It's been over a month since we've tried easing Peanut's GI problems by changing around her formula mixture. Because of her metabolic disorder, she has to be on a low-fat, high-protein diet. It's hard to make when she doesn't take anything by mouth, everything through the tube has to be measured exactly right.
We stopped her BeneProtein, and her Polycose, leaving her on just Neocate Infant. She was better GI-wise than she had been in ages! She started sleeping so much better through the night, and although she was still retching and gagging, she wasn't actually vomitting. The dietician had me slowly add the Polycose back in, because she needs those calories. She did fine for two weeks, still no vomitting and still sleeping better.
Then the dietician asked me to add back in the Beneprotein, so we could be SURE it was that. It is a whey protein, which is a dairy product. We added it for two nights to her mixture, and we had two hellish nights. She was up screaming and writhing around in her crib. She was retching and gagging and ... throwing up. So I stopped the Beneprotein last night.
At least we KNOW what the problem causer is now! The dietician is now trying to find a protein supplement that is dairy free.
I had this thought this weekend, that perhaps I should research blended diets. Wouldn't it make more sense to get a recipe that would include all the calories, fats, proteins, vitamins, etc .. .that Peanut needs? Then I could blend it up real good and put it through her feeding pump that way.
I am a bit scared to ask the dietician about it, afraid to sound like a wackjob. LOL I think I will ask her when she calls me back. The worst she could say is "No, I don't recommend it".
Do any of you use a blended diet for your tube-fed kids, instead of formula??
We used to revel in the "new perfect" that was our life. Raising a beautiful girl with multiple special needs showed us that "perfect" is all in our minds. Emily's life was perfect. It was happy, it was brilliant. She was social, outgoing, silly, and ticklish. Now we are learning to get through life without our "Perfect Peanut" in it. This is most certainly NOT a new kind of perfect.
7 comments:
Our nutritionist says never put anything but milk or formula or water, down the tube. I always put whatever pureed food he doesnt finish by mouth down his tube, No meat becuase it does clog it no matter how thin it is.
I found this book on blended diets and tube feeding. Hope it helps.
http://www.mealtimenotions.com/HomemadeBlendedFormulaHandbook.htm
http://www.mealtimenotions.com/HomemadeBlendedFormulaHandbook.htm
it didnt paste the whole site on my last comment.
there you go!
Hi, Marissa's mom Alicia here.
Thank you for your comment on my blog. I just got done reading your blog back to front and I have to say your kids are beautiful. Peanut is so full of smiles and life.
I love the fact that you are such a staunch advocate for your daughter and fortunately the class she is in now is good. It is so hard to stand up for our kids and let people know what they NEED when nobody will listen.
And I can totally relate to the gross things you never thought you would be able to tolerate until yo became a mommy. We have to suction Marissa's trach and just this evening, I dropped a couple of drops of saline down it to break up the junk and she coughed a HUGE snot rocket out at me. It landed on my nose!! My husband started laughing hysterically and I calmly wiped it off and continued suctioning. I did, however, tell my husband that if I could have tolerated it there for any longer I would have had him take a picture of it! Too gross!!
I am looking forward to checking in on your wonderful family.
Alicia
Hi, again!
I was going to email you (finally) and I thought I would check out your blog first... Glad I did!
(Sorry haven't emailed yet - so crazy busy trying to get the move accomplished!)
Regarding feedings - I'll say it again, Gracie and Peanut sound like two peas in a pod with so many similarities... although we can't seem to nail down a culprit. Just when we think we have found it, all of the problems start in again.
I communicate on a CHARGE Syndrome list-serv regularly and many of those people also belong to a list-serv specifically related to blended diets. There is a website that is often mentioned on our group - it is: http://www.blenderizeddiet.com/index.html
Good luck with this... I am so curious to know what works and what doesn't. We can't keep our girlie stable enough to safely give it a try. She has dropped 3 lbs since August.
Look forward to chatting with you... so excited to hopefully MEET you soon, too! :)
I have lots of Dr. referrals for CHLA, but none for CHOC... so I would like to connect soon and get some info from you, please! :-)
Talk to you soon!
Big hugs to Peanut!
(And, I can't forget Monkey, too!)
Kristi
Oh... and CONGRATULATIONS on the big raffle win!
Oh, yes, girl. It's totally my goal, the blended table foods bit. We are so very gradually getting there, and I am realizing that my biggest barrier is my OCD-ishness that comes up when I work on this, AND that I have a learned insecurity issue where Mallorie is concerned. When people told me "don't" or "it makes us nervous to think about you not feeding a scietific formula," instead of getting more stubborn, I backed down. I was GOING to tell you about the mealtimenotions.com site, but Jessica beat me to it! A mom I know told me about it, because the women who wrote it helped her get her son on a pureed tube-fed diet. I mentioned it to the ECI workers, and next thing I knew, they had gone to a conference and bought up books to give to families as loaners. It's that exciting. I told our daughter's pediatrician about the book, and she bought it for me as a Christmas present!
Best money you will ever spend.
Let the OCD in yourself go, is my only suggestion. Yeah, because I listen so well to myself in that area!!! (But I'm trying.)
Forgot to say that I loved this post! This stuff is my passion, now. Go for it!
And it's interesting ... we also found out through process of elimination that Mal canNOT take the beneprotein. Every time we re-test, we stimulate that whole gag/retch/vomit cycle. I kinda get the message, now. But it's funny, I think she's doing OK when we try a good yogurt.
I'm glad you found the cause of the GI troubles.
BTW, I'm here through a comment you made at Ben and His Brothers.
Your kids are beautiful!
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