Daughter Diagnosed with CRPS
 

Hi, I'm new here, and absolutely new to CRPS. My 9 year old daughter was diagnosed with CRPS on this last Monday, Oct 26th. She has had pain in her right foot and ankle for about 6 months, only when she walks on it. Initially her Dr thought she had Sever's Disease, but after months of no improvement, sent her to an orthopedic specialist who ordered an MRI. The radiologist made a diagnosis of CRPS based on bone edema all over her right foot. She is currently on crutches, and headed to Physical Therapy today. The orthopedist said she should try walking on her foot as much as she can as long as the pain is a 3 or less, but it is more painful that that when she tries. That is the only advice she gave us, and said we should come back for a follow-up in 6 weeks, and she should start PT immediately, which we are doing. It seems there there is more we should or could be doing. I live in a rural area in a small state, so I'm guessing finding Drs & specialists who have experience with this is going to be difficult. I'm overwhelmed with the information on the Internet, and this seems like a knowledgable group from the posts I've read so far. Would like to know what steps I should take to get her in front of the right Drs and specialists. Thank you.

I am saddened to hear this is happening to your daughter. I truly do not like to hear when young people have to fight this dreadful disease. I'd rather fight it ten times over than to have them suffer even one day with CRPS. You may want to contact a children's hospital for a good referral in your area of the state. Your daughter will want a Pain management Doctor that understands CRPS/ RSD. Also, ask your physical therapist about their experience in working with RSD / CRPS patients. This is not like other diseases, so an experienced PT is vital, or at least one that is willing to educate her or his self on how to help treat your daughter with this disease. One further point on getting a PT: If your daughter's PT is inexperienced, ask her/him if she/he is willing to consult with another PT that has experience in working with CRPS Patients. Here are some of the things that my doctors, Physical Therapists, and I have tried. Most doctors and PT's that have dealt with this disease before will be well aware of these treatments.

1. Mirror therapy (helps the brain imagine the symptomatic limb acting in a healthy manor; Retrains the Brain)
2. Flash Cards of feet and hands in various positions (CRPS patients struggle with identifying left and right limbs)
3. Physical Therapy
4. Desensitizing CRPS symptomatic limb using soft cloths to start and working way up to different fabric cloths and then on to other objects like popsicle sticks etc. (Desensitize 3 times a day and also after flare ups is what I have done)
5. Pain Management doctor
6. Medications prescribed by doctor
7. Music Therapy
8. Anti Inflammatory diet
9. Psychologist if depression becomes an issue (this is a tough disease)
10 Water Therapy (walking and doing Physical Therapy in the water helps take the weight off of the symptomatic Limb)
11. Tens Units and Spinal Cord Stimulators
12. Injections
13. OTHERS ON THIS SITE HAVE TRIED OTHER METHODS.. please add to what I've listed, if you'd like.

There is no cure for RSD /CRPS. Yet there is a chance for remission. The first 6 to 9 months of having this disease is the most opportunistic time for remission to occur, is what I was told.

Welcome to the site. The people here are wonderful and have a wealth of experience in dealing with this disease. Once again, welcome!

Spike has given a great amount of information to look for. Aqua therapy is also highly recommended if she has a difficult time putting much weight on her foot. It takes a fair amount of weight off allowing her to regain muscle memory and range of motion. Although I am sad to see someone so young end up with CRPS, her age is likely to help her go into remission. Children have the greatest chance of going into remission.

If you would like to gain some knowledge about CRPS, there are a great number of websites that can help with that. RSDSA an RSDHope are two of the better sites off the top of my head, but at the top of this forum's page is a resorces sticky thread that has a number of web pages listed in it that you might want to check out.

I almost forgot, do not let them use ice on her ankle. Ice is not recommended for use in calming down swollen areas that the CRPS is in.

Hi Buffym. Spike and Purple have covered a lot of great areas. I'm also so very sorry to hear your daughter has CRPS. Some of us in this forum refer to CRPS by it's older name RSD, but it is the same thing. Few thoughts, when I first came on here to this site I read every page of the "sticky" RSD LIFESAVERS and found it extremely helpful. I learned a great deal of what I should do that would be helpful and what I shouldn't do like put ice on the swollen area, as Purple mentioned. You will really have to be your daughter's advocate. Research on your end is vital. As Spike mentioned finding a PT and other members of her care team that are familiar with CRPS is ideal. If they are not familiar, they need to be open to becoming well versed in it. It is very helpful that she has been diagnosed early on. I live in an extremely rural area outside of Gainesville FL, and I have to travel to Dr.'s appointments. It took a long time for me to find them, but I found a couple of amazing Doctors. I hope you will stay on the forum, and ask as many questions as you have. There are so many people on here that understand this disease. Best wishes.

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Thank you for the support. By some miracle, the PT she had already started working with has treated CRPS and it was her area of study in college. The first thing she told us was no ice. I'm hopeful that she'll be able to help us. She mentioned many of the treatments that Spike spoke about. I'm praying that she was diagnosed early enough.

Pool therapy, mirror therapy and low dose naltrexone has helped me the most. My sister brought me an infared heating pad with jade discs to try this past week. It has helped warm me up after the weather cooled and I regressed.

Do not be discouraged, your daughter's age is a positive factor for making a complete recovery.

Welcome buffym,
sorry to hear of your daughter and you.
Sounds like your daughter's PT is on the ball with this so that's a plus anyway. Please feel free to chime in anytime. This is a great place to be understood and find info,or even just to vent. There's always an understanding ear about... :grouphug:

I spoke to her physical therapist today on the phone, and asked her about a program at the closest large Children's Hospital - so she is going to call some Drs. there, as she has contacts. I'm trying make everyone move quickly on this, since it seems like time is of the essence in the earlier days of this disease. PT mentioned that we would be doing mirror therapy, and additionally, she has my daughter doing an iPad game that has her pick left/right feet from pictures. She's doing great at that so far. And she's doing some light weight bearing exercises.

It sounds to me like your PT is on the Ball. Looks like your daughter is under great care with that person. The PT is a very important part of trying to get your daughter into remission. Their working with your daughter is the key here. You're a fantastic mom.

Hello and Welcome,

I am so sorry you had to come and join us. I know this is a frightening and stressful time but there is much reason to hope. CRPS bigwig Dr. Michael Stanton-Hicks of Cleveland Clinic says 80% of people improve over time. The odds are even better for children, I have read studies indicating 90%.

You have gotten much sound advice on getting your child well. I am so glad to read that you have found a knowledgeable PT. I would recommend adding as much fun as possible to the therapy. This is pretty easy to do in the pool! Getting creative with the process can keep it interesting for your daughter and her nerves. I have a nerve injury in my foot and used things in my therapy like brushing my foot with soft nylon brushes and walking barefoot in soft grass (gives dry/damp and cool/warm sensations depending on sun pattern.)

Keeping stress down for both of you is important. Our children always pick up on our distress which can come from many sources. Take care of yourself and let wellness be the priority for both of you. Any school issues will get worked out.

I always recommend Dr. Pradeep Chopra's two hour video "CRPS Diagnosis and Management". It is non-doomsday, has many treatments and tips and has a special section on pediatrics.
https://www.youtube.com/watch?v=s3LKhOZ8mAM

Please come see us and let us know how things are going. I know your family is on all our hearts and in our prayers.

Sending hugs and healing love, :hug: