What's the difference in Tourettes and PANDAS? What test can dr. d

[tylermom]

My oldest ds was dx with TS at 2.5 years old and my 6 year old ds was dx with a tic disorder at 4 year old. I have wondered for along time if both kids have PANDAS. My oldest is 11 y/o and will be 12 April. He still has tics but the OCD seems to have got better. My 6 year old hasn't had a motor tic in over a year but has severe OCD. I do think my 6 year old has coprolalia. He will say inappropriate phrases which has to do with potty talk (fart, poop, etc.) he will scream this out at his kindergarten friends when i'm picking him up at after school. He says these things at inappropriate times and has even told me he wishes he could stop it but his brain tells him to say it. So it sounds like a vocal tic to me. My oldest ds's tics started on Oct. 23, 2001. He was 19 months old. He had been to a family reunion in a rural area that day with my inlaws and 2 hrs after he came home his eyes started rapidly blinking and his head was jerking. It was clearly a tic. 10 years later he will still get these same tics. He had never been dx'd with strep throat at that time. He did have illness in his 18 months of life. Lots of ear infections, RSV at 9 months old, stomach virus' and common colds. He also started having OCD symptoms like lining up toys, books, etc. Freaking out if the toys were moved and having severe temper tantrums that could last for hours. I've researched about Lyme's since he had been in a wooded area right before the tics/OCD started. He has never had a tick seize up on his skin. So I really do not think it's Lyme's. I can't really recall a date when my 6 year olds tics/OCD started. I do know that when my 6 y/o ds was 4 months old he had his first documented strep throat infection. At that time I had 3 kids and all three tested positive for strep. My dd who is 19 months younger than my oldest had strep throat so much that she had to get her tonsils out at 7 years old. So both boys have been around strep a lot. Also, my niece and nephew whom my children are with all the time also have had lots of strep infections and my nephew had kawasaki disease 5 years ago. From what I've read about that it has something to do with with strep. My niece also has a tic. 2 years ago she suddenly developed a coughing tic along with a head jerk. She's went to dr. and dr. and had so many test, chest xrays, etc. She also has severe anxiety and OCD. The dr. says it's a tic from anxiety. I feel like she probably has PANDAS as well. I'm at my wits end and want to find out whats wrong with both my boys. Both struggle in school. I actually had to homeschool my oldest one for 2 years due to academic issues in school. He can't write and was dx with visual perception problem and has severe math problems. He wanted to go back to school this past august and it's been a train wreck. He's having tics, rages, failing everything. He does not have rages at school only at home. My 6 year old is failing kindergarten. I work with him daily and he can't retain the info that he learns. My oldest has this same issue with retaining info. Both boys are behavior problems at home. They scream at one another constantly, fight one another, etc. This is not your normal sibling rivalry. I want answers. Please if you all can let me know what lab work that I could ask the pediatrician to do for my boys I would appreciate it. Their dr. has suspected PANDAS but has not actually done blood work for it. He just wanted to send them to TExas children's hosp. to get tested. It takes 1/2 year to get into dr.'s at TCH. I want answers now. Thanks and sorry this is so long.

 

Jennifer

Edited February 1, 2012 by tylermom

[nicklemama]

Its sounds like all three of your children have PANDAS. I am afraid to say that the best way for you to get to the bottom of it is to consult with a doctor who is an expert in PANDAS. If your pediatrician is willing to work with one of the doctors, I'd recommend having a phone consult with Dr Trifiletti. He will order the bloodwork and make recommendations and you can work with your local pediatrician. There is also a list of doctors who are familiar with PANDAS in the pinned section at the top of this board. They are listed by state. If you find one listed in your area, you can then inquire about them and their knowledge. I wouldn't wait the 6 months for Texas Childrens.

 

Most of us here have to travel great distances to see the experts. Unfortunately, there just aren't that many doctors qualified to treat PANDAS out there.

 

www.pandasfoundation.org probably has the most up to date doctor listing by state. Be aware that just because a doctor is listed there does not guarantee they are an expert.

Edited February 1, 2012 by nicklemama