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Katy,

Please do not beat yourself up over the lack of weight gain. It is not your

fault. I too, blamed myself for my daughter's weight or lack thereof at

times. Just hang in there.

Whenever my daughter gets hospitalized, she goes home with weight gain. She

does not have a g-tube yet. Her appetite is crappy at the moment and she has

some underlying kidney issues. It is so hard when I see the amount of time it

takes for my daughter to gain back even very small ounces that she has lost.

Sometimes I feel like we are back pedaling. I have tried everything I can

think of. It is as if she is on a hunger strike. At times she eats and eats

and eats, and she barely gains weight at all. Good luck.....Hope all goes well.

Jenna

Hannah 20months cf, Shamus 6 1/2 nocf, a 4 nocf

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Hi all!! Well Piper had her first annual visit at our CF clinic. It was

certainly an experience. Her doc was not happy with the amount of weight she

had gained. He said that it was cause for concern. He recently switched her

from pregestimil with polycose & microlipid, to pediasure with scandishake.

Well we had trouble with our supply company so we haven't been able to add the

scandishake until today. He suggested that we do night feeds with a pump, and I

gave him a very firm NO. With the problems she has had in the past couple of

months with her nissen, etc, I just didn't feel comfortable doing that. So he

is going to let me try the pediasure with scandishake for 4-6 weeks, and I will

take her in for another weight check. If it is not a considerable amount then

he is going to admit her because he thinks that there may be more to the

problem. I don't know what it could be though? He said something about having

her stool analyzed for fat absorption, etc.... I am so

frustrated!! Here I thought that we were doing good, she was taking all her

feeds by mouth, and only using her button for meds, and now were back to where

we started. Mu husband is now mad at me for this, like its my fault that she

isn't gaining enough weight, sometimes I wonder if he thinks that I'm not

feeding her or what!!!!

Sorry, for rambling, but I had to get this out!!

Katy

mom to Austin 4 no CF & Piper (turns 1 on Saturday) w/CF

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I have definitely been in your shoes. Ashton got his g-tube when he

was a year old and we love it. He is in the 25th percentil for his

actual age. Unfortunately, that is the only way he gets any food. He

refuses to eat by mouth but he never was interested in food and he

was also 11 weeks premature so there are other issues going on. How

about giving her a teaspoon of canola oil at every feeding? Every

teaspoon has 40 calories. It is a quick and easy way to boost some

calories.

As for night feeds, have you tried (you probably have) starting her

night feed right after you put her to bed and letting it run until

maybe 2am? And have they tried Reglan to keep vomiting to a

minimum? It worked like a charm for us. And Polycose was actually

bad for our son--it slows digestion and made it hard for his stomach

to empty which increased his vomiting.

Are you maxing out on enzymes? We had to use the highest dose in

order for it to work. He is on Viokase, the powder enzyme.

And finally, it is not your fault. It is just something that happens

to some CF kids and it sucks. I finally bought a nice digital infant

scale (from ebay I think) and we weight Ashton at night so we know

where we are at. It helps me tremendously know what is happening

with his weight.

Good luck.

mom to Ashton, 2 with CF

> Hi all!! Well Piper had her first annual visit at our CF clinic.

It was certainly an experience. Her doc was not happy with the

amount of weight she had gained. He said that it was cause for

concern. He recently switched her from pregestimil with polycose &

microlipid, to pediasure with scandishake. Well we had trouble with

our supply company so we haven't been able to add the scandishake

until today. He suggested that we do night feeds with a pump, and I

gave him a very firm NO. With the problems she has had in the past

couple of months with her nissen, etc, I just didn't feel comfortable

doing that. So he is going to let me try the pediasure with

scandishake for 4-6 weeks, and I will take her in for another weight

check. If it is not a considerable amount then he is going to admit

her because he thinks that there may be more to the problem. I don't

know what it could be though? He said something about having her

stool analyzed for fat absorption, etc.... I am so

> frustrated!! Here I thought that we were doing good, she was

taking all her feeds by mouth, and only using her button for meds,

and now were back to where we started. Mu husband is now mad at me

for this, like its my fault that she isn't gaining enough weight,

sometimes I wonder if he thinks that I'm not feeding her or what!!!!

> Sorry, for rambling, but I had to get this out!!

>

> Katy

> mom to Austin 4 no CF & Piper (turns 1 on Saturday) w/CF

>

>

>

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,

Piper got her tube when she was in the hospital in November, at the time it was

great, but even with the button she still didn't gain much weight. Just

recently she started taking all of her feeds by mouth and it was wonderful. My

and my husbands family were more willing to keep her for us since she wasn't

doing her tube feeds.

The only thing with night feeds is that she is very active in her sleep, and I'm

afraid that she might pull it out, or get twisted up in the tube itself. She

also has a nissen that she has partially " blown " , she has a hernia at the site

and I don't want it to herniate anymore, because it would require surgery to

fix. Yes she was on Reglan, but since she started taking her feeds by mouth we

haven't needed it. They found that when they did her upper GI that she wasn't

refluxing anymore.

Her enzyme dose is maxed, she in on the Creon 5 with a max of 14 per day.

Thank you for reassuring me that it is not my fault, but I can't help but feel

that way because her eating is totally up to me. I do make sure that she gets

all the feeds per day that they require, but apparently that isn't't enough. I

am so worn out with all of this, and it hasn't even been a year since her

diagnosis, please tell me that it gets better!!!

The scale thing isn't a bad idea, one that I haven't thought of, thank you!!

Thanks again!!

Katy

mom to Austin 4 no CF & Piper (1 on Saturday) w/CF

" J. " wrote:

I have definitely been in your shoes. Ashton got his g-tube when he

was a year old and we love it. He is in the 25th percentil for his

actual age. Unfortunately, that is the only way he gets any food. He

refuses to eat by mouth but he never was interested in food and he

was also 11 weeks premature so there are other issues going on. How

about giving her a teaspoon of canola oil at every feeding? Every

teaspoon has 40 calories. It is a quick and easy way to boost some

calories.

As for night feeds, have you tried (you probably have) starting her

night feed right after you put her to bed and letting it run until

maybe 2am? And have they tried Reglan to keep vomiting to a

minimum? It worked like a charm for us. And Polycose was actually

bad for our son--it slows digestion and made it hard for his stomach

to empty which increased his vomiting.

Are you maxing out on enzymes? We had to use the highest dose in

order for it to work. He is on Viokase, the powder enzyme.

And finally, it is not your fault. It is just something that happens

to some CF kids and it sucks. I finally bought a nice digital infant

scale (from ebay I think) and we weight Ashton at night so we know

where we are at. It helps me tremendously know what is happening

with his weight.

Good luck.

mom to Ashton, 2 with CF

> Hi all!! Well Piper had her first annual visit at our CF clinic.

It was certainly an experience. Her doc was not happy with the

amount of weight she had gained. He said that it was cause for

concern. He recently switched her from pregestimil with polycose &

microlipid, to pediasure with scandishake. Well we had trouble with

our supply company so we haven't been able to add the scandishake

until today. He suggested that we do night feeds with a pump, and I

gave him a very firm NO. With the problems she has had in the past

couple of months with her nissen, etc, I just didn't feel comfortable

doing that. So he is going to let me try the pediasure with

scandishake for 4-6 weeks, and I will take her in for another weight

check. If it is not a considerable amount then he is going to admit

her because he thinks that there may be more to the problem. I don't

know what it could be though? He said something about having her

stool analyzed for fat absorption, etc.... I am so

> frustrated!! Here I thought that we were doing good, she was

taking all her feeds by mouth, and only using her button for meds,

and now were back to where we started. Mu husband is now mad at me

for this, like its my fault that she isn't gaining enough weight,

sometimes I wonder if he thinks that I'm not feeding her or what!!!!

> Sorry, for rambling, but I had to get this out!!

>

> Katy

> mom to Austin 4 no CF & Piper (turns 1 on Saturday) w/CF

>

>

>

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Oh Katy,

I can really sympathize with you about the weight thing. We are still

struggling with it. Good for you for being firm about those night feeds. Have

you considered a small bolus feed after dinner? Maybe not every day but on the

days when she didn't eat much? say 2 or 3 times a week? has 6 feeds a

week. We always do them after dinner, they last about an hour. Those bolus

feeds might help.

Have you tried DuoCal? your pharmacy can probably order it or maybe the med

supply company. It is a " powdered blend of fat and carbohydrates " It's a

tasteless high cal powder that can be mixed with liquids like milk or pediasure.

Have they mentioned changing enzymes? Sometimes that helps.

The test they want to do measures how much fat is in the stool. They will

probably have you do a food diary at the same time to figure out how much fat

has been consumed. this should help them to know how much fat she is absorbing.

Your hubby is probably just frustrated too. Keep rambling, sometimes it helps!

frustrated

Hi all!! Well Piper had her first annual visit at our CF clinic. It was

certainly an experience. Her doc was not happy with the amount of weight she

had gained. He said that it was cause for concern. He recently switched her

from pregestimil with polycose & microlipid, to pediasure with scandishake.

Well we had trouble with our supply company so we haven't been able to add the

scandishake until today. He suggested that we do night feeds with a pump, and I

gave him a very firm NO. With the problems she has had in the past couple of

months with her nissen, etc, I just didn't feel comfortable doing that. So he

is going to let me try the pediasure with scandishake for 4-6 weeks, and I will

take her in for another weight check. If it is not a considerable amount then

he is going to admit her because he thinks that there may be more to the

problem. I don't know what it could be though? He said something about having

her stool analyzed for fat absorption, etc.... I am so

frustrated!! Here I thought that we were doing good, she was taking all her

feeds by mouth, and only using her button for meds, and now were back to where

we started. Mu husband is now mad at me for this, like its my fault that she

isn't gaining enough weight, sometimes I wonder if he thinks that I'm not

feeding her or what!!!!

Sorry, for rambling, but I had to get this out!!

Katy

mom to Austin 4 no CF & Piper (turns 1 on Saturday) w/CF

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Dear Kathy,

I do so hope you all can get this feeding on a roll for her. It can be such

a stressor . I also want to let you know that if you cant find the DuoCal ,

where you get your items, We carry it , and all items known to CF families

as well as all else for anyone. You can call me at 1- .Make sure

you & your doc feels this can help.

didn't want to eat anything but rice. & seuy sauce.....She never went on

feeds....we kinda teased her into better eating with the other kids in

house. She just decided it was time . ----as she got older , I used to ask

her " , don't you ever what to have boobs " YES, I did, they all laughed

so hard ......She has 2 younger sisters (just a year apart..)I guess she

figured she didn't want me to say that again. She was about 11 then. She

tells people about it now---she is 19 yrs & 6'+ tall... goes to college away

from her home .She is very funny anyway , so loves to tell folks . She was

voted " funniest " in her senior class 2 years ago too. I called her the

class clown (but was honor roll as well )

She acts normal ,eats like a teenager . PIZZA, stuff like that BUT, is

doing great being tall & thin. BUT, has VERY strong & Big muscles . She

does cross country running competitively....In high school was first in

school state .. Don't worry about your wee one , Piper..,as much . Just pour

feeding in :):):) hehe

Your doing so well . asking others ,that is wonderful .We all learn from

others trials & error & WINS........You all have a really great weekend

Let me know if I can every help....

Oh, how about a picture of your precious family???

LOVE & HUGS

GRANDMOMBEV

Re: frustrated

Oh Katy,

I can really sympathize with you about the weight thing. We are still

struggling with it. Good for you for being firm about those night feeds.

Have you considered a small bolus feed after dinner? Maybe not every day but

on the days when she didn't eat much? say 2 or 3 times a week? has 6

feeds a week. We always do them after dinner, they last about an hour.

Those bolus feeds might help.

Have you tried DuoCal? your pharmacy can probably order it or maybe the

med supply company. It is a " powdered blend of fat and carbohydrates "

It's a tasteless high cal powder that can be mixed with liquids like milk or

pediasure.

Have they mentioned changing enzymes? Sometimes that helps.

The test they want to do measures how much fat is in the stool. They will

probably have you do a food diary at the same time to figure out how much

fat has been consumed. this should help them to know how much fat she is

absorbing.

Your hubby is probably just frustrated too. Keep rambling, sometimes it

helps!

frustrated

Hi all!! Well Piper had her first annual visit at our CF clinic. It was

certainly an experience. Her doc was not happy with the amount of weight

she had gained. He said that it was cause for concern. He recently

switched her from pregestimil with polycose & microlipid, to pediasure with

scandishake. Well we had trouble with our supply company so we haven't been

able to add the scandishake until today. He suggested that we do night

feeds with a pump, and I gave him a very firm NO. With the problems she has

had in the past couple of months with her nissen, etc, I just didn't feel

comfortable doing that. So he is going to let me try the pediasure with

scandishake for 4-6 weeks, and I will take her in for another weight check.

If it is not a considerable amount then he is going to admit her because he

thinks that there may be more to the problem. I don't know what it could be

though? He said something about having her stool analyzed for fat

absorption, etc.... I am so

frustrated!! Here I thought that we were doing good, she was taking all

her feeds by mouth, and only using her button for meds, and now were back to

where we started. Mu husband is now mad at me for this, like its my fault

that she isn't gaining enough weight, sometimes I wonder if he thinks that

I'm not feeding her or what!!!!

Sorry, for rambling, but I had to get this out!!

Katy

mom to Austin 4 no CF & Piper (turns 1 on Saturday) w/CF

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In a message dated 7/10/2003 9:52:26 PM Eastern Daylight Time,

baileyk80@... writes:

> I wonder if he thinks that I'm not feeding her or what!!!!

>

Its easier for MEN to blame someone - remember I hate men!!!!!!!!!!!!!!!!!!!!

Rosemary in NY with 3 children (12, 10 and 6)

with CF. I have a dog named TOBI and

coined the phrase " BREATHE DAMMIT "

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What is nissen? Traci was on night feeds-but she wouldn't take ANYTHING by

mouth day or night until she was about 18 months. She never took more than 2 oz

in a bottle. It was so frustrating. We were in the hospital every month

because she would get dehydrated. They would put in an NG tube. At 9 months we

put

in the g-tube. Then when we took out her tonsils at 3y/o she started eating

much better. When she went into kindergarten she got her g-tube out. She is 8

years now and still has no g-tube. She still has an up and down eating pattern

but continues to gain weight. She doesn't like sour cream, cream cheese, butter

etc. but loves carrots, peas, asparagus, salad. So the rest of the family is

overweight-we eat the other stuff. LOL

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Rant on!!! I think most of us have been chewed out one time or another over not

enough weight gain. Just keep trying and we'll keep thinking of you and little

Piper.

Dawn mom of 4, 7 and under, the youngest wcf

frustrated

Hi all!! Well Piper had her first annual visit at our CF clinic. It was

certainly an experience. Her doc was not happy with the amount of weight she

had gained. He said that it was cause for concern. He recently switched her

from pregestimil with polycose & microlipid, to pediasure with scandishake.

Well we had trouble with our supply company so we haven't been able to add the

scandishake until today. He suggested that we do night feeds with a pump, and I

gave him a very firm NO. With the problems she has had in the past couple of

months with her nissen, etc, I just didn't feel comfortable doing that. So he

is going to let me try the pediasure with scandishake for 4-6 weeks, and I will

take her in for another weight check. If it is not a considerable amount then

he is going to admit her because he thinks that there may be more to the

problem. I don't know what it could be though? He said s omething about having

her stool analyzed for fat absorption, etc.... I am so

frustrated!! Here I thought that we were doing good, she was taking all her

feeds by mouth, and only using her button for meds, and now were back to where

we started. Mu husband is now mad at me for this, like its my fault that she

isn't gaining enough weight, sometimes I wonder if he thinks that I'm not

feeding her or what!!!!

Sorry, for rambling, but I had to get this out!!

Katy

mom to Austin 4 no CF & Piper (turns 1 on Saturday) w/CF

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The scale is a good idea. When we had trouble with Patti's weight we kept a

food diary (on our own) and weighed her at the same time every day. It helped

me to know that I was doing everything I could. It also kept others from

thinking I wasn't doing anything. :-)

Dawn mom of 4, 7 and under, the youngest wcf

Re: Re: frustrated

,

Piper got her tube when she was in the hospital in November, at the time it

was great, but even with the button she still didn't gain much weight. Just

recently she started taking all of her feeds by mouth and it was wonderful. My

and my husbands family were more willing to keep her for us since she wasn't

doing her tube feeds.

The only thing with night feeds is that she is very active in her sleep, and

I'm afraid that she might pull it out, or get twisted up in the tube itself.

She also has a nissen that she has partially " blown " , she has a hernia at the

site and I don't want it to herniate anymore, because it would require surgery

to fix. Yes she was on Reglan, but since she started taking her feeds by mouth

we haven't needed it. They found that when they did her upper GI that she

wasn't refluxing anymore.

Her enzyme dose is maxed, she in on the Creon 5 with a max of 14 per day.

Thank you for reassuring me that it is not my fault, but I can't help but feel

that way because her eating is totally up to me. I do make sure that she gets

all the feeds per day that they require, but apparently that isn't't enough. I

am so worn out with all of this, and it hasn't even been a year since her

diagnosis, please tell me that it gets better!!!

The scale thing isn't a bad idea, one that I haven't thought of, thank you!!

Thanks again!!

Katy

mom to Austin 4 no CF & Piper (1 on Saturday) w/CF

" J. " wrote:

I have definitely been in your shoes. Ashton got his g-tube when he

was a year old and we love it. He is in the 25th percentil for his

actual age. Unfortunately, that is the only way he gets any food. He

refuses to eat by mouth but he never was interested in food and he

was also 11 weeks premature so there are other issues going on. How

about giving her a teaspoon of canola oil at every feeding? Every

teaspoon has 40 calories. It is a quick and easy way to boost some

calories.

As for night feeds, have you tried (you probably have) starting her

night feed right after you put her to bed and letting it run until

maybe 2am? And have they tried Reglan to keep vomiting to a

minimum? It worked like a charm for us. And Polycose was actually

bad for our son--it slows digestion and made it hard for his stomach

to empty which increased his vomiting.

Are you maxing out on enzymes? We had to use the highest dose in

order for it to work. He is on Viokase, the powder enzyme.

And finally, it is not your fault. It is just something that happens

to some CF kids and it sucks. I finally bought a nice digital infant

scale (from ebay I think) and we weight Ashton at night so we know

where we are at. It helps me tremendously know what is happening

with his weight.

Good luck.

mom to Ashton, 2 with CF

> Hi all!! Well Piper had her first annual visit at our CF clinic.

It was certainly an experience. Her doc was not happy with the

amount of weight she had gained. He said that it was cause for

concern. He recently switched her from pregestimil with polycose &

microlipid, to pediasure with scandishake. Well we had trouble with

our supply company so we haven't been able to add the scandishake

until today. He suggested that we do night feeds with a pump, and I

gave him a very firm NO. With the problems she has had in the past

couple of months with her nissen, etc, I just didn't feel comfortable

doing that. So he is going to let me try the pediasure with

scandishake for 4-6 weeks, and I will take her in for another weight

check. If it is not a considerable amount then he is going to admit

her because he thinks that there may be more to the problem. I don't

know what it could be though? He said something about having her

stool analyzed for fat absorption, etc.... I am so

> frustrated!! Here I thought that we were doing good, she was

taking all her feeds by mouth, and only using her button for meds,

and now were back to where we started. Mu husband is now mad at me

for this, like its my fault that she isn't gaining enough weight,

sometimes I wonder if he thinks that I'm not feeding her or what!!!!

> Sorry, for rambling, but I had to get this out!!

>

> Katy

> mom to Austin 4 no CF & Piper (turns 1 on Saturday) w/CF

>

>

>

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A nissen is a procedure that they do when a child has severe reflux. They take

the top part of the stomach and wrap it around the bottom part of the esophagus

to make the valve tighter so that they can't reflux or throw up. Sometime it

works, other times children can " blow " it through. So far the nissen has been

very good for Piper, her reflux was really bad, she couldn't keep anything down

even with reflux meds (zantac & reglan).

Katy

Patpatstoo@... wrote:

What is nissen? Traci was on night feeds-but she wouldn't take ANYTHING by

mouth day or night until she was about 18 months. She never took more than 2 oz

in a bottle. It was so frustrating. We were in the hospital every month

because she would get dehydrated. They would put in an NG tube. At 9 months we

put

in the g-tube. Then when we took out her tonsils at 3y/o she started eating

much better. When she went into kindergarten she got her g-tube out. She is 8

years now and still has no g-tube. She still has an up and down eating pattern

but continues to gain weight. She doesn't like sour cream, cream cheese, butter

etc. but loves carrots, peas, asparagus, salad. So the rest of the family is

overweight-we eat the other stuff. LOL

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  • 5 years later...

,

Hi my name is Greg I was diagnoised in June 2008 with

Neurosarcoidosis. I have an appt. at UTSW (University of Texas SW) on

04-08-09. They have done lots of work on sarcoidosis. If I find they

have successful treatments then I will be happy to share the results

with you everybody in the group. Until then I wish you evrybody elesed

Blessed and pain-free days.

Greg

>

> hi everyone thank you for letting in to the group i actually thought

i was alone in this world with a rare case of neurosarcoidosis.  I live

in the US and i was diagnosed around year 2000. devastated but i

handled it but it has been going up and down since then treatment works

until they tamper me off the steroids and everything flares up with

damaging results.  the latest is seizure three back to back.  Now i

really can't do anything not even work or live alone.  If anybody knows

a treatment that's been successful can you please let me know.

>

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