AmbersMommy

Hi, My daughter is 6 and we just saw Dr. Bouboulis today for the first time. He said he is 90% sure my daughter has PANDAS. I'm replying to your post because this past week my daughter was seen by a psychiatrist because her PANDAS presented with hallucinations and frankly I am covering all bases. She said that she believed my daughter may be autistic. I can see why she may think that right now because currently my daughter is unable to keep eye contact with anyone. She flaps her arms funny. She is really spacey. She has what I believe to be hallucinations and the psychiatrist believes to be some kind of extreme-far-out imaginative play that some autistic children have. Honestly, she does seem autistic. However, she had been seen by a developmental pediatrician over the past few years and I would think they would have caught it if she had autism. Also, I didn't think autism was sudden onset... I am hoping to get confirmation of the PANDAS diagnosis with the testing that Dr. B. is having me get for my daughter. I thought you might find the possible autism diagnosis interesting taking into consideration your journey to get help for your kids!

Gosh this is so sad and scary. It is good you caught it early and are in very good hands as I understand with Dr. B. Keep us posted! Hi all, Still getting used to how to post on this forum. Saw Dr. B. today. He said he is 90% sure what my daughter has is PANDAS. She also has a sinus infection that we knew nothing about because she never complains of anything!! We have to do some blood tests tomorrow and order a kit from a Dr. Cunningham. Dr. B prescribed a 30 day course of Zithromax. Dr. B. is also having me get Amber tested for Lyme. How long will it take to see some results from the antibiotic if there are going to be any? It would be wonderful if we could confirm PANDAS...or Lyme. Dr. B. is having our whole household tested for strep. Not looking forward to getting my 2-year old with super-human strength tested. We are going to have a battle royale with her. Amber is on probiotics and Fish oil daily! I've got to go now and sleep with my daughter. She still is having trouble getting to sleep. Have a good night/day depending on when you read this. Thank you so much for all of your replies to my post!!!

Hi. I have never posted here before. I have been hesitant because I am not really sure if my daughter has PANDAS or not. She is 6 years old. Briefly this is what has happened. On May 3rd my daughter tested positive for strep using a rapid strep test. She was put on Amoxicillin. By May 5th she started having trouble going to sleep. She has hardly ever had trouble before. Bedtime routines were just that...routine. On May 10th I woke up with my child on top of me screaming that there were bugs and monkeys and of all things Humpty Dumpty in her room. She was terrified. She started visually focusing on things that weren't there and she started making hand motions...kind of like swatting motions. We ended up in the ED. She was seen by a psychiatrist who said it was a reaction to the strep virus and that it would just go away in 7-10 days. I brought my daughter home and she continued to hallucinate. We ended up in the ED again a week later because she was still hallucinating. She tested positive again for strep using a rapid strep test. They put her on Keflex for 10 days. They told me it could be PANDAS. She also has instances when she thrusts her chin forward 3-4 times in row. She also sticks her tonque out between her teeth 3-4 times in a row. Sometimes she only blinks one eye a couple of times...kind of more like a twitch. She has laughing fits 2-3 times a day or more that last up to an hour. I managed to get an appointment with Dr. Bouboulis this week. I really don't even know what to ask him or say to him. I don't know what to think of my daughter's symptoms. One thing that hit home with me when I was reading posts was when people said they no longer have the same child. As far as I am concerend my daughter is gone. I have a new person living in my house who hallucinates almost constantly. I am house-bound with my 2 year old and no family here. Her psychiatrist wants to prescribe Risperdol to control the hallucinations. I don't know if I should do it or not. I hate to see my daughter like this so I am leaning toward giving it to her. If it is PANDAS will giving her the medication to stop the hallucinations make a difference in trying to control the PANDAS...negative impact? I have been giving her Ativan to get her to sleep at night and really it hasn't helped that. It has, however, calmed her down so that she is not running all over the house at 4:00AM. If anyone can give me some insight on whether they think this is PANDAS or not I would love to hear it. I'm sorry if this is rambling or incoherant. Unfortunately I don't get much sleep anymore either. Thank you!