Meet

Caitlin Hoel

CURRENT MEDICAL/SEIZURES/MEDICINES

My seizures have been much improved since starting sabril (vigabatrin) in November 2004. My seizures are mainly upon waking or falling asleep. I have startle seizures that are brought on by a loud or surprise noise or even by bumping into something. The seizure type I have are infantile spasms or myclonic is what they call them since I am older. I occasionally will have a drop seizure and those really scare my mom especially if I am up and walking around. The medication I am currently taking is Sabril (vigabatrin) Zonegran and lamictal for my seizures. If I have a excessive seizure first we try swiping my VNS and then use a klonopin wafer. If it’s a really bad seizure we use diastat. I started puberty at age 13 and my mom and Dr. thought putting me on birthcontrol for my period and hormone control was my best option. I am on Levora birthcontrol and only have my period every 84 days or once a season. I have also struggled with constipation all my life so I am on a daily dose of miralax.
On September 9th 2002 I was implanted with the vagus nerve stimulator at Phoenix Children’s hospital. Six months prior to my VNS being implanted a MRI revealed that my arachnoid cyst had grown and it was so large it was pushing on my cerebellum. This was causing me to lose my balance while walking and I was falling and being more clumsy than normal. My mom was very concerned and one of my therapists at school assured mom that he thought Caitlin was just being lazy. My mother’s instinct told me different and I insisted they do a MRI before doing the VNS implant. We went to see the neuro-surgeon and brought the MRI for him to take a look. The neuro-surgeon told me it was a good thing I had insisted on the MRI and was so persistent because he then told me my suspicions were confirmed and the reason her balance was off was because her cyst was so large and it was pushing against Caitlin’s cerebellum. The Dr. would have to place a VP shunt to drain the cyst before he could even consider doing the VNS implant. Dr. Aicardi himself even told us when he examined Caitlin at age 2 that Caitlin’s arachnoid cyst would never grow so their was no need to place a shunt. Caitlin’s neurologist had told us the same thing when she was diagnosed at 9 months. In all fairness to these 2 wonderful Dr.’s that is the case most of the time but as you all know Aicardi syndrome is so unique from case to case. Once the shunt was put in place her cyst completely drained. On Jan. 8th 2004 Caitlin started having continuous drop seizures at school so we rushed her to Phoenix Children’s hospital for a CT scan. The scan revealed that the VP shunt (which was only in less than 2 years) had become disconnected and the tubing was all coiled up in Caitlin’s stomach. Caitlin was then taken into surgery and they completely repaired her shunt with new and improved tubing. During this time Caitlin’s cyst had grown back. We are hopeful with the new shunt the cyst has remained drained. Caitlin’s shunt will always stay in place for this reason.

MY FAVORITE THINGS

One of my very favorite things is water and swimming. In July 2002 my family took a cruise and I had a chance to swim with Picasso the dolphin. I also love to ride horses and started in a therapeutic horse program in Missouri when I was on;y 18 months old. This is before I started walking at 2 1/2 years old and the horses gave me so much movement. In May of 2001 my family moved to Arizona for my dads job (Southwest Airlines) and during the 6 years we lived there I did hippotherapy and aqua-therapy with Ms. Jann at the Therapy Zone. I am back in a hippotherapy program in Missouri at Therapeutic horsemanship where I first started riding. I am currently not in a aqua-therapy program and really miss our pool in Arizona but mom takes me swimming to our club where they have 4 pools! I can swim year round. Music is still at the top of my list for favorites and I do private music therapy at home in addition to school.

MY LEAST FAVORITE THINGS

I hate having my face washed or hair brushed! I have become much more tolerant with age but mom says brushing my teeth is like playing tackle football!

TOYS I FIND STIMULATING

I like cause and effect toys. Anything with lights,music or vibration interest me. I love to feel different textures. I like using the computer or switches when their are fun or musical programs.

Therapies I receive through my IEP at School
OT,PT,SLP,Adaptive PE,MUSIC THERAPY
Private therapies
hippotherapy,music therapy,aqua therapy

I CURRENTLY ATTEND THIS SCHOOL

I go to Marquette High School in the Rockwood school district. I am in Mr. Jacoby’s function life skills class. I also enjoy going with MS. K. to my inclusion classes as well as seeing all my peers at school. I love my school and their are so many wonderful people who work with me and support me during the school day. Thank-you!!!!

I WOULD ALSO LIKE TO ADD

I live in Wildwood,Missouri with my mom, Tracy and my dad Bill. My older sister Megan goes to the University of Mississippi (OLE” MISS) in Oxford MS. it is 5 1/2 hours south of our home. I am so proud of my sister as she works so hard in everything she does!!!!My younger brother Sean will be in high school next year like me! He will go to Lafayette HS which is our home HS but it’s not far. My sister and brother are the best and I am so lucky to be right in the middle. I also have a dog named Max. Max is a Maltese born Valentines Day 2004. We got Max when we lived in Arizona so he never saw snow until we moved back to MO. My dad works for Southwest Airlines and it makes it fun to travel. I am a veteran to airplanes as I was only a few months old the first time I boarded a SWA flight. My mom works to be my voice and advocate and calls me her angel or Kitty Cat my nickname. I will be turning 18 May 15, 2009. I have met so many of my Aicardi sisters and my Aicardi brother David and feel very fortunate to have been to all of our family conferences. I look forward to meeting all our new families! Please feel free to contact us anytime! Love, Caitlin and Family

Leave a Reply

Your email address will not be published. Required fields are marked *

Scroll to Top