Baby refusing enzymes - HELP!

[briarrose]

I have a baby who is 11-months-old (almost 1-year-old) who was diagnosed when he was 12 days old and was started on enzymes immediately. Up until the last two weeks, he would take is enzymes like a chance... 4 Creon 6000 opened up and sprinkled on applesauce.
Now, for the last two weeks, it's been a nightmare getting him his Creon. (He's also refusing the spoon for food.) We've tried putting some on the nipple of the bottle or on a pacifier and sticking it in his mouth, but only a few stick at a time, and 4 pills is a lot of beads to get in him this way. We've also tried putting it on other food, but he's not interested. And, he won't let me put my fingers anywhere near his mouth, so I can't get them on my fingers and then into him.
Does anyone have any suggestions on how to get him his enzymes? We're at a somewhat scary point with his weight (although if we could get him his enzymes, we definitely have things to try to get him more calories and he is starting to gain again), to the point where if we can't get him to take enzymes in the next few days, I think our clinic is ready to put in a g-tube, which we are trying to avoid right now.
He has 6 teeth already and I can't see any new ones coming in, so I don't think it's teething (although I wouldn't swear to it.)
Thank you!
Erin

 

[Aboveallislove]

Dear Erin,

I am so sorry; I went through something very similar and it was very scary. A little history so you know where I'm coming from: Our son started refusing food and ditto on enzymes around the same time. I was convinced something was wrong; the CF clinic gave us a jumbo syringe to try to get enzymes in, with feeding tube as next step. We went to an OT to make check to see if something wrong and she concluded "parental mismanagement." Basically, our son was refusing food because I was pushing/pressuring him to eat. She recommended "Child of Mine" by Ellyn Satter and I changed my approach and after a few days of basically no food and little formula, he started eating happily on his own. In the meantime, i did enzymes by having on a spoon, tickling him to making him laugh to open, sticking in the spoon with them and then wiping off what came out and repeating a little at a time. If you blow in his face it triggers a swallow reflex so you can also do that as soon as the enzymes go in on the applesauce. Also, gently massaing his checks does the same. So I basically served the food--mostly finger food so he didn't need a spoon, a bottle--which he could take or not--and/or sippy cup and let him eat or not. After a couple days testing me, he ate on his own. And as I said, I only "pressured" the enzymes--but I didn't do them immediately before eating, but a little through the meal--I know not ideal but better than putting him off for the entire meal by me starting with the preasure. (I was able to get all the enzymes down eventually with a little goffiness/tickling etc.) After he got comfortable with the food, I reached out to Ellyn Satter and she gave me step by step directions on how to do medicines. The link is below. Within a week he was taking his enzymes on his own, but the first day was at least an hour of screaming--he eventually was screaming and crying while grabbing my hand with the spoon to put in his mouth. This approach has worked for all his new medicines too, with a much shorter time (until he had to take Flagyle with is NASTY and another story). So I'd recommend you: 1) get a copy of Child of Mine ASAP and make sure you aren't pressuring re food--I was and it is impossible not to want to given the importance of weight, but it backfires; 2) you can go to Facebook.com and ask Ellyn Satter a question if you need advise--she can point you to the "basics" outlined in Child of Mine which are also on her webpage here; 3) back off on food--use finger foods, soft foods left on table for son; and then 4) trick, tickle, whatever to get enzymes in for a few days until the food is back on route and then try the above approach to medicines. NOTE: You have to really believe it will work and be calm, etc. and it really will. 5) make sure there is nothing else going on. Our son actually was having GI issues which I think went undetected at the time because I was pressuring food and could not distinguish b/w a GI issue (constipation/IDOS) and my mismanagement.

http://www.ellynsatter.com/

http://www.ellynsatter.com/june-2011-family-meals-focus-58-medication-and-the-division-of-responsibility-i-171.html

The first link is her general page which explains her approach to feeding which is supported by research (she is a nutritionist as well as a social worker). The second is my story re the medicines.

Please write back and/or PM if you have any question. I KNOW exactly how hard this is having lived through the same scenerio. Also, FYI: Our son went from 6%ish at birth to 50% BMI 6 months ago. Prayers and hugs.

 

[briarrose]

@Aboveallislove-- Thank you for your response. There are definitely some GI issues involved, and we actually think that's what started this whole thing. (He needed an NG tube about 5 months ago to clear a blockage, and he started giving us trouble eating right after that, although this is the first time he's refused a spoon when it didn't directly involve a front tooth coming in.) Whoever said babies don't remember never met mine! <img src="i/expressions/face-icon-small-smile.gif" border="0">

I've read part of one of Ellyn Satter's other books (How to get your child to eat) and didn't really find it helpful for a CF-er. Maybe the book you recommended might be better. I'll see if I can get a hold of a copy quickly (too bad it's not available as an ebook!)

Our other problem is that he's not interested in feeding himself. He'll put anything and everything in his mouth but for food, and he's only been willing to start holding a bottle or sippy cup of water today. He's still willing to take a bottle, so we've been loading up bottles with extra calories and letting him eat whatever he wants in terms of yogurt or purees, but this new thing with the enzyme is just killing us.

Thanks again for your suggestions!

Erin

 

[Aboveallislove]

Dear Erin,

Just to follow-up on the Satter book--it is not geared toward CF, but eating issues in general, and the principles apply to both CF and non-CF kids--they don't want to feel pressure. That might not be the issue, but it helped me so much to read Child of Mine b/c from the stories it made me realize I was the problem--I was pressuring DS and once I backed off, he did well. her webpage has all the details re her approach to feeding (and again it is supported by research), but for me I really needed to read the story after story that was EXACTLY like me and my approach to see what was going wrong.

Re the enzymes--look at the second link that gives step by step directions--it is hard but if you decide up front you will do it, it works!! In the meantime, see if the silliness to get a laugh, or the tickle, to get open and stick in and then blow in face to get ds to swallow. Maybe see if you can get a higher dose of enzymes so you only have to get in one enzyme.

Re the GI issues: We had one hospitalization from DIOS and every time DS started to get backed-up his eating went down--WE just figured it out a few months ago--it was constipation followed by a bacterial overgrowth. Our son is on Miralax (1 - 2 scoops a day) to keep from getting backed up and is on his second course of antibiotics for the bacterial overgrowth. I now watch his eating as a sign that things are arry, but also confirming with other things (gas, acid reflux, weird smelling stools, bad breath).

Hang in there and please write back on any questions or if there is anything else I can help with. I KNOW how much this sucks--meal time is torture and every other minute is worrying about the next meal. Hugs and prayers.

 

[Ratatosk]

DS hated applesauce, he also hated pregistimil -- the "predigested" formula he was prescribed. He'd try to escape when we came at him with the bottle. So we switched to babyfood bananas and regular, albeit extra calorie formula (More powder to water ratio). I also did better "sleep feeding". Feeding him when he was sleepy or sleeping. I was calmer and so was he.

I'd place the enzymes on a spoonful of babyfood bananas, shove it in his mouth, followed quicklyl with his bottle. I know some people have had luck with just pouring the beads diretly into the babies mouth followed with the bottle.

 

[Gammaw]

Suggestions. Does your little 1 see you put any enzymes in his food? Or are you hiding it from him? He may not be trusting his food since's there something in there. And if you're hiding it from him he doesn't trust you. Back off. Let him refuse or eat what he will. When you mix enzymes let him watch while you mix and be sure to explain - youron little one isa smart! He knows youre trying to slip something in on him. Tell him tese are his szymies, they will make him big and strong, eat some yourself in front of him. He will refuse it at first. That's OK. Feed him anything he wants and ignore his refusals, praise hishim eating.e. Within a day or two of repeating this, my little guy started chowing down happily. Be sure to praise him when he does.

 

[Gammaw]

Sorry for all the typos above! Typing responses on my android for this forum is difficult. Feel free to send me a private message with questions for when I get to a real computer!

 

[Gammaw]

Ok a little more detail for you. We had the same problem. I was at a loss. The CF Center we went to had a psychiatric nurse on his team. She was great. She explained that he knew full well we were trying to poison him with those little beads that appeared in his food. He came to understand that his food wasnt supposed to have them! So when we would mix them in at the counter out of his sight, he didn't trust us. We started bringing the bottle of enzymes to his high chair, and doing everything in front of him. Explaining the whole way. These are your zymies. They make you big and strong. Open up the capsule and mix them in his food in front of him. They can't be so bad if you're showing it to him! Take a bite of them yourself. Emphasize how good they are! Yum! I want more! Then give them to him. At first he will refuse. That's ok. Keep smiling and move on to one of his favorite foods. Give him access to any food he wants to eat, even without the enzymes. Don't make a big deal out of any response - except when he does eat. Praise him. Clap. Laugh. Yummy! You are going to be so big and strong and smart! Wow! Look at all you ate! There was a point at which our guy didn't want anything to do with applesauce. We switched to strawberry syrup, pudding, rice pudding, tapioca, etc. Yes, they are alkaline, but we were told it was ok as long as we fed them immediately after mixing. Our CFer is now in the 73% For height and weight, so he's doing just fine! Feel free to let me know if you have questions. I hope this helps and it's a lot simpler and kinder than the other approaches to me.