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Everything posted by ABdualPT

  1. If you google “liebertpub.com” you. Will come to an article entitled, “Clinical Management of Pediatric Acute-Onset Neuropsychiatric Stndrome: Part II- Use of Immunomodulatory Therapies.” If you view the article as a PDF, recommendations are on page 578 and more info on course of care on page580
  2. Does anyone know any ENTs who will remove tonsils and adenoids in Washington state or British Columbia, Canada for kids affected with PANDAS
  3. I do believe that you need to treat with IVIG in order to eradicate PANDAS. If you look at the Guidelines for the Treatment of PANDAS published in 2017 by Swedo and colleagues, it outlines that IVIG should be used for successful treatment. Sometimes 2 courses of IVIG are needed if you read the 2015 study published by Swedo, Kovasevic and someone else that I can’t remember
  4. Dr K is eccentric to say the least, but he is absolutely brilliant, has been treating children with PANDAS since 1998, and watching him interact with his patients is nothing short of amazing. My son was diagnosed with PANDAS in August 2017. The doctors in our surrounding area in WAshington State did not have expertise in the treatment of PANDAS. With our son’s abrupt, scary, and intense onset of symptoms, I wanted to take him to a expert in the field. After sleepless nights reading peer reviewed journal articles and researching pediatricians, I emailed Dr K. and asked if we could skip the co
  5. My son E., has PANDAS and is almost 6 months status post IVIG treatment. We were advised by the treating Physician that E. should have a tonsillectomy and adenoidectomy at 3 months, but could not find a supportive ENT to do this. We are still looking. Has anyone had their children undergo these procedures for the treatment of PANDAS? If so, what were the outcomes? Thanks
  6. T_Anna, How much did your son weigh when you were giving him the 25 drops? Just wondering if that dosage would be appropriate for my young son. Thanks
  7. Sorry I just saw that you are doing a phone consult and not an office visit. Whoops- long day. We did not do a phone consult. We were 90% positive that my son had PANDAS and called to ask if we could just come and have treatment. So, we flew to Chicago, had an hour long office visit and then 2 days x 6 hours each day of IVIG
  8. We went to Dr K and my son had IVIG. He is very much focused on your child during the first visit, so don’t try to interrupt. He will ask you, the parent(s) questions when he is done evaluating your child. It is really fascinating to watch him interact with the kids. He is really brilliant and very much focused on and attentive to his patients: the children. He is not much for small talk, but will answer your questions and because he has been treating this condition since the 90’s, he is truly an expert. You are in great hands.
  9. Hi ambersmommy My heart goes out to you. You sound like such a strong, caring, amazing Mom. I hope that you can lean on your friends, family or community services like respite care to allow you time to sleep and take care of yourself. A million positive thoughts and love to you.
  10. Our son had many,many of the same symptoms that you describe with your child. It was awful and I feel like he had these symptoms from about 4 years old. He is 9 now. It has been very hard on everyone, especially him, I can only imagine. We are 1 month post IVIG and I have my sweet, creative, fun, kind son back. I am not exaggerating. Emotional lability, aggressive, mean and oppositional behavior is gone. Insomnia and bed wetting and wetting his pants is gone. Tics are 90% gone, as is hyperactivity. If you have not tried IVIG, I highly recommend it and hope that it will help you as much as it h
  11. Thanks for posting. This is really helpful and encouraging.
  12. Tracey, I would do the IVIG. My son had the treatment last week and we could see changes the first day of treatment with noticeably less anxiety and he just seems so happy, calm and "light," after the procedure, and it was wonderful. So fun to be around. Vocal tics (trilling like a bird resolved, and throats clearing and repetitive vocalizations decreased by 80%) After the second day, Evan had some nausea and a headache for about 2 hours in the middle of the night, but then it resolved. It has been 5 days since the treatment and aggression, hyperactivity, insomnia, OCD behaviors, oppositional
  13. We just travelled from Seattle area to Hinsdale IL to consult with Dr. Kovacevic and the had IVIG treatment. He is nothing short of amazing. I highly recommend traveling to see him. The travel and treatment are expensive but my son was in excellent hands, and Dr K expects that he will have a 90% or greater resolution of symptoms within 3 months. Good luck.
  14. My son who is nine years old just had IV I G treatment over the weekend and will be starting school in a couple of weeks. I am really nervous. I have and Kate with him about handwashing and not sharing utensils with others and try not to eat with his hands. We have put him in a smaller school with a class size of about 24 kids in the upper elementary part of the school. In addition, I am giving a talk to the parents at the school and sending home fliers with the kids to let us know if anyone has strep throat and to educate others about PANDAS. In the meantime we are Asking other parents befor
  15. 4Nikki I am trying to get IVIG approved through our health insurance. The first step was to have our Pediatrician write a letter with specific information about why we needed treatment, which doctor we are going to In IL and why, and that it is a time sensitive issue. The insurance specialist was actually very helpful and told me what would be needed in terms of wording in the letter. I will send another letter of support from Dr. K in Illinois to Insurance, after we see him on the 16th. I can only imagine that we will have to appeal several times and send off some scientific literature to try
  16. My son was diagnosed on July 12. We are moving to IVIG on Aug 15, after having done antibiotics which helped a bit and we are now in the middle of a 5 day prednisone burst, which is helping. With any autoimmune response in the body, treating as early as possible yields the best results.
  17. My son has PANDAS. We are in Bellingham. We have done antibiotics, are in the middle of a 5 day prednisone burst and will travel to IL on the 15th for IVIG after finding limited resources here. Our Pediatrician here has been amazing though: very supportive and is writing letters of support for our course of treatment so that we can try to get more coverage from insurance. There is a ND in Vancouver, BC who we are going to see in September. She is listed in the PANDAS network and supposed to be very good.
  18. Thanks. We have an appointment with Dr K in Illinois in 2 weeks and will most likely do IVIG. I am hoping for a positive response. A 2017 paper by the PANS research consortium lists some detailed guidelines for the treatment of PANDAS with immunomodulatory therapies. Also, the State of Illinois has passed Charlie's Law making it the first state requiring insurers to cover the treatment for kids with PANDAS. I am wondering if it is covered for people from out of state having the treatment/procedure in IL or if you have to be an IL resident?
  19. Does anyone have experience with steroid bursts? Did they work for your child?Does anyone know of hospitals that will do IVIG in Washington state?
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