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.

Day 8 Treatment

Emma did not sleep very well last night and was quite uncomfortable going in to the infusion room this morning. She came out happy a few hours later. After a couple of hours rest we headed (at her insistance) to the King of Prussia shopping mall - reportedly the largest on the US east coast. 400 shops......yuk! Made some people happy though!

Day 7

Had my 2nd day of Ketamine for week 2 2day and I'm beginning to get quite used to going to the hospital to get an infusion.
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

Day 6 Treatment

Emma had 200mg of ketamine over 4 hours again today. She came out appearing to have had "a few too many" and was quite comical for an hour or so afterwards. Apparently Pink Floyd on the ipod was what put her in such a happy mood and she insisted that she had been to space
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.

Weekend sight-seeing

We've just had a great weekend sight-seeing. Emma had a very hard day with back pain on Saturday but we were still able to drive out into the Pennsylvania countryside to the Amish "Dutch Country". We were amazed just how many horses and carts we saw. It was a very strange place - the horses and carts were mainly driven by boys or men with no passengers. The carts are old style but with modern rear-view mirrors and indicators. They race along highways battling tour buses and on-coming traffic. It appeared that the women were home sweeping - the most common activity we saw at the farm houses. We drove around the countryside for a couple of hours. I had told my boss that I was tired of technology and that I might stay with the Amish but we didn't really make contact so I'm still not sure about that one. Sunday we had a slow start and then went to the Philadelphia Museum of Art (photos from the steps of the museum are below). Emma's health was much better on Sunday and we all had a great time and felt very cultured. We were surprised at how many of the classics were in the museum; Monet, Renoir, Picasso, van Gogh etc.

5th Day & First Week Complete

Emma has finished the infusion today in high spirits. The infusion was over a longer period today so the patients could be more coherent when the Dr did his rounds. Julian and I had a chance to speak to the Dr after the infusion and he said he was pleased with the progress to date. Emma is less sensitive around her neck and arms and is now able to wriggle her toes on her right foot - her toes were pretty much frozen before. Her hands are still warm and overall she is doing really well. He said that next week is where we will see the most improvements.
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!

4th day of Treatment

Today the ketamine infusion was increased to 200mg over the 4 hours. Emma is feeling good now after a deep 5 hour sleep this afternoon, but towards the end of the infusion she got quite upset - a bit disorientated and also with pain. The barometer pressure dropped last night/this morning and when this happens it causes an increase in pain (unfortunately happens in all RSD patients) and for Emma it causes an increase in her muscle spasms in her right foot and leg. It is part of the infusion protocol that they periodically test her pain levels at various points. Some nurses have simply asked "If I squeezed you foot that'd be a 10 out of 10 right?" while others actually do the squeezing which causes a lot of pain. She has been given some Zanaflex (tizanidine hydrochloride) 4mg morning and night to help with the spasms. Dr S. is trying to find another doctor here that will treat Emma, as an outpatient, and perform a spinal procedure for the muscle spams. Emma has had these spasms for years but nothing has been prescribled to her before. Dr S. has also recommended more nerve blocks for the spasms in NZ. While Emma has the infusion we are not allowed in the room as it is kept quiet and limited light as most patients sleep. During the infusion Dr S comes and sees the patients and discusses their condition with them. We have been told that we will get a chance to have a catch-up with Dr S. tomorrow. Its 8pm now and Emma is feeling good and eating well.

Emma's View

well had my third treatment of ketamine 2day, feel much better than i did the day before, as i was given medication to stop me being sick. But still can't wait till it's over. I'm looking forward until friday so that i can take the iv out of my arm... it's getting really itchy!
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,
Emma xxoxx

Photos at the clinic

In the Infusion Room before the treatment started. That's not a bad smile after a 5Am start! There are 11 of these chairs in the infusion room and there have been 6-8 other patients having the same treatment at the same time.

5AM starts are catching up! This extra sleep came in handy when Luke and I had an 8km walk to Chestnut Hill this afternoon.

Day 3 Treatment

Another 5AM start to get Emma to the infusion room by 7AM. Today she received the same dose as yesterday (150mg of ketamine over 4 hours). She is taking 1mg of lorazepam morning and night to avoid the bad dreams that ketamine would otherwise cause. She calls these her "Harry Potter pills" as Harry was given something similar after a clash with "you know who". She continues to have midazolam at the beginning and the middle of the infusion to help with nausea and today she was also given something else to stop her being sick. Tomorrow the dose of ketamine will be taken to 200mg over 4 hours and she will continue on this for the rest of the week and all of next week. After the infusion Emma comes out tipsy and quite wobbly. The unsteadiness results in me carrying her up the stairs when we get back to our house. She has something to eat and then falls asleep. She says that she is sleeping the best she has in years. Dr Scwhartzman has said that no-one with RSD sleeps well. After 3-4 hours sleep she wakes and is very hungry again - has a meal and then, of course, a big plate of icecream.
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.

Day 2

Day 2 and Emma's ketamine infusion was increased from 80mg to 150mg over the 4 hours. They had originally planned for day 2 to be at 100mg but she coped really well with the previous day. Tomorrow's dosage is likely to be at 150mg. Emma was sick a few times at the end, but overall is coping really well with the treatment. After Day 1 we could see some signs of the treatment starting to work for Emma. One thing is her hands which are normally cold and clammy, are now dry and warmer.

Our Phili Neighbourhood

Thanks to all of our family & friends in New Zealand for the emails and feedback on the blog. Emma loves hearing from you all. We all really appreciate it.
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

Upstairs - Our place



The neighbourhood is filled with beautiful old houses

Co-op store across the road provides the food and has a great community atmosphere

1st Day of Treatment

The treatment went well today. We arrived at the hospital at 7am and Emma had an IV line put in by 7.30am. She was taken to the infusion room and given a lazy-boy chair to sit in. She had with her a pillow and blanket, and mp3 player, so she was quite comfortable. She was first given Midazolam at the beginning of the infusion and again half way through, this is to combat potential side effects of the ketamine. Emma tolerated the 4 hour ketamine infusion well and tomorrow they will be scaling up the dose quite a bit. It's now 3 hours after the treatment and she is sleeping back at the house. The staff have been really good to Emma and making a fuss of her. Emma is Dr Schwartzman's first NZ patient. I have just read that Dr Schwartzman has been judged America's top Pain Physician and one of the top 3 Neurolgists in 2007-2008 (as judged by 50,000 expert physicians), so we think she is in good hands! Dr S. has said to Emma (and us) quite a few times that she is "one tough kid".

Emma's Photos

The White House

World War II Memorial

Mid-air squirrel



The squirrel Luke and I fed

Sea Turtle bones at the National Museum of Natural History (BEST PART... Fred's great granddad)

Update

Well... been in America for over a week and missing home lots!
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

More photos

Newport Beach, Orange County, California

Philadelphia. Emma's appoinment was in the building behind.

1st Visit with Dr Schwartzman

We arrived in Philadephia yesterday and the weather is quite similar to NZ only with a brisk wind but not too cold. Today Emma had her appointment with Dr Schwartzman at Drexel University Medical Hospital. It was reasurring to meet with a Doctor that has had so much experience and knowledge working with patients that have RSD. He explained many things to us and gave Emma a thorough examination and said she has full-blown/full body RSD, not just her foot/leg where she exeriences the most pain. Through this exam he pointed out to us symptons that Emma has that had not previously been connected to this disease. It was really reassuring and gave us lots of hope. Emma begins treatment on Monday and Dr S. and his team have a special infusion room where they treat RSD patients daily with the treatment Emma is scheduled for. They showed us the room where several patients were undergoing the treatment. He explained that 50% of people that have the coma treatment (that Emma won't have - only available in Germany and Mexico) are pain free but that the outpatient infusion that Emma will have has more varied results. He said that there will be improvement but it is unknown to what extent.

Friday - Double Black

Yes - two Friday the 13ths in a row as we crossed the date line. We'll call it lucky though. The only issue we had was that the rental car company were out of both GPS's and maps. We travelled from LAX to Anaheim using only an A4 size photo copy map of LA. We found ourselves on the pacific coast highway which surely was not the fastest route but quite interesting and we eventually found our hotel about 4 hours later after a battle with a strange numbering system on our street which is 10 miles long. I spent the evening downloading the USA western region map for our own GPS and wishing I had done that before we left. The car is a dodge charger which impressed Luke - we needed a full size car to fit the wheelchair in. Not much room left for luggage! Yesterday we had a great day at Disneyland and had fine navigation there by none other than Darth Vader (via our GPS). Today's travelling was navigated by Hannibal Lecter whcih made for a few interesting moments on the freeway. We seem to be running on LA time in the mornings and NZ time in the evenings which simply adds a few hours extra in the day. So as it's about midnight and we've walked the mean streets of LA all day (and survived!) we'll call it a night. Highlights of the day - Meal at west hollywood. Lowlight of the day - parking in LA's fashion district - was expected to surrender my keys so that attendants could juggle the cars all day as there was not enough room. Quite another world in that part of town - the rest of downtown LA was practically deserted as it was Sunday.

First few days in LA

The flight over was good, and most of us managed to get a few hours sleep. Emma travelled reasonably well, much better than we expected. We are now up to date with the movies. Saturday was a full-on 12 hour day at Disneyland and it certainly lived up to its reputation. There were thousands there and huge queues at the rides, with the most popular being over an hour. Emma was given special treatment and was able to enter through the exit lines and go straight to the front - there's got to be some perks to being in a wheelchair!

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.

LA Photos

Downtown LA - Pershing Square - where are all the people ? (Sunday)

Pershing square - LA

Disneyland

Luke becomes jedi

Main street USA - Disneyland

City Hall - LA

Final tests complete and ready to go

Quite a few tests were required before heading to Philadelphia. A full series of blood tests, cardiology tests and a psychiatric clearance were required. The test that proved most difficult to have was a Tilt Table Test. All of the hospitals in our local area had long waiting lists and could not do the tests for several months - which woudl be too late! Thanks to Christchurch hospital for fitting Emma in at short notice. Our only backup option for the test was to have it in Philadelphia at a cost of $1000 US so flying to Christchurch was a great saving! Emma was picked up in Christchurch by her Grandmother, had the test and then spent a very pleasant weekend with family in the south. Emma fainted on the Tilt Table after 10 minutes or so. Her blood pressure returned to normal quite quickly and so it was a good result for clearance for the ketamine treatment. Unfortunately the Doc grabbed her RSD foot to help her gain her balance after fainting. :-( :-( I think Emma needs to wear a sign when seeking medical treatment "Don't touch the foot!".

So tomorrow we fly out Auckland to Los Angeles.

My Overview

My name is Emma and I have Reflex Sympathetic Dystrophy (RSD), commonly referred to as Complex Regional Pain Syndrome (CRPS). I have suffered from this pain condition for six years, since the age of 10 and it has completely changed my life. I first got RSD from a minor sprain injury, and was diagnosed with RSD months later. My life became a battle in which I had to fight the pain to continue my life. I had to give up all sports which I had previously loved and it took me a long time to accept that I wouldn’t be able to run again like I once had with so much joy. I have tried all the typical treatments for RSD including sympathetic nerve blocks, acupuncture, physiotherapy, tens machine, pain medication… but nothing worked and the pain has continued to get worse. A good day is a day in which I can cope with the pain. The pain is always there, but I am able to smile and laugh and feel the joys of life. On a bad day the pain is all I am able to see. A bad day is a day where I have failed to lock the pain away and once again it comes to control my life. It is hard for me to describe the pain as it varies greatly and there are often so many different types of pain, often at once. The most continual pain is the burning sensation. It is as though my foot has been placed in a fire, and I can’t pull it away. It continues to burn.

Photos

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 free-loading behind Dad. (Emma has not been able to pedal a bike since 2002)

Emma (bass) on stage with Montana Late


Emma (right) and friends prepare for school ball

Emma's beloved turtle Fred

Emma's plans for treatment in Philadelphia

I'm setting up this blog as a space where we can record Emma's journey to Philadelphia so that her family and friends in New Zealand can remain informed of her progress. This blog is also open to the public because over the years we have been given hope and gained a lot of knowledge by following the treatment options that other sufferers have undertaken. In the past year we have closely followed the progress of Alessa's treatment with ketamine and thank her and her parents for sharing their story.

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.