need advice

[amber682]

Maybe some of you who have children can give me some suggestions.
Vinny recently started refusing to take his Creon. If he's not in
the highchair, he runs and hides with his face to the floor. If he
is in the highchair or on my lap, he keeps spitting it all out.
I've tried using more applesauce, and tried using less. I have to
gently squeeze his cheeks to get him to open his mouth, then I have
to sort of hold it closed. He still manages to spit most of it out.
I've even tried gently blowing in his face, because this usually
makes a baby swallow, but he only swallows a little, and out comes
the rest. Sometimes he thinks its funny, so I don't laugh and I
tell him no, and just a few more bites. But most of the time he
really gets upset. I'm afraid I'm gonna traumatize the kid! I even
tried just creon on the spoon, no applesauce. (Bad idea!) I tried
getting him to just swallow the pill whole and then a drink, but
even if he swallows the drink, the pill gets spit out.<br>
He really hates getting forced to do anything, and CPT and the neb
are a huge problem already. CPT he just keeps trying to roll away,
no matter what we do, movies, cartoons, toys. As for the neb, I
literally have to hold him on my lap with his arms down by his
sides so he can't rip it out of my hands and throw it. (You should
see the bruises on my thighs from him kicking and digging his heels
in!) And now the Creon too.<br>
I feel awful having to force him to do all these things every day.
He runs and hides and cries when he even sees the nebulizer
 or the pillow I use when doing chest pt. It breaks my heart.
And when he sees me mixing the creon and applesauce, he literally
buries his face so I can't get to his mouth, and holds his mouth
shut. I feel I've tried everything, even putting it in different
foods, to no avail. As soon as he realizes those beads are in
there, he spits it out.<br>
I know all toddlers are just really independant at this age, and
eventually this will pass and not be such a huge ordeal. But any
suggestions in the mean-time would be greatly appreciated!!!<br>
CF sucks and its not fair!!! I hate seeing his big sad teary eyes
when I'm forcing him to swallow something he doesn't like or
forcing him to sit while I pound on him or hold a mask over his
nose and mouth for the neb. It really makes me sad and I'm just
going to post this now because I'm getting teary-eyed just thinking
about it and it's getting hard to see the letters on the
keyboard...<img src="i/expressions/face-icon-small-sad.gif" border="0"><br>
. 

 

[amber682]

sorry that was so long, I guess I just had to get it off my chest!
I just think he's not gonna like me as much cause I'm the one who
does all these treatments and such.

 

[Ratatosk]

Could it be that he's burnt out on applesauce? We always used babyfood bananas 'cuz DS hated the texture of applesauce. I've used grape jelly, chocolate syrup, baby food fruit... See if he'll try something else.

DS did this to us a couple of times, but episodes were short lived. Hopefully this too will just be a brief phase.

As far as the nebs, are there any movies he likes to watch -- when DS was younger we watched Barney or Elmo. Nowdays we either have on cartoons or put one of his movies on the DVD. He STILL likes Little People -- you know those plastic people -- they've made DVD's of them and they really really creep me out, but they keep him happy.

Just checked my journal from when Max was that age -- he discovered my portable DVD player on a trip to the City for his CF appointment and was hypnotised. Was a godsend when doing treatments -- well, except that he had to watch Barney all the time. Bleah!

 

[evan1227]

Our son is 19 months and he refused to take enzymes with everything
we tried...except maple syrup..he seemed to like that...just keep
trying different things until you find something that works....and
CF does suck

 

[blackchameleon]

is 18 months too young to start teaching the kid about bribery?? u
know , things like "if u swallow the creon i will strip naked
and pretend im a cow, moo moo". or something not as silly and
possibly a bit too harsh," swallow the pills or i will cut out
your tongue and grill it for your tea". please dont think i am
serious, what you are experiencing must truly rip at your soul. i
am interested to see what mums post that helped them, surely u cant
be alone on this one? and lastly, the little bugger has obviously
got defiance and determination riddled through him-- great
quality's to own when u have cf!. Blackchameleon

 

[JRPandTJP]

Your post is making me knock on wood and hold my breath all at the same time. I think all toddlers may do this from time to time (I'm sure it is coming for me). I think the ideas to change the appplesauce is a great one. Also, as with anything repetitve and not an option to change (like brushing teeth, baths), what about a reward system. Make a little boy cut out with a picture of his head for the head and let him fill his body with stickers. Maybe tell him a little story about how each sticker shows him what a big boy he is and how good it is for him. When he gets the whole body filled he can pick from a grab bag of goodies (like playdough, cars, trains, anythign he is really into). He can win a trip to the library/store to pick out new video to watch during treatments.

As for CF sucking, I also had a breakdown yesterday with it all. First, on Sunday we attended a picnic my midwife gives every year for her clients. Of course there are new babies (one was 1 week old) and it was so hard to remember how tiny he was when I first brought him to the picnic when he was born and how much happened afterwards. It just really set me back with the whole deciding to have more kids dilema (which I thought I had laid to rest). Well, I was very emotional that night and the next day I pack up and headed out to take him to lunch and get some errands done. I order our food sit down, spread it all out, cool down his soup, go to get the enzymes and I forgot the FU**ERS!!! I was so pissed. Here I am faced with being the only one, probably in the whole F***ING city that has to tell their son, just kidding we are actually packing it up and going home because you can't digest it and mommy is an idiot. I, with tears, in my eyes ask the lady to give me some to go boxes and try not to watch the lady with her toddler next to us wondering why I am doing this. I finally got it all packed up and left. Then he, being a funny 2 year old tucks himself back in the way back of the caravan and won't get in his seat. My blood was boiling and I go to open the back hatch and the stinker jumps the seat. Here I am grabbing his foot and pulling him over the seat ready to explode. I finally get him strapped in and I just let the flood gates open. What can you do? I mean most the time we just think of all this stuff we do as part of our routines. But once in a while, it just hits you that not too many people understand what CF feels like sometimes!

You're not alone on this ride through toddler years and CF. I totally hear you and understand. I could have use a CF punching bag yesterday...hey that is a really good idea.

Hang in there...be pissed, get it out and then get creative with him. It is all about out witting the stinkers and making them think they are in control a little bit.

Jody

 

[babyjaden2004]

We have been lucky with Jaden but I puree (sp?) her applesauce and sometimes buy babyfood pears for a change. As far as the neb treatments use the carseat, works like a charm, strap him in and maybe put on a fav movie or something. Jaden fought while doing them but atleast I wasn't holding her and she wasn't running away. CPTs we still fight some but we put in Spongebob and she is ok. I wish you luck and HUGS to you.

 

[mneville]

My son is 23 months old and he went through a terrible stage of
refusing the Creon. It was not fun, we had to force him all the
time. We did not use applesauce as he did not like it. We used
everything from baby food to whipped cream.<br>
We have since discovered that he can swallow the pills whole- 4 at
a time! We get a straw that is larger than most (Starbucks has
them) and put all 4 pills in the top of the straw. He swallows them
whole when he takes a sip of the water. It works like a charm! Hope
that helps... Megan,mom to Aidan, Double Delta CF

 

[ehtansky21]

at one point, when ethan was like that, we made sure to get the enzymes down him away from the dinner table so he didn't associate that fight with the joy of eating. i find distraction works really well. I would catch him while he was watching a good tv show or while he was engrossed in playing with a cool toy. it sounds like you need to distract him while you are getting the enzymes ready, since that gets him started. i also made sure to have water ready right after he took the enzymes, to ensure that they went down and didn't end up in his cheeks.

 

[amber682]

Thank you guys so much for the suggestions (and understanding). For
some reason I'm crying right now reading these, so I may mess up a
little with my typing.<br>
     I've tried quite a few foods with the
creon, I'll have to just keep trying til I find something he really
likes a lot. Its funny, we used to use baby bananas all the time,
he loves them. I thought he was sick of those so I tried other baby
fruits and applesauce. It seems like no matter how much he likes
the food he spits it out if he feels a couple of those beads. I
never thought of maple syrup!<br>
     I liked the idea about the wide
straw. I tried today just putting the creon in his mouth and
then a drink from a straw, but maybe putting one right in the end
of the straw could trick him. I think I'll try it tomorrow, but one
at a time.<br>
    I do agree maybe I should not do the creon
fight at the dinner table because I don't want that associated with
eating food. When he was younger he hated eating baby food off a
spoon from me, and I always thought it was because he thought I was
going to give him creon.<br>
    As far as bribing, I wish he was old
enough! Maybe a few more months. (And Black, you crack me up!) He
certainly is quite determined and defiant.  His
grandparents are always saying how determined he is when he's got
his mind set on what he wants, or doesn't want, to do! I call him a
little bugger a lot. I often wish he understood when I tell
him things like just one more tiny bite and we can go outside and
play, but he doesn't seem to get it quite yet. He's at a tough
stage where he's older and wants to be really independent and
do what he wants, but he's still so young that he doesn't
understand when I try to explain things to him.<br>
    I'm glad to know I'm not the only one who
has the occasional break down. I have a punching bag (well actually
my hubby does) and I should put a big cf sticker on it and beat the
sh*t out of it once in a while. I get sad when I'm visiting my
friends who have young children, or my sister who has a baby one
month younger than Vinny. I see how it should be, no hours of CPT
and nebs and a counter full of med bottles. Just feed em and thats
it, no pills. Just put em to bed or down for a nap, no PT first.
 Just get em dressed and go outside and play, no worrying
about which meds to do and before or after we play, etc. It's not
fair to him to have to do all that. Yesterday he was really
fighting me with the neb( he has to do a lot lately because of an
exacerbation) and he was on my lap so I could kind of hold him
still. He started really squirming and was digging his feet into my
thighs, he actually left bruises. And I was so frustrated I sort of
yelled "You're hurting me!" in a mad way. He stopped
fighting me and just layed back and cried a really sad cry because
I think I scared him. Then I cried because its not really him I'm
frustrated with, but that I have to do all this crap to him on a
daily basis and I HATE IT!     
 I don't  hate that I have to do it, but that he has
to take it. And when he just gives up on fighting and accepts
something it makes me sad too. I don't really know why, I guess I
feel like I'm breaking his spirit or something. And I hate
thinking about the future because that just plain ol scares me. I
know a lot about possible future meds and life expectancy and all
the hopes for cf'ers futures, but I'm still real scared.  This
disease breaks my heart.  <br>
    Thank you all so much, but I have to stop
writing because now I'm really crying and have to go blow my nose
and wipe my eyes and get myself back together. CF clinic follow- up
appt tomorrow and the kid is still coughing, over a month now, on
all sorts of meds, so I hope he's not admitted but if thats
what it takes to clear up this problem lets just get it over with
and stop any lung damage from occurring. I will keep you posted and
thanks again. <br>
    <br>
    

 

[Di]

Amber, I have a 10 month old with CF and he is also a determined and headstrong little boy.  He also rejects his enzymes, and occasionally spits them out too, not all the time but again, he is only 10 months.  I feel like your posting could have been written by me, although I don't think I could have expressed the feelings as well as you have, so good for you.  I am bawling my eyes out reading this and just wanted to say, I understand you completely.  I also have a HUGE fear that as the months go on and he reaches toddler-hood I am in for what you are going through.  I know what toddlers can be like given I have a 2 1/2 year old who is also extremely determined and headstrong, but things are so easy as he doesn't have CF!  I didn't realise this fact until my CFer came into our lives how easy things were before.I am from Australia so I know that some treatments are different depending on where you come from but we are told that we can give the creon in applesauce ONLY and nothing else.  This is because apple has the right acidity levels to get it to the correct part of the intestines where they need to do their work.  Anyway, that is what we have been told here.Yes, I HATE CF too, for all the same reasons you have said, and I hate that these innocent little people have to tolerate soooo much.  And if I was in their shoes and I would also kick and scream.  I also cry lots about it as sometimes it is all to much.  Usually if I spill the little plastic container of prepared creon everywhere that always sets me off and I yell at the top of my voice that I HATE THESE F***ING ENZYMES AND I HATE THIS CRUEL F***ING DISEASE.  Then I clean them up and get on with it as what other choice is there....Anyway, I don't have any advice to offer and I'm sorry for that I just want to tell you I understand and have you in my thoughts.

 

[mneville]

Try the straw idea, it has worked amazing for Aidan. I also went
through a period of being so upset at fighting with him every meal
time. I dreaded feeding him. Thank goodness that Aidan loves
sitting on counters and playing in the sink. I could often sneak
the enzymes into him while he was playing on the counter. People
thought I was nuts but I was desperate to do anything that
worked!<br>
<br>
Aidan is also extremely head strong! But it had gotten so much
easier as he ages. At almost 2, he now helps me put the Creon in
the straw before he sucks them down. It will get easier.<br>
<br>
Can you get the VEST soon for your son? Aidan got his at around 19
months or so. We got the Incourage System by Dr Warwick and love
it! Aidan no longer minds sessions.<br>
<br>
Megan

 

[Ratatosk]

I remember we used to use a tongue depresser for the enzymes - -slid right in and out. But your problem sounds more like a spitting issue. I HATE the power struggles and the worry about whether he's going to eat.

Lately I've ended up yelling at DS during treatments because he likes to "spray the smoke in the air" or "hug me (my face/head) with his stinky feet". I gave him a time out and he laughed at me. And I feel like such a horrible mother that I almost went to toysrus earlier this week and bought him the Woody/Jessie set he was talking about this weekend.

This morning I burst into tears because we were watching a commercia -- a friggen commercial -- with a baby on it and DS says. I like babies. Babies are nice! With this huge smile. And I just felt so sad. He thinks we can get a baby at the baby store.

 

[kayleesgrandma]

Amber, my granddaughter is a strong-willed child--imagine my strong-willed child had a strong-willed child! Anyway, we used to, and still do it if the occassion warrents it, playy a little game of "don't you eat that when I'm not looking, don't you do that.." and then when she ate that I'd look under the table and ask "where did it go? Did the dog eat it?" She now takes the pills herself, and occassionally, we have to play the game. Hang in there, it too will pass. He's just trying to assert his independence. Have you tried pudding, my kaylee loves pudding! Good luck, don't cry mommy--it will get better--I promise...

 

[amber682]

    Thank you everyone. I feel much better
today. Somehow we managed to get through most of his treatments,
etc. today without much hassle. I think the clinic appt and the 1.5
hour ride there and back (each way) tired him out.  <br>
    I'm glad you all seem to know right where
I'm coming from. I say it a lot but it's comforting to know how
many other people are dealing with extremely similar issues and
truly understand how I'm feeling. I agree, sometimes reading
someone else's post I would swear I could have written it. And when
I'm feeling overwhelmed about something, its funny how the littlest
thing can set me off crying.<br>
    I'm definitely gonna give the straw a try.
Vinny loves it when I let him drink out of a straw instead of a
sippy cup.  He also LOVES water and playing in the sink. I
think it would distract him enough to just eat it so he could get
me out of his way so he could continue to play in  the sink. I
think the better not eat it while I'm not looking game would
work well with him too.<br>
    I met the RT at the new clinic today, I
like her a lot. I explained how difficult it is with Vinny and
asked about the age they generally start using the vest on
patients. She said usually 3 and they like to get them some other
sort of method (besides manual CPT) as soon as possible
because it is so difficult. Maybe as she gets to know Vinny they'll
let us a little earlier. He is 19-20 inches around the chest now.
I've read previously that the smallest vest is usually 18
inches?     <br>
    He's definitely trying to be independent.
(If he only really knew how dependant he really is!) I know it will
get better, especially once he can understand a little
better.  Don't worry, I'm not crying anymore, I think I
got it all out of my system for now! Talking to you all has made me
feel better, I hope I didn't depress you guys too much in the
process!<img src="">

 

[Ratatosk]

Sometimes you just need to vent, get it all out. Have a good cry and feel much better. My husband used to get so disgusted with my crying for "no reason" -- he'd say "DS is FINE. He's a HEALTHY, happy little boy". I never used to cry much, nowdays sometimes I cry just because that little smile melts my heart. And sometimes it's because of that stupid tomato soup commercial with the homesick kid. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Take care! You'll get Vinny figured out. He's probably messing with you to keep you on your toes.

 

[amber682]

I just wanted to let u know how the creon fight is going...<br>
<br>
The idea about letting him play in the sink immediately sounded
like a great idea because I know how much he loves to play in the
water. It worked like a charm!<img src="i/expressions/face-icon-small-happy.gif" border="0"><br>
He's so busy trying to just get me out of his face so he can play
in the water that he took it no prob. I can't believe I didn't
think of that sooner! Thanks Megan!<br>
<br>

 

[mneville]

Amber- I am so happy that it worked for you! I fed Aidan his Creon
on the counter about 5 times a day at that age. I found that to be
the hardest age to work with. Everywhere we went, Aidan would be
sitting on their counter playing while I worked to feed him. Now I
still resort to that sometimes. Whatever works!!<br>
<br>
Push for the VEST! You do not need to wait until he is 3. Aidan is
not even two and has been using it since April. The number for the
Incourage System is<br>
1.800.793.1261<br>
You can get some info and then go back to your CF center stating
that there is a VEST available for your son's age. It will make
life alot easier once he gets used to it plus this VEST by Warwick
is so much more effective that standard CPT.<br>
<br>
Megan

 

[amber682]

Thanks Megan, I really appreciate it. I knew I had read a thread a
while back on this, and someone said that the child needs to be
atleast 18 in. around the chest. Vinny is almost 20 in. I know it
would be much more effective than what we're doing now. I'm going
to get the info now. Thanks again!

 

[EnergyGal]

Maybe the creon makes him feel bad could it be possibly to try another CF enzyme. There are newere ones out there on the market. Maybe children are smarter than we think they are.