - a total remission- from either IVIG or PEX? Or do the antibiotics need to continue? And if they do, do you wonder what's really working, the antibiotics or the procedure? My niece tried different meds during her exacerbations,(really to no avail) but never had IVIG or PEX.. and she truly is doing remarkably well and currently on NO meds. If my daughter needed IVIG, I wouldn't hesitate to make it happen for her.. but it just seems a temporary fix to a much more elusive and complicated problem. Thoughts?
  8. I read your post and replies with bone-chilling recognition. I have gone through many similar days, and am noticing that the rage episodes spike higher as my daughter gets older. She is now 8. We have done periods of antibiotics, relieving the rage symptom by about 80-90%. In the midst of an episode, as a Mom, I feel so helpless and vulnerable, watching this demon take over my child and my family. The level of stress and arguing in my household is so high, at times I feel like I just want to disappear!! I know your frustration. You are not alone. We all cry, we all lose it, we all feel like we are on a roller coaster ride, not sure when the next hill is going to have us all holding on for dear life. What's so hard in those moments is to try to create something rational - their behavior is so bizarre, so out of control, how can we turn it around??? I wholeheartedly agree with the parents who say that outdoors and activity truly do help. But it is harder in winter months to find those outdoor activities. My husband works on a farm, and being around those animals does help all of us find peace of mind, if it is only for that time. I am still searching for a behavioral therapist to try to help us with the family dynamic. I don't think anyone "gets it" unless they live it. Period. You can go for an hour or two and walk away from an appointment thinking you are getting somewhere, and then you walk in the door of your home and WHAMMO - something sets your child off and "bye bye rationale". It's almost as if we need a super-nanny for PANDAS!! I'd welcome that!! Good luck, God bless and know that you are not alone. Noelle
  9. Hi.. We just recently had the Cunningham test done as well. Our 8 year old came in at 170, with her anti dopamine levels at 4000 as well. If you look at those levels, you'll see that they are 4 times normal (I believe your results are the same here). This alone is proof that their behavior is related to chemical inbalance in their brain. Your results are positive, as far as I can see. To add to our frustration, once we gave these results to her pediatrician, she dismissed them (along with so much other "proof" we have here - lyme, mycomplasma, strep infections/tonsillectomy...) as research testing. The frustration level we all have as parents as so similar. We KNOW what is going on with our kids. We are fighting an uphill battle. Even the docs in the loop argue about treatment. We are told many different things at different times, and our kids are suffering all the while. I, FOR ONE, AM GETTING PRETTY SICKENED BY ALL OF THIS. And, something tells me I'm not alone in that regard. Good luck to you and your child. Noelle
  10. Hi, everyone. Hope 2011 brings us all much needed relief! My daughter recently did a 5 day trial of steroids (first time trial) and her symptoms of rage seemed to almost worsen. I definitely did not see any signs of improvement. Over the past few months, we did the Cunningham test, resulting in a 170, with anti-dopamine levels at 4 times normal. There are several other indications over the years (along with symptoms peeking around several strep infectins pre-tonsillectomy, mycoplasma and lyme causing a peek in symptoms) to indicate that this is indeed a PANDAS/PITANDS case. We have had success with antibiotics in the past, most especially biaxin, which all but completely decreased rage/OCD symptoms. I understand that a steroid burst indicates the success rate of IVIG, and I am pretty deflated at its failure in my daughter's case. Anyone have similar experiences with steroids??? Thank you. Noelle
  11. I wonder if something like rifampin would help if given pre-dental work to clear surface bacteria. I never noticed my daughter reacting strange after a cleaning, but she did have an episode at the dentist's from anxiety alone!
  12. Now she developed a 102 fever. Poor kid. We did use this drug before, without harsh side effects. But, you never know.. I think, however, with a fever, a reaction to the drug is unlikely. Seems like she just has a bug. (Which may account for the recent rage epidodes!!) However, it makes me wonder what she picked up while on this. It has to be viral, I'm guessing.
  13. Hi, everyone. My 8 year old daughter started Biaxin last week. She's been on this before (for almost 3 months)at the beginning of the year, with a little stomach discomfort, some loose stools, but overall a good tolerance to it. Also, her PANDAS symptoms decreased significantly on it. She started it again just last week since her symptoms have again worstened, along with the re-appearance of the "classic" red circles under her eyes. She seemed to be doing better after a few days - Monday (almost a week after she started) and Tuesday were severely rough mornings. She made it to school, but had really violent panic attacks right before leaving. Today, she is home with diarrhea and vomiting. Overall, she is MUCH calmer - though still a high maintenance sick child. I am wondering if this may be an adverse reaction to the Biaxin, or possibly an infection actually coming out (meaning that it's working). Or could it just be a stomach virus??? Any feedback would be greatly appreciated. I already called the pediatrician. They only want to see her if it worsens. Thanks. Noelle
  14. Hi, everyone. I have a few questions. My daughter's tonsils were taken out two years ago. However, when she is symptomatic (with PANDAS), her stomach continually bothers her (even if she is not on antibiotics) and she complains about her teeth. Also, she complains about her vision (she tested fine in school - not sure if that is a tic). I see that stomach problems surround strep in the gut, which can be hard to detect. My daughter tested positive for lyme this past year, and had mycoplasma right around that time. She has all the signs of a classic PANDAS case, her symptoms ranging from Tourette's like vulgarity to full blown out rages. So, once the tonsils are gone, does a child with this condition stay a host of all kinds of (undetectable)strep infections??? Or could her stomach aches be due to something else? I see that lyme does a number on these children as well. After 3 months on biaxin, her lyme test came back negative, and our local pediatrician sees no point in further testing. It seems as I read here, lyme can hide well, so I'm not convinced it's gone. FYI, her last bloodwork (about 4 to 6 weeks ago)only showed elevation in her ANA titers, which were at 240. Her strep titers were normal. Her eyes have the usual redness underneath - that comes every time her symptoms flare up. She does have allergies, but Allegra does nothing for her symptoms. Lastly, we are awaiting a kit to do the Cunningham test. I held out as long as I could with administering anything to our daughter, so the results can be clear and specific. However, I am confused about this test, too. When I get the blood drawn, will the hospital willingly give the viles to me to send? Or do I have to get them involved in some way? And will her pediatrician understand the results? Thanks, all. Noelle
  15. We do not homeschool our daughter (8), but I can tell you that when things rev up here (like clockwork early October) she begins to miss about 2 school days a week. My husband worries about her developing bad habits, and about the rages controlling the household. I strongly feel that this is an illness, and needs to be addressed as such. When things are in a more normal state, she really likes school and does very well - she is extremely bright (aren't many of these children??). But when it's bad, it's all a blur. This week it's been going downhill. This morning she was screaming - and saying bizarre things like "I feel like I have to bite the left of everything" and her old tic "JESUS CHRIST" is back too. She did not attend school today. I feel for you, and I admire you and all the other parents who are able to homeschool their children. I hope that you know you are not in this alone. Take care. Noelle
  16. My daughter had them (on her face!!) when she was a baby - the doc said let them run their course. She didn't seem uncomfortable with them, and they eventually went away on their own. Interesting, isnt it, how many of these children have had these! There has to be a link there somewhere.
  17. Wow. Everyone here speaks the same language. Now, if we could only get some docs to understand this!! I find it very difficult to know what to do during my daughter's rages (she's 8 and all muscle - she's getting pretty strong!). My husband and I are at odds on everything, from disclipining her to her dx - even though she had problems with strep, mycoplasma and lyme and is a classic PANDAS case, he is a doubting Thomas. I fear this may very well end our marriage. But I will continue to fight this fight. My husband sees her as more controlling and spoiled, since transitions, and "no" and school mornings often trigger her rages. I try (and fail) to convince him that this is indeed part of the illness. He wants to try Tenex (I have it here but am very resistant to the idea) and and feels nothing else will work, even though Biaxin has worked in the past. This wreaks havoc on a marriage, no doubt. (Apologies.. I'm venting here!!) It's so hard to discipline these kids! I agree with the statement to treat it like a seizure. Truly, these kids don't want to behave this way - but it certainly is trying, to say the least, on everyone else in the home. However, it seems to create a consequence also creates blame, and, let's face it, it's not their fault. However, no one should ever be put in harm's way, so re-direction, whenever possible, seems to be the best solution, as far as I see it. I think we all lose our patience now and again, though. We're not perfect - we're all human. So, we are all in the same boat. I only wish we saw a shoreline!! This morning, it's pretty cold here in PA, yet I couldn't get my daughter to put socks on for school. She has a summer dress on with crocs, and I decided to let her go, since I'm trying to pick and choose battles with her. However, it still was a 1 1/2 hour struggle just to get her dressed and out the door. And she left kicking and screaming. Once in school, she is actually shy, bashful, quiet, and a great student. No teacher would believe me unless I showed them a video that this child behaved how she behaves at home!! The only thing the school is aware of is her many absences - and the fact that she has those red circles under her eyes (starting in Oct like clockwork every year). Otherwise, she is very well behaved in school. I'm looking into the Cunningham test, and trying to stay away from antibiotics (Biaxin worked wonders for her) until I'm able to get it done. However, I don't know if we'll make it without treatment much longer!! Best wishes to you and everyone else going through this. Noelle
  18. Thanks to everyone. My best wishes to you as well with school. My daughter is actually so well behaved in school, it's almost unbelievable. Yesterday, after school, we went in the pool along with her little sister. She did everything she possibly could to annoy me, until I got really angry with her. I swear, she WANTS to get me upset. It's such a bizarre illness. My husband (who has a medical background in his education) is now in complete discord with me about PANDAS, saying there is no way a bacteria is causing this. He believes it's Tourette's or ADHD. WE HAVE treated her with many antibiotics, and with success, most especially Biaxin. However, most definitely, there are high risks to long term antibiotic use. Without a doubt, my daughter meets the criteria for PANDAS, without a doubt. But I'm exhausted from trying to prove it to the person closest to me! He thinks I'm ignoring the problem. To reiterate something I talked about early on, my niece (same symptoms) lived here while her tonsils were severely infected, and my daughter's symptoms began about 6 months into my niece staying here. Both have since had their tonsils out, both have had a bout with mycoplasm with symptom flare ups, and both are more prone than the average person to illness. My daughter's immune system, after bloodwork, seems a bit more compromised than my niece's, and she also did test + for Lyme, and my niece did not. I find the symptom similarities too noticeable to ignore - we did take both to Dr. T for an evaluation. I loved him, but he has gone missing on us for months now. I need a solid dependable doctor to take hold of this situation, even if it means a different approach to treatment. I HATE that more doctors aren't educated about this illness. It's obvious from the many cases out there that it is, in fact, VERY real and very active in so many children. Thanks for the words of encouragement. Noelle
  19. Hello, all. My daughter starts 3rd grade tomorrow. To fill everyone in (I haven't posted in a bit) she had strep, (tonsils out) mycoplasma (last winter - still high antibodies) and tested for Lyme in February. Biaxin worked wonders for her, but, as most of you know, it is not a long term solution. However, this summer, without much structure or stress, and with NO antibiotics or other meds, she did GREAT - at about 85-90% - some days, there were rage issues, but, overall, her behavior was really noticably good. Of course, with the approach of school, her rages increased over the past few weeks, and some of her tactile issues returned. Today, though, today, I am brought back into the realities of this whole thing. She was not even paying attention to the clothes I picked out for her while we were shopping - her ADHD like symptoms returned - she kept saying "what the ######!" in the store, became increasingly agitated the longer we were there - you know how it goes. Now, tonite, as I tried to pick out clothes with her, nothing fits, or she hates the tags, or the seams in the jumper are picky, and she is inconsolable. Her father is trying now to put her to bed. I honestly dread tomorrow. I really do. I know once she is there and the stress dissipates, she will be great there (how this is possible I still don't know) but then I'll be the target once she is home. So the cycle starts again. I am left to wonder - how much does stress affect these kids? Is there a surge of negative chemical warfare happening when stress comes into play? How could a child who did so well for a few months be roped right back into this behavior? Her Lyme test, after being on Biaxin a few months, came back negative - does this mean it is or am I missing something? I NEVER seem to get anywhere with the docs - I HATE that there isn't a more specific definitive way to treat this thing. I'm still at odds with my husband over the use of Tenex. Right now, I honestly don't know what to do next. She's good alot of the time, with the surge of rages or hyperactivity happening sporadically - does that warrant Tenex? Have any of you had any luck with it? Does it even make sense to consider? Wishing you all the best with the start of the school year, and hoping and praying for all our kids!! Noelle
  20. I am so sorry you are going through this, and I regret to say that we are going through something very similar.. My daughter did wonderfully on Biaxin, and we cannot use it long-term, due to its high potency. The verbal/physical abuse is so hard to take. Not to be negative, but, sometimes it seems that no matter what advice you get, the crisis situations just turn the whole family's life upside down. My 3 year old daughter is usually witness to these events, and sometimes she is the victim of them. To say ignore it - I don't know - when it becomes physical or when the verbal abuse just gets to you, how is it ok to ignore? I agree with everyone that our children are trapped inside this illness, and we have to make the separation. But, where do we draw the line? We are currently debating the use of tenex as a possible interim solution. Dr. T has been our consult doc, and he's gone MIA on us, so I truly truly feel like we're back to square one. I, too, have recently begun reading "The Explosive Child" hoping for some other methods of avoidance or redirection. I wish I had more advice for you.. What I can say is that my heart really goes out to you, and know, in your frustration and your search for answers, that you are not alone.
  21. Sorry, guys. I just saw the other post questioning mycop and rage! Oops... BUT, if anyone has any answers about the lyme test now being neg (could antibiotics really abolish it in 3-4 months time?? Was it a false +??) that would be greatly appreciated!! Noelle
  22. I would not rule out your hunch that mycoplasma weighs in heavy here. My daughter, 7, tested positive for mycoplasma in January, and her Iggs remain high, though her Igms have returned to normal. She's had problems with strep in the past, but mycoplasma is her only current red flag. I've googled it a bit, and seen that absolutely psychosis is linked (though rarely) with this illness. So keep asking questions. I am. I think there is a rage link there. Not that rage HAS to come from mycoplasma - (it can be triggered by strep or others) but I think it's a big player.
  23. Hello, all. The bloodwork is back on my 7 year old daughter, and the Western Blot now finds only lyme antibodies in band 41, which I hear is common in PANDAS cases. Otherwise, she now tests negative. Could biaxin actually have treated this since January??? Though relieved, I am still going to look into it further with an immunologist to make sure we didn't miss anything. I know this test can be inconclusive.. Her myco antibodies remain at a 5 (should be below .9).. Though she doesn't show active infection (IGM's in the 600's) I remain convinced that mycoplasma is a HUGE culprit here. How many others have had problems with mycoplasma and rage episodes?? And has biaxin been the drug of choice for all of you? I think this ugly illness is behind alot - if I'm not mistaken, it makes the immune system susceptible to other infections (even in a healthy immune system).. What is it doing to these kids??? Noelle
  24. Yes, we have seen Dr. T twice and had a few phone consults with him. I think he's wonderful and I only wish he were easier to get hold of. I will ask about that test, thanks. I believe, as I have stated, without hesitation, that the co-infections are creating the rages. She raged before her tick bite, though (we may have missed a bite - but I don't think...) - 3 months before she had her tonsils out was a pretty rough time here - I can remember pretty far back, and I'd say there was a turning point post MMR shot (#2). She had a rash, fever, and was extremely irritable from it. Of course, the ped at the time said.. just give her Motrin, she'll be fine. IMHO, that was the turning point for her immune system. Also, I wonder what role mycoplasm has in all of this. It seems this is another difficult infection to get rid of. I have a niece with similar rages (she's 18 now) whose myco levels are ridiculously high (somewhere around 3000). She is currently on antibiotics and does not show overt signs of being sick - and I don't know if there are definitive treatments for "chronic" mycoplasm. My hunch is that is a big factor here. Thanks! Noelle
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