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lexi10
@lexi10

Posts: 2
Joined: Mar 22, 2017

CRPS in kids

Posted by @lexi10, Mar 21, 2017

My 10 year old has CRPS. Any ideas as a parent to help her deal.

REPLY

Hello @lexi10,

Welcome to Connect. It must be heartbreaking to watch your child struggle through pain! We’re so glad you’ve come to Connect as we have active, ongoing discussions about CRPS, and I’m certain you will get more information from Connect members.

I’d like to introduce you to @kathyv, @janetdh, @charwill234, @bettyjo, @susanlorrie, @janetpr, @nursegigi, @agmc, @cmp4001, @ursus, @islandhippy, @oldnana, @mel143, @mel04, and @overwhelmed.

If you would like, you may also want to read and join these discussions in the Brain & Nervous System group:
After knee replacement I developed severe RSD, http://mayocl.in/2cX10nN
RSD/CRPS: http://mayocl.in/2nJPDog

@lexi10, would you share a few more details about your daughter’s symptoms, how she’s coping, and what you do to help her find some relief?

@kanaazpereira

Hello @lexi10,

Welcome to Connect. It must be heartbreaking to watch your child struggle through pain! We’re so glad you’ve come to Connect as we have active, ongoing discussions about CRPS, and I’m certain you will get more information from Connect members.

I’d like to introduce you to @kathyv, @janetdh, @charwill234, @bettyjo, @susanlorrie, @janetpr, @nursegigi, @agmc, @cmp4001, @ursus, @islandhippy, @oldnana, @mel143, @mel04, and @overwhelmed.

If you would like, you may also want to read and join these discussions in the Brain & Nervous System group:
After knee replacement I developed severe RSD, http://mayocl.in/2cX10nN
RSD/CRPS: http://mayocl.in/2nJPDog

@lexi10, would you share a few more details about your daughter’s symptoms, how she’s coping, and what you do to help her find some relief?

Jump to this post

She is only 10 and loves gymnastics! About 4 months ago she hit her foot on a wall then could not bear weight. It soon became cold, blue and pulseless. After many er visits and hospital stay they dx her with CRPS. Her foot started working again and back to gymnastics! Now she fell off the monkey bars and her arm is swollen and any movement or touch hurts.xrays are clear.

@kanaazpereira

Hello @lexi10,

Welcome to Connect. It must be heartbreaking to watch your child struggle through pain! We’re so glad you’ve come to Connect as we have active, ongoing discussions about CRPS, and I’m certain you will get more information from Connect members.

I’d like to introduce you to @kathyv, @janetdh, @charwill234, @bettyjo, @susanlorrie, @janetpr, @nursegigi, @agmc, @cmp4001, @ursus, @islandhippy, @oldnana, @mel143, @mel04, and @overwhelmed.

If you would like, you may also want to read and join these discussions in the Brain & Nervous System group:
After knee replacement I developed severe RSD, http://mayocl.in/2cX10nN
RSD/CRPS: http://mayocl.in/2nJPDog

@lexi10, would you share a few more details about your daughter’s symptoms, how she’s coping, and what you do to help her find some relief?

Jump to this post

I have had CPRS for 2 1/2 years with pain every day. This occured after knee replacement. I was in such pain the first year that I could not eat. I lived on Boost milkshakes and Oxycodone and my weight dropped to 100 lbs. I had spinal blocks which did not help at all. I went to neurologist at Vanderbilt and the only thing he offered was a higher dosage of Cymbalta which I did not want to do. I currently take 150 mg of Lyrica, 60 mg of Cymbalta and Oxycodone as needed. I am scheduled to start Ketamine infusions (200 mg each day for 2 weeks) next Monday. I am excited about this as I know it will help, I just don’t know if it will last months, years, or lifetime.

@kanaazpereira

Hello @lexi10,

Welcome to Connect. It must be heartbreaking to watch your child struggle through pain! We’re so glad you’ve come to Connect as we have active, ongoing discussions about CRPS, and I’m certain you will get more information from Connect members.

I’d like to introduce you to @kathyv, @janetdh, @charwill234, @bettyjo, @susanlorrie, @janetpr, @nursegigi, @agmc, @cmp4001, @ursus, @islandhippy, @oldnana, @mel143, @mel04, and @overwhelmed.

If you would like, you may also want to read and join these discussions in the Brain & Nervous System group:
After knee replacement I developed severe RSD, http://mayocl.in/2cX10nN
RSD/CRPS: http://mayocl.in/2nJPDog

@lexi10, would you share a few more details about your daughter’s symptoms, how she’s coping, and what you do to help her find some relief?

Jump to this post

I am sorry to say that someone who has been diagnosed with CRPS, a second injury can cause it to worsen. My initial injuy was my ankle and I had CRPS symptons but was not diagnosed until a hip fracture made the ankle pain much worse and my leg turned blue and cold. It has since spread to other areas. Getting diagnosed and treated as quickly as possible is key. You need to take your daughter to a doctor that knows and works with CRPS patients. My primary did not know what it was until I got treated by a pain doctor who did–this was my 3rd pain doctor. Please keep us posted to see if we can help in any way! Prayers with you and your daughter

@kanaazpereira

Hello @lexi10,

Welcome to Connect. It must be heartbreaking to watch your child struggle through pain! We’re so glad you’ve come to Connect as we have active, ongoing discussions about CRPS, and I’m certain you will get more information from Connect members.

I’d like to introduce you to @kathyv, @janetdh, @charwill234, @bettyjo, @susanlorrie, @janetpr, @nursegigi, @agmc, @cmp4001, @ursus, @islandhippy, @oldnana, @mel143, @mel04, and @overwhelmed.

If you would like, you may also want to read and join these discussions in the Brain & Nervous System group:
After knee replacement I developed severe RSD, http://mayocl.in/2cX10nN
RSD/CRPS: http://mayocl.in/2nJPDog

@lexi10, would you share a few more details about your daughter’s symptoms, how she’s coping, and what you do to help her find some relief?

Jump to this post

Did your doctor let you know that the two weeks are the “loading up” of ketamine. Following that you will probably be scheduled every 4 to 5 weeks for 1 to 2 days. Good luck!!

There was no mention of follow-up. He said he had some good results with this treatment.

@oldnana

There was no mention of follow-up. He said he had some good results with this treatment.

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I’m surprised. I have been getting infusions for the past year and have met numerous patients who have been getting them for years. Let me know how it goes.

Jane-
Have you had success with the Ketamine infusions? If so, how much relief do you get?

@kathyv

Jane-
Have you had success with the Ketamine infusions? If so, how much relief do you get?

Jump to this post

Unfortunately, though I was treated with ketamine for a year, my CRPS did spread. I had a hard time with the dissociative/hallucinogenic characteristics of this medication. I am taking a break from it right now (haven’t had a treatment since January), but don’t know whether I will go back. I met a number of patients, however, that did get a great deal of pain relief from these infusions and some of them have been treated with it for many years. My pain doctor and neurologist have both said, if it can’t hurt you try it. I am exploring Calmar/Scrambler therapy currently as some chronic pain patients have had good success with this treatment. It is a jungle out there! Best wishes.

I just read up on the Calmar’Scrambler treatment. Does the Mayo Clinic use this therapy?

@kathyv

I just read up on the Calmar’Scrambler treatment. Does the Mayo Clinic use this therapy?

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Kathy, you might be interested in this story about a partient being treated with the scrambler at Mayo Clinic “Breaking Away From Pain With the Help of ‘The Scrambler’ ” http://mayocl.in/1GxsEyS

Dr. D’Amato was trained in Italy on this treatment and opened 1st center devoted to this (brochure!). His center is in West Warwick, R.I. Has provided advanced training to folks at Mayo Clinic and John Hopkins. Web–www.CalmarPainRelief.com

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