Winter is so hard!!!

January 19, 2011

Tristen's been having a rough winter! She seems to be getting sick every few

weeks with another sinus infection. I feel like I can't keep up with everything

anymore. Her dr. has asked me to start doing sinus rinses every night, and

fitting that into the regular routine has just sent me over the edge. She's

been complaining of stomach aches for almost a year now and we're trying to

figure out the cause. She's now on reflux meds and miralax for constipation.

She has an ultrasound yesterday and an xray of her abdomen. She's also going to

have an endoscopy in a month as well.

How do you keep up with everything? The schedule of when to do certain meds and

with food, an hour after food, 30 mins before food, day/night, every 4

hours....it's all just getting to be too much!

I'm wondering if she does have reflux or some other gi issues, or is it from all

the antibiotics she's been taking or all the post nasal drip.

Thanks for letting me vent. I'm sure it's not helping that I'm sick that I'm

feeling so frustrated.

le

January 19, 2011

Has she been checked for Celiac? That would be my guess.

________________________________

From: le Mina <daniellemina@...>

Sent: Wed, January 19, 2011 10:14:31 AM

Subject: Winter is so hard!!!

Tristen's been having a rough winter! She seems to be getting sick every few

weeks with another sinus infection. I feel like I can't keep up with everything

anymore. Her dr. has asked me to start doing sinus rinses every night, and

fitting that into the regular routine has just sent me over the edge. She's

been complaining of stomach aches for almost a year now and we're trying to

figure out the cause. She's now on reflux meds and miralax for constipation.

She has an ultrasound yesterday and an xray of her abdomen. She's also going to

have an endoscopy in a month as well.

How do you keep up with everything? The schedule of when to do certain meds and

with food, an hour after food, 30 mins before food, day/night, every 4

hours....it's all just getting to be too much!

I'm wondering if she does have reflux or some other gi issues, or is it from all

the antibiotics she's been taking or all the post nasal drip.

Thanks for letting me vent. I'm sure it's not helping that I'm sick that I'm

feeling so frustrated.

le

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

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

January 19, 2011

Is she on Gamma? Sound like my son BEFORE he was stable ? The issue you are

talking about go along with all the antibiotics and the lack of good bacteria in

the gut. I would add GOOD yogurt ( s or something that is without sugar and

in my opinion whole or low fat but not fat free) to her diet every day. We add

fresh or frozen fruit, Agave or maple syrup and whatever my kids want to add to

make it taste good. Chocolate syrup or chips if that is their bent) I know some

are using the Probiotics but some kids with immune deficiency may have problems

with them. BARBIE

________________________________

From: le Mina <daniellemina@...>

Sent: Wed, January 19, 2011 10:14:31 AM

Subject: Winter is so hard!!!

Tristen's been having a rough winter! She seems to be getting sick every few

weeks with another sinus infection. I feel like I can't keep up with everything

anymore. Her dr. has asked me to start doing sinus rinses every night, and

fitting that into the regular routine has just sent me over the edge. She's

been complaining of stomach aches for almost a year now and we're trying to

figure out the cause. She's now on reflux meds and miralax for constipation.

She has an ultrasound yesterday and an xray of her abdomen. She's also going to

have an endoscopy in a month as well.

How do you keep up with everything? The schedule of when to do certain meds and

with food, an hour after food, 30 mins before food, day/night, every 4

hours....it's all just getting to be too much!

I'm wondering if she does have reflux or some other gi issues, or is it from all

the antibiotics she's been taking or all the post nasal drip.

Thanks for letting me vent. I'm sure it's not helping that I'm sick that I'm

feeling so frustrated.

le

January 19, 2011

She has been tested for celiac, twice and both were negative. She is on 16ml of

vivaglobin weekly. She's also on prophylactic antibiotics to keep her from

getting sick although I'm starting ti think those are worthless at this point

and to stop them all together. I try to give her probiotics when I can fit it in

with all her other meds.

le

Sent from my iPod

On Jan 19, 2011, at 10:49 AM, <bluetaelon@...> wrote:

> Has she been checked for Celiac? That would be my guess.

>

> ________________________________

> From: le Mina <daniellemina@...>

>

> Sent: Wed, January 19, 2011 10:14:31 AM

> Subject: Winter is so hard!!!

>

> Tristen's been having a rough winter! She seems to be getting sick every few

> weeks with another sinus infection. I feel like I can't keep up with

everything

>

> anymore. Her dr. has asked me to start doing sinus rinses every night, and

> fitting that into the regular routine has just sent me over the edge. She's

> been complaining of stomach aches for almost a year now and we're trying to

> figure out the cause. She's now on reflux meds and miralax for constipation.

> She has an ultrasound yesterday and an xray of her abdomen. She's also going

to

>

> have an endoscopy in a month as well.

>

> How do you keep up with everything? The schedule of when to do certain meds

and

>

> with food, an hour after food, 30 mins before food, day/night, every 4

> hours....it's all just getting to be too much!

> I'm wondering if she does have reflux or some other gi issues, or is it from

all

>

> the antibiotics she's been taking or all the post nasal drip.

>

> Thanks for letting me vent. I'm sure it's not helping that I'm sick that I'm

> feeling so frustrated.

>

> le

>

> ------------------------------------

>

> 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

January 19, 2011

HMMMM...... I know the dosing with gammagard is different since it is a 10%

solution. I know my son was this way at about 12 but what we realized was that

he was going through puberty so some of the changes were from his body trying to

handle ALL of the changes. The nasal rinses DID make a huge difference. We use a

Groshen unit rather than a hand unit. It is about $100 and it is like a waterpik

but made specifically for nose rinses. My sons tummy has been much better but I

cannot tell you why except that we have been on the sub q for nearly 5 years

now. I hope that things get better for her. I know getting a handle on the tummy

issues is HUGE since I have a daughter who is NOT PID and is still having

trouble at 20. They have put her on Benefiber and Belladonna to settle the tummy

and it seems to be helping her for the first time in her life. I think they are

saying it is irritable bowel but whatever I am glad it is helping her tummy

aches and nausea. I know PID kids are different but the doctor says Benefiber is

more a peristalsis stablizer( cramping reducer) than a laxative since the stool

is more consistent shape and frequency and works better for some.

BARBIE

________________________________

From: le Mina <daniellemina@...>

" " < >

Sent: Wed, January 19, 2011 11:40:02 AM

Subject: Re: Winter is so hard!!!

She has been tested for celiac, twice and both were negative. She is on 16ml of

vivaglobin weekly. She's also on prophylactic antibiotics to keep her from

getting sick although I'm starting ti think those are worthless at this point

and to stop them all together. I try to give her probiotics when I can fit it in

with all her other meds.

le

Sent from my iPod

On Jan 19, 2011, at 10:49 AM, <bluetaelon@...> wrote:

> Has she been checked for Celiac? That would be my guess.

>

> ________________________________

> From: le Mina <daniellemina@...>

>

> Sent: Wed, January 19, 2011 10:14:31 AM

> Subject: Winter is so hard!!!

>

> Tristen's been having a rough winter! She seems to be getting sick every few

> weeks with another sinus infection. I feel like I can't keep up with

everything

>

> anymore. Her dr. has asked me to start doing sinus rinses every night, and

> fitting that into the regular routine has just sent me over the edge. She's

> been complaining of stomach aches for almost a year now and we're trying to

> figure out the cause. She's now on reflux meds and miralax for constipation.

> She has an ultrasound yesterday and an xray of her abdomen. She's also going

to

>

> have an endoscopy in a month as well.

>

> How do you keep up with everything? The schedule of when to do certain meds

and

>

> with food, an hour after food, 30 mins before food, day/night, every 4

> hours....it's all just getting to be too much!

> I'm wondering if she does have reflux or some other gi issues, or is it from

>all

>

> the antibiotics she's been taking or all the post nasal drip.

>

> Thanks for letting me vent. I'm sure it's not helping that I'm sick that I'm

> feeling so frustrated.

>

> le

>

> ------------------------------------

>

> 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

January 19, 2011

I wanted to also remind you that having chronic gut inflammation is a part of

having a PID. Many of the conferences we have attended over the years made it

VERY clear that chronic bombardment from bacteria and viruses in the gut with a

system that was not efficient at handling them causes chronic inflammation. The

Antibiotics just add to these problems. The only thing that stopped the problems

for my son was the gamma globulin but it too took several years to clear up. My

son also dealt with Eosinophilic gastroenteritis even as early as 3 months old.

It is basic an allergic manifestation of inflammation in the gut. My son had

chronic mucus and even bleeding for years but it finally is gone. I think it

takes time to get it back into sync.

H pylori is another issue that is hard to diagnose but is very common with out

kids. I think one thing that I heard someone talk about that I am not sure of is

using allergy shots to treat our kids. We were told that it would not work with

my son because his immune system is so dysregulated. I would maybe get a second

opinion on whether it is helpful. Has anyone else heard anything else? My son

has SEVERE allergies to many things but they also have gotten MUCH better since

his gamma has moderated things.

________________________________

From: osdbmom <osdbmom@...>

Sent: Wed, January 19, 2011 7:04:32 PM

Subject: Re: Winter is so hard!!!

hi....I just want to say that my daughter has had similar issues. I cant really

offer you a specific answer. When Savannah was young, she she had these chronic

stomach aches, all the time. Sometimes they would get so bad she would vomit, or

just lay in bed and cry. She had difficulty gaining and maintaining weight.

We tested for reflux and started meds. It took probably two years or so before

we found the right dose/type of med for that.

She had an endoscopy, bc she seemed like " classic " celiac. It was negative.

Starting IVIG helped a lot, but it took quite some time before we saw any

improvement with her. I mean like a couple of years. That was time spent dx'ing,

messing with meds, starting IVIG, getting a handle on asthma and reflux.

One thing I dont see in your post is allergry testing. Has she ever been tested

for food allergies? We saw some improvement with Savannah's stomach aches after

allergy testing and finding that she was allergic to dairy and egg. Cutting

those totally out of her diet helped her stomach aches a great deal. That might

be something you could ask about. Couldnt hurt.

It is overwhelming to be a parent of two young kids. Add medical problems and it

just seems more and more overwhelming. I would bet that every mom on this board

has felt this same overwhelming feeling you have. Something I did for a long

time was keep a list of each kids meds, times and doses and any other info I

needed on a giant corkboard in the kitchen, you could set it up for each day and

check off meds as you go.

Sinus rinses have helped my kids a great deal. My youngest wasnt able to handle

doing it until he got to be about 7. I wonder if she would do better with the

spray bottle instead of the netipot?

ps...I think I see you over on the asthma board?

valarie

mom to 3 w/cvid

>

> > Has she been checked for Celiac? That would be my guess.

> >

> > ________________________________

> > From: le Mina <daniellemina@...>

> >

> > Sent: Wed, January 19, 2011 10:14:31 AM

> > Subject: Winter is so hard!!!

> >

> > Tristen's been having a rough winter! She seems to be getting sick every few

> > weeks with another sinus infection. I feel like I can't keep up with

>everything

>

> >

> > anymore. Her dr. has asked me to start doing sinus rinses every night, and

> > fitting that into the regular routine has just sent me over the edge. She's

> > been complaining of stomach aches for almost a year now and we're trying to

> > figure out the cause. She's now on reflux meds and miralax for constipation.

> > She has an ultrasound yesterday and an xray of her abdomen. She's also going

>to

>

> >

> > have an endoscopy in a month as well.

> >

> > How do you keep up with everything? The schedule of when to do certain meds

>and

>

> >

> > with food, an hour after food, 30 mins before food, day/night, every 4

> > hours....it's all just getting to be too much!

> > I'm wondering if she does have reflux or some other gi issues, or is it from

>all

>

> >

> > the antibiotics she's been taking or all the post nasal drip.

> >

> > Thanks for letting me vent. I'm sure it's not helping that I'm sick that I'm

> > feeling so frustrated.

> >

> > le

> >

> > ------------------------------------

> >

> > 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

January 19, 2011

Tristen was allergy tested at 8 months, the dr's first thought allergies were

causing her URI's back then. She was positive to wheat, dairy, eggs

(anaphylactic) and peanuts. Since then we eliminated all the known allergens

and over the years she has outgrown all but peanuts.

She's been doing subq for 2 1/2 years now, and her dose was just upped from 13ml

per week to 16 ml per week. She's also on singulair, nasonex, zyrtec, flovent,

miralax, prevacid, and amoxacillian when she's not sick for prophylaxis. When

she is sick the antibiotic is rotated each time between all the different meds

at full dose.

We're on day 3 of trying the neti pot and it's not going so well. Sometimes

she's ok with it and other times she just cries and says it hurts. The dr has

been asking me to do them for a while but I've procrastinated so long on it

cause I wasn't sure she would cooperate with it. I'll keep trying and see if we

can get her to use it once she's healthy and her nose isn't so congested.

yes that's me that just joined the asthma board. Now that she has full blown

asthma I decided I need to learn a little more about it to keep it under

control.