My stomach is in knots

[Guest guest]

Phyllis,

I think it will be nice to know where you are at, whether AJ is getting

better or not. That way at least you know whether to continue your current

therapy or look at others.

As far as the foods, I would think that would definitely throw off the

results. Our GI has us feed as we normally do so he can see an on an

average day how his tummy looks. Kool-Aid is not good for either. I

think it may be the coloring or flavoring. Also, apple juice? Apple juice

gives me diarrhea, nevermind a super sensitive kid like ours.

>

>

> The OR nurse just called too. She wants AJ to come in prior to Tuesday

> since she has aspirated before so she can meet the anesthesiologist. That

> doesn't put my mind at ease.

>

always has to meet with the anesthesiologist before any

procedure/surgery. I kind of like talking to them. We got one one day

that was very nervous and kept talking about if his sat fell at all, he was

venting him. I definitely asked for a different one.

Dawn, mommy to Dakota(just a cutie, patootie) and (EG, fundo 10/96,

hoping there is light at the end of this dark tunnel)

[Guest guest]

I need a moment to vent. I have always looked at surgeries and

procedures as a means to an end-tubes in the ears means no more ear

infections etc...i have been very positive about everything that has

crossed our path. But right now, every time i think about Tuesday, my

stomach goes crazy. I am not sure why. Because there is no end?

Because AJ stopped breathing in recovery last time. I need to hear the

endoscopy/colonoscopy is worth it-even if she is filled with eos. Just

humor me-please. Thanks.

Also, I got a call from the nurse. She said Arissa can eat and drink

anything clear including apple juice, ice pops, water ice, jello, 7-up,

ginger ale, lollypops. Normally she can't have any of these. That

basically leaves us with 48 hours of water and misery. Would you indulge

her and give her these foods? Would it totally throw the findings off

because she is reacting to these foods and is not normally as bad.

(wishful thinking) Also, she said to put straight kool-aid powder

without any extra liquid in the magnesium citrate to sweeten it. Well,

kool-aid is not on the food list. Any suggestions?

The OR nurse just called too. She wants AJ to come in prior to Tuesday

since she has aspirated before so she can meet the anesthesiologist. That

doesn't put my mind at ease.

That is all my good news for today. Thanks for your time.

Phyllis-mom to

Arissa (12/22/95) EG, multiple food allergies, occasional asthma

Remi 6, Spina Bifida, developmental delays, allergies-nuts, shellfish and

latex

[Guest guest]

In a message dated 98-08-06 16:06:35 EDT, you write:

<< Would you indulge

her and give her these foods? >>

I give Clayton Pedialyte before his endoscopy. Pedialyte makes ice pops - and

these are considered clear liquids, Would this work. Also maybe a call to Dr.

or Dr. Sampson or the nurtitionist might help.

I hope everything goes well next Tuesday. I will keep my fingers crossed.

Also, Phyllis I wanted to call you today but I deleted your phone number by

mistake. Can you please e-mail it to me again.

love,

sharon

mommy to Jake (5)-nda, and fraternal 34.5 week twins Cole (3/30/97) - nda

(reformed refluxer) and Clayton(3/30/97) (eosinophil gastroenteritis, mild

developmental delays, food allergies (milk, soy, egg, wheat) Nissen and g-tube

scheduled 8/14/97)

[Guest guest]

\> You were so nice to take the time to write back. I went onto my next

> letter and you are talking about possibly admitting to the hospital

> yet again. My problems seem so minimal. I really appreciate your trying

> to calm me down. Where do you live? I wish I could offer more support,

> but we have only been acquaintance with this disease for two

> weeks-tomorrow. I am only a beginner.

>

Thanks for the compliment, it is nice to talk to people who know somewhat

what you are going through. I live in Fort Riley, KS. Where are you? We

found out had EG in December after 2 years of misdiagnosis(celiac,

cystic fibrosis, reflux, etc). is sick a lot but he is the happiest

kid I have ever seen. You will cry from pain and then laugh at a joke I

make. He is a great kid.

Dawn, mommy to Dakota(just a cutie-patootie) and (EG and fundo 10/96

and asthma and hoping there is light at the end of this tunnel and that the

networks would run a Beetleborg marathon)

[Guest guest]

Looks like you child had a fundo as well.....Dr. Putnam is furious that

doc's out there are diagnosing children with eg/ee/ec as reflux and doing

fundo on them. Vomiting (what seems like reflux)is a big symptom of

ee/eg/ec, so I am told.

----------

>

> To: eosinophilic gastroenteritis (AT) onelist (DOT) com

> Subject: [eosinophilic gastroenteritis] Re: My stomach is in knots

> Date: Thursday, August 06, 1998 10:56 PM

>

>

>

>

>

> \> You were so nice to take the time to write back. I went onto my next

> > letter and you are talking about possibly admitting to the

hospital

> > yet again. My problems seem so minimal. I really appreciate your

trying

> > to calm me down. Where do you live? I wish I could offer more

support,

> > but we have only been acquaintance with this disease for two

> > weeks-tomorrow. I am only a beginner.

> >

> Thanks for the compliment, it is nice to talk to people who know somewhat

> what you are going through. I live in Fort Riley, KS. Where are you?

We

> found out had EG in December after 2 years of misdiagnosis(celiac,

> cystic fibrosis, reflux, etc). is sick a lot but he is the

happiest

> kid I have ever seen. You will cry from pain and then laugh at a joke I

> make. He is a great kid.

>

> Dawn, mommy to Dakota(just a cutie-patootie) and (EG and fundo 10/96

> and asthma and hoping there is light at the end of this tunnel and that

the

> networks would run a Beetleborg marathon)

>

>

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

>

[Guest guest]

Dawn-

>I think it will be nice to know where you are at, whether AJ is getting

>better or not. That way at least you know whether to continue your current

>therapy or look at others.

You are right. See, I needed the procedure put into prospective.

>As far as the foods, I would think that would definitely throw off the

>results. Our GI has us feed as we normally do so he can see an on an

>average day how his tummy looks.

I would think this also but I think because it is a double-an endoscopy and

colonoscopy that they need her empty-thus the 48 liquid diet.

>Also, apple juice? Apple juice gives me diarrhea, nevermind a super

sensitive kid like ours. >>

AJ does drink pear juice sometimes but not very often. I don't want to

chance it.

> always has to meet with the anesthesiologist before any

>procedure/surgery. I kind of like talking to them. We got one one day

>that was very nervous and kept talking about if his sat fell at all, he was

>venting him. I definitely asked for a different one.

We would be meeting an anesthesiologist but not necessarily the one she

will have. Only on the morning of the procedure, can you meet your

anesthesiologist. And when we do meet, we will have a LONG talk!

You were so nice to take the time to write back. I went onto my next

letter and you are talking about possibly admitting to the hospital

yet again. My problems seem so minimal. I really appreciate your trying

to calm me down. Where do you live? I wish I could offer more support,

but we have only been acquaintance with this disease for two

weeks-tomorrow. I am only a beginner.

Phyllis-mom to

Arissa (12/22/95) EG, multiple food allergies, occasional asthma

Remi 6, Spina Bifida, developmental delays, allergies-nuts, shellfish and

latex

Phyllis-mom to

Arissa (12/22/95) EG, multiple food allergies, occasional asthma

Remi 6, Spina Bifida, developmental delays, allergies-nuts, shellfish and

latex