What's been happening .............

It’s been nearly a year since we lasted updated the blog and in the last couple of months new plans have begun to take form.

Unfortunately Emma's condition over the latest year has deteriorated rapidly and the RSD has now spread throughout her body. In particular her pain is strongest in her right ankle and left hand. We are making plans for Emma to travel to the USA to participate in a research programme. This treatment option was recommended to Emma a year ago by Dr Schwartzman and has been delivering some excellent results for other patients.

Emma will need to again have pre-medical clearance tests and if these go OK she will undergo a 5 day induced coma in the intensive care unit in Monterrey, Mexico under the direction of Dr Kirkpatrick at the RSD / CRPS Treatment Center and Research Institute in Tampa Florida.

We will continue to update you on Emma’s journey here on this blog.

We have set up a website to help fundraise for this treatment and to raise awareness of RSD. You can find the site here: http://ihelpedemmaorange.webs.com/

2nd NZ ketamine boosters

Emma had 2 high dose ketamine infusions in Rotorua (14th & 15th) May 2009 over two days. The infusions did not give Emma any pain relief.

1st NZ Ketamine boosters

It's been a while since we posted anything so I'm adding some details of treatments since Philadelphia. Dr Stephan Neff in Rotorua worked magic to set up the facilites for Emma to have 2 consecutive days of ketamine at 200mg over 4 hours (the same dose as in Philadelphia). Treatments began just over 2 weeks after the last Philadelphia treatment as advised by Dr Schwartzman. The infusions were performed on April 22nd and 23rd.

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.

HOME!!

Well came home early yesterday morning and Chana and AB surprised me by meeting me at the airport! Travelled so much better this time around as we were lucky enough to be upgraded to premium economy.
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
xox

Weekend Sight-seeing

We have just had a really good weekend looking around Philly. Yesterday was quite a cruisy day as Emma was very tired. We did manage to go to Chestnut Hill (beautiful area with amazing history & houses) for afternoon tea and spent a couple of hours driving around rubbernecking! Today we went to Philadelphia Zoo, which was the first American Zoo. The weather was really warm, one of the warmest days since being over on the East - no need for hats, scarves or gloves today!

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.

10th treatment day

The last Philadelphia infusion has come to an end (boosters will start in NZ in a couple of weeks time). We are all pleased to be taking a break from it and looking forward to a sleep-in tomorrow. Not much change in pain response for Emma today. Unfortunately Dr Schwartzman could not be there today so we did not get to see him for a final consultation. Quite an emotional morning as Emma said her good-byes to hospital staff and infusion buddies. Nikki and I also had lengthy discussions with the parents of another patient who has had the full ketamine coma treatment in Germany. We really have learnt a lot more about RSD and what the options are by talking with other patients and carers and feel that we are very lucky to have been able to see Dr S whose waiting list is so long.

9th Day of Treatment & Emma's 17th Birthday

Today Emma arrived at the hospital to be greeted with birthday wishes, gifts and cake from the nurses and patients. The birthday cake was make up of heaps of "Tastycakes" which is something unique to Philly. It was very sweet and of course delicious! After the treatment Emma came home and slept for 5 hours and woke up disappointed to have missed so much of the day! There have been some more improvements - today the pain has slightly decreased in her foot. We have ended the day going out for tea at an Irish restaurant and stopped off for ice cream at a trolleycar icecream parlour.

Thank you very much for all your birthday messages and emails.