Can sugar be the cause of Mito?

[Guest guest]

Kim,

Listen to your mother's instinct. You know what is best for your child. I liked the e-mail which suggested listening politely and then rolling your eyes when the do-gooders have disappeared.

The sugar one is a 'funny one'. I have been told that my daughter's have dysautonomia by Dr Boles. I believe that too much sugar can cause a problem in them BUT when they are becoming ill and showing signs of going into a dysautonomia crisis caused by other factors ie. virus, becoming dehydrated, exposure to a very cold wind or hot sunshine, being over-tired etc, a sugary drink which also contains caffeine, example 'Mountain Dew or "Red Bull' actually stops them from becoming ill.

Hope this helps,

L.

Can sugar be the cause of Mito?

I am a little frustrated after a phone call I had from a close relative suggesting if I take my kids off sugar 100% that their symptoms could disappear. What is your take on this or what do the Mito specialists say concerning sugar and Mito? I know there are some Mito kids who cannot have sugar without crisis, but is it possible for some to actually need sugar to not go into crisis? My brother has heart arrhythmias after consuming sugar and I have had some arrhythmias following large intakes of sugar, but nothing more severe that I know of. I just can't believe that withholding sugar from Asenath could cure things such as CNS Vasculitis, strokes, seizures, disautonomia, low muscle tone, etc. And it would be impossible/or perhaps quite difficult, to take all sugar from Zipporrah as she uses Neocate which has corn syrup solids in it. My relative told me if they were his kids he would be trying ANYTHING to cure them and so now I feel as if I am under the gun to try to withhold sugar for 2-4 weeks or suffer the next conversation and attitude of thinking I am unwilling to try anything.. I just HATE it when people try to offer me quick fixes on our kids' suffering. But again, there is a nagging at the back of my head that says, "What if?" You know? This is not the first time a quick fix has been offered to me and I am sure it will not be the last, but boy it bugs me when people are SOOO convinced they are right and I need to do so and so... What is you guys' take on this? I am open to hear both sides and what the docs say about sugar and Mito. I also plan to research this one!

Darla: mommy to: Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, g-tube, disautonomia issues, hypotonia, heat/exercise intolerance, oxygen use, asthma, daily vomiting for some reason... Zipporrah (7 mon.)Mito, SLE's, sensory issues, G-tube, asthma, mild tracheomalacia, tracheal ring, disautonomia, major swallow problems... and the other kiddosPlease contact mito-owner with any problems or questions.

Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com

Please contact mito-owner with any problems or questions.

[Guest guest]

Darla,

I think it is very easy for people who have not walked in our shoes to sit back and say what they would do. It's like the people that don't have any kids, they are the experts on how to raise them. If you want to try withholding sugars, why not discuss it with the doctor first. I can't see how taking sugars out of the diet can possibly cure Mito. If it were that simple then no one would have to suffer with this horrible demon. You are doing a fine job with your girls and your family. Don't let someone that really doesn't have a clue as to what it is all about put any doubts in your head. Have they offered to do any research or read anything about Mito. People like this really burn my fanny!!!!!!

Just my two cents worth, for what it is worth,

Kathy, grandma to Audrey, 33 mos

[Guest guest]

Darla if I take sugar away from my kids they would be dead. They are severe hypo glycemic and require sugar be added in the form of complex carbs and in a crisis a good old fashion spoon full of sugar! Be careful with this.

big hugs to you,

O and crew - Kira,, and Krisalynn Mitochondrial Myopathy-MIDS Maternally Inherited Dysautonomia- NVD ( Nuro Vascular Dystrophy) and dad Enrique

Visit our web page: WWW. caringbridge.org/ca/mitooggo

Help support my sister in her new business at : Come and see what's NEW! http://www.youravon.com/elleenmiller Your AVON representative (Sign in passcode: ElleensAVON if you are signing in for the first time :-)

[Guest guest]

I am a little frustrated after a phone call I had from a close relative suggesting if I take my kids off sugar 100% that their symptoms could disappear. What is your take on this or what do the Mito specialists say concerning sugar and Mito? I know there are some Mito kids who cannot have sugar without crisis, but is it possible for some to actually need sugar to not go into crisis? My brother has heart arrhythmias after consuming sugar and I have had some arrhythmias following large intakes of sugar, but nothing more severe that I know of. I just can't believe that withholding sugar from Asenath could cure things such as CNS Vasculitis, strokes, seizures, disautonomia, low muscle tone, etc. And it would be impossible/or perhaps quite difficult, to take all sugar from Zipporrah as she uses Neocate which has corn syrup solids in it. My relative told me if they were his kids he would be trying ANYTHING to cure them and so now I feel as if I am under the gun to try to withhold sugar for 2-4 weeks or suffer the next conversation and attitude of thinking I am unwilling to try anything.. I just HATE it when people try to offer me quick fixes on our kids' suffering. But again, there is a nagging at the back of my head that says, "What if?" You know? This is not the first time a quick fix has been offered to me and I am sure it will not be the last, but boy it bugs me when people are SOOO convinced they are right and I need to do so and so... What is you guys' take on this? I am open to hear both sides and what the docs say about sugar and Mito. I also plan to research this one! Darla: mommy to: Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, g-tube, disautonomia issues, hypotonia, heat/exercise intolerance, oxygen use, asthma, daily vomiting for some reason... Zipporrah (7 mon.)Mito, SLE's, sensory issues, G-tube, asthma, mild tracheomalacia, tracheal ring, disautonomia, major swallow problems... and the other kiddosGet more from the Web. FREE MSN Explorer download : http://explorer.msn.com

[Guest guest]

I really don't know anything concrete or from the Drs, but I do know

that my son is getting very little sugar and it has made no difference

in his symptoms. He used to drink 2 quarts of kool-aid a day and then

because of GI problems (probable dumping) we switched to sugar free

drinks and nothing has changed. In fact since we made the switch we

have seen major declines (pretty sure it's not related). So I don't

think it has any effect.

Hope that helps

PS I know about the quick fix thing, we hear them from friends family,

and even complete strangers. It's definitely harder when it is family

though. Hang in there

[Guest guest]

Unless you heard this from a doctor it would be absurd to try this!

I really don't care about attitudes and/or family that doesn't understand. Its my children that come first!

I do think that if withholding sugar was a "good" idea, Dr.W. would have already suggested it. So sorry you have to deal with attitudes. I can tell you must be growing tired and desperate, otherwise I doubt you'd be considering following suggestions from someone with no medical background.

Sorry to sound so harsh. I just don't like family members trying to "fix" something they know nothing about. Most of my family wont even call to check on my boys. When they do and they ask "how they are", it's like a rhetorical question......I feel like I'm in the wrong for just answering them. They veer away from my answer or try and give me a solution to my "problems".. These are people who have never seen my children in crisis and have no idea what Mitochondria really is (even though without it, they themselves would die). It's just nonsense for anyone who has never worked on a car to try and fix a blown engine.. Make sense?????

PLEASE don't feel obligated to please family members. If I went through life trying to please my uninformed (for lack of better words) family/friends, I'd be forever in a rut. It's just not meant for everyone to understand our children's disease. I will leave it at that.. Bottom line is, go with what YOU feel is right. YOU are with them every day. YOU see what works and doesn't work. NO need to subject them to trial and error for someone else's gain.

As for your relative that said they'd try anything if it were "them"....

Do they think you haven't? Would they still try Anything if it risked their life? Sounds like someone speaking out of ignorance. I'd take that offensively if it were me. I mean, you are taking them to the MAYO clinic and if that doesn't qualify for top of the line care, then nothing does.

example:

My poor mother is trying to "fix" Carsen's bone marrow problem by giving him vitamins or something nutritionally...

She actually means well but just has no idea about what we are really dealing with.

Take care and keep us posted on the girls,

Krystena s

Can sugar be the cause of Mito?

I am a little frustrated after a phone call I had from a close relative suggesting if I take my kids off sugar 100% that their symptoms could disappear. What is your take on this or what do the Mito specialists say concerning sugar and Mito? I know there are some Mito kids who cannot have sugar without crisis, but is it possible for some to actually need sugar to not go into crisis? My brother has heart arrhythmias after consuming sugar and I have had some arrhythmias following large intakes of sugar, but nothing more severe that I know of. I just can't believe that withholding sugar from Asenath could cure things such as CNS Vasculitis, strokes, seizures, disautonomia, low muscle tone, etc. And it would be impossible/or perhaps quite difficult, to take all sugar from Zipporrah as she uses Neocate which has corn syrup solids in it. My relative told me if they were his kids he would be trying ANYTHING to cure them and so now I feel as if I am under the gun to try to withhold sugar for 2-4 weeks or suffer the next conversation and attitude of thinking I am unwilling to try anything.. I just HATE it when people try to offer me quick fixes on our kids' suffering. But again, there is a nagging at the back of my head that says, "What if?" You know? This is not the first time a quick fix has been offered to me and I am sure it will not be the last, but boy it bugs me when people are SOOO convinced they are right and I need to do so and so... What is you guys' take on this? I am open to hear both sides and what the docs say about sugar and Mito. I also plan to research this one!

Darla: mommy to: Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, g-tube, disautonomia issues, hypotonia, heat/exercise intolerance, oxygen use, asthma, daily vomiting for some reason... Zipporrah (7 mon.)Mito, SLE's, sensory issues, G-tube, asthma, mild tracheomalacia, tracheal ring, disautonomia, major swallow problems... and the other kiddosPlease contact mito-owner with any problems or questions.

Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com

[Guest guest]

Darla,

Although I completely understand others "quick fixes" or the lovely saying "they will grow out of it", we need to understand this is impossible. Mito comes from a cellular level, you are born with it. I do not believe there is anything you can do to prevent it from happening, and there is no way to cure it. We, as parents and some patients, need to listen to the doctors who specialize in this disease. I am sure if Dr. Whiteman knew that taking sugar out of the girls diet would help, he would have offered it a long time ago. It is true that many people with mito have sugar issues, it is a secondary problem caused by the mito. If your girls have never had sugar issues, I would not want to mess with anything. Gracie has hypoglycemia and was on Neocate, and did just fine with it. She also eats some sugar, and if it is controlled she is fine. As far as your unsolicited advice is concerned, maybe you can get ahold of some UMDF brochures. They give a breif explanantion to this horrible disease. Also, hold in there you are doing everything you can at this point. People who have not been there, just do not know (but some think they know everything anyways.) Best of wishes to you, keep holding your head up.

[Guest guest]

I would ask this close relative for documented proof (from someone other than him) that this has worked in others. If he continues to bug you, I would let him know that you would be willing to listen to him as soon as he receives an education in medical genetics and metabolic disorders. Maybe give him the UMDF website to get him started on his journey. Never, ever discount what you are doing as a parent. You are doing everything you can for your children and if something as simple as completely removing sugar from the diet could help, I am sure that would have been discovered a long time ago.

Kim - Mom to and Lindsey

Can sugar be the cause of Mito?

I am a little frustrated after a phone call I had from a close relative suggesting if I take my kids off sugar 100% that their symptoms could disappear. What is your take on this or what do the Mito specialists say concerning sugar and Mito? I know there are some Mito kids who cannot have sugar without crisis, but is it possible for some to actually need sugar to not go into crisis? My brother has heart arrhythmias after consuming sugar and I have had some arrhythmias following large intakes of sugar, but nothing more severe that I know of. I just can't believe that withholding sugar from Asenath could cure things such as CNS Vasculitis, strokes, seizures, disautonomia, low muscle tone, etc. And it would be impossible/or perhaps quite difficult, to take all sugar from Zipporrah as she uses Neocate which has corn syrup solids in it. My relative told me if they were his kids he would be trying ANYTHING to cure them and so now I feel as if I am under the gun to try to withhold sugar for 2-4 weeks or suffer the next conversation and attitude of thinking I am unwilling to try anything.. I just HATE it when people try to offer me quick fixes on our kids' suffering. But again, there is a nagging at the back of my head that says, "What if?" You know? This is not the first time a quick fix has been offered to me and I am sure it will not be the last, but boy it bugs me when people are SOOO convinced they are right and I need to do so and so... What is you guys' take on this? I am open to hear both sides and what the docs say about sugar and Mito. I also plan to research this one!

Darla: mommy to: Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, g-tube, disautonomia issues, hypotonia, heat/exercise intolerance, oxygen use, asthma, daily vomiting for some reason... Zipporrah (7 mon.)Mito, SLE's, sensory issues, G-tube, asthma, mild tracheomalacia, tracheal ring, disautonomia, major swallow problems... and the other kiddosPlease contact mito-owner with any problems or questions.

Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com

[Guest guest]

Darla,

I have heard that mito and diabetes are linked but not that

diabetes causes mito. Everyone has an answer. I have learned to say

thank you for your advice and do the proverbial eye roll when they

leave. You have been dealing with the best doctors in the country

and I would think it was that simple, you would have heard that by

now!Don't let other's who have no true mito knowledge make you

second guess yourself.

Dawn