Friday, August 7, 2009

Jessica's Story

Jessica's Journey to Getting Her Life Back
By Sarah Gina (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 called RSD or Reflex Sympathetic Dystrophy. 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 – May 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 ill

The pain she feels is indescribable and all attempted treatments have not even come close to relieving her suffering. She has seen many, many doctors, undergone numerous painful tests and procedures, has been prescribed over 50 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. She describes the pain in her legs as if someone is pouring acid over them and her head pain as if she has banged it against a concrete wall! 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 lesions

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 underwent physical therapy and the RSD went into remission. She returned to playing sports and enjoying her life.

Jessica, age 15, at summer camp

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 doctor and nurse at camp said it was “duck rash” – a rash from swimming in the lake with duck feces. Through Jessica’s sheer determination she was able to obtain photos taken of her at the 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 rash

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.

Jessica getting into the air-ambulance to go see Dr. Kirkpatrick

Dr. Kirkpatrick then explained that there are currently three kinds of ketamine treatments for RSD: the awake technique (continuous low dosage for 4-5 days), outpatient high-dose infusion (4 hours a day for 3 days), and the coma technique (continuous high dosage for 5 days).

Upon his testing and because Jessica's RSD is full body and so severe, Dr. Kirkpatrick is recommending the only treatment available that can possibly put her in remission 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 for five days, with the hope that her brain will “reset” itself 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 you, 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!



46 comments:

Michelle said...

hey wessie,
how are u doing? good i hope i already miss you very much. i loveeeeeeeeeeeeee your website its so pretty. jessica you will be fine during the ketamine coma i think i am the first to comment on ur web. just think of God and pray ...dont pray for more than 15 minutes but dont go more than 15 minutes without praying that means pray all day long and also talk to God and tell him how you fell. nothing will happen to you! i love you!!!!!!!!!!!!!!!!!!!!
............................love mini wessie

daddy said...

Hi Honey,

You are so brave and courageous. So many people are praying for you.

Good Luck

Daddy

Anonymous said...

Praying for you.

honker said...

hey jess!

i love you soooo much...you will be fine no matter how this all turns out. i will love you always, stay strong youre such an inspiration and i can only hope to one day be as brave, beautiful, persistent as you are.

love katherine (your #1 sis)

uncle vinnie said...

dear jessica,this the continuation of your journey to a place that only you will be able to understand has sent a message to everyone in this complicated world that we live in that with the hope, desire and determination that you poses will one day return you back to us the wonderful person you have always been only with no pain and suffering so and the rest of your journey can be realized. In the coming weeks with your blog everyone will get to know exactly what kind of person you are and will certainly begin to understand where you have been and exactly where you are going and with your MOM close by your side and with all the love of your immediate family and friends close to your heart we applaud your courage and await your return.....
love uncle vinnie and aunt judy

Silvia Knoploch said...

Jessica, I wish you and your mother a safe trip to Mexico and sincerely hope that you will return home improved and ready to start your rehabilitation. Dr. Silvia Knoploch

Marianne Caparrelli said...

Jessica,
We continue to be in awe of your strength and determination. Thank you for posting this blog so we can follow your journey. Not a day goes by that we don't think of you and pray for your recovery. Please send our love to the rest of your family.
Lots of Love, Marianne. Rob, Daniel, Matt & Kristina

Anonymous said...

Dear Stevens Family,
I am the pastor of the church that your neighbor's daughter attends in South Windsor, CT. We have had Jessica on our prayer chain quite a number of times. I now join all of you in praying for the Lord Jesus' miracle for Jessica as she undergoes this radical treatment in Mexico. May our Lord go before you and prepare every step of the way for you and may He grant Jessica a full healing. Pleae remember, Jessica, that Jesus holds you in His hands and that nothing, absolutely nothing, can take you out of His hands. I will be following your blog with great interest.
Jerry

Love, Cousin Regina and the Nielsen Family xoxoxox said...

Hi Jessica!

This website is beautiful! Jessica, please know that we are all with you each and every step of this journey. We believe that God embraces you and loves you very much! What a very courageous and determined soul you are! There are many, many people all over the world praying for you and your family right now and we are wishing all of you PEACE!

Anonymous said...

wow, what a sad story. I will be praying that this experimental treatment works for jessica. God bless!

Anonymous said...

Get well soon

Aunt Carol said...
This comment has been removed by a blog administrator.
Aunt Carol said...

Dear Jessica
Your strength and determination has enabled you to get this far. Keep fighting will all your might. I know, in my heart, that this procedure is going to be the turning point. Keep your dream alive about becoming a doctor one day. I will be the proudest aunt to say..."That's my niece, Dr. Stevens." Know that I will be thinking of you each an d every day..and praying for your speedy recovery and return home. Love you always..Aunt Carol

Angel said...

Dear Jessica, Your faith and courage have been an inspiration to us all. I am keeping you and your beautiful family in my prayers every day. I have faith that the Lord is with you on every step of this road, and that you will be an amazing doctor one day! Hang in there! Love always, Angel

Rita MacDonald said...

Hi Jessica,
We are long time friends to the Caparellis and my daughter has RSD. I am fervently praying for you. Since hearing your story you have been on my heart and I just wanted to send you my love at this time.

In Christ,
Rita MacDonald

Anonymous said...

Dear Jessica:

Sorry I was unable to see you before you left for Florida. Dr. Neugarten, Dr. David and I wish you the best of luck with your treatment in Mexico. We are looking forward to helping you once you return to Long Island. We will keep you in our thoughts and in our prayers. - Dr. Epstein

Aunt Carol said...

There are only a few more days before you and mom leave for Mexico. It is Monday night and I am thinking and praying that you and mom will find the answers we need to this illness. I will also pray that Dr. Cantu finds the experrtise abd the ability to help you through each day until you can come home. We love you....we will be with you each day. Love you Jessica ..Love Aunt Carol

Sandra Guzman said...

Hi Jessica & Gina...this website is the most beautiful and moving one I've ever read, literally, my jaw is still on the floor...your journey is incredible...we are praying for you and love you very very much!!! Sandra

Melinda said...

Good luck to you and your family . God Bless you

Anonymous said...

Toni Jakubowski
Dearest Jessica God's faithful servant and your strong and loving family....I hope you can "feel" God's grace, mercy, and healing, as you read this. I hope all the prayers that are going out for you will lift your spirits and hearts in a very powerful and peace-filled way. I learned of you and your story from a friend of yours through and e mail. I pray all of God's healing power on you! Thank you for such an amazing testimony. A prayer warrior, Toni

Anonymous said...

what a devoted mother you are, i'm so impressed. as a spiritual person i know that you and jessica are on the right path. i stumbled upon this by accident tonight, researching some of my own ongoing symptoms with r.s.d., which has pretty much taken over my life from the time of my early thirties. i have several doctors who treat me, a pain specialist to keep me sane (thankfully the narcotics still work to a point), a neurologist who's one of the best, and..listen to me carefully now because every case is different but this helped me in a way in which i know prayers were answered..a cardiologist who is also an electro physiologist.

i know that i was on the verge of a new existence before the latter started me on a medication which is contraversial for this disease. however, it changed my life dramatically. i could hardly walk, eat, had vision problems, agonizing stomach pain, felt assaulted with axes, crushed nearly to death, lost balance.. and of course the burning is part of it too, etc,etc, etc.

there was disagreement between my neurologist and cardiologist in my starting beta blockers, risky with rsd. but trust me, i was not safe prior to taking them, had to get up every five minutes to adjust the heat, for instance, (when i could)nearly falling down the stairs many times. one night a terrible pain led to almost complete loss of vision and feeling in my extremities, i had to concentrate to crawl to the phone and struggled with what little control i had in order to dial 911. thank God!!..that event may have inspired my cardio. to take the risk..and since that time i can eat (not alot of warm foods, but some), have better balance in general with cane, which i've used all along (wheelchair when out at times), and in combination with my ketamine (hate side effects) and other meds i'd describe my condition as being much more stable. in fact i've had 10 pain only a few times since.

i'm not saying that my circulatory dysfunction (neurocardiogenic syncope) is what's creating all of jessica's problems or even my own, but in my case it is a huge factor which took my symptoms to indescribable levels. beta blockers changed my life..i still struggle but not nearly as much. they are usually not recommended with rsd. in my case, they were essential, so this is one type of specialist you might need to see, to weigh out the risks and benefits.

God bless..get some sleep..your daughter needs you at your best;)..say hello to her for me. i understand at least alot of what she's going through, and here i am typing on a laptop, as bright as it is, and my hand doesn't even hurt;)(with full body rsd)If it helps you sleep any, her relationship with God will probably be closer when you leave her for the night to rest in His palm, and go off to do the same. i will keep your family and all who suffer in my prayers. keep hope;)

it will bew ok..follow every lead..

Anonymous said...

Hi Jessica,
I saw this link through facebook and decided to take a look.
Good luck with your new treatment and I hope you get better soon. You have a long life ahead of you and may God give you the strength and courage to fight through the pain. Keep your head up and remember that even strangers are praying for you. :)

Anonymous said...

Dear Jessica and Gina,
I know I cannot understand the pain you both are bearing, especially Jessica, but I want you to know that you are now in my prayers. After hearing your story, I wanted to cry. I am always complaining about this and that, but when I read about you, all that I complain about is nothing compared to what you are going through right now. I will always be thinking about you and keep you in my prayers.
Love, M.C.-A Lutheran Church of the Resurrection churchgoer.

Anonymous said...

This is for the Stevens family,
I just recently found out about Jessica's story, and I cannot express how I am feeling in words. I am praying for you. To Michelle- Please know that I am feeling for you. It must be hard to be away from your sister and mother while they are in Mexico. Pray and believe, and everything will be okay.
- Someone who cares:)

Anonymous said...

This is for the Stevens family,
I just recently found out about Jessica's story, and I cannot express how I am feeling in words. I am praying for you. To Michelle- Please know that I am feeling for you. It must be hard to be away from your sister and mother while they are in Mexico. Pray and believe, and everything will be okay.
- Someone who cares:)

Joyce said...

Jessica, I suffer from Late stage chronic Lyme and Bartonella. I have been extremely disabled, but after reading your powerful and inspiring story, I feel blessed. Please hang tough, God is with you and I will keep you in my prayers. I also asked my Priest to pray for you as well and we will keep you and your family close to our hearts. Peace, Love and Prayers,
Joyce xoxo

Natalie said...

Jessica!!!
You are an inspiration. Stay strong and hopefully God will help both of us to beat this terrible illness. I am 28 and have pretty much full body. I am able to do things, but need to take multiple breaks and no one understands the pain..... I am testing to do Low Dose Ketamine with Dr. S or Dr. Kirkpatrick. It is hard to be sick when we are sooo young and were very active. I will follow your journey and I wish you the very best. You are in my thoughts and prayers....
Natalie

Stacy Nelson said...

Hi Jessica,
So happy the treatment worked! My mother in law asked me to contact you after seeing you on the news. She suffers from RSD and wants me to give you a message. DO you have an email? Mine is nels4487@bellsouth.net
thank you!
Stacy Nelson

Geraldine Chloe said...

Hi Jessica!

Happened to chance upon this blog. Hello from Singapore :) I just wanted to tell you to be strong and that God will never abandon us. We sometimes never understand God's purpose but keep faith that God's purpose is always good and our ultimate purpose is to bring glory to His name. I will be praying for you and I really hope you recover! I want to be a doctor and I hope we can both be doctors together :) GOD BLESS YOU AND YOUR FAMILY, ALWAYS.

Geraldine
geraldine177@gmail.com

Anonymous said...

I hope and pray that you and your family will not avoid alternative treatments and nutrition. God gave you an incredible body that has the ability to heal itself if you give it what it needs to heal. Stay strong. God Bless!

http://www.youtube.com/watch?v=aS3K9bhO6Fk

http://neurologicalsolutions.org/hyperbaric-oxygen-therapy/reflex-sympathetic-dystrophy

http://www.rsds.org/4/stories/alternative_therapy.html

http://www.earthclinic.com/CURES/reflex_sympathetic_dystrophy.html

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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 ill

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 painful skin lesions

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.

Jessica, age 15, at summer camp

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.

July 2003, Jessica's Lyme disease rash

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.

Jessica getting into the air-ambulance to go see Dr. Kirkpatrick

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!