NeuroTalk Support Groups - Info needed my 14yr old has CRPS

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - Info needed my 14yr old has CRPS (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/108295-info-14yr-crps.html)

I'd definitley get her to join the site if she can. I remember when I was first diagnosed with RSD, I had my mum post everything for me because I didn't want to talk to anyone and was in denial about my RSD I guess but it really helped when I finally opened up and started posting. My mum still posts sometimes but if I have any questions, I normally post them myself now that I feel comfortable. I'm not sure what i'd do without everyone here - they've all helped me so much and it's so nice being able to talk to someone who truly understands what i'm going through.

I'm glad your daughter is having PT. I know how painful it is. I went through 2 intense PT programs and spent hours crying because of it. The PTs told my mum to go out of the room because if she saw how much pain I was in, she'd probably want to take me home but that it was probably the best thing for me. I'm glad I stuck it out because without it, I wouldn't be walking now but it was absolute h*ll! Just remember to listen to your daughters limits and if she doesn't feel able to do something, don't force her too much - weve learnt that theres a fine line between doing too much and doing too little.

Best wishes to you both! Know that i'm here if you ever want to talk!

Quote:

Originally Posted by Cassmom (Post 597214)

We are goign to PT three times a week now and doing exercises at home. Sometimes I feel horrible for making her do the exercises because I can tell how bad they hurt her. She hasn't got on this site yet I was wanting to make sure it was a safe place for her to read before I let her get on here. Everyone has really been suportive and I plan to show it to her this week

I'm 17 and I have had RSD/ CRPS for 3 and a half years now. I suggust getting your daughter on this site and letting her talk to US. Me for one becuase are close in age and I got my RSD at the same age as her.

Hi,

You spoke with my mom in California I believe last week and we were considering ketamine invusions. I went through my second infusion yesterday and feel better. It is raining over here and my arm is still extremely sensitive to the cold but it does feel alot better for the most part. the burning has calmed down alot. Thank God and my parents for allowing me to do this. does your daughter talk to anyone that has rsd her age, i know i am 4 years older than her.. but feel free to give her my email.... if she would like to talk. i have my 3rd infusion next week.

Quote:

Originally Posted by SandyS (Post 591449)

Hi Cassmom,

My name is Sandy and I also have a 16 year old daughter with RSD/CRPS, finally diagnosed in December 2008, but sick for 6 years. I'm sorry I wish that I could tell you that this is going to be easy, but, it isn't. Like I tell every other parent on this board the first thing you need to do in school is to get her a 504 Plan, or even better an IEP for other health impaired. Protect her immediately. DO NOT WAIT! She will miss a lot of school. If she is in Honors classes or AP classes there are laws that protect her under IDEA and 504. Get that protection right away...That will be the first advice that I will give you while she is in the beginning stages. If you would like me to post web sites for you I can. This will get overwhelming. Just remember you are her advocate right now, take the great advice from these wonderful people, they know what they are talking about. And they are also a great support group for us mommies. I don't know what I would have done without these caring people. My daughter did two three week Pain Rehabilitation programs. She has also undergone Ketamine Infusions, which have so far been successful. God willing they will continue to work. See about getting her someone to talk to, keep an eye on her and make sure that there is no depression. They tend to start losing friends. Keep a watchful eye and tell her everything is going to be alright.

Keep praying, keep your faith because it will be tested, I will pray for you that God will give you the strength that you will need to conquer this dreadful disease. I haven't been able to hug my daughter for many years, my heart breaks for you. As Loretta always says soft hugs to you.

:hug:

SandyS

Quote:

Originally Posted by snowboarder13 (Post 598728)

Hi Cassmom, and welcome to you and your daughter. I am so sorry it is under these circumstances. I'm the Mom who got RSD 15 years ago when my daughter was 15. I wasn't diagnosed for 4 years. My daughter took me to pt for a year and I went into remission. My RSD came following surgery. I had remission twice for at least a year because of physical therapy. It was very painful. I went to a massage therapist before each physical therapy. Even though I had to pay for it, I believe it helped me in pt and also helped with desensitization. I don't have touch sensitivity like so many have, because of massage therapy. I still find massage therapy very helpful. When I was diagnosed full body RSD, I was recommended to a psychiatrist. I have found counselors are not all compatible, but I found one on my own that is a jewel.
I believe I am mobile and better because of my new Dr. and his knowledge. He is not only a psychiatrist, but a neurologist, and a pharmacologist. He does studies for pharmaceutical companies. Having someone at a time I was going thru grieving process was so important to me and helpful. Also having someone to get me on the right meds was wonderful. At one time, my toes were turning upward, off the floor. He had me exercising dailey in the pool and in 4 months my toes were touching the floor again. I went thru involuntary electrical shocks, jerks, and spasms and the right meds totally stopped those dailey spells. Then I gradually went off of them and the shocks, jerks didn't come back. It was a ortho hand surgeon for sports injury group in a different state that diagnosed me, within a minute of seeing my hand and following up with nuclear med test for verification.
Something that has helped me with my feelings and emotional pain is journaling. You might buy your daughter a journal and encourage her to write her feelings down and her privacy will be respected. I saw a therapist for 2 plus years when my parents died. I was 25 when my Mom died and 31 when my dad died.
I didn't let my daughter see me in pt, as it was torture.
It's good you checked 'us' out before telling your daughter. There are wonderful compassionate people on this site. Please give your daughter soft hugs, :grouphug: loretta
Please take care of 'yourself' I know this is very difficult for you seeing your daughter in such pain.

Hi Hannah,

I am so glad to hear that you are getting the Ketamine Infusions and there is some relief. Lindsay had the three infusions over three consecutive days. She is doing well, has a virus right now, she still has pain in the original ankle that has the RSD. But, her arms and hands no longer have the pain or sensitivity. Let me know how you are doing, send your email to my PM and I will give it to Lindsay. Feel better sweetie and if your mom needs to talk PM me and I will give her a call.

Much love to you,
Sandy

Quote:

Originally Posted by hannah1234 (Post 598734)

Hello,
My daughter has rsd also. It is very tough as a mom to watch them go through this. If you would like to talk at all i will call you whenever would be good for you. PM me anytime and we could talk or if you need anything else. As moms it helps to communicate with each other. :grouphug: