haven't posted in a LONG time

January 6, 2008

Welcome Back . I have heard so many people say thank god it is 2008. I am trying to be more positive that 2008 will be kinder to everyone.

N.H.Start the year off right. Easy ways to stay in shape in the new year.

January 8, 2008

Hi - good job getting going on something while the girls train for track. How's it going?

I printed my training schedule (LOL) for May's 12K.... it's an 8 week training program, but I wanted it printed so I could look it over.... my goal is to be able to "jog" part of it this year compared to walking it the past 2 years.

in WAStart the year off right. Easy ways to stay in shape in the new year.

November 14, 2009

hey all. i have been inactive for quite some time - had band done just over six

years ago by Rumbaut. anyway, i have had some pain just under my left ribcage

and am concerned. i used the carpet cleaner yesterday for the first time in

almost two years so maybe that is it???

November 15, 2009

I agree it is most likely a pulled muscle.

However, i'll also take this chance to remind you that we all need a yearly eval

and fluoro to check the band. We'll need this for life. There are lots of

possible problems with the band after a few years, and we need to be very

vigilant.Those of us with the old - stlye 9.75, 10.0, 11 cm, and VG bands are at

a bit higher risk than those with the new AP bands from inamed.

Many are having slips and erosions, and dilations - if we are not pretty

religious about self-limiting to 1-1.5 cups of food. after a time, the esophagus

is so used to the band pressure, it no loonger sends the soft stop signs, and we

can easily overeat and end up with a dilated pouch or esophagus. some of tese

require band removal.

Be sure to be checked out regularly, and do stay in touch with us if you like.

The pahse of " at goal or no longer losing " is just anher phase of our band

journey, with it's own needs and safety requirements. We are never " home free " .

Sandy r

>

> hey all. i have been inactive for quite some time - had band done just over

six years ago by Rumbaut. anyway, i have had some pain just under my left

ribcage and am concerned. i used the carpet cleaner yesterday for the first

time in almost two years so maybe that is it???

>

November 18, 2009

thanks to everyone who responded. the pain subsided the next day. whew! i had

everything checked about a year ago. thanks for the reminder to do it yearly

though.

>

> hey all. i have been inactive for quite some time - had band done just over

six years ago by Rumbaut. anyway, i have had some pain just under my left

ribcage and am concerned. i used the carpet cleaner yesterday for the first

time in almost two years so maybe that is it???

>

May 13, 2010

You may be referring to Dale. I believe she retired from the group.

I'm also an old timer. My daughter, now 8, had horrible GI issues. (Its common

w/ immune irregularities and muscular conditions including mito).

We landed at Cinci w/ Dr. Putnam. (After seeing a few GI specialist

disappointments). She is on miralax indefinitely. There no diet that will

correct my kiddo's slow gut. (I'm an RD).

We homeschool to limit antibiotics, push fluids, balanced diet and exercise when

possible. We have chronc joint pain so it's tough. Classic cvid.

She has low IgA (not deficient)--among other things.

Dani's mom

Sent from my Sprint® BlackBerry

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

Re: Haven't Posted in A Long Time

Ursula, who was the lady who was always on the board with you 7 or 8 yrs ago? I

think she had a daughter ? who was going to college? Is she still on? I

vaguely remember her daughter had the stomach issues? Am I remembering

correctly about that? Do you know who I mean?

, Mom to , 10, selective IgA

May 14, 2010

, make sure she has been checked for H Pylori, Makenzie has GI issues as

well, when she was younger, she complained all the time of her stomach hurting,

the GI Dr down here in Akron missed it, by saying put her on the potty more and

give her more fiber, like duh we were already doing that!! but anyway, Our Pulmo

sent us to a GI Dr at the Cleveland Clinic and right away they figured out she

had it!! It was highly treatable but highly dangerous left untreated!!! So just

something to look at, that is if you havent. As for her not taking her meds,

not sure because Makenzie is almost 10 as well and she has always taken them no

matter what it was (and there has been ALOT lol) she knows it is not an option

and just does it, so I have never had to fight it, we have been lucky!!! I say

either you tell her this is not an option and take things away that she loves

until she complys, or bribe her lol......either one should work in the

end...well I

think....lol good luck and let us know how she is doing!!

Makenzie 9 CVID, Asthma, Reflux, GI Issues, Allergies,

20

May 15, 2010

Hello, I can FULLY understand what you are going through with your daughter

regarding refusing her meds. We have struggled with our son who is now 14 from

infancy regarding his illness and meds. We had a diagnosis of Bipolar but I

personally do not feel that he is Bipolar but is ADD and Stress and traumatized

by his illness. All of our kids have gone through LOTS but each of them handle

it differently. My son became VERY anxious, suicidal and felt there was NO

reason to live. It was frightening but at the same time made ME very frustrated

and yes angry when he gained the title of ODD Oppositional Defiant Disorder. He

began refusing his infusions and would not take ANY of his meds at about 10. And

I could say all I wanted and take things away etc but it only made him stronger

in refusing to the point of trying to kill himself. If I could look back and

start again I would have REALLY worked with him specifically in counseling

regarding Post Traumatic

issues. It finally came out that he felt that my poking him meant that I did

not care about him and he felt that I should be holding and hugging on him

rather than poking him.(sounds simple huh) I was surprised but also felt that I

was VERY glad he could verbalize it. He also felt that because I made him take

meds all the time that I was not interested in him except to make sure that he

took his meds. Again guilty as charged I was so concerned about him and wanted

to make sure that I did things correctly that I was (RN) first and did not do

enough play and fun with him. ( also did not have time left over with all the

appointments and working fully time. So when I got him it was

meds,treatments,school and going over schedules rather than playing with him or

spending time talking about his life. I did the

best I could but needed to change my focus a bit. It has been a long haul but

now at 14 we are doing very well. In our case I took him out of school and began

homeschooling him and that also helped tremendously. Oh he also did not want to

deal with is illness emotionally he was angry and he did not know any other kids

with CVID. I took him to conferences with IDF and that also helped a great deal.

Each of our kids responds differently so I was urge you to dive in and make it

about her in a new way with counseling so that she can begin to deal with what

is going on in her life and take personal responsibility for her illness. It

will take time but you both need to be on the same team or it is going to get

worse as she becomes a teenager. Remember that her behaviors are age appropriate

( beginning to look for autonomy) but her illness is getting in the way. We

found helping him acknowledge it and to take responsibility made a great place

to start on the

road of maturing into it being a part of his life rather than fighting it and

feeling there is NO hope. Feel free to contract me off list if you just want to

talk.

BARBIE

________________________________

From: ercokat <ercokat@...>

Sent: Thu, May 13, 2010 6:41:44 PM

Subject: Re: Haven't Posted in A Long Time

We have used Miralax, and now fiber gummies for the past few months. Now she is

putting her on prilosec, which we haven't started yet, and she wants me to

" clean out her colon " by using basically the same medications they use the day

before a colonoscopy. I'm not sure I want to do that to her. I asked to see a

Pediatric Gastroenterologist, and while I don't need a referral for our

insurance, the only Pediatric doctor of this sort is an hour away, and won't

make us an appt. without a referral from another doctor. I live in a fairly

large area, and cannot believe that there isn't a pediatric gastro around here.

It's unbelievable. But, then again, there isn't one dermatologist in town that

will take insurance, so this is just a weird area.

Our doctor is also going to have an ultrasound done, just to rule out other

reasons why she is having pain. Right now I am really angry with my daughter,

because at 10 she has decided that she doesn't need the medications, and is

refusing to take them. Short of holding her down and pouring it down her

throat, I am at a loss. We have had too much medications in her life, and she

is tired of it. She is completely convinced that she doesn't need it, because

her stomach hasn't hurt for 2 whole days; ugh! She didn't have these problems

when she was younger, but I swear she ate more fiber back then. Now I can

barely get her to eat any.

>

> Macey had problems with pain and constipation for several years (2-6 years

old). She was on Lactulose, Senokot, Miralax, Mag Citrate and had a ostomy

implanted in her colon to wash out the stool impacted. This resolved later and

now she has the opposite problem. She has had periods of low IgA but isn't

consistently low. The constipation you speak of is it that she doesn't go often

or that it is difficult for her to go? What treatments has the pediatrician

tried so far?

> Ursula

> Mom to (17) and Macey (14)

> Macey's Caringbridge site

>

> Macey's Blog

>

> ________________________________

> From: ercokat <ercokat@...>

>

> Sent: Tue, May 11, 2010 11:40:07 AM

> Subject: Haven't Posted in A Long Time

>

> I joined this board when my daughter was diagnosed with Selective IgA

Deficiency at the age of 20 months, and she is now 10! Thankfully after the

first 5 yrs after diagnosis, she stopped getting the constant ear and sinus

infections. The amount of antibiotics she had her first 7 yrs is just

unbelievable. For many years I have heard through this board and other

resources that many kids with IgA Def end up with stomach issues. Well, I think

my daughter has developed some now. We have been to the doctor so many times

with pain, constipation, etc. Today I finally insisted on a referral to a

pediatric gastroenterologist. If anyone has any similar situations you can

share with me, I'd love to hear from you!

>

> , Mom to , 10, Selective IgA Deficiency, Asthma, Allergies, and now

stomach issues

>

May 15, 2010

Yes, DALE! I remember her posts well (I just couldn't remember her name). I

hope her daughter is doing well as an adult.

When I mention to the pediatrician that her stomach issues may be due to her IgA

Deficiency, she just kind of nods, but like everyone who isn't an immunologist,

she doesn't really know about it. When we lived in the Atlanta area we had a

real immunologist (Macey's Mom actually helped us find her!), but

>

> You may be referring to Dale. I believe she retired from the group.

>

May 15, 2010

I would NOT take the Mineral oil at all. It is DISGUSTING and I could not get it

down as a kid and that time we also were given castor oil. I still have HORRIBLE

memories and do not like oils in anything. Mag citrate is OK if taken with a

straw on ice. It is sour and salty. You can also add it to lemonade powder or

possibly another flavor that she will take( Crystal lite) but be careful not to

make too much volume so that she can get it down. Did you have an xray to show

that she if full? Both of my kids have had problems so have been through LOTS Of

laxatives and also Golytely in the hospital with a tube down the nose and IVs. I

personally was never willing to do enemas for my kids since I felt it was not my

place even though I am a pediatric nurse. Give her as much control as possible

with taking her meds with when and how. BARBIE

________________________________

From: ercokat <ercokat@...>

Sent: Sat, May 15, 2010 6:29:22 PM

Subject: Re: Haven't Posted in A Long Time

My Aunt has H Pylori. I myself have acid reflux disease and IBS, but I have

been checked for H Pylori and luckily don't have it. I've heard it run in

families, so if my Aunt has it could, too. Can they only test for that

with an endoscopy, or is it tested through the blood as well?

has always been good with her inhaler, but horrible taking cough meds and

liquid for allergies and such. We had to get chewable antihistamine pills,

which weren't as bad. She did just take Prilosec for the first time tonight,

but it doesn't have any taste, and she swallowed it fine.

The doctor wants me to use magnesium citrate, and mineral oil to " clean out her

colon " . I know this is going to be miserable for her, and don't really want to

do it. I am going to try the miralax treatments first, along with the prevacid.

She also has some anti-cramping meds the PA gave her. Not sure if they work or

not, but we will try!

>

> , make sure she has been checked for H Pylori,

May 15, 2010

I would get her into some counseling. She does not understand what happened

earlier in her life but it has a impact on her she is now and she may be having

anxiety and possibly anger about going back there and cannot understand or

verbalize it. You also may be having the same anxiety but do not realize it and

it will come out in how you respond to her. It is very subtle. It is not easy

still with my son but.... MUCH better and I finally feel that he will actually

grow up.

BARBIE

________________________________

From: ercokat <ercokat@...>

Sent: Sat, May 15, 2010 6:05:09 PM

Subject: Re: Haven't Posted in A Long Time

Barbie, you have gone through a lot with your son! Congratulations for getting

through so much of it. My daughter was very sick from age 2 to about 6 or 7,

but for the past 3 or 4 years it didn't seem like she had anything chronic at

all. Even her asthma has been a non-issue, except for flare ups when she has a

respiratory infection, but even that has been minor. We have been so lucky.

Now it's like " it's baaaack " . Sigh. She has not realized that she has any

illness, except for the asthma, and now suddendly at the end of 4th grade, when

everyone is looking at each other and comparing, she starts having issues. She

has decided that she has nothing wrong with her, except when she is in the

bathroom crying and saying " please help me, Mom " .

May 16, 2010

, it can be tested thru a breath test, and it is simple, Makenzies was

found during a routine endoscopy, but then they treated her with three different

meds for 3 or 4 weeks (could have been longer it has been a while) and then

tested her breath, she breathed in a special bag, then drank some stuff that

just tasted like lemonade without the sugar, and they make you wait a bit and

breathe in another bag, they send it off and will call with results. Your Aunt

shouldnt still have it? It is highly treatable with the 3 med combo, but has to

be treated that way, with two different antibiotics and nexium, left untreated

it causes bleeding ulcers and can lead to stomach cancer. So I am hoping they

got rid of it in your Aunt, Kenzie was treated and is ok now, and my sis in law

was treated and is ok now. Good luck, and make sure you ask your GI Doc to run

it if it hasn't been done before, it is missed in alot of patients!!!

Makenzie 9

20

May 17, 2010

I am glad you posted. My son (age 8) has asthma, recurrent croup, and selective

IGA def. About 2 years ago (age 6) he started pooping in his pants (alot) and

complaining of stomach aches. I mentioned it at his check up and the only the

the ped said is " I gaurantee you he knows he has to go and there was no reason

for it " So, we rock on with these accidents happening, I even got so frustrated

I would yell at him for doing it. Thinking he knows he has to go and just will

not go.

It would come and go and would get worse when he got stressed. So after about

9 months I took him to a pychologist to see if it was emotional. She was

useless. Then back to the a different ped in the same group. He felt his tummy

and knew right away he was impacted, ex-rayed to make sure. He put him or

miralax then we switched to kristolose. We kept him on it for about 6 months

and he has been much better. We may start back soon as I have noticed some

small accidents and an increase in tummy aches lately.

As far as cleaning out the colon. I had a colonosopy last summer and the doc

had me take a laxative tablet and drink a whole bottle of miralax in large

bottle of gaterade. It was not that bad and it worked. I think he said you

could mix it with crystal light as well.

I hope it all works out for you!