Re: Advice re neurologists

[Guest guest]

Dear Margaret

 

We saw Dr Rose and Dr Rodney scott at GOSH... Dr Rose was the one who did the Keto research and she works with the neuros in Bavaria Germany.. Dr was at school with me in Zimbabwe... really nice guy....

 

However.. if you are hoping for any of them to explain Henry's seizures and then find a non AED route.. I think it is highly unlikely... for us they offered extensive brain surgery... very high risk.. and it was only offered because Tatijana is so high functioning..

 

We continue to see huge gains with Tatijana and TST.. even though as the seasons have been changing, we have had a bumpy few days.... called .. she recommended modified exercises... and she is seizure free again.

 

We did all the sleep deprived EEGs, and did 5 days of telemetry.at Gosh a few years ago... and eventually we got a result... she has seizures.. they end up in her hippocampus... and they do not know why.....so rather a waste of time.

 

Henry is at a critical age where myelination of the brain connections begins... it is a rocky time,, made worse if he is like most ASD kids and cannot get enough oxygen to his brain.... AEDs restrict oxygen uptake in the brain.. which is why so many kids on multiple AEDs or high dose AEDs are like zombies... which is why we are so delighted with TST.. much better colour to face, no puffiness in limbs, no mottled skin, no bloated stomach, no tiredness, less black and white thinking... and a more relaxed young lady...too

 

 

Best wishes

 

 

 

Tracey

PS if you can get to London... is a few miles from Gatwick...Gatwick express?

 

 

On Tue, Mar 16, 2010 at 8:36 AM, Margaret <m.collins9@...> wrote:

 

Sorry , I already asked about this recently but I can't find the posts as the message search facility still doesn't work for any messages after March 2009.Henry's dad and I both agree (!) that there's spomething wrong and he needs investigating. It will be months before Henry's ready for the sleep study at Papworth, because he has to learn to tolerate multiple sensors, tape, elastic belts and trailing wire all over his body first amd to keep them on for asnout 10 hours, and this is taking a long time.

I'm not keen on Addenbrooke's and I remember a couple of neuros were recommended to us (one by Darla?). I remember someone at the C & W and someone at Gt. Ormond St were mentioned. Please would people kindly remind me? - and if there are any other great neuros I should love to know who they are. It would be nice to speak on the phone to people with good experiences. I want Henry to be properly investigated so that if he is having seizures of some kind we find the underlying reason, perhaps metabolic, and avoid his simply being put on AEDs.

Thanks, MargaretPS we are in Cambridge. London hospitals are easy for us to get to.

[Guest guest]

Hi Margaret,

We have seen Dr Kinali.  I would recommend her but I have to say that she is the only neuro that we have seen so I don't have any comparison.  She is at C & W and her waiting list is long but I would imagine that you would find that is true for most paed neuros. 

 

Her speciality is paediatric neurodegenerative diseases and she has worked at GOSH so has knowledge of the staff there and has referred us to a specific GOSH consultant for further testing.  She seemed to take a no nonsense approach which is good and has been pro-active and thorough. 

 

Our only complaint is that it has been two weeks since the last test and we still have not received the written report of the test results.  We have not, however, follwed this up via phone yet. 

 

it's been another day of hospitals for us, St 's in Westminster and with the Prince Albert bridge closed it was a NIGHTMARE.  We should have taken the train.

 

Anyway, all the best,

 

There was someone else who recommended a neuro, perhaps they will remind us who it was.

 

Regards,

Darla

On 16 March 2010 08:36, Margaret <m.collins9@...> wrote:

 

Sorry , I already asked about this recently but I can't find the posts as the message search facility still doesn't work for any messages after March 2009.Henry's dad and I both agree (!) that there's spomething wrong and he needs investigating. It will be months before Henry's ready for the sleep study at Papworth, because he has to learn to tolerate multiple sensors, tape, elastic belts and trailing wire all over his body first amd to keep them on for asnout 10 hours, and this is taking a long time.

I'm not keen on Addenbrooke's and I remember a couple of neuros were recommended to us (one by Darla?). I remember someone at the C & W and someone at Gt. Ormond St were mentioned. Please would people kindly remind me? - and if there are any other great neuros I should love to know who they are. It would be nice to speak on the phone to people with good experiences. I want Henry to be properly investigated so that if he is having seizures of some kind we find the underlying reason, perhaps metabolic, and avoid his simply being put on AEDs.

Thanks, MargaretPS we are in Cambridge. London hospitals are easy for us to get to.

[Guest guest]

Thanks Tracey,

I have shown your message to Henry's dad and have asked him to drive us. Fingers

crossed.

Margaret

>

> >

> >

> > Sorry , I already asked about this recently but I can't find the posts as

> > the message search facility still doesn't work for any messages after March

> > 2009.

> >

> > Henry's dad and I both agree (!) that there's spomething wrong and he needs

> > investigating. It will be months before Henry's ready for the sleep study at

> > Papworth, because he has to learn to tolerate multiple sensors, tape,

> > elastic belts and trailing wire all over his body first amd to keep them on

> > for asnout 10 hours, and this is taking a long time.

> >

> > I'm not keen on Addenbrooke's and I remember a couple of neuros were

> > recommended to us (one by Darla?). I remember someone at the C & W and someone

> > at Gt. Ormond St were mentioned. Please would people kindly remind me? - and

> > if there are any other great neuros I should love to know who they are. It

> > would be nice to speak on the phone to people with good experiences. I want

> > Henry to be properly investigated so that if he is having seizures of some

> > kind we find the underlying reason, perhaps metabolic, and avoid his simply

> > being put on AEDs.

> >

> > Thanks,

> > Margaret

> >

> > PS we are in Cambridge. London hospitals are easy for us to get to.

> >

> >

> >

>