Re: Isis meets Dr Blecher!

[Guest guest]

I am sorry, learning new tech words. What is EDS and Sod? and Jennicah

[Guest guest]

Hi Faye,

sorry it's very late, but I just have to ask one quick question

before I hit the pillow.... I had an email today from Dr Blecher, as

we are trying to make an appointment to see him privately. Just need

to ask, as you were seeing him at Kings: are you seeing him on the

NHS and most importantly: Does the NHS cover the cost of treatment

and Helmet?

Hope you don't think I'm very blunt, but money is tight and even

though I want to get treatment for my son quickly I have to think of

the cost involved.

Thanks and wishing you a lot of success in Isis' treatment!

Lovely name by the way, I was going to call a baby daughter Amelie

Isis, but now it's a little Aidan!

Kind Regards, Cerstin (mum to Aidan/Squishy)

> Hello all. Hope everyone is well.

>

> Isis had her first appointment with Dr Blecher yesterday, at the

> Kings College Hospital in London. We had a little bit of a wait

> before we got to see him, but we didn't mind too much because

> it meant we got to talk to some of the other families that were at

> the clinic (it was very busy!). No one had a bad word to say about

> Dr Blecher or the helmet, everyone praised it highly.

>

> Dr Blecher was lovely and put us at ease straight away. He

> explained everything to us, and then took measurements of

> Isis's head. Her asymmetry is 2.5 cm, which puts her in the

> severe group apparently. So we had her cast done, and we pick

> her helmet up in 2 weeks. She was very good throughout

> everything and only cried a little towards the end of the casting.

I

> am very proud of her.

>

> For anyone in the UK who is deliberating on whether to see Dr

> Blecher or not, I wholeheartedly reccommend him. He was such

> a nice doctor.

>

> Thank you to those who reccommended him to us. We are very,

> very appreciative.

>

> Faye ...

> Hampshire, UK

> mum to Caitlyn-10yrs(SOD, reg. blind, EDS), Harvey-5yrs(EDS),

> Isis-6 mths(EDS, right occupital Plagio)

>

> p.s. to anyone who has emailed me in the last 2 weeks.. my

> email acc is playing up at the moment and i am having trouble

> getting to them. bear with me and i will get back to you soon!

[Guest guest]

Glad that everything went well, Faye. Can't wait to see a picture of

her in it!

Natasha

> Hello all. Hope everyone is well.

>

> Isis had her first appointment with Dr Blecher yesterday, at the

> Kings College Hospital in London. We had a little bit of a wait

> before we got to see him, but we didn't mind too much because

> it meant we got to talk to some of the other families that were at

> the clinic (it was very busy!). No one had a bad word to say about

> Dr Blecher or the helmet, everyone praised it highly.

>

> Dr Blecher was lovely and put us at ease straight away. He

> explained everything to us, and then took measurements of

> Isis's head. Her asymmetry is 2.5 cm, which puts her in the

> severe group apparently. So we had her cast done, and we pick

> her helmet up in 2 weeks. She was very good throughout

> everything and only cried a little towards the end of the casting.

I

> am very proud of her.

>

> For anyone in the UK who is deliberating on whether to see Dr

> Blecher or not, I wholeheartedly reccommend him. He was such

> a nice doctor.

>

> Thank you to those who reccommended him to us. We are very,

> very appreciative.

>

> Faye ...

> Hampshire, UK

> mum to Caitlyn-10yrs(SOD, reg. blind, EDS), Harvey-5yrs(EDS),

> Isis-6 mths(EDS, right occupital Plagio)

>

> p.s. to anyone who has emailed me in the last 2 weeks.. my

> email acc is playing up at the moment and i am having trouble

> getting to them. bear with me and i will get back to you soon!

[Guest guest]

Hello Faye

I'm sooo glad to hear that everything went well, and that Isis will

be in her helmet soon. 2.5cm is indeed severe. She is on the road

for a rounder noggin now. ) Being put in a helmet at 61/2 months

is exellent timing. You will see some awsome correction. Keep us

updated on Isis, and on how the fitting goes.

In advance. The more sever the plagio the more the helmet slips and

slids at first till they start to redirect growth.

Sandy Willow's Mom

Germany

> Hello all. Hope everyone is well.

>

> Isis had her first appointment with Dr Blecher yesterday, at the

> Kings College Hospital in London. We had a little bit of a wait

> before we got to see him, but we didn't mind too much because

> it meant we got to talk to some of the other families that were at

> the clinic (it was very busy!). No one had a bad word to say about

> Dr Blecher or the helmet, everyone praised it highly.

>

> Dr Blecher was lovely and put us at ease straight away. He

> explained everything to us, and then took measurements of

> Isis's head. Her asymmetry is 2.5 cm, which puts her in the

> severe group apparently. So we had her cast done, and we pick

> her helmet up in 2 weeks. She was very good throughout

> everything and only cried a little towards the end of the casting.

I

> am very proud of her.

>

> For anyone in the UK who is deliberating on whether to see Dr

> Blecher or not, I wholeheartedly reccommend him. He was such

> a nice doctor.

>

> Thank you to those who reccommended him to us. We are very,

> very appreciative.

>

> Faye ...

> Hampshire, UK

> mum to Caitlyn-10yrs(SOD, reg. blind, EDS), Harvey-5yrs(EDS),

> Isis-6 mths(EDS, right occupital Plagio)

>

> p.s. to anyone who has emailed me in the last 2 weeks.. my

> email acc is playing up at the moment and i am having trouble

> getting to them. bear with me and i will get back to you soon!

[Guest guest]

Hi Faye

Good to hear your news, Lucia picked up her helmet from Dr Blecher

two weeks ago, and has had no trouble with it, apart from when it

has been humid and she sweats quite a bit(we bought an air

conditioning unit and that has sorted the problem out, we all sit

there freezing to death now!). But she has a very sensitive skin and

sweats at the drop of a hat, so you may well not have this anyway.

As you say, Dr Blecher is very competent, but more than that, he is

very caring and dedicated to his work- you do feel it is a safe pair

of hands.

My little girl, Lucia has asymmetry of 2.3cm, so we'll let you know

how we are doing, given we are starting from more or less the same

place. You managed to start treatment a bit earlier (3 weeks) which

is always a help.

Anyway- fantastic news, let us know how the first few days go- I

don't think most people have had too much trouble (except as Sandy,

Willow's mum has flagged up, the hemlet does slip a bit).

We are talking aboaut all the UK people meeting up in London at some

point for a little 'hem=lmet baby convention'- I don't know where

you live, but we'll post the details.

Keep in touch

Hannah (Lucia's mum, UK)

> Hello all. Hope everyone is well.

>

> Isis had her first appointment with Dr Blecher yesterday, at the

> Kings College Hospital in London. We had a little bit of a wait

> before we got to see him, but we didn't mind too much because

> it meant we got to talk to some of the other families that were at

> the clinic (it was very busy!). No one had a bad word to say about

> Dr Blecher or the helmet, everyone praised it highly.

>

> Dr Blecher was lovely and put us at ease straight away. He

> explained everything to us, and then took measurements of

> Isis's head. Her asymmetry is 2.5 cm, which puts her in the

> severe group apparently. So we had her cast done, and we pick

> her helmet up in 2 weeks. She was very good throughout

> everything and only cried a little towards the end of the casting.

I

> am very proud of her.

>

> For anyone in the UK who is deliberating on whether to see Dr

> Blecher or not, I wholeheartedly reccommend him. He was such

> a nice doctor.

>

> Thank you to those who reccommended him to us. We are very,

> very appreciative.

>

> Faye ...

> Hampshire, UK

> mum to Caitlyn-10yrs(SOD, reg. blind, EDS), Harvey-5yrs(EDS),

> Isis-6 mths(EDS, right occupital Plagio)

>

> p.s. to anyone who has emailed me in the last 2 weeks.. my

> email acc is playing up at the moment and i am having trouble

> getting to them. bear with me and i will get back to you soon!

[Guest guest]

Thank you so much. I am learning more all the time

Grandma to Jennicah (plagio, mild tort, and low muscle tone)

[Guest guest]

Cerstin,

The appointment is a private one, but Dr Blecher does not

charge for any of the consultations, they are all free. The only

cost is for the making of the helmet. This is about £1000, but if

finances are tight, Dr Blecher will help out. He told us when we

saw him that if he could do it all for free he would. He is doing

the service as part of a longterm study on plagio, in the hope that

treatment will one day be available on the NHS. Dr Blecher

makes no money on doing this.. it is a labour of love for him.

Hope this helps,

Faye

> > Hello all. Hope everyone is well.

> >

> > Isis had her first appointment with Dr Blecher yesterday, at

the

> > Kings College Hospital in London. We had a little bit of a wait

> > before we got to see him, but we didn't mind too much

because

> > it meant we got to talk to some of the other families that were

at

> > the clinic (it was very busy!). No one had a bad word to say

about

> > Dr Blecher or the helmet, everyone praised it highly.

> >

> > Dr Blecher was lovely and put us at ease straight away. He

> > explained everything to us, and then took measurements of

> > Isis's head. Her asymmetry is 2.5 cm, which puts her in the

> > severe group apparently. So we had her cast done, and we

pick

> > her helmet up in 2 weeks. She was very good throughout

> > everything and only cried a little towards the end of the

casting.

> I

> > am very proud of her.

> >

> > For anyone in the UK who is deliberating on whether to see

Dr

> > Blecher or not, I wholeheartedly reccommend him. He was

such

> > a nice doctor.

> >

> > Thank you to those who reccommended him to us. We are

very,

> > very appreciative.

> >

> > Faye ...

> > Hampshire, UK

> > mum to Caitlyn-10yrs(SOD, reg. blind, EDS),

Harvey-5yrs(EDS),

> > Isis-6 mths(EDS, right occupital Plagio)

> >

> > p.s. to anyone who has emailed me in the last 2 weeks.. my

> > email acc is playing up at the moment and i am having

trouble

> > getting to them. bear with me and i will get back to you soon!

[Guest guest]

Hi Faye,

I'm glad the appt went so well. My Hannah had similar measurments

to Isis and has had great correction from her DOCbands. I'm sure

you'll be very pleased w/Isis' results. Be sure to let us know how

the fitting goes.

, mom to Hannah, DOCband #3 3/30

Cape Cod, Ma

> Hello all. Hope everyone is well.

>

> Isis had her first appointment with Dr Blecher yesterday, at the

> Kings College Hospital in London. We had a little bit of a wait

> before we got to see him, but we didn't mind too much because

> it meant we got to talk to some of the other families that were at

> the clinic (it was very busy!). No one had a bad word to say about

> Dr Blecher or the helmet, everyone praised it highly.

>

> Dr Blecher was lovely and put us at ease straight away. He

> explained everything to us, and then took measurements of

> Isis's head. Her asymmetry is 2.5 cm, which puts her in the

> severe group apparently. So we had her cast done, and we pick

> her helmet up in 2 weeks. She was very good throughout

> everything and only cried a little towards the end of the casting.

I

> am very proud of her.

>

> For anyone in the UK who is deliberating on whether to see Dr

> Blecher or not, I wholeheartedly reccommend him. He was such

> a nice doctor.

>

> Thank you to those who reccommended him to us. We are very,

> very appreciative.

>

> Faye ...

> Hampshire, UK

> mum to Caitlyn-10yrs(SOD, reg. blind, EDS), Harvey-5yrs(EDS),

> Isis-6 mths(EDS, right occupital Plagio)

>

> p.s. to anyone who has emailed me in the last 2 weeks.. my

> email acc is playing up at the moment and i am having trouble

> getting to them. bear with me and i will get back to you soon!

[Guest guest]

Hi again,

thanks for your reply! I've been in touch with Dr Blecher now. Can't

wait to get an appointment. Helmets for £1000 or more seems a lot,

but when it comes to our children, I guess we all just find money we

didn't know we had... but it would be good if the NHS would cover

things like that.

Hope to hear from you again to see how Isis' treatment is going!

Good Luck, Cerstin

> > > Hello all. Hope everyone is well.

> > >

> > > Isis had her first appointment with Dr Blecher yesterday, at

> the

> > > Kings College Hospital in London. We had a little bit of a wait

> > > before we got to see him, but we didn't mind too much

> because

> > > it meant we got to talk to some of the other families that were

> at

> > > the clinic (it was very busy!). No one had a bad word to say

> about

> > > Dr Blecher or the helmet, everyone praised it highly.

> > >

> > > Dr Blecher was lovely and put us at ease straight away. He

> > > explained everything to us, and then took measurements of

> > > Isis's head. Her asymmetry is 2.5 cm, which puts her in the

> > > severe group apparently. So we had her cast done, and we

> pick

> > > her helmet up in 2 weeks. She was very good throughout

> > > everything and only cried a little towards the end of the

> casting.

> > I

> > > am very proud of her.

> > >

> > > For anyone in the UK who is deliberating on whether to see

> Dr

> > > Blecher or not, I wholeheartedly reccommend him. He was

> such

> > > a nice doctor.

> > >

> > > Thank you to those who reccommended him to us. We are

> very,

> > > very appreciative.

> > >

> > > Faye ...

> > > Hampshire, UK

> > > mum to Caitlyn-10yrs(SOD, reg. blind, EDS),

> Harvey-5yrs(EDS),

> > > Isis-6 mths(EDS, right occupital Plagio)

> > >

> > > p.s. to anyone who has emailed me in the last 2 weeks.. my

> > > email acc is playing up at the moment and i am having

> trouble

> > > getting to them. bear with me and i will get back to you soon!