[Millerprof]

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?

[daylilyfan]

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.

[AintSoBad]

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

[fmichael]

Originally Posted by Millerprof

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?

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

[kathy d]

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

[SandyS]

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

Originally Posted by kathy d

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

[loretta]

Originally Posted by SandyS

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

[Millerprof]

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.

[debbiehub]

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-

[RNcrps2]

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