Re: New here and a question

[Guest guest]

Do not leave yourself at the mercy of the hospital. I know that others can

give you specific suggestions on what to make ahead of time. I can tell you

that you cannot trust them to give your son scd legal food no matter what

they assure you of.

Meleah scd 05/06

iel 3yrs., asd

Ethan 5yrs., Mark 1yr.

New here and a question

> Hello, I am new here. I just started my son and

> myself on the diet on Monday and things are going very

> well.

> My son has intractable seizures and is on a number of

> medications and also has some strong food and additive

> sensitivities. I'm hoping this diet will help him in

> a number of ways.

> I have a question about hospitalization? He has just

> been scheduled for a 48 hour video EEG at the hospital

> in September. I am wondering if anyone has any

> suggestions for taking food for him? I really don't

> want to be at the mercy of a hospital dietician

> department to get the diet right. Any suggestions

> would be greatly appreciated.

> I am very much looking forward to participating on

> this list.

> (mom to Mikey 15)

>

>

> Phyllis

>

> __________________________________________________

>

[Guest guest]

Hi Phyllis,

Welcome to the list. My daughter is a seizure kid, too.

We've been through a couple of hospitalizations while on special diets. I've

learned the hard way to just plan to bring ALL of his food in from home. Even

scrambled eggs in a hospital are not safe... they usually use powdered eggs.

I don't have any great meal ideas necessarily... my daughter is pretty limited

in what she's able to eat, so everything has to be pureed pretty much... and

very plain.

You can probably count on being able to use a microwave at the hospital, but

check ahead about fridge use and space. You may prefer a cooler. You can

probably restock the ice there pretty easily.

Good luck,

Patti

New here and a question

Hello, I am new here. I just started my son and

myself on the diet on Monday and things are going very

well.

My son has intractable seizures and is on a number of

medications and also has some strong food and additive

sensitivities. I'm hoping this diet will help him in

a number of ways.

I have a question about hospitalization? He has just

been scheduled for a 48 hour video EEG at the hospital

in September. I am wondering if anyone has any

suggestions for taking food for him? I really don't

want to be at the mercy of a hospital dietician

department to get the diet right. Any suggestions

would be greatly appreciated.

I am very much looking forward to participating on

this list.

(mom to Mikey 15)

Phyllis

__________________________________________________

[Guest guest]

Hi Phyllis,

A previous discussion talked about surviving a hospital stay with

SCD. Be sure to check out this link. If it doesn't work, just look

for message 50516.

http://health.groups.yahoo.com/group/pecanbread/message/50516

Also there was a good post on traveling with SCD. There may be a few

tips for you there.

http://health.groups.yahoo.com/group/pecanbread/message/53997

Don't push new foods; his body will be stressed enough. Stay with

foods that are easy to digest.

Best of luck on healing.

-Sharon

>

> Hello, I am new here. > I have a question about hospitalization?

He has just

> been scheduled for a 48 hour video EEG at the hospital

> in September. I am wondering if anyone has any

> suggestions for taking food for him? I really don't

> want to be at the mercy of a hospital dietician

> department to get the diet right. Any suggestions

> would be greatly appreciated.

> (mom to Mikey 15)

>

>

> Phyllis

>

[Guest guest]

We were just in the hopsital for 3 days - unplanned ER admission for

seizures. I stayed with my son 24/7 to ensure nobody fed him or

administered drugs we hadn't approved. My husband cooked and brought

us food. The hospital and nurses seemed actually relieved to not have

the worry of feeding us with all the allergies (we didn't bother to

explain SCD, his allergies are severe enough).

I carry a list of his meds, diet, and alerts (no foods, no meds

unless specially compounded, no nitrous oxide, no dextrose IVs). I

gave this to the ER intake physician and the PICU nurses. They seemed

respectful and a little nervous and never did a thing without

consulting us.

The only slip-up was the MRI under sedation; we'd consulted with the

anesthesiologist and agreed on a safe anesthesia drug. But they

wouldn't let me accompany him into the ER, and when we went to get

him as he woke up discovered they'd inserted a dextrose IV (he has a

severe corn allergy). I insisted they remove it immediately and we

remained for a 4 hour observation for reactions. He only had a slight

eczema flare, fortunately.

I have always been nervous about how a hospital stay would go, but it

was not as bad as I anticipated. The SCD diet was the easiest part

(though hubby was exhausted from the cooking, which we normally

share).

We are having a 24-hour EEG in September - this time ambbulatory. If

diet or behavior is a concern, I would urge you to push for an

ambulatory EEG. Often these catch more things than an inpatient EEG.

With autistic kids or anywhere behavior is a concern, it is often not

difficult to push for outpatient treatment - hospital staff should be

sensitive to behavior issues and issues of the child's comfort, and

are usually relieved to not have to deal with these on the ward.

Suzanne

> >

> > Hello, I am new here. > I have a question about

hospitalization?

> He has just

> > been scheduled for a 48 hour video EEG at the hospital

> > in September. I am wondering if anyone has any

> > suggestions for taking food for him? I really don't

> > want to be at the mercy of a hospital dietician

> > department to get the diet right. Any suggestions

> > would be greatly appreciated.

> > (mom to Mikey 15)

> >

> >

> > Phyllis

> >

>

[Guest guest]

>

> We are having a 24-hour EEG in September - this time ambbulatory. If

> diet or behavior is a concern, I would urge you to push for an

> ambulatory EEG. Often these catch more things than an inpatient EEG.

> With autistic kids or anywhere behavior is a concern, it is often

not

> difficult to push for outpatient treatment - hospital staff should

be

> sensitive to behavior issues and issues of the child's comfort, and

> are usually relieved to not have to deal with these on the ward.

>

> Suzanne

We had a 24hr EEG at DuPont 5/05 - brought everyhting. I asked about

food storage ahead of time, and the nurses cleared a whole shelf for

us in THEIR fridge (not the pts one). We did use a micro to heat stuff

up (not a fan of that) but it worked out fine. Glenn had two allergy

badns - one for amoxicillan, and one that stated 'no foods not from

mom' (I was there the whole time). We were " just " GFCFSFCFYF,

Feingold, organic at the time ;-)

Some people find a little crock pot in the room helpful...if allowed.

-christine