MarkW

Kelly, More recently although we've been doing Super Omega 3, we've also been using Evening Primrose Oil (which is 6). We did this because of the recommendation from Dr. Mary Reed Gates at www.ocd-free.org. She felt we needed to build on the thin myelin sheathing and highly recommends Evening Primrose to accomplish this. So if I'm hearing correct stick with the 3's for PANDAS. I would hope that 3 also helps boost/rebuild the thin myelin sheathing also. Mark

Emma, It is indeed difficult to find information on later teen/PANDAS. I have found articles at Science Direct and The American Journal of Psychiatry that speaks to later teens/adults meeting every criteria for PANDAS except for age. I did want to ask about your daughters onset, was it an almost overnight situation with tics/OCD as so many describe? Our situation seemed to evolve more slowly where moods/memory became noticeable, then anxiety and finally followed by OCD and the rest of the described PANDAS symptoms (age regression, bedtime rituals etc). Now many of the symptoms have subsided but anxiety and hyperactivity along with mood changes are in a constant state of flux. I must admit I am somewhat confused about (not using Omega oil) so as NOT to boost the immune system. Our psychiatrist has been very proactive with vitamins, oils and amino acids. We are now 2 years into this and don't see an end in sight. Thanks

Emma, Our son developed Tics/OCD (mostly OCD) well into his teens around 18. He was also having high anxiety/panic episodes. His memory/moods were affected as well. He had pretty bad allergies all the way through childhood. Some OCD syptoms included repetitive door locking, holding breath, and whistling. In addition and I believe it still to be OCD is he seems to channel all his thoughts/energy into something and can last for weeks (Ping Pong, Shooting Pool, Video Games, Internet/MySpace and more recently an obsession with visiting family out of state). The repetitive OCD symptoms have mostly dissipated but the obsessions seem to persist. As far as oils, we have been giving him Evening Primrose Oil along with vitamins and amino acids. We also tried Inositol for a period of time. I have gathered that we have a very unique case on our hands and there could be more to the story. During these period of anxiety/panic episodes he can be very oppositional. That is one disadvantage we face as opposed to a younger child who generally will follow parents advice.

Kelly thank you so much for your input. I am aware of the IVIG and who knows where are journey will lead. I'm very glad you caught/diagnosed your PANDAS so quickly. Maybe that was our downfall in that there were no overnight tic symptoms or OCD but seemed to be a gradual thing. Mark

What I had listed recently came from Dr. Mary Reed, our local Dr. has him on quite many different vitamins/amino acids/oils. I've ordered but haven't administered her vitamins/herbs yet. I have been asked several times now about why no antibiotic and that is something we do wonder about as it wasn't high on our Drs priority list.

Our doctor believes in minimal meds as possible (as we do) and we all thought he was at a point where we could discontinue and so we did in November. We'll never know if it was due to lack of meds or not but has taken a turn for the worse - manic episodes - high anxiety. So we are now back on it. You probably already know about the weight gain with Risperdol. Our son had put on 30 lbs but dropped it quickly when taken off. I would say our son fits primarily OCD but there could be more to the story. Yes you are right that is a loaded question with a 20 year old. Of course many of the moms/dads here have younger children and whether that makes it easier or not I don't know. But a head strong 6 ft 190 lb boy doesn't always follow instructions. We try to use as much organic food as possible. I juice from time to time. Free Range meets, etc. We've always tried to eat this way. None of our children were vaccinated either. He isn't in college, he was but when this problem hit, it hit hard and he isn't able to work or get back into school. It's so sad. We just don't know when it will run it's course. It very well may be that other factors are contributing along with the Immune/Strep/Pandas issues. Thanks and God Bless you also.

Hi Faith, The only antibiotics that were given to him was when his tonsils were removed. I wish I had asked more questions at the time why are we not trying them. I just don't know why. Our doctor was really focused on his neurotransmitters and was trying to get them in the optimum range along with oils, aminos and vitamins. Dr. Mary Reed had sent me excerpts from her book "Stressed OUT" and she attributes thin myelin sheathing as a common denominator of people who suffer from any number of conditions. http://www.ocd-free.org/product/STRESS-111 My wife has heard/read about the benefits of tumeric but am not aware of curcumin. Our problem really looks to be complex and who knows where it will lead. I agree and everything I've read puts tics in the autoimmune problem area whether its PANDAS related or not. Good Luck

I am new and hope this post is done properly. Our son began showing anxiety problems, forgetfulness, and in general becoming withdrawn and it hit a peak point when he was 18. We initially considered environmental factors and tested for mold, heavy metals and did some detox all at an Environmental Health Center in Dallas. Mold didn't seem to be a problem, had typical seasonal allergies, but did show signs of heavy metals including aluminum. After several weeks of this we then sought and found a psychiatrist who wanted to do lab work including urine and blood test. Urine test would show neurotransmitter levels which were high and low across the board and the blood work came back with DNASE-B Antibody 480 H titer and Anti-Streptolysin O titers at 394 H. Our psychiatrist immediately sent us to a ENT for a throat culture and it came back negative. Psychiatrist then said regardless of negative throat culture he wanted tonsils removed even though ENT was hesitant. After procedure the ENT came into the Day Surgery Waiting Room to tell us it was a good thing the Psychiatrist persisted as the tonsils were in the 1% worst shape he had ever seen. Procedure done at age 19. It was at that time we heard for the first time PANDAS from our Psychiatrist. We finally had a name and something to work on. Many of the PANDAS symptoms seemed to fit (clinginess, frequent urination, bedtime rituals, age regression). He became withdrawn from all friends and wouldn't leave our house. Over time all of this improved and he started to contact friends. I believe his old friends began to detect something had changed and thus haven't stayed in contact although many have gone off to college. Our son recently turned 20 and is still fighting this thing. He has had some OCD symptoms (locking doors which has subsided) and lately it has been whistling. His behavior can be quite normal especially when guest are over but to immediate family it can vary quite a bit. There have been occasions where he seemed somewhat psychotic and has been on small amounts of Risperdol. He was taken off this the past few months because of improvement. For many months we have sent new urine specimens to the lab in order to watch Neourotransmitter levels. Our doctor has adjusted his intake of amino acids to try and get neurotransmitters in the optimum range. The fluctuation continues from high to low, although we do see normal ranges for periods. In addition he takes many different vitamins and oils. Also we give him a anti-strep antibodies shot twice week. Just recently I contacted Dr. Mary Reed from www.ocd-free.org and she has suggested he has a thin myelin sheathing and how this needs to be nourished. We will increase considerably Evening Primrose Oil, Super Omega 3 Oil, Chinese Stress Relief (Herb for Nervous System), and Liver Cleanse. With the wealth of knowledge out there I'm hoping someone can offer advice or otherwise comment on our struggles. Thanks