Jessica's Journey: 48,000 Views Of Blog!!!

Saturday, May 1, 2010

48,000 Views Of Blog!!!

Hi To All,

The Month of May is designated as Lyme Disease Awareness Month. This is something that Jessica has been very passionate about. In the beginning of her illness, she created a facebook group dedicated to lyme disease awareness and prevention. This group currently has over 10,000 members! In honor of her commitment to this cause, this month I will be posting different information about lyme disease with each blog post. It is our hope and prayer that with this knowledge, no one need to suffer the devastating effects of lyme disease and its co-infections. May God bless all those who suffer daily with this illness and also bless the doctors who treat them.

Lyme Disease Fact #1:
Lyme disease is transmitted by the bite of a tick, and the disease is prevalent across the United States and throughout the world. Ticks know no borders and respect no boundaries. A patient's county of residence does not accurately reflect his or her Lyme disease risk because people travel, pets travel, and ticks travel. This creates a dynamic situation with many opportunities for exposure to Lyme disease for each individual.

Please visit the following website for more facts and info:
http://www.ilads.org/lyme_disease/about_lyme.html

Update on Jessica:

I'm sorry I haven't posted in a number of days. Jessica had not been feeling well this past week and so changes had to be made in her intrathecal pump medications. It seems that whenever changes have to be made, her body's sympathetic system goes haywire and it then causes a cascade of events to occur. This morning she seems to be on an upswing, so thank God for that. Yesterday Devon & Cathy left to go back home to Connecticut. We also got to meet Blair Webber and his friend George. Blair is a former coma patient from Canada who is back for boosters as well. What a nice man - who has also gone through so much in fighting RSD. He also has lesions on his arm, just like Jessica. He came to our room last night to meet Jessica and he was so encouraged to see how her ulcers were healed, with only the scars left behind visible under the skin. His hope is that the ketamine will help to heal his lesions as well and help to alleviate some of his pain. Please pray for Jessica & Blair and let us praise God always for his amazing love & grace.

Please watch this video - THE PRAYER by Celine Dion & Josh Groban
http://www.youtube.com/watch?v=wEMBR4b9Dng&NR=1

In God's love,
Sarah Gina (Jessica's Mom)*

"I will instruct you and teach you in the way you should go; I will counsel you and watch over you!"
Psalms 32:8

***To Post A Comment, CLICK on Comments Below***

7 comments:

Fern said...: It is nice to see you posting again. A brilliant idea to mark the month of Lyme with Lyme facts! Thanks for that!

Jessica, let's hope the new concoctions bring you relief very soon and that you will be resting more comfortably. I heard the sun was shining over there. Here, it is raining and cold. I look forward to seeing you again soon and share some of that Mexican sun and warmth with you and your mom!

hasta pronto!; May 1, 2010 at 10:12 AM
Anonymous said...: Glad to hear Jessica is on an upswing! We pray she will continue to have a great many better days ahead!

With love & prayers,
The Turners; May 1, 2010 at 11:02 AM
Lynn Losquadro said...: hi gina how is everything this is lynn, im sitting with your beautiful daughter michelle and lisa. i am so glad that jessica is doing better all our prayers are being answered. you are always in our thoughts, you and jessica. Love,
Lynn; May 1, 2010 at 10:16 PM
Anonymous said...: Enjoy!

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

You Shine Brighter than the brightest star ...; May 2, 2010 at 10:15 AM
Pam said...: Sarah,

I have been following your blog since I spent time with you and Devon in Monterrey last fall. I cheered when Jessica's sun glasses came off and again when the noise cancelling headphones came off. I cheered loudly when Jessica moved to the couch. Cathy tells me that there has been a remarkable change in Jessica since I last saw her in October...that she has gained weight, is eating soft foods, is talking conversationally and is upbeat and optimistic. You both have just plowed through the setbacks and ultimately got a solid foothold and gained ground. You are both very strong women whom I so admire. I look forward to hearing and reading more good things.

love, Pam
Devon's aunt from Boston; May 2, 2010 at 10:46 AM
Anonymous said...: Dearest Jessica and Gina, You are truly surrounded by the grace of God today and every day. Although we are all praying for you and sending you positive thoughts and well wishes, it is you that must do the hard work of healing, both physically and emotionally. I can also imagine that some days are easier than others. May God continue each and every day to restore your tremendous commitment to healing and strength to carry on for another day. May He continue to strengthen your faith and trust in Him. May He continue to hold you in the palm of His hand as you work towards restoring your health. I think about you and pray for you every day. Today I was remembering how one day, I visited you, Gina, at your house on Huntington Road. You had just decided to paint your kitchen a couple of days before, and were in the process of turning it into a bright (yellow?) color with a burst of energy and a cheery smile. I also had a good laugh as I remembered the sign in your back yard: Out of my mind, be back in five minutes!! (I did love that one!) Jessica's journey back to health is a challenging one, but you two ladies are meeting it head-on with true grit and determination, good humor and prayer. I and so many more people add my prayers to yours as we continue to STORM HEAVEN on Jessica's behalf. Hang in there!!! Love always, Angel xoxoxoxoxoxoxoxoxoxo; May 2, 2010 at 4:36 PM
Anonymous said...: Hi, What the heck? Sorry, one of these days I will figure out how to post only one blog entry at a time! :) Angel; May 2, 2010 at 4:37 PM

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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!

What is RSD?

Imagine what it would be like to endure a burning sensation so intense that the most potent pain relievers are completely ineffective, leaving you with the feeling that your body is actually on fire...

Reflex Sympathetic Dystrophy (RSD) is a painful & debilitating chronic neurological disorder that occurs when the nervous system malfunctions in response to a injury or illness- in Jessica's case- Lyme disease.

RSD is characterized by: Continuous sharp, stabbing & burning pain; Extreme sensitivity to touch; Severe headaches; Painful skin ulcers; Intense muscle spams; Softening of bones; Dystonia; Skin temperature & color changes; Hair/nail growth changes; Muscle atrophy; Vascular & Autonomic dysfunction; Sensitivity to lights & sounds and Paralysis.

This rare condition is a mystery to scientists & often is misdiagnosed. Much more research is needed to find the cause of RSD and ways to treat and prevent it.

Ketamine Coma Study

The Ketamine Coma Study is a clinical trial procedure being conducted in both Germany and Mexico, that is considered for patients with the most severe, intractable cases, who have exhausted all other reasonable treatment options.

During this procedure, patients are put into a ketamine-induced coma-- essentially shutting the body down & giving it time to "reset" the nerves, brain and spinal cord. Patients are supported by a ventilator and monitored in the ICU.

So far, only about 100 patients have taken part in the study. For many, it has been miraculous!
However, like any treatment, there are no guarantees. There are also significant risks, especially in Jessica's fragile condition.

The Ketamine Coma shows great promise as a treatment for severe RSD- the key is going to be more research.

What is Ketamine?

Ketamine is a central nervous system depressant that produces a rapid-acting dissociative effect, blocking signals to the conscious mind from other parts of the brain. It was developed in the 1970s as a medical anesthetic for both humans and animals.

There are currently three kinds of ketamine treatments: The Awake technique (continuous low dosage for 4-5 days), the Outpatient low-dose infusion (4-5 hours a day for two weeks, then gradually-lower doses), and the Coma technique (continuous high dosage for about a week).

The hypothesis is that ketamine blocks the neurons and manipulates NMDA receptors which might reboot aberrant brain activity, the coma shuts down the nervous system, allowing damaged nerves cells to heal and "reboots" the patient's brain, much like a computer.

Ketamine can have some nasty side effects. Especially when emerging from the coma, patients may experience hallucinations, lack of body awareness, visual distortions, confusion, and weakness.

Why Mexico?

There is a popular misconception that medical care in Mexico is of inferior quality. However, this is not (always) the case. In fact, many facilities in Mexico are state of the art, with top notch care.

Because Ketamine is considered a schedule 3 drug in the U.S., only a small amount of ketamine is legally allowed for medical treatment according to federal law. The high doses required for the Ketamine coma are currently only legally available in other countries.

Jessica's doctor, Dr. Anthony Kirkpatrick, is one of only a few specialists involved with this study in the U.S. He has teamed up with Dr. Fernando Cantu and his team in Mexico to perform the Ketamine Coma.