Sorry I didn't blog yesterday, but it turned out to be one of those days. As you know, Jessica's vision, or static vision/visual snow, is still really bad and very worrisome. The specialized test was finally performed yesterday. It was an evoked potentials test on her eyes. Because of her extreme light sensitivity, they had to perform the test under semi-sedation. The test involves putting electrical stimulators on different parts of the brain and then having her wear special goggles that emitted various different lights into her eyes! If Jessica was fully awake, this test could not be performed. Even under sedation and really not aware of what she was saying, she still voiced the fact that the lights were too bright and that she had a severe headache, as well as it was not comfortable at all! The test results will be interpreted by the specialist and hopefully we will know if the problem lies in the eyes or in the brain. Also, the tests that were done a few days ago on her intestines because of the pain she was experiencing, detected that along with her gastroparesis, she sometimes has a condition called reverse peristalsis, in that, at times, her intestines push food upward instead of downwards and it is this that is causing her nausea and sometimes vomiting to occur. They are putting her on a motility medication and a highly specialized liquid feeding in her J-tube to see if this alleviates those symptoms. Please continue to keep her in your prayers. I will keep you all posted as to the eye test results. Also, we still cannot resume the ketamine boosters, which are crucial, until we know whats going on with her eyes!
Also, yesterday, I had one of those days where I wasn't feeling well myself. You see, through all these past 4 years, God has been tremendously good to me in keeping me healthy to take care of Jessica, and my husband who has Crohn's disease, as well as my other two daughters, and I am so grateful for that! But, yesterday, I stepped out of the "safe" box and apparently ate some Mexican food which did not agree with me and .....well....you know the rest of the story....and so, between Jessica's tests and my problem, there was no blog yesterday! Sometimes you live and learn, as my father used to say! I will not eat that again!
Hope you are all well and we thank you all for your prayers and concerns for us here in Mexico. God is good - he sees you through the good days and the bad days and sometimes - he "carries" you as well.
Remember - the Will of God will never take you where the Grace of God will not protect you!!!
Also - on a happy note - a fellow coma patient - Justin Brown from Pennsylvania, will be leaving the hospital today!! He has been here 2 1/2 months and it was his dad Rick and mom Joan, who were so helpful to me when Jessica and I first got here on August 20th. We will miss them, but are so happy for Justin to be able to return home and try to continue his road to recovery. He will do it - he's a fighter - as are all the people that have to deal with this terrible sickness called RSD!!! Good luck to Justin and his family. (remember the "Ice Pops")
All my love and Jessica's too,
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Jessica's Journey to Getting Her Life Back
By Sarah Gina (Jessica's Mom)
As we begin this journey toward renewed health we would like to express our sincere heartfelt thanks and appreciation to Dr. Anthony Kirkpatrick and all the work he has done and continues to do in order to bring patients like my daughter Jessica back to a more meaningful life and restored from this devastating illness. Also, special thanks to Dr. Fernando Cantu and his team of doctors in Mexico for taking on a difficult case like my daughters, Words cannot express the renewed sense of hope that we have that one day, our Jessica, can regain her life that has been taken away from her – God Bless you all!
Once an A+ student who loved school, was involved in many extracurricular activities, played varsity tennis, lacrosse and gymnastics and enjoyed spending time with her family and friends, our daughter Jessica has spent the last 3 years incapacitated, paralyzed, unable to sit or walk and eat. She spends her days confined to a hospital bed, wearing sunglasses and noise-canceling headphones, due to severe light and sound sensitivity.
The pain she feels is indescribable and all attempted treatments have not even come close to relieving her suffering.
She has seen many doctors, undergone numerous painful tests and procedures, has been prescribed various medications, and has been hospitalized frequently including being intubated and on a ventilator. She is severely debilitated and currently is only 92 pounds. This is certainly no life for a 21 year old young woman!
Jessica is suffering from neurologic Lyme disease and Reflex Sympathetic Dystrophy (RSD), a severely debilitating and painful neuromuscular disorder. She suffers daily with constant sharp, stabbing, tingling and burning pain; throughout her body; severe headaches; paralysis; intense muscle spasms; gastroparesis; seizures; twisting of her limbs (dystonia); sensitivity to any touch (allodynia); extreme sensitivity to lights and sounds; excessive sweating; swelling; fevers; softening of bones; decreased hair growth; redness and discoloration of the limbs; and painful skin ulcers. The pain is constant and unrelenting, but despite her suffering, her faith in God remains and she still has hope for her future.
Jessica's journey began in 1999, when she was only 11 years old. She became very ill with Mono and was bed bound for 3 months. She subsequently developed RSD (stage 1) of the lower right leg. She received early intervention and returned to playing sports and enjoying her life.
Four years later, in 2003, while away at a sleep-away camp, she developed a rash behind her right knee, coincidentally in the same leg that previously had RSD!
At the time, the camps nurse & doctor told her that it was “duck rash” – a rash from swimming in the lake with duck feces. However, Jessica was able to obtain photos from camp from another camper which shows the classic “bulls-eye” rash from Lyme disease! It wasn’t until much later and only after developing symptoms and becoming very ill, was the diagnosis of Lyme disease and Babesiosis (another tick-borne infection) made.
Most people (and doctors!) have no idea how serious Lyme disease can become and no clue how to properly diagnose it. Unfortunately, if she would have been promptly diagnosed and treated for Lyme disease, the RSD would not have been triggered and she would not be suffering.
If it wasn’t for her doctor, Dr. Liegner, and his expertise with complex cases of Lyme, and his determination to try any means in getting her well, by getting a “team” of doctors on her case, we wouldn’t be here today, still fighting. We owe him a deep sense of gratitude for all he does for Jessica!
During these past three years and with the pain becoming more intense and unbearable she has been seeing Dr. Finkelstein for pain management. He has even made house calls to spare her the pain of coming by ambulance to his office. Jessica has been treated with multiple pain medications, at the highest possible doses, as well as an implanted dilaudid pain pump, which delivers potent medication straight into her spine. Many doctors have told us that with the amount of medications Jessica was taking would be enough to “kill a horse”—yet they had little to no effect on her. If it wasn’t for Dr. Finkelstein trying to alleviate her constant, severe, unrelenting pain, I don’t know how she would have managed. He is very special to us as well.
Recently Jessica was transported by air ambulance to Tampa, Florida to see Dr. Anthony Kirkpatrick, a world renowned RSD expert. Dr. Kirkpatrick told us that Jessica is one of the most debilitated patients he has ever seen.
Upon his testing and because Jessica's condition is so severe, Dr. Kirkpatrick is recommending the only treatment available that can possibly help relieve her suffering, and afford her some semblance of a “normal” life - the Ketamine Coma Procedure - a clinical trial that is being conducted in Monterrey, Mexico.
During this procedure Jessica will be put into a coma , with the hope that her nerves, brain and spinal cord will “reset” -so that her nervous system sends the correct signals to her brain.
Yes, this is a radical, scary treatment, however, for Jessica, "scary" is thinking that she could spend the rest of her life in this condition, unable to walk, eat, or take care of herself. Since all reasonable treatments have failed to help her, we feel we must try everything possible to help Jessica regain her life.
We understand that due to Jessica’s fragile condition, there is a high risk associated with this procedure. We are also aware that other patients with severe RSD like Jessica's have had success.
Jessica’s goal is to one day become a doctor. Our hope is that with this study she can have that chance. As her Mom, I know that she will be a great doctor because when a patient presents in her office and says “Doctor, I am in pain and words cannot express how bad it is” – my daughter –Dr. Jessica– will be able to say - :I know how you feel, I’ve been there too. So, take a seat and let me tell you a story”….
We are so thankful and feel so blessed to have been led to Dr. Kirkpatrick.
God is good and with his help guiding Dr. Cantu and Dr. Kirkpatrick, our hope is for Jessica to be able to return to us whole again and pain-free!