Re: Therapies - message to all

[Guest guest]

Really pleased we're up for this.

Hi , We live in Leeds in the UK. The NHS waiting lists are often crazy!

I'm like Tammy's daughter, the problem is the system not necessarily the

professionals. My dad had a heart transplant 10 years ago and I watched my mum

push for years. I have a heart condition too and you have to push all the time.

I speak to at least 2 consultant secretaries and the ward a week, either

following up appointments or asking for the consultant to call me back because

something with Jenna has changed.

Tammy, I was lucky like your daughter, I have a pushy mum. She works with stoke

patients and elderly people and helped me with exercises when we came on from

hospital. Nanna's are not forgotten, I'm 100% sure your probably her rock :-)

I've not heard of that chamber therapy, maybe if we find something it could go

on the list?

We've seen a neurologist from day one. Jenna was rush into A and E for

continuous fitting at 7 weeks, our neurologist sorted her out and admitted her

to intensive care then got her onto the neurosciences ward to help her come out

of the seizures on her own. We have a community paediatrician, eye specialist,

epilepsy nurse, visual impairment teacher OT and play therapy all seen every 2-f

weeks. We're due a full team assessment next month so hopefully the NHS physio

and speech starts then. I was told in my we were an urgent case for physio but

the waiting list for urgent kids was 9 months! Thankfully because our neuro is

doing the surgery assessment they brought it forward 4months. As an URGENT caseI

want to take a list of therapies I want to try to the neuro app next week and

the full assessment.

Just getting Jenna ready for bed. Ill have a to see if we can do it.

Katy mummy to Jenna:-)

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> > Hi all

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> > The recent discussions have been really useful. Jenna, my 7 month old

daughter has right sided PMG and is currently having a surgery assessment. She

has severe cortical visual impairement (nothing in the left eye, recently

started to pick up lights in the right), early signs of CP, global development

delay and 15-20 seen seizures a day.

> >

> > We've started occupational and speach therpy and are due to begin speach and

physio in June with the NHS. I'm paying a private physio every 5 weeks and

hydrotherpy with physio for 20 mins every 2 weeks through a charity.

> >

> > I'll get the the reason for my message - We're due at the neurologists (Dr

Ferrie at the LGI) a week on Fri and i'm compiling a list of therapies i've read

about on here or on other sites. As there seem to be alot! Would you all be

interested in creating a document on here listing the therapies we've tried,

what for and how useful it was/is (maybe in one/two sentences).

> >

> > Whhat do yout think????

> >

> > Katy, mummy to Jenna :-)

> >

> >

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