Sandy,

This is a celebration occasion, for your daughter, you and everyone,here.
BE HAPPY!


I understand your concern; however, RSD can go into remission, and with the ketamine treatment, your daughter is herself,active, once again. We have to learn to accept good,too. I think we forget how to do that, when we are bombarded with the harsh side of RSD. Enjoy this victory, my friend

love,
Dew

Dear Dew,

You are such a doll, I am still doing the happy dance, thank you for always being so up lifting. I hope you are still finding sleep. My prayers are with you my friend.

Sandy

[QUOTE=Dew58;556389]Sandy,

This is a celebration occasion, for your daughter, you and everyone,here.
BE HAPPY!


I understand your concern; however, RSD can go into remission, and with the ketamine treatment, your daughter is herself,active, once again. We have to learn to accept good,too. I think we forget how to do that, when we are bombarded with the harsh side of RSD. Enjoy this victory, my friend

love,
Dew[/QUOTE]

Hi JimKing,

Yes, Dr. K. did talk about boosters, if need be, but because of her age, she has a strong chance of going into full remission. She is scheduled to go back for her follow up, and I will ask about the oral Ketamine. thank you for your advice and kind words. All the best to you .

Sandy

WOW, that is great news!!! I can't tell you how happy I am for you, your daughter and your whole family right now - you must be all thrilled to bits!!! It's SO good to hear a positive story for a change and it gives me hope that things can get better one day too! I really hope your daughter will continue to get relief and that she will be able to put the RSD behind her and lead a normal, pain free life like she so desperately deserves!!

I agree with the others about trying to live for the now and worry about the later when/if it happens though I can understand that you must be very scared and think you are doing the right thing by knowing what to do should your daughter ever flare again. My Doctor always told me that if I went into remission, the further away from flares you can get, the less chance you have of the RSD coming back. I know of some people who have had Ketamine infusions and had a flare and have gone back for another infusion so maybe that is something you would be able to do too, should you have to? Also, if your daughter has a flare, make sure she keeps moving as much as possible even thought it's painful - I was always told that was the best thing you can do to try and prevent the RSD from getting any worse.

I really wish they'd do Ketamine infusions over here in the UK but they don't and wont consider them on anyone under the age of 16. It has always been something my mum and I have looked into. We are still looking into the details of the Ketamine infusions in the US (thanks for the info you sent!) and are going to try and speak to my doctor about if when we see him next.

Please pass on my best wishes to your daughter and tell her I hope she continues to get relief and that I am so happy for her!!

Take care of yourself!
Alison

I am so happy for you and your daughter. Lord willing, she'll not have to ever worry about the pain again.

I'm another one who's so happy to hear of her success!

I've had mixed results but my best was after my 2nd infusion, where I had 10 months pain relief. The one thing I have to stress is physio, physio, physio.

I worked hard to strengthen my arm and hand (as that was all that was affected at that time) while the pain was gone and I'm so glad I did. If I hadn't have done that, I'd be in a wheelchair now as there's no way I could have used crutches when it spread to my leg.

We also did a lot of touch and massage, to desensitize my hand and arm. Before that infusion, noone could touch me without causing pain, now I'm 5 years past that and I can still handle touch. My kids can hold my hand and I don't wince when someone touches it.

I hope she has a long and happy time of remission from this, but keep going with strengthening and moving her limbs so even if the pain does come back, she's stronger and won't be so limited by it.

Best of luck with it all and don't worry about the future- enjoy every day she's given, make the most of it, and drink in all those smiles! Don't worry about her overdoing it, just let her enjoy what she wants to do, as she'll be storing those moments in her mind to remember should the pain all come back. They'll tide her over for a long time, believe me!

x Kate

Hi Kate,

First, I would like to say, how happy I am for you, and your remission. Five years is a very long time. Lindsay is still doing well, as I have told others she did have a fall, and has taken some pain pills, but only one or two over the past week. She is still going to school and I am drinking in all of those smiles. It is wonderful to wake up and take her to school and be able to go to work feeling so happy for her. Thank you for your kind words.

Sandy

Hi. I am so happy for you and your daughter. I understand as a mom how this takes a toll on you as well. I think as my mom is my hope and strength I have a few thoughts through the 2.5 years what is working and not. Of course this changes. I agree first to stay in the day. For my body I will make progress to have a back slide so it is very key to not give up hope and remind myself there are up and downs. I encourage you to do for yourself. For the first 2 years of my condition my mom isolated and did nothing for herself. This gave her no break or friend support which is very needed through this. It truly makes me happy that she does for herself. So take a hobby class,get your nails done etc. I know my mom just wants to take my pain away and feels so scared. There were times we had no idea pre dx what was going on cause I had multiple conditions going on. I am older then your daughter so I think had more fears and I know my mom did too but she was my advocate of getting care and staying hopeful. That is all you can do as a mom and be there to listen. I am just an email away if you want any support too or your daughter. One day at a time or for me one hour at a time often

Hi Danielle,

As you know as a mom, there is no time for yourself. I do work a full time job and with the doctors appt. and pt/ot and other various appointments, I am just happy when she finally gets into bed and sleeps.
As you know that is few and far between for RSDer's. But, she is sleeping better since the infusions. She had a fall and has to take some pain pills, but she is still pushing forward. My greatest moments are seeing her smile, it is unbelievable. That's all I need, I promise. I have great friends with whom I receive support. But, thank you for your kind words.

Much love,
Sandy

Remember Ali,

My home is open to you and your mom, if you want to come here for the infusions. You are young and you have a great chance to go into remission as well. Keep your hope, as I will every day, when I DROP TO MY KNEES and thank GOD, for this wonderful blessing. Much love to you and keep your wonderful attitude with life.

Much love,

Sandy
QUOTE=ali12;556428]WOW, that is great news!!! I can't tell you how happy I am for you, your daughter and your whole family right now - you must be all thrilled to bits!!! It's SO good to hear a positive story for a change and it gives me hope that things can get better one day too! I really hope your daughter will continue to get relief and that she will be able to put the RSD behind her and lead a normal, pain free life like she so desperately deserves!!

I agree with the others about trying to live for the now and worry about the later when/if it happens though I can understand that you must be very scared and think you are doing the right thing by knowing what to do should your daughter ever flare again. My Doctor always told me that if I went into remission, the further away from flares you can get, the less chance you have of the RSD coming back. I know of some people who have had Ketamine infusions and had a flare and have gone back for another infusion so maybe that is something you would be able to do too, should you have to? Also, if your daughter has a flare, make sure she keeps moving as much as possible even thought it's painful - I was always told that was the best thing you can do to try and prevent the RSD from getting any worse.

I really wish they'd do Ketamine infusions over here in the UK but they don't and wont consider them on anyone under the age of 16. It has always been something my mum and I have looked into. We are still looking into the details of the Ketamine infusions in the US (thanks for the info you sent!) and are going to try and speak to my doctor about if when we see him next.

Please pass on my best wishes to your daughter and tell her I hope she continues to get relief and that I am so happy for her!!

Take care of yourself!
Alison[/QUOTE]