kidney disease with mito disease?

[Guest guest]

Do any of your children have kidney disease with the mito disease.

My son has not yet been diagnosed, but the Genetists at CHOP believe

it is a mito disease. His muscles have been affected more and more

each day, his breathing is worse. He still goes to school most days

but is very tired. He also has innercranial calcifications,

including the basal ganglia and some cerebellar atrophy.

Debbi Beck

[Guest guest]

Hi

My son Colby, spent 2 weeks in the hospital when he was 4, with a bacterial infection. They found a bladder infection, but couldn't find the right antibiotic to treat it. He was really skinny then. The doctors told us that boys don't get bladder infections unless something was wrong. Well, they did testing after he was well, and he had kidney reflux. After they went in thru surgery, they found a stricture on one of his ureters, which in time I think would have affected his kidneys. They were surprised that he didn't get sick sooner. It seems as the older Colby gets, these weird diagnosis' come up. He's not regressing on the outside where you can see with the eye, but more on the inside, where subtle and not so subtle, things keep happening it seems. So that's as close, so far, as he has come with the kidneys.

Take Care

mom to Colby,14,COXIV,LCHAD,ACC,ADHD ,hypothroidism and osteopenia. Chad, 16, healthy, Caleb, 11, also healthy> >Reply-To: Mito >To: Mito >Subject: RE: kidney disease with mito disease? >Date: Sun, 18 Apr 2004 10:29:20 +0000 > >My daughter who we haven't had tested yet had Kidney reflux. You usually get >ideas of this when u have repeated UTI or kidney infections. They can tell >by a test called VCUG whihc is not very pleasant. There are different >grades. She had surgery last year. It is 95% effective. Not sure what kind >of kidney problems u r having but I wish u luck and sorry he is wekaer. > > > > > > > >Reply-To: Mito > >To: Mito > >Subject: kidney disease with mito disease? > >Date: Sat, 17 Apr 2004 15:57:58 -0000 > > > >Do any of your children have kidney disease with the mito disease. > >My son has not yet been diagnosed, but the Genetists at CHOP believe > >it is a mito disease. His muscles have been affected more and more > >each day, his breathing is worse. He still goes to school most days > >but is very tired. He also has innercranial calcifications, > >including the basal ganglia and some cerebellar atrophy. > >Debbi Beck > > > > > >_________________________________________________________________ >Is your PC infected? Get a FREE online computer virus scan from McAfee® >Security. http://clinic.mcafee.com/clinic/ibuy/campaign.asp?cid=3963 > > > >Please contact mito-owner with any problems or questions. >

[Guest guest]

Hi

My son Colby, spent 2 weeks in the hospital when he was 4, with a bacterial infection. They found a bladder infection, but couldn't find the right antibiotic to treat it. He was really skinny then. The doctors told us that boys don't get bladder infections unless something was wrong. Well, they did testing after he was well, and he had kidney reflux. After they went in thru surgery, they found a stricture on one of his ureters, which in time I think would have affected his kidneys. They were surprised that he didn't get sick sooner. It seems as the older Colby gets, these weird diagnosis' come up. He's not regressing on the outside where you can see with the eye, but more on the inside, where subtle and not so subtle, things keep happening it seems. So that's as close, so far, as he has come with the kidneys.

Take Care

mom to Colby,14,COXIV,LCHAD,ACC,ADHD ,hypothroidism and osteopenia. Chad, 16, healthy, Caleb, 11, also healthy> >Reply-To: Mito >To: Mito >Subject: RE: kidney disease with mito disease? >Date: Sun, 18 Apr 2004 10:29:20 +0000 > >My daughter who we haven't had tested yet had Kidney reflux. You usually get >ideas of this when u have repeated UTI or kidney infections. They can tell >by a test called VCUG whihc is not very pleasant. There are different >grades. She had surgery last year. It is 95% effective. Not sure what kind >of kidney problems u r having but I wish u luck and sorry he is wekaer. > > > > > > > >Reply-To: Mito > >To: Mito > >Subject: kidney disease with mito disease? > >Date: Sat, 17 Apr 2004 15:57:58 -0000 > > > >Do any of your children have kidney disease with the mito disease. > >My son has not yet been diagnosed, but the Genetists at CHOP believe > >it is a mito disease. His muscles have been affected more and more > >each day, his breathing is worse. He still goes to school most days > >but is very tired. He also has innercranial calcifications, > >including the basal ganglia and some cerebellar atrophy. > >Debbi Beck > > > > > >_________________________________________________________________ >Is your PC infected? Get a FREE online computer virus scan from McAfee® >Security. http://clinic.mcafee.com/clinic/ibuy/campaign.asp?cid=3963 > > > >Please contact mito-owner with any problems or questions. >

[Guest guest]

Hi

My son Colby, spent 2 weeks in the hospital when he was 4, with a bacterial infection. They found a bladder infection, but couldn't find the right antibiotic to treat it. He was really skinny then. The doctors told us that boys don't get bladder infections unless something was wrong. Well, they did testing after he was well, and he had kidney reflux. After they went in thru surgery, they found a stricture on one of his ureters, which in time I think would have affected his kidneys. They were surprised that he didn't get sick sooner. It seems as the older Colby gets, these weird diagnosis' come up. He's not regressing on the outside where you can see with the eye, but more on the inside, where subtle and not so subtle, things keep happening it seems. So that's as close, so far, as he has come with the kidneys.

Take Care

mom to Colby,14,COXIV,LCHAD,ACC,ADHD ,hypothroidism and osteopenia. Chad, 16, healthy, Caleb, 11, also healthy> >Reply-To: Mito >To: Mito >Subject: RE: kidney disease with mito disease? >Date: Sun, 18 Apr 2004 10:29:20 +0000 > >My daughter who we haven't had tested yet had Kidney reflux. You usually get >ideas of this when u have repeated UTI or kidney infections. They can tell >by a test called VCUG whihc is not very pleasant. There are different >grades. She had surgery last year. It is 95% effective. Not sure what kind >of kidney problems u r having but I wish u luck and sorry he is wekaer. > > > > > > > >Reply-To: Mito > >To: Mito > >Subject: kidney disease with mito disease? > >Date: Sat, 17 Apr 2004 15:57:58 -0000 > > > >Do any of your children have kidney disease with the mito disease. > >My son has not yet been diagnosed, but the Genetists at CHOP believe > >it is a mito disease. His muscles have been affected more and more > >each day, his breathing is worse. He still goes to school most days > >but is very tired. He also has innercranial calcifications, > >including the basal ganglia and some cerebellar atrophy. > >Debbi Beck > > > > > >_________________________________________________________________ >Is your PC infected? Get a FREE online computer virus scan from McAfee® >Security. http://clinic.mcafee.com/clinic/ibuy/campaign.asp?cid=3963 > > > >Please contact mito-owner with any problems or questions. >

[Guest guest]

Debbi,

The kidney is a high energy using organ. This seems to be affected

in a lot of the mito kids because of this. With it wasn't so

much a disease as trying to run the motor without enough gas.

Muscles are also high energy users. Also eyes for are high

energy users.

also has problems breathing and some brain atrophy. They told

us they didn't know which came frist the loss of using the muscles or

the brain shrinking. The brain shrinks if those part are not used?

See if you can work with the school to get breaks or more breaks

during the day. has break times scheduled throughout his

school days. If he is panting they will put him on his Oxygen.

Sorry, things aren't going well.

Twana

> Do any of your children have kidney disease with the mito disease.