frustration

[Guest guest]

So the doc calls to tell me not to get too excited about Kody's 3-day

success with some GT feeds and 2-3 week success with no GT output... he

says to give it more time, Kody has done this before, be prepared.....

etc etc etc... Bummer. I pointed out that even this miminal GT feed

will protect his liver from the ravages of TPN and I can live happy with

things even if they never get better than this. We have his GT taped in

(baloon deflated) and it is beginning to slip a bit. I dont want to

have to move this site and give him another hole to contend with.

THe prelminary path reports on Ken (11) were not good. He will look at

them tomorrow for sure, but expects to find eos all the way up and down

still. The question then is 1) was he compliant with the diet when not

at home? 2) Were the juice boxes not as protein-free as the powder? If

so, do we now place an NG in a child who has DRANK that nasty stuff for

5 weeks just to prevent that from happening and send him to middle

school with an NG???? I THINK NOT.

Killian's (2y/o) were better but he really wants to look at the before

saying for sure -- eos only at the lower end by path (but paths don;t

always agree with what the peds GI see) He is a real problem, nothing

left at the tip of his nose that isn't ulcered, scabbed and bleeding

from the NG.

Sorry this is so long. I supposed I could break them up by kid, but we

are all just one big eosinophilic tragedy. You've heard of

Shakespearean tragedies, this is a Harlowean tragedy.

-- Idiopathic Eosinophilic esophagitis; Mom to 15, IEE,

NIssen/GT; Ken,11, IEE; Korey,7, IEE (NG); Kody, 4, IEE/CIPO. G/JTs;TPN;

Killian,2, IEE (NG); SJHarlow@...

http://www.c4isr.com/harlow

[Guest guest]

In a message dated 10/23/01 10:54:12 PM Eastern Daylight Time,

dncalkins@... writes:

>

I know you were thinking trying the a/r creme. Did you ever purchase it and

try it? As someone recently said, I swear by it for tiny pimples I get on my

forehead. When I initially used it, it worked wonders for something I

couldn't get relief from after using noritate and tetracycline for months. I

haven't had to use it but every-now-and-then, but within the last couple of

weeks, my forehead was beginning to red, puffy, very tender (almost feeling

like a bad sunburn) and the pimples were slowly starting to show up again.

I've been putting a small amount of a/r creme to that area twice a day for

about 3 days now, and the small bumps are going away as well as the

tenderness and the swelling. Just my story, as heard many times on this

forum ; )

~~~Beth~~~

[Guest guest]

In a message dated 10/24/01 7:30:52 AM Mountain Daylight Time,

< <> I've been using dove soap for sensative skin and It making my face

> really dry and peely everytime I get out of the shower. > >

> i - Are you washing your face in the shower? I had the dryness problem

> until someone suggested I refrain from doing that. I shower now and wash

> my face at the sink immediately afterward, putting on Dr. Sy's oil for

> sensitive skin while my face is still damp. Then I follow with a

> moisturizing sunscreen for the day or the moisturizer I use at night. Since

I have pustules frequently, I dab Serious Skin Care Dry Lo directly on the

lesion with a Q-tip after I moisturize in the evening and let is sit all

night. Not washing in the shower has helped my dryness while moisturizing

and using the Dry Lo (sulfer-based, as is Sulfacet, which I have also used)

oon the lesions has taken care of both problems for me. You can order the

Dry Lo from www.hsn.com or ask your derm if you can try sulfacet. I think

the Dry Lo works best for me. Hope this helps! Jackie