Broken hearted
 

It's been quite a while since I've posted a thread here. I developed RSD in 2007 after a foot surgery. I was actually fortunate to recover from RSD after about 1 1/2 years of intensive therapies. Now my 8 year old daughter recently hurt her foot. She apparently bruised a bone (ironically the same bone that I broke, only on the opposite foot, and she also hurt her foot doing an arcade type game--like dance-dance revolution, in gym, similar to how I broke my foot on the "Jumpin' Jackpot" arcade game). Her doctor believed she would be back to running around quickly since the MRI found only a brusied bone. It's been 3 weeks now, and she's not doing well. She won't bear any weight on it, she complains of "fiery burning pain" and numbness. Her foot turns a red/mottled color like mine did when I had RSD. I took her back to the the orthopeadist on Friday and voiced my suspicions. He told me that RSD is very rare in children. But at the same time she should be getting better and she's not, and the burning pain is a nerve issue, not a bone issue. He suggested we cast it for 2 weeks in case there was a hairline fracture missed in the MRI. I didn't like that idea, as I know what casting can do to an RSD limb. But I want her to be able to walk on it, so the compromise was a Cam walker that she can take off to exercise her foot. She still won't even bear weight in that. He says if it's not better in 2 weeks that he'll do another MRI to see if there is anything they are missing; if not--it's physical therapy. I am so sad for her. I know the awful pain she's going through, and at the same time I know that she needs to move her foot as much as possible or things are just going to get worse. She won't take any meds for it--not even any ibuprophen or acethaminphen, as it makes her nauseas. I can't imagine she would be able to deal with nerve blocks or many of the other therapies I had. She's in competetive figure skating; she's obviously missing that. I just can't believe she may have RSD--as awful as I remember the pain being I really wish it were me instead of her. I have not heard of this being genetic, but I certainly have to wonder--what are the odds that we would both get this?

I have no advice for your daughter other than trying to get her to someone who really knows RSD. Treating it quickly is important as we all know.

My half sister had RSD. She was very severe. Our father had severe nerve pain, so he may have had RSD also. I have mentioned my sister's RSD to a couple of my docs. One works at Cleveland Clinic and she says they think it is genetic in about 25% of the cases. But I have never seen a study or paper talking about it.

My RSD started with a stress fractured foot. A few years later, I fractured my other foot. They put me in a boot so that I could take it off in bed and to exercise it. The RSD had already spread into it before I could get to the doctor... so I don't think the boot caused it in my case. I now wear braces called AFO's. They are hard plastic, go from my toes to my knees, and are much like a cast. I use them when I have to be up on my feet, go to the grocery etc. They do help the pain in my feet.

I use lidoderm patches on my feet when they are flared up - perhaps they would help your daughter.

I'm so sorry to hear this. From my experience, I fooled around with ortho's for years before I found a Neuro (who rightfully, should be treating rsd). Can you find a Good Neuro for her? One with RSD experience! This is where You must do the work for her! 'Fiery burning pain, and the mottling you describe are disturbing. This is not something you should wait on.
Best of results for you both!

Pete

Dear Millerprof -

I completely agree with you UNDER NO CIRCURSTANCES SHOULD HER FOOT BE CAST. Immobilization is absolutely one of the worst things that can be done to a fresh case of RSD.

But the good news is that only three weeks out, there are a number of good treatment options available to her. Treatments that may well knock the RSD out of the box once and for all, whereas a few months from now, they would only be treatments and not potentials cures. Stuff like continous regional infusions of a mixture of a local anesthetic and ketamine. And even if they don't want to give a little girl ketamine, another NDMA-receptor antagonist such as dextromethorphan may fill the bill very well: it would mean about 3 - 4 days in the hospital, but without the discomfort of a LSB. (Which, being a kid, she would have under sedation in any event.) For an amazing tale regarding the treatment of a 17 y.o. female West Point cadet, check out:

A unique presentation of complex regional pain syndrome type I treated with a continuous sciatic peripheral nerve block and parenteral ketamine infusion: a case report, Everett A, Mclean B, Plunkett A, Buckenmaier C, Pain Med. 2009 Sep;10(6):1136-9. Epub 2009 Sep 9, FULL ONLINE TEXT @ http://www.rsds.org/2/library/articl...n_Plunkett.pdf

But heck, at this stage, she might respond to mirror box therapy just as well. (It's just a matter of finding a qualified therapist . . .)

I know of members on the forum who have have had good experiences with pediatric pain specialists, primarily in the Northeast. But this one is worth hauling you and and your daughter wherever she needs to be. And under the circumstances, I live little doubt that she would have to wait more than a few days to be seen. Her's is what anyone would call a priority case.

But help us out here, if you can give those who know of good pediatric options a general idea of where you live, it might be useful.

Mike

Millerprof, I went thru the same worry in the fall. My daughter, playing soccer, in the fall had sprained her ankle and the Dr. said it is so bad we are going to cast her for 2 weeks and i was like no way! He thought i was nuts but i asked what other options and she ended up with a camboot. I was so paranoid everytime she complained. It did take a while to heal and thank heavens it healed with no lasting problems. Hopefully your daughter will be the same. I think since we have RSD we are much more cautious of just casting. How is your RSD? momof4

Dear Millerprof,
I am soooo sorry to hear about your daughter. It is so hard for us to go through this pain and I can't imagine what a child goes through. Poor baby. I have heard of many children getting rsd so I don't know where your dr is with his comment. I have heard via Dr. S that they think it may be genetic...something like you are born with certain cells and they may lie dormant and then the trauma occurs and boom they are in action. I would not wait two weeks longer and would get her in PT ASAP. I started with my foot too so I know what she feels. If you can get a bath towel and roll it up (like you are going to hit someone with it haha) then put the middle part under the bad foot and have her pull left and right gently with the towel just to get it de-sensitized. Let her do it. Start out for a small period of time and work higher. This is how I started out...it was agony but helped me. The faster kids get in PT and really work through it the better chance they have of geting it into remission. Once she does get it gone she will have to be very careful not to injure her body again or it will come back. My dentist's daughter had it when she was younger, got rid of it, and later injured herself and it came back. She was able to get it back in remission. My son just started dating a young lady and found out she had it when she was younger too (What are the chances he met her and she knew about rsd? Crazy?). She was able to get it into remission. Kids' bodies are still growing and they seem to have a better remission statistic than adults. Best of luck with her and I will keep her in my prayers. I feel so bad for any person (let alone a child) that gets this mess. Let us know how she is doing and please get her in a good PT program that knows how to treat rsd. I would even look into a pediatric hospital and get her into PT there. Children's Hospital of Philadelphia has a great program here in the Philadelphia, PA area. Look it up on the internet and see if it has any reports/articles on kids with rsd and take it asap to your doctor to review. I think the CHOP doctor's name is Dr. Sherry.
Best of luck,
kathy d:grouphug:

Dear Millerprof,
I just read Mike's post and thought of something else he stated. I have recently heard of people taking Benadryl and it helped with nerve pain. Don't know how but it does so maybe that might be something to help her rest and relieve some pain. Poor baby. I just feel so terrible for her. Good luck and keep us informed.
kathy d

I am SO sorry to hear about everything your daughter is going through right now, Milerprof!:hug:

I developed RSD in my left leg in 2007 when I was 12 years old after an ankle sprain. It took 4 and half months to diagnose and later spread to include both arms and I have just been told that although I have back issues, my doctor now thinks it may have spread to my back.

I've spent 13 months in a wheelchair after a nerve block caused me to lose my coordination. I had to participate in a 3 week intense physical therapy course to learn how to walk again. I'm now 16 years old and can walk short distances with crutches, not perfect but better than how it used to be.

I can't imagine how scary this must be for your daughter at such a tender age. It was soo hard for me at 12 years old but I can't imagine how your daughter must be feeling right now!:hug: She must be one strong girl!

I agree with what the others have said, try and get her in to see either a Neurologist or a Pain Management Doctor. I live in the UK and in my opinion, Orthopaedic Doctors aren't very good at picking up on RSD. It was a Neurologist that told me he thought I had RSD and then sent me to a PM Doctor.

As for the blocks, I have only had one and I was put under general anaesthetic for it because of my age so they may do that to your daughter also so it's less traumatic for her.

My PM Doctor has always told my mum and I that he feels that RSD may be genetic or that if theres a history of neurological disorders in a family, you are more likely to develop it. It hasn't been proven yet but makes sense for me as my nanan had MS, grandad Parkinsons Disease and an uncle had an untreated chronic pain condition. My Doctor was going to do a study on it but I don't think he ever has.

I know how hard it is (as you do) but tell your daughter to keep moving as much as possible. Casting led to me developing Dystonia (a movement disorder) that I have never been able to get rid of no matter how many treatments i've had.

Don't give up hope. Keep pushing for a second opinion if you aren't satisfied. I was always told that the younger you are when developing RSD the more chance you have of it going into remission so that is working in your favour.

If you ever want to talk, please know that I am here for you. I know how hard it is to deal with all of this!:hug: My mum would also be happy to talk to you from a parents point of view.

Take care and keep us posted.

Alison

My daughter takes dextromathorifen for her pain. it is compounded.
Also, my daughter was very young when she was diagnosed with RSD. It is not uncommon. You should look into Cleveland Clinic childrens pain rehabilitation program. It is essential that she learn to control the pain at a very young age.
I sent you a pm

Sandy

Hi Miller, I am so very sorry for both you and your daughter. I've read many children getting RSD for sports injury etc. Like yourself, I recovered following RSD following surgery. Over a year of physical therapy and massage therapyBut another injury brought it back. 4 years into it was diagnosed with RSD and confirmed with nuclear med test. The contrastdye is one means of diagnosing RSD. My diagnosis came from sports injury orthopedic Doc. I have for the past 6 years a neuro, psychiatrist, internist etc. well experienced Doc that is progressive doc. He is also a pharmacologist and his knowledge of medicine and neurology has helped me tremendously. He is conservative and after over 15 years of RSD, I'm on fewer meds and more physical exercise, and in better place mentally.
Hope for the best for your daughter and yourself. Your friend, loretta

Thank you all for your encouragement and kind words. Since I've been through RSD, I've been pushing my daughter to use her foot as much as possible, massaging it for her, having her rub it along different textured floors, doing Epsom salt baths, picking up a towel with her foot, putting my TENS unit on her, etc. I think I'll try to get her into the pain clinic that I went to--they were really great with helping me recover and they have a warm pool for pool therapy. I'll try to keep you all posted.

My RSD is in remission. I had it 4 years ago; it took me 1 1/2 years to put it in remission. I'm so relieved, but at the same time I would rather it be me than my daughter. But I'm hopeful that if I could beat back the beast maybe she'll be able to, also.

Daughter doing better
 

Just thought I would update everyone on how my daughter is doing. I took her about 2 weeks ago to the first pain doc I saw when I had RSD. Now I am reminded why I didn't like him much. He actually suggested I have her foot casted and have her stay off it for another month. He wanted to refer her to an orthopeadist that he had referred me to when I had RSD that wanted to do ligament reconstruction on my foot (when all I wanted was to get my screws out). I decided that clinic was NOT going to be the place for my daughter! I was NOT going to cast it. His advice was so counter-productive--my daughter hearing she shouldn't walk on it. UGH.

I started calling around some more. Called another pain doc that I loved working with, but he's just very busy and always has a wait list. I asked about a referral for my daughter, and I heard back from his nurse--he recommended taking her to Children's Hospital Pain Program in MPLS. I called them up and at first they said they had a 3 month wait. I told them the probable diagnosis and they got her in within 2 days to meet with the whole team--the doctor, nurse, psychologist, physical therapist, and social worker. They gave her the CRPS diagnosis and explained in kid terms what was happening and why she needed to use her foot even though it hurt for now. They taught her self-hypnosis, deep breathing, relaxation skills and even introduced her to aroma-therapy. They made her start using her foot then and there--told us they wanted to boot and crutches gone ASAP. The psychologist met with her for a bit. We were at the appointment for about 4 hours, but it was so worthwhile. We got on a plane the next day for a trip to AZ; this weather is also very healing. She has been walking on her foot using the Lidoderm patches they prescribed. She has barely used her crutches here--only in the morning when she's having a flare. The color in her foot is looking much better and she's not complaining of the pain nearly as much. The doctor's had reassured me that she would probably get better pretty quickly (compared to me taking a year and a half). I am so happy to see her walking again. I really think she'll be okay.

Boston
 

I know someone who had great success in Boston...Her son is now playing football again! I can put you in touch with her if you want-

Congradulations!!! And did everyone in the Upper Midwest catch that name?

Children's Hospital Pain Program in MPLS

.

Mike

Thanks, Mike. They were just fabulous!