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ddd15 · 10-19-2009, 08:00 AM

Hi again. I am so frustrated. I'm looking for a doctor for my 13 year old daughter. How do you find someone that specializes in RSD? I have searched and searched the internet. I came across two names in San Antonio, Texas. I called both and was told neither will see anyone under 18! So how do you know if a dr even knows anything about RSD? So far we have seen an ortho that thinks this is real, but also thinks it has a psychological component. He is sending us to an anesthesiologist this Friday for a nerve block. He also keeps pushing me to get her a psych. evaluation. I think I really want her to be evaluated by a neuro - should I just pick a pediatric neuro off a list? I feel really uneasy about our appt. Friday. I asked the doctors nurse about his experience with RSD and she said he's had a few patients with it....is that good enough? Any advice?

harmony85 · 10-20-2009, 06:26 PM

ddd,

Some doctors I swear. lol So what since your daughter is 13 she's to young to hurt,it has to be some sort of mental stress,or something wrong in that manner. I would be grilling the doctor about what all he has seen and make sure he's not in it just for the nerve block money. I hate to sound that way but it's totally eceptable to know everything about the person treating your kid. It's your KID. Come on.
If you have a pediatric neuro I would look into his/her office. See how many patients of theirs have been diagnosed and are being treated for rsd. Any one who is used to dealing with children are usually better when it comes to communicating with kids. It can make your daughter more comfortable and you too. Some states have state websites where you can put in the doctors name and or office if more than one doctor, and see if there has been any big complaints,been sued,investigated for malpractice and so on. My state has a website like that and it really can help when you are looking into a new doctor to make sure you are making the right decision for you and your family. Between that and calling the office, you can always make an appointment for a consult. Consults aren't just for the doctor but for you too. You can make consults to talk with the doctor and see what kind of practice he/she has and how long they've been treating crps,etc. Just be your own advocate. Stand up for your daughter. Some doctors really don't listen to the children so you kindof have to be her voice too. Although your daughter is the only one who knows how she feels,truly. She needs to be comfortable with them and be able to be open and say how she feels.
If it were me I would think about seeing someone who deals with children,only children. I hope I've been some help. You and your family will be in my thoughts. I hope everything goes smooth for her on friday

Take care and stay warm,
Deanne

aicirtapo · 10-21-2009, 12:20 AM

If she does have RSD she needs to see a Pain Management Doctor who is generally an anesthesiologist and specializes in Pain Management. To be diagnosed I did see a Neurologist but honestly there were no tests he could give to determine whether I had it or not. It is a description of the symptoms and the fact no one else has been able to solve the problem. (my phsiotherapist was the first one to suggest RSD but my GP and Orthopedic docs dismissed it). Most doctors do not fully understand RSD or CRPS so you have to get someone who has treated patients and understands what to do and not do. There is nothing wrong with a psycologist seeing her. If he says there is no psychological problem then you are more likely to get a definitive RSD diagnosis. It is indeed unfortunate that doctors think there is something mental going on and we have to fight to be taken seriously. I saw two neurologists and one was a joke - handed me a list of pain medications and told me to take my pick - that one was as good as the other and I would just have to put up with it. It was a Pain Management specialist (anathesiologist) that got me on the right medication (Lyrica and Clonazepam) and lucky me I can stand water pressure and find exercise in the water and stretching after takes away much of the pain and desensitizes my nerve endings. Don't ask me why that works but it does for me. I wish you the best in your search.

ddd15 · 10-21-2009, 07:12 AM

Thank you both for your input. It really helps to share my thoughts and concerns with people that know! As far as our search for a neuro - I guess I was just hoping to find one that really understood RSD so he could help guide us and oversee her complete care. Right now we have her ortho kind of doing that and I don't know if he really understands RSD. On the advice of a friend, I called my insurance and asked for a case manager. I told them I was having trouble finding pedi. docs that knew enough about RSD. I also asked them to help me find a "center of excellence" for RSD. We'll see what they come back to me with.

Thanks for listening!!! I hope someday I can share a positive story that will help someone out!

popstarrdiva · 10-22-2009, 05:17 AM

Ddd15;

I know I wrote suggestions to you already, but did I mention checking into the RSDSA to check for a Dr? They are the RSD Society of America. They would be your BEST bet. A psych evaluation..... Ok so if she has RSD should come back fine, but do you know how many people are told their pain is in their head. What if the psych says your child has issues? That will only cause you more problems. Great if it comes out fine, not so if it doesn't.......
Just something to also weigh out for yourself.
Sympathetic nerve blocks are also like a test for RSD. I think you are better doing that because that will prove it and nerve blocks are treatment for this illness anyways.

harmony85 · 10-22-2009, 01:17 PM

I agree with the last post. If the nerve blocks don't help or make things worse than usually that tells the doctors right there what is going on and then you're diagnosed. Some states (like mine) do nerve tests too. They are not fun at all and quite painful but between the two it really shows the doctors the rsd.
The nerve test they do here in washington is where the doctor hooks you up to this machine and then starts poking with a needle like pin. It tells how much the body reflexes and or tightens because of "pain". They do the areas that don't hurt first and with me since the rsd is in my left leg they did my right first. I couldn't even feel the pin on my right leg.Didn't even know they were doing it. But when it came to my left leg. Well lets just say it didn't go well.
You may want to talk to the nero when you go in about the testings and if they do anything like that. I'm so sorry but I don't remember the medical term they used for the test. It's been a LONG time.

I hope I've been a little more help. Just one more thing to think about.
I really agree with the last post on going to rsdsa. They can be wonderful and have lots of information. I don't know why I didn't think about that before. lol Probably the pain meds. lol
Take care and stay warm,
Deanne

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