Very Frustrated!
 

Well...6 weeks now my 15year old daughter has been in a bad RSD flare up. Now school, church or anything. She is just plain miserable. We moved last fall from Texas to Oklahoma and have made 3 trips since Christmas back to Dallas (5 hours) to see her doctor. He is great but has exhausted all he knows to do for her. She just isn't improving. He sent the paperwork to get her into a clinic in Tulsa because he felt like the long car ride did not help her after receiving ketamine treatments. We found out yesterday that they have denied her because she is a child. We can't find anyone in the state of Oklahoma to treat her. No one treats children. Now I am an intelligent person and I figure there have to be people under the age of 18 in oklahoma with RSD who need treatment. Do they all go out of state? This is just crazy! We don't know what to do! The children's hospitals don't have pain management programs and the neuros won't see her....anyone with ideas???

I am so sorry you have to have such a challenge to just get a doctor. Maybe ask your doctor to call the people who denied you and try to get you in. That has worked for me in the past. A doctor sometimes can get more attention than the patient. Keep going and never give up no matter how much they say no. As a mom we become fierce when it affects our child.

This is just heartwrentching news!! As a Mom, this has to be so hard on you.. our children, we part the waters for them and you along with her are in such despair...I, too am with the advice with smile..Please, what do you have to lose by calling and ask if the Dr. can recommend getting her in for treatments..Dr's do have pull... In the mean time..ask the Dr. to also do some homework on your behalf to see and recommend an RSD Dr. in your area...if they can't help you then ask who can!!! Pronto! RSD is miserable... and we really need professionials who care.. walk along aside of us to help us thru our days... I am so sorry.. call them first thing this morning..with insistance..

Let us know how it goes!

Hugz, Kathy:grouphug:

Maybe this will help...
 

I am very sorry about your daughter I also have a 15 year old, not with RSD, I am the one with the RSD but I can't imagine it.

I have had RSD for 6 years and have been seeing doctors in NYC, we are lucky to live close, an hour and a half, away. What I have discovered is that most good teaching hospitals have the best PM Programs. Did your daughter have an inqury? Living in OK demographicly your are in a tough spot but I believe there is a very good childrens hospital in St. Louis also Vanderbelt Univ. in Tennessee. I would try and look in that direction. I have seen a small amount of children in the facility I go to I think you just have to find the right place. I think a private doctor is not going to really be able to do anything. RSD treatments are expensive and it takes a really good facility to be able to treat RSD patients the correct way.

I wish you all the best.

Gabbycakes

Hi. I am sorry your daughter is struggling. I also know how this takes a toll on the whole family. Anyhow Ihave traveled a lot for this condition and care. I am 31 but anyhow my best pain doc was one I found by calling a major hospital in my area and explained my situation to the pain clinic. They suggested a specific doctor and then later I had found someone else who had rsd who had seen him. Truly he was better then some of the weller known rsd docs. So I encourage you to call the major hospitals in your areas pain clinic and your situation. Often if they can't help you they can direct you to someone who can.

Hi,
 

Do they have a University Hospital in OK. I personally don't like them because they are a teaching hospital. You have to watch and make sure they don't make a guienna pig out of your daughter. The one we have in Denver is a joke but others say they have good luck with them.

My second suggestion is find a good PCP there. You are going to need one for the family anyway and then he might be able to get her into places that you yourself can't. You might find one that knows something about cronic pain also. Mine is a PCP/ Sports Medicine Dr. so they are out there.

I wanted to say also that Kentucky has a very good Childrens Hospital with Drs. called Nortons Children's Hospital.

I am hoping though you can find someone close to home. The drives are horrible.

Good luck,
Ada

I feel for you and your loved one! You could check out the RSD/CRPS Treatment Center and Research Institute in Tampa Florida.
http://www.rsdhealthcare.org/

"Additionally, there are children who suffer from RSD / CRPS and receive treatments that are only available through the Institute.
The Institute, under the direction of Anthony Kirkpatrick MD, PhD, devotes significant efforts to educating physicians worldwide on RSD / CRPS".

I hope her flare ends soon.

jim

Have you tried the RSDSA website? Also do not hesitate to call RSD CEO Jim Broach. He will try to help and ask for Dr. in your ares. Do it now!-Fondly-Carol

My daughter sees Dr. Kirkpatrick she is 16 years old and he has administered Ketamine... He does treat children.

Sandy

Hi Mom, I'm so sorry the situation you and your daughter are in. The Cleveland Clinic has a children's hospital. Some with RSD have gone there. If you can find a local Dr. for your daughter that is knowledable about RSD and willing to coordinate treatment with out of state specialist. rsdhope.org is another site that may give you some direction.
Please let us know how you both are doing. your friend and another mother, loretta with soft hugs. I am the one with RSD when my daughter was 15 She is now 30.:grouphug::grouphug:

Another idea, if it hasn't been mentioned, is you could call your insurance company, and ask them for a recommendation.
It seems odd that you can't find a children's Neurologist...

I really wish you and your daughter the best!

pete

I have read that both the Children's Hospital of Philadelphia ("CHOP") and the Boston Children's Hospital - which is located in Waltham, Ma - both have excellent pediatric PT programs geared towards kids your daughters age. See the RSDSA website (RSDSA.org) and search under the "Kids" or "Teenagers" link. There was a good article about the success of the Waltham, Ma PT program within the last 6-8 months in the RSDSA Review magazine.

If you can't find it write me back and I'll find it for you. I truly wish you the best of luck. I have often said that I am profoundly happy that it is me that is sick, not my husband or my kids, I don't think I would be able to stand it if it were them.....please don't forget to take care of yourself, too...XOXOX Sandy

Sandy...
I say the same exact thing...as you..It has to be me that is sick not my kids, husband or anyone I know or will know or will never know.. it has to be me if anyone.... I dare say you have a twin!!!

Hugz, k

Sorry to get off subject. I once called my insurance company for recommendations for my wife, who has RSD, and they told me 3 times they never heard of RSD or CRPS. And that was through a major carrier in which we dumped. That was 3 years ago.

How far are you from Kansas City or Wichita? Is that closer than Dallas? Could you call Dr. Krusz and have him make some calls for you? I'm sure he would. I'm so sorry that you are going through this!!

Well, things haven't change much. She is stiff in a bad bad flare up. It was her doc from Dallas children's medical center pain management clinic who called this local doc and they denied her anyway! Her Dallas doc doesn't know anyone else here in OK so it will be a stab in the dark for any of us if we can find anyone who sees children. I have been called hospitals and clinic telling them our story and I get the same thing "we don't treat children". I finally called OU medical center children's hospital. The do not have a pain management clinic on their site but it turns out they are in the process of starting one. They said they would see her pending her paperwork from her previous doctor. That is awesome! I hope it sticks!! So, we'll see. The problem is she is in so much pain and they can't see her until mid march! We may have to take her back down to Dallas anyway just to get her some immediate help. Poor baby!

That is promising news! I hope it sticks. Good luck. And, please let me know if you need any help when/if you go back to Dallas (or Ok City).

Quick question...did your daughter, by chance, receive an ultram infusion the last time she went to Dallas? That put me in a terrible flare for weeks. Plus, the weather in Texas/Oklahoma has been really unstable lately. I'm so sorry.

That sounds very promising. I hope it all works out for your daughter.

Gabbycakes

Hi. I am sorry she is still in so much pain. I did not think that you could travel. If so I know a teen who went to Rush in Chicago and also Cleveland Clinic. I have also went to Cleveland Clinic and did not have the best results but this teen seems to be doing better. Another thought there is I think on RSDSA site or one of them support groups in all the states. Anyhow I would look under OK and even if it is not in your area maybe call the leader and see if she has any referals of good docs. I did that in MI. I really think referals from patients who are in similar can be a good source

Rsd
 

My sympathy and prayers are with you and your daughter in dealing with this monster. I, too, have a 13-year old son with RSD. I live in NY and recently had him treated at Children's Hospital, Boston for 3 weeks. They work wonders with children. I understand that you don't want to travel, but it might be worth it to give it a try. They do all the leg work for you in getting it approved through your insurance company. The biggest downfall is there's a waiting list. Fortunate for me, my son was diagnosed within 2 weeks and treated within 6 months. He is now pain free. He just went back for his one-month follow-up and he's doing great. He hasn't missed a day of school since he returned home due to the RSD. This is a small part of the rest of yours and your daughter's life. It's worth the sacrifice. There is also an article about it in the RSD Newsletter. It's part of the Mayo Clinic. Good luck and I wish you well.

SO sorry to hear that your daughter and yourself are going through all this right now!:hug:

Please know that I DO understand how frustrating dealing with RSD can be and that I am here for either of you if you ever want to talk (my mum is too - if you want her email address, feel free to PM me :)!). I have had RSD since I was 12 years old and am now 15. It is currently in my left leg and both arms. I have had the same issue as you and your daughter in getting medical treatment. We are in the UK (England) so a lot of the treatments used on adults, aren't used on children due to our health service. It took 2 years for my Doctor to try Ketamine and that is the only medication that helps me - though it only lowers my pain a little and my Doctor doesn't like me taking it often because of my age etc (he feels that it could affect my hormones).

I agree with what everyone else has said, please try and find another doctor. I know it can be frustrating - I saw LOTS of doctors and my mum took me for lots of second opinions to see if anyone had any ideas on what could help.

Have you looked into the Intense Physical Therapy Programs?? I'm not sure if there's one in your area but they have lots of good results in most children with RSD. I went on a 3 week intense PT Course at Great Ormond Street Hospital in London and the PTs there got me back walking. I still have LOTS of pain and am not 'cured' by any means but it makes SOO much difference being able to walk again, even if it is just short distances!

I hope things start looking up for you soon. Please send your daughter my love and best wishes.

Alison

Hope you get this!
 

I hope that you receive this after so much time have gone by! I happene to stumble upon this while looking for Jim Broach's (from RSDSA) contact info, and it just touched me. I practice in Fayetteville, AR (two hours from Tulsa) and may be able to help? I am not allowed to post my e-mail here yet (because I am new) but you can find and contact me on Facebook. MY page is called The Neurologic Relief Center.

Dr. Katinka