Re: Bar length problem continues

[Guest guest]

Dawn,

My mail coming through from Yahoo! was pretty spotty last week and I never saw

your response. Sorry about that.

I don't know very much about the doctors in Germany, so I can't say who would be

likely to answer your emails and who wouldn't. I do know that Naomi in

Manchester is usually open to consulting via email. Her address is: naomi.

davis @ cmmc . nhs. uk (without all the spaces). She'll be out of town at the

end of the week attending a CF symposium in South Africa.

I don't know that it is particularly harmful to have a bar that it is too short,

though I do think that a too short bar puts quite a bit of pressure on the hips

and knees. If it is causing non-compliance, then it is a big problem.

I don't know how open your doctor is, but the French version of the Global-HELP

booklet is now available online at:

http://www.global-help.org/publications/books/help_cfponsetifrench.pdf

Here's what it has to say about bar length (page 16)--you can show this to your

doctor as back-up in asking for a longer bar:

" La barre doit avoir

une longueur suffisante pour que l’écartement entre le talon des deux

chaussures corresponde à la largeur des épaules. Une erreur habituelle

est de prescrire une barre trop courte avec laquelle l’enfant ne se sent

pas à l’aise [3]. Une barre étroite est une cause habituelle de perte de

compliance au traitement. "

The translator (who is in Marseilles) might be of help to you as well (an email

address is listed on page 3) as far as getting a new FAB or referring you to

another physician closer to you.

Dawn, I hope some of this helps.

Naomi

The Family, North Coast of California

Naomi Hannah(2/21/1) Jonah(6/20/3, corrected BCF, FAB 12-14/7)

Dawn Szarke wrote:

Well it's been almost a week now since I e-mailed the MD in Stuttgart

and he hasn't written back yet...he might be on vacation. In the

meantime I wanted to know if it is harming anything w/ a bar length

that might be too short other than comfort problems.

I have to admit I have been liberal w/ having his bar off at night.

As in, last night he woke up crying hard when he turned over for a

position change. He has been trying new positions (lying on his

belly, on his side, legs up in the air). His legs seemed very

sensitive. I took his bar off for a couple of hours during the night.

He is fine during the night.

Also I posted one more picture of him and of course his feet. It's

very difficult to take pics of a 6month olds feet

FYI:he has a s/p unilateral left clubfoot

Thanks,

Dawn

-

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[Guest guest]

Thanks again Naomi. I just e-mailed Dr , hopefully she will get

my message before she leaves. In the meantime, we'll get through

this until we hear back from either Dr Eberhardt or Dr .

If I have to, I will challenge him, but I would rather not challenge

the MD we have unless I know exactly for sure w/ another physician

backing me... " ce n'est pas la peine "

Dawn

> Well it's been almost a week now since I e-mailed the MD in

Stuttgart

> and he hasn't written back yet...he might be on vacation. In the

> meantime I wanted to know if it is harming anything w/ a bar

length

> that might be too short other than comfort problems.

>

> I have to admit I have been liberal w/ having his bar off at

night.

> As in, last night he woke up crying hard when he turned over for a

> position change. He has been trying new positions (lying on his

> belly, on his side, legs up in the air). His legs seemed very

> sensitive. I took his bar off for a couple of hours during the

night.

> He is fine during the night.

>

> Also I posted one more picture of him and of course his feet.

It's

> very difficult to take pics of a 6month olds feet

>

> FYI:he has a s/p unilateral left clubfoot

>

> Thanks,

> Dawn

>

> -

>

>

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