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Ashlynsmom

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Everything posted by Ashlynsmom

  1. ENT ordered meds during and immediatly after surgery--not a PANDAS doc.I really don't know why we took her off Zith maybe because she was doing well and has abd cramping from too many antibiotics already...just picked up Zith after other antibiotics were complete.
  2. DD12 had T&A July 27--had been assymptomatic since May (only a few things creeping in every now and again) Severe symptoms including sneezing tic for months. 500mg Azithr. 3x per week since Dec. Stopped Azith day before surgery and she was given iv Rocephin during proceedure. After surgery she was given omnicef 2xper day x 10 days; nystatin oral suspension 3x per day x 7 days;and pain meds. Azith was started back after 2 weeks. We requested tonsils sent off for path ENT very surprised with following: Staphylococcus Aureus(heavy), Streptococcus Viridans (moderate). They also did sens
  3. Yes, the PANDAS seems to be under control but the titers keep rising. Hmmm there may be thrush-tongue is patchy and white. How do I address the yeast? I hate to add antibiotic because of stomach pains but will if neccessary. We use probiotics but maybe not enough.
  4. I know this is alot like your post dabel but a little different. DD12 is the one that had the sneeze tic and recently had T&A with high hopes of stopping this dreadful disease.No major symptoms since May but ASO of 409 and AntiDnaise of 776 in May.T&A end of July and tonsils looked like had multiple previous infections.DD has actually been doing well but had blood draw Sept 17(about 7weeks post T&A) Results-ASO 409 and AntiDnaise-871.What is this about?!DD just general not feeling well, still complains with chronic sore throat(not severe),slight stomach aches,pretty much daily hea
  5. Sounds like you have all your bases covered. Just wanted to give you hope--DD had hers out end of July and is doing extremely well--I know this is the right decision and ds will do great--tell him to eat lots of ice cream!!
  6. We never did pex or ivig because she got better before insurance approval but both ASO and AntiDnaise kept rising. But the sneezing stopped, the crowd anxiety and the seperation anxiety disappeared as well as the OCD germ thing (couldn't go to public places for fear of germs),the other fears left and finally the nightmares also. 6weeks post T&A and nothing has returned. Yes she got drip antibiotics plus 10 day's after (can't remember what was given but will get all reports this week) Azithromycin started after 10 days of other antibiotics. Her ENT just sent tonsils for path and
  7. Please google Irlen Syndrom or Scotopic Sensitivity Syndrom. My DD as well as non pandas son have this. I have spoken with Dr T about this on several occasions and he has told me he has also noticed some kids with light sensitivity. I do not believe the two are related but do believe the part of the brain effected by each syndrom is somehow making each of her conditions worse. After reading about this if you have questions or want me to elaborate more please PM me. You will be amazed at the symptoms similar to what you are describing in your child! Light sensitivity is real and effects m
  8. So Glad to share!!! Had T&A on July 27--even though strep swab always neg the tonsils were sent to pathology and showed positive for strep and could tell had long term infection present. DD did great with no sign or symptoms of PANDAS then or since! Dd has stayed on Azithromycin since surgery and will be doing ASO and Anti-Dinase (sp?) next week. I will post results lets pray her levels are going down!!
  9. Be careful of the meningitis as one of the vaccines is live for this. DD11 got this and started tic 6weeks later Dr. T's thoughts were that it may have triggered. Something about the 6week mark - vaccine titers are at peek. Start with researching the brand of vaccine your doc gives--
  10. DD has a sneezing tic and took the azithrmycin pack for 5 days off 5 days than again for 5 days. Than after 5 days started 250mg 3x's/week eventually increasing to 500mg 3x's per week per Dr T. the tic went away after a month it stayed away for about 2months so we reduced antibiotic back 250mg. When the tic returned we started back to 500mg 3x's/week and it went away after almost two months and have kept this dose since the end of May. She also gets the terrible nightmares which are the last to leave. They are def related to PANDAS not the med's because she had them for months before diag
  11. We have been to many many doctors including a week stay in Texas Childrens in Houston (That being a huge waste of money and time). No one has helped us like Dr Jane El-Dahr at Tulane. She not only will treat the child she will help fight the insurance company also-- This is actually how we got to her. DD11 needed IVIG or PEX and insurance refused to pay. My daughter got better before the approval but she was still going to work on it. She has studied PANDAS and has conferenced with Dr Swedo. Stated all the test and treatments talked by parents here. She insisted on taking DD tonsils
  12. I know it's not Houston but close if nothing else comes up--- Dr. Jane M. El-Dahr, MD 1415 Tulane Avenue New Orleans, LA 70112-2600 (504) 988-7625 She's an immunologist and seems knowledgable on PANDAS
  13. Dr. Jane El-Dahr Pediatric Allergy & Immunology Tulane University School of Medicine 1415 Tulane Ave New Orleans, LA, 70112 Phone Number:(504) 988-2300
  14. My 11 year old dd started when she was 9 with daily chronic migraine headaches. I know this was the start because she had a severe upper respiratory infection (prob strep) then these severe headaches started. She basically had a severe headache for a year and a month when they stopped abruptly and one month after that this bizarre sneeze started that eventually turned into a sneeze tic that did not stop for 13 weeks. She still has severe headaches usually leading up to an exacerbation. Sometimes she just sits and holds her head crying and they go on for days but migraine meds only help tem
  15. Great information! I will have tonsils cultured-didn't know to ask. My dd weighs about 87 lbs Yes--family has had throat cultures and where negative--wish I knew how to go about checking cat and dog ? I believe the abx rifampin is what ENT said he wanted to use--and looked it up-it is the one that turns tears and urine red--great to know because it will ruin contacts and she wears very expensive tinted contacts for a light disorder she has -- that would have been great
  16. I know this topic has been addressed but it never hurts to re-visit every now and again. My dd has been symptom free for about 1 1/2 months and on antibiotics but her ASO is higher than ever before and Anti-Dnase is also high. Dr thinks it is now a good idea to remove tonsils due to chronic sore throat. I am aware that symptoms may return in full force after this surgery. What preventative measures can we take after surgery to help this? My immunoligist is great and has treated PANDAS before but this is all new to our ENT. He is open to suggestions that have benefited other PANDAS kids. Dd
  17. My dd has PANDAS but also a visual perception issue called IRLEN syndrom or Scotopic Sensitivity Syndrom which is actually a severe sensitivity to light as which causes many visual perception issues you all are explaining seeing in your children. I have mentioned this to Dr. T who finds a coorolation in some of his patients and light sensitivity. I do not believe the two disorders are related but i believe because of the part of the brain that is affected one makes the other worse. My dd is one of those children with the sneezing tic and it is sometimes directly related to the change in li
  18. All of this is very informative! A few thoughts---My dd's doctor's here (going to a new one Thurs) do not feel the antibiotics work since her titers continued to rise and she started the symptoms while on high doses. Some battles are not worth making doctor mad over--Is the antibiotic issue? The primary care continues to site journals that do not back up the use of abx. Therefore, I guess it is safe to say she got out of this excerbation on her own--she hasn't been on meds in about 6 weeks. Does anyone think this leans toward her getting better? How else would she have gotten rid o
  19. Wow, tough question. The problem is that if you aren't in an exacerbation, then it's harder for the doctor to justify IVIG to the insurance as necessary -- and more importantly, it's hard for the doctor to show efficacy (in case you would need it again). In addition, there are some risks with IVIG so if you seem in a good spot, I wouldn't mess with it. While I think alot about the comment of the other post "we want to win the war not just get a truce." I think it's a lot easier to recruit all the support when the enemy attacks and harder to get justification during the truce. For what it'
  20. My 11 year old daughter was recently in a very bad episode of PANDAS. She gets the sneeze tic along with severe OCD issues. She sneezed for 7 weeks and just stopped abruptly on Sunday. Leading up to Sunday I had noticed she was starting to feel better and symptoms were getting better. She feels really good today and is back to her old self. Our problem is that we have been fighting wit the insurance company to approve IVIG and I got a call from a docttor today--we were persuing PEX. Trying to get one or the other approved. This question is actually has anyone gone ahead with either p
  21. Lyme IGM AB panel 12-4-09 IGM AB bands present none---AB IGG panel band present 66 kDa Does this make sense? Should I have the western blot re-drawn? I am confused if I am being told dd may have Lyme instead of PANDAS or along with PANDAS or is this maybe what caused PANDAS? Where can I get GDU product and I love the epsom salt remedies--we believe in the epsom salt!
  22. Her test for Lyme was neg. I will def try the magnesium and epsom salt! We massage and place the heat pads with meds and have changed pillows. She has bad headaches right now too but this has been one of her symptoms all along. As far as the deep breathing--she would love that! Waiting IVIG and she said the first thing she wants to do when sneezing stops is take a deep breath in and let a deep breath out
  23. Yes Ashlyn actually has the sneezing tic (for 4 1/2 weeks this time) but it is not a forceful sneeze to where the head is slinging at this time. The sore neck has been present before but has gotten severe the last couple of days.
  24. My dd has been complaining with very stiff and sore neck. Can anyone explain what this is from and what I can do to help?
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