mkur

I don't have a fix but here are a few things that help my DS. First, all teen boys are eating machines. Every teen boy I know is constantly parked in front of the frig with the doors open and searching for something. This drives most moms crazy. I gave up on eating all meals at mealtime - tried but this is not a battle I can win. I make a plate and put it in the frig. This is not how my DH and I were raised but you do what have to do (thank you Dr. Greene). My son is also a picky eater when pandas is flaring. I also make meals just for him. DS goes thr stages - he likes to eat one thing everyday until he is burned out on it. My son likes chicken pot pie on and off. So I make it and put it into individual glass bowls (less mess) and put them in the frig so he can microwave them. I also make chili and divide it up. I have trouble getting him to eat enough protein so we do protein powders added to shakes. DS also has a gag reaction sometimes and shakes go down easier with a straw. When I was pregnant, I became very very sensitive to smells. I would get sick from different smells - severe headache a/o vomit. The only safe foods for me were cheese pizza and apples. I could only take my vitamins with the pizza. I dumped a couple of friends who kept telling me it was only in my head. When you are repeatedly woken up at 4am to vomit, it is not in your head. This could have been a training period for me to help me deal with DS. If it is not OCD, texture or smell of the food, I would ask your son to do an elimination diet to rule out any food allergies. This is a cheap cheap test-free. Done at home. Maybe if he had to follow a diet it would help - is he good with lists? I don't have a copy of it but the diabetes society has a great diet. I flunked the sugar test when I was pregnant so the dr put me on this diet. They gave me a chart with number of calories going across and meals/food groups going down. The chart was filled with the required amount of food needed. I was put on the max of 2000 calories. I could not eat all the food listed. Another good thing about this diet is the list of free foods - vegs - things you should eat lots of. This diet tells you the minimum amount of food you must eat to stay healthy - calories needed and how to maintain constant sugar level. There are also other diets for athletes who are trying to maintain a constant energy/sugar level. Maybe someone in cyberspace can pm you a copy? Your son needs to understand that his brain is mainly fat and his body needs fats. My DS first ped would tell me to fed him lots of fats. There are lots of articles about good fats - olive, coconut oil etc. I would see a gastro dr. Good luck and if you find a solution please share it with us.

I watched this video from austismone conference that was interesting and maybe helpful: http://www.ustream.tv/recorded/15045777

Thanks

Ten years ago, I delayed vaccines (age 4-7) for younger non-pandas son because his ped felt he was a high risk for problems like autism. His speech was very delayed and his older brother had pandas. The doctor filled out the form and wrote a letter. I think you need to find a doctor who knows the system. I cannot help you in nj but I do understand. Hope you find an answer. Good luck.

This will keep me busy for a while. Lots of good info. Thanks!

I saw this on DrOz show and it sounded helpful. Something else to try. This is for those who have tried melatonin for sleep and it does put you to sleep fast but doesn't prevent you from waking up during the night. They said this drink is a slow release of tryptophan unlike the melatonin pills and will keep you asleep. Pumpkin Seed Powder for Insomnia Grind 1 / 2 cup pumpkin seeds into a powder and mix with 1 / 2 cup low-fat milk , 1 tablespoon honey. The released tryptophan promotes sleep. *I wonder if peanuts will work since one of the moms recommends peanut butter to calm her son.

Double post - received error msg so posted again - oops....

I don't care what you call it - just tell me what the problem is and fix it. I've been dealing with this for a long time 12+yrs. I know there is a problem which is why I am here. Keep researching and get a new treatment plan. I hope this new plan will "fix" things. Anyhow, I hope you understand why I am glad you are finding some answers. Keep looking.

I don't think this article closes the door on autistic's kids immune system causing autism and find the above stmts very interesting. There could be scaring from infection a/o changes in the expression of their genes etc. I've read where epilepsy is a disease that can begin with an event and then progresses slowly with each seizure - physical brain changes. Thanks for posting.

We never tried the steriods so I can't offer any information. Wishing you another improved day. Hang in there.

Dr B wrote a script to test titers for each member of our family. We went to the lab to draw blood. Mine and non pandas son were elevated so our family doctor put us all on axb. My husband had explained that our pandas son would be having IVIG and we needed to eliminate all strep. We treated the dog too.

Another article about the gut and a dopamine neuro disease: Ulcer Bacteria May Contribute to Development of Parkinson's Disease http://www.sciencedaily.com/releases/2011/05/110522141547.htm

Dr B took care of the insurance for us. We didn't have to do anything except pay for the deductible.

OCD: Compulsions Lead to Obsessions, Not the Other Way Around http://www.sciencedaily.com/releases/2011/05/110523101915.htm

I agree. I would do abx before surgery just in case. I know a boy who developed severe TS/ODD after having his tonsils removed. I think he is pandas and gave his parents the info.

I had my younger non Pandas son's tonsils removed when he was 3 years and 11 months old. No problems. Would do it again. He doesn't remember it. I was told that the biggest risk is bleeding when the scab falls off.

Bump .... Thanks for posting!

Wishing you another positive day!!!!!

Thanks for the information. I think we will skip this herb for now. My son has high titers.

Dr Oz did a segment on tonsils Friday 5/13/2011. He mentioned using astragalus to help prevent strep infections. Anybody used this? He said that more adults are getting their tonsils out because they weren't removed as children.

When my son is having trouble his sleep is affected. I used to give him clondine at night to get him to sleep so that he could attend school. Since he has started pandas treatment, I just let it run its course. It's rough but he will get back to his norm - 12 hrs 1am-1pm. He's always been a long sleeper - 12 hours - except when sick. I think you need to find a doctor and then a hospital. I would call NIH and get Swedo's opinion for a panda's psy. I called and they gave me a couple of names of Panda's doctors and a couple were psys. I didn't use them and decided to go to an immunologist instead because of insurance and because we have been to too many psys and neuros. I'm seeing some improvement - waxing and waning - and am still hopeful. Hope things calm down and you find an answer.

http://www.sciencedaily.com/releases/2011/05/110517110315.htm

Thanks for posting everyone. This is really interesting. It is amazing how these parasites can take control (directly or indirectly) of the host's body.

I agree with EAMom totally. I have a friend from Brooklyn and she told me that in her neighborhood you were either Irish or Italian. Huge Irish population. They are very lucky to have Dr Schulman.

I can feel your pain and I'm so sorry. I think you should keep up the steroids otherwise you'll never know and will be doubting yourself forever. Whatif? My son has these seizures/panic-attacks/movementdisorder/whatever-you-want-to-call-it (long story) Last 2010 mother's day weekend they hit him every 15-30 mins 24/7, and he was suffering. I took him to the ER and they wrote a prescription for Diazepam (Valium) to help him until Tues neuro appt and for increase in Keppra to take effect (it takes 3 days). It really calmed him down so that he could rest and conserve his energy. He'll lose 20 lbs in a week and he is already slim. I give him WHATEVER he wants to eat - don't care because I know he needs the calories. He loves fast food because I restrict it but there comes a point where you know they just need calories. Icecream a/o protein milkshakes etc. He uses a straw - goes down easier. Hang in there. I hope you find an answer soon.