Lewis update

We had a hospital appointment today with Lewis' neurologist. It was a really good meeting and we felt alot was achieved. After feeling so low about the Lyme Disease result, it is great to feel positive about the future for Lew.

First of all, we have confirmed that he will not be having the surgery on his legs - we had originally believed this was surgery to re-align his hip, but we then discovered it would also involve cutting Lewis adductor and abductor (not sure if those are the correct names!) muscles in his thighs - and muscles dont grow back - and given that we dont know what Lewis condition and therefore prognosis is, we cannot risk having surgery like this as one day he may be cured and we want him to be able to walk again.

Secondly, Lewis will be having nerve conduction tests. These have been put off because Lewis used to have reflex anoxic seizures (at extreme fear/upset he would hold his breath reflexively - ie. he was not in control - until he turned blue and passed out). Having the nerve conduction tests would have triggered the RAS and so therefore would have not given any clear results. Now that Lewis has grown out of his RAS, we feel it is the time to have the tests so these will be carried out in the next 2-3 months. The tests involve sending small electric shocks through Lewis' nerves to test the time it takes to get a response - if the nerves are damaged, the response will be slow or non-existent.

In addition, we are hoping to get a meeting soon with a doctor who is involved in adult deep brain stimulation. This treatment has been carried out with huge success on a test group of adults with neurological conditions. A doctor in France is pioneering this treatment on children and we are hoping to be able to meet with this doctor in the near future. Until then, Lewis will be seen by the adult doctor in Sheffield as there is the hope that this treatment will become available for children in the UK very soon.

We also found out today that Sheffield Childrens Hospital is getting a new super brain scanning machine in April and Lewis on the waiting list for one of these specialist scans. It is like an MRI but much more detailed and may pick up something that the regular MRI did not.

So we have alot going on over the next few months.

Thank you to everybody for your very kind messages about the Lyme Disease test results. I did receive text messages from a couple of people but I dont have the numbers stored in my phone so was not aware who they were from - so thank you to those who texted too!