Re: Colgans clinic visit

[Guest guest]

The pellets inside of the Ultrase capsules are much larger than the

pellets inside of Pancrecarb or Creon. The ultrase pellets were to

hard for Abby to swallow when she was an infant.

Gale

> ,

> Is this like the Ultrase capsuls? 5000 units lipase per

pill? I

> have also heard of this one.

> I have been studying all of them to be honest trying to find the one

> that will work for Colgan the best.

>

> How many of these does have to take per day / meal? If you

do

> not mind me asking

> Ashauna

[Guest guest]

It is very, very possible that that is what is happening. If the Prilosec

and Zantac, along with the bi-carb in the pancrecarb, can neutralize the

stomach acid, giving the enzymes a chance to get through to where they need

to in order to digest the food without being " destroyed " by the stomach

acid, the enzymes will work MUCH better--and that is always nice! Not only

for their sake, but also for the pocketbook!

Keep growing, Abby!

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

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

Re: Colgans clinic visit

> Abby is having the opposite difficulty. She is needing less enzymes,

> which seems to make no sense. We have cut her dose in half, she's

> down to 2.5 pancrecarb MT4 per meal. She is not passing oil and

> still only having one stool per day. Yesterday she didn't have any

> stools. We don't understnad what is happening. Is it possible that

> the Prilosec and Zantec are doing a better job and she is needing

> fewer enzymes? She weighs 24 pds. and is 20 months old.

>

> Gale

[Guest guest]

What are " residuals " ?

Thanks,

Gale

> They changed him first to Prevacid, then to Protonix. Zantac

wasn't really

> doing it anymore, and Prevacid also didn't work as well as we'd

like. But

> Protonix has been great--I'm really pleased with it.

>

> For the Viokase, we mix it right into the feeding bag--actually, I

have a

> rubbermaid container that I put the formula and microlipids in,

then add in

> the enzymes and shake the heck out of it. I used to go through the

hassle

> of using a drink blender on it, but have found this works just as

well.

> Many of the formulas that these kids are on, such as Pregestimil and

> Peptamen Jr., are partially pre-digested in order to aid in the

digestion

> and absorption. The Viokase finishes the digestion, making it even

more

> easily absorbed. When you give enzymes before starting the

feeding, once

> they pass through (or NOT, as with Colgan!), they no longer digest

the

> formula that is going in. This is the same concept behind

staggering the

> enzymes throughout the meal. If you only take them at the

beginning of a

> meal, the food at the end has no enzymes available to digest it, as

they

> have already begun moving through the digestive tract.

>

> Even on the Reglan, Cody also has residuals all the time. It gets

VERY

> frustrating. I'm hoping the Cytotec begins to help that.

>

> Cody HATED the electric percussor--still does!! Our doctor

recommended

> using it only if we had someone watching him who was afraid to hand-

pound

> him (such as Grandma--she thought she'd break a rib! LOL). We did

nine

> different positions for 3 minutes each, 3 times/daily, more if he

was sick.

> Do you do the tilt positions?

>

>

>

>

> Re: Colgans clinic visit

>

>

> > ,

> >

> > _ For Colgans reflux he does take Zantac however, the doc did

mention

> > possbly needing to change this to a stonger acid reducer because

felt

> > that this may help him out more than Zanac. Is this possibly the

reason

> > they changed Cody to Protinex?

> > _ I feel the same about pregestimil. No we have not talked about

> > putting more calories in formula. He takes it a 28 cal just by

> > consentrating it more. I guess reasoning because he is not

getting the

> > calories he is taking right now they are just going right through

him in

> > " poops "

> > _ How do you do the Viocase. you just put it in with his drip

feeding

> > the entire bottle of formula? I thought that the milk would

deactivate

> > the enzymes because of the neutrality of it.

> > _Colgan does I feel have that he is also on Reglan however, seems

when I

> > check for residuals at next feeding there is always formula

remaining

> > after sometimes even 4 hours.!!!!! totally weird I would think

that this

> > would be empty by now.

> > _We do CPT with a hand help precussor. General phisiotherapy inc.

> > maker I believe. Colgan absolutly hates it so I am lucky if I

can get

> > 15 to 20 minuets from him.

> > _ Xopenex is along the same lines as Albureral I believe he takes

it

> > instead of Albut. He was really symptomatic of allergies so this

one

> > has worked better for him. No he does not have asthma that he

has been

> > diagnosed with anyways.

> >

> > any thoughts

> > Ashauna

[Guest guest]

Ashauna,

Abby is 20 months old and we still do not do any up-side-down CPTs

due to her reflux.

Gale

> ,

> I think that I am going to look into the Viocase because if you

> look at my log of Poops no pun intended LOL they are all really bad

> during the morning and early afternoon possible because his body is

all

> thrown out of wack with insufficient enzymes during night feedings.

>

> As far as CPT I also forgot to tell you I use kind of a hand made

thing

> out of a mask and tough depressors taped together I get a really

good

> " cup " with this. I got the idea from hospital they use it on

babies.

> we really have not been doing positions at all with Colgan and

no

> tilt because of reflux. Dr said that he was really too young to

worry

> about being so precise about it just so long as you do a good

treatment

> on all areas. What do you think How old was Cody before you

started

> positions and tilt.

>

> Thank you so much for all of your advice.

> Ashauna

[Guest guest]

According to Kate's doctors, the Prilosec enhances enzyme effectiveness,

reducing the amount of enzymes needed. It would have been good for them

to tell us that when she started the Prilosec! She started using it and

went two days without pooping. This prompted me to call, and then it

was explained that she would probably need fewer enzymes. Now that her

pH test has shown that she doesn't have reflux, she doesn't need the

Prilosec. However, her doctors said that many people w/ CF use

Prilosec (even if they don't have reflux) to get increased enzyme

effectiveness. I think this could be great for people who have to take

a lot of enzymes, but of course there may be consequences to staying on

Prilosec indefinitely. It seems that those of us caring for people with

CF are constantly considering the risks and benefits of the incredible

array of treatment options.

Jane

Mom of Kate, 4 w/cf

Re: Colgans clinic visit

Abby is having the opposite difficulty. She is needing less enzymes,

which seems to make no sense. We have cut her dose in half, she's

down to 2.5 pancrecarb MT4 per meal. She is not passing oil and

still only having one stool per day. Yesterday she didn't have any

stools. We don't understnad what is happening. Is it possible that

the Prilosec and Zantec are doing a better job and she is needing

fewer enzymes? She weighs 24 pds. and is 20 months old.

Gale

> > Ultrase didn't work well for Abby. We tried several and finally

> > found Pancrecarb. Abby has severe reflux also. The Pancrecarb

> has a

> > bi-carbonate coating that helps reduce stomach acids... I think.

> I

> > heard about it from someone on this list and we asked the CF

> clinic

> > to try it. They said that it is more commonly used in Europe.

> >

> > Gale

> >

>

>

>

[Guest guest]

Residuals are when you use a syringe and you " pull back " on the feeding tube

to see if you can get anything out. You don't want to have any residuals a

few hours after feeding.

Re: Colgans clinic visit

> >

> >

> > > ,

> > >

> > > _ For Colgans reflux he does take Zantac however, the doc did

> mention

> > > possbly needing to change this to a stonger acid reducer because

> felt

> > > that this may help him out more than Zanac. Is this possibly the

> reason

> > > they changed Cody to Protinex?

> > > _ I feel the same about pregestimil. No we have not talked about

> > > putting more calories in formula. He takes it a 28 cal just by

> > > consentrating it more. I guess reasoning because he is not

> getting the

> > > calories he is taking right now they are just going right through

> him in

> > > " poops "

> > > _ How do you do the Viocase. you just put it in with his drip

> feeding

> > > the entire bottle of formula? I thought that the milk would

> deactivate

> > > the enzymes because of the neutrality of it.

> > > _Colgan does I feel have that he is also on Reglan however, seems

> when I

> > > check for residuals at next feeding there is always formula

> remaining

> > > after sometimes even 4 hours.!!!!! totally weird I would think

> that this

> > > would be empty by now.

> > > _We do CPT with a hand help precussor. General phisiotherapy inc.

> > > maker I believe. Colgan absolutly hates it so I am lucky if I

> can get

> > > 15 to 20 minuets from him.

> > > _ Xopenex is along the same lines as Albureral I believe he takes

> it

> > > instead of Albut. He was really symptomatic of allergies so this

> one

> > > has worked better for him. No he does not have asthma that he

> has been

> > > diagnosed with anyways.

> > >

> > > any thoughts

> > > Ashauna

>

>

>

> -------------------------------------------

> The opinions and information exchanged on this list should IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

>

> ------------------------------------

>

>

>

[Guest guest]

Many don't--especially those with reflux. The reason we did is because he

kept aspirating due to the reflux, and the only way to get it out was to do

the tilt positions. We just weren't having much luck clearing him up doing

only the regular positions. We did a much milder tilt then, though, than we

did as he was growing older--probably only 20 to 30 degree tilt. We also

used to have to suction his lungs--boy did he HATE that!! LOL

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

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

Re: Colgans clinic visit

> Ashauna,

>

> Abby is 20 months old and we still do not do any up-side-down CPTs

> due to her reflux.

>

> Gale

>

> > ,

> > I think that I am going to look into the Viocase because if you

> > look at my log of Poops no pun intended LOL they are all really bad

> > during the morning and early afternoon possible because his body is

> all

> > thrown out of wack with insufficient enzymes during night feedings.

> >

> > As far as CPT I also forgot to tell you I use kind of a hand made

> thing

> > out of a mask and tough depressors taped together I get a really

> good

> > " cup " with this. I got the idea from hospital they use it on

> babies.

> > we really have not been doing positions at all with Colgan and

> no

> > tilt because of reflux. Dr said that he was really too young to

> worry

> > about being so precise about it just so long as you do a good

> treatment

> > on all areas. What do you think How old was Cody before you

> started

> > positions and tilt.

> >

> > Thank you so much for all of your advice.

> > Ashauna

[Guest guest]

Jane,

Did Kate outgrow her reflux?

Thanks,

Gale

> > > Ultrase didn't work well for Abby. We tried several and

finally

> > > found Pancrecarb. Abby has severe reflux also. The

Pancrecarb

> > has a

> > > bi-carbonate coating that helps reduce stomach acids... I

think.

> > I

> > > heard about it from someone on this list and we asked the CF

> > clinic

> > > to try it. They said that it is more commonly used in Europe.

> > >

> > > Gale

> > >

> >

> >

> >

[Guest guest]

Thanks for the explanation.

Gale

> > > They changed him first to Prevacid, then to Protonix. Zantac

> > wasn't really

> > > doing it anymore, and Prevacid also didn't work as well as we'd

> > like. But

> > > Protonix has been great--I'm really pleased with it.

> > >

> > > For the Viokase, we mix it right into the feeding bag--

actually, I

> > have a

> > > rubbermaid container that I put the formula and microlipids in,

> > then add in

> > > the enzymes and shake the heck out of it. I used to go through

the

> > hassle

> > > of using a drink blender on it, but have found this works just

as

> > well.

> > > Many of the formulas that these kids are on, such as

Pregestimil and

> > > Peptamen Jr., are partially pre-digested in order to aid in the

> > digestion

> > > and absorption. The Viokase finishes the digestion, making it

even

> > more

> > > easily absorbed. When you give enzymes before starting the

> > feeding, once

> > > they pass through (or NOT, as with Colgan!), they no longer

digest

> > the

> > > formula that is going in. This is the same concept behind

> > staggering the

> > > enzymes throughout the meal. If you only take them at the

> > beginning of a

> > > meal, the food at the end has no enzymes available to digest

it, as

> > they

> > > have already begun moving through the digestive tract.

> > >

> > > Even on the Reglan, Cody also has residuals all the time. It

gets

> > VERY

> > > frustrating. I'm hoping the Cytotec begins to help that.

> > >

> > > Cody HATED the electric percussor--still does!! Our doctor

> > recommended

> > > using it only if we had someone watching him who was afraid to

hand-

> > pound

> > > him (such as Grandma--she thought she'd break a rib! LOL). We

did

> > nine

> > > different positions for 3 minutes each, 3 times/daily, more if

he

> > was sick.

> > > Do you do the tilt positions?

> > >

> > >

> > >

> > >

> > > Re: Colgans clinic visit

> > >

> > >

> > > > ,

> > > >

> > > > _ For Colgans reflux he does take Zantac however, the doc did

> > mention

> > > > possbly needing to change this to a stonger acid reducer

because

> > felt

> > > > that this may help him out more than Zanac. Is this possibly

the

> > reason

> > > > they changed Cody to Protinex?

> > > > _ I feel the same about pregestimil. No we have not talked

about

> > > > putting more calories in formula. He takes it a 28 cal just

by

> > > > consentrating it more. I guess reasoning because he is not

> > getting the

> > > > calories he is taking right now they are just going right

through

> > him in

> > > > " poops "

> > > > _ How do you do the Viocase. you just put it in with his drip

> > feeding

> > > > the entire bottle of formula? I thought that the milk would

> > deactivate

> > > > the enzymes because of the neutrality of it.

> > > > _Colgan does I feel have that he is also on Reglan however,

seems

> > when I

> > > > check for residuals at next feeding there is always formula

> > remaining

> > > > after sometimes even 4 hours.!!!!! totally weird I would think

> > that this

> > > > would be empty by now.

> > > > _We do CPT with a hand help precussor. General phisiotherapy

inc.

> > > > maker I believe. Colgan absolutly hates it so I am lucky if I

> > can get

> > > > 15 to 20 minuets from him.

> > > > _ Xopenex is along the same lines as Albureral I believe he

takes

> > it

> > > > instead of Albut. He was really symptomatic of allergies so

this

> > one

> > > > has worked better for him. No he does not have asthma that he

> > has been

> > > > diagnosed with anyways.

> > > >

> > > > any thoughts

> > > > Ashauna

> >

> >

> >

> > -------------------------------------------

> > The opinions and information exchanged on this list should IN NO

WAY

> > be construed as medical advice.

> >

> > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

> TREATMENTS.

> >

> > ------------------------------------

> >

> >

> >

[Guest guest]

I think that we have it pretty easy. Knock on wood! Toni should

read this site. Abby doesn't need any tube feeds and we have never

had to suction her lungs.

Abby had a really difficult first eight months, but has not had any

problems for the past year. Toni (my daughter, Abby's mom) is always

worried that our luck will run out soon.

Abby has clinic next Tuesday. We'll see how she does.

Gale

> > > ,

> > > I think that I am going to look into the Viocase because

if you

> > > look at my log of Poops no pun intended LOL they are all

really bad

> > > during the morning and early afternoon possible because his

body is

> > all

> > > thrown out of wack with insufficient enzymes during night

feedings.

> > >

> > > As far as CPT I also forgot to tell you I use kind of a hand

made

> > thing

> > > out of a mask and tough depressors taped together I get a

really

> > good

> > > " cup " with this. I got the idea from hospital they use it on

> > babies.

> > > we really have not been doing positions at all with Colgan

and

> > no

> > > tilt because of reflux. Dr said that he was really too young to

> > worry

> > > about being so precise about it just so long as you do a good

> > treatment

> > > on all areas. What do you think How old was Cody before you

> > started

> > > positions and tilt.

> > >

> > > Thank you so much for all of your advice.

> > > Ashauna

[Guest guest]

Gale,

I know what you mean about having it pretty easy. I am very new to this

site and I love to read the posts from everyone. Some people have said to

me that it is very depressing reading about other peoples problems. To me

it makes me feel extremely blessed. My daughter is going to be 18

in November. She was in the hospital for the first time in June of this

year. She went in for a tuneup only because she was running low grade

temperatures and was just punk all the time. It turned out after all the

tests and iv's and such that it was her asthma. Her bronchial tubes were

totally impacted. She went through the PICC line and home iv's and

additional breathing treatments and additional vest treatments and it took

us until just the first part of August before she was feeling better and

back to normal activities. We went to clinic yesterday and she gained 20lbs

since June which puts her in the 95% in weight and he height is in the 75%.

Her pft's were back to what they were two clinic visits ago. Her FEV1 is

normally between 74 & 82. She is doing great. She told the dr at clinic

and the nurse that she never wants to go back to the hospital again. Before

we went I was having trouble with her doing her treatments and taking her

meds like she was supposed to. This was a eye opener for her. If I had one

wish for everyone in this group, it would be that there children could be as

healthy as my Steph with this disease so that when a cure is found they will

be healthy enough to enjoy the rest of their life.

Tina W. mother of Steph, almost 18 wcf

Re: Colgans clinic visit

I think that we have it pretty easy. Knock on wood! Toni should

read this site. Abby doesn't need any tube feeds and we have never

had to suction her lungs.

Abby had a really difficult first eight months, but has not had any

problems for the past year. Toni (my daughter, Abby's mom) is always

worried that our luck will run out soon.

Abby has clinic next Tuesday. We'll see how she does.

Gale

> > > ,

> > > I think that I am going to look into the Viocase because

if you

> > > look at my log of Poops no pun intended LOL they are all

really bad

> > > during the morning and early afternoon possible because his

body is

> > all

> > > thrown out of wack with insufficient enzymes during night

feedings.

> > >

> > > As far as CPT I also forgot to tell you I use kind of a hand

made

> > thing

> > > out of a mask and tough depressors taped together I get a

really

> > good

> > > " cup " with this. I got the idea from hospital they use it on

> > babies.

> > > we really have not been doing positions at all with Colgan

and

> > no

> > > tilt because of reflux. Dr said that he was really too young to

> > worry

> > > about being so precise about it just so long as you do a good

> > treatment

> > > on all areas. What do you think How old was Cody before you

> > started

> > > positions and tilt.

> > >

> > > Thank you so much for all of your advice.

> > > Ashauna

[Guest guest]

Yeah, it is weird I think the clinics tell us all different things so we go

crazy when we compare notes. I wonder if this is a new thing that they are

recommending mixing the enzymes in..... has had her tube since she was

about 18 months old and is getting ready to turn 5 now. has a g-tube

not a g-j so that probably makes a difference too. also has delayed

emptying that makes the reflux worse because the food hasn't moved and there is

more in there than there should be. I was also told that you can give the

enzymes after a feed but it doesn't work for . She just gets runny bowel

movements from giving all (or even half of) the enzymes at the end. Ya gotta do

what works for the kiddo you have. I think it is good to hear what others are

doing because if our situation changes, at least we know there are other

options to experiment with.

Re: Colgans clinic visit

> ,

> Isn't it funny, I was told NEVER to put the VioKase in the feed. That it

would break down the peptamen too early and possibly cause more reflux

problems. Rather that it should only be put through the port mixed with

water at the beginning and half way through the feed. We actually use her

regular enzymes at the beginning of the feed since is awake and wants

a snack then anyway. We have not had a problem with residual enzymes being

passed in a long time.

>

[Guest guest]

Good luck at clinic!! And you're welcome for the explanation of residuals.

My best wishes go to Toni and Abby and your family that Abby stays well and

happy for many, many more years to come!

Love,

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

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

Re: Colgans clinic visit

> I think that we have it pretty easy. Knock on wood! Toni should

> read this site. Abby doesn't need any tube feeds and we have never

> had to suction her lungs.

>

> Abby had a really difficult first eight months, but has not had any

> problems for the past year. Toni (my daughter, Abby's mom) is always

> worried that our luck will run out soon.

>

> Abby has clinic next Tuesday. We'll see how she does.

>

> Gale

[Guest guest]

Bless her heart! She sounds like a great kid--although at " almost 18 " , she

probably doesn't want to be called a kid anymore! LOL A great young woman.

I have talked to so many parents with older CF children/adults, that have

said they went through that stage of really fighting all the stuff, and I

DON'T look forward to it with Cody! LOL He already fights it sometimes,

and will literally yell " NO!! " and " melt " to the floor in a limp pile,

nearly impossible to pick up, when I say it's time to do treatment. Now,

when he's already sitting in the office playing PS2 at the time that I tell

him, and that's where he does treatment, am I even interrupting him??

NO--he would be doing the same thing whether he was doing treatment or not.

Oh well....kids! Gotta love 'em!

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

> Gale,

>

> I know what you mean about having it pretty easy. I am very new to this

> site and I love to read the posts from everyone. Some people have said to

> me that it is very depressing reading about other peoples problems. To me

> it makes me feel extremely blessed. My daughter is going to be

18

> in November. She was in the hospital for the first time in June of this

> year. She went in for a tuneup only because she was running low grade

> temperatures and was just punk all the time. It turned out after all the

> tests and iv's and such that it was her asthma. Her bronchial tubes were

> totally impacted. She went through the PICC line and home iv's and

> additional breathing treatments and additional vest treatments and it took

> us until just the first part of August before she was feeling better and

> back to normal activities. We went to clinic yesterday and she gained

20lbs

> since June which puts her in the 95% in weight and he height is in the

75%.

> Her pft's were back to what they were two clinic visits ago. Her FEV1 is

> normally between 74 & 82. She is doing great. She told the dr at clinic

> and the nurse that she never wants to go back to the hospital again.

Before

> we went I was having trouble with her doing her treatments and taking her

> meds like she was supposed to. This was a eye opener for her. If I had

one

> wish for everyone in this group, it would be that there children could be

as

> healthy as my Steph with this disease so that when a cure is found they

will

> be healthy enough to enjoy the rest of their life.

>

> Tina W. mother of Steph, almost 18 wcf

[Guest guest]

Cody had his nissen and tube placed when he was 18 months old, too! LOL I

remember mixing them as far back as we have done it, which was NG tube

feedings from when he was about 5 months on until he got his button. He had

a g-button until recently in June. I must say I like the g-j button better,

though! We don't fill up his stomach anymore.

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

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

Re: Colgans clinic visit

> Yeah, it is weird I think the clinics tell us all different things so we

go crazy when we compare notes. I wonder if this is a new thing that they

are recommending mixing the enzymes in..... has had her tube since

she was about 18 months old and is getting ready to turn 5 now. has

a g-tube not a g-j so that probably makes a difference too. also has

delayed emptying that makes the reflux worse because the food hasn't moved

and there is more in there than there should be. I was also told that you

can give the enzymes after a feed but it doesn't work for . She just

gets runny bowel movements from giving all (or even half of) the enzymes at

the end. Ya gotta do what works for the kiddo you have. I think it is good

to hear what others are doing because if our situation changes, at least we

know there are other options to experiment with.

>

[Guest guest]

Wow! That is really great. Good for .

Gale

> > > > ,

> > > > I think that I am going to look into the Viocase because

> if you

> > > > look at my log of Poops no pun intended LOL they are all

> really bad

> > > > during the morning and early afternoon possible because his

> body is

> > > all

> > > > thrown out of wack with insufficient enzymes during night

> feedings.

> > > >

> > > > As far as CPT I also forgot to tell you I use kind of a hand

> made

> > > thing

> > > > out of a mask and tough depressors taped together I get a

> really

> > > good

> > > > " cup " with this. I got the idea from hospital they use it on

> > > babies.

> > > > we really have not been doing positions at all with

Colgan

> and

> > > no

> > > > tilt because of reflux. Dr said that he was really too young

to

> > > worry

> > > > about being so precise about it just so long as you do a good

> > > treatment

> > > > on all areas. What do you think How old was Cody before you

> > > started

> > > > positions and tilt.

> > > >

> > > > Thank you so much for all of your advice.

> > > > Ashauna

>

>

>

>

[Guest guest]

,

thanks for the info. I was just wondering because doc wanted to

move Colgan up to Ultrase 12 it just scared me because it seems to fast

for big step. I know that it is just a higher dose of Lipase to make

him not have to take as many capsules but it just weirds me out.

How is doing? Did I tell you that they are trying to start

up a support group in our area? I am going to offer my help in any way.

I really hope they take me up on my offer. I also am glad to have face

to face contact with other parents or people living with cf. I have

been praying for this. Cross your fingers that it will all come

together.

Thanks hope you are all feeling well. Back to school can be hard with

all the colds huh?

Ashauna

[Guest guest]

,

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

[Guest guest]

,

That Nyquil can really do a number on you can't it? I am wondering

if I should start doing the positions with Colgan. it may help with his

congestion just being able to get it out and moving. I don't know. I

am starting to wonder if I am in a good clinic there are so many things

that they do not do.

Does anyone go to a Satelite clinic this is what we do? If so

have you all noticed not as much detail and experience there. Just

wondering.

Ashauna

Hope you feel better today

[Guest guest]

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]

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]

Gale,

Residuals are the remains in the stomach after a feeding. I check

this when I give him his next bottle to see if he has anything left in

stomach. Colgan always has a significant amount present. He has a

feeding tube so I just pull back with a syringe and see what is there.

Ashauna

[Guest guest]

No kidding it seems like we have to always consider there is going to be

a lot of bad with the good. UGHHHHHH

Ashauna

[Guest guest]

Thanks ,

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

easy to tell if they do this?

Ashauna

[Guest guest]

Gale,

I hope that Abby continues to do well for many years there are

many of these cf kids that do not have problems for a long time. We all

hope for those days I am sure.

I'll keep you in my thoughts on Tuesday. Hope for a clean visit.

Ashauna