Parents with children with PEG tubes?

My son has been doing great since we have removed his new food allergies from his diet this past month. He was 19 lbs then lost down to almost 17lbs in just 2 weeks and now almost a month later his weight is back up at 21 lbs and I an super excited and thankful for that! I know its controversial to the eosinophilic disorder community, but we have left milk and milk products in his diet...but all of a sudden he is becoming extremely fussy and acts like he hurts ( he is only 15 months) and can't tell me what is going on. I called his GI and they are doing another scope Sept. 19th and the results from that will determine whether we leave milk in his diet. We have tried elecare Jr flavored and unflavored, as well as the neocate and he hates it he will not drink it any way we make it. I fear if he is allergic to milk, that he won't drink the elemental formula and since he is pretty much allergic to every meat I'm worried about where his protein and fat will come from. I asked his GI and she said he might would have to have a PEG tube if it came to that. The PEG tube terrifies me, I know that probably sounds bad but it scares me him being so little that he would pull it out :( and I guess I just don't like the thought of him being different. I'm just wondering if any of you would like to share your stories with the tube with your children.

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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.

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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!

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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.

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.

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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! :)

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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.....

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