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Ursula,

Hi, hope things are going well with everyone. Hope all the dads out

there had a great day. We celebrated our youngest Abby's 2nd B-day

today along with Father's Day.

Yes, luckily has good veins. She wouldn't if the inusrance cop.

had anything to say about it. Did want to pay for her blood tests done

at the hospital, only at a satelite lab where the blood is then taken

to the hospital. Talk about stupid. Can't have her blood work done at

a satelite lab. She gets them so frequently at lest 3 times a week

sotimes more if she runs a fever. All see needs is a finger prick for

a CBC with manual diffs,. The satelite labs dont do finger pricks.

One week she had 5 done.

After a long talk they are not even charging us the co-pay. She has a

chonic non-cancerous blood disease.

===

and

(neutropenic and immune deficent)

mom to Evan 6, 4 and Abby Rose (almost 2)

_________________________________________________________

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  • 2 weeks later...
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Autumn

Maddie's response to pneumovax wasn't a zero but a jump from three to five

(or 5 to 7) which the ped said was basically ineffective.

Her body acknowledged the pneumovax but didn't create antibodies.

Kimberley

----------

> From: Autti@...

> To: PedPIDonelist

> Subject: Re: Hello

> Date: Tuesday, 6 July 1999 11:43

>

> From: Autti@...

>

> Dear and Annette (and anyone else that this might apply to),

>

> When you state that your child does not respond to the pneummovax,

exactly

> what do you mean? Do they not make enough protection or are the numbers

all

> zeros?

> I ask because of the Cd5-Cd19 PID. If they are all -0-'s then your

children

> should be checked for the Cd5-Cd19n PID. It is very rare to not respond

at

> all, and what I mean by that....is all zeros to 12 out of 12 titers.

Many

> physicians will call a patient a non-responder when they do not have

enough

> protection/antibody to the pneummovax, while this terminology is correct

in a

> sense, it is different then the Cd5-Cd19 PID who do not make any response

at

> all...not a mark on the page. Addtionally, these patients will not

make

> any response to HIB or meningococcus. If this is the case, then it would

be

> wise to run a Cd5+ test on them (which is quite specific and certain

> guidelines must be followed by the discovering physician to prevent

error).

> To date there have not been any females found with this PID. PLEASE let

me

> know if you need more information. Annette, I know that you have already

> mentioned this to your immunologist.

>

> Just curious!!!!

>

> Autumn mom to Mark Cd5-Cd19 PID/ A1A, Samter's, GERD

>

> ---------------------------

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,

Thank you for responding. I have spent countless hours trying to understand

my sons very rare (7 boys in the world) PID. It is newly discovered (1997)

and we continue to look for adults or females....or males.

Thanks again,

Autumn

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  • 6 years later...
Guest guest

> >

> > Hello all,

> >

> > First off, I'm new to this group and find this site very

> informative.

> > I've just recently purchased a BW2, and waiting on its arrival.

A

> > question for all you veteran users: is one rep of a 6-8 second

hold

> > really beneficial? I have alwys adhered to the practice of

multiple

> > reps and sets with freeweights and machines. I am just anxious

to

> hear

> > what has worked for you all. Finally, I really appreciate the

chance

> > to participaten in this group.

> >

> > Thanks,

> > Brawn

> >

>

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