Re: Colgans clinic visit

[Guest guest]

A few questions, Ashauna:

1. What kind of formula does he take, both during the day and at night?

2. Have they ever told you to use powdered enzymes in the formula that is

drip fed at night?

3. Do you do any kind of lung treatments--nebulizer, hand percussion, etc.?

4. Have they ever tried a different enzyme with him? Not every enzyme

works the same, and some work for one person, but not for another. Cody

had tried several kinds til we found the right one (he uses Creon-5).

5. Has he ever had, or been tested for, reflux? That can cause constant

congestion due to aspirating it while he is sleeping.

Best of luck with this, Ashauna. This weight business is a really hard

thing to regulate and get going. Talk to you soon!

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

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

Colgans clinic visit

> Hello everyone,

> Our clinic visit went ok today. Colgan has been congested for all

life now and so this is always a concern. He have not been able to figure

out how to aleviate this yet. I hope soon though.

> Weight None. He is 14 lbs 8 oz And has been for over a month that

or less. Even with continuous feeds at night and formula at 28 cal per

ounce.

> He upped his enzymes again he is going to start taking Ultrase 12

during the day and one ultrase 12 and one ultrase 5 before bed durring

continuous feeds. He is only 7 months old and seems like he is taking a lot

of enzymes. I am worried about fibrosing colonopathy. Has anyone ever had

this or know much about it. Iknow that it takes a while for the large

amount of enzymes to induce this but at the rate we are going how knows I

thought that I would just ask for info.

> I also thought that I would type out the formula for figuring

enzymes and amount. I know that I have been wanting to know for some time

now and I had to dig and dig to find formula. I am sure that a lot of you

know this already but perhaps there are some new diagnosis out there that

may like to know.

>

> This is not scientific just in my terms ok.

>

> Weight in kilograms(2.2 per pound) X max amout of Lipase units per kilo.

( Colgan is at a 1500 max ) this gives you amount lipase per meal multiply

by weight in kilo

>

> ex. this is colgans numbers

>

> 6.5 x 1500 = 10050

> 10050 x 6.5 = 65000 units lipase per day

>

> I am sorry if confusing thought that I would just put in here in case

someone was like me and wanted to know where kid needed to be. The reason I

wanted to know is Colgan has had such a hard time regulating after many

changes to diet so I needed to sit and figure it out.

> Ok on with visit sorry

>

> About the MicKey button. Not yet. They want to give it a month with

NG tube to see what happens. So for now I will be e-mailing Colgans doc

every day with eatting and pooping schedual and we will figure out what to

do from this point.

>

> Kim also if you are reading this I thought that you would like to know

that Dr. Maupin out CF doc did not know about the intracellular test for

magnesium def. However has asked that I e-mail him the information and he

will see what we can do about getting it done for Colgan.

>

> Soo I will keep trying to get weight on this little one and hope for the

best talk with you all soon.

>

> Love to all of you

> Ashauna

[Guest guest]

_ yes he has been tested for reflux and shows significant amount of

this.

_ formula is pregestimil at 28 cal per ounce.

_ no have not tried powdered enzymes during night feedings. I have

thought about this I will ask doc about it

_ he has only been on Ultrase. I noticed something funny today though.

Colgan vomited this morning. I guess that the night feeds got to him.

In the vomit were a lot of the micro beeds from the Ultrase. As grose

as it sounds I picked one out and squeezed it it still had liquid

inside. Does anyone know if this is normal. I will be e-mailing doc

about tonight. I am wondering if the medicine is not getting to where

it needs to. The last dose he had for Ultrase was a 10:15 last night

and they were still there.

_ yes he does CPT and Neb treatments 4 times per day. Xopenex and

Pulmozyme

Any advice will help thanks and to any others who might suggest

something

Ashauna

[Guest guest]

Ok--more questions! :-D

1. For the reflux--does he take anything for it? Cody took Zantac at that

age, and he is now on Protonix. That could be a big part of his

congestion, and sounds like it is really important to have it taken care

of. If it can be taken care of without surgical intervention, that would be

much better.

2. While the Pregestimil is NASTY stuff, it is definitely what our kids

need. Have they ever talked about trying microlipids in the formula

to add calories? Cody gets 12 cc/can, but that would be too much for

Colgan at his young age. Maybe adding 3 or 4 cc per can (which would add

12-17 calories)--it doesn't sound like a lot, but it all adds

up!

3. The powdered enzymes are called Viokase, from Axcan Scandipharm. Here

is the breakdown of them:

Each 1/4 tsp (.7 g) contains:

Lipase...........16,800 USP units

Protease........70,000 USP units

Amylase........70,000 USP units

We mix 3/8 tsp/can for Cody's size.

4. If stuff isn't moving through very well, he may have what is known as

gastric emptying delay, or he may have trouble with the cilia in his

intestines not moving stuff through very quickly. Cody has both of

these, and several other CF patients that I have gotten to know have one or

both. Cody takes Reglan for it, and now they have also put him on

Cytotec to mature his tract faster. Cody has taken Reglan

(generic name Metachlopramide) pretty much since he was about 2-3 months

old.

4. How do you do his CPT? Every clinic has a different way of doing it,

and I'm just curious.

5. I am not familiar with Xopenex, other than that it is a drug used for

asthma--does Colgan have asthma too?

Let me know how things are going today!

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

>

>

> _ yes he has been tested for reflux and shows significant amount of

> this.

> _ formula is pregestimil at 28 cal per ounce.

> _ no have not tried powdered enzymes during night feedings. I have

> thought about this I will ask doc about it

> _ he has only been on Ultrase. I noticed something funny today though.

> Colgan vomited this morning. I guess that the night feeds got to him.

> In the vomit were a lot of the micro beeds from the Ultrase. As grose

> as it sounds I picked one out and squeezed it it still had liquid

> inside. Does anyone know if this is normal. I will be e-mailing doc

> about tonight. I am wondering if the medicine is not getting to where

> it needs to. The last dose he had for Ultrase was a 10:15 last night

> and they were still there.

> _ yes he does CPT and Neb treatments 4 times per day. Xopenex and

> Pulmozyme

>

> Any advice will help thanks and to any others who might suggest

> something

>

> Ashauna

[Guest guest]

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

>

>

> _ yes he has been tested for reflux and shows significant amount of

> this.

> _ formula is pregestimil at 28 cal per ounce.

> _ no have not tried powdered enzymes during night feedings. I have

> thought about this I will ask doc about it

> _ he has only been on Ultrase. I noticed something funny today

though.

> Colgan vomited this morning. I guess that the night feeds got to

him.

> In the vomit were a lot of the micro beeds from the Ultrase. As

grose

> as it sounds I picked one out and squeezed it it still had liquid

> inside. Does anyone know if this is normal. I will be e-mailing

doc

> about tonight. I am wondering if the medicine is not getting to

where

> it needs to. The last dose he had for Ultrase was a 10:15 last

night

> and they were still there.

> _ yes he does CPT and Neb treatments 4 times per day. Xopenex and

> Pulmozyme

>

> Any advice will help thanks and to any others who might

suggest

> something

>

> Ashauna

[Guest guest]

Zach just started on Pancrecarb and is doing much better. He gained

11 oz in less than a month. Before he had not gained an ounce in 3

months. We also adjusted his diet, but the different enzymes helped

too, I think.

> 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]

has never had an enzyme problem. I swear by Creon 5!

Re: Colgans clinic visit

Zach just started on Pancrecarb and is doing much better. He gained

11 oz in less than a month. Before he had not gained an ounce in 3

months. We also adjusted his diet, but the different enzymes helped

too, I think.

> 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]

I met the Solvay rep at a Great Strides walk and asked Zach's cf doc

about switching to Creon, but he wanted to try Pancrecarb first.

He thinks that there really isn't much difference between enzymes.

Obviously he isn't the one trying to digest his food with the help

of enzymes! Even a little bit of improvement means a lot to Zach.

Sara

> > 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]

You are correct about the bicarb, Gale. While it didn't work for Cody, I

have heard several say how well it has worked for them.

Re: Colgans clinic visit

> 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]

Cody has had the best success with Creon 5 also--although we did try several

before we found the right one. We tried going up to Creon 10 (since he

takes 8-12 with a meal), but they didn't work as well. The pharmacist and

our doc both said that the coating and formulation is slightly different

with the different strengths, so we're sticking with this one.

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

>

>

> Zach just started on Pancrecarb and is doing much better. He gained

> 11 oz in less than a month. Before he had not gained an ounce in 3

> months. We also adjusted his diet, but the different enzymes helped

> too, I think.

[Guest guest]

Most folks will settle with one for awhile & then as they get older &

sometimes changing what they eat , many reasons, they need to change. My

ERIN has always been on Pancrease & never changes .except the ## & the

strength . She is at MT16 now..The PANCRECARB has the bicarb already in it

so folks don't have to chew the TUMS all the time :)----if they have

that problem. Many do, & some take Zantac ...or something else to settle the

cramps...BUT , it is wonderful that we have so very many to change around

to. I hope you all have a great weekend ahead

LOVE & HUGS, grandmoMBEV

Re: Re: Colgans clinic visit

has never had an enzyme problem. I swear by Creon 5!

Re: Colgans clinic visit

Zach just started on Pancrecarb and is doing much better. He gained

11 oz in less than a month. Before he had not gained an ounce in 3

months. We also adjusted his diet, but the different enzymes helped

too, I think.

> 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]

That's funny they would say that .......about Pancarb. it isn't sold

there.............YET.

maybe they are meaning the ULTRASE.........it is sold in other countries.

not all but some. Glad its working for you .It is really good for its

purpose .Saves 7 makes one less med a person has to take.

LOVE & HUGS, grandmomBEV.

Re: Colgans clinic visit

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

>

>

> _ yes he has been tested for reflux and shows significant amount of

> this.

> _ formula is pregestimil at 28 cal per ounce.

> _ no have not tried powdered enzymes during night feedings. I have

> thought about this I will ask doc about it

> _ he has only been on Ultrase. I noticed something funny today

though.

> Colgan vomited this morning. I guess that the night feeds got to

him.

> In the vomit were a lot of the micro beeds from the Ultrase. As

grose

> as it sounds I picked one out and squeezed it it still had liquid

> inside. Does anyone know if this is normal. I will be e-mailing

doc

> about tonight. I am wondering if the medicine is not getting to

where

> it needs to. The last dose he had for Ultrase was a 10:15 last

night

> and they were still there.

> _ yes he does CPT and Neb treatments 4 times per day. Xopenex and

> Pulmozyme

>

> Any advice will help thanks and to any others who might

suggest

> something

>

> 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]

,

_ 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]

Gale ,

I am thinking that this may be what is going on because he really

is taking the cal he needs he is just not retaining anything. Was this

something that you were able to get a perscription for or did you have

to seek somewhere else.

I have been reading up on it trying to figure out if it might be

what Colgan needed. Glad to know that it is working for Abby.

Ashauna

[Guest guest]

Thanks Sara

I am going to ask about these enzymes

Ashauna

[Guest guest]

,

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]

Sara

I totally understand that. I think that they get in a rut of just

offering one type to everyone thinking that any will do the job

obviously not in many cases.

Ashauna

[Guest guest]

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]

,

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]

Ashauna,

's on Reglan and zantac too. was on pregestimil at birth (not

because of CF but because of an " immature digestive system " witch was really CF)

She was switched very quickly to another formula and then to isomil. I wonder

if Colgan wouldn't do better on something like that for weight gain......

The VioKase can be mixed with water and sent through the g-tube at any time.

gets her regular Creon 5 in the beginning of a feed and then about half

way through she gets the viokase. Does the ng tube have a med port separate

from the port where the feeding goes? That is how we shoot stuff through the

g-tube.

About The problem you were having with the enzymes coming out in his

poop.....Are you giving all of them to him when he starts the mea/feed after

having Reglan? I am wondering if the enzymes are being emptied from the stomach

and upper part of the intestine too early in the feed. Try giving half at the

beginning and the other half about half way through the feed. This may help

with the undigested formula and beads. Also if he has undigested beads, he will

probably end up with a sore bottom from them.

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,

Of course I don't mind you asking! takes 4 or 5 with snacks and 6 with

tube feeds and with meals. She also takes VioKase with tube feeds.

I believe creon 5 is 5000 units per cap, Creon 10 is 10,000 and creon 25 is

25,000. All of the different Pharmaceutical companies enzymes are a bit

different from each other in terms of what is used in the covering of the bead,

maybe what is in one is more easily digested than what is in another.

Re: Re: Colgans clinic visit

,

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]

,

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.

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]

As far back as I can remember we did all 9 positions. We started it

ourselves when we brought him home at 1 month (but they had done it in the

hospital, too). By two months we had switched to the CF center, and they

did an intensive 3-day training (part of their protocol), in which we

learned every detail you could ever imagine about CF (that they knew at the

time). From then on, it was 9 positions--front upright (later changed to

back upright, when he was able to sit up), front flat, left side flat, back

flat, right side flat, front tilt, left side tilt, back tilt, and right side

tilt. We also used an O2 mask with the end hole covered with tape, to make

a good " cup " --fit nice in the hand, too.

Well, still feeling yukky--boys are up getting dressed for school, then it's

time for treatment. I have to keep Cody home an extra hour to do it all,

cuz the Nyquil caused me to unknowingly turn my alarm off and we got up

about 45 minutes late! OOOOPS!!

Later!

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 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]

I know--everyone has their own way of doing things! So far three clinics

have told us to mix the Viokase in--one of which is one of the CF Center in

Minneapolis--and so has the Scandipharm dietitician when I met with one at a

conference. The problem that Cody has always had, and that Colgan seems to

have, is not that they pass through unused, it's that they just don't go

anywhere at all, and come out with the vomit. With gastric emptying delay,

like Cody has, stuff just " sits " in the stomach, and takes forever to start

moving through the digestive tract. As our doc explained--the stomach

basically keeps " contracting " , or spasming, and loosening, sort of just

mixing up all the food and stomach acid, etc., then pushing it through and

into the digestive tract. But in Cody's case, instead of a rhythmic, steady

spasming, it only does it once in awhile (he calls it a " lazy

stomach " --LOL), so it takes a considerable amount of time to move the stuff

through, and as a result, the enzymes will settle to the bottom, and the

liquid will move through without the enzymes. So now his g-button has been

replaced with a g-j button, and the drip formula is put right into his

jejunum, bypassing his stomach completely. The reason we were told to add

the Viokase directly to the formula in the bag is because studies showed

that was equally effective, and for some patients more effective, than

giving a dose every few hours. When we did try for a short while to just

give it to him every few hours instead throughout the night (back when he

was only on night feeds and not 24-hr feeds), he developed a severe rash on

his bottom and diarrhea, which went away as soon as we started mixing it in

again.

Different strokes for different folks--another example of how damn complex

this disease is! Gets so frustrating sometimes!

Love to all,

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

> ,

> 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]

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]

Abby's CF Clinic changed the enzyme at our request. They had to give

us a new perscription. I always say " we " , but Abby is my grand

daughter so it is really her mom and dad that usually go to clinic

with her. I will go next week, since her dad has to work and it's

easier if two people take her. One can entertain her while the other

talks to the doctors.

Try not to get too tired. I get depressed if I get too tired.

Take care,

Gale

> Gale ,

> I am thinking that this may be what is going on because he

really

> is taking the cal he needs he is just not retaining anything. Was

this

> something that you were able to get a perscription for or did you

have

> to seek somewhere else.

> I have been reading up on it trying to figure out if it might

be

> what Colgan needed. Glad to know that it is working for Abby.

>

> Ashauna