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KaraM

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Everything posted by KaraM

  1. DH is a MA Rep....will forward this on for sure!!! Hopefully he can call in some chits...
  2. So we went to get a throat culture and had an appointment with one of the docs in the practice. I had a bad feeling when I heard who we were going to see, but my main priority was to get the culture done, and that was achieved. Of course he said she would not get strep while on the antibiotics. Armed with knowledge and confidence I've gained from so many of you here, I said, "my understanding is that is controversial." And he said, yes, it is, but he's "sure" you can't. I mentioned that our specialist said that after being treated with Zithromax for so long, it may no longer be effective and he mumbled agreement that there could be some resistance. (But I thought he was sure??? ) More than anything, the closed minded attitude just gets to me. As whacked as it sounds , it's enough to make me hope for a positive culture, just to prove the point!!! (As you can see, my Emoticons are working again!)
  3. Thanks Everyone, I am happy to report that she is not exhibiting any PANDAS symptoms. OCD is non-existent at this point. The only thing we seem to be dealing with anymore is academic stuff. And we will be seeing a developmental optomotorist tomorrow to test for convergence insufficiency. I'm going a bit off topic here..but at our visit a couple of weeks ago, Dr. J. said, depending on the results from her IgeneX testing, she may be able to go off abx altogether. (Insert smiley not working...) :-))) Dr. J's office just called me. The person I spoke with said something to the effect that Zithromax, if used for Lyme, will not be effective for strep. (At least that's how I understood it...I didn't ask why). She said if she's positive, she will need to go on another antibiotic. She told me to have her cultured (3day) and have the results faxed to them. They also read me her results from our last visit (Jan 11). Her strep titers have been running in the normal range for at least two years. And they've all declined since the last measure done at the end of the summer. I'll keep you posted. Thanks again for your responses. Kara
  4. Dr. Bouboulis also believes it is possible in adults and treats some in his practice. He's an allergist/immunologist. He does accept insurance (at least ours and we are from out of state). He is in Darien or Stamford CT.
  5. Hi, My dd11 has been treated for PANDAS/Lyme/Bartonella for 2 1/2 years. She has been on her current combo cocktail of daily Zithromax/Bactrim as well as Tindamax on weekends for over a year. She is hardly ever physically ill. She's been complaining of stomach ache/nausea and a feeling in her throat like she's going to throw up for close to a week now. Today, she said her throat is also starting to get sore. Called the pediatrician and spoke with the nurse. She said these are all strep symptoms and said I could bring her in for a swab. I know it's possible to get strep while on antibiotics. But what are the chances when she is on three??? I'm not so sure I want to bring her in to the sick visit office for a swab. However, if someone here says that their child has tested positive for strep while on such a combo, I will. IF it is strep, would switching abx address this? She's allergic to amox, so can't take this or Augmentin. I have a call in to her Lyme doc to discuss as well, but would still appreciate hearing anyone's experiences here. Thanks, Kara
  6. I don't think anyone did. How was it? Kara, anyone from your group going?
  7. Ok...had a chance to look back. Unfortunately, I did not take any notes...apparently I just listened. But the name of the presenter was Jenny C. Yip, Psy. C. She is the Executive Director of the Renewed Freedom Center for Rapid Anxiety Relief. Here is a link to her profile and their website. Perhaps she would be willing to share some other examples... http://www.renewedfr...r.com/about/#a1 Kara
  8. I wish I could go, but I can't. I did, however, send it out to our support group email list. Kara
  9. Sorry to take so long to get to this...I still would have to look back at my notes to get more details. The scenario she mentioned was just what you said, but she did it in stages if I remember correctly. First, she said "imagine your child has been missing for 12 hours and you were expected to do your work as if nothing was wrong. Then, after she got us to visualize that and feel it this best we could, she said, now imagine your child has been missing for a few days. Your house is filled with police officers, news casters are outside. You are frantic with worry. Then, someone asks you where the milk is. (Aaaahhhhhhhhhhh.....It's in the f######g refridgerator!!!!!!! Where the f### do you think it is! What a stupid F#######g question!) (I don't necessarily think that was very "eloquent," but you get the point... ) She compared this to a child in school who has OCD and who is so worried and scared about whatever they are obsessing about and about performing their compulsion. Then, in the middle of all this the teacher asks them to find something or do something. This might help explain why a child would respond to a teachers request in an angry or frustrated way. She really tried to get us to visualize this situation and gave it time to sink in. Of course the room was full of parents, so you may have to modify for teachers that aren't parents and get them to just think about someone they truly love and care for and who is also somewhat vulnerable or dependent on them.
  10. This past Sunday was what I consider to be the day we started this journey three years ago...although I know now it was truly months before. My daughter, 7 at the time, had been exhibiting OCD symptoms for a few months, mostly related to germ contamination fears. Initially, during the late summer and early fall months, the symptoms were relatively mild: mostly questioning about the Swine flu and whether she was going to get it or fussiness about clothing. Over the next few months, the questioning became more and more frequent and other symptoms, such as extensive hand washing started to appear. It was on this day three years ago that she truly stopped being able to function normally. Her hands had become raw from washing them so much. Every day had become a battle to get dressed. But on this particular day she was simply not able to do it. Every item was contaminated. We had thought in the weeks before that she might just be manipulating us. But we knew that was not the case. It was a gorgeous day after a huge snow storm and all her friends were in our yard playing and waiting for her to come out. She wanted to go out so badly, but just could not get dressed. That's when I hit the computer and learned about OCD. We brought her to the pediatrician the next day. He agreed it was OCD, prescribed Celexa and referred us to a therapist. When we called the therapist, she mentioned PANDAS and suggested we test our dd for strep. The doctor agreed, but the test was negative. At that point both the therapist and doctor said “no PANDAS.” Over the next few months, even with therapy, our dd continued to decline. Her germ contamination fear OCD was pretty extreme, preventing her from getting dressed, walking or driving on the streets leading to our house, eating food from the refrigerator or certain cabinets, sleeping in her (or any other) bed, using bathrooms other than one in our house, eating lunch at school (when she would make it there), going to recess…the list goes on and on. In addition to the OCD she also had fight or flight rages. She even ran outside when it was below freezing with no shoes or coat on and hid from me in the snow covered yard. She had emotional lability and would go from crying for an hour, saying she wished she wasn't alive to skiipping down the street, happy as a clam shortly after. She had ADHD like behaviors that were not there when she was toddler. Her school performance declined. As I searched for knowledge and support, I eventually discovered the OCD and Parenting Yahoo support group where I electronically met LLM and Suzan, as well as a few others who encouraged me to continue looking into PANDAS. They were both pretty persistent, especially after I learned of a boy in my dd's class who was also exhibiting PANDAS symptoms tested positive. They convinced me to get her blood tested and participate in the Cunningham test. The blood tests were positive. Her CAm Kinase was in the high PANDAS range at 189. Since that point, her pediatrician put her on Zithromax and referred us to a specialist at Children's Boston. Fortunately, we followed the advice of people on this board (like Nancy I think) to skip over Dr. F and go to Dr. B. or one of the other big 5. She improved rapidly on the Zithromax so that by the time we saw Dr. B in June she was about 80% back to normal. He upped her dose and she went another 10% within a month. Unfortunately, six months later, she took a nose dive. Dr. B. was convinced it was due to strep exposure. Her brother was constantly getting sick. And Dr. B's suspicions about him carrying strep were correct. But after we got that under control and tried a steroid burst on my dd, she didn't improve. Dr. B. then tested for more infections and discovered Bartonella in both her and my son. He then put her her back on Zithro, added Bactrim for the Bartonella and referred us to Dr. J. for further evaluation. We've been seeing Dr. J since then and treating them both for Bartonella and Lyme. He continued the Zithromax and Bactrim combo and last fall, after confirming Lyme, added Tindamax as a cyst buster. It has been a long, long road with two steps forward, one step back the whole way. But really, the last year and a half was nothing compared to the first year and a half. Other than herxing after giving Tindamax on weekend, they are both doing amazingly well. I now describe my dd as 100%, 95% of the time. The girl who was once afraid to go the bathroom cleaned my toilets for me on Thanksgiving! Her OCD is pretty much non-existent. She no longer rages or has depressive episodes. She’s doing better in school (although she still has issues with reading that may or may not be related). The herxing is primarily either age regression or hyperactivity. And it's usually pretty short lived at this point, lasting an hour or so here and there over a couple day period. She is engaged, trying new things and getting involved in activities. She’s funny, fun loving, and happy. She’s awesome! My son, who was never officially diagnosed with PANDAS or PANS, but whom I suspect is PANS, is also doing much better. He never had OCD. He may have had a throat clearing tic, but we’re not sure. His only psych issues were emotional lability and perhaps age regression. He just got sick a lot with sore throats and stomach aches. He was constantly at the nurse’s office or staying home from school not feeling well. This year, he has not missed one day and has visited the nurse only a few times with a stomach ache. No sore throats!! I received so much support and advice from the wonderful people on this board. My eternal thanks goes out to LLM, Suzan, NancyD, FixIt, Fcefxer, Buster, MomWithOCDSon, EAMom, SFMom, SmartyJones, DCMom, Momaine, Iowadawn, Worrieddad, Tpotter, Vicki… I I wish I could name everyone who has helped me along the way, but know I’m missing some. (Thanks to Shiela and ACN, too, for hosting this forum…time to make my annual contribution!!) With gratitude and wishes for health, Kara
  11. I was having sleep issues as well. Melatonin only helped a little. My LLMD said to try 5-HTP. My understanding is that it is a precursor to melatonin production. She told me to take 2x50mg capsules about 45 minutes before bed time. Then, if when I woke up (which I was doing 4 -5 times a night) the first time, take one more. My sleep has improved dramatically. I fall asleep very easily and now wake up once or twice. Last week I actually slept for 7 1/2 hours straight for the first time in probably more that 13 years. Something to consider... Kara
  12. Sorry...It's in the sub-title, but I don't think that necessarily shows up when you view from a mobile device. It's tomorrow, December 3rd. 1:00 - 2:30
  13. Just PM'd you with a more local referral. I believe you are in MA area... I love Dr. B. and credit him (and LLM) with saving my dd's life. But I really don't think he's a Lyme expert (yet). I do think he's learning more and more though. Our dd's first Lyme (almost 3 years ago) test was negative, but showed a specific Borrelia band, which, Dr J., when I showed it to him a couple of years later, said indicated my dd had been exposed. So perhaps Dr. B. has learned more about the testing since your child's first round of tests.... The good thing is he at least knows now to test for it and co-infections, then to refer out if necessary. Kara (Just had to edit the post to include LLM )
  14. Hi, I am in Salem, MA, but a family from Portland contacted me today about our support group. About a week ago their son started ticcing. They haven't seen a doctor yet, but are wondering if it is PANS. I was hoping to steer them in the right direction for a quick local doctor. I know some of you have seen Dr. Price. I saw a post about Dr. Wu. Is that doc also in Maine. If you have seen any good Maine docs that would be a good first stop until they can get to an expert, could you please post, PM or email me some info to pass on to them? Thanks, Kara
  15. I think, too, that if you try an antihistamine, like Benadryl, and see that the rash improves/goes away, then it may tell you that it IS an allergy to something. If it doesn't go away with the antihistimine, then it may be something else causing the rash. Do others agree with this logic? Dr. B. mentioned it to me when we asked about a rash by dd had. (Conversation went something along the lines of: "Did it go away with Benedryl?" "No." "Then it wasn't an allergy.")
  16. I went last year with dd9 and ds11. Dd9's OCD was relatively under control, but not completely (i.e she had to carry her suitcase...couldn't roll it on the street.. and eventually needed to be carried herself). But her fears were germ contamination, so maybe not an issue for you kiddos. The highlight for her and my son was BY FAR going to see Mary Poppins on Broadway. It was OUTSTANDING! My husband and I took turns standing in line for a few hours to get discount tickets. But if you have enought time, apply for a Disney Credit card and you get 50% off Mary Poppins tickets. (At least that was possible when we went). The kids also loved the M&M store in Times Square. Toys R Us has an indoor ferris wheel which was fun as well.
  17. I PM'd you. Your email says private... Hope to see you there!
  18. Yes, thanks for posting and congratulations! I'll be posting our 3 year update in a few more weeks (i.e. Dec. 9). It's a good one, too!!
  19. Hi, We will be meeting from 1:00-2:30. If you are interested in attending this, please let me know and I will PM you the location info. Kara
  20. Hi, We will be meeting from 1:00-2:30. If you are interested in attending this, please let me know and I will PM you the location info. Kara
  21. It kind of blows my mind how they can interpret studies with 17 cases as statistically valid enough to publish in the NEJM... Also, to say the results challenge the argument that chronic Lyme exists, doesn't make sense to me. If the individuals they studied eliminated the infection, then were bitten again, then yes, it's a new infection, not chronic Lyme. But what about the people who never got rid of the infection but stopped treatment too early... http://www.bostonglobe.com/news/science/2012/11/15/repeat-symptoms-lyme-disease-are-from-new-infections-not-caused-relapse-study-finds/mAQj6U9ujhuCAMy3d1GkcJ/story.html
  22. I know many LLMDs test for this. I never quite understood what it meant...just that a low level was an indicator for chronic Lyme. This is a half decent explanation http://www.researche...tion.cfm?ID=200
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