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NVAmom

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Everything posted by NVAmom

  1. Hi Dr T, I have an 11 year old son originally diagnosed with Tourette's Syndrome when he was 7. He had a sever strep infection last spring with a return of all the PANDAS symptoms that we have been told for years were a comorbid condition that went with TS. Thankfully, he was diagnosed last fall with PANDAS and began Augmetnin 875 mg 2x/day. We have seen slow steady progress but still have a ways to go. He had blood work in Aug before the antibiotics. Here are the results: Lyme, Western Blot, Serum Lyme Ab IgG by WB IgG P 93 Ab - Absent IgG P66 Ab - Present - Abnormal IgG P58 Ab -
  2. I think the idea of a time line vs a paragraph format is a great idea. When my son saw her she went through ours and asked questions about anything was not clear. I also took copies of handwriting before, during and after an exacerbation. Also, does your son do any sports? My son does karate. I had noticed a change in his balance during class one day. I went back to look at old videos of him at karate events that were taken before a strep infection last winter, during an active infection last spring and after 3 weeks of antibiotics this fall. There were obvious variations in his balance. I pl
  3. Hi Coco, I am sorry that you are going through this. It is so hard to see your child improve and then lose the progress that was made. My son was misdiagnosed with Tourette's in first grade. We were told his tics, his behavior problems, seperation anxiety.....everything was a co-morbid condition of TS. He had an unbleievale exacerbation last Spring and was not correctly diagnosed with PANDAS until this fall. He went untreated for 4 years at least (looking back I think the first PANDAS episode was around 2 or 3). He started on antibitotics in Sept and the doseage was increased in Oct. He was do
  4. I also have struggled with the 'why my child?' thought. Now when I think about it I think of how I maybe able to offer help - to another parent in the future. However, what really excites me is thinking how my children might help others in the future. I daydream at times that my PANDA's son will have a passion for research or for healing ....to help others based on his battles.... or my daughter may have the same passion.... after seeing how her brother has suffered. No matter what their path, I feel our family is also learning to to have more compassion along the way.
  5. Hi, My mom had sent me this link and was going to order this product for my son if we had to go the IVIG route or many more blood draws. It is called "Buzzy for Blood draws". I think the site says they are not readily available until 1/2010 but they say if you have special circumstances they might be able to help you earlier. Here is the link. http://www.needle-pain-management.com/buzz...lood-draws.html Would love to know, if you decide to try it, if it helps you dtr. Debby
  6. Thanks Debby. It does help. The more info I go in with, the better, I think. How long was he on the 500mg twice a day before the dosage was raised? Angela He was on the lower dose for about 5 weeks. The reason he started the lower dose was because he had a sinus infection. However, he had extreme behavior the day before we found out he had a sinus infection so the psych increased his Abilify the day before stating the antibitotic. At the time I was just learning about PANDAS. When we began seeing improvements I felt it was too soon to attribute the improvements to the Abilify since
  7. Hi Angela, My son is 87 lbs, 11 years old. We saw some improvements in his mood, attention and rages at an initial does of Augmentin 500 mg 2x/day. We saw even greater improvements in the symptoms already mentioned on 875mg Augmentin 2X/day. His vocal tic also went away on the higher dose (until his sister got pink eye.....and now we are back where we started with regard to most symptoms). Hope that helps. Debby
  8. Reading your post brought tears to my eyes. I've been there....maybe not over flashcards but getting the number or letter etc to look perfect...even after he had erased until there was a hole in the paper....then he was upset over the hole in the paper. I've tried holding him tight ....even though he may resist at first ....eventually his body would go limp and he would lie in my arms and cry and evenually it would pass ...until the next obstacle.
  9. Hi CP, I know that is a difficult decision to make. My son was diagnosed with tourette's in first grade. We have learned within the last 3 months he was misdiagnosed and he actually has PANDAS. He had his adenoids removed in preschool. They were doing an endoscopy and bronchoscopy due to chronic croup and reflux and determined the adenoids need to be removed during that procedure. The only real change we noticed after that was he no longer snored. My son had his tonsils removed in first grade. He is now in 5th grade. He was also in his first full blown PANDAS episode but we did not
  10. I thought I had a better understanding of 'sawtooth' healing after reading some posts from yesterday but now I'm not sure how you tell the difference b/t 'sawtooth' patterns and exacerbations. Can anyone help me understand how I know my son is not at the bottom of the saw tooth vs in a complete exacerbation? Also, he has had a difficult week with increasing seperation anxiety and rages but this morning I realized he has a mouth full of sores and one in each corner of his mouth on the outside. I think I have read that can cause exacerbations but can you do anything for it? I have him using
  11. I was wondering this myself. This is probably a dumb question..... but what would be done if a child's blood tests postitive for strep if they are already on antibitoics?
  12. I can echo dcmom. We had a cliff of symptoms in June of last year when we put our dd on azithromycin. On the 10th day (after commencement) we had a break-through where she finally could vocalize that she wanted to get better and then symptoms dissipated over the next month until by mid August she was 90% back to normal. In our own case, we kept a daily log and then a weekly log because outside of that time window it is impossible for us to "remember" what happened. In addition my dw would mark major events on a calendar. When we plotted the last 75 weeks, there is a noticable ramp and de
  13. Hi Susan, I am so sorry to hear about your experience today with the nurse. I know it is so disappointing to wait for an appointment that you think will offer help and it to be changed. Could you get an e-mail address for the DR?
  14. Hi, my son's score was 156, however, he had been on Augmentin 250mg /day for about 5 weeks prior to the blood draw. I would say at the time the blood was drawn his symptoms ranged from mild (tics) to moderte (anger outbursts, fine motor and gross motor chagnes, attention). Hope that helps.
  15. THANK YOU! THANK YOU!!!! Last night he was having a very difficult evening and I gave him an Advil (not easy to persuade an 11 year old to do in the middle of an anger outburst) within an hour he was much calmer....and wanting to be around the rest of the family . Usually when he has an evening like last night he wants to be left alone. I am not sure it was the Advil but will definitely try it again.
  16. Thanks for the reply. Does the Advil work by reducing swelling in the basal ganglia?
  17. I don't think he has such a drastic uptick in PANDA behaviors with a virus but it has actually been a while since he has had a virus. Thanks for your response!
  18. Thank you for your respnse. He weighs about 90lbs (11 years old). He seems average compared to the size of his classmates even though he is a year older than most of them. I think she did not start the steroid because when we went to see her for the follow up everything was great. The chorea and attention problems were still pretty evident but I think compared to where he had been she was seeing great progress on just the antibiotic. I definitely saw a huge improvement in his behavior (he was happy, joking, playful) when we started the increased doseage of the antibiotic. As for why she incre
  19. I have been reading the posts in this forum since Aug and first want to say how thankfuk I am for this site! In the darkest nights I would read some of the posts and it would give me hope. I am posting for the first time to get some of your thoughts. I will try to give a brief background. My son has always been a quite, shy and reserved child with OCD tendencies. He began clearing his throat constantly when he ws 2. I thought it was because he had been taking an allergey medicine that was drying him out too much. Stopped the medicine but the throat clearing continued. He had chronic croup unti
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