Re: HELP!!! Ursula anybody............

[Guest guest]

If they want to go back on gamma, see if SubQ is an option. We love it. My son's

veins were also shot, so we decided to try it instead of a port. Works like a

charm and is not as tramatic. We schedule it around his life-not the other way

around. When they are teens and active, I feel like it is a wonderful solution.

Of course, amoxicillin is easier! LOL. Just a thought based on our experiences.

@...: fourdangers@...: Sat, 5 Jan 2008

15:01:13 -0800Subject: HELP!!! Ursula anybody............

My name is Jerri and I am a long time mostly lurker here. We are from Atlanta.

My dd is 14y.o. She was diagnosed with Selective Antibody Deficiency at

the age of 6 by Dr. here at Egleston. She does not make

antibodies to streptococcal pneumonia. Had 6 infections with pneumonia in 2

years. Prior had constant ear infections and asthma issues. She went on IVIG for

6 years until she was about 11. Had not breakthrough infections at all during

this time. Towards the end of 5th grade Dr. wanted to try her on

prophylactic antibiotic therapy and come off of the IVIG. We went on 500mg of

Amoxicillin 2x dy. We have been doing this for close to 3 years now. She had no

breakthrough infections. sees a dermatologist for acne and he put her on

Doryx a tetracylcine antiobiotic on November 30 of this year. We saw Dr.

a few days later. He pondered it and then checked with somebody in

pharmacy area at Emory/Egleston and decided that the Doryx should cover her for

the immune system deficiency as well as theacne. He took her off of the

Amoxicillin .So all she has been on for the last month is the Doryx and Advair.

On Xmas day she started with a little cough no biggie though. We left for

ton,SC on 12/30. On 1/2 she started running a high fever, saying it hurt

to breath some onthe left side. We rushed her to MUSC in ton. The final

diagnosis was streptococcal pneumonia. She got Rocephin 2000mg through IV and

breathing treatments with Xopenex. We caught it in time thank goodness and she

was only there 2 nights. They send her home on Augmentin and with a breathing

exerciser thing to help get the stuff out of her lungs. And breathing treatments

of course.We got an appt not with Dr. but with his associate Dr. Demuth

for Wed. The people at MUSC didnot seem to impressed with his decision to use

Doryx as a prophylactic antibiotic. I am wondering now of course myself about

that. Also, what the next course of action should be.. PHillips at one time

said,(this was before the whole Doryx thing) that if she had a breakthrough

infection on the prophlactic antibiotic that she would have to go back on IVIG.

Well, her veins are shot from the years of monthly IV " S. She never had a port,

though it was discussed. I am wondering if she should go back on Amoxcillin and

see what happens. Or if they will want to do IVIG this time with a port. She had

done so well on the Amoxcillin. Any ideas or suggestions???????????Does anyone

know anything about Dr.

Demuth?Thanks,JerriJerri---------------------------------Be a better friend,

newshound, and know-it-all with Mobile. Try it now.[Non-text portions of

this message have been removed]

_________________________________________________________________

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[Guest guest]

I was just googling Sub-Q when I saw your message pop up.

How exactly does it work? I'm a little intimidated by it. Wondering if I

would be able to do it myself. What if you mess up?

laura smith <iamlaurasmith@...> wrote:

If they want to go back on gamma, see if SubQ is an option. We love it. My son's

veins were also shot, so we decided to try it instead of a port. Works like a

charm and is not as tramatic. We schedule it around his life-not the other way

around. When they are teens and active, I feel like it is a wonderful solution.

Of course, amoxicillin is easier! LOL. Just a thought based on our experiences.

@...: fourdangers@...: Sat, 5 Jan 2008

15:01:13 -0800Subject: HELP!!! Ursula anybody............

My name is Jerri and I am a long time mostly lurker here. We are from Atlanta.

My dd is 14y.o. She was diagnosed with Selective Antibody Deficiency at

the age of 6 by Dr. here at Egleston. She does not make

antibodies to streptococcal pneumonia. Had 6 infections with pneumonia in 2

years. Prior had constant ear infections and asthma issues. She went on IVIG for

6 years until she was about 11. Had not breakthrough infections at all during

this time. Towards the end of 5th grade Dr. wanted to try her on

prophylactic antibiotic therapy and come off of the IVIG. We went on 500mg of

Amoxicillin 2x dy. We have been doing this for close to 3 years now. She had no

breakthrough infections. sees a dermatologist for acne and he put her on

Doryx a tetracylcine antiobiotic on November 30 of this year. We saw Dr.

a few days later. He pondered it and then checked with somebody in

pharmacy area at Emory/Egleston and decided that the Doryx

should cover her for the immune system deficiency as well as theacne. He took

her off of the Amoxicillin .So all she has been on for the last month is the

Doryx and Advair. On Xmas day she started with a little cough no biggie though.

We left for ton,SC on 12/30. On 1/2 she started running a high fever,

saying it hurt to breath some onthe left side. We rushed her to MUSC in

ton. The final diagnosis was streptococcal pneumonia. She got Rocephin

2000mg through IV and breathing treatments with Xopenex. We caught it in time

thank goodness and she was only there 2 nights. They send her home on Augmentin

and with a breathing exerciser thing to help get the stuff out of her lungs. And

breathing treatments of course.We got an appt not with Dr. but with his

associate Dr. Demuth for Wed. The people at MUSC didnot seem to impressed with

his decision to use Doryx as a prophylactic antibiotic. I am wondering now of

course myself about that. Also, what the next

course of action should be.. PHillips at one time said,(this was before the

whole Doryx thing) that if she had a breakthrough infection on the prophlactic

antibiotic that she would have to go back on IVIG. Well, her veins are shot from

the years of monthly IV " S. She never had a port, though it was discussed. I am

wondering if she should go back on Amoxcillin and see what happens. Or if they

will want to do IVIG this time with a port. She had done so well on the

Amoxcillin. Any ideas or suggestions???????????Does anyone know anything about

Dr. Demuth?Thanks,JerriJerri---------------------------------Be a better friend,

newshound, and know-it-all with Mobile. Try it now.[Non-text portions of

this message have been removed]

__________________________________________________________

Get the power of Windows + Web with the new Windows Live.

http://www.windowslive.com?ocid=TXT_TAGHM_Wave2_powerofwindows_012008

[Guest guest]

We had a visiting nurse train me on Sub-q. She was with us for 3 sessions

and then I was on my own. Although I found the process intimidating, as I

have no medical training, it quickly becomes routine. It's basically a

matter of hooking up a bunch of tubing to a syringe and a pump, then

sticking small needle's in your child so they can get the medicine. The

needle part was the hardest for us (they're kind of like thumb tacks).

Vivaglobin has videos and a step-by-step photo directions to help you out.

With everything you've been through ... this will be easy!!!!

Sue in NY

On Jan 5, 2008 7:11 PM, jerri dangerfield <fourdangers@...> wrote:

> I was just googling Sub-Q when I saw your message pop up.

> How exactly does it work? I'm a little intimidated by it. Wondering if I

> would be able to do it myself. What if you mess up?

>

>

> laura smith <iamlaurasmith@... <iamlaurasmith%40hotmail.com>>

> wrote:

>

> If they want to go back on gamma, see if SubQ is an option. We love it. My

> son's veins were also shot, so we decided to try it instead of a port. Works

> like a charm and is not as tramatic. We schedule it around his life-not the

> other way around. When they are teens and active, I feel like it is a

> wonderful solution. Of course, amoxicillin is easier! LOL. Just a thought

> based on our experiences.

>

> @... <%40From>:

> fourdangers@... <fourdangers%40Date>: Sat, 5 Jan 2008

> 15:01:13 -0800Subject: HELP!!! Ursula anybody............

>

> My name is Jerri and I am a long time mostly lurker here. We are from

> Atlanta. My dd is 14y.o. She was diagnosed with Selective Antibody

> Deficiency at the age of 6 by Dr. here at Egleston. She does

> not make antibodies to streptococcal pneumonia. Had 6 infections with

> pneumonia in 2 years. Prior had constant ear infections and asthma issues.

> She went on IVIG for 6 years until she was about 11. Had not breakthrough

> infections at all during this time. Towards the end of 5th grade Dr.

> wanted to try her on prophylactic antibiotic therapy and come off

> of the IVIG. We went on 500mg of Amoxicillin 2x dy. We have been doing this

> for close to 3 years now. She had no breakthrough infections. sees a

> dermatologist for acne and he put her on Doryx a tetracylcine antiobiotic on

> November 30 of this year. We saw Dr. a few days later. He pondered

> it and then checked with somebody in pharmacy area at Emory/Egleston and

> decided that the Doryx

> should cover her for the immune system deficiency as well as theacne. He

> took her off of the Amoxicillin .So all she has been on for the last month

> is the Doryx and Advair. On Xmas day she started with a little cough no

> biggie though. We left for ton,SC on 12/30. On 1/2 she started

> running a high fever, saying it hurt to breath some onthe left side. We

> rushed her to MUSC in ton. The final diagnosis was streptococcal

> pneumonia. She got Rocephin 2000mg through IV and breathing treatments with

> Xopenex. We caught it in time thank goodness and she was only there 2

> nights. They send her home on Augmentin and with a breathing exerciser thing

> to help get the stuff out of her lungs. And breathing treatments of

> course.We got an appt not with Dr. but with his associate Dr.

> Demuth for Wed. The people at MUSC didnot seem to impressed with his

> decision to use Doryx as a prophylactic antibiotic. I am wondering now of

> course myself about that. Also, what the next

> course of action should be.. PHillips at one time said,(this was before

> the whole Doryx thing) that if she had a breakthrough infection on the

> prophlactic antibiotic that she would have to go back on IVIG. Well, her

> veins are shot from the years of monthly IV " S. She never had a port, though

> it was discussed. I am wondering if she should go back on Amoxcillin and see

> what happens. Or if they will want to do IVIG this time with a port. She had

> done so well on the Amoxcillin. Any ideas or suggestions???????????Does

> anyone know anything about Dr.

> Demuth?Thanks,JerriJerri---------------------------------Be a better friend,

> newshound, and know-it-all with Mobile. Try it now.[Non-text portions

> of this message have been removed]

>

> __________________________________________________________

> Get the power of Windows + Web with the new Windows Live.

> http://www.windowslive.com?ocid=TXT_TAGHM_Wave2_powerofwindows_012008

>

>

[Guest guest]

We got a DVD to look at showing a infusion step by step. You can have Vivaglobin

send you one. I never thought I could stick my son, but it is no big deal. We

have been doing it since summer and it's kinda routine now.

Vivaglobin also has a flip book that goes step by step. You will be trained by a

professional until you are comfortable by yourself. This may take until YOU are

ready. Also there is a 1-800# for questions, but I have called once and the

nurse wasn't sure what to do. Other times, the nurses were very knowledgable.

It's really simple. My 11yr old can do almost all of it himself-except for the

sticks. If you decide to do it, Email me and if we have the same set, you can

call me if you have questions. I might not know the answers, but someone on here

will! LOL We have had just about everything go wrong at one time or another, so

we can fix most stuff from experience.

@...: fourdangers@...: Sat, 5 Jan 2008

16:11:28 -0800Subject: RE: HELP!!! Ursula anybody............

I was just googling Sub-Q when I saw your message pop up. How exactly does it

work? I'm a little intimidated by it. Wondering if I would be able to do it

myself. What if you mess up? laura smith <iamlaurasmith@...> wrote:If

they want to go back on gamma, see if SubQ is an option. We love it. My son's

veins were also shot, so we decided to try it instead of a port. Works like a

charm and is not as tramatic. We schedule it around his life-not the other way

around. When they are teens and active, I feel like it is a wonderful solution.

Of course, amoxicillin is easier! LOL. Just a thought based on our experiences.

@...: fourdangers@...: Sat, 5 Jan 2008

15:01:13 -0800Subject: HELP!!! Ursula anybody............My name is

Jerri and I am a long time mostly lurker here. We are from Atlanta. My dd

is 14y.o. She was diagnosed with Selective Antibody Deficiency at the age of 6

by Dr. here at Egleston. She does not make antibodies to

streptococcal pneumonia. Had 6 infections with pneumonia in 2 years. Prior had

constant ear infections and asthma issues. She went on IVIG for 6 years until

she was about 11. Had not breakthrough infections at all during this time.

Towards the end of 5th grade Dr. wanted to try her on prophylactic

antibiotic therapy and come off of the IVIG. We went on 500mg of Amoxicillin 2x

dy. We have been doing this for close to 3 years now. She had no breakthrough

infections. sees a dermatologist for acne and he put her on Doryx a

tetracylcine antiobiotic on November 30 of this year. We saw Dr. a few

days later. He pondered it and then checked with somebody in pharmacy area at

Emory/Egleston and decided that the Doryxshould cover her for the immune system

deficiency as well as theacne. He took her off of the Amoxicillin .So all she

has been on for the last month is the Doryx and Advair. On Xmas day she started

with a little cough no biggie though. We left for ton,SC on 12/30. On 1/2

she started running a high fever, saying it hurt to breath some onthe left side.

We rushed her to MUSC in ton. The final diagnosis was streptococcal

pneumonia. She got Rocephin 2000mg through IV and breathing treatments with

Xopenex. We caught it in time thank goodness and she was only there 2 nights.

They send her home on Augmentin and with a breathing exerciser thing to help get

the stuff out of her lungs. And breathing treatments of course.We got an appt

not with Dr. but with his associate Dr. Demuth for Wed. The people at

MUSC didnot seem to impressed with his decision to use Doryx as a prophylactic

antibiotic. I am wondering now of course myself about that. Also, what the

nextcourse of action should be.. PHillips at one time said,(this was before the

whole Doryx thing) that if she had a breakthrough infection on the prophlactic

antibiotic that she would have to go back on IVIG. Well, her veins are shot from

the years of monthly IV " S. She never had a port, though it was discussed. I am

wondering if she should go back on Amoxcillin and see what happens. Or if they

will want to do IVIG this time with a port. She had done so well on the

Amoxcillin. Any ideas or suggestions???????????Does anyone know anything about

Dr. Demuth?Thanks,JerriJerri---------------------------------Be a better friend,

newshound, and know-it-all with Mobile. Try it now.[Non-text portions of

this message have been removed]

__________________________________________________________Get the power of

Windows + Web with the new Windows

Live.http://www.windowslive.com?ocid=TXT_TAGHM_Wave2_powerofwindows_012008[Non-t\

ext portions of this message have been

removed]Jerri---------------------------------Looking for last minute shopping

deals? Find them fast with Search.[Non-text portions of this message have

been removed]

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_VideoChat_distantfamily_012008

[Guest guest]

Jerri-

if your daughter does have to go back on IVIG- have you considered sub-q--

my daughter is 16 and does sub-q on her own (with our supervison)- it gives

her a sense of control over her disease and the weekly sub-q has helped her with

chronic fatique.

just a suggestion-

I am not familiar with your doctors as we live in the suburbs of Chicago-but

there is never anything wrong with going for a second opinion.

Sue Petrelli

mom to 16 yr old w cvid

Bartlett, IL

jerri dangerfield <fourdangers@...> wrote:

[Guest guest]

Jerri,

I am not sure if it is an option but what about SCIG?? We to had a problem

with our daughters veins being shot(not to mention the trauma of an IV) we

switched in September and I am so happy with it. It is so much better for her

than IV. Good luck and God Bless

(mom to Hope,6, undiagnosed immune deficiency,dilated cardiomyopathy,

pustular psoriasis,receives SCIG weekly)

jerri dangerfield <fourdangers@...> wrote:

My name is Jerri and I am a long time mostly lurker here. We are from

Atlanta.

My dd is 14y.o. She was diagnosed with Selective Antibody Deficiency at

the age of 6 by Dr. here at Egleston. She does not make

antibodies to streptococcal pneumonia. Had 6 infections with pneumonia in 2

years. Prior had constant ear infections and asthma issues. She went on IVIG for

6 years until she was about 11. Had not breakthrough infections at all during

this time. Towards the end of 5th grade Dr. wanted to try her on

prophylactic antibiotic therapy and come off of the IVIG. We went on 500mg of

Amoxicillin 2x dy. We have been doing this for close to 3 years now. She had no

breakthrough infections. sees a dermatologist for acne and he put her on

Doryx a tetracylcine antiobiotic on November 30 of this year. We saw Dr.

a few days later. He pondered it and then checked with somebody in

pharmacy area at Emory/Egleston and decided that the Doryx should cover her for

the immune system deficiency as well as the

acne. He took her off of the Amoxicillin .

So all she has been on for the last month is the Doryx and Advair. On Xmas day

she started with a little cough no biggie though. We left for ton,SC on

12/30. On 1/2 she started running a high fever, saying it hurt to breath some

onthe left side. We rushed her to MUSC in ton. The final diagnosis was

streptococcal pneumonia. She got Rocephin 2000mg through IV and breathing

treatments with Xopenex. We caught it in time thank goodness and she was only

there 2 nights. They send her home on Augmentin and with a breathing exerciser

thing to help get the stuff out of her lungs. And breathing treatments of

course.

We got an appt not with Dr. but with his associate Dr. Demuth for Wed.

The people at MUSC didnot seem to impressed with his decision to use Doryx as a

prophylactic antibiotic. I am wondering now of course myself about that. Also,

what the next course of action should be.. PHillips at one time said,(this was

before the whole Doryx thing) that if she had a breakthrough infection on the

prophlactic antibiotic that she would have to go back on IVIG. Well, her veins

are shot from the years of monthly IV " S. She never had a port, though it was

discussed. I am wondering if she should go back on Amoxcillin and see what

happens. Or if they will want to do IVIG this time with a port. She had done so

well on the Amoxcillin. Any ideas or suggestions???????????

Does anyone know anything about Dr. Demuth?

Thanks,

Jerri

Jerri

---------------------------------

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

I have a 12 year old son on Sub Q after being on IVIg for 7 years. It is so easy

and we have some much more flexibility. you will learn and she will be able to

do it for herself before you know it.

BARBIE

HELP!!! Ursula anybody..... .......

My name is Jerri and I am a long time mostly lurker here. We are from Atlanta.

My dd is 14y.o. She was diagnosed with Selective Antibody Deficiency at

the age of 6 by Dr. here at Egleston. She does not make

antibodies to streptococcal pneumonia. Had 6 infections with pneumonia in 2

years. Prior had constant ear infections and asthma issues. She went on IVIG for

6 years until she was about 11. Had not breakthrough infections at all during

this time. Towards the end of 5th grade Dr. wanted to try her on

prophylactic antibiotic therapy and come off of the IVIG. We went on 500mg of

Amoxicillin 2x dy. We have been doing this for close to 3 years now. She had no

breakthrough infections. sees a dermatologist for acne and he put her on

Doryx a tetracylcine antiobiotic on November 30 of this year. We saw Dr.

a few days later. He pondered it and then checked with somebody in

pharmacy area at Emory/Egleston and decided

that the Doryx

should cover her for the immune system deficiency as well as theacne. He took

her off of the Amoxicillin .So all she has been on for the last month is the

Doryx and Advair. On Xmas day she started with a little cough no biggie though.

We left for ton,SC on 12/30. On 1/2 she started running a high fever,

saying it hurt to breath some onthe left side. We rushed her to MUSC in

ton. The final diagnosis was streptococcal pneumonia. She got Rocephin

2000mg through IV and breathing treatments with Xopenex. We caught it in time

thank goodness and she was only there 2 nights. They send her home on Augmentin

and with a breathing exerciser thing to help get the stuff out of her lungs. And

breathing treatments of course.We got an appt not with Dr. but with his

associate Dr. Demuth for Wed. The people at MUSC didnot seem to impressed with

his decision to use Doryx as a prophylactic antibiotic. I am wondering now of

course myself about that.

Also, what the next

course of action should be.. PHillips at one time said,(this was before the

whole Doryx thing) that if she had a breakthrough infection on the prophlactic

antibiotic that she would have to go back on IVIG. Well, her veins are shot from

the years of monthly IV " S. She never had a port, though it was discussed. I am

wondering if she should go back on Amoxcillin and see what happens. Or if they

will want to do IVIG this time with a port. She had done so well on the

Amoxcillin. Any ideas or suggestions? ????????? ?Does anyone know anything about

Dr. Demuth?Thanks, JerriJerri- --------- --------- --------- -----Be a better

friend, newshound, and know-it-all with Mobile. Try it now.[Non-text

portions of this message have been removed]

____________ _________ _________ _________ _________ _________ _

Get the power of Windows + Web with the new Windows Live.

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