my daughter was diagnosed with pandas when she was 10, her symptoms were severe, her tics were in her arms and legs which prevented her from walking or doing anything herself. she was wheelchair bound for 1 year. She was hospitalised for 6 months and the only treatment available to her was pennicillin. We were told she would be free from any symptoms after a year. 4 years later and she is still clumsy, has ocd, and extreme mood changes. Does anyone know if she will ever be free of any symptom or will this stay with her for the rest of her life??
I live in Salem/Keizer Oregon. I too have a son with PANDA's. I would love to talk to you about this disorder. Please feel free to email me at ***@****
Has any one researched any vitamins or alternative medicine to treat PANDAS? My daughter has been diagnosed and I feel a little lost. She just had another case of strep, which brought back all of her symptoms, very strongly.
My son is now 11y.o. and we noticed issues w/ him when he was about 4. He was kicked out of every daycare and expelled from kindergarten within 2wks. He was originally dx'd with adhd, mood disorder, tourette's, bi-polar & sensory intigration. They then switched the dx from bi-polar to assberger's autism. We feel like this is the end of the road & he'll be this way forever. He's on seroquel to help his adhd and his tics have recently gotten really bad! My sister-in-law was telling me about this pandas syndrome & seems to think this sounds more like him than autism. I'm really interested in founding out more!!
I have a son that is almost 10 years old. He has all of the symptoms of PANDAS (OCD, tics, ADHD, mild tourettes). He was sick all the time as a young child. He has numerous food allergies and environmental allergies. We have been treating him with numerous supplements and B12 shots. We have tried some attention medicine but not found a good fit yet. I have just found out about PANDAS and he seems to have all of the symptoms. I am not sure what kind of doctor to see to help find a diagnosis for his condition. My pediatrician is very good but has discouraged us from seeking diagnosis (labeling him) and treat him as well as we can. He had a list of psychiatrists but didn't really have one that he really liked. He has had most of these issues since he was 4. The OCD, tics and tourettes symptoms really kicked at the start of 2nd grade. He went through a very rough 2 month period but got better (not well). He has struggled with eye blinking, mouth noises, putting his mouth on things, bad habits that come for a while and then change, putting his mouth on things, tapping and counting and other. He is a sweet and smart kid but can not always show that. He goes to a great school that has worked with him well - I am thankful for that. Do you think the low dose antibiotics might help? I live in the Portland Oregon area. If you happen to live close, maybe you could recommend a psychiatrist or doctor. I know that is very unlikely but just in case.
I am just curious. Is it possible for a child to have PANDAS for many years without a dignosis, therefor, never really getting better? I have a son who was very ill as a child, well, the first 3 years of his life, he was in and out of the hospital for blood infections, and strep. He had his tonsils took out when he was 4. He has had scarlett fever 3-4 times. Since he was 4 years old, he had behavior, major behavior problems which has resulted in diagnosis after dignosis. He has been diagnosed with Tourrette's, depression, ADHD (of course), PTSD, and some attachment disorder (cannot remember what they called it). He has been on all kinds of psychiatric meds. and nothing other than clonidine, which he is allergic to, helped. He is now getting ready to turn 14, and this has all spiraled out of control. It is like he is not in control of his own brain. He claims he cannot control any of his behavior, whether it be tics, or being defiant, or aggressive, which he is majorly! So, what i want to know, is it possible this could be my son's problem? And why, after all these years is this not been noticed? I just heard about it yesterday, and it has been on my mind since.
I have two kids. One was diagnosed with PANDAS when he was four and a half years old. I believe that my 10 year old daughter also has PANDAS, but she has not been given the diagnosis. Her history seems similar to that our your son. About three years ago she had Scarlet Fever and was treated with antibiotics. Within a few months she had symptoms of anxiety and a two week period of eye blinking. A couple of years later she had a bad upper respiratory infection that was not treated. Within weeks she started developing symptoms that looked very similar to what I had seen with our son. One symptom they both had was hand movements. My daughter waved her fingers almost like playing the piano. My son flexed and straightened his fingers. My daughter's most intense symptom at first was eye rolling. I'm not a doctor, but I've done a lot of research on PANDAS and Rheumatic Fever. I strongly believe that there is an autoimmune aspect to the symptoms my kids have had. Both have had Tics and OCD symptems. My son has been on a low dose of Penicilin for several years. It took about a year and a half for his symptoms to resolve. Occasionally when he gets sick he has a minor "flare up" that does not last nearly as long and is not anywhere near as severe as the first episode. My daughter is 9 months out from her onset of PANDAS symptoms. They are much less frequent, and also less severe. She is taking Clonidine, which has helped. The drug is primarily used to lower blood pressure, but it's been found to reduce tics and hyperactivity. My children both have significant allergies. They are caused by an over-active response to allergens by the auto-immune system. My thought is that PANDAS works in much the same way. From my observation, I think that my son's flare ups have been triggered by subsequent bacterial infections, such as sinus infection, and also by viruses. My speculation is that once the body is primed for a PANDAS type response, it can be triggered by something other than the Strep/Scarlet Fever. The good news is that my son is almost 13 years old and his PANDAS symptoms are essentially gone. He does have the occasional flare up, but these are minor. Usually my husband does not even notice a flare up.