Re: question PLEASE HELP

[Guest guest]

Moique,

I really don't have any suggestions at this point but I can really

sympathize. I went through this with my son Josh now 9. We didn't know he

had CF until he was 3 and what you describe with Liam is exactly what I went

through. I know it is a very difficult situation and sleep deprivation is

awful. I even left the car in drive once in the garage and got out of the

car and in crashed into the wall. Yikes!!!

Sometimes I would just beg someone to take him for the two hours between

feeds just so I knew I would get 2 hours of sleep. There were days I never

even got dressed because I just slep every moment he did.

But I survived and he is now 9 and sleeps through the night. He didn't sleep

until we found out he had Cf and we got him on the enzymes. Hang in there.

Mom to Josh 9 wcf & Crohn's and 4 nocf but wants to do

therapy for his brother.

[Guest guest]

IS THIS OK TO LEAVE A CF BABY TO SCREAM, IS IT OK FOR THE LUNGS??

Hi ,

Silke had quite a discussion with her mom-in-law about this. My mom

thinks that babies have to scream to improve their lungs. Well, we

never bought that story and comforted Fiona when she began to cry.

Fiona's bed stood right beside Silke's bed, so she didn't have to

stand up. Don't know if Fiona slept so well because she was always so

close to us or if we were just lucky. Sleep deprivation is a serious

problem, so do at least get yourself some sleep during the day and

don't feel bad about doing that.

Peace

Torsten, dad of Fiona 6wcf

[Guest guest]

,

When I breastfed JC, I finally started letting him sleep with me. Then when

he woke up, I could roll over, stick a breast in his mouth and go back to

sleep. He slept better, I slept better. I know this isn't for everyone,

but it was what worked for me. Breastfed babies should be fed on demand,

not put on a schedule. Try different types of bottles, the Avent ones

worked for me, they are supposed to be closest to the breast. And let your

husband give him the bottle. JC would not take a bottle from me (he wanted

the REAL thing) but he would take it from anyone else.

Just some thoughts. Hope this helps.

Angie P. (Ma to JC, 3yo, wcf)

question PLEASE HELP

> Hi all

> Well its me again, I am having so much truble with Liam at night he is

waking 3-5 times a night, crying or hungery or got a burp, normally its once

a night for a feed. I have had 3 weeks of this and I am at my ends wits, I

cannot cope anymore, I even phoned a help line becuase i was scared that I

might hurt Liam. I feel like a vulcano about to explode. I am going to a

sleep and eating clinic with Liam on monday for a week, they are really into

routines and structure. He is basically demand breast feed and eats little

amounts of solids maybe 1/4 cup per day. He snacks all the time. Anyway

the only way he will go to sleep is if I feed him to sleep, I am so had it.

>

> Questions

> For the last 2 days I have feed him then he played and when he got grumpy

I put him to bed with his dummy and he screamed and screamed for about 2

hours off and on. I go in and check him and then leave again.

>

> IS THIS OK TO LEAVE A CF BABY TO SCREAM, IS IT OK FOR THE LUNGS??

>

> At the sleep clinic they will make Liam only have 3-4 breastfeeds a day

and 3 solids. Is this OK, arnt CF kids meant to have many snacks in the

day? or is this for older children? I feed him about 7-8 times a day

currently this includes night and to sleep feeds.

>

> I am so worn out, he wont take a bottle from anyone even me, I cannot go

out and leave him with anyone because he needs my breasts to much, typical

boy!! HAHAH, at least I can still laugh. I nned to get some life back, My

husband and I havent even been out anywhere since he was born and we

desperatly need to get out together, we would love to go to the movies or

out for coffee.

>

> I just had a plucket nurse come and see me today, she is also my old CF

nurse which is great. She told me to give him his solids before a breast

feed now, I didnt know that and so I did that today, she also gave me a

routine to help me till I got to the sleep clinic, hopefully it goes OK.

>

> I am just so sleep deprived and cannot cope anymore I am scared of myself

and what is happening.

>

> mother of Liam 8 months CF and Lily desceased with CF at 8 days

old, 2 and 1/2 years ago. And a wonderful husband who gets up with me in

the night when I feed him for moral support and to help with Liam.

>

>

[Guest guest]

Screaming will not hurt his lungs. It will force air through them. Now your

ears and nerves are another matter. :-) Are you and your hubby willing to

share your bed with Liam? Is Liam willing to sleep in your bed? If so it may

be the easiest road to sleeping and night feeding for you.

Kids are so different. I have four and none of them are the same when it comes

to sleeping, except they like to wake with the sun. My oldest will get in bed

with us in the middle of the night for about 10-15 minutes and then she will go

back to her bed. My son (6) loves to snuggle with us on a weekend morning, but

literally can't fall or stay asleep with anyone else in bed with him. My four

year old would live in our bed if we let her. Patti (2 wcf) likes to nap in our

bed, but won't sleep in it at night.

Sometimes I enjoy the kids sleeping with us and sometimes I don't. When my

four year old was a baby, we put her in our bed when she was around 8 months old

in order to get sleep. She was bottle fed and it was nice just to warm up the

bottle and take it back to bed, prop up with her and just go back to sleep. We

tried this with Patti when she was born, but she was a picky nurser and wouldn't

nurse in bed.

Oh well... All of this rambling to let you know that others have been there and

have survived, and so have the kids!! lol My favorite quote from the Bible

(and no it isn't religious, except for the way I religiously cling to it) is

" And it came to pass... " This too will pass for you and you will be able to

help other young mothers in the same predicament. We love you, keep your chin

up and do what you have to do to get some sleep.

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

[Guest guest]

Hi,

Does your son have reflux?

My daughter had terrible reflux and I was up sometimes 5-8 times a night with

her before she was dx w/cf and reflux. Aside from the reflux meds needed

to sleep in a more upright position. She had a bouncer and a rocking chair w/ a

kickstand so it would stay still. She slept in one of these inside her crib.

If she was flat on her back the reflux was a lot worse.

I didn't let scream at night or naptime because it made me too upset. I

needed to comfort her and she needed me to comfort her. Also, if she screamed

she would cough and throw up. I was not rigid with feeds (even though I was

unable to breastfeed) she was fed when she was hungry and slept when she was

tired. She didn't sleep through the night consistently until she was about two

years old. (I think that was due to the fact that every time she was close to

sleeping through she would get sick and end up back in the hospital-and they

come in and disturb you all the time in there.) Good luck to you in your quest

for sleep.

question PLEASE HELP

> Hi all

> Well its me again, I am having so much truble with Liam at night he is

waking 3-5 times a night, crying or hungery or got a burp, normally its once

a night for a feed. I have had 3 weeks of this and I am at my ends wits, I

cannot cope anymore, I even phoned a help line becuase i was scared that I

might hurt Liam. I feel like a vulcano about to explode. I am going to a

sleep and eating clinic with Liam on monday for a week, they are really into

routines and structure. He is basically demand breast feed and eats little

amounts of solids maybe 1/4 cup per day. He snacks all the time. Anyway

the only way he will go to sleep is if I feed him to sleep, I am so had it.

>

> Questions

> For the last 2 days I have feed him then he played and when he got grumpy

I put him to bed with his dummy and he screamed and screamed for about 2

hours off and on. I go in and check him and then leave again.

>

> IS THIS OK TO LEAVE A CF BABY TO SCREAM, IS IT OK FOR THE LUNGS??

>

> At the sleep clinic they will make Liam only have 3-4 breastfeeds a day

and 3 solids. Is this OK, arnt CF kids meant to have many snacks in the

day? or is this for older children? I feed him about 7-8 times a day

currently this includes night and to sleep feeds.

>

> I am so worn out, he wont take a bottle from anyone even me, I cannot go

out and leave him with anyone because he needs my breasts to much, typical

boy!! HAHAH, at least I can still laugh. I nned to get some life back, My

husband and I havent even been out anywhere since he was born and we

desperatly need to get out together, we would love to go to the movies or

out for coffee.

>

> I just had a plucket nurse come and see me today, she is also my old CF

nurse which is great. She told me to give him his solids before a breast

feed now, I didnt know that and so I did that today, she also gave me a

routine to help me till I got to the sleep clinic, hopefully it goes OK.

>

> I am just so sleep deprived and cannot cope anymore I am scared of myself

and what is happening.

>

> mother of Liam 8 months CF and Lily desceased with CF at 8 days

old, 2 and 1/2 years ago. And a wonderful husband who gets up with me in

the night when I feed him for moral support and to help with Liam.

>

>

[Guest guest]

Have you tried giving him a little Benadryl? It is perfectly safe

for babies and usually helps them sleep. Maybe try it a few times

and get back into a good schedule.

We were always told that it is more important to have breastmilk than

the solids--for all the fat and protein. Have you added oil or

butter to his solids? That may fill him up a bit more and give him

more fat at the same time.

A little nightlight in his room may help too. Or some soft music?

As for not wanting to bottle beed, have you tried a sippy cup? Or

one of those bottles that is shaped like a REAL breast? They sell

them on babycenter.com I think or maybe on www.babiesrus.com.

The trick to sleep is a schedule. A ritual before bedtime (reading,

rocking, a video, CPT, bath, etc) and then being consistent about

it. Our son always goes to bed at 8pm and wakes up around 6:45 am

(he is 2 now). He always naps from 12:30-3pm. No matter what we

have scheduled, I make sure we come home in time to put him to bed

for his nap and for the night.

Hope this helps!!

> Hi all

> Well its me again, I am having so much truble with Liam at night he

is waking 3-5 times a night, crying or hungery or got a burp,

normally its once a night for a feed. I have had 3 weeks of this and

I am at my ends wits, I cannot cope anymore, I even phoned a help

line becuase i was scared that I might hurt Liam. I feel like a

vulcano about to explode. I am going to a sleep and eating clinic

with Liam on monday for a week, they are really into routines and

structure. He is basically demand breast feed and eats little

amounts of solids maybe 1/4 cup per day. He snacks all the time.

Anyway the only way he will go to sleep is if I feed him to sleep, I

am so had it.

>

> Questions

> For the last 2 days I have feed him then he played and when he got

grumpy I put him to bed with his dummy and he screamed and screamed

for about 2 hours off and on. I go in and check him and then leave

again.

>

> IS THIS OK TO LEAVE A CF BABY TO SCREAM, IS IT OK FOR THE LUNGS??

>

> At the sleep clinic they will make Liam only have 3-4 breastfeeds a

day and 3 solids. Is this OK, arnt CF kids meant to have many snacks

in the day? or is this for older children? I feed him about 7-8

times a day currently this includes night and to sleep feeds.

>

> I am so worn out, he wont take a bottle from anyone even me, I

cannot go out and leave him with anyone because he needs my breasts

to much, typical boy!! HAHAH, at least I can still laugh. I nned to

get some life back, My husband and I havent even been out anywhere

since he was born and we desperatly need to get out together, we

would love to go to the movies or out for coffee.

>

> I just had a plucket nurse come and see me today, she is also my

old CF nurse which is great. She told me to give him his solids

before a breast feed now, I didnt know that and so I did that today,

she also gave me a routine to help me till I got to the sleep clinic,

hopefully it goes OK.

>

> I am just so sleep deprived and cannot cope anymore I am scared of

myself and what is happening.

>

> mother of Liam 8 months CF and Lily desceased with CF at 8

days old, 2 and 1/2 years ago. And a wonderful husband who gets up

with me in the night when I feed him for moral support and to help

with Liam.

>

>

[Guest guest]

Just wanted to tell you I think those are some really great worth

while ideas. Al, of which I am sure someone is saying, Yep.that worked

for me. It is so great how all just pop in with such good thinking. Hope

all is well .

LOVE & HUGS,

GrandmomBEV

Re: question PLEASE HELP

Have you tried giving him a little Benadryl? It is perfectly safe

for babies and usually helps them sleep. Maybe try it a few times

and get back into a good schedule.

We were always told that it is more important to have breastmilk than

the solids--for all the fat and protein. Have you added oil or

butter to his solids? That may fill him up a bit more and give him

more fat at the same time.

A little nightlight in his room may help too. Or some soft music?

As for not wanting to bottle beed, have you tried a sippy cup? Or

one of those bottles that is shaped like a REAL breast? They sell

them on babycenter.com I think or maybe on www.babiesrus.com.

The trick to sleep is a schedule. A ritual before bedtime (reading,

rocking, a video, CPT, bath, etc) and then being consistent about

it. Our son always goes to bed at 8pm and wakes up around 6:45 am

(he is 2 now). He always naps from 12:30-3pm. No matter what we

have scheduled, I make sure we come home in time to put him to bed

for his nap and for the night.

Hope this helps!!

> Hi all

> Well its me again, I am having so much truble with Liam at night he

is waking 3-5 times a night, crying or hungery or got a burp,

normally its once a night for a feed. I have had 3 weeks of this and

I am at my ends wits, I cannot cope anymore, I even phoned a help

line becuase i was scared that I might hurt Liam. I feel like a

vulcano about to explode. I am going to a sleep and eating clinic

with Liam on monday for a week, they are really into routines and

structure. He is basically demand breast feed and eats little

amounts of solids maybe 1/4 cup per day. He snacks all the time.

Anyway the only way he will go to sleep is if I feed him to sleep, I

am so had it.

>

> Questions

> For the last 2 days I have feed him then he played and when he got

grumpy I put him to bed with his dummy and he screamed and screamed

for about 2 hours off and on. I go in and check him and then leave

again.

>

> IS THIS OK TO LEAVE A CF BABY TO SCREAM, IS IT OK FOR THE LUNGS??

>

> At the sleep clinic they will make Liam only have 3-4 breastfeeds a

day and 3 solids. Is this OK, arnt CF kids meant to have many snacks

in the day? or is this for older children? I feed him about 7-8

times a day currently this includes night and to sleep feeds.

>

> I am so worn out, he wont take a bottle from anyone even me, I

cannot go out and leave him with anyone because he needs my breasts

to much, typical boy!! HAHAH, at least I can still laugh. I nned to

get some life back, My husband and I havent even been out anywhere

since he was born and we desperatly need to get out together, we

would love to go to the movies or out for coffee.

>

> I just had a plucket nurse come and see me today, she is also my

old CF nurse which is great. She told me to give him his solids

before a breast feed now, I didnt know that and so I did that today,

she also gave me a routine to help me till I got to the sleep clinic,

hopefully it goes OK.

>

> I am just so sleep deprived and cannot cope anymore I am scared of

myself and what is happening.

>

> mother of Liam 8 months CF and Lily desceased with CF at 8

days old, 2 and 1/2 years ago. And a wonderful husband who gets up

with me in the night when I feed him for moral support and to help

with Liam.

>

>

[Guest guest]

VERY good point!!! , please do talk to your doctor about reflux if

you haven't already. It is a horrible thing to have, and very common,

unfortunately, in our little guys (and girls!). With Cody's reflux, we

couldn't even burp him after a feed, because we literally couldn't move him

whatsoever, or he'd barf everywhere. But, reflux can be much more

mild--more like mine. It just feels constantly like I have a burning

sensation in my throat/esophagus, and is very uncomfortable. It sometimes

gets so bad it feels like a crushing pain in my chest, and until I suck down

some liquid Mylanta, I'm miserable!! I have a dr. appt. tomorrow morning at

11:00 for it, thank goodness!! I'm hoping they give me Nexium.

Good luck with Liam, and remember, like Dawn said, " this too shall

pass " --sometimes not soon enough, though!!

S., mom to Cody (7, pwcf), DJ (8, nocf), and a (14, nocf)

question PLEASE HELP

>

>

> > Hi all

> > Well its me again, I am having so much truble with Liam at night he is

> waking 3-5 times a night, crying or hungery or got a burp, normally its

once

> a night for a feed. I have had 3 weeks of this and I am at my ends

wits, I

> cannot cope anymore, I even phoned a help line becuase i was scared that

I

> might hurt Liam. I feel like a vulcano about to explode. I am going to

a

> sleep and eating clinic with Liam on monday for a week, they are really

into

> routines and structure. He is basically demand breast feed and eats

little

> amounts of solids maybe 1/4 cup per day. He snacks all the time.

Anyway

> the only way he will go to sleep is if I feed him to sleep, I am so had

it.

> >

> > Questions

> > For the last 2 days I have feed him then he played and when he got

grumpy

> I put him to bed with his dummy and he screamed and screamed for about 2

> hours off and on. I go in and check him and then leave again.

> >

> > IS THIS OK TO LEAVE A CF BABY TO SCREAM, IS IT OK FOR THE LUNGS??

> >

> > At the sleep clinic they will make Liam only have 3-4 breastfeeds a

day

> and 3 solids. Is this OK, arnt CF kids meant to have many snacks in the

> day? or is this for older children? I feed him about 7-8 times a day

> currently this includes night and to sleep feeds.

> >

> > I am so worn out, he wont take a bottle from anyone even me, I cannot

go

> out and leave him with anyone because he needs my breasts to much,

typical

> boy!! HAHAH, at least I can still laugh. I nned to get some life back,

My

> husband and I havent even been out anywhere since he was born and we

> desperatly need to get out together, we would love to go to the movies

or

> out for coffee.

> >

> > I just had a plucket nurse come and see me today, she is also my old

CF

> nurse which is great. She told me to give him his solids before a

breast

> feed now, I didnt know that and so I did that today, she also gave me a

> routine to help me till I got to the sleep clinic, hopefully it goes OK.

> >

> > I am just so sleep deprived and cannot cope anymore I am scared of

myself

> and what is happening.

> >

> > mother of Liam 8 months CF and Lily desceased with CF at 8

days

> old, 2 and 1/2 years ago. And a wonderful husband who gets up with me

in

> the night when I feed him for moral support and to help with Liam.

> >

> >

[Guest guest]

First of all, I can so TOTALLY empathize with you!!!!!!!!!!!!!! Cody was

not a good sleeper at ALL for his first five years--worst from birth to

about 1 year. He had severe reflux, and was a very reluctant feeder (just

never seemed to feel hunger--still doesn't for HOURS), so we had to feed him

every 2 hours. It would take an hour just to coax 1-2 ounces down him, then

he'd (we'd) have an hour break, and back to it again. This was 24/7 for

about 8 months, then we finally got him up to eating 3 ounces every 2 hours,

and letting him sleep for a 4-hour shot twice at night. I was SOOO

sleep-deprived that I didn't think I'd make it through some days. And

because of the reflux, Cody would cry and cry and CRY!!! I sometimes had to

just put him in his crib and let him cry and take DJ outside to play for a

bit because I was starting to lose my mind. It's better to do that if you

feel that you may lose your temper, than to stick around and try to deal

with it and take a chance in hurting the baby. It gives you both a break,

and lets you get your mindset back, so you are better able to comfort him

and give him the love and acceptance he needs.

And I have to say, as great as a Dad my husband is, he did sh-- for those

months with the night feeds!!!! NOTHING!!!!!!!!!! He would help when he

was awake and home from work (which wasn't much!), then had the attitude

that " I work during the day, I need to get some sleep! " , even during the

1-1/2 months of seasonal layoff he had during that time. Meanwhile, I had

another very small child and a 1st grader, along with going to college

full-time for the first five months of Cody's life (finished both of my

degrees that spring, thank GOD!!!). And he wondered why dinner wasn't on

the table when he came home at night!! He was quite a child during that

time (talking about my husband there!)!!! He is SOOOOOOOO much better now!!

He got laid off for a few months that following winter for seasonal layoff

(we had a LOOOOOTTTTT of snow that winter), and we had a LOT of fights about

his behavior, and started seeing a counselor. The counselor advised that I

find things I like to do and LEAVE him with the kids, so he can see it's not

as easy as he thinks, and that it's not all " sitting on the couch, eating

bon-bons and watching the soaps " . He is a doll now, most of the time. He

has his moments, just like all of us, BUT, at least he always gets up with

the dogs when they have to potty at night!!!!!!!!!! LOL LOL

S., mom to Cody (7, pwcf), DJ (8, nocf), and a (14, nocf)

question PLEASE HELP

> Hi all

> Well its me again, I am having so much truble with Liam at night he is

waking 3-5 times a night, crying or hungery or got a burp, normally its once

a night for a feed. I have had 3 weeks of this and I am at my ends wits, I

cannot cope anymore, I even phoned a help line becuase i was scared that I

might hurt Liam. I feel like a vulcano about to explode. I am going to a

sleep and eating clinic with Liam on monday for a week, they are really into

routines and structure. He is basically demand breast feed and eats little

amounts of solids maybe 1/4 cup per day. He snacks all the time. Anyway

the only way he will go to sleep is if I feed him to sleep, I am so had it.

>

> Questions

> For the last 2 days I have feed him then he played and when he got grumpy

I put him to bed with his dummy and he screamed and screamed for about 2

hours off and on. I go in and check him and then leave again.

>

> IS THIS OK TO LEAVE A CF BABY TO SCREAM, IS IT OK FOR THE LUNGS??

>

> At the sleep clinic they will make Liam only have 3-4 breastfeeds a day

and 3 solids. Is this OK, arnt CF kids meant to have many snacks in the

day? or is this for older children? I feed him about 7-8 times a day

currently this includes night and to sleep feeds.

>

> I am so worn out, he wont take a bottle from anyone even me, I cannot go

out and leave him with anyone because he needs my breasts to much, typical

boy!! HAHAH, at least I can still laugh. I nned to get some life back, My

husband and I havent even been out anywhere since he was born and we

desperatly need to get out together, we would love to go to the movies or

out for coffee.

>

> I just had a plucket nurse come and see me today, she is also my old CF

nurse which is great. She told me to give him his solids before a breast

feed now, I didnt know that and so I did that today, she also gave me a

routine to help me till I got to the sleep clinic, hopefully it goes OK.

>

> I am just so sleep deprived and cannot cope anymore I am scared of myself

and what is happening.

>

> mother of Liam 8 months CF and Lily desceased with CF at 8 days

old, 2 and 1/2 years ago. And a wonderful husband who gets up with me in

the night when I feed him for moral support and to help with Liam.

>

>

[Guest guest]

Hi

I hear your frustration and pain as I went through the same with my

daughter. I didn't sleep through the night until she was 16-17

months old. Primarily for the reason that I was breastfeeding her

and she would get up 1-2x per night to feed. Some nights were worse

than others and I would drag myself out of bed like a zombie from the

night of the living dead (might I add I looked the part too)and

carried out my duty as her mother. I never truly believed in the

motherly instinct until I had my own child and I swear it was

instinct that kept me going because there was nothing else left. But

our bodies reward us for the work we do, I say this because I would

get so frustrated and angry that I had to nurse my baby AGAIN and as

soon as we settled down, within minutes a calmness resided over me

and I too became just as relaxed as my child as she nursed. And I

would catnap while she did.

Hang in there because it will get better. Keep Liam on the breast

for as long as you can IT IS THE BEST FOOD FOR HIM and you will see

that it is because his health will reflect it. Remember that your

attitude will be passed on to your child's especially while you are

breastfeeding. They sense the tension and anger as if it was their

own because of the bond you have with them. I had to continually

remind myself of this and this reminder was sometimes the only thing

that would calm me down. My child is only responding on a very basic

level and doesn't do anything intentionally to make my day worse.

You are doing a great job and a damn hard one might I add.

Grayce is still breastfed about 6x/day and eats solids 2-3x/day(all

vegetarian fare) and she hasn't been hospitalized, or on antibiotics,

recovered from all her colds without meds, and continues to thrive.

She is 20months and is a picture of health and I owe it all to breast

milk. She had reflux I conquered it with aloe vera juice and most

importantly because I was nursing her I needed to make my diet as

pure as possible as she was eating what I was eating. This made a

huge difference in both of us.

you have the skills, knowledge and the love to get through

this and Liam will thank you for it.

Thinking of you and sending you some great big energy balls

> Hi all

> Well its me again, I am having so much truble with Liam at night he

is waking 3-5 times a night, crying or hungery or got a burp,

normally its once a night for a feed. I have had 3 weeks of this and

I am at my ends wits, I cannot cope anymore, I even phoned a help

line becuase i was scared that I might hurt Liam. I feel like a

vulcano about to explode. I am going to a sleep and eating clinic

with Liam on monday for a week, they are really into routines and

structure. He is basically demand breast feed and eats little

amounts of solids maybe 1/4 cup per day. He snacks all the time.

Anyway the only way he will go to sleep is if I feed him to sleep, I

am so had it.

>

> Questions

> For the last 2 days I have feed him then he played and when he got

grumpy I put him to bed with his dummy and he screamed and screamed

for about 2 hours off and on. I go in and check him and then leave

again.

>

> IS THIS OK TO LEAVE A CF BABY TO SCREAM, IS IT OK FOR THE LUNGS??

>

> At the sleep clinic they will make Liam only have 3-4 breastfeeds a

day and 3 solids. Is this OK, arnt CF kids meant to have many snacks

in the day? or is this for older children? I feed him about 7-8

times a day currently this includes night and to sleep feeds.

>

> I am so worn out, he wont take a bottle from anyone even me, I

cannot go out and leave him with anyone because he needs my breasts

to much, typical boy!! HAHAH, at least I can still laugh. I nned to

get some life back, My husband and I havent even been out anywhere

since he was born and we desperatly need to get out together, we

would love to go to the movies or out for coffee.

>

> I just had a plucket nurse come and see me today, she is also my

old CF nurse which is great. She told me to give him his solids

before a breast feed now, I didnt know that and so I did that today,

she also gave me a routine to help me till I got to the sleep clinic,

hopefully it goes OK.

>

> I am just so sleep deprived and cannot cope anymore I am scared of

myself and what is happening.

>

> mother of Liam 8 months CF and Lily desceased with CF at 8

days old, 2 and 1/2 years ago. And a wonderful husband who gets up

with me in the night when I feed him for moral support and to help

with Liam.

>

>

[Guest guest]

,

Is your baby taking enzymes yet? If not, it may be constant hunger

and stomach aches that he's suffering with. Most children with cf

are pancreatic sufficient when first born, but that slowly (or

sometimes not-so-slowly) changes for most of them over time and they

need enzymes to digest what they take in.

I know that breastfed babies can have soft poops, and that babies

starting new solids can have odd poops, and if you haven't seen what

goes on in the diapers of other babies, you might not recognize

subtle signs of malabsorption right away. Especially if you are too

sleep-deprived to think straight! If he's not getting any enzymes

yet, it may be time to start. I know that some people would disagree

and say that enzymes are not required with breast milk, but I don't

think that is always the case. I would guess that many breastfed

babies with cf just happen to be weaned at the same time that they

begin to become pancreatic insufficient. Ask the baby's cf doctor.

Mention that you are losing your mind.

I hope you get some sleep soon!

~

> Hi all

> Well its me again, I am having so much truble with Liam at night he

is waking 3-5 times a night, crying or hungery or got a burp,

normally its once a night for a feed. I have had 3 weeks of this and

I am at my ends wits, I cannot cope anymore,