[bigtoyzracing]

So I am new to the RSD and CRPS forum. So hello. I am actually on here for a friend trying to help her with whatever information she can get since her internet access is limited and so is the knowledge of RSD/CRPS by her available doctors. Her 11 yr old daughter was recently diagnosed, and it seems like the recovery outlook on kids is greater the sooner you get into getting stuff done. However we are hitting a lot of walls. All the hospitals have a several months waiting list, and it seems like a lot of people are unwilling to treat kids. Additionally, it appears that a lot of places specifically offer "pain management" opposed to treatment. I do find lots of information on physical therapy and such, but am trying to find a good doctor in their area that treats kids. They are in Southern Illinois, with the closest major city being St. Louis. So if anyone knows of anyone that isn't just in the pain managment business, but more in the fix the problem business please let me know. And quite possibly I am still pretty ignorant to the CRPS situation, so correct me if possible because whatever info I can give to her is more than we had to start with. Thanks!

[Jomar]

Did the girl have an injury that set off the RSD?
How did it come about?

If there's a possibility of something being misaligned or pinched from a fall, sport or some accident, I would try that route first, with advanced PT or chiropractic care.
If she is in pain, that has to be managed also.

I hope the members here can suggest some Drs names for you.

[bigtoyzracing]

Originally Posted by Jo*mar

Did the girl have an injury that set off the RSD?
How did it come about?

If there's a possibility of something being misaligned or pinched from a fall, sport or some accident, I would try that route first, with advanced PT or chiropractic care.
If she is in pain, that has to be managed also.

I hope the members here can suggest some Drs names for you.

Dang it, I had a nice well thought out response, and then my internet disconnected when I hit submit. Either way. Thanks for thr thoughts. I will definitely pass along the idea of Chiro/PT so at least they are doing something aside from twiddling their thumbs and watching their kid get worse while they way for these super hospitals to get them appointments.

Here is the quick story. Unfortunately I am across the country so my detail might be a little vague but this is what I have been able to put together so far. Their daughter was doing alright until they noticed she was getting incredibly blurry vision and it was worsening, and then severe headaches and pain in her left foot. (I should say it started with the pain in the left foot, then within 24 hrs the other symptoms appeared) Within a week she was no longer able to walk due to the pain. Initially they took her to a reg Dr. who referred her up to St. Louis neurology where they did a panel of blood tests, scans, etc. Initially they thought it was a brain tumor, but no tumor was located. Then they thought maybe it had something to do with her eyes ( not sure where the foot would have fit in there, but I'm not a dr, so go with it) They couldn't figure out anything there. Back up to the Neuro in STL. Nothing. Blood came back fine no issues there. Scans still clear of tumors. Then her in small town their dr. came up with the CRPS theory, and as it's progressing it seems the best fit. The pain has moved from one foot to both and seems to be progressing. All and all time elapsed is approx 6-7 months. Their doctor determined it to be stemmed from an ankles sprain and now they are getting tossed from one dr to the next not really getting anywhere. (YAY) Thanks again for responding, and thanks everyone for any help you can provide.

[LIT LOVE]

Did you see this thread? It's actually about Children's RSD programs.

http://neurotalk.psychcentral.com/thread163813.html

[Jomar]

And check the sticky threads near the top of the RSD forum or use the search tool for specific things you want to read more about.

RSD or CRPS diet - also supplements
HBOT = hyperbaric oxygen
warm water pool therapy ( 80 degrees I believe, but not sure of the rec temp for RSDers)


I don't know if they try stellate blocks?? for kids or if that is an older therapy that isn't used as much anymore....

Does she still have good use and mobility? At some point therapy may be needed to keep legs/feet mobile.

[bigtoyzracing]

I did see the link provided, but majority of those locations are on a wait list. Pretty much and children's hospital is still a few months out and of course really far, which is ok, but ideally closer. Also the dr at drexel doesnt treat children unfortunatelt. i passed along his number to their pediatrtion and that didn't work out so well. But now that I have reread it I did see a few other names on there I will follow up with. So thank you for sending me the link again.

As far as her daughter. It is no mobility from the knees down and her eight hand has better and worse days. Her jaw also has pain and her hearing has become very sensitive.

I will check the stickies and diet topucs. I was interested in the HBOT but the dr I found in florida requires money up front and insurance won't cover. of course uf it seems like the best way to go we can don our aprons for a good old bake sale (it possibly more lycrative fundraiser) lol. I will keep digging everyone. Thanks for your thoughts.

Oh and while I'm asking, do most patients do pt with their rsd Dr or with just a good therapist? The thought there us maybe finding a therapist who can work in some extent of conjuction with the Dr so maybe less travel.....

[ginnie]

Welcome to Neuro Talk. You found a good site to help your friend with RSD. I am sorry this happened to a child. I have long history with the St. Louis Area. Dr. Virginia Weldon, may still be at the Childrens hospital in that city. I would seek her out as a possible resource for information. She was head of the teaching hospital after a long service in Neurology as a doctor. She took care of my daughter for years. The hospital is top notch, and I can't believe they would not have a department that is involved with RSD. Please do have this child seek medical attention quickly. I have just discovered I too have RSD in my injured ankle and foot. I do know how painful it can be. With a case of some injury, our community leader is correct, the sooner the issue is addressed the better for this child. This can be helped. Thank you for looking into this on Neuro Talk. We will all be here to support you and this childs family. Others will be here to talk to you too. ginnie

[Jomar]

I think most Drs refer out to a therapist, unless they have one on staff or nearby that they work with often.
But an expert PT with a good awareness of RSD is needed, if you can't find one that is an expert at RSD therapies..

[catra121]

I would definitely get her on those waiting lists while you guys are searching out other options. I would also suggest starting physical therapy now because I'm sure you've seen in your reading that RSD is a use it or lose it sort of condition. I know it's painful but if you can find the right physical therapist they could really help get some of that function back and stop the vicious cycle of not moving because it hurts, and it hurting worse because she is not moving. Those children's programs, from what I understand, have intense physical therapy as part of the treatments. This is probably going to be the biggest key to treating her RSD (it was for me).

You've already gotten great advice from everyone else. Please keep asking questions as you think of them and we will all do our best to try and answer them based on our own experiences. You are a VERY good friend to be doing this for your friend and her daughter. Don't we all wish we have supportive people in our lives like you.

[reluctant@thetable]

I've read everything that people have suggested- good suggestions.

When it comes to kids, their safety and their health, I become a bear of a mom. IF it were my child, I would check out the reputation of the pain clinic at the Children's Hospital. Ginnie suggested the St. Louis Children's Hospital with a possible physician suggestion. (Dr. Virginia Weldon). Because it is very important to get treatment asap (I know because I had to wait months to get treated and I was always on a waiting list but never called and my crps became sympathetic independent pain), I would take her (the daughter) into the emergency room at the Children's Hospital. Then they would have to accept her as a patient with a referral to the hospital's pain physician. I would think this would speed things along significantly. Just saying, that's what I would do.