Need advice on how to get my daughter to eat

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Michaelas Mom
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Date Joined Sep 2006
Total Posts : 18
   Posted 12/8/2006 6:04 PM (GMT -7)   
Hello Everyone I have a 21 month old daughter that was diagnosed with cf in August and ever since she has started taking the enzymes her eatting has gotten worse.  lately she won't eat anything i sometimes even have a hard time getting her to drink her Pediasure. she has been only taking 3 or 4 bites then she is done, if i keep trying to feed her she will gag herself then she throws up. I am getting very frustrated. i called the doctor and they want her to get a barium swallow done on tuesday. im not sure if that will show anything or not. does anyone know why she would be like this? has anyone else had this problem? is it her age with her almost being 2? any advise would really help. like i said before we found out she had cf she used to eat anything you put infront of her face, but not any more. and how much is a normal toddler supposed to eat?
 
If anyone could help that would be GREAT!!!
 
Melissa

NeefaFeefa
Regular Member


Date Joined Aug 2006
Total Posts : 74
   Posted 12/10/2006 3:13 AM (GMT -7)   
Hello Melissa!
 
I'm sorry about your predicament. I am just turning 17, and when I was diagnosed at 2, I had a hard time eating much also. In fact, when I was put in the hospital, I downright refused to eat. One thing that worked for my parents later though, was chocolate milk. No matter how bad or stubborn I was being, my parents would always get me to drink chocolate milk. That is actually what kept my weight up to a good level was because I was constantly drinking it (and my parents gave me whole milk, for the extra fat). I don't know if it will work for your daughter, but maybe if you try what my parents did, you might like the results (of course with a different food or drink, whatever Michaela likes).
 
I don't know if this will help, but it did help me to keep my weight up. I hope someone else has better advice for you, I'm just sorry that I don't. 
 
Em

"Sometimes I Thank God for Unanswered Prayers,


 


Michaelas Mom
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Date Joined Sep 2006
Total Posts : 18
   Posted 12/10/2006 6:15 PM (GMT -7)   
Thanks for you help. She is to drink pediaure 4-5 times a day and she does really good drinking that i just feel like she should be eatting meals also. i took her to the doc on saturday and she still has an ear infection her other med must not have gotten rid of it so she has had it for about 3 weeks now but she seems to be doing better she ate a good dinner for me tonight. but now we are dealing with a lot of diarreah from the antibiotic it really stinks. she is getting tubes put in her ears in jan so hopefully that will keep the ear infections away. they are not fun. and just to say im having another baby on dec 14th. so i have a lot going on right now.
again thanks a lot,
  Melissa

NeefaFeefa
Regular Member


Date Joined Aug 2006
Total Posts : 74
   Posted 12/11/2006 1:14 AM (GMT -7)   
Congratulations! Boy or girl?

"Sometimes I Thank God for Unanswered Prayers,


 


Michaelas Mom
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Date Joined Sep 2006
Total Posts : 18
   Posted 12/11/2006 7:40 AM (GMT -7)   
BOY!!! Tyler will be his name
 
Melissa

aHimmel
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Date Joined Nov 2006
Total Posts : 8
   Posted 12/11/2006 8:28 PM (GMT -7)   
Not to stress you out any more than you already are, but you MUSt not give up just because this child is fighting you.
 
If you cant get this baby to eat or drink then you may end up having an N-G tube installed.  It is not exactly what you want to hear, but I have to tell you, there is no better way to get calories into this kid and get him up in weight a few pounds.  Nutrition is of utmost importance.
 
What happens is this:  As nutrition declines, these kids tend to spiral down quicker.  In other words, they gain momentum going the wrong way.  Sometimes you NEED to kick start the system by getting his strength and nutrition up with a feeding tube.  It may only have to be installed for a couple of months, but its effects are long lasting once that kid gains a few pounds.  He may actually be a different kid--more energy and a better appetite.
 
Many studies have shown that low body weight is related to faster decline in lung function.
 
This baby should continue to make gains in weight just like any other kid.  It may come on at a slower pace, but baby should grow.  
 
Another suggestion is sometimes you may need to change enzymes.  They are not all the same.  We use pancrecarb which contains bicarb as a buffer.  It makes the enzymes work better.  Some people use zantac with enzymes to make them work better also.  The gut is very acidic in CF and enzymes dont work well in an acidic environment.  Also, the pancreas lacks the ability to secrete bicarb into the duodenum. 
Get MCT oil which you can add to some foods to increase calories. 
 
Also, make sure you get vitamins into him.  Most docs recommend ADEK's  I personally dont think they are the best, but these fat soluable vitamins are formulated to be bioavailable to CF patients.
 
Stay away from Calcium, and increase Magnesium.  Also, get him liking cruciferous vegetables, like broccoli, coliflower, kale, sprouts, etc.  www.sharktank.org
 
Dont let his poor eating go too long without getting him to his CF specialist.  I suggest you dont use a pediatrician, you should find a CF specialist.
 
How is his weight now and percentage on the growth chart?
Have you made any gains in weight/length since diagnosis?
Is this baby by chance still breast feeding or bottle feeding?
 
alan himmel
 
 
 

NeefaFeefa
Regular Member


Date Joined Aug 2006
Total Posts : 74
   Posted 12/11/2006 11:16 PM (GMT -7)   
A boy? That's fantastic! I hope everything goes well for you and your soon-to-be new baby boy!
 
As for what Alan said about the N-G tube, I also had one (at least I think that's what it was. I was fed through a tube) when I was in the hospital (like I said, I was mad at the doctors for sticking a big needle in me, so I wouldn't eat). I only had mine for about two weeks, and only at nigh but it still helped. Going that route will help you avoid a lack of nutrition for Michaela and it will make the gagging go away. Having kids with CF is quite the fight, but hopefully it will get better as she grows older.
 
So is Michaela excited about her soon-to-be new baby brother (at least as excited as a 2 yr old can get)?!
 
Emily
 
"Sometimes I Thank God for Unanswered Prayers,


 


Michaelas Mom
New Member


Date Joined Sep 2006
Total Posts : 18
   Posted 12/15/2006 8:38 PM (GMT -7)   

Thank you all for your replys.

My Boy Tyler couldn't wait till the 14th to be born i went into the hosp with contractions on the 12th and they did a c-section that day instead of waiting till the 14th. he weighed 7lb 11oz and 20 inches long. He looks great. They say his lungs sound clear. so i just got homw today which is the 15th thats why i haven't replyed back.  Michaela is very excited to be a big sister.

Her weight now is 22.4lbs and she is 21 months old and 32 inches tall they say she is 33% over all with her weight, and her lungs are perfectly clear everytime she goes to the doctors. she has been eatting well now that she is on antibiotics for an ear infection.

 

Melissa


NeefaFeefa
Regular Member


Date Joined Aug 2006
Total Posts : 74
   Posted 12/16/2006 1:16 AM (GMT -7)   
Once again Melissa, congratulations on Tyler and for Michaela's progress! So do you have to do any airway clearance for Michaela right now? Like "pat pats" or some kind of inhalation TOBI or anything?
"Sometimes I Thank God for Unanswered Prayers,


 


Michaelas Mom
New Member


Date Joined Sep 2006
Total Posts : 18
   Posted 12/17/2006 10:19 PM (GMT -7)   
Michaela does zopenex and pulmacourt 2 x's a day and we have to do the chest poundings although she never coughs after i am done but they say it is because he lungs are clear. she is doing awsome. today though she has had a lot of diarreah her first 2 diapers were black and then tonight she had a normal colored one but all the way up her back like before when we didn't know she had cf but she is starting to chew the pepples that are her pill since we have to open the capsule and put the meds in her applesause so im thinking maybe that couls be the reason i don't know. i would like to try to get her to swallow them but i don't know if she is to little for that or not. im going to call the doc in the morning and see what they say and i would like to get tyler tested asap. so far i dont see any symptoms so im real happy about that.
 
Melissa
Melissa


Michaela's G-Ma
New Member


Date Joined Jan 2007
Total Posts : 2
   Posted 1/5/2007 8:01 AM (GMT -7)   

Hi, I am Michaela's G-Ma.  I just wanted to post a comment about my new grandson Tyler.  We found out yesterday that he does not have CF!!  We are so happy.  We also had Michaela's check up yesterday and she is doing awsome!  Her lungs are so clear that they did not have to do chest x-rays or bacteria check.  We are still having trouble getting her to eat.  She has lost 1 pound but gained an inch in height.  They started her on Zantac to see if that will help her.  I hope it does.  If anyone has any suggestions on how to get a 22 month old to eat better, please post them.

Karen, G-Ma to 22 month old Michaela with CF and Tyler 3 weeks w/o CF

 


Gab's Mom
New Member


Date Joined Feb 2007
Total Posts : 5
   Posted 2/3/2007 12:37 PM (GMT -7)   
I'm in the same situation with a 19 month old who doesn't want to eat. The only supplement she'll drink is Boost Breeze, so she gets one everyday. I try not to get frustrated when she doesn't want to eat, but it's really difficult.

Michaelas Mom
New Member


Date Joined Sep 2006
Total Posts : 18
   Posted 2/3/2007 6:33 PM (GMT -7)   

Gabs Mom

   Will your daughter drink Pediasure? My daughter drinks 4-6 a day and it is really helping. her doc also put her on Zantac that may help your daughter, it seems to help mine as long as she gets it 2 x's a day i give it to her in the morning before breakfast and then after her nap so she is ready for dinner. her doc said that cf patients produce extra acid so that may be why she doesn't want to eat. my daughter was burping after she ate and trying to throw it up so she had quite a bit of acid but the zantac is helping a lot. when did your daughter get diagnosed? what meds is she on?

 

Melissa       I would love to hear about your daughter hope she is doing well.


Gab's Mom
New Member


Date Joined Feb 2007
Total Posts : 5
   Posted 2/5/2007 7:00 PM (GMT -7)   
Melissa,

My daughter won't drink pediasure or carnation instant breakfast. I have been adding heavy cream to her whole milk and she's tolerated that pretty well. At this point her only issue is her weight, otherwise she's been healthy.

Gab's Mom

logans mom
New Member


Date Joined Feb 2007
Total Posts : 1
   Posted 2/5/2007 7:02 PM (GMT -7)   

I have a 28 month old son named Logan who was diganosed@ 15 months. He also does not eat. he is 26 pounds and 34 inches tall and in 12 month clothes. He drinks pedisure takes prevacid for his acid hes on pormocort 2x day Tobi 2xs every 28 days then off 28 days he is also on ADEK vitamin creon emezines zertek and singular he also had a feeding tube ( before we knew he had cf they thought I was just a neglectful parent thank god for his DR!)

 So I know what you are going through and I dont know what to say about the eating cuse Im going through that too tubes too

 I also have 2 older girls who do not have CF


caretaker
New Member


Date Joined Apr 2007
Total Posts : 9
   Posted 4/22/2007 9:26 PM (GMT -7)   
I have 14 year with C.F. and she does not want to eat enough. and want take her shakes. Help please ! need someone to talk that has a child about the some age as her and how they are doing and how they are handleing it.
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