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Mother believes girl’s TS started with complications before, after birth

My name is Cindy, and my daughter Paige was diagnosed with Tourette’s in the fall of 2009.  At that time Paige was 8, and for a few years we had suspected that something was a little off.  From the beginning she had to fight for life as she was almost a miscarriage because of low progesterone during pregnancy.

Fortunately, we caught it early enough and I carried her full term. The delivery was another challenge.  With each contraction, her heartbeat would crash and the nurse did not think it was really happening but a faulty monitor.  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.

What an entry!  Nobody told me of any problems during delivery, but there was panic everywhere.  After a while her apgar score improved and things tried to fall into place.  As new parents, we did not know when something was a problem or just different.  She would not breast feed; she was delayed in her milestones of rolling, crawling, walking and riding a bicycle.  She never really had great balance.  We just figured she was clumsy or not paying attention.

At about 6, I took her to a specialist in because she had a gait in her walk and when running.  He 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.

I was crushed.  How could no one tell me something like that and I find out years later?  I do as he recommends — as much physical activity as possible.  We joined dance, soccer, softball, basketball — you name it, we kept her active.

In addition to the physical signs, there were a few emotional signs as well.  She was colicky as a young infant.  She would get frustrated easily with activities, especially coloring.  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.  She was just my social butterfly happy to be with people.

By first grade, she complained of pain in her neck.  We had her checked everywhere.  MRIs, X-rays, doctor after doctor.  One thought it was PANDAS; another, arthritis.  Then one said she has “tics,” and after a year of many tics and vocal noises she was diagnosed with Tourette’s.

Finally, something to call it.  The learning began.  We joined the Rutgers Family Group.  We learned a lot and met kids just like Paige.  It has helped.

Today we seem to struggle the most with each new school year.  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?

It is painstaking to see her move and be uncomfortable and in pain.  She is a trooper and she does not complain but the stress and the challenges stare her in the face day after day.  We take her to counseling and we keep her involved with dance and soccer to build her confidence.  We surround ourselves with loving friends.

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.  Paige liked meeting the girls we met at Rutgers but we were unable to keep in touch.  Surrounding yourself with those who understand is a good way to cope.

4 Comments

  1. I had a very similar experience. My pregnancy with my third child was normal but his heartbeat would also crash with each contraction and he was born with the umbilical cord around his neck. I had to drop colostrum into his mouth and he eventually fed in time to not need serious interventions, but he went on to be devlopmentally delayed in most areas and to have learning disabilities–similar things to what you describe. Some of it is commonly seen alongside TS, however (anxiety, ADHD…). Although conditions before and after birth may have contributed to his development of TS, I can’t really see it that way, as my husband and two older children, along with other undiagnosed extended family members, have Tic Disorders. For me, the questions are more centered around what caused his delays and learning problems. Nobody has ever suggested oxygen deprivation during the birth, but I have to wonder…. Hugs to you, Cindy.

    • As time goes by the wondering about ‘how’ fades as ‘what now’ comes into play. When reading about all of the other things that may come our way we fear for the worse case and hope for the best. I think this site will help me learn how to prepare and help when things come into our lives. Thanks all.

      • Hi Cindy,

        I noticed you mentioned Rutgers. Are you in NJ? We are a part of NJCTS and, like you, it is hard to find people to stay in touch with that are local. My son is 12 and if I figured right, Paige is about the sam age, yes?
        It is difficult to deal with in general on a daily basis but to have friends to talk with and get together with is true therapy!!

        • Hi Lynn,

          Yes we are in NJ. We did the family Rutgers program about 2 years ago and I plan on going to the support group scheduled on Dec 1st in Denville. I would love for Paige to befriend someone with occasional visits or email buddies with kids who can relate to their day. Paige is 11 in Feb and in 5th grade. Would you like to meet at the support group or if you go to another one in NJ I am willing to travel.
          Thanks!

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