Update on my 16 year old daughter after ketamine infusions
 

Hello all,

I hope this finds you all some hope. As I have posted in the past few weeks, my daughter underwent ketamine infusions with Dr. Kirkpatrick in Tampa on July 28, 29, and 30th. She underwent the three day four hour infusions.

They were difficult, she went into the dis-associative state, but it wasn't horrible. She seemed to do very well under the Ketamine. It has been 21 days and it is unbelievable. She is laughing and smiling all of the time. Going for long walks, hanging out with her friends again. We went to her open house at her high school last night and I couldn't keep up with her while we were walking from class to class. I actually had a blister on my own foot from walking so fast. She was up and down flights of stairs. I had my daughter back last night the one that I had 6 years ago before this horrible disease hit her left leg.

Even though things are great right now, I am so scared about tomorrow and the next day and the day after that. I know that this is a day by day disease, but I was hoping that you could tell me how to make it though this year. What if it comes back full blown again, how do I help her? I feel so much hope but at the same time I have this uncontrollable dread in chest that it isn't going to last. How do I keep the hope?

My prayers are always with all of you, I pray for a cure and for your pain relief.

Much love, :hug:

Sandy

I'm glad things went well for your daughter. My motto is don't borrow trouble. Don't worry about tomorrow live in today. If it comes back and it may then you can deal with it then.
Enjoy your daughter they grow up way too fast.
Take care
Sherrie

hope
 

There is always hope. I wish nothing for the best for you and your daughter. If it comes back deal with it then. In the meantime enjoy the time you have with the old her. You can't change what will be, you can only live in the present, and right now that is a good place for you and her. Don't waste it!!!!
Live for the present. The future isn't up to us.

God bless you and all the best for your family.

I am so happy for you! What an awesome outcome!

Do you know what the statistics are? Have you asked her doctors what her chances are for complete remission if she follows all guidelines for follow up booster treatments, etc?

She is young. And it sounds like she is physically and emotionally strong. I can understand your concern that the past will come crashing back. Check with her doctors (sounds like you have some of the very best - lucky you!!!) and then perhaps you will be able to relax some.

Wishing you the very best. Sandy C.

mathew 6:34
Do not worry about tomorrow , for tomorrow will worry about it self, Each day has enough trouble of its own,,,,,,,,,,,,,,,,,,,,,,,Trust in God,,,Im so glad the infusions were a success,Praise the Lord and give him all Glory

Hi Sandy,
What great news about the success of the treatments for your daughter !! You and your family must be ecstatic with joy and relief..I can visualize the happy laughter from your daughter!

Your daughter is young and resilient and this may be what was needed to quell any more severe bouts!

Your worry is so well understood, but as the others have said, live each day one at a time, live in the moment and be mindful of the joy that is happening now.
If things change, you will take it one day at time at that point as well !!
Use your energy to enjoy this wonderful outcome! :hug:
Hope4thebest

Great news! I'm very happy for your daughter and your family, congratulations! She must be on cloud nine for sure and full of energy to burn. Maybe since she took well to the infusions, booster shots or oral ketamine in the short term will keep her in remission forever? I'm sure Dr. Kirkpatrick brought this up to you?

I'm so happy your daughter is doing well! I have a son who is 17 and broke his right tibia, compound fracture. This happened in the fall of 2007 during football. He has had 4 surgeries and needs one more. Seeing your child in pain is one of the most horrible things a parent can go through. I wish you and your daughter all the best of health and luck!

I was scheduled for the ketamine infusions to be done in September. I cancelled. From all I have heard and read, I am not really a candidate. I think I was just being put in for experimental purposes. I know there are MANY who need this done. I am very confident in the procedure but I am not in so much pain that I feel I want to do the proceedure. I have heard great things, and not so great things. I am the mother of 4 and can't take the chances of having my "brain scrambled", which is what I was told by a health care professional. I know this is a necessary procedure for many, but, I think it needs to be carefully thought out.

I am so happy that your daughter, being so young is feeling so well. It is horrible to see our children in pain! My son spent months in a hospital bed in our home unable to walk! I understand the agony and I am so happy for you that she is doing well. I will keep you in my prayers! I have heard of your doctor and understand he is very good! Best wishes and enjoy the rest of the summer before school starts! Linda

Sandy,

This is a celebration occasion, for your daughter, you and everyone,here.
BE HAPPY!
http://i41.tinypic.com/zk20za.jpg

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

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