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g-tube dependence

Posted: January 15th 2010

Koltonsmom

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Hello everyone!

Our son Kolton just got his mic-key button placed in September. Before that he was eating regular table food, just not enough to keep him from getting sick all of the time (every 3-4 weeks we were in the hospital). The feeding tube has been such a blessing- no seizures, no severe illnesses, and he has grown 2in. and gained 3lbs.!! Now, the down side is that he has now stopped eating meals. He will take bites of crackers throughout the day, but is getting his true nutritional support from his tube. The idea orginally was being that the tube would only be for an emergency access when he was sick and that Kolton would eat by mouth. We took Kolton to Kennedy Kreiger Institute in Baltimore for an eval. in the feeding clinic. They suggested he has a g-tube dependence and they put him on the waiting list for the inpatient program. Has anyone else delt with this before? It is truly tearing us apart because otherwise he is doing fantastic..The program is 6-8 weeks!
Tina_EvesMum's picture

If Kolton is not getting so

Submitted by Tina_EvesMum on Sat, 01/16/2010 - 3:04am.

If Kolton is not getting so sick, gainingweight and otherwise doing well I would not want to be doing anything else. Both my girls have G-tubes, Eve has no swallow so relies totally on her tube for everything. Rosie has gone full circle through eating nothing orally toitally tube fed through learning to ear and enjoy food and now back to all nutrition through the tube. If Kolton finds eating uncomfortable, maybe scary if he perhaps doesnt have a perfect swallow. Then maybe that is why he doesnt want to eat. I would offer him food but dont pressure him. so long as he is well nourished is it really such a huge problem? hugs
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Tina Mum of 5 children Eve has just been given a suspected diagnosis of Mitochondrial Cytopathy.

I do not know what the future holds but I am glad I know who holds the future!

My personal opinion about

Submitted by arktjk on Sat, 01/16/2010 - 11:52pm.

My personal opinion about feeding clinics for mito children-no good, may do more harm and cause more emotional/stress problems. If Kolton is doing well with the tube, he is where he needs to be. We were going to do a feeding clinic w/our daughter before we had a diagnosis of mito and before the g-tube, but decided not to and thank goodness we didn't, because it would have caused much more anxiety than there already was and would not have helped. As it turned out there really was a physical reason she couldn't eat because of the mito. She did end up with the Mickey button and that ended up being the least of her problems. It was one of the best things we did for her in the beginning. Unfortunately, her disease progressed rapidly and she passed away last March. The point I am making is that if Kolton is doing well with it, try not to feel worried/guilty if he is not eating orally like he was. He is now growing, which is very important. Take care, Beth
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Koltonsmom's picture

Thank you ladies. Both of

Submitted by Koltonsmom on Mon, 01/18/2010 - 12:10am.

Thank you ladies. Both of you had really valid points. We have a few months to way all of the opitions, but either way I'm going to try and not worry so much about him eating by mouth. He is doing remarkable and we are truly blessed for that. Beth god bless you and your family, I'm truly sorry for your loss. Both of you take care!! Angie