Lewis Jeynes's Fan Box

Lewis Jeynes on Facebook

Thursday, September 24, 2009

Update

Today we saw Lewis' neurologist for an update.

There is a meeting of neurologists tonight at which they will discuss Lewis's MRI scans and then let us know the results. The doctors are still trying to decide if the changes in Lewis's cerebellum are an infection which has been and gone or one that is still progressing. The neurologist mentioned that they would have expected to have seen degeneration in his brain because of his 'degenerative neurological condition' (which we found very upsetting as we've never considered this) but we still hope this is a post infection stage and that the changes/damage will stop or has stopped.

A further EEG, new nerve conduction tests and a gag reflex review are being arranged. Its upsetting to think that Doctor's expect Lewis to degenerate further and are not surprised when he does, we still hope we can find something to halt that process and start the road to recovery. Nothing will stop us looking for the answers, Lewis is too brave and gorgeous and deserves to find the cure he needs.

It was also very upsetting for the doctor to say they would do a further MRI in 2 years. All I can see is Lewis' life stretching ahead of him like this, with no hope and no cure. To us 2 years is a lifetime - anything could happen in that time and we've been so hopeful with Lewis' response to antibiotics with his improved head control and cognitive abilities and now with the changes to his MRI we feel like we are taking a huge step back to square one where we know nothing and anything could happen - so it was a very tearful appointment.
We love you Lewis x x x

2 comments:

Joanne said...

Oh Sam my heart goes out to you but do not despair Lewis has had some improvement with the antibiotics and with the private treatment you can and must move forward. With or without NHS doctors. Sadly for now NHS doctors are not opening their minds to what is staring them in the face.

I am sure you will find a way. There is so much to learn about Lyme Disease it's affects and it's treatments and you are in good hands with your private doctor.

http://www.telegraph.co.uk/news/uknews/2403925/Schoolgirl-fears-she-could-be-paralysed-by-tick-bite.html
Danielle Fisher in the above newspaper article had serious brain/neuro problems and last week her mum posted that she is back at school part time and able to go out with her friends. Danielle featured in the BADA DVD I sent to you. It took Danielle two years of antibiotics to get well.

Be strong and find out as much as you can about lyme to help find your way through this minefield. Neurologists are used to standing back and watching what happens but we do not have to we have a way forward with antibiotics with Lyme.
Hugs Joanne

Anonymous said...

There are so many advances taking place in medicine these days but I honestly think neurologists are often still very much in the dark ages. You've seen for yourself how much Lewis is progressing just as I've seen for myself how much I progressed on antibiotics. Does it make a jot of diffference to NHS Drs? If they had their way I'm sure they'd try and stop me from taking antibiotics- just as well I decided to go to a private LLMD.

I'm really excited to see that Lewis can hold up his head again and look forward to seeing him reach many more new milestones in the future. Your post gives me the impression that if the Drs are cynical about the antibiotics, they'll try to scare you about the possible side effects and stuff like that to try and get Lewis off them (I wouldn't put it past them!). As long as Lewis takes some supporting meds to prevent him from developing other illnesses that really is nothing to worry about.

Here's hoping that two years from now you'll be making a very triumphant trip for his next MRI with the opportunity to say "I told you so";)

H

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!