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Jessika's story: "Live life…uninterrupted!"
By Laura Bortolusso-Welch

We live on the tiny twin island republic of Trinidad & Tobago at the very bottom of the chain of Caribbean islands. Many people have never heard of this country, but recently we gained worldwide recognition for our participation in the FIFA world cup tournament. It is not a first world country, not a whole lot of week-end choices for entertainment, the pace of life here is slow and so, happily, here we live.

Our Jessika (left) is a vivacious, bright, talented 11-year old. She has always excelled in everything and every sport she participated in. So telling her story is difficult, but it has a very happy ending and we have learned that one of the most important things in this incredibly challenging journey is to maintain a positive outlook, count your blessings, smile and create that happy ending.Jessika began experiencing extreme pain on March 7th 2006 after an hour and a half of regular training at her swim club. By the following morning she was unable to walk.

On May 8, 2006 - two months and several doctors later, we traveled to Florida and sought medical advice from a colleague of my sister who is herself a pediatrician in Jamaica. She was diagnosed with CRPS stage 2 type 1 on May 10 by a pediatric rheumatologist in Tamarac, FL. Jessika's CRPS was brought about by a pre-existing medical condition that we were never even aware of. She has pauciarticular Juvenile Rheumatoid Arthritis (JRA). Her affected joints are her left ankle and her right knee. Dr. Lawrence believes that Jessika may have had JRA for some time, but due to her athleticism it had gone undiagnosed. Her JRA seemed mild and the more urgent situation was the identification and aggressive treatment of the CRPS.

We returned to Trinidad the day after her diagnosis with a clear understanding of what we needed to do. But we had no idea where to begin. Within two hours of being home I was on the Internet doing as much research as possible on CRPS. What I read frightened me and I thought that we would never be able to conquer this medical condition on these shores. The very next day I was on the phone to all of Jessika's doctors. Of the four doctors that had seen Jessika in Trinidad—two pediatricians, an orthopedic surgeon and a rheumatologist—not one of them had ever seen CRPS in a child. Jessika's orthopedic surgeon, who is a family friend, comforted me and reassured me that this was something we were very able to triumph over. He set up appointments for us to see a pain specialist (who thankfully had seen this in children before) and a physiotherapist who had never seen CRPS in a child before, but had in fact worked with CRPS patients.

Physiotherapy

Weeks of intense physiotherapy included (some of which continue to date):

1. Hot pedicure bath every morning and evening. We included soothing peppermint oil and epsom salts.
2. Desensitization exercises starting with using a large make up brush to dust over the foot for as long as an hour. Up to 3 times a day. The coarseness of the bristles increased every week until a nylon bath scrubber was used.
3. Pouring raw rice over her foot into a large basin - 30 / 40 minutes. Twice a day.
4. Formal physiotherapy 3 times a week for 1 ½ hours. Including TENS and heat.
5. ALL exercises done at Physiotherapy we did twice a day. This included - stretches, scrubbing a face towel on a tiled surface with her left foot. Picking up marbles of all sizes with her left foot/toes and returning them to a container. Approximately 70 marbles. In the beginning Jessika could barely do 8 marbles in 10 minuets. Now she can pick up 3 and 4 at a time!
6. Hydrotherapy with a therapist at a pool once a week for 1 ½ hrs.
7. Jessika got into a pool everyday for at least 1 hour but more often than not for 2 to 3 hours.
8. Stationary bike for half an hour.

Pain management

Jessika was put on gabapentin 100mg - 3 times a day, amitriptylene 12.5mg - 3 times per day, and Cataflam® (diclofenac potassium tablets) 25mg - 3 times a day.

And additionally… lots and lots of positive thinking.

Today, she is 90% better - she put away her crutches on June 24, 2006. On July 12 all of her pain medication (with the exception of the cataflam, which she continues for her JRA) were stopped - but let the picture at left paint a thousand words.

These photos were taken on July 8. On this day Jessika stood on her hydro slide and did her very first 360!

Jessika believes in herself and her motto is "Live life …uninterrupted!"

We want as many people as possible to know about Jessika because we believe it may be of great comfort for parents or relatives of children suffering from this condition, who either don't live in or near to big cities, don't have "top-of-the-line" medical services readily available or who feel that because they do not have these resources they are less likely to be successful in dealing with this medical condition. Let our Jessika's story give you hope. Trinidad is a very small island with limited resources, but that did not hamper our daughter's fantastic recovery. Don't be negative - look at each day positively. Enjoy every moment of recovery and get on with the business of healing!

Things we noted along the way

It is documented that stress and anxiety are contributing factors to the onset of CRPS. Hindsight has shown this to be a major contributor to our daughter's situation. In Trinidad we have an exam that is done by 11/12 year olds that determine where they attend high school. It is a very difficult exam and creates huge amount of stress in many children throughout the country. Jessika has a textbook "type A" personality and although her academic performance has always kept her in the top 5 of her class, the stress of this exam proved to be too much for our daughter.

The heartbreaking part is that she endured terrible pain throughout her preparation for, and during the exam itself which was April 6, 2006. Remember she was not diagnosed until May 10. We did all we could to alleviate the stress of this horrid exam short of not allowing her to sit it. Sadly only perception after the fact is 20/20.

With a huge lump in my throat I will say that she excelled in the exam and will begin the high school of her choice in September.

Jessika is under the care of a wonderful Clinical Psychologist to help her manage her stress and learn coping skills to help her with anxious times. She will continue to participate in as many sports and extracurricular activities as she chooses. This will also help her to manage her JRA.

Dealing with CRPS in tiny Trinidad has confirmed that very often, necessity is mother of invention! But it is do-able. We did it! We would love to give back and help others.

Any questions or comments may be forwarded to Laura at mwelch@tstt.net.tt