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pchelle

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Everything posted by pchelle

  1. Hi! My dd, 15, did home bound teaching for 80 days last year. We live in North Carolina, so I am not sure if it is the same in every state. She was assigned a teacher that came to our house each week with her assignments and tests. If I remember correctly, she had to provide 3 hours each week. The teacher would help with assignments the best that she could and also watch over my dd while she took tests. The only problem for us was that she was a history teacher and knew nothing about algebra II or French. So for us, that meant going after school to tutor with the algebra and French teacher. I hope that this little bit of information helps and I wish all the best for your son and your family!
  2. I live in Charlotte and have just started taking dd to Dr. Mauve O'Conner. I found her on the Saving Sammy website. She is really an allergist/immunologist but works with PANDAS 2 days a week. We have only seen her twice now, the first time for the blood work, and then for our results. She tested for everything including lyme.
  3. I can not thank you guys enough for all of this information! Not understanding is a horrible feeling, but I am so thankful that you are guiding me. I will continue to research lyme and go through previous posts. It's so crazy, but as I read through the symptoms of lyme, especially bartonella, I am reading about myself! I've just always blamed my feeling bad on the stresses of life. When I had cat scratch many years ago, I'm sure that I never even took the whole round of antibiotics. (b/c I never do) I will see if we can get a family discount when I find a LLMD. Thanks bunches again!!
  4. Thank you so much for the great info! I will read, research and hunt for a LLMD. I will list the results best I can... Lyme disease antibodies (IGG, IMG) Western Blot Lyme disease AB IGG WB (IGG) band 18 kd 23 kd 28 kd 30 kd 39 kd non-reactive (IGG) band 41 kd 58 kd 66 kd reactive (IGG) band 45 kd 93 kd non-reactive Lyme disease AB (IGM) WB (IGM) band 23kd non-reactive (IGM) band 39 kd 41 kd reactive
  5. I received my daughters blood work results on Friday and am in hopes that someone can help me understand. She is 16 now and had typical PANDAS symptoms throughout elementary school. We now face severe depression/suicidal thoughts, etc. Doing better or Effexor and Abilify. (horrible past on Zoloft and Prozac!!) Her blood work came back positive for Lyme Disease. Where did she get Lyme? I never remember a tick bite. It makes me wonder if this is something she got from me. Before I got pregnant with her, I had cat scratch fever real bad. (huge lymph nodes, etc.) Also, her blood work showed that her Immunoglobulin G is very low.(5) IGG sterotypes, out of 14, only 2 were in range. Dr ordered a Pneumovax injection to see if this will raise her levels. We are going to do the blood work again in 6 weeks and see if this injection helped and then start on dioxocycline (-1 for spelling) to treat the Lyme. Any thoughts on this? I am so confused! Thanks! Michelle
  6. My daughter has the same type of thoughts when she was about that same age. (16 now) We had to put all of her Barbie dolls away because she thought they were "doing sex". She was always confessing bad thoughts about things that I couldn't believe she knew anything about. It would all stop as soon as the strep was out of her system. She still remembers all of the crazy thoughts that would take over her brain. You are doing all the right things...hang in there!!
  7. Hi! I live in Charlotte, NC and just happen to see this post. My daughter has just started seeing Dr. Mauve. O'Conner here in Charlotte. I believe that you are only about 2 hours from here. She is a wonderful lady! We just received our blood work results on Friday and I was just about to post for help understanding what they all mean. I will be glad to give you her phone number if you would like. She treats PANDAS 2-3 days a week. Michelle
  8. My daughter got it last year for the first time...couldn't get rid of it with over the counter shampoo. When I was at wits end, I called her doctor and they gave me a rx for something that cleared it up first try. If she gets it again, I would go that route first. Bless your heart!!!!
  9. My DD, (15) did horrible on Prozac and Zoloft. They both landed her on the psych ward and very suicidal. I'm with you...they made her very strange! Last visit they changed her to Effexor and dr just upped it last week. I don't see such a deep depression with this rx but they are all making me nervous. I do still see mood swings that come from nowhere. Thankfully, we just got an appt with a dr to get the PANDAS wheel rolling. I will keep you posted on how the appt goes!
  10. Hi! I just made an appt with Dr. Mauve O'Conner in Charlotte. I do not see her on the list above but found her on the Saving Sammy website. She has started her own practice and is no longer with Asthma and Allergy Specialists of Charlotte as I believe the website may still say .(?) I had been trying to get through to her for about 3 weeks and called again today and she personally took my call. From what I just learned from the consultant that called me back, is that they do not bill insurance for the office visit (yuck), but will bill for lab work and such. Her facebook page says that she treats PANDAS patients 2-3 days a week. I am thrilled just to have an appt with someone that acknowledges PANDAS!!!! Hopefully this helps a little. Best of Luck!
  11. Hey Sis! Be sure and read "Success Stories?" posted on June 12. Great info and hope!! Did your DS tell you that he came by mama's house to say goodbye to my DD when he woke up? (at 12:30 am) I KNOW that it took everything he had to get himself there. He feels so responsible for her well-being while we are in town. They have such a bond and want so bad to be there for each other. Don't stop searching for a doctor in Alabama. Call UAB...there has to be someone at that huge research hospital.
  12. Thank you for all of the great info! I am still waiting for a call back from Dr O'Conner's office to get this started. I will make sure that all of the test you recommended are run. I will also research the methylation and work on the "gut" you suggested too. I have read how important that is, but out of nowhere in December, she decided that she would no longer eat meat. She is now a vegetarian (not that she eats veggies) and I know that her body is lacking so many nutrients. I will keep you posted and do my research!! Thanks
  13. I have a 15 year old alien too...but mine is female. I needed the laugh today too = )
  14. Hi! I am so sorry for everything you are going through! It sounds so much like my dd's story who is 15. I posted last week for the first time and as I read you story, I thought I was reading my own post. I am heading to my first doctor visit today to get the ball rolling. I don't even know if she has PANDAS, but she did suffer with it all through her elementary years. She has now been diagnosed with severe depression, she is cutting and has constant suicidal thoughts. She just got out of the hospital last week and they changed her medicine again. They got her off the prozac and started effexor and abilify. I am so nervous that these rx are wrong if we are dealing with PANDAS. She also has missed 70 days of school since December and trying to catch up is a huge stress. I will keep you posted as we begin our journey. I will keep your family in my prayers Pchelle
  15. I can not thank you enough for the hope that you have sent me! I will not stop until every every test has been run. I read the book, Saving Sammy, years ago and woke up yesterday morning with it on my mind. I began searching the web and found this site. I feel that my daughter is "different" from the other kids at the hospital. Even the doctor says that she notices mood swings that she feels are triggered but don't know what is triggering them. If we can't find the answers while she is on the unit, I found a doctor about 30 minutes from here that works with PANDAS patients. That will be my next visit.
  16. Hi! My name is Michelle and I have just come across this site and hope that someone could help. My daughter is 15 years old and had PANDAS all through her elementary school years. We would know she had strep before her throat even started hurting. Her sentences would always start with the words, " do you think it's okay..." We would go straight for a throat culture and it would be strep. Her OCD behavior would continue until she had been on antibiotics for a while. Until we figured out it was the strep that was causing this behavior, we thought our child was going crazy. Well, here's my concern now that she is a teen. For the past year, she has been in and out of the hospital on the child behavioral unit. She is back again and is on suicide watch. She was diagnosed with major depression, eating disorder, suicidal and a cutter. She obsesses on all of these behaviors. She has tried Zoloft and Prozac and neither helped. This visit she is starting Effexor. Last night I started wondering if there is any connection to PANDAS and the behaviors that she is now experiencing.
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