Before November of 2003, Lindsay Wurtenberg was the typical fourteen year old girl. She had spent her entire life dancing.  It was her greatest joy.  She also spent endless hours ice skating, rollerskating, and had been taking horse riding lessons for about six months.  In early November Lindsay was bitten by a brown recluse spider in her right thigh.  She spent the entire month being treated with steroids, antibiotics, low dose anti-seizure medication, and three different narcotics to alleviate the pain associated with the bite.  She said that she felt like she was being stabbed in her thigh.  Unfortunately, none of the medications stopped the pain.  She frequently missed school, or if she did manage to get there, was sent home early when the pain became too unbearable.

Our family doctor, Doctor Provencher, referred Lindsay to DuPont Hospital for Children in Wilmington, Delaware in the first week of December.  It was there that she was diagnosed with Reflex Sympathetic Dystrophy, also known as RSD.  At that time, she was walking with crutches because she could no longer put pressure on her right leg. After ten days in the hospital, five of them in physical, occupational, and aquatic therapy, Lindsay went home using the crutches only occasionally.  Her pain level decreased by half once the anti-seizure medication, Neurontin, had been increased.  She was also taking Elavil, an antidepressant, in the evening.  Both are used for neuropathic pain.

Throughout January, 2004, Lindsay went to school from two to three days a week.  On the days that she was not at school, she was at DuPont participating in the same therapies mentioned above.  Four to five days a week, her teachers were coming to our house after school hours, to help her catch up on all of the work she had missed since November.  This was not an easy time for her.  She was emotionally drained as she insisted on trying to maintain some normalcy in her life.  Her pain level increased and decreased from day to day, making coping with normal activities extremely difficult.

In early February things started looking up.  Lindsay's gait became stronger and steadier.  We decided to find a physical therapist closer to home to make things easier.  Her pain level stayed at a steady "4" on the 0 to 10 pain scale.  Unfortunately, halfway into the month, the RSD spread from her right thigh to both shins.  Lindsay was admitted to Hahnemann Hospital under the care of Dr. Robert Schwartzman.  An epidural catheter was placed in her back for a bupivicaine infusion (an anesthetic used as a nerve block).  In 24 hours there was minimal relief.  Less than 48 hours later the catheter was removed when Lindsay spiked a temperature of 101.7.  We were told she had meningitis.  There is a less than 1% chance of developing meningitis with an epidural catheter. 

During the next seven days Lindsay was on IV antibiotics.  The next treatment tried was an IV Lidocaine infusion.  It only lasted three days because her blood pressure became extremely low.  After nine days, Lindsay was discharged in a wheelchair.  By this point, the RSD had spread to most of her body, and she had difficulty standing even momentarily.  Lindsay was also experiencing the color changes to her skin and temperature changes. 

Throughout February, March, and April, we struggled to keep Lindsay comfortable.  After being discharged from Hahnemann it took me two weeks to find a physical therapist to come to our home.  The pain was so bad that she could no longer take care of herself.  I eventually took a leave from work.  RSD had taken over.  It wasn't long before the muscle spasms started in her legs.  Her father and I spent endless nights holding her legs to keep her from shaking.  Every day, she asked me why she had to live like this.  Every day I made up a new answer, trying to convince myself as well.  Lindsay wished for death.  That broke our hearts.  I told her to "just breathe."

Finally, Dr. Schwartzman suggested a very controversial treatment.  It is called the ketamine-coma treatment.  At the time, it was only given in Germany.  Currently, you can also receive it in Mexico.  I didn't have to think twice.  Lindsay and her father took a little more convincing.  But I basically told them that this was going to happen.  Nothing else had helped, and Lindsay's health had declined too quickly, in just a few months.  In no time at all, multiple fundraisers were held, and we had the necessary funds to make the trip to Germany.  We are blessed with wonderful family, friends, co-workers, and a great community!  They made it happen for Lindsay!  

Lindsay received her treatment in June 2004.  She did have hallucinations during the coma, and amnesia on the first day post-coma.  She had no idea who her father and I were when we went for our daily visit to the hospital.  That was a horrible day.  We started to worry that there might be long term psychological effects.  Fortunately, she became more herself within the next couple of days.  She arrived home with no RSD pain!

Lindsay was scheduled to receive low dose ketamine boosters after returning home.  Two weeks after returning home and prior to those treatments, she needed blood work done.  About a half an hour after the blood was drawn, she complained of RSD pain on her right arm.  We were worried, but the booster treatments took care of it.  For the first 4 to 5 months, Lindsay had several relapses.  Some were worse than others, but usually the low dose ketamine handled the pain.  When the ketamine didn't help, the pain typically calmed down on its own after a few weeks.

This cycle has been repeated every autumn and spring since the coma treatment.  Relapses have also occurred after Lindsay has had viruses.  She still gets occassional ketamine treatments.  RSD lesions continue to bother her, but she treats it with Clindamycin solution.  She also continues to use heat therapy (hot tub, parafin dip for hands, heating pad) when needed.  Lindsay takes no pills at all, as they don't work for her.  Although the ketamine-coma treatment did not turn out to be a cure for Lindsay, it certainly gave her back her life.  It gave her a remission, and the boosters have given her many other remissions.  For that we are very thankful. 

CURRENT NEWS

February 1, 2009  

Already into the second month of the new year...hard to believe!  Lindsay went back to school after a well deserved, month-long winter break!  She is still counting her blessings.  Most RSD symptoms have kept a distance.  This is her best winter since being diagnosed. 

March 23, 2009

Waiting for spring to really arrive!  Maybe the warmer weather will come soon.  We hope everyone had a good winter.  We were just remarking how Lindsay hasn't had a ketamine treatment since March 31/April 1, 2008.  What a blessing!  Although she has had a few minor relapses, she has chosen to coast through them.  Unfortunately, sometimes as soon as you count your blessings, something happens!  Lindsay tripped and fell forward a few nights ago and landed on her wrist.  It has a soft cast/splint on it for now, and she will be seen by the orthopedic doctor at the end of the week.  The x-ray didn't seem to show a break, but it is being treated as one for now.  Naturally, I am nervous about the arm being immobilized, so we are praying that the splint can come off and that the pain will stop.  So far, she has said that it is not RSD pain! 

Lesson for the week: Don't text and walk at the same time! 

March 31, 2009

Lindsay saw the orthopedic doctor on Friday.  He replaced the soft cast with a removable splint.  He feels that the wrist is probably sprained, not broken, but we will probably know for sure when it is x-rayed again in a few weeks.  Luckily, this doctor is very familiar with RSD, having treated many patients with it in the past.  He instructed Lindsay to do certain hand exercises and to elevate her arm. Unfortunately, she woke up yesterday morning with severe stabbing RSD pain.  Looks like we'll be calling for a ketamine treatment.  At least she can say she went for a whole year without one.  That in itself is remarkable.  Please keep her in your prayers for a speedy recovery.

April 19, 2009

Lindsay received a two day outpatient ketamine treatment the week before Easter.  Unfortunately, the treatment did not help this time.  It has been a very rough week for her.  A second visit to the ortho doctor and a follow-up x-ray on Friday, confirmed that the wrist was not broken after all. The splint has been removed, but the wrist still "hurts like hell".  (Under the circumstances, Lindsay, I excuse you for talking like that!!)  At this point, Lindsay is trying to keep up with all of her art work and studies.  She has told me that in order to complete all of the work she has, she can't see fitting in another ketamine treatment until after school ends.  Hopefully, the pain will disappear before the middle of May.  I give Lindsay a lot of credit for maintaining a normal life, when she is going through this hell again.  I give all RSD patients a world of credit for all they have to do just to get through the day.  Emotionally and physically, this crap can really beat you up.

June 5, 2009

About a week and half ago, Lindsay received another 2 day treatment.  Again, no relief.  Very frustrating for her, along with the fact that she has been unable to start working.  Today she finished  her fifth day in a row.  Fortunately, this time I can report thet her pain has decreased to about a "2 or 3".  Amen!  To try and get things perfect again, she will have another two day treatment in 2 weeks.  Thank you to everyone who keeps her in their prayers.  Dr. Schwartzman is very happy with her progress at this point. 

December 5, 2009

I am pretty tired out right now so this update will be short, although not sweet.  Lindsay has been going through one of her worst relapses over the past month.  Pain in the lower back has radiated to her right abdominal area.  The pain has been intense and constant.  Two days of ketamine boosters have not helped yet.  The TENS unit gives occassional minimal relief from the horrible spasms.  Once the semester in completed, Lindsay will receive five days of boosters.  Can only hope and pray for the best.