A friend recently told me that a parent is only as happy as their least happy child. Imagine when that child is chronically ill. Our son, Matthew, is suffering from CRPS: Complex Regional Pain Syndrome. It is a little known and little understood condition where a nerve (in this case his left foot below the ankle) is constantly sending pain signals to the brain. As a result, Matthew is in constant agony, often unable to refrain from screaming. He is unable to walk or even touch his foot. A mere breeze feels like daggers piercing his skin.
We first became familiar with CRPS a year ago. A soccer field injury at school was misdiagnosed as a broken ankle and Matthew's foot was set in a cast for six weeks. Only after the cast was removed and he continued to complain about increasing pain, did we discover -- after numerous trips to doctors and emergency rooms -- that Matthew was suffering from CRPS. His treatment began immediately, including intense physical therapy and various prescription medications. Matthew was cured in less than two months.
It was nothing short of a miracle. We had our son back and he had his childhood back. He was completely symptom-free for an entire year. Then, almost as mysteriously as his condition improved, he suddenly suffered a relapse. This time it was much worse. The skin on his left foot, which had been only slightly discolored before, was now almost purple and flaky and the swelling was severe.
Matthew had just entered middle school and the new friendships he had started to form in the early weeks of his first semester were suddenly interrupted as the absences from school went from days to weeks to months. The staff at the school could not have been more helpful. They emailed his assignments and graciously provided a teacher to help home-school Matthew through the ordeal.
The psychological fallout has been more severe. This young boy just entering adolescence was now gaining weight due to the various medications, threatening an already fragile and changing self-image. Plus, he was now becoming accustomed to his newfound social isolation. At a time when he should be cementing relationships with friends, those bonds were slowly eroding as his contact was limited to occasional after school visits and phone calls.
His mom, my wife of 27 years, is taking this especially hard. It is never easy watching a loved one suffer and when that loved one is your youngest child, it is especially painful. Matthew is being robbed of the everyday experiences that sixth grade offers -- that first crush on the girl in science class, palling around with kids on the playground, riding bikes after school - all of it has been placed on indefinite hold.
Family and friends never quite know what to ask. The question, "How is he, today?" lingers in the air, unspoken, but always understood. "Why can't they make the pain go away?" and "How long will this last?" Those and dozens of other queries go unanswered because there is, simply, no answer. While CRPS is difficult to treat -- there is no cure -- it is even more challenging when dealing with a child. Treatments which show promise in adults, including nerve blocks, often cause the condition to actually spread when dealing with a young patient's still developing nervous system. Matthew's doctors assure us he will get better and so we believe he shall. But in the meanwhile, we wait and hope and pray for that miracle to happen. Again.
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Complex regional pain syndrome - MayoClinic.com
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Complex regional pain syndrome (CRPS)
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He was diagnosed with this at around 5 years old, although he had it at birth. My son has hundreds of bone growths throughout his body. He has had 9 surgeries in 9 years and has lots of pain. There are many physical things he has not been able to do.
He is my hero! He is so brave, rarely complains, and rolls with each new symptom or pain. I have learned so much getting to be his mom and advocate through this experience. I have noticed that for me the thing that can get me down the fastest is when I dwell on what my son has lost - rather than the gifts he has gained through this. It is not easy, but when I shift my thinking just a tiny bit, the sorrow and grief lift a bit and it is not so hard to go on.
My heart goes out to you and wife and your family. I know it takes a toll on the whole family. I hope his nerve switches back to normal and sooner than soon.
My daughter also suffers from this horrendous condition. I want you to know that in spite of all the sorrow, anger and grief our family has experienced over the years she has suffered with this condition, she is now living independently in London, attending university. She has a boyfriend, a job as a nanny a few hours a week, and has gotten involved with Democrats abroad, starting a young professionals chapter. She has learned to cope - not always easy an easy thing to do. I'm so very proud of her!!
Please, if you'd like to talk with me, let me know and we can figure out a way to get in touch.
Francesca
Regards
Jim
I pray for your son's pain be lifted. But I also hear your story just how much you love and cherish him, which is something to be grateful for despite the godawful challenge of the cards you have been dealt.
I cannot tell you how much I, too, have learned from my children. My son is my hero. He is so brave and how he maintains a sense of humor despite the pain is hard to imagine. I truly believe he will be better and I know that once he beats this, nothing in life will scare him.
Thank you for your kind words.
One sentence in your post sticks in my mind: "Matthew's doctors assure us he will get better." It's my experience that doctors no longer make these promises if they don't mean it.
So, I think he will get better. And that's good news. All my best to you.
Toni Bernhard
www.howtobesick.com
Thank you so much for your response. I guess you are right - doctors are not comfortable giving false hope. I believe Matthew will beat this again.
Wishing you the best
Regards
Jim
jimmoret.com
You might have a look at my website as it is about a book I'm having published on living well with chronic illness. I hope it can help a lot of people.
Best again,
Toni
What I found striking in the stories about it is that at a certain point a lot of patients (while mrs Shinka was manipulating the foot) heard and felt a kind of 'click' which seems to suggest that still a little body part was out of place somehow (I find it hard to describe in English since it's not my first language).
Normally I'm not the kind of person propagating alternative medicine, especially homeopathic crap doesn't seem worthwhile to me, but this really seems worth investigating.
I found a telephone number and e-mail of a Dutch man who visited mrs Shinka with his wife who was suffering from CRPS. He wrote it on a website, so I don't hesitate to write it here as well: arie@avdpijl.nl His telephone number (in Germany) 0049 65577533.
One of the doctors of the Bethesda hospital ('ziekenhuis' in Dutch) his name is Jan van Gijn. The name of one of the physiotherapists is Edwin Draaijer.
I wouldn't hesitate to investigate this method. Lots of luck with your son and the effects his condition has on your family.
Her family in Macedonia told her about a Macedonian woman, named 'mrs Shinka', who lives in the village of Gevgelija. She has the ability by touching the foot in a ferm but knowledgeable way to gradually, over a few days/weeks to improve the foot/arm/knee or whatever body part is affected.
I know that you wrote that touching your son's foot is hardly possible, but somehow this woman is able to do it anyway.
The Dutch/Macedonian family came back relieved and spread the word. Other families with affected family-members visited Macedonia as well, all with good or near-good results as far as I know. Soon a team from the Bethesda hospital in the north of the Netherlands, in Hoogeveen (in the province of Drenthe) visited mrs Shinka to see what kind of technique she used. They went with doctors, physiotherapists and a camerateam, and then tried back home to apply the technique. Although they don't seem to be as good as mrs Shinka in applying this technique it does seem to work. (to be continued in part 2)
One of the treatments includes desensitizing the area by using increasing pressure on it several times a day. he started with a tissue (running it over his foot 30 times) and now he is up to using a cloth. He screams so loudly that he uses a pillow to mask the noise. Eventually he will allow water to hit the foot in the shower (he has been taking baths and hanging his foot over the edge so as not to touch it) We are hopeful that whatever "nerve switch" is misfiring will eventually reset to normal.
Regards
Jim