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G-Tube help!

Posted: January 13th 2010

stperron

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Teddy, age 10, (MELAS and Complex III) is having issues with keeping weight on, and keeping food down.  makes sense.  His GI is evaluating the placement of a g-tube, so we can give him 30% of his caloric intake at night.  And try and get his hydration up.  All sounds logical to me.m  Poor kid vomits after dinner, just about every night.  I think it is because he is out of energy, and digesting the food is just too much work.

 

Any thoughts on this?  And with a G-tube, can he still swim?  He loves to be in the water.

Thanks everyone!!

Stephanie

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Stephanie Perron

Caringbridge.org/visit/teddyperron

Hi Stephanie, YES, he can

Submitted by arktjk on Wed, 01/13/2010 - 9:53pm.

Hi Stephanie, YES, he can still swim and pretty much do anything else he has been doing if he has the Mickey button. They are not all that bad, and actually a really good thing for helping with weight, nutrition, and pushing meds. My daughter had one from the age of 3 until she died at the age of almost 9, and it was one of the best things we could have done for her. It was a rough decision at first, but was the best one. Beth www.believingandachievingforabby.com

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Tina_EvesMum's picture

Hi yes both my girls have g

Submitted by Tina_EvesMum on Thu, 01/14/2010 - 4:16pm.

Hi yes both my girls have g tubes. Both love to swim. and Both have gained weight better. Eve lost all ability to swallow about two years ago, had an NG tube to start with then progressed to a G tube when it became obvious she was not going to regain the swallow. Both girls had a Nissen fundoplication at the same time as they both suffered badly from reflux. I would urge you to have your son tested for reflux prior to haveing the tube as it can increase the problems and if a fundoplication is going to be considered it makes good sense to do both under one anaesthetic. I honestly find it hard to see any negatives to the tubes for Rosie and Eve. Makes getting meds in simple, easy to keep fluids up if needed and if overnight feeding is possible it takes the stress out of eating and can then mean the appetite actually improves. 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!

Thanks! You are both right,

Submitted by stperron on Thu, 01/14/2010 - 6:25pm.

Thanks! You are both right, it is a hard decision!!! But I want to improve his quality of life. You know what is hard, that we have a primary peditrician that doesn't understand Mito very well, so he is giving push back to our GI specialist. So frustrating. I almost gave him a copy of the book from Mito Action, When Jeremy Jones got a G tube!!
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Stephanie Perron

Caringbridge.org/visit/teddyperron

Anthonys mom's picture

Stephanie, We had

Submitted by Anthonys mom on Thu, 01/14/2010 - 9:17pm.

Stephanie, We had Anthony's put in when he was 21 months and it has been great for us. He was vomiting everyday sometimes a couple times a day. We had a scope done at that same time and also found he had something else going on. Now almost 2 years later he is almost double his weight and is doing good. He also had a problem with dehydration ending him up in the er every other month, it has helped with that.Find a new Peditrician one you like it that really helped us! Good Luck! Keep us updated