Sunday, May 17, 2009
Prior to the Rotorua booster infusions, quite a few symptoms that ketamine had helped Emma with has started to return:
- hands: shakes, pain, weakness, sweaty, cold
- skin rashes / itchiness
- more pain
- poor sleeping
- eating difficult especially in the morning.
The pain in her right leg and foot was still always rated at 8 or 9 out of 10.
The booster infusions went well but again had no effect on right leg pain and marginal effects on other symptoms.
Luckily Dr Neff and Dr Schwartman are now communicating on the best course of action. Dr Scwhartzman still states that the best chance for Emma to beat the CRPS is to have the 5 day ketamine coma (which he calls a nap!). We know that the coma treatment in Germany is on hold and that the only other option is in Mexico and that Dr Schwartzman's paitents go to Germany.
Monday, April 13, 2009
yay - wine on the way back- haha
the pain in my foot and left wrist is the same but my hands and both legs have gotten much better, especially with sores healing with better circulation and playing the piano feels so different - it's great!!!
so, all in all, the trip was a success!
love to you all
Monday, April 6, 2009
We are packing up our bags tonight and getting ready to drive the two hours up to New York city tomorrow morning where we will be staying two nights. On Wednesday morning we will fly out of JFK Airport to San Francisco and stay there for two nights before flying home late Friday night. We will be arriving in Auckland early Easter Sunday.
Saturday, April 4, 2009
Friday, April 3, 2009
Thank you very much for all your birthday messages and emails.
Thursday, April 2, 2009
Wednesday, April 1, 2009
My outlook on the infusion has changed a little, I think I'm more hopeful and excited about the outcome and also not scared to go to the hospital as I now know what to expect. It's been really amazing for me meeting other people that have RSD, I'd always felt so alone, that no one could understand, but now I'm sitting in a room, daily, with other people that have RSD too and it feels good to be... normal... I guess that's not the right word, but they just know how it feels.
I've made good friends with Bob and Mary, 2 other patients that started at the same time as me and will finish at the same time as well. They make me laugh when we start becoming more conscious, as they too laugh at me when I'm acting "tipsy". Bob and Mary, and the nurses make the infusion tolerable, even funny at times. I must say it is hilarious when Bob/Mary are more out of it than me, so I understand my family and my new found friends finding me funny when I'm a..bit... out of it.
The ketamine is no longer making me feel sick, and though I'm still tired after the infusion, I prefer to stay awake and my spirits are very high with the progress.
I'm quite excited today because my hands are.. different. I thought they were normal before, but now everything I touch is so much different to how I remember. I'm having a lot of fun playing with my hands, it's more exciting than you could think!!! and I thought that they were normal... haha so I'm looking forward to the next coming days hoping the pain in my foot will subside a little.
I can't wait to get home
All my love
Tuesday, March 31, 2009
and was surprised that she could still breathe there. Perhaps it was the dark side of the moon? She walked up the stairs of our house afterwards though was a bit wobbly. She has not slept this afternoon but instead has read her new book "New Moon" (a part of the "Twilight" series). We've all had a quiet day reading as it was cold out again. We've just closed off the day toasting marshmellows on the open fire.
Monday, March 30, 2009
Saturday, March 28, 2009
It's now 2.30pm and instead of sleeping Emma is keen to go for a look around the neighbourhood so we are off shopping!
Friday, March 27, 2009
Thursday, March 26, 2009
2moro I'll have the maximum dose of ketamine (200mg) so hopefully I'll cope with that dose and can continue with that dose until the end of the treatment.
Sleep back at the house after treatment has been amazing, i haven't had such a good, uninterrupted sleep in years.
Looking forward to coming home and seeing more results from the treatment (hopefully a decrease in pain!!!)
Love to you all,
The weather is improving - temperatures have risen quite a bit. Today's walk for Nikki and Luke to see the Liberty Bell while Emma had the infusion was at a relatively balmy 4 degrees C.
Wednesday, March 25, 2009
Tuesday, March 24, 2009
We are renting the upstairs section of a house in Mt Airy - Germantown, Philadelphia. The place is working out well but a tad chilly! A couple of electric heaters and a big open fire that puts most of it's heat up the chimney! Spring seems to be here according to the trees beginning to bud & blossom but there is a cool wind most of the time. It takes us about 30 minutes to drive down to the hospital in the center of Philadelphia.
Emma has slept for a few hours this afternoon after the treatment and is back to her cheeky old self and her usual appetite for ice-cream has returned.
Strollin' in the 'hood
Monday, March 23, 2009
it's really cold in philadelphia and can't go outside without millions of layers!
Went to Washington DC in the weekend... was even colder than phili if that's possible.. got too cold an had to go back to our hotel, well i did any way.
The white house was much smaller than i expected... and really white!!! spose that goes without saying though.. there were secret service people on the roof, kinda freaky.
went to the art museum where there were really cool photographs by Robert Frank.
I got to feed this really cute squirrel so i'll post a few photos of it... and other cool stuff we've seen.
Treatment starts tomorrow so pretty hopeful about the outcome :D
Thursday, March 19, 2009
Monday, March 16, 2009
Sunday was a sight-seeing day spent covering Down Town LA, Hollywood, Beverley Hills & Santa Monica. Also saw some famous stars on Hollywood's Walk of Fame.
Thursday, March 12, 2009
So tomorrow we fly out Auckland to Los Angeles.
Sunday, March 8, 2009
Saturday, February 28, 2009
Emma and Michael (bf)
Emma and Nikki (mum)
Aleishia, Emma and Luke
Ball season! Note the high-heels! Emma loves her high-heels and finds the angle less painful for her foot. We worry about risk of injury but Emma insists.
Emma has suffered from Complex Regional Pain Syndrome (CRPS) or Reflex Sympathetic Dystrophy (RSD) since she was 10 years old (now almost 17). The pain in her right foot is constant and debilitating and severely affects her quality of life. It is becoming increasingly difficult for Emma to continue with her schoolwork as the pain continues to increase and now affects her entire right leg and back. After many years of unsuccessful treatments we have contacted Dr Robert Schwartzman in regard to the research program he is conducting for CRPS sufferers using ketamine for treatment. He agreed to see Emma when she was 17 and so our plans to travel to Philadelphia began to take shape.
- An overview of ketamine infusion therapy (Emma will hopefully have the outpatient protocol described in the article)
- ketamine research papers (search for ketamine on the page)
- Case report: Complete recovery from CRPS following ketamine treatment (my favourite article!)
It was not easy to make the decision to take Emma to the US for treatment which is still in a research phase. The decision for Emma has been easier and she has not wavered from her immediate desire to try the new treatment. We are under no illusions that this treatment is a magical cure but it is certainly a path that is producing some excellent results for many who suffer from this crippling disease.