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In a message dated 1/28/2006 6:50:00 PM Pacific Standard Time,

fladfam@... writes:

Can you postpone an IVIG infusion? We've

never been more then 2 days late, and especially with them being sick, I

hate the idea of them being at all late, but I'm not sure what to do

here.

____________________________________________________________________________

Dayna,

You can postpone it, maybe call the Immuno and ask?? Also worth noting: if

you go to an infusion center at a hospital--be sure to call them in advance

and let them know that you guys have been sick. That way, they can make sure

you have a private room so as not to expose any of the other patients.

I hope you're all feeling better---quickly. Especially you---it's hard to

take care of everyone when you're sick.

Sandi

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Dayna, I know that folks do it--- I don't think they postpone it for weeks or

anything-- but just a few days. We don;have ours on the same day -- i.e. not

always on wed or Fri-- we might get IVIG on a Monday and then 4 weeks get it

on a Friday--- You may want to call and ask. I know that the day hospital

where we go for IVIG has certain days they can;t do IVIG because they are doing

the growth hormone testing or have too many endoscopies scheduled for that day,

etc......

Sending lots of get well wishes and prayers your way......

+JMJ+

Peace Be With You,

><>Pattie

Piedmont Triad, NC

Mom to , age 11 & healthy; age 9, Shwachman-Diamond Syndrome; and

ph age 8, Shwachman-Diamond Syndrome.

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With my son we used to have to postpone if he was very sick because when he had

IVIG during a really bad infection he had an anaphylactic reaction so they liked

for him to be fever free and stable before doing IVIG which kind of seemed like

an impossible task many times! Good luck. I hope you all feel better soon.

-----

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Dayna!!

Yes you can. If it is already mixed they can hold it for 7 days. If

you miss ti after it is mixed...you WILL still be charged for teh

med. but if it is like our pharamcy at our hopital, & it does not

get mixed until the very moment you show up, you can postphone until

you are able to make the trip.

We have gone as long as 2 weeks due to dh,mom & blake being sick &

not wanting to bring our " pesky guests " along to anyone else(ya know,

tit for tat,....what comes around goes around.....if I don't want

Blake to get it, why would I expose someone else, Kinda things that

go through your mind when the PID gets sick!!!). So, just camm the

Infusion center talk to your nurse & see what they reccommend as far

as how long you need to wait to reschedule

Hope this helps, & you guys get well SOON!!!

(mom to Blake )

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

>

> Hey all - I have a question.

>

> Charlie, and Tommy are all due for their infusion on Monday -

> we've had quite the sickly week here - Tommy & started the

week

> with head colds, sore throats, and croup, on Wednesday morning my

> husband started to come down with it, but Charlie and I were totally

> fine. We went out of town (Charlie and I) and by the next morning

I was

> sick as a dog, and barely able to drive us home. Finally went to

the

> doc today - Bri has a sinus infection, I have pneumonia, and Tom's

> infections have settled in his ears. So, we drive 4 hours one way

for

> our infusion, which is normally not at all a big deal, however, I'm

not

> sure we can do it tomorrow.

>

> Anyway, on to my question. Can you postpone an IVIG infusion?

We've

> never been more then 2 days late, and especially with them being

sick, I

> hate the idea of them being at all late, but I'm not sure what to do

> here.

>

> Any thoughts?

>

> Dayna

>

>

>

>

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Dayna,

Sorry that you are so ill....I would think you could postpone for a couple of

days...but they probably need it...Is there anyone else who could drive with

you??? I just wonder tho if the infusion center would want you all there...

I'm not sure I'm much help.

Hope everyone gets well fast.

Quoting Dayna S Fladhammer <fladfam@...>:

> Hey all - I have a question.

>

> Charlie, and Tommy are all due for their infusion on Monday -

> we've had quite the sickly week here - Tommy & started the week

> with head colds, sore throats, and croup, on Wednesday morning my

> husband started to come down with it, but Charlie and I were totally

> fine. We went out of town (Charlie and I) and by the next morning I was

> sick as a dog, and barely able to drive us home. Finally went to the

> doc today - Bri has a sinus infection, I have pneumonia, and Tom's

> infections have settled in his ears. So, we drive 4 hours one way for

> our infusion, which is normally not at all a big deal, however, I'm not

> sure we can do it tomorrow.

>

> Anyway, on to my question. Can you postpone an IVIG infusion? We've

> never been more then 2 days late, and especially with them being sick, I

> hate the idea of them being at all late, but I'm not sure what to do

> here.

>

> Any thoughts?

>

> Dayna

>

>

>

>

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  • 2 months later...
Guest guest

In a message dated 4/25/2006 7:44:35 PM Pacific Standard Time, brgk44@... writes:

Or do you think I'm burning enough that maybe I oughtto up my intake on days I'm doing the harder workouts?Thanks for your input!

IMHO, yes indeed!! I know when I work out more, I need to eat a little more. I try to aim for the proteins, etc that are good choices vs empty calories

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----- Original Message -----

From: " brgk44 " <brgk44@...>

> So what's your advice? Just ignore the hunger for a few days and

> it'll go away? Or do you think I'm burning enough that maybe I ought

> to up my intake on days I'm doing the harder workouts?

I think ignoring the hunger might be dangerous. It might set you up for a

binge. Try upping you calories a little and see how it goes. Sounds like a

little experimenting is in order. :)

You are doing great!

Ann

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Need advice...

Okay ladies, here's my situation. This entire time, I've been usingthe calculators off of caloriesperhour.com and it's worked very wellfor me. I haven't really been hungry (save for TOM and days I workedout very hard) and I've been losing at a good rate (average 10pounds/month).10 pounds a month is great!So this is what it says for me now (this is daily caloric intake formaintenence):Sendentary: 2570Active: 2770I always figure mine on sedentary. I know I am very inactive. I read somewhere that most people are considered sedentary. I usually average these two counts because I don't know what theyconsider 'active'. So let's say...2670/day to maintain. 2100-2200/day to lose, right? Well, I'm aiming for 2000-2200 mostdays, but lately I've been *starving*. Starving as in on a scale of 1-10 a 10? It's been since I started thenew step aerobics DVDs and doing the elliptical more at the Y. TodayI aimed for 2300 because I did the 45 minute step workout + somepainting. I wound up eating about 2500 (and no junk foods, lots oflean protein and fruits/veggies today).Have you tried changing the time of day that you eat?So what's your advice? Just ignore the hunger for a few days andit'll go away? Or do you think I'm burning enough that maybe I oughtto up my intake on days I'm doing the harder workouts?I would think that your calorie intake is plenty even on days you exercise. But mind you, Half time I don't know what I'm doing:) I'd try keeping my calorie intake the same and maybe dividing my meals and snacks up and eat more times thoughout the days with snacks. Instead of having 3 meals and 2 snacks. Try having 3 smaller meals and 5 snacks thoughout the day.Or even 4 small meals and 2 snacks. Just experiment a little and see. Thanks for your input!Just my opinion! It might not work but its worh a shot for a day or two. Good Luck!-Bonnie

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  • 3 years later...
Guest guest

hi all,

i have recently started giving my son enzymes and was hoping for to get some

help here....

A little bit about my son - he is currently 4 years old, non verbal,low tone and

low cognition and he tends to drool... main symptom low frustration tolerance -

cried a lot especially first two years of his life.

Our DAN recommended anti oxidant, vitamins and several other supplements - *he

tolerated none* and finally at 3 (even though blood test did not indicate any

major gut issues) I started him on the scd diet and that helped some...

So recently i started him on Trienza (past 3 wks)and i saw some improvement in

his drooling and that was very encouraging.. he seems to have tolerated it

fine.. so i am tryin gto figure out the next step..

so i read about the Low-n-Slow Method - and Tri-enza is not low protease.. since

jai tolerated the trienza well does that mean i can continue a high protease

broad spectrum enzyme

i read that Lacto (Enzymedica) - low protease broad-spectrum - shoudl i switch

him to that to get started on the right note...??

and my next step was going to be to switch to digest gold - is that too strong

or should i stick to just digest initially?

Basically he gets to eat only meat and vegetables and fruit smoothies and

almonds. no grains - no other protein.. so thats what i am targeting.... thanks

Maya

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