Hopefully Clayton will go home tomorrow

[Guest guest]

Hi all:

Here is the latest:

1) Claytons EEG showed no seizures but again showed some abnormal vertex

waves. They think that he may still be having seizures but not registering.

Also he was on Ativan for 3 days prior to the EEG so this may have jaded

things.

2) He is tolerating his night feeds ok - he is now getting 60cc's per hour for

12 hours a night.

3) Yesterday it was like an alien had invaded Clayton as he was happy for the

first time since he was born - not ccranky all the time and actually smiing

for long periods of time - HE NEVER DID THIS BEFORFE. It seems that he was

actually happy - maybe he did not have stomach pain and was not hungry.

4) Today Clayton was not as happy and somewhat cranky. He refused to sleeo

most of the day and was up a couple of times last night - but still better

than before. He did wake up with a rash and a low grade fever. The rash was

on his legs and arms - FROM WHAT? - we are not sure. Last night they gave him

Pediatric Vivinex after they ran out of the Neocate 1+ (this was oked by GI

and nutrition) However the Vivonex contains sobean oil whereas the Neocate 1+

does not. We are going to try the Vivonex again tonight and if he is no better

then we will go back to the Neocate 1+. The theory behind switching was that

the Vivonex cintains more medium chain triglycerides than long chain ones

(Neocate is reversed) and thus may be easier for him to digest. ALso he only

needs 1000cc's a day of the Vivonex versus 1300cc's of the Neocate 1+ to get

100% of the RDA vitamins and such for the day.

5) We will be following up with neuro in 4-6 weeks to see if there are any

changes following Clayton getting the proper nutrition.

6) We should be able to go home tomorrow assuming that the feeds go well

tonight and his fever does not go up and he does not have a miserable night.

thanks to everyone for all your prayers and kind thoughts.

love,

sharon

[Guest guest]

So glad to hear you may be headed home and Clayton is seeming more happy!

I know you are anxious to go home and get a semi-return to normalcy. At

least as close as we parents of special needs children can get to normalcy.

Dawn, mommy to Dakota, 6(going on 20) and , 2-1/2 (eosinophilic

gastroenteritis, fundo 10/96)

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> Subject: [eosinophilic gastroenteritis] Hopefully Clayton will go home tomorrow

> Date: Wednesday, August 19, 1998 9:14 PM

>

>

>

> Hi all:

>

> Here is the latest:

>

> 1) Claytons EEG showed no seizures but again showed some abnormal vertex

> waves. They think that he may still be having seizures but not

registering.

> Also he was on Ativan for 3 days prior to the EEG so this may have jaded

> things.

>

> 2) He is tolerating his night feeds ok - he is now getting 60cc's per

hour for

> 12 hours a night.

>

> 3) Yesterday it was like an alien had invaded Clayton as he was happy for

the

> first time since he was born - not ccranky all the time and actually

smiing

> for long periods of time - HE NEVER DID THIS BEFORFE. It seems that he

was

> actually happy - maybe he did not have stomach pain and was not hungry.

>

> 4) Today Clayton was not as happy and somewhat cranky. He refused to

sleeo

> most of the day and was up a couple of times last night - but still

better

> than before. He did wake up with a rash and a low grade fever. The rash

was

> on his legs and arms - FROM WHAT? - we are not sure. Last night they gave

him

> Pediatric Vivinex after they ran out of the Neocate 1+ (this was oked by

GI

> and nutrition) However the Vivonex contains sobean oil whereas the

Neocate 1+

> does not. We are going to try the Vivonex again tonight and if he is no

better

> then we will go back to the Neocate 1+. The theory behind switching was

that

> the Vivonex cintains more medium chain triglycerides than long chain ones

> (Neocate is reversed) and thus may be easier for him to digest. ALso he

only

> needs 1000cc's a day of the Vivonex versus 1300cc's of the Neocate 1+ to

get

> 100% of the RDA vitamins and such for the day.

>

> 5) We will be following up with neuro in 4-6 weeks to see if there are

any

> changes following Clayton getting the proper nutrition.

>

> 6) We should be able to go home tomorrow assuming that the feeds go well

> tonight and his fever does not go up and he does not have a miserable

night.

>

> thanks to everyone for all your prayers and kind thoughts.

>

> love,

> sharon

>

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

>

[Guest guest]

Glad to hear you had at least a *glimpse* of Clayton as a happy kid. It

sounds like once you get the formula, fever and rash resolved that you will

finally have a happy little guy.

As far as the soybean oil thing, Matt's allergy to soy became severe enough

that he could not even tolerate soy oil or soy lecithin--two things which

ordinarily a soy allergic person can consume without reaction. So, you might

be on to something there is Clayton has a soy allergy.

Hugs! I hope you get to take him home today.

Lynda

[Guest guest]

In a message dated 98-08-19 23:08:51 EDT, you write:

<< At

least as close as we parents of special needs children can get to norma >>

Dawn:

This is one of the truest statement I have heard in a long time. As soon as I

can get used to an almost 17 month with a tube attached to his belly sleeping

in my room i guess my life will be back to normal.

love,

sharon

[Guest guest]

I sure think that our idea of normal are definitely different than others.

I think everyone drives 3 hours every week to see doctors and I am sure

thinks every kid has to take 10 meds a day. It is sad but this is

our normalcy.

Dawn, mommy to Dakota, 6(going on 20) and , 2-1/2 (eosinophilic

gastroenteritis, fundo 10/96)

----------

> From: SDidinsky@...

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

> Subject: [eosinophilic gastroenteritis] Re: Hopefully Clayton will go home tomorrow

> Date: Thursday, August 20, 1998 8:27 PM

>

>

>

> In a message dated 98-08-19 23:08:51 EDT, you write:

>

> << At

> least as close as we parents of special needs children can get to norma

>>

>

> Dawn:

>

> This is one of the truest statement I have heard in a long time. As soon

as I

> can get used to an almost 17 month with a tube attached to his belly

sleeping

> in my room i guess my life will be back to normal.

>

> love,

> sharon

>

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

>

[Guest guest]

In a message dated 8/20/98 8:29:13 PM Central Daylight Time, SDidinsky@...

writes:

<< 17 month with a tube attached to his belly sleeping

in my room i guess my life will be back to normal. >>

Sharon

What kind of a feeding pump? We hang Ens bag on an IV pole by my side of the

bed, he sometimes wraps the cord around himself, but it has eliminated some

alarms.

Jane

[Guest guest]

In a message dated 98-08-24 15:51:01 EDT, you write:

<< What kind of a feeding pump? >>

We have the Kangaroo pump although I wanted the new Zevex Entrnalite. I am

going to see how this pump works and if I do not like it I will ask the

insurance company to get me the one that I want.

love,

sharon

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

and Clayton (eosinophil gastroenteritis, food allergies, g-tube, Nissen and

possible latex allergy, some dd and undiagnosed neuro issues)