Maddie

[Guest guest]

Donna,

Sorry to hear you are having such a hard time. Have you tried giving her

clear liquids for 24 hours and then putting her on the brat diet. You know,

bananas, rice, applesauce and toast. She could be having a lot of gas pains

too which would make her arch her back since she has diarrhea. Hope things

improve soon.

Marisa

[Guest guest]

donna, i take it from the emails i did get that maddie is not feeling her

best!!!! i hope she gets better and you take care of you too!!!!!!take care,

leah

ps for some reason i got no poston the 20th

[Guest guest]

In a message dated 5/22/00 2:46:38 AM Eastern Daylight Time, poggim@...

writes:

<< Donna,

Sorry to hear you are having such a hard time. Have you tried giving her

clear liquids for 24 hours and then putting her on the brat diet. You know,

bananas, rice, applesauce and toast. She could be having a lot of gas pains

too which would make her arch her back since she has diarrhea. Hope things

improve soon.

Marisa

>>

Thanks Marisa. She seems better today and hasn't had a bowel movement in

over 24 hours. You know, with our kids and their behaviors, you just don't

know what could be setting them off. I have been doing the BRAT all week and

thinning out her juices with spring water. She cried a lot yesterday too.

So at dinner, I gave her her usual beefaroni (that's her nightly dinner

now----she is SO SO ritualistic with eating) and she gobbled it up and seemed

genuinely happy. Who knows....she could have been so ticked that I wasn't

giving it to her. Hasn't been in school all week or SI, so her schedule is

off too. She also keeps poking me in the chest with her finger---kinda like

she is trying to tell me something. Funny, she's not doing this to anybody

else. I'm going to take her to school today and do everything the same and

see how she is. Thanks for all the well wishes guys!! Either way, I think

it's back to the gastro guy and maybe that endoscopy will have to be

done....UGH!!!!!!!!!!!!!!!!!!!!!!!!!!! I get the shakes just thinking about

it!!

Donna

[Guest guest]

In a message dated 5/22/00 8:34:24 AM Eastern Daylight Time, okieleah@...

writes:

<< donna, i take it from the emails i did get that maddie is not feeling her

best!!!! i hope she gets better and you take care of you too!!!!!!take care,

leah

ps for some reason i got no poston the 20th >>

Thanks Leah!!

Donna

[Guest guest]

donna, sooooooooo glad maddie is feeling better and back to her usual

beefaroni........... wish ashton would eat that stuff........i wouldnt have

to really cook....heehe

[Guest guest]

Hey Friends,

Well, I couldn't take Maddie to school. Got to the building and she threw

up her lunch. Not a stomach virus throw up.....if you've ever had a kid with

reflux, you'd recognize the difference too. So I called the gastro

guy---he's outta town til Friday. I'll keep you posted.

Donna

[Guest guest]

ohhhhh donna, i am so sorry maddie is still having troubles...... hope she

feels better.....as for the doctor they are always outta town when you really

need them.....hang in there........

[Guest guest]

Is it possible that she has compaction/impaction? I believe that often you

get diarrhea (sp?) like symptoms, and may have some small BM's, while there

is a larger stool obstruction in the bowels, and can also result in

vomiting. It can lead to an enlarged colon. 's had this before, not

serious, fortunately, that sound similar to what you're describing. It has

resolved itself though, within a couple of days, so we've never had to have

medical attention for it. If memory serves me, parents on the g-tube list

often give their children prune juice, extra fluids and fiber, which usually

takes care of things quickly. Would Maddie drink prune juice, or eat

prunes? Good luck!

Carole (mom to , 4, ds/g-tube/asd?)

Re: Maddie

> Hey Friends,

> Well, I couldn't take Maddie to school. Got to the building and she

threw

> up her lunch. Not a stomach virus throw up.....if you've ever had a kid

with

> reflux, you'd recognize the difference too. So I called the gastro

> guy---he's outta town til Friday. I'll keep you posted.

> Donna

>

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

> eGroups

> free, easy email groups

> Start a new email group today at

> 1/3949/10/_/691668/_/959020214/

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>

>

[Guest guest]

In a message dated 5/22/00 5:07:53 PM Eastern Daylight Time,

c-george@... writes:

<< Is it possible that she has compaction/impaction? I believe that often you

get diarrhea (sp?) like symptoms, and may have some small BM's, while there

is a larger stool obstruction in the bowels, and can also result in

vomiting. It can lead to an enlarged colon. 's had this before, not

serious, fortunately, that sound similar to what you're describing. It has

resolved itself though, within a couple of days, so we've never had to have

medical attention for it. If memory serves me, parents on the g-tube list

often give their children prune juice, extra fluids and fiber, which usually

takes care of things quickly. Would Maddie drink prune juice, or eat

prunes? Good luck! >>

Thanks Carole. Maddie is drinking plenty of fluids, but I'd never be able to

get her to drink prune juice. I'm pretty sure this is her reflux back in

full mode. However, I can't explain the liquidy bowel movements. She did

have one yesterday and same thing.....we had to put her in the tub

immediately. I'll talk to the gastro doc on Friday and hopefully, we'll come

up with a plan.

Donna

[Guest guest]

Donna,

How is Maddie doing? You reminded me of Brook years ago. He had reflux and

ended up having a Nissan fundoplication and g tube. We ran all the tests

etc.

But I was remembering just how miserable he was until we got things

under control with medication and surgery. He would cry and scream all day

long and then the self injurious behaviors started because he was in so much

pain. He settled down and was so much happier once he recovered from the

surgery. Hope you get things sorted out, let us know how it is going?

Marisa

[Guest guest]

In a message dated 5/29/00 8:34:16 PM Eastern Daylight Time, poggim@...

writes:

<< Donna,

How is Maddie doing? You reminded me of Brook years ago. He had reflux

and

ended up having a Nissan fundoplication and g tube. We ran all the tests

etc.

But I was remembering just how miserable he was until we got things

under control with medication and surgery. He would cry and scream all day

long and then the self injurious behaviors started because he was in so much

pain. He settled down and was so much happier once he recovered from the

surgery. Hope you get things sorted out, let us know how it is going?

Marisa

>>

Marisa,

Thanks for asking about us. Maddie is still refluxing pretty badly. Her

GI doc is out of town and had BETTER call me today. Her bowel movements have

been liquidy too, so something is going on. Her doc will probably do an

endoscopy (I opted out of doing another one before because she wasn't

refluxing) to see what is going on and I'm going to ask him to retest for

celiac. What else could the change in bowel movements be?

I will let you guys know what he says when I talk to him!! Thanks again!

Donna

[Guest guest]

In a message dated 5/30/00 7:37:23 AM Central Daylight Time, duffey48@...

writes:

<< Maddie is still refluxing pretty badly. >>

Donna,

I'm sorry to hear this. Has Maddie's behavior been affected? I imagine a

constant state of reflux would tend to make her ornery. Is she in school?

How are YOU coping? A huge box of virtual <<<<<<<chocolates>>>>>>> coming

your way! Hang in there,

Maureen

[Guest guest]

In a message dated 5/30/00 6:13:56 PM Eastern Daylight Time, MRASMUS@...

writes:

<< Donna,

I'm sorry to hear this. Has Maddie's behavior been affected? I imagine a

constant state of reflux would tend to make her ornery. Is she in school?

How are YOU coping? A huge box of virtual <<<<<<<chocolates>>>>>>> coming

your way! Hang in there,

Maureen

>>

Yes Maureen, it's affecting her behavior. This week has not been that bad

however as far as her behavior ....but I see a pattern. I remember how she

was before...she would cry and scream, but eventually just got used to the

reflux. I already see that's she's doing that. Poor baby is just making

due!~! But this time I am acting quickly (just thought it was *baby stuff*

before). Doc STILL hasn't called me and I am FLIPPING here!!! I'll be

harrassing them first thing in the A.M. Her bedroom and the TV room stinks

to the high heavens even though I've been scrubbing top to bottom (it's

probably places I wouldn't think to check).

Donna (who's SICK of changing sheets, scrubbing rugs and furniture)

[Guest guest]

donna i am send prayers you and maddies way hoping it works.....also crossing

every part of my body than can actually be crossed.///////lmao leh

[Guest guest]

Donna:

How wonderful! Isn't it amazing what our kids will do under some

circumstances?

[Guest guest]

Hi Becky,

You asked about losing a Grandparent. My parents died many years ago, but

while my son was small, we lived in a roommate situation with an older man.

grew to love him like a Grandfather, maybe even closer since we lived

in the same house. To make a long story short, Karl died from complications

of cancer very suddenly. said goodnight to him one night, and the next

morning he wasn't there. He talked about it all of the time.

So, finally, I realized he had unresolved feelings/questions regarding

Karl's death. So we had a heart to heart where I answered every single

question he had. I also purchased a wonderful book for him called THE NEXT

PLACE, written by Warren Hanson. Karl was an atheist, so I didn't think a

Christian book that I would normally buy would be appropriate. My son still

reads that book, with Karl in mind, and it seems to help immensely. By the

way, when we had our talk, he had a million questions, I think that's what

was bothering him.

May your family be comforted at this time.

Sandi--Mom to , age 8, suspected IgA def., chronic sinusitis, ear

infections and severe allergies. 9 surgeries.

[Guest guest]

Hi Becky,

You asked about losing a Grandparent. My parents died many years ago, but

while my son was small, we lived in a roommate situation with an older man.

grew to love him like a Grandfather, maybe even closer since we lived

in the same house. To make a long story short, Karl died from complications

of cancer very suddenly. said goodnight to him one night, and the next

morning he wasn't there. He talked about it all of the time.

So, finally, I realized he had unresolved feelings/questions regarding

Karl's death. So we had a heart to heart where I answered every single

question he had. I also purchased a wonderful book for him called THE NEXT

PLACE, written by Warren Hanson. Karl was an atheist, so I didn't think a

Christian book that I would normally buy would be appropriate. My son still

reads that book, with Karl in mind, and it seems to help immensely. By the

way, when we had our talk, he had a million questions, I think that's what

was bothering him.

May your family be comforted at this time.

Sandi--Mom to , age 8, suspected IgA def., chronic sinusitis, ear

infections and severe allergies. 9 surgeries.

[Guest guest]

My children just lost their beloved great-grandmother this summer. She had

multiple health problems and eventually succumbed to kidney failure.

Amazingly, she lived 42 days without dialysis! There are several good books

out there that help children deal with loss. We borrowed one from a

relative while we were visiting for the funeral, and I'm sorry, but I can't

remember the name. Autumn still talks about Grandma Bea, especially when

her day has been overwhelming. We have talked about how Grandma Bea lives

in heaven with God and Jesus and the angels and she understands that. She

also knows that Grandma was not healthy and now in Heaven, she has a new

body & is never in pain anymore. These explanations have helped us

tremendously. Have you considered starting a scrapbook or photo album of

the grandparent that Maddie could look at when she's feeling sad? Special

memories might help ease her grief somewhat.

As for your question about work: I work full-time. My employer is a

non-profit organization and is EXTREMELY flexible with my time away from

work. We have generous leave time policies and I can stop working at a

moment's notice (usually) and take Autumn to appointments, pick her up from

day care, etc. Plus, since I am an exempt employee, I can work at home to

make up the time away from work. It's helped a lot, especially since I

often spend nights checking on the children and doing breathing treatments,

etc. My supervisor let me install the company's software on my home

computer to take work home if needed. Next week, we'll have modem access to

our server and I'll be able to save directly to the network instead of

carrying diskettes back and forth.

Hope that answers some of your questions.

Ray, mother to Tabitha (age 6), Autumn, age 3 (IgG Def., asthma,

chronic sinusitis, and allergies), and Duncan Avery, 6 months

[Guest guest]

My children just lost their beloved great-grandmother this summer. She had

multiple health problems and eventually succumbed to kidney failure.

Amazingly, she lived 42 days without dialysis! There are several good books

out there that help children deal with loss. We borrowed one from a

relative while we were visiting for the funeral, and I'm sorry, but I can't

remember the name. Autumn still talks about Grandma Bea, especially when

her day has been overwhelming. We have talked about how Grandma Bea lives

in heaven with God and Jesus and the angels and she understands that. She

also knows that Grandma was not healthy and now in Heaven, she has a new

body & is never in pain anymore. These explanations have helped us

tremendously. Have you considered starting a scrapbook or photo album of

the grandparent that Maddie could look at when she's feeling sad? Special

memories might help ease her grief somewhat.

As for your question about work: I work full-time. My employer is a

non-profit organization and is EXTREMELY flexible with my time away from

work. We have generous leave time policies and I can stop working at a

moment's notice (usually) and take Autumn to appointments, pick her up from

day care, etc. Plus, since I am an exempt employee, I can work at home to

make up the time away from work. It's helped a lot, especially since I

often spend nights checking on the children and doing breathing treatments,

etc. My supervisor let me install the company's software on my home

computer to take work home if needed. Next week, we'll have modem access to

our server and I'll be able to save directly to the network instead of

carrying diskettes back and forth.

Hope that answers some of your questions.

Ray, mother to Tabitha (age 6), Autumn, age 3 (IgG Def., asthma,

chronic sinusitis, and allergies), and Duncan Avery, 6 months

[Guest guest]

It is normal for a child to talk about and be sad about a loss and actually

probably very good for Maddie that she can express herself. I know as a

parent I want to fix things for Lucas sometimes it is just better for me to

listen and acknowlege his feelings. I have often used paper and pencil for

him to draw what he is feeling. He has alot of angry outbursts and they have

decreased dramatically since I have started to listen to him rather than

trying to make it all better or control his behavior around his feelings.. He

is only 5 but is mature beyond his years. I learn so much from him when I

listen. If she continues for longer than you feel is normal see if you can

find a counselor that works with children with chronic health care needs. We

have had great success just having a place to vent and discuss things when we

feel overwhelmed about what is going on in our family . Sometimes the most

normal things are more difficult because our children do not live normal

lives. BARBIE Lucas dysgamm,hypogamm low IgM, IgA, etc.

[Guest guest]

It is normal for a child to talk about and be sad about a loss and actually

probably very good for Maddie that she can express herself. I know as a

parent I want to fix things for Lucas sometimes it is just better for me to

listen and acknowlege his feelings. I have often used paper and pencil for

him to draw what he is feeling. He has alot of angry outbursts and they have

decreased dramatically since I have started to listen to him rather than

trying to make it all better or control his behavior around his feelings.. He

is only 5 but is mature beyond his years. I learn so much from him when I

listen. If she continues for longer than you feel is normal see if you can

find a counselor that works with children with chronic health care needs. We

have had great success just having a place to vent and discuss things when we

feel overwhelmed about what is going on in our family . Sometimes the most

normal things are more difficult because our children do not live normal

lives. BARBIE Lucas dysgamm,hypogamm low IgM, IgA, etc.

[Guest guest]

Dear Becky,

I'm so sorry that you had a difficult time with the immunologist. Poor

Maddie, and I'm sure you feel just terrible and angry. I don't blame you.

I did want to add my two cents regarding the allergy testing. My son never

showed any signs of allergies, and I mean none at all. But his Ped (who is

almost never wrong) kept insisting that he was an allergy kid. Since I have

allergies, and he has chronic sinusitis, I thought it might be worth a try.

To my surprise, he tested in the 95th percentile. He had a huge (and

immediate) reaction to almost everything they tested him for. While he was

able to be on shots, they helped with his sinusitis. The problem has been

for about the last year, he hasn't been well enough to get the shots--they

only give them to a child if he or she is well. So that's not happening

right now--but I hope to resume them in the future.

However, there were some things that I definitely changed. We don't have

any pets at all. I would love to, but it would make everything worse for

Bri. Also, we actually moved from the country to the city. One of 's

worst reactions was to grass, and in the country we were surrounded by acres

of it. In the summer, it would just grow and grow and grow. I have seen

improvement in him since we moved. Also, because I know he is allergic to

trees, we are getting a " fake " tree today. I can say that knowing about his

allergies has been beneficial.

I hope you are able to still have a good holiday.

Sandi--Mom to , age 8. Suspected IgA def., chronic sinusitis, ear

infections and severe allergies. Nine surgeries--one pending.

[Guest guest]

Becky - has Maddie had an IgE level run? Macey's IgE is so low (17) they

basically have said that she doesn't produce

enough IgE (kindof the allergy Ig) to have allergies. Her dad on the other had

has a high IgE and gets 2 allergy shots

twice a week and is allergic to so much that they checked off what he's not

allergic to on the sheet since there were so

many he was.

Ursula Holleman

Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux,

Sensory Integration Disorder, Diabetes

Insipidus,colonic inertia)

http://maceyh.home.att.net

[Guest guest]

I got a rash when I had mono b/c I was on a penicillin antibiotic-- it was

HORRIBLE. The doctor thought that I had strep but did a mono spot *just in

case* he called me the next day and said, " STOP the antibiotic. In about 7

days you will have a rash " sure enough I had one. Not sure if this is the case

with your daughter. Has she been on antibiotics lately? The penicilling

reacts with the Epstein Barr virus that causes mono and makes this rash

*happen* (for lack of better words*

I got mono after my first year of college-- probably b/c I was run down. I

didn;t have a boyfriend, etc...I ran track.. I was SO sick for 3 months. The

doc wanted to put me in the hosp but I PROMISED not to do anything and take care

of myself. I had to get gammaglobulin shots... My liver was enlarged, etc..

It was SEVERAL months later that my mono titers went down. I had to have blood

tests eeryweeek.. when I went back for Fall semester I couldn;t train for track

(I was on scholarship) until my titers came back negative for mono. It was A

LONG time.... or at least it seemed like it.

Praying for Maddie!

pattie (mom to SDS/CVID ph SDS adn )

Maddie

So, yesterday morning-Wednesday-Maddie woke up with her cheek severely swollen

and bright red and very hot. I called her doctor and took her in at 3. She was

not running a fever and went to school and was fine-other than the cheek. He

had NO CLUE what it might be, gave us an antibiotic and sent us on our way.

This morning she woke up with her whole face swollen-including her lips-all of

it bright red-she made a great Valentine! By this afternoon it was all over her

arms as well. I called the doctor and he still had NO CLUE-but sent us to the

hospital for bloodwork. An hour later he calls and she has Mono. I have never

heard of mono causing this kind of rash. Of course I was not even home yet, so

dad did not ask the questions I would have. I am really in the dark about this.

I guess I am glad we do not have school tomorrow or Monday. How long do you

keep them out of school for something like this? Of course we were supposed to

go to the dentist tomorrow and it will now be another 3 months before we can

reschedule because I am sure he will not want her in the office. Ughhh!

goes to the immunologist on Wednesday-the same doc it took me 2 months

to get Maddie into. Who knows or understands this stuff?!

Any input regarding the mono would be very appreciated!

Hope everyone had a Great Valentines Day!

Becky in Indiana-mom to Maddie (5 almost 6) IgA def, cerebral palsy, sensory

integ. issues, asthma, reflux, constipation, high cholesterol......... and

(11)Get more from the Web. FREE MSN Explorer download :

http://explorer.msn.com

[Guest guest]

Sending healing thoughts and prayers your way. Mono is NO fun. I tell you-- it

was the SICKEST I have EVER been in my entire life. I was so tired that lifting

the remote for the TV was too hard. I literally slept on the sofa b/c I

couldn;t walk up the stairs to my room. SOmetimes I made it to my parents guest

room downstairs.

Keep us posted on how she is doing. Glad you had a good Valentine's day in

spite of it all. left a card under my pillow before he left town

yesterday. I have his card waiting for him when he returns tonight. He is a

pilot-- and when they were flying some weird light came on so they had to fly

the plane (Citation Ultra jet) to maintenance to be fixed.. makes me nervous.

They are down now.. and DRIVING back.

talk to you soon

Pattie

Pattie

Maddie

Wouldn't that be the easy answer about the rash! Unfortunately she had the

rash when we went to the doctor and I had just said to her teacher that

week-isn't it amazing that Maddie has not been on an antibiotic since October!

Upon doing a little research-the rash is a rare symptom-usually of people with

impaired immune systems-guess my doc was right on with his guesses today! She

looks terrible and things are starting to take over-she is exhausted and not

moving off the couch! We do not have school tomorrow or Monday-make up snow

days! Since no snow we get a vacation! So, shipped the oldest off to Grandmas

so she can still go to the dentist tomorrow and I am not out for both

appointments! Thanks for all of the prayers-we can use them right now! I truly

believe God works in his own way because while we were waiting at the hospital

our minister from Church just ran into us. She said that she was there to visit

another member, but felt that she needed to leave and there we were! Maddie

really loves her and it really calmed her down and made things much easier for

mom! I needed that little boost!

My hubby even came through for Valentines Day with a card and a bottle of

wine! He even brought flowers for the girls! I needed that today!

Becky in Indiana Get more from the Web. FREE MSN Explorer download :

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