bmom Posted May 6, 2010 Report Share Posted May 6, 2010 Those of you who have tics as a symptom with PANDAS, do the tics change or are they the same tics all the time? My sons tics have recently picked up again (I think allergies are the culprit) and they are changing every few weeks or sooner. They are moving all around! Just when I think I have settled one down, in another comes into our lives..... Link to comment Share on other sites More sharing options...
lismom Posted May 6, 2010 Report Share Posted May 6, 2010 Those of you who have tics as a symptom with PANDAS, do the tics change or are they the same tics all the time? My sons tics have recently picked up again (I think allergies are the culprit) and they are changing every few weeks or sooner. They are moving all around! Just when I think I have settled one down, in another comes into our lives..... Tics with us do migrate although lately because of allergies they have gone to the eyes. An occasional roll and brow lift and his scalp seems to have the ability to move. Some day I hope to never see another tic. but compared to some I think he is mild. I decided to give allegra a try because the other medicines made the tics worse and his doctor said allegra is the only one that doesn't cross the blood brain barrier. Just so you know we are also on zith and topamax. Kathy Link to comment Share on other sites More sharing options...
melanie Posted May 6, 2010 Report Share Posted May 6, 2010 Those of you who have tics as a symptom with PANDAS, do the tics change or are they the same tics all the time? My sons tics have recently picked up again (I think allergies are the culprit) and they are changing every few weeks or sooner. They are moving all around! Just when I think I have settled one down, in another comes into our lives..... Hi B Mom' Danny has always changed his tics.We knew when one went away a new one would show.Its weird he never had 2 at the same time .He has had many when one went a new one wasnt far behind.It wasnt untill the verbal tics showed up when we realized it wasnt tourettes but pandas syndrome. Melanie Link to comment Share on other sites More sharing options...
bmom Posted May 6, 2010 Author Report Share Posted May 6, 2010 Thank you! I have tried Benedryl and Clariton, both with negative reactions. Please let me know how the Allegra goes. We currently have eye blinking. This one seems to be one of the usual ones that comes and goes. His eyes do look a little red. Not really any other symptoms to speak of like sneezing or stuffy nose like he usually gets. We are on Azith and have done IVIG and t and a. Hoping one day to be over it! Link to comment Share on other sites More sharing options...
momofgirls Posted May 6, 2010 Report Share Posted May 6, 2010 Bmom Can you tell us who your doctor is and how long ago did you do ivig? What are they telling you? I think my daughter has some seasonal allergies too and have been trying benedry at night. Link to comment Share on other sites More sharing options...
simplygina Posted May 6, 2010 Report Share Posted May 6, 2010 Those of you who have tics as a symptom with PANDAS, do the tics change or are they the same tics all the time? My sons tics have recently picked up again (I think allergies are the culprit) and they are changing every few weeks or sooner. They are moving all around! Just when I think I have settled one down, in another comes into our lives..... DS definitely has several different tics that he seems to cycle through. He often has two going at the same time, though they are still relatively mild and most people don't notice them. With his last exacerbation I knew things were headed south quickly when he started doing pretty much every tic we've seen all at the same time. He's got a neck tic going right now that is bugging him, though is better than it was last week while his brother was sick. Link to comment Share on other sites More sharing options...
bmom Posted May 7, 2010 Author Report Share Posted May 7, 2010 We did IVIG over a year and a half ago with Dr. K. He said that he likes to get rid of all the symptoms if possible and if things get bad enough, we will do another IVIG. It was out of pocket $10,000 for us last year and will be more as he has gained some weight if we do it again. Things are not bad and so we are the wait and see mode. I am also consulting with Dr. T and have a phone consult with him tomorrow to go over blood tests. Link to comment Share on other sites More sharing options...
P_Mom Posted May 7, 2010 Report Share Posted May 7, 2010 BMom, They change just like in TS. Link to comment Share on other sites More sharing options...
simplygina Posted May 7, 2010 Report Share Posted May 7, 2010 We did IVIG over a year and a half ago with Dr. K. He said that he likes to get rid of all the symptoms if possible and if things get bad enough, we will do another IVIG. It was out of pocket $10,000 for us last year and will be more as he has gained some weight if we do it again. Things are not bad and so we are the wait and see mode. I am also consulting with Dr. T and have a phone consult with him tomorrow to go over blood tests. That's what I was afraid of. I hate having to decide medical decisions based on money! Link to comment Share on other sites More sharing options...
Recommended Posts
Create an account or sign in to comment
You need to be a member in order to leave a comment
Create an account
Sign up for a new account in our community. It's easy!
Register a new accountSign in
Already have an account? Sign in here.
Sign In Now