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!!