Hi everyone,
So sorry I didn't blog yesterday to tell you how Jessica is doing. The internet was down in the hospital and the one thing you learn while you are here, is that things are slower or what we americans that are here call - "mexican time" vs. "american time".
Jessica had another difficult day yesterday. Her body is still trying to eliminate or expel the medication that she received that was too much for her body to metabolize. Her neurologist is very knowledgeable and I would need many paragraphs to explain the problem, but let me just say that every body receives medications in different ways. Medicines are transported in the body thru different avenues and sometimes, when you receive too much of one, or the combination of different ones, they can have very adverse effects on the body! This is what happened in Jessica's case. This does not happen to everyone and there are many different factors that can alter this; every persons body is different!
What I have learned is this: Research the medications you are on, find out how and in which way they are metabolized and excreted thru the body. Ask your pharmacist and doctor about interactions whenever a new med is added. And remember, you are your best advocate because you know your body better than anyone! Ask questions, it's O.K. - better to be safe than sorry - !!! And always expect the unexpected!!!
Keep praying for Jessica's body to flush out the remaining meds and for the underlying symptoms to go away!!!
With much appreciation,
Jessica's Mom
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ALSO: Tomorrows blog will contain information as to upcoming fundraising events that are happening in Naples, Fl. and Garden City, N.Y. I will be listing them tomorrow as well as thanking the special people that are "behind-the-scenes" who have been working tirelessly in Jessica's behalf!!! Look for this info in the next blog!!!
GOD BLESS YOU ALL!!!
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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!
Jessica’s Story
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.
Jessica and her sisters, 2 mos. before becoming illThe 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 painful skin lesionsJessica'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.
Jessica, age 15, at summer campFour 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.
July 2003, Jessica's Lyme disease rashDuring 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.
Jessica getting into the air-ambulance to go see Dr. KirkpatrickUpon 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!
5 comments:
my prayers are truly with you. God continue to give you strength and courage. God Bless
Dear Jessica and Gina,
During the night I could not sleep and I kept praying for you. There was some kind of bright light as I lay there, eye closed, praying for you. I know God is with you.
Today at a nutrition meeting I learned that you must share all meds, prescribed and over the counter, including herbal teas with the doctor. Know your body and share it with the doctor. All vitamins, and St. john's wort etc. should be written down and shared with the doctor each visit.
Gina, I know that your wonderful sharing will help many people. You are a sensational writer and I know when this is over you will use those talents to continue to help many.
I hope that both of you have a peaceful, restful night.
Each day I remember more and more things that we shared together. Jessica do you remember all those nights at my kitchen counter doing the "fun" algebra take home tests?
love to you both
Linda in Saratoga
looking forward to the fundraiser information.
Gin and Jessica,
God is holding you both in his hands and will keep you there as long as it takes. We love you and are praying for you every day. Gina, Keep us informed about the fundraisers. Love Bonnie
Hi Sarah Gina and Jessica, wishing you a wonderful restful night of sleep and rejuvenation! Each day will bring you closer to pain free and unfold new miracles!
Love Nancy & Jose' and Mr. Tinker
Hi
My name is Brian. I had RSD for 14 years and then I had treadment that in 2 months the pain was gone, there was no side effects. If you want to no more you can call me at 239 404 2232. And try to have a great day.
Can relate
Brian
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