LIVING

With EoE, Allergies, Asthma and a G-Tube

Been there, done that

Been there, done that: Help for New Tubies 

What is your advice for those who are faced with the decision to tube feed or are new to tube feeding? Share your knowledge and experience to help others!

Today’s topic was a logical decision but very hard for us to say out loud.

Like I have blogged before, I never would have imagined we would be at the point we are now. Our road seems to be turning into dirt as I type. A little Tinleigh update – she’s recently had some food impaction and is back to choking often. Not good since we have removed all foods she has tested positive to plus some. We don’t have high hopes for her next scope, which may result in a tube for her as well. Few extra prayers for Tinleigh if you don’t mind.

Back to the topic

The decision of getting a feeding tube can almost be a selfish one for the parent. It can go either way too. Especially with the allergy kids. A parent can say yes give my child a feeding tube then I won’t have to worry about cooking all these special meals for them. Makes me sick to my stomach to type that out. A parent can also say no you will not put a tube in my child I would never do that to them. (guilty here)  Which may result in poor nutrition and poor growth.

When considering a feeding tube for your child you must think about your child’s health.

A child’s body is made to grow. It is your job as a parent to help them do that in a healthy way. If your child is falling on the growth charts it’s your job to get them back on. Their little brains are developing as well. If the nutrition isn’t there, then their brain can’t develop as it should be. You need to get your child what their body needs to thrive. If that means through a tube then you should help them to get one placed.

OLYMPUS DIGITAL CAMERA DSC02098DSC04368eDSCN0307

We struggled back and forth on the decision. What it came down to was what Gage needed, not us. He was losing weight. Being 4 his little brain is developing a lot right now. He was missing an entire food group from his diet. How selfish of me to even think about trying to remove something else from his diet to get him a clear scope. It was time to throw in the towel to his horrid disease and give Gage what he needed, a g-tube.

Gage is shy. We knew it was probably going to be hard for him at first. He has shocked the pants off me though. He is quite proud of his tube. He’s also proud of how big his muscles are growing. I think it may have been a totally different ball game if he would have had to have an n-tube first. That may have turned him into a hermit. I’m glad we made the decision to push for the g-tube from the get go. I’m also so glad we had an understanding GI doctor at the time.

There are many diseases that may require kids to get a feeding tube. I only have experience with the allergy side of it. I think that all parents of tubies would agree, seeing your child thrive with a feeding tube is a huge sigh of relief.

I won’t lie, I don’t miss cooking for Gage one bit. However, if he had enough food in his diet to thrive on, I would cook for him again in a heartbeat. Hopefully that day will come. For now I’m just calling this my Gage cooking break.

DSCN0080

Gage pre-tube

Advertisements

February 12, 2013 - Posted by | LIVING

2 Comments »

  1. This was such a hard decision for me and one I fought with for a while. I also said there was no way I was going to do that to my child and put in a feeding tube. I felt like it meant I was a failure because I couldn’t adequately get my baby enough nutrition. He started out eating solids so great at first. Completely the opposite of my daughter. I would always have to give him seconds or thirds. Then he slowly stopped eating as we began eliminating foods from his diet due to allergies. He began gagging and choking a lot when he ate. He began throwing up often as I struggled to figure out his allergies. Then they did a scope thinking we would find EoE, but by this point we had him on a special formula only diet through an ng tube. They didn’t find anything from the scope at this point. Now looking back on it, I feel even more guilty for putting him through the experience of an ng tube. It was uncomfortable for him, but I was convinced the doctors would figure out why he wasn’t eating, they would fix it, and we wouldn’t have to have any tube at all. Now we go to feeding therapy and he is eating some, but he grimaces often when he swallows. And he is definitely still allergic to other things that we haven’t figured out yet, since he still is reacting. We will be rescoping him soon, but in the meantime, he is thriving with his tube and I am so glad now that we have it. No more trips to the ER due to dehydration, he doesn’t look quite so skinny, and he is happy. If I had to do it all over again, I would never have done the ng tube. I wouldn’t have waited so long (3 months) to get the g-tube. It has been one of the hardest things I’ve ever had to go through, but as you said, we have to think of them and their health.

    Like

    Comment by Jennifer | February 13, 2013 | Reply

  2. You did what you had to do. You are absolutely right, He is of you but he does not belong to you so you have to do what is best for him. I wish we had not fooled around with an NG tube for 5 months before getting the g-tube. OUr daughter was diagnosed at 21 months – her only outward sign was that she stopped eating , she just drank milk but only in her sleep. She started out eating very well but after her first birthday everything went down hill fast. 4 days after she was diagnosed we got the tube because she would not eat at all. That NG tube absolutely made her aversion to food and feeding worse. But I was reluctant to have the surgery because I thought as soon as she gets a clean scope she will start eating. But things were much slower than that. However, it did allow us to eliminate the milk absolutely and within 1 week her blood eos were halved. This is strange because she does not show up allergic to milk AT ALL on her allergy tests (skin, blood and special array tests). However, we know that she is allergic because she had effectively self eliminated all food but milk in the 3-4 months prior to being diagnosed and the only thing we changed was putting her on the all elecare diet. Now she has added back just about every food except for the top 6 allergens. She still gets about 1 bottle of elecare via tube/day because she still doesn’t eat enough volume. She just turned 3 and has had 3 clean scopes. I also “like” the tube because it allows us to give her adult strength probiotics, vitamins, fish and coconut oil that her functional nutritionist recommends right through the tube. Now we are trialling gluten so wish us luck!

    Like

    Comment by Candace Tillman Tyndall | February 15, 2013 | Reply


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

w

Connecting to %s

%d bloggers like this: