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Re: My child Kreed

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Carie - welcome. Your doctor needs to sign a form requiring Hospital Homebound

services. He needs to specify what illnesses your son should miss for and what

contagious diseases he should be kept home for. The county will then be

required to school him at your house (although it will only be a fraction of the

time he would have gotten during regular school hours).

He will also not be counted absent and will get credit for all work. If this

starts now it will be much easier in middle and high school when grades and

attendance truly matter.

Do not sign anything granting them direct access to the doctors or medical

records. Make sure that his doctor is aware that the school has had a change of

heart and is being " difficult " . His office should be on guard as to who sends

what forms for " release " of information.

Do you know which Primary Immune Disease he has been diagnosed with? What part

of the country are you from? What treatment have the doctors offered so far?

Ursula - mom to (13) and Macey (11, CVID)

http://www.primaryimmune.org

http://www.jmfworld.org

http://members.cox.net/maceyh

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I am from Az in the US. The doctor is wanting to do double dose IVIG for

his immune system. I do not know yet for the SCAD. He was diagnosed with

common variable immunodeficiency, which is a type primary humoral

immunodeficiency.

I actually would like him in school when he or others are not ill, or at

least after his IVIG treatments have taken effect of his immune system.

They say I HAVE to sign the release. Do I not have to?

_____

From: [mailto: ] On Behalf Of

Ursula Holleman

Sent: Friday, August 18, 2006 1:59 PM

Subject: Re: My child Kreed

Carie - welcome. Your doctor needs to sign a form requiring Hospital

Homebound services. He needs to specify what illnesses your son should miss

for and what contagious diseases he should be kept home for. The county will

then be required to school him at your house (although it will only be a

fraction of the time he would have gotten during regular school hours).

He will also not be counted absent and will get credit for all work. If this

starts now it will be much easier in middle and high school when grades and

attendance truly matter.

Do not sign anything granting them direct access to the doctors or medical

records. Make sure that his doctor is aware that the school has had a change

of heart and is being " difficult " . His office should be on guard as to who

sends what forms for " release " of information.

Do you know which Primary Immune Disease he has been diagnosed with? What

part of the country are you from? What treatment have the doctors offered so

far?

Ursula - mom to (13) and Macey (11, CVID)

http://www.primaryi <http://www.primaryimmune.org> mmune.org

http://www.jmfworld <http://www.jmfworld.org> .org

http://members. <http://members.cox.net/maceyh> cox.net/maceyh

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No you do not have to. The form signed by the doctor (which allows him to

fluctuate his attendance based on his exposure or sickness) will be enough. A

small summary letter by the doctor outlining his diagnosis, prognosis and

accomodations is nice to offer but NO you do not have to release his medical

records to them.

Will they just do the one time dose or will he start monthly treatment? Does he

do a daily antibiotic? I am not familiar with SCAD?

My daughter Macey is 11 and has CVID and my husband Les has CVID. Macey takes

IgG weekly and an antibiotic, Les takes an antibiotic.

We live in Georgia.

Ursula - mom to (13) and Macey (11, CVID)

http://www.primaryimmune.org

http://www.jmfworld.org

http://members.cox.net/maceyh

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It will be a monthly treatment yes.

_____

From: [mailto: ] On Behalf Of

Ursula Holleman

Sent: Friday, August 18, 2006 2:22 PM

Subject: Re: My child Kreed

No you do not have to. The form signed by the doctor (which allows him to

fluctuate his attendance based on his exposure or sickness) will be enough.

A small summary letter by the doctor outlining his diagnosis, prognosis and

accomodations is nice to offer but NO you do not have to release his medical

records to them.

Will they just do the one time dose or will he start monthly treatment? Does

he do a daily antibiotic? I am not familiar with SCAD?

My daughter Macey is 11 and has CVID and my husband Les has CVID. Macey

takes IgG weekly and an antibiotic, Les takes an antibiotic.

We live in Georgia.

Ursula - mom to (13) and Macey (11, CVID)

http://www.primaryi <http://www.primaryimmune.org> mmune.org

http://www.jmfworld <http://www.jmfworld.org> .org

http://members. <http://members.cox.net/maceyh> cox.net/maceyh

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You need to get an IEP put into place ASAP! Contact the Special Education

Coordinator (or teacher) for your district. The IEP is a LEGAL document that

requires the school to provide for your child's needs. You need to figure

out what you want to have available for your child to accommodate his needs.

Be sure to include any tutoring you might want -- one family put into their

IEP that their child will get one hour of tutoring (during school time) per

day missed at school. You might need homebound schooling. The only document

the schools need from your doctors is a letter. Good-luck.

Pam

Tim - CVID age 16

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