Quote:
Originally Posted by mom22galz
Hi All,
My 11y/o daughter was recently diagnosed with CRPS.
Last summer she suffered multiple trauma in a tragic car accident which claimed the lives of two cousins and also injured her sister. The accident resulted in many months of inpatient and day-patient treatments. Both my girls are back at school now and have made a miraculous recovery, although they still have much work to do! We knew all along that my 11y/o had some nerve issues in her right foot, but had no name for the condition and were not aware it could spread etc.
As a result of the CRPS diagnosis, her PT routine has changed and she began taking gabapentin which does seem to be helping. She is being followed by the pain team at Sick Kids in Toronto, so I suppose we are lucky to have doctors who understand the condition.
My current dilemma has to do with a long-anticipated surgery. Right after the accident, her left leg was surgically repaired with internal fixation. The ends of the pins were deliberately left fairly exposed to facilitate easy removal once the fracture had healed, as is common practice for pediatric patients. She has significant pain at the pinsites, and has bravely accepted that this pain, unlike that in her right foot, would go away once the pins were gone... you see where I am going with this...
The CRPS Dx means there is no guarantee the surgical removal will reduce her pain, and could in fact make things worse. She is so young, my heart is aching that she will have to fight yet another battle -- while at the same time realizing we could so easily have lost her already and trying to find joy in that.
We are so new to CRPS, I'm thankful to have found this site!
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Dear Mom22galz.....
AND I am so thankful you found us..You will find this site to be filled with compasionate, knowledgeable RSD patients...I also want to say that I am so so so so sorry that your daughter has been diagnosised with CRPS... she and your entire family have been thru so much already as a result of the terrible accident..And yes, you are right that you fortunate that she is recovering somewhat and still with you but that does not help trim those painful edges of what she and your family are still suffering... I really want to say the one positive to all of this is her age..being so young, quick diagnosis and treatments may possibly place her in a good spot with CRPS....remission..but time is of the essence...intervention is needed..although i realize you have much medical intervention ahead of you as far as the pin removal but plz. please focus on the CRPS itself and move fast..As far as the pin removal, personally, I am not sure you have a choice as the pain, although independent from the CRPS now..it may be encompassed by the CRPS later..as it does travel, don't allow anyone convince you it does not!! And surgical intervention can cause spread but it just may go there anyway..without the pin removal...
I hope I was able to shed some light on your situation..I am again so sorry for what your daughter has ahead of her but one thing to remember is she must be a fighter..don't not give up and when things become complicated and hard to sort out due to CRPS..you come to us!! It is gut wrenchtening as a parent watching our children bare such big painful hurtles..I understand and am sorry for you too...
Welcome...
Kathy

