Personal HFS History - Kelsey Hildal

Finding the HFSA web site about a year ago has been a Godsend. I won't go into all the details but I will start by saying that we live in Cincinnati, Ohio and the neurology group at our Children's Hospital Medical Center (a very well respected medical facility) has not seen HFS before. I encouraged Kelsey's pediatric neurologist, who is a movement disorder specialist, to confer with Dr. Tew who is a well-respected neurologist in town and also a member of this group's Medical Advisory Board (MAB). That got things moving.

At the same time that I was working with the doctors here in Cincinnati, I was soaking up all the info you folks were passing back and forth. I digested every morsel of info on our HFS web site as well. I was then able to provide additional info during discussions with and between the doctors and they were pleased to receive the input. As all good doctors do, those working with Kelsey have eagerly tackled this challenge -- they love learning about new issues and working through them.

We pursued Botox® for Kelsey as a first step. There was no one in the city that had experience giving Botox® treatments to a child's face. Finally, Kelsey's neurologist, Dr. Gilbert, conferred with a doctor in the Pediatric Rehab unit at Children's - Dr. Kinnett. Dr. Kinnett gives Botox® treatments all the time but to large muscle groups in children with Cerebral Palsy; he had no experience with Botox® to the face but got himself prepared to do so.

Meanwhile, Kelsey wanted no part of this. At the same time, she is starting to cover the left/HFS side of her face with her hand. Our once happy-go-lucky little girl chose not to smile -- she chose to be outwardly emotionless. For her, by the fact that she was sending no messages to her brain, the spasms were greatly reduced. You see, early on it seemed that her spasms were the direct effect of Kelsey's telling her brain to smile, laugh, cry, etc. However, 12 months into this ordeal the spasms began to take on a life of their own and Kelsey could no longer "control" them. Kelsey is a bright child, in the gifted program at school. We were finally able to garner her acceptance of this diagnosis and her cooperative participation in her treatment by appealing to the young scientist in her. She now thinks it's cool to be the only kid in the city (there are others, to be sure, but none who have found the help we've been lucky to find) dealing with this. Dr. Gilbert has asked her to meet with some of the residents at Children's so they can document her case. She's excited about this aspect of this dreadful ailment.

Kelsey had Botox® back in June - eye area was good. The mouth area was awful -- she looked like a stroke victim. BUT, she liked not feeling the twitches and spasms. Also, this minimized the funny stares she got from others and fewer questions about her face from her peers.

Now to the most important point -- dear Jack O'Donnell gave me just the push I needed. The doctors working with us encouraged us to treat the problem and not just the symptoms. At Kelsey's age, they didn't want her to spend years experimenting with Botox® and fighting this condition. We were encouraged to seek a nationally recognized expert. I sent e-mails to several of the doctors on the advisory board then grew impatient when I didn't get an immediate response.

Enter Jack. I asked Jack via an e-mail for help and he contacted Dr. Jannetta's office. The very next day I spoke with Dr. J's assisting nurse and then Dr. J called me. I was sitting at lunch in a busy restaurant in downtown Cincinnati when my cell phone rang. I suspected it was a call from school saying that either Kelsey or her twin sister was ill. But no -- it was Dr. Jannetta!!! I think he was more concerned about calming down this frantic mom than he was worried about Kelsey - he knew he could help her if given the chance!

Well, we're with a local Humana HMO, which offers no out-of-network coverage. However, the medial review doctor from the HMO did his research -- much of it was my documentation thanks to this site -- as well as conversations with the doctors at Children's and I assume Dr. J (or his office) and Dr. Tew here in Cincinnati. He realized that there was not a solution for her in Cincinnati so Kelsey has been approved for surgery with full coverage just as if we were going to a local doctor.

Dr. J prefers that the surgery take place at least 9 months after the last Botox® treatment (in Kelsey's case her treatment was the first, last and only) so we're scheduled to be in Pittsburgh March 20, 2002, for the consultation with Dr. J and surgery scheduled for the next day. We've not yet told Kelsey about the surgery. She is a bit of a worrier so we're holding off for a while. However, her face is beginning to "spaz" as she was due for Botox® about several weeks ago. I'm sure she'll ask soon about when the next Botox® is scheduled and we'll lay all the cards on the table.

As those of you who have made the decision to have MVD surgery know, it's a big, big decision. My husband and I are feeling the weight of making this decision for Kelsey - the "what ifs" are killing us. But, we believe this is the best solution and we're praying the good Lord will see her through this.

Special thanks to Jack and to all who work hard to keep the web site vital, the flow of information going and the inspiring words of encouragement. When I finish this e-mail, my next task will be to balance my checkbook and send a donation in care of Gary Twing. Well....I may not balance my checkbook - what a waste of time. But, Gary, rest assured, the check won't bounce!

I send my best regards to all of you.

 

UPDATE AS OF 10/12/06

Kelsey had her MVD with Dr. Jannetta on 03/21/02 and was immediately, and remains, "SPASM FREE".

Permission granted the HFSA to post Personal HFS History on website.
Robyn Hildal - Kelsey's Mom, November 20, 2001

 

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