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:

It breaks my heart to hear about your daughter and you are a wonderful mom to be helping her during this difficult time.
I can't stress enough: Time is crucial in getting this reversed or put into remission. I have been able to help several patients in our area get just that so I do know it is possible!
There are several wonderful support groups for children with CRPS from RSDHope or CRPS.org that your daughter should join so she knows of others who can give her insight & help and see that she too can overcome so many obstacles she will be faced with. Education is highly important for everyone to understand about this condition. Not only her friends but also her teachers should should all be a part of helping her through this instead of isolating or abandoning her. There are also some very good pamphlets about CRPS from kids to kids that are amazing too!
Her dr is right about keeping her walking on it even when extremely painful for this condition worsens when the limb is immobile.

Doing a warm Sea Salt Mud at least 2x day will help to ease some of her pain, circulation & keep the skin moist. I picked my Dead Sea Salt up on Amazon fairly reasonable price.
After the warm soaking of her foot or if doing the mud have her gently rub mineral oil or baby oil gel into her skin. Even massaging her toes, ankles & shins helps to stimulate the area reducing the symptoms.
Also be careful what type of shoes & socks she wears for any thing tight on her skin even up her shins can create havoc for her. It may start out as fitting normal but even after only 15 minutes can result in added swelling or pain. I use fleece or very soft socks without the traction on the bottoms as this can aggravate her pain. It might help if she wore slippers 1 size larger than normal so she can wear thick socks if need be.
I had to redo my entire bed to reduce the weight of the covers (now use fleece instead of thick heavy quilts) and soft warm sheets.
Remember as her support system you too will need all the support from others for this can all be overwhelming & scary at times.

I wish you both all the luck in getting her help quickly and will say a prayer that she will no longer suffer.

Gentle hugs

Welcome
 

Hi Buffym,

Welcome!:D

I, too, am very sorry your daughter has had to endure these challenges.:(

Many have responded in length with helpful information.
I haven't much to add at this time.

I do want to express my gratitude to you for your willingness to become an advocate for your daughter, your willingness to do some research to help her, etc. Not every parent steps up. I want you to know you have my deep admiration for stepping up for your daughter. :hug:

I remain hopeful for your daughter's healing. :)

Warmly,
DejaVu

It really sounds like your PT is doing some good work with your daughter. It is wonderful that you have found someone knowledgeable. My daughter (now 16) was 12 when she was diagnosed. Please feel free to private message me if you would like to talk about our experiences. We have tried a variety of medications and therapy approaches. Best of luck!

I can't thank all of you enough for your kind words. We have another PT session today after school. We even had some fun doing her at home PT this weekend, was so great to see her smiling and so proud of herself for working to help herself. :)

Also, if you're wondering what kind of specialists treat CRPS, there seems to be several. Some see neurology, or pain management, or physical medicine rehab specialists. I think there's a couple others that I can't recall just now. It just depends on the level of expertise the doctor has with CRPS, and if they really listen to understand.

So glad pt is helping your daughter! My son is 9 too and going through similar situation. We went to register doctor to podiatrist who thought it was just a simple injury. Then to sports doc now with a neurologist. He has severs as well as an extra foot bone. But they found out by mri that those are not the major problem. Now they diagnosed him with complex regional pain syndrome and doing a bone scan this Friday to back that up. He's on prednisone and neurontin. Which has shown side effects now so they said to back off neurontin until steroid is done. Then start the neurontin back up to see if that might help. I feel your stress and I'm also besides myself. Oh they put him on crutches too...he's now off of them....lidoderm patches helped with that. On top of this he ended up with his left intestines impacted due to being immobile and the meds. Every time he tries to be a little active he ends up in even more pain. :/ your not alone <3

Thank you for responding. My kiddo is going for an evaluation at one of the major children's pain clinics for CRPS in early December. Fingers crossed that they can help. She's doing PT twice a week now, plus exercises at home every day. She hasn't been on any medication yet. The PT is getting her leg strong again, but hasn't done anything to help her pain yet. Originally they though her foot pain was caused from Server's Disease too & inflammation in her growth plate.

Just a quick update - we had a great visit with multiple specialists at a major children's hospital, they did confirm CRPS. But, because of her age, neuroplasticity, and how early we caught it, they were very hopeful about her chances of getting to be pain free. So far they told us we had been doing everything right, and often they don't see kids until they are much further along. This was so reassuring to her dad and me. So overall, feeling really hopeful.

Yay! That is so good to hear. So glad that they caught it early and think she has a chance at remission. That has to be a big relief to all three of you.

Hi Buffy,

Thanks for the update. What a blessing! That is all so very hopeful and wonderful to hear.

Keep us posted. We are rooting for your daughter and family.

Sending warm thoughts for healing and comfort, :hug: