Posts filed under 'cp'
Daisy’s second trip to Hangzhou passed easily enough with only a few headaches as side affects from the lumbar punctures. The internet connection was very slow and intermittent and there wasn’t really much to report in way of any changes , hence no information.
I will update this blog as soon as I recognise that there is anything worth writing about in respect of the stem cell treatment that Daisy received.
I seem to be able to pick up messages now so if anyone would like any information on Daisy’s treatment please ask.
Nathalie
March 16th, 2009
I appear to have 4 comments that people have posted but I am unable to accress for some reason. If anyone would like to contact me, please do via email on, nathalie26@hotmail.co.uk.
September 24th, 2008
Daisy returned from Budapest very happy. She enjoyed her time out there and was very good good during her sessions at the Peto Centre. She definately made a lasting impression and her Conductor was quite upset to see Daisy leave.
Daisy has since settled back into school and continues to eat very well and her weight is increasing slowly. Her legs have fattened up nicely and since the Peto school, her thighs have gained good tone.
Daisy has been sitting up from laying on the floor for the past few months with a little help from an adult holding her legs down. For the past few days she has manged to sit up with no help at all which she (and the rest of us) are very pleased about.
Daisy had a review at the locomotor clin at Great Ormond Street Hospital and the staff were very pleased with her progress. The have seen the changes in her especially due to her now eating well. She has put on weight (eats fruit which she would never do), looks healthy, sits up better and straighter, though her heads still hangs at times. Her hands are more open and I think that she is definately seeing better. GOSH are arranging a full sight test to see whterh her optic nerves have improved as that seems to be a common improvement of the stem cell treatment.
We are looking to book Daisy for another round of treatments for just after Christmas time. This time round we will also culture some of Daisy’s own stem cells from her Bone Marrow.
I will keep updating this blog as soon as there is more to say.
Nathalie
September 22nd, 2008
Daisy is now in Budapest and has just started her Conductive Education at the summer school this morning.
She didn’t look like she wanted to be there and was moaning a bit to her Dad but when he left the room she decided to get on with things and when he has checked on her through the windows, she has been playing and laughing and looking like she is being really cheeky. She looks as if she is trying hard with her exercises/tasks this morning and has been chatting away to some little boy. God knows what she is trying to say but Daisy’s Dad says that it is the most he has seen her attempting to communicate via talking.
Daisy does talk at home and most of her sentences are not well understood. She repeats herself and it sounds to all of the family like she is saying the same thing so I would say it is intelligible. Unfortunately a lot of the time she gets very frustrated at our lack of understanding and then gives up.
At least she appears to be enjoying herself at the Peto. I will post more soon.
Nathalie
July 28th, 2008
It has been almost two months since Daisi finished her treatment in Hang Zhou and I believe we are seeing some small changes in her. I believe her eyesight is improving. She seems more aware in her surroundings and keeps trying to grab at things in a way she never did before. Apart from her trying to use her hands more I cannot see much in the way of physical improvements yet.
Daisy has more concentration and tolerates my help in activities better than she ever has.
On the downside, Daisy’s behaviour has gone downhill and she is getting even more willful!
Apparantly any improvements will start to show at 2-4 months so Daisy will be attending a Conductive Education group at the Peto centre in Budapest for their three week summer school at the end of July. We are all hoping that a combination of the stem cells and some good physical input will produce some good results. As the stemcells may fix the brain, Daisy will still have to learn how to manage more independantly – we are under no illusions that the stemcells are a miracle cure.
If there are more changes then I will post them otherwise I will wait until Daisy returns from Budapest in August to update this website.
Nathalie
June 19th, 2008
Daisy finished her treatment in China at the end of April and went to Dubai for a ten day holiday with her Dad to recuperate. After spending so much time in the hospital I think it was well needed. Daisy has been back for a couple of weeks now (with a healthy glow) and is settling back in at school.
It is hard to say whether or not I can see anychanges in her yet. She does seem to be taking more interest in things around her that she never really used to be interest in. There have a few incidences when I think oh yeah the stem cells must be working but then they may just be one-offs. I think I will wait until I commit myself to saying that yes it is definately working. It may even be that her eyesight is improving as I have heard that a lot of people see improvements in that area first of all.
It is still early days yet so I am still hopefull. I will write again soon.
Nathalie
May 19th, 2008
Hi Everyone,
Daisy had a weekend away from the hospital, On Friday we took her sightseeing and on a boat at west Lake and then Saturday we stayed in a hotel local to the hospital. Being stuck in the hospital for all that time seemed to be getting to her but she’s back to giggling and being cheeky again, thank god.
Today she had stemcells by IV which is a lot better as she does not have to lay down for the six hours after, there was a few tears to begin with but she calmed down once her favourite hard house track was played to her. Laura is just getting her ready for bed, after a day of physio, Electric wave therapy and acupuncture she is so knackered that she is usually fast asleep before 19.30.
Tommorrow it’s just the normal routine of physio etc but wednesday she will be having her Lumber Puncture so we will keep you posted. Hope we are as lucky as last week when she was happy to lay still for the six hours.
April 14th, 2008
Hi everyone,
This is Daisy’s dad taking over for the next three weeks, we arrived at the weekend and I noticed that Daisy balance and posture had approved slightly. This could be where I have’nt seen her for sometime but fingers crossed the stemcell Treatment is beginning to work.
Daisy had her fourth Lumber Puncture yesturday and although you might expect that keeping a seven year old down for six hours might prove difficult, she shocked us all by laying down for the full six hours without a sound or movement. However today’s therapys never went to well and she seemed to lose patiences but this might be due to Daisy having a late night yesturday.
Daisy is still having Physio, Acupuncture and Electric Wave therapy daily so far there seems no signficant approvement although there are children here whos parents have noticed improvements after their first stemcell Injections , however its a waiting process so our hopes are high,we are taking Daisy on a conductive therapy programme in the summer so hopefully this will help things along.
Daisy is off to West Lake at the weekend for a bit of R & R, she has her IV on Monday so we will update you all then.
P.s I will forward your messages on to Nathalie as she can advise you on most of your questions.
April 10th, 2008
Hi everyone
Thanks for the comments. Still no improvement noticed but the Doctors have said that any improvement usually takes around 6mths to be fully noticable in people with Cerebral Palsy. So time will tell.
Daisy had her 3rd stem cell treatment yesterday – a lumber puncture. All the Drs and nurses think she is great as she listens to her music and does as they ask in the treatment room (we are not allowed in with her). IT’s a shame she’s not always like that with me!
Everything went ok apart from Daisy getting asplitting headache but some medicine soon fixed that.
We were told this afternoon that our schedule has changed and we no longer have a free day tomorrow(Friday) -surprise surprise. We will not be able to go into Hangzhou with Daisy so we will go back to the Italian restaurant that we went to the other night.
Matthew will arrive here Saturday afternoon so Dean and I will stay in HAngzhou before returning Monday night. Matthew will be updating the blog from then on.
Good night. Hope everything is ok back home. See you soon.
Nathaliex
April 3rd, 2008
Hi everyone,
Thanks for your comments. We are all fine. Feeling a little institutionalised but otherwise just getting on with our daily routine. We still hvaen’t managed to get further than the local high street (if you can call it that!). We were hoping to go out on Sunday our second day off as Daisy had then recovered from her lumber puncture. But alas, the heavens opened and it poured all day long and was also quite chilly. Another day in then. I feel like i am becoming a hermit. Today Daisy is having her second lumber puncture treatment so it is a lovely morning all bright sunshine and really warm. Again we will not be able to go out. We do have another day off on Friday this week so we may just get to go out together before Matthew arrives and takes over. Daisy is getting rather bored and I don’t blame her. We are having a few therapies but some of them are quite passive and we have to wait around in between. As for any improvements I can’t really say that I have noticed anything yet but it is still early days. I am hoping that after not seeing her for a while there will be some and they will be quite apparent.
Take care
Nathalie x
April 2nd, 2008
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