Parents with children with PEG tubes?

• By vdel
• Reply 3364230
• September 10, 2012 at 4:11 pm
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My son went off of food and got his g tube at the age of 5, so he knew life without it very well. He had eaten an almost complete diet up until then. And then on the 2nd day of kindergarten, just 2 months after tube placement, he pulled his shirt up for a little girl (that he didn't know) and said, "This is the best thing my mommy and daddy ever did for me!" That is how much better he felt with it and how happy he was that he would never have to taste the formula again. If your child does get a tube, see if the surgeon will start with a button rather than a peg. It is a much lower profile, but it is my understanding that this choice is up to the surgeon. Please message me any questions you have about tubes and living with a tube fed kid. We have had nearly every disaster possible with a tube, from them falling out to him having to go to a GJ to dilations, and I still do not regret it for one second. His quality of life as well as that of our entire family improved dramatically with that piece of plastic.

• By wildehailey
• Reply 3364441
• September 10, 2012 at 5:26 pm
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Thank you for sharing your story that makes me feel so much better. I feel bad for considering it because I feel like well maybe if we just try harder to get him to drink the neocate or what if we can make it taste better but he cries when he drinks it, it is a fight every day. I will talk about the G tube that does sound better, I'm sure it is a lot easier than drinking that formula everyday, and I feel so bad to force feed him when he already feels bad. Is he still able to eat food with the tube? Idk if that's a dumb question I'm just trying to figure this whole thing out its still so new to me. And I think your son is so brave btw I really admire children with this horrible disease idk if I could deal with and be as thankful as they are!

• By vdel
• Reply 3365867
• September 11, 2012 at 9:05 am
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Don't be so hard on yourself. We tried really hard to get our son to drink it and he just couldn't. I wouldn't drink the stuff either, so I couldn't blame him for that.

Here is a link to APFED's feeding tube page. There is a link to Oley at the bottom. Maybe reading about it will make you feel better and give you the information you need to ask questions at the next appointment. It is a lot of work; there is not way around it. But a good talk with your child's dr sounds like a good idea. http://apfed.org/drupal/drupal/feeding_tubes

Yes, my son can eat with his tube. He went off food when he first got the tube. He was still allowed dum dums, sugar, and water by his dr. He has been trialing foods for a couple of years and now has 9 safe foods. But, he is still tube fed through the night.

• By wildehailey
• Reply 3366168
• September 11, 2012 at 10:54 am
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Thank you that makes me feel so much better, I am glad your son is finding foods he can tolerate. Braylon's doctor believes that he is becoming intolerant to all food proteins but says that with EoE 70% of patients develop an allergy to all proteins called Multiple Food Protein Intolerance I had never heard of this before, but thank you for the support and ecouragement and for sharing the link! :)

• By Emilierose
• Reply 3398159
• September 22, 2012 at 9:26 pm
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Best thing we ever did! But I call in a G tube! No sweat it if it is going to make him fel better and he is going to be happy and healthy! This to shall pass! We are always on a massive protein search! It is a family pastime at this point, LOL.....