COMPLEX PARTIAL SEIZURES AND OCCUPATIONAL THERAPY?????

Shannon - posted on 03/02/2009 ( 5 moms have responded )

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MY 9 YEAR OLD SON HAS COMPLEX PARTIAL SEIZURES AND HAS HAD THEM SINCE HE WAS 6. HE DOESN'T HAVE THEM AS OFTEN AS OTHERS BUT WHEN HE DOES, HE'S USUALLY UNCONSIOUS FOR OVER AN HOUR. HIS LAST MAJOR SEIZURE THEY HAD TO GIVE HIM DIASTAT TO PULL HIM OUT OF HIS SEIZURE AND HE WAS OUT FOR 2 1/2 HOURS. HE STILL CANNOT TIE HIS SHOES, RIDE A BIKE AND SO ON. HIS GRADES ARE SLIPPING IN SCHOOL AND HE'S STARTING TO GET BEHIND. I CURRENTLY HAVE HIM IN TUTORING. BUT MY QUESTION IS, THE DOCTORS WANT TO START HIM IN OCCUPATIONAL THERAPY TO TRY TO HELP HIM. HAS ANYONE ELSE EVER HAD THIS TYPE OF THERAPY? WHAT IS IT AND DOES IT HELP? I'M SCARED TO DEATH AND PRAY THAT HE DOESN'T HAVE ANY BRAIN DAMAGE. MY SON STARTS THIS THERAPY THIS WEDNESDAY AND I HAVE NO IDEA WHAT WE'RE GETTING INTO. BUT I WILL DO ANYTHING TO HELP MY SON. ANY ADVICE WILL SURELY HELP AND BE GREATLY APPRECIATED. THANKS.

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Amanda - posted on 04/04/2009

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Hi, I'm a little late joining, but wanted to add my two cents for you. My daughter (15mos) also has partial complex sz, tho' to a MUCH lesser extent. Her left arm was completely limp after 2 mos of uncontrolled szs. Once we found meds that worked, she regained some use of that arm, but it was well behind the other. The ped.neur. recommended OT and they have helped her tremendously! (OT=smaller muscle control, fine motor, daily living skills; PT=larger muscle control, gross motor) The OT or OTAssitant works with her and shows us things to do to help her gain strength & coordination in that side of her body (turns out more than just the arm was affected, lots of connected muscles etc.). For her, they do all the "normal" baby developmental stuff: stacking things, pincer grasp, smashing toys together, as well as reaching for things far away, lifting her arm straight over her head. She just thinks they are playing rather than "working". So, from a mom with a little experience and a former special education teacher, the OT should be a good and helpful experience for your son and your family. If not, see if you can get another referral. Also, if it helps to know, you can be with him or observe from nearby. Don't be afraid to ask them questions!!

Shannon - posted on 03/04/2009

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WE'VE TRIED EVERY MEDICINE UNDER THE SUN. HE'S ALLERGIC TO TRILIPITAL. HE BREAKS OUT IN HIVES FROM IT. HE IS CURRENTLY ON DEPAKOTE, WHICH SEEMS TO BE WORKING GOOD. HIS SEIZURES ARE FEW AND FAR BETWEEN WHICH I AM SO GRATEFUL FOR.  THANKS TO EVERYONE FOR ALL THE ADVICE. IT IS VERY HELPFUL.

Katie - posted on 03/04/2009

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To add on to Drewin's message, OT can also help people become more aware of their entire body and how it works in space. Sometimes OT work involves sensory issues too, like deep tissue pressure and joint compressions. These don't hurt at all, my son who is 3 loves them. They help him calm down when he is getting a bit wound up and seem to center him. The sensory piece can also involve things like weighted blankets or vests to help kids focus for more difficult tasks (schoolwork, etc.). In general OT will help your son with self-care, fine motor skills and overall bodily awareness. Good luck at your appointment. Can I ask you what meds your son takes? My kiddo has complex partial seizures and we just took him off Trileptal and are adding Topamax in addition to the Keppra he is also taking. He will have longer seizures about once every 4-6 weeks as well.



Thanks,



Katie

Drewin - posted on 03/03/2009

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OT is a type of therapy that will re-teach him the basics of day to day life. Things we take for granted like tying your shoes, zipping a zipper etc. They really focus on fine motor skills and hand-eye coordination. At his first appointment they will likely assess him, play games that will tell the therapist what they need to work on. My daughter has been in OT for about 6 years now (she is almost 11) and it has has done wonders for her. They are helping her now with printing and keeping letters on the line and in proportion. They even helped her with her drawing. It is very non invasive, they don't need to poke him or anything. If anything he will find it fun! If you are concerned about what is happening at the sessions, sometimes they will have a room you can go to to watch that has a one way mirror (you can see and hear them, they can't see or hear you). If that isn't available, go into the room with him. Take it if they are offering it!! It may be an idea to see about physical therapy too. We also were in that (same situation with the bike) and her balance improved alot too. Take what ever therapy they are willing to offer....the sooner you start rehabilitating the sooner you will see improvements! Good luck, hope this helped a little!

Donna - posted on 03/03/2009

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Hang in there.. the therapy will be a good thing. I have two daughters with seizure disorders.. I am thankful.. they are adults with careers and starting families of their own.

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