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Tuesday, February 20, 2007

Folinic Acid

Lewis' neurologist has been in touch. He has heard from the metabolist Lewis saw in December (Dr Sharrard at Sheffield) and he has suggested we try Lewis on a vitamin called Folinic Acid. Apparently in some children with neurological conditions this has had a positive effect (is it effect or affect, I never know!). So we're waiting for the prescription to come in the post so we can go and get some from the chemist. If you look up folinic acid on the internet, its actually used in conjunction with chemotherapy treatment (http://en.wikipedia.org/wiki/Folinic_acid) - but I guess as with other new uses for drugs, it had an interesting side effect on children with neurological conditons. Amazingly this was also the case, in some people, with dopamine. Dopamine was prescribed to people suffering from Parkinsons Disease ('the shaking palsy') to help to control their involuntary movements. It was recently discovered that in a small amount of people who were thought to have Parkinsons Disease symptoms, they were in fact suffering from dystonia (http://www.dystonia.org.uk/) and by taking the dopa, they were temporarily cured! The effect only lasts as long as the dopa is taken, but how amazing to be in a wheelchair for years and then to have dopa and to be able to walk!! This dystonia is called 'dopa responsive dystonia' and early on it was thought that Lewis might have this, so he went on a dopa trial. Sadly though, this was not the case. But its amazing isnt it? How a drug used for one condition for a long time can suddenly be discovered to cause massive improvement in a completely different condition. A bit like guinea pigs and aspirin I guess (I think thats the story - if guinea pigs had been tested with aspirin, humans would never have used it due to the stomach hemorrhaging - something like that anyway!!! I dont know if I mentioned before, but Laura's nan passed away this weekend. I am certain Laura was a great comfort to her nan in her final weeks. Let's hope that Laura's nan can be remembered for all her happy times, and that this will bring comfort to Laura and her family during this difficult and sad time for them. Marie has arrived from Bluebell Wood (phew!) so I have been able to get a shower. So disorganised this morning because of being so tired. Feel a bit human now! Telephoned hospital to see how Sahn is, but the doctors were in with her so I will have to ring later. Marie helped to get Lewis up and in the bath. Unfortunately (for all of us!) he had an accident in the bath, and bless Marie, she cleaned it all up! She is so good! I was so embarrassed as the lid on my toilet seat broke the other day (I sat on it and it cracked under me!) and because its just in my en suite, I've not been bothered about getting a new one straight away, so I was kind of mortified to have someone see it like that! And the bath was dirty (I hadnt cleaned it after my bath the night before) so Marie cleaned that too before running Lew's bath ... it is so hard to accept help and support, but I guess one has to just give in and accept! We went for a lovely walk around the lake and fed the ducks and the mad seagulls! And saw two alsations swimming in the lake and playing ball with their owners, it was so cool! Well I spoke to Jin Qui and I went into see her and Sahn. She is doing much much better than yesterday, thank goodness! Jin Qui's 2 friends were visiting also. One of them has had formal training in Chinese massage and so she was showin Jin Qui and I how to do this massage (using Chinese pressure points) on Sahn and Lewis. She demonstrated on us first - ooooh it was bliss, just pressing on these small points on the head and chest, it was awesome! Unfortunately though, we missed Musical Minis as the doctors came in to see Sahn and so I couldnt leave until they had finished. I brought Jane home with me and she enjoyed playing with George and Samuel, while Lewis watched and found it very amusing, while I made pancakes! I seem to have become an expert! Last year, I was so useless, Ros and Jane had to take over, even bringing their own frying pans! But this year I was calm itself and my pancakes were absolutely perfect! Must be something to do with the fabulous frying pan that Pat and Paul bought us for a wedding gift! Lots of pancakes were eaten then there was lots of more playing and running around like looneys, which Lewis absolutely loves to watch! Just after 5pm, James came home from work so I took Jane to the hospital to see her mum and then took her home (her dad is at work so Jin Qui's friend is staying to take care of Jane). On the way we popped into the shop to buy some biscuits (James had given Jane some biscuits to take home, but we had left them at the hospital with Jin Qui). Well while we were in the shop, a shop lifter was caught! It was quite scary! Now we are back home and Lewis is in bed, sooooo tired! He went straight to sleep before we even turned out the light! Sadly (for us) George is going home tomorrow. We will miss him sooooo much!!

1 comment:

Fundraising lawsey said...

Morning :)

Happy pancake day :)

Yea..it is amazing how different meds can be used to treat and sometimes cure different things..


..i used to work at lloyds pharamcy on saturdays, and often dealt with the prescriptions and sometimes with meds, and learnt a fair bit...and yea, as you say, it is quite amazing really :)

hopefully the folinic acid will help lew *fingers crossed* :)

Hope sahn is ok :)

take care

lawse :) x

Take a look at other videos of Lewis at YouTube

The Lewis Jeynes Fund

The Lewis Jeynes Fund was established to provide care and support to Lewis Jeynes and the success of the Fund has meant that we have also been able to purchase specialist equipment for other children with undiagnosed neurologically degenerative conditions in Doncaster and the UK.

Lewis and his friends around the UK all suffer from acute and undiagnosed life limiting or terminal conditions and very often specialist equipment is difficult to afford due to the changed circumstances at home. This is where the Fund can provide vital assistance to those in need. All of the proceeds of the Fund go straight towards helping Lewis, and other children and families like him and us.

Contributions should be sent to The Lewis Jeynes Fund, 15 Kentmere Drive, Doncaster, DN4 5FL or by BACS to Nat West Bank, “The Lewis Jeynes Fund” Account No. 35662565 Sort Code 60 06 39. You can also go into your local Nat West Bank and pay into the Fund over the counter.

22nd October 2005

22nd October 2005
Lewis checking our supermarket receipt!

April 2006

April 2006
Colchester Zoo, just before Lew stopped walking

August 2006

August 2006
Lovely ice cream yummmm!

September 2006

September 2006
Ward 30 - just after Lews first major seizure

October 2006

October 2006
Doncaster childrens assessment unit - 'm on the phone!

October 2006

October 2006
In DRI childrens assessment unit blowing up rubber gloves!

30th November 2006

30th November 2006
Ward 31 - Blowing kisses to Daddy! Mwah!

30 November 2006

30 November 2006
Ward 31 - Playing cars!

1st December 2006

1st December 2006
Frankie & Benny's - just discovering cant eat very well

7th December 2006

7th December 2006
My arm doesnt work but my tongue still does!

7th December 2006

7th December 2006
Playing with Evie and mummy on the sofa

7th December 2006

7th December 2006
Lew in the bath with Evie providing entertainment!

7th December 2006

7th December 2006
At Homestart Christmas Party, waiting for Father Christmas with Aunty Nicola and Evie!

December 2006

December 2006
Playing with Miss Jodie at Building Blocks Nursery

i love you much (most beautiful darling) by e.e.cummings

i love you much (most beautiful darling), more than anyone on the earth and i like you better than everything in the sky -sunlight and singing welcome your coming although winter may be everywhere with such a silence and such a darkness, no one can quite begin to guess (except my life) the true time of year - and if what calls itself a world should have the luck to hear such singing (or glimpse such sunlight as will leap higher than high through gayer than gayest someone's heart at your each nearness) everyone certainly would (my most beautiful darling) believe in nothing but love

Lewis' cousin Millie

Lewis' cousin Millie
January 2007

Lewis and his cousin Evie

Lewis and his cousin Evie
February 2007

Lew and his cousin Anna

Lew and his cousin Anna
February 2007

12th December 2006

12th December 2006
DRI Christmas Party - meeting Father Christmas!

30th December 2006

30th December 2006
Lew in Ward 31, not very well

5th January 2007

5th January 2007
Ward 31 - playing with my lovely balloons!