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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board
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Old 10-14-2009, 05:22 PM   #1
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13 year old daughter diagnosed - advice??

Hi all. I am mother to a 13 year old daughter that was recently diagnosed with RSD. She had an accident while driving an ATV in August and fractured her leg, foot and ankle. Everything appears to be healed or very close to healing, but of course she still has lots of pain and is unable to move her foot or put weight on it. She is scheduled for a nerve block next week and she started taking Lyrica. The Lyrica has helped reduce the pain some so that is promising. My main question is what kind of doctor usually oversees treatment for this? We are mostly seeing her orthopedic surgeon. Should we try a neurologist? I just feel really lost and I am hoping a doctor will take charge and give us some kind of treatment plan. I have also read about a program at Seattle Childrens Hospital. Do any of you have experience with that? I wonder if it's too early to try something like that?? We live in Texas so it wouldn't be ideal, but I just feel a sense of urgency to get this under control while she's still in the first stages of it.

Thank you for any input - I feel relieved to have found someone to talk to that KNOWS! Most people have never heard of this or are severely misinformed!

 
Old 10-14-2009, 09:49 PM   #2
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popstarrdiva HB User
Exclamation Re: 13 year old daughter diagnosed - advice??

Ddd15!
Welcome. Sorry for the occasion, but welcome...
I am so sad to hear about your daughter. I got it at 26 which is so young, but 13!!! I can't even imagine it then...
Best news is that she has a very decent shot at Remission because she is a child and it was caught early on.
First thing to know.. This is not like Cancer or MS, most Dr's don't know what this is or what the current info is. Read, learn + know what this is. You need to know what your daughter needs to do because the sad reality is that no one knows what this is.
I saw a Rheumatologist. I am now seeing a Pain Dr. Stick w anyone who knows what they are talking about.
Search like the RSDSA and PARC for true + valuable info.
Dr. Hooshmand + the RSD puzzles + get the 2 books Living w RSDS + Positive Options for RSD.
She needs to stay calm + positive. A strong mindset is what is needed to conquer. Lyrica will help. Nerve blocks...Epidurals helped me the most. DO NOT let them do a Sympathectomy or Chemical Sympathectomy....DO NOT let them put Phenol into her no matter what.Epsom Salt Baths help w the pain + reduce swelling also help for movement. She will need physio ASAP. Immobility only makes this worse....
I don't want to overwhelm. Start there + let me know if you want more ideas.
Best of luck

 
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Old 10-15-2009, 06:54 AM   #3
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Re: 13 year old daughter diagnosed - advice??

Thank you for your reply. I know I have read a lot about casts and such not being good - she is in an air cast right now. Although, she rarely takes it off. She can't bend her foot, or put any weight on it so I know she leaves it on for protection. Her ortho told her to leave it on and that we shouldn't start phys therapy until the pain was better - that worries me because I feel we need to start ASAP. I am trying to get an appt. with a Pain Mgmt - anestisiologist and I'm hoping he will be more knowledgeable about this. Her current dr, the ortho, did seem to know about it but he is probably 70 years old and I don't know if he keeps current on things like this.

I know I've already brought up out of state clinics that specialize in this and I'm really interested in going somewhere that will deal with this head on. Also, the fact that they would specialize in pediatrics is something I think would be beneficial. I hope someone on this board can offer an opinion on this. I did ask her ortho and he didn't think it was necessary!?

Oh - one more...do doctors still think this has a psychological connection? Her doctor is really pushing for a psych consult. I feel like the rsd comes before the psychological effects - her doctor feels like the psychological conditions can bring this on.

Thanks for reading all this!!

 
Old 10-15-2009, 07:11 AM   #4
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popstarrdiva HB User
Re: 13 year old daughter diagnosed - advice??

Get a new Dr! Some doctors believe that this is psychological or that full body doesn't exist or that spreading is impossible.... Blah blah blah....Not true..
RSD often causes psychological issues because it is the worst feeling fighting the whole world. Trying to explain to family + friends and them not believing you or just thinking you are lazy or should fix yourself etc.....
I never broke anything so I do not know about movement of something broken....
Maybe Epsom Salt baths still for swelling + pain just don't move it??!!
Number one thing you need to do is get a referral to a pain Dr....then EDUCATION so that you do NOT allow a dr's ignorance to damage your dr. You need to be the expert here becaue most will not know what is truly best for your child. It is shocking and that is what we are all trying to do is educate because of the fight against the system. Just be careful about it because you don't want to be labelled a "problem" parent or whatever. An amazing Dr in RSD is Dr Schwartzman look him up on PubMed.... He is tHE international specialist. He has a 2 year waiting list. Get yourself an appointment now!
In case you decide to do Ketamine or anything else. He is amazing. I came down from Canada and he was worth every penny and I do not have to pay for Dr's.....
The pain cycle is this. You step on it it hurts. You don't step on it the pain gets worse + worse + worse.....
Good luck searching. Your daughter is lucky to have you

 
Old 10-18-2009, 06:34 PM   #5
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Re: 13 year old daughter diagnosed - advice??

I can't tell you how much I needed to hear that she is lucky to have a mom like me! Thanks. I was really feeling down. We are also dealing with a 21 year old son that has vanished - moved to another state 2 months ago and called once!! Very sad.....anyway.....Thanks!

 
Old 10-18-2009, 10:50 PM   #6
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popstarrdiva HB User
Re: 13 year old daughter diagnosed - advice??

Ddd;
I am glad I could help... We are all here for each other because other people just do not understand. I am sorry for the stress of not knowing where your child is. That must be unbearable. I am sorry for your child with RSD. Your plate is full. Mindfullness Meditation really helps me for pain as well as strength. You are really going to need a lot....
Best wishes

 
Old 10-18-2009, 11:09 PM   #7
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RoseinSanDiego HB User
Re: 13 year old daughter diagnosed - advice??

Hello ddd15,
Very sorry to hear that your 13 year old daughter has RSD. I was diagnosed in 07 and have been taking Lyrica along with Cymbalta. I've put on quite a bit of weight, so don't be alarmed if that happens. Most of our medication is considered "weight gainers". This board has been a source of comfort for me because everyone I've encountered is very kind and understanding, and they've got experience with this disease.
Take good care, and I will say a prayer for her -- Best of luck with the block.
Deb

 
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