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Zoes Heroes

FROM ONE PARENT TO ANOTHER…

“Dad!  You need to come home! A brick fell on my foot and I can't walk.  The doctor said nothing is broken or torn, but I still can’t walk.  It feels like someone is sticking a knife through my heel, it’s burning and it hurts so much when they touch it”.

These were the words of our 11 year old daughter, Zoe Gellert, who was in a crush injury accident resulting in instant debilitation and injury to her right ankle. Zoe was immediately non weight bearing and was describing pain symptoms that were completely out of the ordinary for her injury. Many doctors turned her away and related her detailed descriptions to those of a child with a meticulous imagination. Though it took six weeks,  Zoe was finally diagnosed with Complex Regional Pain Syndrome. For my wife and I, this was the first moment in our lives that ‘brought us to our knees’.  Having a child that is constantly in pain with symptoms that got worse over time was a devastating situation that immediately threw us into acute survival mode. Our 6th grader no longer went to school seven hours a day but rather spent her time in doctors offices and waiting rooms all to obtain the best and most immediate treatment for her new condition which we still did not know much about.

Over the past 5 years, Zoe has learned an incredible amount about herself and her disorder. She is intelligent, passionate, tenacious and a natural born leader. She has dedicated her time to helping other children who suffer from chronic pain and she continues her own research for treatments and alternative therapies. Though she has bad days, Zoe thrives on passion projects, community service and educating herself while listing to her own body. She continues to push herself and learn from her doctors and peers. While Zoe is doing well, she still suffers from chronic pain and continues her treatments with a network of doctors therapists who will help her get through her senior year of high school and beyond. Attached below is a detailed video of Zoe’s story that we would like to share.  We hope that you enjoy it and that it is inspirational for you or someone that you know with CRPS.  If you would like to email Zoe, please contact her at zoesheroes@icloud.com.  We hope to hear from you! 

 

 

My wife and I are very grateful that we have been extremely lucky.  Within 3 months of Zoe’s injury she was diagnosed, admitted into the hospital for intensive treatment and walking without any support.  However, the feeling of being ‘a fish out of water’ is still very fresh for us.  Being thrown into the abyss of pediatric CRPS resulting from injury – whether during the pre-diagnosed, diagnosed, treatment or recovery stages – is completely overwhelming.  Throughout our research, it was very important to us to consider treatment options that were drug free, non-invasive, aggressive and appropriate for a child.  So below we feel compelled to highlight and share what we have learned about pediatric CRPS and what has worked for us and our family thus far in our journey…

TOP 20 DOs, DONTs, SUGGESTIONS AND PRACTICALITIES FOR PEDIATRIC CRPS*

  • Do not apply ice
  • Do not cast or immobilize the affected body part
  • Do not get a flu shot
  • If your child must have an IV or get a shot use a butterfly needle - the smallest needle possible
  • Discuss with your doctor including a dosage of Ketamine along with any anesthesia during surgery
  • Your child must be encouraged stay engaged in everyday life activities
  • Endure as much daily physical activity or physical therapy as your child can tolerate
  • Recovery is mostly about function over pain - explain to your child that he/she will not hurt himself/herself
  • Seek a Cognitive Behavioral therapist so your child has someone other than you to talk with about what they are going through and to learn pain management techniques
  • All family members should be encouraged to discuss with a therapist how they are coping with the affected family member’s diagnosis 
  • Do not ask your child about the pain he/she is feeling
  • If your child complains about the pain, be sensitive, acknowledge it and reinforce the mental exercises that help address the pain - but move on from the conversation
  • Your child must accept and surrender to the pain without identifying with it – don’t allow your child to mentally cut off the affected body part from their body
  • Do not allow CRPS to take over the household or to be the main topic of conversation with family, friends and work colleagues
  • Do not force your child to identify with the pain 
  • Books to Read:
    • Get Out of Your Mind and Into Your Life – Spencer Smith and Steven C. Hayes
    • Conquering Your Child's Chronic Pain – Lonnie K. Zeltzer M.D.
    • The Mind Body Prescription – John E. Sarno M.D
    • The Power of Now – Eckhart Tolle
    • Dr. Fulford’s Touch of Life – The Healing Power of the Natural Life Force - Dr. Robert Fulford

*We are not doctors. These apply to someone describing classic symptoms of CRPS or having been diagnosed with CRPS. 

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