Re: Digest Number 555

[Guest guest]

,

I hope Spencer is feeling better and that the surgery goes well.

Congrats on the baby. I do agree that I would try breastfeeding if

possible. I wish I had with . Also, I just thought I'd let you

know, Elecare is not approved for use in children under the age of one.

Ross posts this right on their sight. Neocate is the only amino acid based

infant formula available for children under one. Anyway, I just thought I'd

let you know, and hope this is information that you never need to know and

that the baby is 100% healthy.

Also, for anyone else that is reading this, I would like to know how others,

that had an infant with this, knew if they were reacting to the baby foods.

Since 's only signs on the formula were blood in his stools and

he still gained weight, I wondered how I would tell if the baby foods were

also causing a reaction. Will he get enough of them to cause visible blood?

If not, how would I know? Thanks a bunch.

J.C.

> > Well Hello everyone,

> >

> > We are back home for less than 24 hours for an appointment for me. It's

> > been really crazy to say the least.

> >

> > Since it has been so long I will just give you all the update from the

> last

> > couple of weeks. Spencer just got out of the hospital from being there

> for

> > a couple of weeks. I took him into his surgeons office to look at his

CVL

> > site b/c it looked like it was infected. It has some puss that came out

> of

> > it. Well right there they admitted him and pulled his CVL the same day.

> > They put him on Vanco and to prepare him for surgery. They did decide

to

> > move his G-tube and put in a J-tube and put in a new central line (We

did

> a

> > MRI/MRV/MRA and found two veins left in his chest yeah!). Well he

decided

> > to get really sick and ended up on 4 times the amount of steroids, a

picc

> > line, and breathing treatment of two different drugs for about 5 days.

We

> > tried about three times to take him to surgery and all three times they

> said

> > he was too sick. So we are home now and surgery is scheduled for the

21st

> > of this month.

> >

> > Dr. Putnam was acting a little quiet and distant this last hospital stay

> and

> > my husband finally found out why........he has been thinking pretty hard

> > about Spencer and our new baby.

> >

> > First he wants us to seriously think about putting the new one directly

on

> > Elecare (as he believes this disease is genetic) so that we can by pass

> some

> > terrible times with ng tube and G-tubes and so forth. He told us what

> ever

> > we do, do not do the D*** Nissan on the new baby, it's for reflux only!

> His

> > words.

> >

> > He also has a theory about Spencer. Although Spencer seems to have

> > Gastroparisis, CIP and so forth he thinks he has something called

> " Visceral

> > Hyperalagesis " (sp) in addition to the Eos's disease. He explained it

> like

> > this.....that Spencer experiences an extreme amount of pain when the gut

> has

> > to do something. In other words, when Spencer gets fed a bolus of

Elecare

> > it will make his stomach bigger (which is normal) but for him it causes

an

> > extreme amount of pain and because the brain has an impulse for pain in

> the

> > gut it tells the gut where ever it hurts to shut down. So, in essence,

he

> > mimic's a lot of disorders. How we will ever treat this, I have no

idea.

> >

> > I have not looked this up yet on the web, but I think it is kinda

> rare...but

> > now sure.

> >

> > I will keep you posted though on how Spencer does with the surgery on

the

> > 21st.

> >

> > As for me........well, I am due on the 8th of August. I have seen the

> doc's

> > 3 times in Cinci and will deliver there at a hospital called Bethesda

> North.

> > I have had two ultrasounds so far. IT'S A GIRL!!!!!

> > I am so excited and so is both Mike and Spencer. We are going to name

her

> > Kelsey Marie (Not sure on the spelling though). I am going to the high

> risk

> > clinic every two weeks and also am doing ultrasounds frequently. On the

> > last ultrasound they found something called bright bowel.

> > Interesting......it can signify Cystic Fibrosis, obviously bowel

> disorders,

> > blocks and so forth so we are keeping close eye on it. Please pray that

> she

> > will be okay. Other than that, physically, she looks very normal.

> (Sharon,

> > didn't Clayton have bright bowel???)

> >

> > I decided to do a C-section again.........on the 1st of August, unless

she

> > decides to come early of course. My tummy is getting big and I am

> starting

> > to really feel pregnant.

> >

> > In 7 weeks our lease is up in Michigan so we are going to pack

everything

> up

> > and put it in storage. Mike is going to try to work out with his work

to

> > work three days in Michigan and two days in Ohio so we can keep the same

> > insurance and also be with a company that is so understanding of

Spencer's

> > condition. I sure hope that this works out. We really want to get a

> house

> > by May, so hopefully that will work out too. I told Mike, if I have to

> come

> > back from the hospital to the RMD I will scream bloody murder! LOL!

> >

> > Well, that is about it in the Allred household......I will keep you

> updated

> > as things progress.

> >

> >

> >

> >

>

>

>

>