RE: New and so glad to have found this group!

[Guest guest]

Hi ,

Welcome! The only question I will tackle is about your 7 yo. I am in the

same situation. I have a healthy 8 yo and 2 younger siblings with medical

conditions. What has helped her the most has been to meet other kids her age

who have a sibling with a condition. She has made many friends this way & I

have found it pretty much has taken care of everything. As far as the drop of

the hat part, she has made great friends at the RMH that she keeps in contact

with over the internet and she has a good friend that she stays with when we are

in-patient at our local hosp. To her its like going to camp or some other

adventure. I guess it's all how you look at it and kids tend to look for the

positives in a negative. The one long-lasting effect of her situation is she

will NEVER consider any career in medicine. She wants nothing to do with

anything her brother and sister have been thru.

-

<hobbsfamily@...> wrote:

Wow, how I wish I knew about this group 2 years ago! Let me

introduce myself. I am Hobbs and the mom of 3 great kids -

(7), (4), and Meredith (2). is the one with

the known immune deficiency. He has hypogammaglobulinemia and

pneumococcal antibody deficiency and has been on IVIG (Gamunex) for

19 months now. We are currently testing Meredith, as her first set

of labs showed low IgG and 1/14 serotype response to Prevnar. We are

in the process of a pneumovax challenge and have her repeat labs in 3

weeks. She has definitely been following in her brother's footsteps,

though, and I'm preparing for the worst but hoping for the best.

They both have a metabolic disorder called glycogen storage disease

which affects their ability to store extra sugar for time between

meals and at night. Because of this, they both have g tubes for

overnight feeds and for continuous use when they're sick to try to

avoid a hospital stay on D10. I have " met " Candise Ott and Carie

Garrett on the FOD site (not what my kiddos have, but was suspected

for a while which is how I got plugged into that group) but found out

about this group from .

Having an immune deficiency on top of a metabolic disorder certainly

complicates things. However, I have been naively thinking that

getting on IVIG would solve all our problems with recurrent

illnesses. Before diagnosis, was constantly on antibiotics

for sinus or ear infections, but never had any major infections. He

would get more stomach bugs than usual, which resulted in numerous

hospital stays, but the bacterial infections were always upper

respiratory stuff. He did get a cut on his toe (actually ripped the

nail off) and smashed in thumb and both got a minor infection, but

again, not a huge deal. Certainly not life threatening or anything.

Then, last week happened. At 4pm on Tuesday, started

complaining that his stomach hurt. He actually cried all the way

home from 's ballet class and I just thought he must be really

tired, although he woke up from a nap in the car screaming. We made

it home and he laid on the couch for 2 hours. I called our home

health nurse to come look at his Mickey button to see if she could do

something to help. He had complained of pain before and we let some

water out of the balloon, so I'm thinking this will be easy. She

came over and said he felt warm so we took his temp - 99.6. Since he

was tender, she suggested we change out the button and see if that

made a difference. When she took the old one out, the new one

wouldn't go back in. Well, that's an emergency, so off we go to the

ER. This was our first visit since May, which is HUGE for us. We

get there and the doctor sees us immediately and can't get it in,

either. He asked me about the tenderness and I said he had that

before we started messing with him and that was why we tried to

change it. He ran a CBC and did a CT scan of his belly (temp is only

99.6 there, too). He came back in and said he couldn't let us go

because his WBC was over 19,000 and his scan showed cellulitis around

the site. So, 3 days of vancomycin and clindamycin later (and

reinsertion of g tube), he is recovering at home on oral clindamycin

for another week and hopefully in the clear.

My concerns are: why did this happen to begin with? We were told

that infections around g tubes basically don't happen because the

stomach is so acidic it kills everything. Second, this happened 25

days after IVIG (we normally go every 28 days). I have informed his

immunologist about this (we live in Huntsville, AL but our

immunologist is in Gainesville, FL because it's also where our GSD

specialist is, so our pediatrician handles everything and he's

wonderful!) and they are going to get back to me this week about

their recommendations. His IgG level while we were in was 616, but

his last pneumococcal trough (done in January) showed low antibody

responses still and if he started having more infections, we'd need

to up the IVIG dose. He currently gets about 0.45g/kg. Third, why

was his temp never over 99.6?! For an infection of this magnitude,

it should be at least 102. It's going to make it hard for me to

recognize when he's really sick if this is all he's going to do.

When I asked his ped if I needed to bring him in for a CBC everytime

he runs a low grade fever and he said, " if he's in pain you do. "

Scary! If I hadn't needed to get his tube put back in, I never would

have gone to the ER that night and don't know how long I would have

waited to get him looked at because he was only hurting a lot if

someone touched it. He went bad so fast, he could have easily gotten

septic if I had waited much longer! I definitely feel he had God's

hand of protection on him that night!

Any suggestions or comments are welcomed and appreciated! I needed

to get this out there. I think I need to re-asess how I think about

and look at things. His immune deficiency is more serious than I've

led myself to believe and, sadly, he seems to be getting worse. His

labs have indicated a slow progression of his disease the last 2

years, which is one of the main reasons I'm so concerned about

Meredith because she's already " more low " in IgG than he was at her

age and we've checked her over the last 9 months and she has gotten

worse herself during a period when her IgG should be increasing, not

decreasing. If this next set of labs aren't any better, do I push to

start IVIG even though she had less than 12 individual infections in

the last 18 months? Her problem seems to be that she gets multiple

site infections together such as both ears and kidney infection or

both ears, RSV, and rotavirus in 3 days. She's not on antibiotics as

much as was before IVIG but has proven resistance to some

already.

And, how to deal with a 7 year old that has 2 siblings with chronic

disease!? I am homeschooling her (for many reasons, but PI is

definitely factoring in) but it's difficult when mommy has to rush to

the hospital and leave her with friends for 3 days. My husband

travels a lot for work and was in Las Vegas this past week. I left

the girls with our home health nurse until I realized this wasn't

going to be a quick trip and sent a friend over in the middle of the

night to keep them the rest of the week. She was able to visit once

and I talked with her on the phone, but it's got to be hard on a kid

to have your life turned upside down at the drop of a hat!

Thanks and I look forward to sharing this journey with you!

Mom to , 7 unaffected

, 4 glycogen storage disease, hypogam

Meredith, 2 glycogen storage disease, ?PI

Huntsville, AL

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

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Let FareChase search your favorite travel sites to find flight and hotel

bargains.

[Guest guest]

I too understand the no fever thing. has had very few fevers and and if

does they are low. (except with an intial IVIG reaction that time it went to

101)

number wise has also detiorated along with adding low white blood cell

counts, but I have to say with him getting IVIG every 3 weeks, he has been much

" healthier " than he has been the past years. He actually was off antibiotics for

2-3 weeks in a row. which is a record for us.

I'm sorry I have no answers I just wanted you to know you're not alone!!

Missy

Mom to...

9-

Mari 4

Max 7 months

<hobbsfamily@...> wrote:

Wow, how I wish I knew about this group 2 years ago! Let me

introduce myself. I am Hobbs and the mom of 3 great kids -

(7), (4), and Meredith (2). is the one with

the known immune deficiency. He has hypogammaglobulinemia and

pneumococcal antibody deficiency and has been on IVIG (Gamunex) for

19 months now. We are currently testing Meredith, as her first set

of labs showed low IgG and 1/14 serotype response to Prevnar. We are

in the process of a pneumovax challenge and have her repeat labs in 3

weeks. She has definitely been following in her brother's footsteps,

though, and I'm preparing for the worst but hoping for the best.

They both have a metabolic disorder called glycogen storage disease

which affects their ability to store extra sugar for time between

meals and at night. Because of this, they both have g tubes for

overnight feeds and for continuous use when they're sick to try to

avoid a hospital stay on D10. I have " met " Candise Ott and Carie

Garrett on the FOD site (not what my kiddos have, but was suspected

for a while which is how I got plugged into that group) but found out

about this group from .

Having an immune deficiency on top of a metabolic disorder certainly

complicates things. However, I have been naively thinking that

getting on IVIG would solve all our problems with recurrent

illnesses. Before diagnosis, was constantly on antibiotics

for sinus or ear infections, but never had any major infections. He

would get more stomach bugs than usual, which resulted in numerous

hospital stays, but the bacterial infections were always upper

respiratory stuff. He did get a cut on his toe (actually ripped the

nail off) and smashed in thumb and both got a minor infection, but

again, not a huge deal. Certainly not life threatening or anything.

Then, last week happened. At 4pm on Tuesday, started

complaining that his stomach hurt. He actually cried all the way

home from 's ballet class and I just thought he must be really

tired, although he woke up from a nap in the car screaming. We made

it home and he laid on the couch for 2 hours. I called our home

health nurse to come look at his Mickey button to see if she could do

something to help. He had complained of pain before and we let some

water out of the balloon, so I'm thinking this will be easy. She

came over and said he felt warm so we took his temp - 99.6. Since he

was tender, she suggested we change out the button and see if that

made a difference. When she took the old one out, the new one

wouldn't go back in. Well, that's an emergency, so off we go to the

ER. This was our first visit since May, which is HUGE for us. We

get there and the doctor sees us immediately and can't get it in,

either. He asked me about the tenderness and I said he had that

before we started messing with him and that was why we tried to

change it. He ran a CBC and did a CT scan of his belly (temp is only

99.6 there, too). He came back in and said he couldn't let us go

because his WBC was over 19,000 and his scan showed cellulitis around

the site. So, 3 days of vancomycin and clindamycin later (and

reinsertion of g tube), he is recovering at home on oral clindamycin

for another week and hopefully in the clear.

My concerns are: why did this happen to begin with? We were told

that infections around g tubes basically don't happen because the

stomach is so acidic it kills everything. Second, this happened 25

days after IVIG (we normally go every 28 days). I have informed his

immunologist about this (we live in Huntsville, AL but our

immunologist is in Gainesville, FL because it's also where our GSD

specialist is, so our pediatrician handles everything and he's

wonderful!) and they are going to get back to me this week about

their recommendations. His IgG level while we were in was 616, but

his last pneumococcal trough (done in January) showed low antibody

responses still and if he started having more infections, we'd need

to up the IVIG dose. He currently gets about 0.45g/kg. Third, why

was his temp never over 99.6?! For an infection of this magnitude,

it should be at least 102. It's going to make it hard for me to

recognize when he's really sick if this is all he's going to do.

When I asked his ped if I needed to bring him in for a CBC everytime

he runs a low grade fever and he said, " if he's in pain you do. "

Scary! If I hadn't needed to get his tube put back in, I never would

have gone to the ER that night and don't know how long I would have

waited to get him looked at because he was only hurting a lot if

someone touched it. He went bad so fast, he could have easily gotten

septic if I had waited much longer! I definitely feel he had God's

hand of protection on him that night!

Any suggestions or comments are welcomed and appreciated! I needed

to get this out there. I think I need to re-asess how I think about

and look at things. His immune deficiency is more serious than I've

led myself to believe and, sadly, he seems to be getting worse. His

labs have indicated a slow progression of his disease the last 2

years, which is one of the main reasons I'm so concerned about

Meredith because she's already " more low " in IgG than he was at her

age and we've checked her over the last 9 months and she has gotten

worse herself during a period when her IgG should be increasing, not

decreasing. If this next set of labs aren't any better, do I push to

start IVIG even though she had less than 12 individual infections in

the last 18 months? Her problem seems to be that she gets multiple

site infections together such as both ears and kidney infection or

both ears, RSV, and rotavirus in 3 days. She's not on antibiotics as

much as was before IVIG but has proven resistance to some

already.

And, how to deal with a 7 year old that has 2 siblings with chronic

disease!? I am homeschooling her (for many reasons, but PI is

definitely factoring in) but it's difficult when mommy has to rush to

the hospital and leave her with friends for 3 days. My husband

travels a lot for work and was in Las Vegas this past week. I left

the girls with our home health nurse until I realized this wasn't

going to be a quick trip and sent a friend over in the middle of the

night to keep them the rest of the week. She was able to visit once

and I talked with her on the phone, but it's got to be hard on a kid

to have your life turned upside down at the drop of a hat!

Thanks and I look forward to sharing this journey with you!

Mom to , 7 unaffected

, 4 glycogen storage disease, hypogam

Meredith, 2 glycogen storage disease, ?PI

Huntsville, AL

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

Finding fabulous fares is fun.

Let FareChase search your favorite travel sites to find flight and hotel

bargains.

[Guest guest]

Hi ,

A few of our mito list mates (my boys are partial complex 1) have FOD's and

have Chemotaxis of Neutrophils---I have not a clue in outer space what that is

but these kids seem to get lots of infections and usually end up on pretty high

IGG doses.

When we were actually compliant with the IVIG we still had tons of infections

and their levels would really take a dive the last week before their dose was

due--I asked the same question--why are they still sick? We haven't had any

infections since going to sub-q (which is a pain but when you have to be

admitted for D10 when ill it seriously impacts family function and sanity--then

of course you get sick from the hospital and end up worse). We are home-bound

by the school district and I don't see that it will ever change---crisis from

infections are just not worth it.

Best wishes,

Kris

<hobbsfamily@...> wrote:

Wow, how I wish I knew about this group 2 years ago! Let me

introduce myself. I am Hobbs and the mom of 3 great kids -

(7), (4), and Meredith (2). is the one with

the known immune deficiency. He has hypogammaglobulinemia and

pneumococcal antibody deficiency and has been on IVIG (Gamunex) for

19 months now. We are currently testing Meredith, as her first set

of labs showed low IgG and 1/14 serotype response to Prevnar. We are

in the process of a pneumovax challenge and have her repeat labs in 3

weeks. She has definitely been following in her brother's footsteps,

though, and I'm preparing for the worst but hoping for the best.

They both have a metabolic disorder called glycogen storage disease

which affects their ability to store extra sugar for time between

meals and at night. Because of this, they both have g tubes for

overnight feeds and for continuous use when they're sick to try to

avoid a hospital stay on D10. I have " met " Candise Ott and Carie

Garrett on the FOD site (not what my kiddos have, but was suspected

for a while which is how I got plugged into that group) but found out

about this group from .

Having an immune deficiency on top of a metabolic disorder certainly

complicates things. However, I have been naively thinking that

getting on IVIG would solve all our problems with recurrent

illnesses. Before diagnosis, was constantly on antibiotics

for sinus or ear infections, but never had any major infections. He

would get more stomach bugs than usual, which resulted in numerous

hospital stays, but the bacterial infections were always upper

respiratory stuff. He did get a cut on his toe (actually ripped the

nail off) and smashed in thumb and both got a minor infection, but

again, not a huge deal. Certainly not life threatening or anything.

Then, last week happened. At 4pm on Tuesday, started

complaining that his stomach hurt. He actually cried all the way

home from 's ballet class and I just thought he must be really

tired, although he woke up from a nap in the car screaming. We made

it home and he laid on the couch for 2 hours. I called our home

health nurse to come look at his Mickey button to see if she could do

something to help. He had complained of pain before and we let some

water out of the balloon, so I'm thinking this will be easy. She

came over and said he felt warm so we took his temp - 99.6. Since he

was tender, she suggested we change out the button and see if that

made a difference. When she took the old one out, the new one

wouldn't go back in. Well, that's an emergency, so off we go to the

ER. This was our first visit since May, which is HUGE for us. We

get there and the doctor sees us immediately and can't get it in,

either. He asked me about the tenderness and I said he had that

before we started messing with him and that was why we tried to

change it. He ran a CBC and did a CT scan of his belly (temp is only

99.6 there, too). He came back in and said he couldn't let us go

because his WBC was over 19,000 and his scan showed cellulitis around

the site. So, 3 days of vancomycin and clindamycin later (and

reinsertion of g tube), he is recovering at home on oral clindamycin

for another week and hopefully in the clear.

My concerns are: why did this happen to begin with? We were told

that infections around g tubes basically don't happen because the

stomach is so acidic it kills everything. Second, this happened 25

days after IVIG (we normally go every 28 days). I have informed his

immunologist about this (we live in Huntsville, AL but our

immunologist is in Gainesville, FL because it's also where our GSD

specialist is, so our pediatrician handles everything and he's

wonderful!) and they are going to get back to me this week about

their recommendations. His IgG level while we were in was 616, but

his last pneumococcal trough (done in January) showed low antibody

responses still and if he started having more infections, we'd need

to up the IVIG dose. He currently gets about 0.45g/kg. Third, why

was his temp never over 99.6?! For an infection of this magnitude,

it should be at least 102. It's going to make it hard for me to

recognize when he's really sick if this is all he's going to do.

When I asked his ped if I needed to bring him in for a CBC everytime

he runs a low grade fever and he said, " if he's in pain you do. "

Scary! If I hadn't needed to get his tube put back in, I never would

have gone to the ER that night and don't know how long I would have

waited to get him looked at because he was only hurting a lot if

someone touched it. He went bad so fast, he could have easily gotten

septic if I had waited much longer! I definitely feel he had God's

hand of protection on him that night!

Any suggestions or comments are welcomed and appreciated! I needed

to get this out there. I think I need to re-asess how I think about

and look at things. His immune deficiency is more serious than I've

led myself to believe and, sadly, he seems to be getting worse. His

labs have indicated a slow progression of his disease the last 2

years, which is one of the main reasons I'm so concerned about

Meredith because she's already " more low " in IgG than he was at her

age and we've checked her over the last 9 months and she has gotten

worse herself during a period when her IgG should be increasing, not

decreasing. If this next set of labs aren't any better, do I push to

start IVIG even though she had less than 12 individual infections in

the last 18 months? Her problem seems to be that she gets multiple

site infections together such as both ears and kidney infection or

both ears, RSV, and rotavirus in 3 days. She's not on antibiotics as

much as was before IVIG but has proven resistance to some

already.

And, how to deal with a 7 year old that has 2 siblings with chronic

disease!? I am homeschooling her (for many reasons, but PI is

definitely factoring in) but it's difficult when mommy has to rush to

the hospital and leave her with friends for 3 days. My husband

travels a lot for work and was in Las Vegas this past week. I left

the girls with our home health nurse until I realized this wasn't

going to be a quick trip and sent a friend over in the middle of the

night to keep them the rest of the week. She was able to visit once

and I talked with her on the phone, but it's got to be hard on a kid

to have your life turned upside down at the drop of a hat!

Thanks and I look forward to sharing this journey with you!

Mom to , 7 unaffected

, 4 glycogen storage disease, hypogam

Meredith, 2 glycogen storage disease, ?PI

Huntsville, AL

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

No need to miss a message. Get email on-the-go

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[Guest guest]

> " I too understand the no fever thing. " and " Why was his temp never over

>99.6? "

never gets fevers either - well, one time when his WBC was 61 he had

a fever of 101.8. In our house, if he gets a fever of 99.9 that is a fever.

For my other kids I would just give them tylenol and forget about it. For

99.9 means pneumonia or some other major infection that is going to

require a minimum antibiotics and quite possibly a hospital visit.

I don't know the body mechanics of why this happens, and it has taken us 4

years to figure out, but now even our pediatrician is on board that 99.9 is

a real fever for this little guy. It seems to be very common in this group.

Kim, mom to , age 5, with Hyper Ige (also called HIES, Job's

Syndrome) and osteopenia.

[Guest guest]

osdbmom wrote:

>

>

> like Olivia(the ten yr old), is getting inadvertantly punished for

> being a healthy, " good " kid.

, I don't know whether it would work in your situation or not,

but I dated my healthy kid. I had one sick and one not sick. We picked

the 3rd because his birthday was August 3rd. And ever 3rd of every

month we went out for breakfast or lunch or dinner or a late night treat

just so we could spend some time together. Sometimes it was a real

stretch to fit it in, but I tried to be as faithful to his " date " as I

was to Katy's IVIG day. It really helped him to feel special and while

Katy complained, I think it was good for her to see that she had to

share Mommy some of the time. My husband made sure she didn't feel too

deprived -- and if she felt like it, they often did special things

together for special Daddy time.

Just an idea -- I know it may seem like overload right now. But even if

you just plan to go for a walk every once in a while with your healthy

kid -- it shows her that you are trying to give her good attention.

And it's very much worth the investment when they hit those teen years.

still treasures " our date " time. When he and his wife and son

were visiting a couple of weeks ago, he insisted that we take a " date "

lunch. So, we ran off together, just the two of us and had a salad

together.

When is your testing coming up -- aren't you waiting on an appointment?

I'm praying for you and yours right now.

In His service,

dale

[Guest guest]

Welcome , , and all the new families!

Forgive me for not having a chance to respond to you individually.

-- I'm glad you found this group! There are some terrific parent's

here. The ones that face PID and metabolic concerns, like your kids, are heros

and hopefully a few more will chime in soon. Please let us know how Meridith

does. How is doing now? There are a few children in this group who do

not mount normal fevers...so your docs may want to talk about using

different/additional cues to interpret infection severity. Also, you said you

normally go 28 days b/t IVIGs...some of the other parents go every 3 weeks

(there is one child that goes every 2 weeks).

-- a few children here have low neutrophil, WBC, as well. Mine does

and we don't have answers, yet. Perhaps a few more moms will chime in later on

this topic.

Kris V -- Hello! I did not realize that I was writing to *you*. : ) We have

some mutual friends, really wonderful ladies. I'll let you know if I learn

anything more about isohemmaglutinins. Your acid hypothesis re: SQ sounds

reasonable...and it does make me wonder about how our kids break down the other

" stuff " in the product. Mine did poorly with IVIG. She's fine with SQ,

though.

New families -- between work, PID kindergartener, and the consequent lack of

sleep, my memory is not what it used to be. Please don't hesitate to

repost/remind us of your circumstances and the aspects of your children's care

that you wish to share or discuss, as time passes. I'll do the same. : )

mom to Dani, CVID

[Guest guest]

-Dale, thanks. Im trying to do just this.......we are in MI, but I had

the going for a walk idea--I just need to wait until its

warmer.......taking her for a walk in this cold wind would be more

like a punishment:)! Today, the social worker that has been helping me

with Savannah at school, came to Olivia and told her she'd been

looking for a responsible kid to help her make posters for and work at

a Parent Expo thats coming up--helping to serve snacks and talk to

parents, etc. Olivia was really excited to be " chosen " for that. I

also thought about pulling her out of school early one day and taking

her shopping. She is a straight A student, it wont hurt her grades:)

All of my tests have come back normal, but Im still sick and still

have thrush. ID dr is as confused as family dr. He cant find any place

nearby to do the candida and mumps skin test, so he's trying to order

it himself to do in his office. Also, we found that Quest(oh, how I

just LOVE quest!!) never did run my titers he had ordered, so he

re-ordered them and I tried a different lab, so hopefully we'll get

someting found out soon.

If you're praying, Savannah can really use it just now. We're waiting

for a psychologist who works with chronically ill children--we're

waiting on a neuropsych eval. She has a wonderful social worker at

school who grew up on IVIG, for lupus and JRA, and she has a port and

still takes infusions(of chemo), so she and Savannah have a great

common bond. She has really helped us. But, this morning was really

bad. I ended up driving her to school in PJ's--she refused to dress,

eat, take meds, etc. So I loaded up the other kids, and took her in

PJs, packed her clothes, food and meds, and off we went. Took the

other kids in to school, settled them, went back out for her, and she

kicked, hit, and PUNCHED me--this is the FIRST time this has ever

happened to me!! my kids just havent been like that. Eventually, she

got dressed, ate and took her meds with her SW. The more I coddle her

the more hysterical she gets. Now she keeps saying she has always

known I dont love her--which I know she doesnt really mean, but wow,

it still hurts. AND, my 4 yr old is copying her, so every time HE

doesnt get his way, he starts screaming that I dont love him.

Shes' laying in bed, now, crying. She doesnt know why.

thanks,

valarie

-- In , Dale Weatherford <dale@...> wrote:

>

> osdbmom wrote:

> >

> >

> > like Olivia(the ten yr old), is getting inadvertantly punished for

> > being a healthy, " good " kid.

>

>

> , I don't know whether it would work in your situation or not,

> but I dated my healthy kid. I had one sick and one not sick. We

picked

> the 3rd because his birthday was August 3rd. And ever 3rd of every

> month we went out for breakfast or lunch or dinner or a late night

treat

> just so we could spend some time together. Sometimes it was a real

> stretch to fit it in, but I tried to be as faithful to his " date " as I

> was to Katy's IVIG day. It really helped him to feel special and while

> Katy complained, I think it was good for her to see that she had to

> share Mommy some of the time. My husband made sure she didn't feel too

> deprived -- and if she felt like it, they often did special things

> together for special Daddy time.

>

> Just an idea -- I know it may seem like overload right now. But

even if

> you just plan to go for a walk every once in a while with your healthy

> kid -- it shows her that you are trying to give her good attention.

> And it's very much worth the investment when they hit those teen years.

>

> still treasures " our date " time. When he and his wife and son

> were visiting a couple of weeks ago, he insisted that we take a " date "

> lunch. So, we ran off together, just the two of us and had a salad

> together.

>

> When is your testing coming up -- aren't you waiting on an appointment?

> I'm praying for you and yours right now.

>

> In His service,

> dale

>

[Guest guest]

We have attempted to make it to SibShops before but the closest is an hour

and a half away. We are planning to attend the glycogen storage disease

conference this year so hopefully she'll meet and make friends with other

unaffected siblings that way. Would love to do the IDF conference, too, but

I think trying to do one a year is plenty! She does have a great time with

the friends she stays with, but always needs that mommy-time as soon as

we're home and I'm exhausted! She was also envious of IVIG days so I

brought her to the hospital with us once. That made things worse because

she sees that gets to eat popsicles and watch movies all day! She

forgot about the accessing the port part and being hooked up to monitors. I

don't know that I would recommend that to others. :-)

Mom to , 7 unaffected

, 4 GSD, hypogam, pneumococcal AD

Meredith, 2 GSD, ?PI

Huntsville, AL

Re: New and so glad to have found this group!

Hi ,

Welcome! The only question I will tackle is about your 7 yo. I am in the

same situation. I have a healthy 8 yo and 2 younger siblings with medical

conditions. What has helped her the most has been to meet other kids her age

who have a sibling with a condition. She has made many friends this way & I

have found it pretty much has taken care of everything. As far as the drop

of the hat part, she has made great friends at the RMH that she keeps in

contact with over the internet and she has a good friend that she stays with

when we are in-patient at our local hosp. To her its like going to camp or

some other adventure. I guess it's all how you look at it and kids tend to

look for the positives in a negative. The one long-lasting effect of her

situation is she will NEVER consider any career in medicine. She wants

nothing to do with anything her brother and sister have been thru.

-

<hobbsfamily@ <mailto:hobbsfamily%40knology.net> knology.net> wrote:

Wow, how I wish I knew about this group 2 years ago! Let me

introduce myself. I am Hobbs and the mom of 3 great kids -

(7), (4), and Meredith (2). is the one with

the known immune deficiency. He has hypogammaglobulinemia and

pneumococcal antibody deficiency and has been on IVIG (Gamunex) for

19 months now. We are currently testing Meredith, as her first set

of labs showed low IgG and 1/14 serotype response to Prevnar. We are

in the process of a pneumovax challenge and have her repeat labs in 3

weeks. She has definitely been following in her brother's footsteps,

though, and I'm preparing for the worst but hoping for the best.

They both have a metabolic disorder called glycogen storage disease

which affects their ability to store extra sugar for time between

meals and at night. Because of this, they both have g tubes for

overnight feeds and for continuous use when they're sick to try to

avoid a hospital stay on D10. I have " met " Candise Ott and Carie

Garrett on the FOD site (not what my kiddos have, but was suspected

for a while which is how I got plugged into that group) but found out

about this group from .

Having an immune deficiency on top of a metabolic disorder certainly

complicates things. However, I have been naively thinking that

getting on IVIG would solve all our problems with recurrent

illnesses. Before diagnosis, was constantly on antibiotics

for sinus or ear infections, but never had any major infections. He

would get more stomach bugs than usual, which resulted in numerous

hospital stays, but the bacterial infections were always upper

respiratory stuff. He did get a cut on his toe (actually ripped the

nail off) and smashed in thumb and both got a minor infection, but

again, not a huge deal. Certainly not life threatening or anything.

Then, last week happened. At 4pm on Tuesday, started

complaining that his stomach hurt. He actually cried all the way

home from 's ballet class and I just thought he must be really

tired, although he woke up from a nap in the car screaming. We made

it home and he laid on the couch for 2 hours. I called our home

health nurse to come look at his Mickey button to see if she could do

something to help. He had complained of pain before and we let some

water out of the balloon, so I'm thinking this will be easy. She

came over and said he felt warm so we took his temp - 99.6. Since he

was tender, she suggested we change out the button and see if that

made a difference. When she took the old one out, the new one

wouldn't go back in. Well, that's an emergency, so off we go to the

ER. This was our first visit since May, which is HUGE for us. We

get there and the doctor sees us immediately and can't get it in,

either. He asked me about the tenderness and I said he had that

before we started messing with him and that was why we tried to

change it. He ran a CBC and did a CT scan of his belly (temp is only

99.6 there, too). He came back in and said he couldn't let us go

because his WBC was over 19,000 and his scan showed cellulitis around

the site. So, 3 days of vancomycin and clindamycin later (and

reinsertion of g tube), he is recovering at home on oral clindamycin

for another week and hopefully in the clear.

My concerns are: why did this happen to begin with? We were told

that infections around g tubes basically don't happen because the

stomach is so acidic it kills everything. Second, this happened 25

days after IVIG (we normally go every 28 days). I have informed his

immunologist about this (we live in Huntsville, AL but our

immunologist is in Gainesville, FL because it's also where our GSD

specialist is, so our pediatrician handles everything and he's

wonderful!) and they are going to get back to me this week about

their recommendations. His IgG level while we were in was 616, but

his last pneumococcal trough (done in January) showed low antibody

responses still and if he started having more infections, we'd need

to up the IVIG dose. He currently gets about 0.45g/kg. Third, why

was his temp never over 99.6?! For an infection of this magnitude,

it should be at least 102. It's going to make it hard for me to

recognize when he's really sick if this is all he's going to do.

When I asked his ped if I needed to bring him in for a CBC everytime

he runs a low grade fever and he said, " if he's in pain you do. "

Scary! If I hadn't needed to get his tube put back in, I never would

have gone to the ER that night and don't know how long I would have

waited to get him looked at because he was only hurting a lot if

someone touched it. He went bad so fast, he could have easily gotten

septic if I had waited much longer! I definitely feel he had God's

hand of protection on him that night!

Any suggestions or comments are welcomed and appreciated! I needed

to get this out there. I think I need to re-asess how I think about

and look at things. His immune deficiency is more serious than I've

led myself to believe and, sadly, he seems to be getting worse. His

labs have indicated a slow progression of his disease the last 2

years, which is one of the main reasons I'm so concerned about

Meredith because she's already " more low " in IgG than he was at her

age and we've checked her over the last 9 months and she has gotten

worse herself during a period when her IgG should be increasing, not

decreasing. If this next set of labs aren't any better, do I push to

start IVIG even though she had less than 12 individual infections in

the last 18 months? Her problem seems to be that she gets multiple

site infections together such as both ears and kidney infection or

both ears, RSV, and rotavirus in 3 days. She's not on antibiotics as

much as was before IVIG but has proven resistance to some

already.

And, how to deal with a 7 year old that has 2 siblings with chronic

disease!? I am homeschooling her (for many reasons, but PI is

definitely factoring in) but it's difficult when mommy has to rush to

the hospital and leave her with friends for 3 days. My husband

travels a lot for work and was in Las Vegas this past week. I left

the girls with our home health nurse until I realized this wasn't

going to be a quick trip and sent a friend over in the middle of the

night to keep them the rest of the week. She was able to visit once

and I talked with her on the phone, but it's got to be hard on a kid

to have your life turned upside down at the drop of a hat!

Thanks and I look forward to sharing this journey with you!

Mom to , 7 unaffected

, 4 glycogen storage disease, hypogam

Meredith, 2 glycogen storage disease, ?PI

Huntsville, AL

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

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[Guest guest]

Thanks, Missy! What did your immunologist say about the no fever thing?

I'm still waiting to talk with ours and was curious. It sounds like a lot

of people on IVIG go every 3 weeks instead of 4. Something else I plan to

discuss. I'm just really frustrated right now. started having

seizures again and had one Monday that lasted for 10 minutes. That along

with the cellulitis just has me on edge!

Mom to , 7 unaffected

, 4 GSD, primary ID

Meredith, 2 GSD

Huntsville, AL

Re: New and so glad to have found this group!

I too understand the no fever thing. has had very few fevers and and if

does they are low. (except with an intial IVIG reaction that time it went to

101)

number wise has also detiorated along with adding low white blood cell

counts, but I have to say with him getting IVIG every 3 weeks, he has been

much " healthier " than he has been the past years. He actually was off

antibiotics for 2-3 weeks in a row. which is a record for us.

I'm sorry I have no answers I just wanted you to know you're not alone!!

Missy

Mom to...

9-

Mari 4

Max 7 months

<hobbsfamily@ <mailto:hobbsfamily%40knology.net> knology.net> wrote:

Wow, how I wish I knew about this group 2 years ago! Let me

introduce myself. I am Hobbs and the mom of 3 great kids -

(7), (4), and Meredith (2). is the one with

the known immune deficiency. He has hypogammaglobulinemia and

pneumococcal antibody deficiency and has been on IVIG (Gamunex) for

19 months now. We are currently testing Meredith, as her first set

of labs showed low IgG and 1/14 serotype response to Prevnar. We are

in the process of a pneumovax challenge and have her repeat labs in 3

weeks. She has definitely been following in her brother's footsteps,

though, and I'm preparing for the worst but hoping for the best.

They both have a metabolic disorder called glycogen storage disease

which affects their ability to store extra sugar for time between

meals and at night. Because of this, they both have g tubes for

overnight feeds and for continuous use when they're sick to try to

avoid a hospital stay on D10. I have " met " Candise Ott and Carie

Garrett on the FOD site (not what my kiddos have, but was suspected

for a while which is how I got plugged into that group) but found out

about this group from .

Having an immune deficiency on top of a metabolic disorder certainly

complicates things. However, I have been naively thinking that

getting on IVIG would solve all our problems with recurrent

illnesses. Before diagnosis, was constantly on antibiotics

for sinus or ear infections, but never had any major infections. He

would get more stomach bugs than usual, which resulted in numerous

hospital stays, but the bacterial infections were always upper

respiratory stuff. He did get a cut on his toe (actually ripped the

nail off) and smashed in thumb and both got a minor infection, but

again, not a huge deal. Certainly not life threatening or anything.

Then, last week happened. At 4pm on Tuesday, started

complaining that his stomach hurt. He actually cried all the way

home from 's ballet class and I just thought he must be really

tired, although he woke up from a nap in the car screaming. We made

it home and he laid on the couch for 2 hours. I called our home

health nurse to come look at his Mickey button to see if she could do

something to help. He had complained of pain before and we let some

water out of the balloon, so I'm thinking this will be easy. She

came over and said he felt warm so we took his temp - 99.6. Since he

was tender, she suggested we change out the button and see if that

made a difference. When she took the old one out, the new one

wouldn't go back in. Well, that's an emergency, so off we go to the

ER. This was our first visit since May, which is HUGE for us. We

get there and the doctor sees us immediately and can't get it in,

either. He asked me about the tenderness and I said he had that

before we started messing with him and that was why we tried to

change it. He ran a CBC and did a CT scan of his belly (temp is only

99.6 there, too). He came back in and said he couldn't let us go

because his WBC was over 19,000 and his scan showed cellulitis around

the site. So, 3 days of vancomycin and clindamycin later (and

reinsertion of g tube), he is recovering at home on oral clindamycin

for another week and hopefully in the clear.

My concerns are: why did this happen to begin with? We were told

that infections around g tubes basically don't happen because the

stomach is so acidic it kills everything. Second, this happened 25

days after IVIG (we normally go every 28 days). I have informed his

immunologist about this (we live in Huntsville, AL but our

immunologist is in Gainesville, FL because it's also where our GSD

specialist is, so our pediatrician handles everything and he's

wonderful!) and they are going to get back to me this week about

their recommendations. His IgG level while we were in was 616, but

his last pneumococcal trough (done in January) showed low antibody

responses still and if he started having more infections, we'd need

to up the IVIG dose. He currently gets about 0.45g/kg. Third, why

was his temp never over 99.6?! For an infection of this magnitude,

it should be at least 102. It's going to make it hard for me to

recognize when he's really sick if this is all he's going to do.

When I asked his ped if I needed to bring him in for a CBC everytime

he runs a low grade fever and he said, " if he's in pain you do. "

Scary! If I hadn't needed to get his tube put back in, I never would

have gone to the ER that night and don't know how long I would have

waited to get him looked at because he was only hurting a lot if

someone touched it. He went bad so fast, he could have easily gotten

septic if I had waited much longer! I definitely feel he had God's

hand of protection on him that night!

Any suggestions or comments are welcomed and appreciated! I needed

to get this out there. I think I need to re-asess how I think about

and look at things. His immune deficiency is more serious than I've

led myself to believe and, sadly, he seems to be getting worse. His

labs have indicated a slow progression of his disease the last 2

years, which is one of the main reasons I'm so concerned about

Meredith because she's already " more low " in IgG than he was at her

age and we've checked her over the last 9 months and she has gotten

worse herself during a period when her IgG should be increasing, not

decreasing. If this next set of labs aren't any better, do I push to

start IVIG even though she had less than 12 individual infections in

the last 18 months? Her problem seems to be that she gets multiple

site infections together such as both ears and kidney infection or

both ears, RSV, and rotavirus in 3 days. She's not on antibiotics as

much as was before IVIG but has proven resistance to some

already.

And, how to deal with a 7 year old that has 2 siblings with chronic

disease!? I am homeschooling her (for many reasons, but PI is

definitely factoring in) but it's difficult when mommy has to rush to

the hospital and leave her with friends for 3 days. My husband

travels a lot for work and was in Las Vegas this past week. I left

the girls with our home health nurse until I realized this wasn't

going to be a quick trip and sent a friend over in the middle of the

night to keep them the rest of the week. She was able to visit once

and I talked with her on the phone, but it's got to be hard on a kid

to have your life turned upside down at the drop of a hat!

Thanks and I look forward to sharing this journey with you!

Mom to , 7 unaffected

, 4 glycogen storage disease, hypogam

Meredith, 2 glycogen storage disease, ?PI

Huntsville, AL

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

Finding fabulous fares is fun.

Let FareChase search your favorite travel sites to find flight and

hotel bargains.

[Guest guest]

Thanks for the comments, Kris. Sounds like we have a lot in common. How

long did you do IVIG and how long have you been going sub-q? We have found

ways to tolerate IVIG better - one is started him on a continuous drip of

his sick formula and running it for 3 days. Many of his side effects

(headache, nausea, vomiting, ending up in the ER) stemmed from decrease in

appetite. We run him at 45 ml/hr (which is 45 cal/hr) in addition to the

Motrin and Benadryl around the clock for those 3 days and haven't had any

more side effects! We have been told that IVIG doesn't protect again skin

infections so I don't know what we can be doing differently.

Mom to , 7 unaffected

, 4 GSD, hypogam, pneumococcal AD

Meredith, 2 GSD, ?PI

Huntsville, AL

Re: New and so glad to have found this group!

Hi ,

A few of our mito list mates (my boys are partial complex 1) have FOD's and

have Chemotaxis of Neutrophils---I have not a clue in outer space what that

is but these kids seem to get lots of infections and usually end up on

pretty high IGG doses.

When we were actually compliant with the IVIG we still had tons of

infections and their levels would really take a dive the last week before

their dose was due--I asked the same question--why are they still sick? We

haven't had any infections since going to sub-q (which is a pain but when

you have to be admitted for D10 when ill it seriously impacts family

function and sanity--then of course you get sick from the hospital and end

up worse). We are home-bound by the school district and I don't see that it

will ever change---crisis from infections are just not worth it.

Best wishes,

Kris

<hobbsfamily@ <mailto:hobbsfamily%40knology.net> knology.net> wrote:

Wow, how I wish I knew about this group 2 years ago! Let me

introduce myself. I am Hobbs and the mom of 3 great kids -

(7), (4), and Meredith (2). is the one with

the known immune deficiency. He has hypogammaglobulinemia and

pneumococcal antibody deficiency and has been on IVIG (Gamunex) for

19 months now. We are currently testing Meredith, as her first set

of labs showed low IgG and 1/14 serotype response to Prevnar. We are

in the process of a pneumovax challenge and have her repeat labs in 3

weeks. She has definitely been following in her brother's footsteps,

though, and I'm preparing for the worst but hoping for the best.

They both have a metabolic disorder called glycogen storage disease

which affects their ability to store extra sugar for time between

meals and at night. Because of this, they both have g tubes for

overnight feeds and for continuous use when they're sick to try to

avoid a hospital stay on D10. I have " met " Candise Ott and Carie

Garrett on the FOD site (not what my kiddos have, but was suspected

for a while which is how I got plugged into that group) but found out

about this group from .

Having an immune deficiency on top of a metabolic disorder certainly

complicates things. However, I have been naively thinking that

getting on IVIG would solve all our problems with recurrent

illnesses. Before diagnosis, was constantly on antibiotics

for sinus or ear infections, but never had any major infections. He

would get more stomach bugs than usual, which resulted in numerous

hospital stays, but the bacterial infections were always upper

respiratory stuff. He did get a cut on his toe (actually ripped the

nail off) and smashed in thumb and both got a minor infection, but

again, not a huge deal. Certainly not life threatening or anything.

Then, last week happened. At 4pm on Tuesday, started

complaining that his stomach hurt. He actually cried all the way

home from 's ballet class and I just thought he must be really

tired, although he woke up from a nap in the car screaming. We made

it home and he laid on the couch for 2 hours. I called our home

health nurse to come look at his Mickey button to see if she could do

something to help. He had complained of pain before and we let some

water out of the balloon, so I'm thinking this will be easy. She

came over and said he felt warm so we took his temp - 99.6. Since he

was tender, she suggested we change out the button and see if that

made a difference. When she took the old one out, the new one

wouldn't go back in. Well, that's an emergency, so off we go to the

ER. This was our first visit since May, which is HUGE for us. We

get there and the doctor sees us immediately and can't get it in,

either. He asked me about the tenderness and I said he had that

before we started messing with him and that was why we tried to

change it. He ran a CBC and did a CT scan of his belly (temp is only

99.6 there, too). He came back in and said he couldn't let us go

because his WBC was over 19,000 and his scan showed cellulitis around

the site. So, 3 days of vancomycin and clindamycin later (and

reinsertion of g tube), he is recovering at home on oral clindamycin

for another week and hopefully in the clear.

My concerns are: why did this happen to begin with? We were told

that infections around g tubes basically don't happen because the

stomach is so acidic it kills everything. Second, this happened 25

days after IVIG (we normally go every 28 days). I have informed his

immunologist about this (we live in Huntsville, AL but our

immunologist is in Gainesville, FL because it's also where our GSD

specialist is, so our pediatrician handles everything and he's

wonderful!) and they are going to get back to me this week about

their recommendations. His IgG level while we were in was 616, but

his last pneumococcal trough (done in January) showed low antibody

responses still and if he started having more infections, we'd need

to up the IVIG dose. He currently gets about 0.45g/kg. Third, why

was his temp never over 99.6?! For an infection of this magnitude,

it should be at least 102. It's going to make it hard for me to

recognize when he's really sick if this is all he's going to do.

When I asked his ped if I needed to bring him in for a CBC everytime

he runs a low grade fever and he said, " if he's in pain you do. "

Scary! If I hadn't needed to get his tube put back in, I never would

have gone to the ER that night and don't know how long I would have

waited to get him looked at because he was only hurting a lot if

someone touched it. He went bad so fast, he could have easily gotten

septic if I had waited much longer! I definitely feel he had God's

hand of protection on him that night!

Any suggestions or comments are welcomed and appreciated! I needed

to get this out there. I think I need to re-asess how I think about

and look at things. His immune deficiency is more serious than I've

led myself to believe and, sadly, he seems to be getting worse. His

labs have indicated a slow progression of his disease the last 2

years, which is one of the main reasons I'm so concerned about

Meredith because she's already " more low " in IgG than he was at her

age and we've checked her over the last 9 months and she has gotten

worse herself during a period when her IgG should be increasing, not

decreasing. If this next set of labs aren't any better, do I push to

start IVIG even though she had less than 12 individual infections in

the last 18 months? Her problem seems to be that she gets multiple

site infections together such as both ears and kidney infection or

both ears, RSV, and rotavirus in 3 days. She's not on antibiotics as

much as was before IVIG but has proven resistance to some

already.

And, how to deal with a 7 year old that has 2 siblings with chronic

disease!? I am homeschooling her (for many reasons, but PI is

definitely factoring in) but it's difficult when mommy has to rush to

the hospital and leave her with friends for 3 days. My husband

travels a lot for work and was in Las Vegas this past week. I left

the girls with our home health nurse until I realized this wasn't

going to be a quick trip and sent a friend over in the middle of the

night to keep them the rest of the week. She was able to visit once

and I talked with her on the phone, but it's got to be hard on a kid

to have your life turned upside down at the drop of a hat!

Thanks and I look forward to sharing this journey with you!

Mom to , 7 unaffected

, 4 glycogen storage disease, hypogam

Meredith, 2 glycogen storage disease, ?PI

Huntsville, AL

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

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[Guest guest]

Thanks for the reassurance, Kim. It's so hard to know when something's

wrong when they don't act or respond normally!

Mom to , 7 unaffected

, 4 GSD, hypogam, pneumococcal AD

Meredith, 2 GSD, ?PI

Huntsville, AL

Re: New and so glad to have found this group!

> " I too understand the no fever thing. " and " Why was his temp never over

>99.6? "

never gets fevers either - well, one time when his WBC was 61 he had

a fever of 101.8. In our house, if he gets a fever of 99.9 that is a fever.

For my other kids I would just give them tylenol and forget about it. For

99.9 means pneumonia or some other major infection that is going to

require a minimum antibiotics and quite possibly a hospital visit.

I don't know the body mechanics of why this happens, and it has taken us 4

years to figure out, but now even our pediatrician is on board that 99.9 is

a real fever for this little guy. It seems to be very common in this group.

Kim, mom to , age 5, with Hyper Ige (also called HIES, Job's

Syndrome) and osteopenia.

[Guest guest]

Valarie,

We do belong to a homeschool group and that's a great suggestion to

encourage rewards at school for being " well. " She is actually about to move

up to the pre-team in gymnastics and that's going to be a bigger expense,

but is something else that she can do as the healthy sibling. I can

certainly relate to the sick kids getting more time and her being jealous of

that. I actually took her to the hospital once for IVIG and she saw it as

fun since he got to eat popsicles and watch movies. Not exactly the kind of

reaction I was hoping for. She does go off and do fun things when we're at

the hospital for IVIG or anything else, but it's not with me and it's

personal time with me that she craves! There's only so much of me to go

around and the illnesses and other problems get first priority. I try to

take her out and do special stuff on occasion and it helps that she's the

oldest so I can let her stay up later, etc.

Mom to , 7 unaffected

, 4 GSD, hypogam, pneumococcal AD

Meredith, 2 GSD, ?PI

Huntsville, AL

New and so glad to have found this group!

Hi, ,

Im sorry things are tough right now. I have 3 kids with PID, all of

them on IVIG, and one ten yr old daughter who has asthma/allergies but

otherwise in pretty good health. I am currently struggling, much as

you describe, and the other 3 kids are pretty high need, and I feel

like Olivia(the ten yr old), is getting inadvertantly punished for

being a healthy, " good " kid. She is a good girl, helpful, responsible,

and an excellent student.......and she gets the least attention, etc.

Im working on this, but.....its just like there isnt enough ME to go

around. Im sure you understand the feeling. I try...but gosh. I can

only do so much. My 9 yr old is really having a difficult time right

now, dealing with her illnesses, etc.......and struggling with panic

attacks, phobias, separation anxiey, and generally is either screaming

like a banshee or laying despondantly on the couch--not eating much,

not doing anything(unless she is screaming:). So that has been taking

up a lot of time/attention, but what can I do? I've been trying to

delegate......my kids DO go to school, so Im trying to utilize

that....do you belong to a homeschool group, or anything where your 7

yr old might get to do something special? Ive asked some school staff

to enlist Olivia to be a helper---telling her they need someone

responsible, helpful to do a job...something to make her feel like it

IS worth it to not be sick and cranky all the time--bc in her eyes,

being sick EARNS the other kids extra time with me.......she is quite

jealous over IVIG day, or days at the hospital, bc she feels like the

other kids are getting my attention and she is getting left out.

Welcome to the group!!

valarie

[Guest guest]

--

ROFL!!! dang it, I did the same exact thing. " oh , you think IVIG day

is so fun? come with us then! " and I got, well, yeah, but we got to

play video games, go online, eat happy meals, etc etc. and Im all--but

THEY GOT IVS!! and it doesnt matter---all she sees is the time and

attention.

sheesh.

I was pleased that Monday the school social worker pulled Olivia aside

and asked for her help--told her she had been looking for some very

responsible kids to help with the parent expo coming up--she needs

signs made, and flyers put out, and " waitress " type help the night of,

and Olivia was so proud to be asked. and when Savannah got huffy and

said maybe she would get asked too--LOL Olivia just looked at her

sideways and muttered--I doubt it. She's looking for RESPONSIBLE

kids!! and savannah was like........well. yeah. bc she knows she isnt

very responsible.

Some nights, all I can do is let Olivia stay up a little later and

then lay in bed with her and talk a while, holding her hand. but I

try. anyway, I felt like, doing something special at school might help

her see that, aside from home, there are other areas in life where

being a good kid/healthy kid pays off. so maybe we can help to turn

her thinking around that way. sometimes, I get her up early and make

her hair in fancy braids or curl it or something, bc then I know

people will stop her and say its pretty, and she'll get a little

attention that way.

Ive said it before---but some days I think I need a wife. someone else

to help me do all the things I do!!

hang in there,

valarie

- In , " Hobbs " <hobbsfamily@...> wrote:

>

> Valarie,

>

> We do belong to a homeschool group and that's a great suggestion to

> encourage rewards at school for being " well. " She is actually about

to move

> up to the pre-team in gymnastics and that's going to be a bigger

expense,

> but is something else that she can do as the healthy sibling. I can

> certainly relate to the sick kids getting more time and her being

jealous of

> that. I actually took her to the hospital once for IVIG and she saw

it as

> fun since he got to eat popsicles and watch movies. Not exactly the

kind of

> reaction I was hoping for. She does go off and do fun things when

we're at

> the hospital for IVIG or anything else, but it's not with me and it's

> personal time with me that she craves! There's only so much of me to go

> around and the illnesses and other problems get first priority. I

try to

> take her out and do special stuff on occasion and it helps that

she's the

> oldest so I can let her stay up later, etc.

>

>

>

>

>

> Mom to , 7 unaffected

>

> , 4 GSD, hypogam, pneumococcal AD

>

> Meredith, 2 GSD, ?PI

>

> Huntsville, AL

>

>

>

> New and so glad to have found this group!

>

>

>

> Hi, ,

> Im sorry things are tough right now. I have 3 kids with PID, all of

> them on IVIG, and one ten yr old daughter who has asthma/allergies but

> otherwise in pretty good health. I am currently struggling, much as

> you describe, and the other 3 kids are pretty high need, and I feel

> like Olivia(the ten yr old), is getting inadvertantly punished for

> being a healthy, " good " kid. She is a good girl, helpful, responsible,

> and an excellent student.......and she gets the least attention, etc.

> Im working on this, but.....its just like there isnt enough ME to go

> around. Im sure you understand the feeling. I try...but gosh. I can

> only do so much. My 9 yr old is really having a difficult time right

> now, dealing with her illnesses, etc.......and struggling with panic

> attacks, phobias, separation anxiey, and generally is either screaming

> like a banshee or laying despondantly on the couch--not eating much,

> not doing anything(unless she is screaming:). So that has been taking

> up a lot of time/attention, but what can I do? I've been trying to

> delegate......my kids DO go to school, so Im trying to utilize

> that....do you belong to a homeschool group, or anything where your 7

> yr old might get to do something special? Ive asked some school staff

> to enlist Olivia to be a helper---telling her they need someone

> responsible, helpful to do a job...something to make her feel like it

> IS worth it to not be sick and cranky all the time--bc in her eyes,

> being sick EARNS the other kids extra time with me.......she is quite

> jealous over IVIG day, or days at the hospital, bc she feels like the

> other kids are getting my attention and she is getting left out.

>

> Welcome to the group!!

>

> valarie

>

>

>

>

>

>

[Guest guest]

Ive said it before---but some days I think I need a wife. someone else

to help me do all the things I do!!

HAHA! :-) At least I'm getting a housekeeper starting this week. Yea!!

Mom to , 7 unaffected

, 4 GSD, hypogam, pneumococcal AD

Meredith, 2 GSD, ?PI

Huntsville, AL

New and so glad to have found this group!

>

>

>

> Hi, ,

> Im sorry things are tough right now. I have 3 kids with PID, all of

> them on IVIG, and one ten yr old daughter who has asthma/allergies but

> otherwise in pretty good health. I am currently struggling, much as

> you describe, and the other 3 kids are pretty high need, and I feel

> like Olivia(the ten yr old), is getting inadvertantly punished for

> being a healthy, " good " kid. She is a good girl, helpful, responsible,

> and an excellent student.......and she gets the least attention, etc.

> Im working on this, but.....its just like there isnt enough ME to go

> around. Im sure you understand the feeling. I try...but gosh. I can

> only do so much. My 9 yr old is really having a difficult time right

> now, dealing with her illnesses, etc.......and struggling with panic

> attacks, phobias, separation anxiey, and generally is either screaming

> like a banshee or laying despondantly on the couch--not eating much,

> not doing anything(unless she is screaming:). So that has been taking

> up a lot of time/attention, but what can I do? I've been trying to

> delegate......my kids DO go to school, so Im trying to utilize

> that....do you belong to a homeschool group, or anything where your 7

> yr old might get to do something special? Ive asked some school staff

> to enlist Olivia to be a helper---telling her they need someone

> responsible, helpful to do a job...something to make her feel like it

> IS worth it to not be sick and cranky all the time--bc in her eyes,

> being sick EARNS the other kids extra time with me.......she is quite

> jealous over IVIG day, or days at the hospital, bc she feels like the

> other kids are getting my attention and she is getting left out.

>

> Welcome to the group!!

>

> valarie

>

>

>

>

>

>