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Re: Jaecky again.

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Bruce & Robin,

My friends son is on prophylactic antibiotics (septrin) for respiratory

infections. He is still having treatment for leukaemia at the moment but I

think the prophylactic antibiotics have to continue for some time after his

treatment finishes. He has had repeated pneumonia's and almost died from

pneumonia 6 wks after his treatment for leukaemia started in Jan 1998. It

seems to be helping although he does still get chest infections but not

nearly as severe as before.

hope this helps.

Sending good thoughts and prayers for Jaecky.

Elaine mum to Elise (8yrs) & Jack (3yrs) CHaRGE

Dumfries,Scotland

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Dear Bruce, Robyn and Jaecky,

It's no wonder I go to bed and pray myself to sleep. The wars yawl fight!

They wear me out reading them! I WILL continue to pray.

God bless yawl!

Bruce and Robyn wrote:

> Hi All,

>

> No suspense story this time; he's just having a lousy time of it right now.

> He eventually got over his 'money box' episode but, once the antibiotics

> wore off, he's headed downhill again. Robyn had him into hospital yesterday

> morning because he wasn't doing too well. They checked him, drugged him,

> and sent him home. At about midnight last night he was worse rather than

> better and got into a state of respiratory distress by the time she got him

> back to the hospital.

>

> They're now talking about putting him onto a prophylactic antibiotic regime

> for his airway infections on the basis that prevention is better than cure.

> Is anyone here on such a program? Jaecky has it for his kidney reflux

> already, but we don't know of it otherwise. Maybe there is an antibiotic

> that could double for both?

>

> Any prayers for Jaecky will be greatly appreciated please.

>

> Chantelle, we will pray for your friend. May God's grace bring a wonderful

> outcome from it through our Lord Jesus Christ.

>

> God bless you,

>

> Bruce and Robyn, Jaecky 3 Multiple-hypoplasia alias CHARgE+.

> Christchurch, NZ.

>

>

> " 5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July

> 20-22, 2001. Information will be available first in CHARGE Accounts, the

> CHARGE Syndrome Foundation's newsletter. "

>

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

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Dear Bruce, Robyn and Jaecky,

It's no wonder I go to bed and pray myself to sleep. The wars yawl fight!

They wear me out reading them! I WILL continue to pray.

God bless yawl!

Bruce and Robyn wrote:

> Hi All,

>

> No suspense story this time; he's just having a lousy time of it right now.

> He eventually got over his 'money box' episode but, once the antibiotics

> wore off, he's headed downhill again. Robyn had him into hospital yesterday

> morning because he wasn't doing too well. They checked him, drugged him,

> and sent him home. At about midnight last night he was worse rather than

> better and got into a state of respiratory distress by the time she got him

> back to the hospital.

>

> They're now talking about putting him onto a prophylactic antibiotic regime

> for his airway infections on the basis that prevention is better than cure.

> Is anyone here on such a program? Jaecky has it for his kidney reflux

> already, but we don't know of it otherwise. Maybe there is an antibiotic

> that could double for both?

>

> Any prayers for Jaecky will be greatly appreciated please.

>

> Chantelle, we will pray for your friend. May God's grace bring a wonderful

> outcome from it through our Lord Jesus Christ.

>

> God bless you,

>

> Bruce and Robyn, Jaecky 3 Multiple-hypoplasia alias CHARgE+.

> Christchurch, NZ.

>

>

> " 5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July

> 20-22, 2001. Information will be available first in CHARGE Accounts, the

> CHARGE Syndrome Foundation's newsletter. "

>

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

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Bruce andRobyn,

Aari was on prophylactic anitbiotics for the first three

years...helped with infections but didn't do a lot for his reactive

acute asthma episodes.. but I'd swear it kept the inpatient days

down...

Casey

Mom to Dawn 21 HH, Ken 11 ADHD, 8 CHARGE

ICQ 728514 AIM ZeeCasey

CHARGE Web Page:

http://www.geocities.com/Heartland/1220

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Hi!

Our prayers our with Jaecob and you. We have not had to " go there " yet, but

were told that may need to be hospitalized and desensitized, then

maintained throughout the cold season (November to May here) on one of the

antibiotics that he is allergic to. This is if he becomes allergic to or the

remaining 2 options (zithromax and biaxin) do not work for an infection.

Cheryl, , (7), (5, CHaRGE)

MI

>>> BRJR.WILLIAMS@... 10/27/00 07:55PM >>>

Hi All,

No suspense story this time; he's just having a lousy time of it right now.

He eventually got over his 'money box' episode but, once the antibiotics

wore off, he's headed downhill again. Robyn had him into hospital yesterday

morning because he wasn't doing too well. They checked him, drugged him,

and sent him home. At about midnight last night he was worse rather than

better and got into a state of respiratory distress by the time she got him

back to the hospital.

They're now talking about putting him onto a prophylactic antibiotic regime

for his airway infections on the basis that prevention is better than cure.

Is anyone here on such a program? Jaecky has it for his kidney reflux

already, but we don't know of it otherwise. Maybe there is an antibiotic

that could double for both?

Any prayers for Jaecky will be greatly appreciated please.

Chantelle, we will pray for your friend. May God's grace bring a wonderful

outcome from it through our Lord Jesus Christ.

God bless you,

Bruce and Robyn, Jaecky 3 Multiple-hypoplasia alias CHARgE+.

Christchurch, NZ.

" 5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July

20-22, 2001. Information will be available first in CHARGE Accounts, the

CHARGE Syndrome Foundation's newsletter. "

For information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter)

please contact marion@... or visit

the CHARGE Syndrome Foundation web page

at http://www.chargesyndrome.org

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