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Friday, September 11, 2009

A very worthy cause - please sponsor!

As you all will know, Lewis has (on loan) a MyTobii eye computer which he is able to play games on and one day (we hope!) will one day be able to use to communicate with! He uses one at school, so having one at home to use as well is absolutely brilliant for Lew and for us! Well the charity that has let us borrow the computer is called Special Effect and Matt Hampson is doing some fundraising for them so that they continue the amazing work they are doing so please please visit this website and sponsor Matt! http://www.walk4matt.org/ It really is a great cause!
With regard to Lewis - he is doing so well on his antibiotic treatment and we have been so very very positive about him actually making a recovery! However, we have been told that after his recent MRI scan there are changes to his brain. We are seeing Lewis' neurologist on 24th September to discuss these results in detail, but for us its a very harrowing time as we feel like we are back at square one - we could lose Lewis. We have always focussed on the fact that he has no damage or changes to his brain and that as long as this is the case, there is always the possibility of a full recovery at some point in the future. Now we are, basically, scared that Lew could begin to deteriorate again. We will, of course, let you know the results of our meeting with Lewis' neurologist later this month. Let us hope and pray that it will be something we do not have to worry about. We love you Lewis, so much x x x

1 comment:

Joanne said...

Samantha and James
Clearly a very worrying time for you all and I wish you well with your consultation.

I know James is well on top of research on Lyme and that you have some excellent Lyme Literate doctors advising you but just in case you have missed anything I will list a few things that come to mind.

Steven Phillips presentation to IDSA review on seronegativity and persistent infection after repeated courses of antibiotics.
Lorraine Johnson's presentation of brain scans before and after treatment.
Daniel Cameron's and Alison De Longe critique of Klempner study.
Ken Lieger's presentation and the Chairwoman's comments that there is only one species in USA as opposed to at least three others in Europe. The inference being that European studies on different species were not relevant to their Guidelines and so the converse must follow.
All these are available at
http://www.idsociety.org/Content.aspx?id=15026

Makers of test kits used by NHS say that it must be a clinical diagnosis.
http://www.trinitybiotech.com/Products/Technology/?prodid=950

There was an interesting article written by Dr David Owen which talks about lack of inflamatory markers.
http://www.lymediseaseaction.org.uk/conf2005/owen_fri.htm

I suspect that ID Consultant dismisses current infection based on lack of inflamatory markers but Borrelia a spyrochetal bacteria does not present in the same way as most other bacterial infections.

I know you will already have read ILADS and Burrascano guidelines but has your Neurologist?

You have already described how well your Neurologist can smooth talk you into being calm but on this occassion go in well armed with information and remember medicine is always evolving.

So far Lewis has not had any treatment that has stopped the progression of this illness over three years.

You now have the most powerful sign of all that of Lewis' improvements in head control since being on antibiotics. The consultant should be throwing out all his old rule books and paying attention to Lewis' response.

Stick to your convictions and I wish you well.

Much of the information and more from my blog I have taken to my GP who has treated me following ILADS and I have recovered.

GP takes a very keen interest not out of politeness but because she has seen the benefits and can be open minded to the science.

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!