coachadamb

Jill, My apologies I did not mean to confuse you or anyone else. 1st, with regards to brain damage, I stated that it was my opinion, and that is based on personal experience, that if inflammation is left untreated it will cause damage I did not mean to imply that PANDAS causes brain damage and I am truly sorry if parents took it that way. 2nd. You are exactlly correct in the auto-immune process, you have done your home work well. I should have used the medical terms correctly instead of referring to one of the bacteri that can start the whole process. I did not mean to miss lead anyone. I have heard good things about Dr K. and Dr K. in Chicago, Fortunately Dr. Chugani was the only one that would take Nathan on as a patient. The inflammation in the right frontal lobe and the Basal ganglia is the worst he has ever seen. I have read many articles and spoken to several researchers and will continue to meet and speak with them. I can't wait untill there papers are published. We are going to find that this disease encompasses every area of modern medicine from the endocrinologist, immuniologist to neurology, psychology and homeopathology. I like to call it one universe for our kids..Where else can you get every facet of medicine working together for the greater good for our cuildren. Jill thank you for the good wishes for nathan, i will keep everyone posted on the outcome of the treatments. Adam

PhillyPA, Dr. Chugani is an amazing Doctor but more than that he is an amazing person. His giving and compassion for our children is evident in every area of his life. Dr. C will actually sit and talk with you inviting your questions and answering them honestly. In Nathans case, the pet scan showed the worse inflammation he has seen to date. Dr. C has done approximately 32 pet scans for pandas kids of which 1500 dollars comes out of his pocket for each test. Dr. C honestly doesnt know to what extent nathan will heal. In his professional opinion and based on success with past therapies, IVIG is nathans best course of action for any chance of recovery. With regards to radiation exposure. It is far less than the radiation exposure you get with having a cardiac stress test. The isotope used in the stress test can stay in the body for up to thirty days, where as the tracer used by Dr. C is made after you arrive for the test because it is only usefull for a matter of a couple of hours. The trade off to find out what is causing Nathans spiral is worth 55 minutes of exposure. You are correct Philly is that PANDAS in Theory does not cause permanent brain damage and it may never cause it, and I think i may have implied in my earlier post that it did, and I will correct myself publically; however I know first hand that if an inflammation is left untreated it will begin to cause damage and I think thats where I confused the readers. I believe Nathan first showed signs of PANDAS at around age 6. He had and continues to have bouts with strep. An er doctor diagnosed him about 5 years ago. The doctor was a young doctor and had seen 1 case during his residency, but it went no further than a dose of atavan for the "tics". 2 years later in another hospital er he was again confirmed with PANDAS, and again sent home after a dose of atavan. Thus my quest into the world of PANDAS and most recently the relationship with Dr. Chugani and his team. Philly, if you have a PANDAS child I would encourage you to seek his help or become involved in his research, the outcome will help our children all over the world. Adam

Amber, Dehydration can be an issue with IVIG treatments. I don't know what kind of IVIG she is receiving but lots of water, electrolites and the possibility of infusing with saline to help with the hydration, consult with your Dr. Adam

Just some thoughts to ponder, As was stated in an earlier reply, we are really on the forefront of something much larger than any of us really know. Myself, I have an 18 year old who is being treated in Detroit by Dr. Chugani. I know that through Nathans PET scan his right frontal lobe and the complete right side of the Basal Ganglia are inflammed extensivly. It is my opnion that had Nathan been diagnossed at a much younger age perhaps the symptoms would not be so life altering. As with any inflammation, left untreated especially in the brain, there will come a time when it begins to cause damage probably within the inflammation itself. Parkensons Diesease is caused by degeneration of the Basal Ganglia. Could our kids PANDAS be a precurser to this diesease if the Pandas is left untreated??? The brain will heal by removing the bacteria, its just a matter of time and without further exposure to the bacteria during the healing process. My appologies for the spelling!!! The inflammation is so bad that my son has developed tics and tremors simular to parkensons. He will have IVIG treatments next week...a hope and a lot of prayer. This brings me to my second point. The wide range in the ages of kids that have symptoms. Time will tell as studies are released but there seems to be a direct corolation between symptoms, or what seem to be stages of symptoms, and the ages of children. PANDAS caught early perhaps treatments seem to be not so invasive? easier to maintain? Where as our kids that have lived with it longer say late teens early adulthood, without treatment are having a diffucult time with treatments and or maintaining. One thing we have to remember is that the frontal lobe and the Basal ganglia share the same protein as the strep bacteria. Thus a safe and easy place to hide once its in the blood stream. So when the body releasses antibodies to fight the bacteria one of two things are going to happen. one, its going to attack the bacteria and the part of the brain its attached to or, it not going to attack anything because it recognizes it as the brain. Eljomom, you are not wacko, Its questions like yours that keep researchers busy getting answers, and answers are comming. So keep asking and insisting on answers. Adam

Quinny, was wondering if you could share some of the doctors you have seen that are willing to treat PANDAS. My son now 18 will not be seen by any pediatric doctors, and he is at his wits end. coachadamb

We live in West Michigan. My son, now 18 was diagnosed with PANDAS in 2006. What started as a tic has progressed into a constant tremor to his left side, the tics now give him a momentary loss of function, memory and thought. I have exhausted all avenues except here. He needs help and needs it now. He is becoming withdrawn and today he walked 4 miles home from school because he can't take the lack of concentration, the tremor and the tics in class. He is a senior in High school who is having such a hard time. I can give more information upon request. I thank you in advance for your response. Coachadamb