Trouble Eating - Please help.

[tapestry]

The last month has been pure hell. It's a fight every single day to get my daughter, Cassidy, to eat. She's eleven months old and she gets 4-5 bottles a day, plus stage 2 baby food. She doesn't want to eat anything. Not the baby food, not her bottles. She'll eat cheerios without a fit but that's it. She screams and cries through all her bottles and meals. I feed her every three hours or so throughout the day. If I wait until she indicates she's hungry she'll go all day only drinking six ounces or so.

Six weeks ago or so Cassidy developed bronchitis. Her appetite before that was great - she was drinking 30 ounces or more a day plus eating two to three jars of baby food and finger foods. The bronchitis of course affected her appetite and she didn't want to drink her bottles anymore. A week into the bronchitis she was diagnosed with CF and started all the meds (she gets xopinex twice a day, pulmicort twice a day, pulmozyme once a day, tanafed twice a day, nasonex twice a day, creon 5 microspheres one to two pills with each feeding, vitamax vitamin drops .5 ml twice a day). She's been over the bronchitis for a while now and is otherwise healthy (had a bit of a cold she just kicked last week). But still she won't eat. And it seems to be getting worse. I am seriously at my wits end here. I'm miserable, my husband's miserable and the baby is miserable whenever it's meal time. She fusses and cries throughout the meal.


Has anyone else had any trouble like this? Could it be related to the CF? I just don't know. We took her to her pediatrician and she was no help at all. This is a huge issue for our family and we seriously need help. I just don't know how much longer we can go on like this. Something has to change.

I just started Cassie on Zantac yesterday hoping maybe it was reflux bothering her. Her pulmonoligist said we should see results today but so far no improvement at all. Any ideas, similar experiences and such would be really, really appreciated.

Thanks.

 

[anonymous]

Hi Tapestry,

Ugh. I know what you are going through. I've said many times, "I'd rather give my son 10 treatments a day than feed him ONE MEAL!" It can be completely exhausting. Have you talked to your clinic's dietician for any ideas? I know that my son's appetite really decreased once he actually started enzymes because he was starting to finally digest food. This may be one of the reasons your daughter's appetite isn't as big as it was.

I would just be persistant, but don't force anything or she'll develop an even greater aversion to food. Is your daughter underweight? Have you discussed a g-tube (feeding tube) with your clinic as an option? I know a lot of cf parents whose children have these and they have been heaven sent.

I also know that kids - cf or not - go through stages. My son will have a decent appetite for weeks and then not want to even look at food. Hang in there. You'll start to figure out her eating style/habits once you adjust to all your doing. It's only been 2 months since diagnosis, so she may be really adjusting to a lot herself. I hope I am of some help. Good luck & keep us posted.

Carey

 

[anonymous]

Sorry to hear what you are going through. We have been through similar battles with my daughter and occasionally son. Yes, it does have a lot to do with cf, I think. (digestive issues, stomach cramps, who knows??) But a lot of parents with kids w/o cf have eating battles and food refusal. I think our desire as cf parents to get more food down because "we have to" just ends up causing more food refusal.

The most challenging time for us was when my daughter refused to take her bottles when she was three months old. She was diagnosed at five weeks old. Her pediatrician, GI, and pulmonologist were all no help. After about 6 weeks or so of food refusal I asked that she be put on a feeding tube. There was no other way to get the food down her. My family was against it, but looking back it was the best decision. She was on the feeding tube for three months until it was determined that she a milk allergy by an endoscopy. We changed formulas and out went the tube! I couldn't believe that three excellent doctors where wrong when they kept telling me it wasn't a milk allergy, just somehow cf related. That taught me that I need to play an active role in my kids care and demand more testing for example when I think it needs to be done.

My daughter also has gone through other times that she is not interested in eating. I often hear about parents saying after they start enzymes that is when food refusal sometimes starts. THIS IS THE MOST FRUSTRATING THING WHEN YOU ARE TRYING TO PUT WEIGHT ON A CHILD. A good book that I encourage you to read is called Child of Mine : Feeding With Love and Good Sense by Ellen Satter. A main theme is you can only decide when, and what for your child to eat. Your child decides how much. Hard to grasp that, but it really is true. We have seen a feeding psychologist at the hospital that offered advice, but I had already read enough to have heard most of what she had to say.

I have had another chance to practice good eating techniques with my son (also with cf) and I leave the feeding 100% up to him. That is after I have to feed every bite to my almost 4 year old due to the food struggles we have been through. I was always distracting her with toys and books. She never learned to feed herself because I was always concerned she wouldn't get enough, so I took control. My son seems to skip at least one meal a day and I just tell myself he will eat later, his weight is fine and it is best that he learn to eat properly.

My advice to you is to try and just let your daughter eat what she wants. If she says no, then end the meal. Try and set a positive tone at the dinner table, because as you know not much happens when she is upset. At 11 months old babies are starting to take control of the meal. I spoonfed my daughter baby food until 18 months (big mistake), but stopped it for my son at 10 months. He feed himself everything my two-year old daughter was eating (cut up meats, fruits, pastas).

Zantac did not help my kids, but Prevacid did. Not sure if you should see result in one day, I never have with anything we have tried.
Sharon, mom to Sophia, 3.5 and Jack, 20 months both with cf

 

[anonymous]

Sorry to hear of your feeding troubles. My daughter was diagnosed about 3 weeks ago, at 18 months. She has always given us a fit with eating, and started on Zantac when she was 2 months old. The Zantac seemed to help at first (though it takes about a week to get into their system & start helping), but we didn't think it did enough. At 16 months, we changed her to Prevacid, and 1 week later she was eating everything in site. The Prevacid also tastes better (it comes in a powder form, versus the syrup we had). If you don't see results with the Zantac in a few weeks, I would talk to your Drs about the Prevacid.
Good luck! Hang in there! <img src="i/expressions/sun.gif" border="0">

 

[anonymous]

Prevacid also comes in a tablet that just dissolves in their mouth. It is called Solutab. My son started taking it when he was a year old.
Sharon

 

[thefrogprincess]

lt could be that her tummy is upset. I switched enzymes a few years ago and it was the end of my love affair with dairy. Try switching brands of baby food/formula. If that doesn't help try another kind of enzyme. And good luck!

 

[tapestry]

Thanks! Her pulmonoligist switched her to Prevacid Solutabs last night. We'll wait a week and see how that goes. If that doesn't work (fingers crossed, PLEASE WORK!) then I'll try eliminating dairy and soy from her diet again. Only problem with that is everything I've been using to ammend her food to add extra calories is dairy based <img src="i/expressions/face-icon-small-sad.gif" border="0"> You know - butter, heavy cream, sweetended condensed milk and such. Cassidy is underweight right now - 11 months, 26 inches and only 15 and half pounds or so. She hasn't gained any significant weight (or kept it if she did) in over three months. I worry about her weight gain and physical growth because of all this. It sure is stressfull! Yesterday we managed to get 17 ounces in her. That's pretty standard lately. Today she's still fighting and fussing through every meal. I worry about getting dehydrated with drinking so little. Maybe I'll start giving her some gatoraid in addition to her bottles - I think she likes that, whereas she hates pedialyte (even the flavored ones!).

 

[anonymous]

i dont exactly know why but god has blessed us tremendously. the best way i can help is try A LOT of foods while she is just standing around. i know you may think, what about enzymes, but a bite or two wont hurt. we found out at 1 year old that our daughter LOVES pizza and speghetti. i know that sounds early but everything seems to be early for them. we slide in some veggies and fruits but after that we just feed her the most fattening things we can find. with a high pasta diet she is doing great. she is 30 pounds at 26 months old. my wife and i did disagree on how often to feed. she thought it should be every 3 hours but i said wait longer. she DOES need to get use to eating like we do, just more snacks. also maybe one more helpful thing might be, kids love to dip things. my daughter has for a while. try mayonaisse (very fattening) and ranch. even if it doesnt make sense for that kind of food. also, hasnt your dieticians switched you to pediasure? we did stop milk at 1 year old except at night. try that. there are A LOT of ways to change things and it can be easier that thought might make them. our biggest problem with our daughter IS digestive but you just keep battling and gotta try to win. good luck, hope this helped some

 

[thefrogprincess]

To add calories ask your CF clinic (dietician if they have one) about Polycose. I'm not sure if they still make it but my parents used it when I was a kid. Its an odorless, flavorless suppliment that is nothing but calories. You can put it in any liquid and it dissolves fast. My parents put it in jello, instant pudding, gatorade, soup, EVERYTHING.

 

[anonymous]

I am also battling with my 2 year old with CF.
He will not eat anything that doesn't come from a baby can, or yoghurt pottle.
I am constantly receiving lectures from family about his poor diet!
I have given up, so now I feed him those things throw in the butter, cream etc to bulk it up and leave it up to him.
I am hoping that he will reach a stage where he decides he wants to try other things and I will just keep offering the different stuff in the hope that he will take a liking to something new.
But I am way past cooking for hours to have him throw it back at me!
Rebekah
Mother to Matt 2years w/cf and baby on the way wo/CF

 

[anonymous]

Rebekah, I know this is a way out there question, but have you thought about supplementing you toddlers diet with breast milk once the new baby arrives? I don't mean breastfeed the toddler, but if you are going to pump, why not mix it with regular milk, in cereal, things like that. I know my husbands mother said that he (my husband) was the healthiest when she breastfed him (and he was in the 110th percentile for weight). Obviously, if your child is eating enought to maintiain their weight and intake-needs something like that would be unnecessary, but there are a lot of CF babies and kids that do have a problem with weight and getting enough protein and calorie intake.

I am just curious if this would make a difference, this isn't even backed up medically (that I know of) but it does seem to make sense to me. Just wondering....


Julie (wife to Mark 24 w/CF)

 

[thefrogprincess]

Is anyone giving your kids any kind of vitamin? Even if they are taking in enough calories to maintain or gain a little weight, it doesn't mean they ae getting a balanced diet. They have the vitamins now that are like gummy bears so it probably wouldn't be a huge battle to get them to take it. Just be sure to keep them out of their reach, you can over dose on vitamins.

Also, if you only let your kids eat what they want, thats all they'll want to eat. I used to be a picky eater but my mom refused to give in to me and be a short order cook. If I didn't eat what she gave me, I didn't eat. This may sound cruel, especially for a CF kid who needs to eat a lot, but your kids won't starve. They'll get hungry enough that they'll eat whatever you give them eventually. It worked with me and it worked with my cousin's son (he was the brattiest kid I ever saw when it came to food).