My name is Cindy, and my daughter Paige was diagnosed with Tourette’s in the fall of 2009.\u00a0 At that time Paige was 8, and for a few years we had suspected that something was a little off.\u00a0 From the beginning she had to fight for life as she was almost a miscarriage\u00a0because of\u00a0low progesterone during pregnancy.<\/p>\n
Fortunately, we caught it early enough and I carried her full term.\u00a0The delivery was another challenge.\u00a0 With each contraction,\u00a0her heartbeat would crash and the nurse did not think it was really happening but a faulty monitor.\u00a0 I was rushed down for an emergency C-section, and when the doctor arrived they found out she was crashing with each contraction and would not descend because the umbilical cord was around her neck.<\/p>\n
What an entry!\u00a0\u00a0Nobody told me of any problems during delivery, but there was panic everywhere.\u00a0 After a while her apgar score improved and things tried to fall into place.\u00a0\u00a0As new parents, we did not know when something was a problem or just different.\u00a0 She would not breast feed;\u00a0she was delayed in her milestones of rolling, crawling,\u00a0walking and riding a bicycle.\u00a0\u00a0She never really had great balance.\u00a0 We just figured she was clumsy or not paying attention.<\/p>\n
At about\u00a06, I took her to a specialist in\u00a0because she had a gait in her walk and when running.\u00a0\u00a0He told me that he believes she suffered a stroke during delivery and that is why she did not breast feed or meet her physical milestones.<\/p>\n
I was crushed.\u00a0 How could no one tell me something like that and I find out years later?\u00a0 I do as he recommends — as much physical activity as possible.\u00a0 We joined dance, soccer, softball, basketball — you name it, we kept her active.<\/p>\n
In addition to the physical signs, there were a few emotional signs as well.\u00a0 She was colicky as a young infant.\u00a0 She would get frustrated easily with activities, especially coloring.\u00a0 When school came about she would have a hard time starting and completing things, she could not sit still for very long and she could not keep quiet.\u00a0 She was just my social butterfly happy to be with people.<\/p>\n
By first grade, she complained of pain in her neck.\u00a0 We had her checked everywhere.\u00a0\u00a0MRIs, X-rays, doctor after doctor.\u00a0 One thought it was PANDAS; another, arthritis.\u00a0 Then one said she has\u00a0“tics,” and after a year of many tics and vocal noises she was diagnosed with Tourette’s.<\/p>\n
Finally, something to call it.\u00a0 The learning began.\u00a0 We joined the Rutgers Family Group.\u00a0 We learned a lot and met kids just like Paige.\u00a0 It has helped.<\/p>\n
Today we seem to struggle the most with each new school year.\u00a0 Will the teacher be nice, will the kids tease her for her “tics,” will she stay under the radar, or will her “tics” go crazy as we get closer to puberty?<\/p>\n
It is painstaking to see her move and be uncomfortable and in pain.\u00a0 She is a trooper and she does not complain but the stress and the challenges stare her in the face\u00a0day after day.\u00a0 We take her to counseling and we keep her involved with dance and soccer to build her confidence.\u00a0 We surround ourselves with loving friends.<\/p>\n
I think it would be nice to befriend a family who also deals with Tourette’s, where the kids could play and the parents can share war stories.\u00a0 Paige liked meeting the girls we\u00a0met at Rutgers but we were unable to keep in touch.\u00a0 Surrounding yourself with those who understand is a good way to cope.<\/p>\n