Re: 11y/o with selective iga deficiency

[Guest guest]

Welcome!

We are still pretty new to both this group and to IVIG so others here are better

source of input...they have been helpful to me already though - just wanted to

welcome you.

mom to amanda, 15, CVID, chronic migraines

sthappy22 <degood02@...> wrote: My son 11 years old, selective iga

deficiency. Chronic sinusitis,

pneumonia last year. Recieved booster shot last august prior to start

of school. Placed on 5ml's of bactrim from AUG untill approx 2weeks

ago. Did very will over the winter months. Off Bactrim for 2 weeks now

he is sick again. Placed on Augmentum, temps been as high as 103.5,

today is the 3rd day. Appointment with Immunologist Thursday, sounds

he will be placed back on the bactrim for the summer then recieve

another booster shot in August. Presented with option by his doctor as

to start IVIG Ifusion therapy or continue with the Im injection and

Bactrim. Injection last a few months then levels drop. Not sure what

course to take. I guess we are still in the trial and error stage. Not

sure were to go. Joined this site hoping to gain some insight, looking

for good news. Live in Cleveland ohio, Immunologist from Rainbows

babies and children Hospital. New to all of this!

This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the sole

responsibility of the poster and should not be taken as professional advice.

To unsubscribe -unsubscribegroups (DOT)

To search group archives go to: /messages

[Guest guest]

Thank you!

nancy barnes <nancyb315@...> wrote: Welcome!

We are still pretty new to both this group and to IVIG so others here are better

source of input...they have been helpful to me already though - just wanted to

welcome you.

mom to amanda, 15, CVID, chronic migraines

sthappy22 <degood02@...> wrote: My son 11 years old, selective iga

deficiency. Chronic sinusitis,

pneumonia last year. Recieved booster shot last august prior to start

of school. Placed on 5ml's of bactrim from AUG untill approx 2weeks

ago. Did very will over the winter months. Off Bactrim for 2 weeks now

he is sick again. Placed on Augmentum, temps been as high as 103.5,

today is the 3rd day. Appointment with Immunologist Thursday, sounds

he will be placed back on the bactrim for the summer then recieve

another booster shot in August. Presented with option by his doctor as

to start IVIG Ifusion therapy or continue with the Im injection and

Bactrim. Injection last a few months then levels drop. Not sure what

course to take. I guess we are still in the trial and error stage. Not

sure were to go. Joined this site hoping to gain some insight, looking

for good news. Live in Cleveland ohio, Immunologist from Rainbows

babies and children Hospital. New to all of this!

This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the sole

responsibility of the poster and should not be taken as professional advice.

To unsubscribe -unsubscribegroups (DOT)

To search group archives go to: /messages

[Guest guest]

Welcome to the group. Our daughter is 11 and has CVID. She received

subcutaneous IgG replacement each week. She has been diagnosed for 8 1/2

yrs. What type of booster shot is he getting? IgG or pneumovax? Our

daughter is also well in the winter but cruddy in the summer. She was on

Bactrim and Septra alternating months for 7 yrs and just recently switched

to daily Vantin. She does not run fevers but has the headaches and

stuffiness of sinus infection and then either cultures infection from her

sinuses (thankfully we've only had to do that twice) or has a positive CT

scan for sinusitis.

Who is your doctor at Rainbow babies? Also members should sign all posts

with at least their name but preferably their childs name also and

diagnosis.

Again welcome to the group and I hope he feels better soon.

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

http://members.cox.net/maceyh

Immune Deficiency Foundation http://www.primaryimmune.org

Pediatric PID email list

Modell Foundation http://jmfworld.org

[Guest guest]

Thanks. My son received the prevnar last august, will see the Dr. this

Thursday since he has been sick again, hope to develope a plan of action.

Hopefully is better by then. This is all still new to me, trying to

understand everything, so Im trying to gain more knowledge on his condition. I

believe My son will be placed back on the Bactrim at least until August then

another evaluation, I have concerns with him being on the antibiotics for so

long, I didn't think this was common practice. 's doc is Dr. Choulsky.

Thanks!. Learning my way around this site and hoping to find answers.

s overly worried dad, Dennis

Ursula Holleman <uahollem1@...> wrote:

Welcome to the group. Our daughter is 11 and has CVID. She received

subcutaneous IgG replacement each week. She has been diagnosed for 8 1/2

yrs. What type of booster shot is he getting? IgG or pneumovax? Our

daughter is also well in the winter but cruddy in the summer. She was on

Bactrim and Septra alternating months for 7 yrs and just recently switched

to daily Vantin. She does not run fevers but has the headaches and

stuffiness of sinus infection and then either cultures infection from her

sinuses (thankfully we've only had to do that twice) or has a positive CT

scan for sinusitis.

Who is your doctor at Rainbow babies? Also members should sign all posts

with at least their name but preferably their childs name also and

diagnosis.

Again welcome to the group and I hope he feels better soon.

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

http://members.cox.net/maceyh

Immune Deficiency Foundation http://www.primaryimmune.org

Pediatric PID email list

Modell Foundation http://jmfworld.org

This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the sole

responsibility of the poster and should not be taken as professional advice.

To unsubscribe -unsubscribegroups (DOT)

To search group archives go to: /messages

[Guest guest]

Dennis,

your 'worry' for your son stems from love and concern...it is admirable that you

are seeking info to make informed decisions re your sons care...some father's

prefer to leave all that to the moms...kudos to you for being actively involved

in his care.

Repeated long term antibiotics are worrisome...keep seeking answers until you

feel satisfied is getting what is best for ...and welcome to the

group.

mom to , 15, CVID, chronic daily migraines (cdm)

Dennis Goodrich <degood02@...> wrote: Thanks. My son received

the prevnar last august, will see the Dr. this Thursday since he has been sick

again, hope to develope a plan of action. Hopefully is better by then.

This is all still new to me, trying to understand everything, so Im trying to

gain more knowledge on his condition. I believe My son will be placed back on

the Bactrim at least until August then another evaluation, I have concerns with

him being on the antibiotics for so long, I didn't think this was common

practice. 's doc is Dr. Choulsky. Thanks!. Learning my way around this site

and hoping to find answers.

s overly worried dad, Dennis

Ursula Holleman <uahollem1@...> wrote:

Welcome to the group. Our daughter is 11 and has CVID. She received

subcutaneous IgG replacement each week. She has been diagnosed for 8 1/2

yrs. What type of booster shot is he getting? IgG or pneumovax? Our

daughter is also well in the winter but cruddy in the summer. She was on

Bactrim and Septra alternating months for 7 yrs and just recently switched

to daily Vantin. She does not run fevers but has the headaches and

stuffiness of sinus infection and then either cultures infection from her

sinuses (thankfully we've only had to do that twice) or has a positive CT

scan for sinusitis.

Who is your doctor at Rainbow babies? Also members should sign all posts

with at least their name but preferably their childs name also and

diagnosis.

Again welcome to the group and I hope he feels better soon.

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

http://members.cox.net/maceyh

Immune Deficiency Foundation http://www.primaryimmune.org

Pediatric PID email list

Modell Foundation http://jmfworld.org

This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the sole

responsibility of the poster and should not be taken as professional advice.

To unsubscribe -unsubscribegroups (DOT)

To search group archives go to: /messages

[Guest guest]

" My son 11 years old, selective iga deficiency...Presented with option by his

doctor as to start IVIG Ifusion therapy or continue with the Im injection and

Bactrim...I guess we are still in the trial and error stage. Not sure were to

go "

Hi! Was this from Dennis?

My daughter has CVID and her unique vulnerability is her gut. She does not

tolerate any oral anti-microbials (antibiotics and antivirals). For her, we

have to keep her IgG levels high enough to minimize any medication and, so far,

she has done well. She is also IgA deficient (as well as IgM, IgE) and has

T-cell dysfunction, but IgG therapy has enabled her to live without antibiotics

and saved her life.

For us, there was nothing to negotiate: she could no longer tolerate

antibiotics so we had to give her a heavy dose of IVIG -- and I wish that we had

never given her a trial of antibiotic therapy before starting IVIG. We were

told, by the way, that the replacement IgG would NOT help her missing IgA but it

actually did help. Our daughter's hematologist later told us that high doses of

IgG can diffuse into locations (mucous membranes) where IgA is normally present

and improve outcomes.

All this to say that, I suppose that the choice to use antibiotics or not

depends may depend on the child's unique tolerance to them, effectiveness of the

drug, and the integrity of the child's gut -- though most (> 50%) of children

with immune problems have GI issues.

mom to Dani, CVIDer

[Guest guest]

From Dennis yes, thanks for the insight. Very helpful information. Great info on

this site, very helpfull since this is new to me and my son. The ivig infusion i

believe to be gammagard sd or polygam sd. My son tolerates the antibiotics

well, so far, no severe side effects. Getting prepared for appointment with

immunologist on thurs, all the info that I have obtained here will help, hope

the doc has some time, millions of questions. Thank you very much, Dennis and

son .

Schulman <dietdoc@...> wrote: " My son 11 years old, selective

iga deficiency...Presented with option by his doctor as to start IVIG Ifusion

therapy or continue with the Im injection and Bactrim...I guess we are still in

the trial and error stage. Not sure were to go "

Hi! Was this from Dennis?

My daughter has CVID and her unique vulnerability is her gut. She does not

tolerate any oral anti-microbials (antibiotics and antivirals). For her, we

have to keep her IgG levels high enough to minimize any medication and, so far,

she has done well. She is also IgA deficient (as well as IgM, IgE) and has

T-cell dysfunction, but IgG therapy has enabled her to live without antibiotics

and saved her life.

For us, there was nothing to negotiate: she could no longer tolerate

antibiotics so we had to give her a heavy dose of IVIG -- and I wish that we had

never given her a trial of antibiotic therapy before starting IVIG. We were

told, by the way, that the replacement IgG would NOT help her missing IgA but it

actually did help. Our daughter's hematologist later told us that high doses of

IgG can diffuse into locations (mucous membranes) where IgA is normally present

and improve outcomes.

All this to say that, I suppose that the choice to use antibiotics or not

depends may depend on the child's unique tolerance to them, effectiveness of the

drug, and the integrity of the child's gut -- though most (> 50%) of children

with immune problems have GI issues.

mom to Dani, CVIDer