I have been doing A LOT of thinking lately in regards to Allie and her eating habits or lack there of. I now she can eat because she does when she chooses to. Her feeding therapy is twice a week and each session is different, sometimes she eats and sometimes she doesn't. We know Allie has no food aversions and to the best of our knowledge, no medical reason to not eat.
Almost all of her doctors believe she was born with a medical condition that caused her not to eat and now it's a learned behavior because it's all she's known since birth. In addition to that original medical condition, Allie vomited almost every tub feeding for a full year of her life. (October 2009 - January 2011). There is no wonder our little Allie doesn't enjoy eating - she has vomited more in her short life than the average person does in a lifetime.
Allie has now been vomit free since January 2011 and her oral intake has increased. Her oral intake is still very low and very sporadic. Some days she eats well and other days she doesn't eat anything. I don't think its fair of us to make Allie eat orally when she's full all the time with tube feedings. To be honest, I feel like I'm banging my head against the wall every time I try to force her to eat. I know she's not hungry because of her tube feeds, I know her stomach is smaller than the typical 3 year old and her feedings keep her full because she's getting a feeding every 3 hours. As my father-in-law would say, "it's a no brainer". Of course Allie doesn't want to eat.
So, with all my thinking lately, I decided I am going to stop Allie's tube feedings and see what happens. Keep in mind Allie does eat orally every day - just small amounts. She also drinks her elemental formula orally through her sippy cup so I know she's getting great nutrition from her formula. Allie is currently drinking 8-12 oz daily which is a huge increase for her.
I spoke to Allie's GI doctor this morning and he thinks trying this tube wean is a good idea. We meet him this afternoon for a quick weight and height check. He is going to monitor Allie closely and if she starts loosing weight or height, we need to start her feeds up right away. I know cutting feeds cold turkey isn't the "typical" way to wean a child from the tube but nothing with Allie has been "typical" - even from the start.
I'm not setting my hopes too high and quite honestly, I won't be surprised if this tube wean fails. However, I'm going to give it my best shot and with the help of our feeding therapist, it just might work. Only time will tell but like I said a couple times before, if we don't try it we won't know if it will work. I will not be discouraged or upset if Allie continues to refuse to eat, I know it's not easy for her to eat and she has been struggling with this for 3 years. This is going to be a long road, heck its already been a long 3 years but we are in it for the long haul and even the detours.
I will keep you updated on Allie's progress and how her oral intake is without any tube feedings. I will be checking her weight daily and I plan to still use her tube for hydration purposes. Of course, my biggest fear is Allie getting dehydrated - everything spirals downwards from there. So, during this trial wean, we will keep Allie healthy and happy and hopefully gaining weight. This is going to be an interesting couple weeks but I know no matter what the outcome, it will never be a failure!!!!!
If your child has been weaned from the tube, I would love to hear your story. Tips that worked great or things that didn't work out so well. You can leave me a message here or email me at berndt@charter.net
Thanks!
Good luck! Has Allie ever been on an appetite stimulant such as Periactin? Our girls stories are similiar and it Periactin does wonders for Kylie's appetite. She is actually 50% tube free at this point. I will be watching for updates b/c I think at some point we may have to go down that same road to get Kylie all the way tube free. Your a brave mama! Here is a link to a blog of a successful cold turkey tube wean that you may want to read http://www.franklyfrankie.com/?paged=2
ReplyDeleteHi Heather - thanks for the "good luck" we are going to need it. Yes, Allie has tried several appetite enhancers. Unfortunately, they didn't work for her. I was thinking of trying them again though since it's been almost a year since she has been on any of them. I have heard they work great for kids so that's wonderful.
ReplyDeleteThank you so much for the link to the other mom's blog about cold turkey tube weaning. I cannot wait to sit down and read it!!
Jodi (Allie's mom)
The appetite stimulant had absloutely no effect on Kylie until she was 2 years old. We started trying a couple of months before her 2nd birthday and gave up b/c it was doing nothing. Her GI dr talked me into giving it one more try a couple months later and she was like a different kid. It only lasts for short periods of time and then its effectiveness wears off, so we give it until it stops working and then take a week or so off and start over. It always makes her really sleepy the first couple days too, but they burn less calories when they are sleeping, right??? lol. I hope this works out for Allie and you too!
ReplyDelete