My Story

[Evol]

Hello. I just wanted to share my story since so many other stories here have helped me, if nothing more than to not feel alone. Tic disorders run on both my husband's and my side of the family. Everyone has very mild symptoms, except me...I got TS. Lucky me! I had a typical nose tic or two starting at age seven until age 14 when it developed into TS. I battled Strep Throat plus constant ear infections my whole childhood so I believe there is both a genetic component as well as possible PANDAS/PANS. My symptoms were at its worse in high school and college. I think stress had a large part in it all. I'm 38 and still have what I would consider to be mild/moderate TS. The decision to even have children was tough. I knew we could pass on the gene to our children but the pull to have my own family won. So when my oldest daughter started having a tic at age 4 1/2 I was devastated, paranoid, and panicky. That's when I started doing research. I tried to eliminate as much artificial stuff as I could and gave her a good multivitamin. Her tics were very mild. Mainly in the nose and an occasional "look down" with her eyes. We went on a trip together and her nose tic was worse than ever and I realized she drank a lot of milk on that trip so we removed it and saw an immediate improvement! It was quite amazing. She has had next to no symptoms other than an occasional mild waxing phase. She is 12 now. I know I'm not out of the woods since I was 14 when things got worse for me, though. My son is almost 9 and I almost keep waiting for the shoe to drop with him. He has eczema and so sometimes I can't tell if his skin is sensitive and bothering him or if it is a tic. His mouth is particularly bothersome when it is dry out (stretching). He does not display a typical tic "look" at this point. My youngest daughter had a brief nose tic at age 6 that lasted a month. A year later its back, only not as simple of course. She does this "thing" where she squeezes or clenches her whole body. She says she has to "squeeze her butt cheeks" (pardon the bluntness) but it doesn't feel right. One night she couldn't fall asleep it was so bad. She was lying in our bed clenching her whole body while arching her back...I was terrified that this was way more than tics. That was the worse night but she still does it occasionally, mainly at night. Sometimes she just says the words "butt cheeks". She also has other issues that may complex things; rage, anxiety, opposition, and complained of a stomach as long as I can remember. I've started her on a probiotic, which really seems to have helped the stomach aches, a good multivitamin, and am trying to remove dairy but is proving difficult since she is so oppositional. She has been constantly ill this season so I'm sure that is playing into it. With her I fear it will not be a simple path for us. Of course there's the guilt that I created this but dwelling on that won't help things. Sorry for the long post; I hope this helps give insight for some people or just to be able to read another family's story is helpful. It has been for me.