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GI problems

Posted: January 10th 2009

Jeanne

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Hi, my 6 yr old grandson is newly, finally diagnosed , after muscle bx with mitochondrial disease. He is sevely developly delayed,severe hypotonis, has seizures. Very handsome. One big problem that we have been dealing with for several yrs is vomiting...he has a G-tube...freq vomits after feeding...uses miralax for bowels...we have tried all the usual remedies....spacing out feedings, slower rates...anybody have any ideas?

Also...anybody know an MD in the Baltimore area that is comfortable with mitochondrial disease  children...

Apreciate any ideas....Thanks in advance, Jeanne

 
MotherWhimsey's picture

It sounds like he could

Submitted by MotherWhimsey on Sun, 01/11/2009 - 2:59pm.

It sounds like he could really benefit from a GJ tube instead of just a G tube. It's a really easy proceedure. They put the same type of button in the stoma for the G tube, but it has a longer tube as well that goes into the intestines. This way you're bypassing the stomach all together so there is less vomiting usually (or in our case, none most of the time). The only down side is that you can't do bigger feeds. If he's already on continuous feeds, then it's not really a big change. If he isn't on continuous, if he gets bolus feeds, you can try moving him to continuous feeds first.
__________________

Courey mom to Aniyah, 4.5 and Linden, 20 mos. Linden has Mito complex III deficiency with slight deficiencies in complexes I and II. He is o2 and tube dependant.

www.lindenberriesandrosebuds.blogspot.com

I am so excited to hear from

Submitted by Jeanne on Sun, 01/11/2009 - 5:59pm.

I am so excited to hear from you. I am a RN (retired) and not a pediatric nurse,and I have mentioned j tube to my daughter but my question is, can this GJ tube be placed in a present Mic-Key....I think everyone was concerned if it required more surgery for another placement...I can hardly wait to find out more about this and see if this is what we can and should do....Thnks so much for responding...

Lils mom's picture

My daughter had CONSTANT

Submitted by Lils mom on Wed, 01/14/2009 - 2:45pm.

My daughter had CONSTANT vomiting even after her g-tube placment until she was put on elecare and then we decided on our own (against medical advise) that she can have NOTHING by mouth this ment no more speech therapy because everytime she has oral stemulation the next day was nothing but vomiting. She still vomits occationally but nothing compared to the 20X a day she was.

Before getting the vommiting under control on our own we were planning on doing the j-tube. We first talked about the G J-tube but we have found out that for a child that retches when they vomit (which our daughter does) they have a high change of vomiting the tube out of the intesten and then you have to take them in ASAP to radiology to be replaced so we had decided that if we did the J we would go strait to the J instead of trying the G J because my daughter does not do good with sedation and she had a high chance of vomiting the tube out, have to be under sedation to be replaced and then eventually go under again to get the J anyway. If your son vomits but does not retch to empty his stomache it would probably work for him. I would suggest talking with his GI to see if he thinks it would work for his situation.

 

Hope you find a salution. Have you tryed diff formulas?

__________________

Meredith wife to my wonderful Carlos

and mom to

Liliana 18months Leighs disease

and Triniti 5 Angelman Syndrome

Thank you so much for your

Submitted by Jeanne on Wed, 01/14/2009 - 6:43pm.

Thank you so much for your input....Charlie does actually wretch and has a very sensitive gag refles.Charlie is my grandson but I think my daughter has tried a different formula...now he is on NutrenJunior.  I have not heard of Elecare , but will definetly pass this on to them.   How did you know that your child had wretched the j tube back up into the stomach?    I am thinking prob listening for placement.....Thanks again for some suggestions...

 

 

Anthonys mom's picture

My son vomited alot for over

Submitted by Anthonys mom on Thu, 01/15/2009 - 11:48pm.

My son vomited alot for over a year. Doctors said it was normal in kids with mito. Until I went to a conference over the summer. There I met a doctor who recommended some tests. We found a GI Doctor and he did them. He ended up having EE (eosinophilic esophigitus) We put him on ELECARE and a restricted diet following the care of the doctor. He is doing alot better. Still some episodes of vomiting but much better from everyday to now 2 or three times a month and we just started it 3 months ago. They think these episodes are cyclic vomiting. Find a Good GI or one who is willing to do testing seeing you are willing to put him through it.
Anthonys mom's picture

My son vomited alot for over

Submitted by Anthonys mom on Thu, 01/15/2009 - 11:48pm.

My son vomited alot for over a year. Doctors said it was normal in kids with mito. Until I went to a conference over the summer. There I met a doctor who recommended some tests. We found a GI Doctor and he did them. He ended up having EE (eosinophilic esophigitus) We put him on ELECARE and a restricted diet following the care of the doctor. He is doing alot better. Still some episodes of vomiting but much better from everyday to now 2 or three times a month and we just started it 3 months ago. They think these episodes are cyclic vomiting. Find a Good GI or one who is willing to do testing seeing you are willing to put him through it.

Thanks for some input...I

Submitted by Jeanne on Fri, 01/16/2009 - 9:24am.

Thanks for some input...I think looking into the Elecare is definetly where we could start and talk to the MD some more. it's so great to talk to someone who has been there..

Anthonys mom's picture

Just checking to see how

Submitted by Anthonys mom on Sun, 02/08/2009 - 12:04am.

Just checking to see how things are going?
lorimar's picture

Hi,Things are about the

Submitted by lorimar on Sun, 02/08/2009 - 5:08pm.

Hi,Things are about the same, you know one day at at a time How are you? How is Anthony? I keep you both in my prayers.The whole group at MitoAction is wonderful.

My son has been seen at

Submitted by khawlah on Sat, 02/14/2009 - 8:35pm.

My son has been seen at Kennedy Kreiger in Baltimore for the past year. they are the doctors who started us looking into mito. We have been sent on NY for more testing but they are very comfortable with mito. They don't specialize in mito but are very comfortable with it. I have met one other lady in the hospital whose daughter has mito and all her doctors are at KKI.
Anthonys mom's picture

Well we are just taking it

Submitted by Anthonys mom on Tue, 02/17/2009 - 12:02am.

Well we are just taking it day by day. He fatigues so easily. Sleeping about 7 hours on average. I love the little guy so much. I just wish I knew what I could do to help him. We are getting to start Preschool in the fall.

Koltonsmom's picture

jeanne, We live in Maryland

Submitted by Koltonsmom on Wed, 03/11/2009 - 2:49pm.

jeanne, We live in Maryland and my son has seen a genetic doctor at University of Md. Hospital and also at Kennedy Kreiger. The doctor at KKI wasn't accepting patients at the time, but consulted with Kolton's neurologist on numerous occasions. He was actually the one to diagnose Kolton with complex 1. Good luck!!!

There is a new neurogentics

Submitted by khawlah on Fri, 03/13/2009 - 7:32pm.

There is a new neurogentics doctor at Kennedy Kreiger as of July. That is who picked up my son's file and did the muscle biopsy to get a mito dx. I have been very happy at KKI. My son gets a variety of services there and he has really done very well this past year.

I should add that we just

Submitted by khawlah on Fri, 03/13/2009 - 7:36pm.

I should add that we just got hooked into a pediatric practice that is seeing kids from Kennedy Kreiger. The doctor we are seeing is at Bayview/ Johns Hopkins and is very comfortable with all my son's issues. As, I said we are new with him but he is works closely with the KKI doctors and I get the feeling that what he does not know he is very willing to learn.