Clayton was back at the ER tonight

[Guest guest]

Hi all:

Sorry I have been out of the loop for the past week but Clayton has not been

doing well since Sunday. Sunday night he started to have a hard time with his

feeds and it has been going downhill since. Wednesday night he was up almost

all night screaming, gagging, coughing, etc. He could not tolerate his feeds

and we had to turn the pump off for an hour (vented him) and then lowered the

rate to 50ccs. He was still not happy and in the morning I called the GI who

said call the surgeon he said call the ped and go see the ped to rule out any

obvious infection.; Saw the ped at 5pm - no ear infection, throat infection,

etc. but his stoma site was horrible, red, starting to bleed, very granulated

and foul smelling. (for those that do not know CLayton had a Nissen and g-tube

placement on August 14th) Ped thought he might have an infection so called

the surgeon and sent me over to the ER. Well no infection at the site but

overgrown granulation tissue - then used silver nitrate and re-wrapped it.

The Surgeon also was concerned about his cough so they ordered chest x-rays to

rule out aspiration and pneuminia. Well no aspiration nor pneumonia but THE

CHEST X-RAY SHOWED THAT CLAYTON WAS FULL OF STOOL - ALMOST TO THE POINT OF

OBSTRUCTION AND IMPACTION. OUCH. Well they gave him an enema and sent us home

and told us to call if he did not go by the time we got home. Well be went but

just a tiny bit - of liquid - not a lot - especially from the way they were

talking. I tried to call the ER back but they put me on hold for 20 minutes. I

will call the surgeon in the AM. The surgeon on call was very concerned about

all the stool and said that something needs to be done - WHAT I do not know as

Clayton has had trouble pooping since birth and so far we have gotten no

anwers. FRUSTRATION IS WHAT YOU Hear.

On a good note Clayton had his IFSP on TUesday and we are finally going to get

him the services he needs: 1 hour a week with a special education teacher; 1/2

hour a week of OT to work on Sensory Intergration issues and feeding issues,

PT once a month to work on gross motor and balance and speech consult/ They so

not feel that he has the attention span for speech therapy yet but will start

to provide it as his attention span gets better. Also he will be joining the

baby group that is held at the Early Intervention Center.

I do not know if anyone has any answers or suggestions but thanks for

listening and letting me vent.

love,

sharon

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

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

possible latex allergy, some dd and undiagnosed neuro issues)

[Guest guest]

Sharon,

I wish there was something we could do to help. I will be going away tommorow

and will be out of touch for a week. You will be in our thoughts and prayers.

Jen

( 11/7/95, eosinophilic esophagitis, food allergies, asthma)

[Guest guest]

In a message dated 98-09-18 18:24:55 EDT, you write:

<<

SURELY CLAYTON IS ON NEOCATE via tube feed? >> NEOCATE 1+ via g-tube

Is he taking any prednisone? >> Not yet. We saw Dr. Sampson in NY today and

he said that we are actually in a better position that losts of people since

Clayton was diagnosed so early 6 months and really has not been exposed to too

many things. However, he did restrict his diet further and actually took him

off some foods and put him on a steroid cream for his excema (which is severe)

and he said clearly caused by food allergies. He can have potatos, oats, rice,

corn, apples. He can continue to have barley (in rice krispies) for 3 more

weeks and after that I need to call and reposrt because barley can be causing

some of his problems. Since this should be the only food that he will be on

that should cause him problems he will assume that it is the barley. We will

go back in 3-4 months.

I did find out why ist is so hard to get an appointment with him - HE ONLY

SEES 10 PATIENTS A WEEK as he spends a lot of his time doing research.

love,

sharon

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

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

possible latex allergy, some dd and undiagnosed neuro issues)

[Guest guest]

Sharon,

I am so sorry you are having such trouble. Sounds an awful lot like

what we went through with Kody right after his surgery.. but we did not

konw then that he had EE.

SURELY CLAYTON IS ON NEOCATE via tube feed?

Is he taking any prednisone?

SJHarlow@...

http://www.c4isr.com/harlow

[Guest guest]

Hi, I just wanted to let you know that our ped is setting everything up to

go to Walter and says the only day Dr. Bornstein, who he's already

talked to, will see him is on Wednesday. He says we will either go this

Wed the 23rd which I doubt will happen since we haven't heard anything or

the first Wednesday in October since he is going to be out on the 30th.

Dawn, mommy to Dakota, 6 and , 2-1/2 (eosinophilic gastroenteritis,

fundo 10/96)

----------

> From: SJHarlow@...

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

> Subject: [eosinophilic gastroenteritis] Re: Clayton was back at the ER tonight

> Date: Friday, September 18, 1998 5:24 PM

>

> Sharon,

>

> I am so sorry you are having such trouble. Sounds an awful lot like

> what we went through with Kody right after his surgery.. but we did not

> konw then that he had EE.

>

> SURELY CLAYTON IS ON NEOCATE via tube feed?

>

> Is he taking any prednisone?

>

> SJHarlow@...

> http://www.c4isr.com/harlow

>

>

[Guest guest]

Sharon,

I was really asking about the necoate, since Clayton just got a GT and

his symptms are mimicking Kodys' before we swithced him to Neocate

SJHarlow@...

http://www.c4isr.com/harlow