update

[Guest guest]

> Marta...sorry to hear the dinner offer is off I'd be a really

cheap

> date...lol.

, Jamison and I could eat in front of you the way Jo and Tom

ate in front of Mel. Then I could have you throw it back in my face

the way Mel does to Jo, lol.

Marta

[Guest guest]

________________________________________

> Ok Marta,

> We tease back and forth about Jo and Tom eating in front of

me....LOL.

> She started it, so I hope I'm not throwing it in her face....Am I?

========================

Dabbing the tears from the corner of my eyes....Ok, I'm done

chopping that onion...Now I'm scratching my head wondering when I

was insulted...Oh, well...Hey Mel I'll eat in front of you any day.

Hugs

JO

[Guest guest]

________________________________________

> Ok Marta,

> We tease back and forth about Jo and Tom eating in front of

me....LOL.

> She started it, so I hope I'm not throwing it in her face....Am I?

========================

Dabbing the tears from the corner of my eyes....Ok, I'm done

chopping that onion...Now I'm scratching my head wondering when I

was insulted...Oh, well...Hey Mel I'll eat in front of you any day.

Hugs

JO

[Guest guest]

Hi !

It's so good to hear from you! So sorry to hear you're having such

a rough time of it, though! Please keep us updated on your

situation. We care.

Hugs!

Tracey

> Hey all I am still kicking(and screaming) things are o.k. I

finially

> got my feeding tube out on thursday and had 2 wonderful days of

> freedom...lol by saturday I was back at the hospital and on monday

I

> under went yet another surgery..I was scared to death but came

> through it. So now its saturday I came home yesterday and feel

like a

> truck hit me. My NEW feeding tube is in the intestines this time

and

> as they say...Life goes on. Got to run..love to all........

> in woodlake

[Guest guest]

congrats on your wt loss and feeling better take care amber

Update

Hi everyone,

I haven't posted in some time.

Just went in today to be weighed. Surgery January 12th, down 82 lbs.,

18 mort to reach 100lbs and 58 more to reach goal weight.

Unbelievable how great this surgery is. Thanks to God for a new lease

on life. It is incredible.

High blood pressure - GONE!!, Sleep Apnea - GONE!!, leg pain -

GONE!!, Restless leg syndrome - GONE!!, almost 20 years of allergy

meds - GONE!!. Energy level way up. What can I say. It is a miracle

surgery.

Good luck to those who are just getting started. It is not easy at

first but gets better every day.

K.

[Guest guest]

> Hi everyone,

>

> I haven't posted in some time.

>

> Just went in today to be weighed. Surgery January 12th, down 82

lbs.,

> 18 mort to reach 100lbs and 58 more to reach goal weight.

> Unbelievable how great this surgery is. Thanks to God for a new

lease

> on life. It is incredible.

>

> High blood pressure - GONE!!, Sleep Apnea - GONE!!, leg pain -

> GONE!!, Restless leg syndrome - GONE!!, almost 20 years of allergy

> meds - GONE!!. Energy level way up. What can I say. It is a

miracle

> surgery.

>

> Good luck to those who are just getting started. It is not easy at

> first but gets better every day.

>

>

> K.

~~~~~~~~~~~~~~`

WAY TO GO JOHN!!!!!!!!

Keep being the looser we all know you are isn't it great to be a

looser this way????

God bless

Pat

[Guest guest]

In a message dated 3/27/2004 4:18:46 PM Pacific Standard Time,

silentfox00@... writes:

> I am tired I am bored but this too will

> pass and hopefully I'll enjoy good health from here on out...

> in woodlake

Great attitude, my girl! I'm so glad you are so upbeat!

Hugs and blessings,

Ann

[Guest guest]

....wow! You sure as heck can't complain about being a slow

loser! It's nice to know your feeling great. Gosh won't even

recognize you.

Jo

[Guest guest]

....wow! You sure as heck can't complain about being a slow

loser! It's nice to know your feeling great. Gosh won't even

recognize you.

Jo

[Guest guest]

Congrats on your progress ! I went in 1 month after you...(Feb.

11th) and doing well also. Glad to hear all of your good news! Deb:-)

> Hi everyone,

>

> I haven't posted in some time.

>

> Just went in today to be weighed. Surgery January 12th, down 82

lbs.,

gets better every day.

>

>

> K.

[Guest guest]

Congrats on your progress ! I went in 1 month after you...(Feb.

11th) and doing well also. Glad to hear all of your good news! Deb:-)

> Hi everyone,

>

> I haven't posted in some time.

>

> Just went in today to be weighed. Surgery January 12th, down 82

lbs.,

gets better every day.

>

>

> K.

[Guest guest]

>

> > Hi everyone,

> >

> > I haven't posted in some time.

> >

> > Just went in today to be weighed. Surgery January 12th, down 82

> lbs.,

> gets better every day.

> >

> >

> > K.

~~~~~~~~~~~~~~~~~~

WooooHoooo kudo's for you !!!!!

It only gets better and better

God bless

Pat

[Guest guest]

>

> > Hi everyone,

> >

> > I haven't posted in some time.

> >

> > Just went in today to be weighed. Surgery January 12th, down 82

> lbs.,

> gets better every day.

> >

> >

> > K.

~~~~~~~~~~~~~~~~~~

WooooHoooo kudo's for you !!!!!

It only gets better and better

God bless

Pat

[Guest guest]

Whoo hoo ! How inspiring! I'm so happy for you!

Tracey

> Hi everyone,

>

> I haven't posted in some time.

>

> Just went in today to be weighed. Surgery January 12th, down 82

lbs.,

> 18 mort to reach 100lbs and 58 more to reach goal weight.

> Unbelievable how great this surgery is. Thanks to God for a new

lease

> on life. It is incredible.

>

> High blood pressure - GONE!!, Sleep Apnea - GONE!!, leg pain -

> GONE!!, Restless leg syndrome - GONE!!, almost 20 years of allergy

> meds - GONE!!. Energy level way up. What can I say. It is a

miracle

> surgery.

>

> Good luck to those who are just getting started. It is not easy at

> first but gets better every day.

>

>

> K.

[Guest guest]

In a message dated 4/29/2004 12:27:40 PM Eastern Daylight Time,

scoleman@... writes:

Apparently, there is a

new blood test and genetic test for IgA deficient patients so that

we won't have to do the endoscopy right away. We will know next

week what the results are.

Well thats good. Much easier for the both of you. Let us know the results.

Janet, mom to Brittany CVID

[Guest guest]

In a message dated 4/29/2004 1:23:36 PM Eastern Daylight Time, dale@...

writes:

but they need to check the IgG subclasses

and response to vaccinations just to be sure nothing else is going on.

Dale,

Brittany had pneumonia vaccine, we are waiting the results. Should he check

the response of anything else?

Janet, mom to Brittany CVID

[Guest guest]

Did the GI mention anything about testing him for bacterial overgrowth?

Ursula

>

> From: " lamadre2003 " <scoleman@...>

> Date: 2004/04/29 Thu PM 12:24:41 EDT

>

> Subject: Update

>

> We went to the University fo Chicago yesterday to met with GI

> doc. we are testing him for celiac disease. Apparently, there is a

> new blood test and genetic test for IgA deficient patients so that

> we won't have to do the endoscopy right away. We will know next

> week what the results are.

>

> We are going back to the new immuno next week as well and

> is having his adenoids taken out on may 24, just beofre his

> 3rd birthday. I'm moving the party forward one week.

>

> Anyhoo, that's about it. Question;

>

> If he does not have celiac, and he is on maintenance antis, is

> there anything I can do about the constant diarrhea? Poor guy, I'l

> never get him potty trained at this rate!

>

> , mom to , Complete IgA and asthma

>

>

>

> 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]

from Dale, Mom to Katy, CVID, age 19

, PID kids often have terrible gut problems. But the good news is

that many patients can get a handle on what is causing the problems and

find a place that works for them. Many, many of the kids on this list

have a lactose intolerance, some wheat, some have lots of food

allergies. It will take a while, but you'll get it figured out. But,

it may take an endoscope to get all the answers.

One thing that brought Katy's under control was the complete (and I mean

very complete) elimination of lactose for about 4 years. That and the

IVIG finally got her healed to the point that now she can have limited

intake of milk products -- just not large doses. When she was so bad

with diarrhea, it was really hard to pinpoint what was causing it. We

eliminated practically EVERYTHING! But, we finally turned the corner!

Yeah. Now she eats just about anything including pizza and grilled

cheese sandwiches but she's very careful about what she puts in (doesn't

matter to her about calories or nutrition -- just whether it's loaded

with germs or fairly sanitary! In other words -- to her, it would be

better for her to eat a candy bar right out of a fresh wrapper than to

eat from a salad bar that has been sitting out for a while.)

Let me just share with you some random notes that I took on GI disorders

at an IDF conference and see if any of those help you out. These are

notes taken down very quickly from a Gastroenterologist who didn't make

his slides available -- so I was scribbling like crazy. PLEASE forgive

the spelling.

NOTES from Baltimore June 2003

In a person with a normal immune system, the intestine must discriminate

wisely what is a germ versus what is for food. The gut is essentially

" outside " the body and encounters LOTS of germs and dirt everyday very

similar to the sinuses or eyes.

IgA is the primary fighter for the immune system in the gut. IgG is

mostly destroyed by enzymes and is not effective.

There are constant assaults by bacteria, viruses, fungus and parasites

on our food. But there are also more bacteria in your gut than there

are cells in your body!

The only way that our body would ever get food is to " learn " what is to

be tolerated and what is not because everything that comes into the gut

is " foreign " . No one knows how this process takes place but we see it

happening as we introduce new foods to our babies and they gradually get

to where they don't spit it back up. So, the gut trains itself to

tolerate food.

The way IgA works is that it attaches to the germ and then passes

through the intestinal tract without incident. Without a healthy

supply of IgA, the germ causes the immune system to attack inside the

gut -- harming healthy gut tissue.

In CVID, 60% have chronic diarrhea, 40% have some level of

malabsorption, 10% have splenomegaly, and 2% have Irritable Bowel

Disease including ulcerative colitis or Chrohns.

NOTE: GI severity DOES NOT equal level of severity of PID. You could

have a very minor PID with major GUT problems, or a very depleted immune

system that does okay with gut issues.

CVID is the most common PID to have GI problems

IgA deficient patients are apparently sometimes protected by IgM.

Chronic Granulomatous Disease is the most common for Irritable Bowel Disease

Brutons is most common for chronic viral infections

SCID is most common for malabsorptive diarrhea

Lack of communication with the t-cells cases inflammation, because there

is no differentiation between " germs " and healthy tissue. And the

immune system begins attacking it's own gut.

This leads to:

diarrhea

abdominal cramping

bloating - distention

gas

bleeding (rare)

abscess (peri-anal)

fatigue (anemia)

The fact that PID patients have to take more antibiotics than usual also

contributes to the problem.

Clostridium difficile - bacterial overgrowth.

Most of the infections associated with PID are not your rare uncommon

infections -- it is the very, very common ones. In fact, salmonella and

shigella show up in PID at the same rate as the normal population.

Giardia lamblia is the MOST common protozoa (treated with flagyl or

metrozinole (sp).

In bacterial overgrowth, peristalsis is reduced.

A fecal fat study shows that fat malabsorption is first.

A, D, E, and K vitamin deficiency usually follow if there is fat

malabsorption (must replace these vitamins in a water soluable form)

treatment - more antibiotics (Cipro, tetra, penicillin)

Then there's the whole range of GI problems that comes from autoimmune

inflammatory disease:

That's the end of my notes. Wish they were more complete, but my hand

was falling off.

Another thing that helped Katy was that now when she has a bout of

diarrhea, she takes a dose of acidolphilos. But you need to go over

that with your GI doctor thoroughly. It just seems to help her regulate

her gut faster after each episode. Just because it's over the counter

doesn't mean it's safe for little ones -- and I have no idea whether it

can be used at such an early age.

Hang in there -- he will potty train!. A lady once told me -- " he will

potty train before he leaves for college! I promise. " I got tickled

and it helped take the pressure off! Finding a solution to the

diarrhea is the first step and you are on the right track by working

with both an immunologist and a GI person -- potty training will come

once you figure out a system that works for you. I really see no need

of frustrating him if he's having the explosive diarrhea that Katy had.

She soiled so many clothes and she was 11-13!

Also, did your immunologist check IgG subclasses to make sure there

wasn't anything in addition to IgA deficiency? Some doctors stop when

they find the IgA deficiency, but they need to check the IgG subclasses

and response to vaccinations just to be sure nothing else is going on.

Hope that helps.

In His service,

Dale

lamadre2003 wrote:

>We went to the University fo Chicago yesterday to met with GI

>doc. we are testing him for celiac disease. Apparently, there is a

>new blood test and genetic test for IgA deficient patients so that

>we won't have to do the endoscopy right away. We will know next

>week what the results are.

>

>We are going back to the new immuno next week as well and

> is having his adenoids taken out on may 24, just beofre his

>3rd birthday. I'm moving the party forward one week.

>

>Anyhoo, that's about it. Question;

>

>If he does not have celiac, and he is on maintenance antis, is

>there anything I can do about the constant diarrhea? Poor guy, I'l

>never get him potty trained at this rate!

>

>, mom to , Complete IgA and asthma

>

>

>

>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]

from Dale, Mom to Katy, CVID, age 19

I know for Katy they checked tetanus and diptheria and pneumocox.

Checking IgG levels and subclass levels is great, but for some kids -

they have the good levels -- but they aren't protected -- which just

means the IgG doesn't work. So, by checking her response to various

vaccinations, they get a better picture of what's working and what's

not. Hope that helps,

In His service,

Dale

BBsmart2@... wrote:

> Dale,

>Brittany had pneumonia vaccine, we are waiting the results. Should he check

>the response of anything else?

>

>Janet, mom to Brittany CVID

>

>

>

>

[Guest guest]

Premed, start slow, hydrate and remember you're there to make her day

easier - not theirs. Will it be in a clinic, doctors office or hospital?

Ursula Holleman

and Macey's mom (9 yr. old with CVID, Diabetes Insipidus)

http://www..com

[Guest guest]

,

Good luck to !

Ursula already gave some great advice ... and about the hydrating -

they should try to really stay hydrated the day BEFORE.

Last time my daughter had IVIG - the day before was a really, really

hot day - and because they had a hard time starting the IV - they

speculated she was not well hydrated and encouraged her to really

drink a lot the day before ....

My daughter gets her IVIG in a Day Medicine infusion ward of a

children'e hospital. It is pretty much like an ER ward - except it is

nicer!!!

Take lots of deep breaths!!!

Sandy

Mom to Riley - antibody deficiency, asthma, IVIG, age 12

[Guest guest]

Hi Janet,

FWIW - my daughter's health really has improved significantly since

starting IVIG .... I feel like it's one HECK OF A WAY to feel better -

but at least it is an option.

I think these poor kiddo's can hardly help but BE depressed with

feeling crummy all the time.

Hang in there - maybe there is a light in the tunnel ....

Sandy

Mom to Riley (age 12, specific antibody deficiency, IVIG, asthma)

[Guest guest]

Poor girl! Please keep us posted!

Pam

wife to (17 years)

mother to , 10, Hannah, 8, Rebekah, 4, and Leah, 2

update

She is so depressed,

this is scarry:(

[Guest guest]

Our 3yo was expressing the desire to die. She had basically never been out

of bed like a normal child. Her every day life was pain/illness/yucky

feelings. She is substantially better with the higher dose of IVIG and an

anti-depressant added to her regime has helped a lot. I think her negative

thoughts were true reflections of how bad she felt all the time.

Pam

wife to (17 years)

mother to , 10, Hannah, 8, Rebekah, 4, and Leah, 2

Re: update

I think these poor kiddo's can hardly help but BE depressed with

feeling crummy all the time.

[Guest guest]

,

I can’t remember how old is – but here is what I did – Charlie

is 3 ½ , but was 3 years 3 months when he started.

1. I put almost an entire tube of EMLA on – better safe than sorry,

and I gave him nothing but water for the 24 hours prior (better veins,

easier to find).

2. I prepped him in advance that we were going and what it would be

like (I called ahead and got the info – would there be a TV? A VCR?

Games to play?

3. I requested Charlie get IV benadryl, not liquid (it will put him

to sleep, liquid does not).

4. I brought a digital camera, and took pictures of EVERYTHING,

especially the things he was most afraid of, I got them developed, the

same day, then wrote him a “book” of his experience, and decorated the

pages, had it laminated, and started reading it with him a few days

before his next IVIG – the things that are scary, are usually only scary

because they are unknown, and that takes the unknown away. KWIM?

5. Charlie has an IVIG bag, filled with videos, books, things that

he doesn’t see often, so that he can bring interesting stuff to IVIG,

and it keeps him occupied until he falls asleep!

6. If she is young, and just potty training – I don’t suggest

underwear, I’d suggest a pull up.

:-) Good luck.

Dayna

update

Hi all, First of all Welcome to all the new members you will find a font

of knowledge and loads of support with this group. Hi Amy, I saw your

name, I'm glad you joined. You will find a lot of people here have felt

lost and frustrated at some time. I will talk to you soon.

Well, we finally got the call and 's first IGIV is set for Wed

am. We are getting nervous, but happy she is finally getting a chance.

She is finally feeling better with this last infection getting under

control. Wish us luck, I'll let you know how it goes. Any words of

wisdom out there? What to expect etc? Thanks

Mom to IgA def, asthma, gerd