Re: Colgans clinic visit

[Guest guest]

For Cody, I could tell he was aspirating because he would be so congested

and coughing in the morning--he was trying to clear out all the " junk " that

had accumulated during the night. After his first treatment and pounding in

the morning, he would be clear until after naptime again, when he would lay

down. We elevated the head of his bed and everything, but it didn't

help--he'd just end up in a pile at the end of the bed!!!! LOL To this

day, he often ends up migrating down the bed while he sleeps--must be a

habit! LOL Also, after we would suction his lungs, you could even see the

formula in there--it was pretty gross! We always waited to pound him until

about 2 hours after we fed him, though, and I also sometimes would try to

pull out any residuals right before also, and put them back when I was done.

Re: Re: Colgans clinic visit

> Thanks ,

> Colgan has not aspirated any yet. that I know of. Is it always

> easy to tell if they do this?

>

> Ashauna

[Guest guest]

,

what are you still doing up? You had better get into that bed and

get better. Just kidding

I wonder then if Colgan may be. He always coughs in the morning

hummmmm. I think that my doc may be slipping I just hope that I can

figure out all of this stuff and find what works best for Colgan soon.

Ashauna

[Guest guest]

I used to let sleep in her bouncer or rocking chair to avoid aspiration.

When she was too big for the bouncer and feeding chair she went into her

stroller. would end up at the low end of the bed when I raised the crib

too. That is why I let her sleep in the chairs and stroller. I just carried

the whole thing upstairs (my hubby had to help with the stroller) when she was

asleep.

Re: Re: Colgans clinic visit

> Thanks ,

> Colgan has not aspirated any yet. that I know of. Is it always

> easy to tell if they do this?

>

> Ashauna

[Guest guest]

Sometimes this disease and figuring out what works best is a matter of trial

and error. We have to just try one thing, then move on to the next if it

doesn't work.

And I was still up cuz I was working on my kitchen again. My husband came

home from out of town for the weekend, and is all gung ho to get it

finished, so I was actually just staying out of his way while he sanded off

the rest of the paint on the window. Now I am working on the corner details

and then we'll use the hand sanders and smooth it all out. But, we have

flag football in an hour and a half for the boys at the YMCA, so we will be

doing that first, then running to Walmart and Lowe's.

Better get going and get busy!

Love

S., mom to Cody (7, pwcf, nissen for severe reflux, malnutrition,

ADHD), DJ (9, nocf, asthma, ADD), and a (14, nocf, ADHD)

Re: Re: Colgans clinic visit

> ,

> what are you still doing up? You had better get into that bed and

> get better. Just kidding

>

> I wonder then if Colgan may be. He always coughs in the morning

> hummmmm. I think that my doc may be slipping I just hope that I can

> figure out all of this stuff and find what works best for Colgan soon.

>

> Ashauna

[Guest guest]

That's what we did during the day for the first several months, but for some

reason, when we would do that at night, Cody would scream bloody murder

until he was in his crib, then later, even at naptime. He's always been a

headstrong, stubborn, " knows his own mind " kind of kid--my mom used to laugh

and laugh when I'd tell her stories (she still does!)--says I got one that I

truly deserved! Now, I ask you, is that very nice??? LOL LOL LOL

S., mom to Cody (7, pwcf, nissen for severe reflux, malnutrition,

ADHD), DJ (9, nocf, asthma, ADD), and a (14, nocf, ADHD)

Re: Re: Colgans clinic visit

>

>

> > Thanks ,

> > Colgan has not aspirated any yet. that I know of. Is it always

> > easy to tell if they do this?

> >

> > Ashauna

>

>

>

>

[Guest guest]

Ultrase was bigger pellets than Creon or Pancrecarb. I have never

seen the Pancrease pellets.

Good luck,

Gale

> Gale

> Are they really smaller? It seems like they are so small but

other

> than pancrease we have not used any other so I don't know. Thanks

for

> info

>

> Ashauna

[Guest guest]

Abby used to take 5 Pancrecarb MT4 per meal. Since starting

Prilosec, she is down to 2.5.

She has clinic on Tuesday. We'll see what they say.

Gale

> Gale,

> Has Abby always been pretty low with enzymes or did she require

> more at one point to maintain good stools? I am just wondering

because

> if she has never really needed a lot perhaps she is not having that

much

> of a problem with pancreatic insufficiency. Either that or I do

know

> that things can change on that aspect from needing more or less

even on

> a daily basis. Kind of funny that way. Makes it hard to really

> determine what she may need huh?

>

> I hope this helps. It is good that she is not needing as many to

get

> her foods absorbed

>

> Ashauna

[Guest guest]

They ate small to average. that is what my ERIN takes & has all her 19

years. She did start out with the smaller ones & is now on MT16. Does very

well Her CF is mostly gastro too.

LOVE & HUGS, grandmomBEV

Re: Colgans clinic visit

Ultrase was bigger pellets than Creon or Pancrecarb. I have never

seen the Pancrease pellets.

Good luck,

Gale

> Gale

> Are they really smaller? It seems like they are so small but

other

> than pancrease we have not used any other so I don't know. Thanks

for

> info

>

> Ashauna

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be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

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[Guest guest]

Ashauna,

Hi, I replied to this earlier but it never came up so here I go again.........

When vomited it was usually right after a feed so there were sometimes

enzymes then. There were plenty of times that Some came out in her diapers but

I can't recall ever seeing them in vomit that long after she had eaten last.

Really, I don't know what to tell you.

is doing Great! She had the meet the teacher yesterday and it went well.

The teacher seems really nice and she knows my friend that I met through the

clinic who's daughter has CF. So, that makes me a bit more comfortable. She is

not completely clueless and has my friend to fill her in too.

I was going to say maybe Bev could help you find a support group in FL since she

is there, but it sounds like you are starting your own. Good for you! Maybe

Bev can refer some people to your group once you get it going. Good luck to you

on that front too!

Re: Colgans clinic visit

,

Have you ever noticed enzymes possibly in vomit like 10 to 12 hours

after feeding. Any one have you seen this before. It doesn't make

sense to me. Colgan vomited yesterday and the last time he had enzymes

was 10:00 pm. This happened at 8:00 in the am.

Thanks

Ashauna