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Everything posted by tapiash

  1. We did but our doctor listed the condition as an autoimmune disorder and encephlatic "symptoms" The medical request did not have PANDAS diagnosis.
  2. Did you PM me? I didn't get it.
  3. My son had a reaction after the flu mist. It was 2 days after. Had no idea about PANDAS at the time. He had a second dose a month later. That is when the symptoms became worse. I woke up one night and realized I bet it was the flu mist which exacerbated the symptoms. As I was researching sudden onsets of OCD and tic I came across PANDAS. I found a doctor who diagnosed my son without any previous strep infections or any infections at all. He had not been to a doctor in over a year prior to vaccine. However, he did have a high cam k. I followed through with the vaccine compensation program and
  4. Its been a while since I have been on but my son had 4 IVIG approved with Cigna. We didnt even have to appeal. We had a diagnosis of PANDAS. And also a code for general autoimmune disorder and I think encephally.
  5. So how do I find this doctor. We are in NM. It took us years to find a PANDAS doctor. Now Im no thin king it is PANDAS
  6. He had a High CaM K. We live in a very rural area. My son in is the only one diagnosed with PANDAS in the entire state. My doctor is in Ca. We continued his treatment because last year it worked. i am following the orders that's it. I am confused...why have you been treating him according to PANDAS protocol for a year if you are not certain he had PANDAS? Has a doctor been prescribing all those meds without having determined that he does in fact have PANDAS? If so, that is alarming!! In answer to your question re steroids, if he has Tourette Syndrome then yes, prednisone and other simila
  7. We have been treating my son for the past year with PANDAS protocol. Antibiotics,prednisone and IVIG. fish oils, epson salt. Recently He started ticking REALLy bad. His eyes are blinking,he is rolling them. Today he started opening up his mouth along with a funky movement. I started him on prednisone today and it made the tics a whole lot worse. Very extreme. This happened last time I put him on so I took him off. Can prednisone cause tics to be worse. Does he have Tourettes and not PANDAS. I'm trying to get an appt. in Houston but I don't know what to do in the mean time. I FEEL So bad fo
  8. What is XR? Dumb question,I know. I need to go back and review the book. What is GAS?
  9. Its been a VERY long time since I have been on here. Until recently Ethan has been doing great. He has had steroid burst,antibiotics, and IVIG . All which have been very effective until know. He had a case of impetigo about a month and he started blinking real bad,behaviors started to become worse. He was started an antibiotic and a prednisone both of which have been successful in treating his eye tics. It has been two weeks since he started steroid burst nothing! His eye tics are worse than I have seen. Very freaky! Any suggestions??
  10. Hi. I live about 3 hours from Albq. My son is doing a lot better.He has his days. Definitely the kiddo he was before Pandas bu he is better and I am grateful. He was also diagnosed with tourettes as well as ocd, and Add without hyper activity. You found a great resource. It has helped me tremendously. Let me know if I can help you in any way. Where did you move from?

  11. My son has had 4 IVIG. All made in full by Cigna. I did not have to be reinbursed because I did not have to pay any out of pocket. Is this what you are asking?
  12. I sent you a PM. Unfortunately there is no docs in NM. We traveled the world before we found our doctor. let me know how I can help you. I live 3.5 hrs from ABQ
  13. "officially" sick is when the immune response takes off- I don't know how long it takes w/ strep for the immune system kicks in, but I think there's a good chance the friend was contagious on Saturday. Anyway to get some abx and or prednisone? You could try ibuprofen to help with inflammation in the mean time. Sorry this is happening. Praying that this is a blip and not the start of something bigger. Thanks so much. We have a prescription of zithromax available at the pharmacy. Is penicillin better? There is never an ending to PANDAS is there? Does anyone know where I could find
  14. As many of you know my son started receiving treatment for Pandas in May. He has had antibiotic,steroid and three ivig. He has been doing amazing but on Wed he came home blinking non stop. During his first exacerbation thats how it started and everything gradually got worse. At first I thought he was reacting to the flu mist because it has been given to others at his school but as it turns out a buddy of his had strep last week. He played with him on Saturday and on Monday is when the friend missed school. It turns out it was strep. Could this cause an exacberation even though the firend was n
  15. My sons symptoms started after the flu mist as well. He has been receiving treatment since May and has been doing amazing. They gave the flu mist at school (not my son) but others and today he started with blinking again. This is how it all started last year immediately after the flu mist. I think he is reacting to the live virus. Not looking good.
  16. All of the blood work we had done came back normal. It was ordered by Dr. T. Dr. T left us hanging after we paid him 250 dollars. It was a nightmare and very unprofessional. We drove 17 hrs to see Dr. Lin. I have so much respect for Dr. Lin. He is very professional and will do whatever it takes to get results.

  17. I called and they slowed the rate of the infusion. Dr. Lin likes to have it all done in one day. I don't mind having it done in one day. It is nice to not have to go back. It just needs to be done right. This was our third IVIg and my son has made vremarable progress with Dr. Lin's protocol.
  18. My son takes liquid silver. He takes 3 or 4 squirts a day. He has not picked up anything so far. neither have my other kids who take it.
  19. Today my son is 4 hours away having his 3rd IVIG. I am at work so I can stay home with him home tomorrow. I just called my husband and he said the IVIG will be done in 3 hours. What? He is having a 2 gram dose all in one day. It is a different nurse and apparently she doesn't know anything. Previous IVIG's were 6 and 7 hours long and they were also done in one day. It is not going to be pretty. I hate being so far away and feeling so helpless. I really trusted that my husband would be a better advocate and watch out for those things. He has been to all previous IVIG's and knows the risks of h
  20. Vickie-It is during school hours. There better not be an "oops a vaccination" I will probably pull him. out to be safe
  21. All week!!! I am so frustrated!
  22. My son is doing so well and next week they are giving the flu mist at his school. What do I do? I know for a FACT he will not have one but what about his classmates that get one? Are they contagious? What is shedding? His exacerbation was so bad a last year after having the flu nasal mist. I do not think I could bear going through that again. As a matter of fact, I know I cant go there again. I'm in a state of panic!!!!
  23. Hello, I am so happy that your son is doing good are you on any abx's at all? and what is liquid silver? Our DD had IVIG in Feb with Dr.k and she is also doing great,We take one day at a time and enjoy all of the good days just incase the bad ones come back. Thank's Tracie&Doug Silver supports yeast,immune system,gastro problems. He takes 5 squirts daily. During and after IVIG he will take antibiotics again but then wean gradually. Some say it is risky but it is working for us. When it no longer works we will try something else. I am not oppossed to antibiotics but it was t
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