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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

Does anyone know any ENTs who will remove tonsils and adenoids in Washington state or British Columbia, Canada for kids affected with PANDAS

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

Dr Kovasevic in Hinsdale

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 consultation and come directly to Oakbrook, IL for an office visit/consultation and IVIG treatment. He was amazing! While his communication style with adults is somewhat abrupt and slightly offensive at times, watching him interact with his patients is really wonderful. My son adored him. Dr. K’s prognosis and timelines were spot on. He was familiar with all of the current research, has a wealth of experience and could answer all of our questions concisely. The IVIG treatments were well organized, the staff members were compassionate and impressive , and the whole process was seamless. The follow up has been adequate: Dr K. only replies if there is something pressing or urgent (you need to write “Urgent” in the subject line,) but we have followed all of his post care instructions and the outcomes have been just as he described they would be. His emails are usually only 1 or 2 liners, but they tell you everything that you need to know. He saved our son and our family.

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

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

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

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.

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.

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 has us. It is also part of the pans consortium guidelines released this year. Good Luck

Thanks for posting. This is really helpful and encouraging.

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 behavior, and emotional lability have noticeably and significantly decreased. Vocal tics have resolved, teeth clacking in dec by 60% and intensity and frequency of head nodding greatly decreased. We went to Dr. K in Chicago. He has been treating PANDAS since 1998. He does IVIG treatments every week, on Thursdays and Fridays. He is familiar with all of the nuances of treatment and does an excellent job of monitoring each patient and making necessary adjustments for best possible outcomes. Not all IVIG is the same: the actual blood product (the way in which it is produced and the stabilizing agent,) the treatment protocol used and the way that the protocol is carried out, all highly influence the outcomes that you will get. You want a Pediatrician with tons of clinical experience to make sure that not only the treatment protocol but the individualized post IVIG patient care leads to the best possible results.

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.

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 before play dates if their child or anyone in their family has had strep throat in the recent past. Then we can make an informed decision about whether the play date should happen or not.this is uncharted territory and we will see how it goes.

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 to convince the insurance company to pay.

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.

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.

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?

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?