Re: Re: Mito and Tachycardia/another vent

[Guest guest]

I agree with Dawn. It frustrates me so much when they assume everything is due to the mito (wich it probally is), and not needing treatment. I have seen Grace's blood pressure as high as 210/120, that is a potential stroke level for an adult, Grace is 2! Her normal blood pressure is usually 110/80, and always higher than mine. So far nobody is interested in treating this. I don't get why adults get treatment for blood pressure, because they are worried about damage,but it is not necessary to treat a two year old. I would think the risk of damage is greater, because she has a lot of life to live. She also has the problems with a very high heart rate. I think I will bring it up with Dr.Cohen next month, hopefully he will listen.

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[Guest guest]

In reading this yes it can be frustrating to why doctors don't do something.

But it may be because they are honestly stumped in how to treat a young

child with the symptoms than an adult carries. And yes they may be afraid

to admit they don't know what else to do. I would rather have that honesty

than saying well because it is related to the mito nothing can be done. I

will be eager to hear what Dr. Cohen says on this matter. You might say

that we know you as a doctor is very busy with mito patients but I am really

trying to understand this situation.....and then go in to your explanation.

As I've said, Leah doesn't have all the symptoms all the children have,

so I read with putting that information in the back of my brain or I even

print things out for future use in case she ever gets to that point in needing

this information.

Nerenhausen

mom to Leah

wrote:

I agree with Dawn. It frustrates me so much when they assume everything

is due to the mito (wich it probally is), and not needing treatment. I have

seen Grace's blood pressure as high as 210/120, that is a potential stroke

level for an adult, Grace is 2! Her normal blood pressure is usually 110/80,

and always higher than mine. So far nobody is interested in treating this.

I don't get why adults get treatment for blood pressure, because they are

worried about damage,but it is not necessary to treat a two year old. I

would think the risk of damage is greater, because she has a lot of life

to live. She also has the problems with a very high heart rate. I think

I will bring it up with Dr.Cohen next month, hopefully he will listen.

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Please contact mito-owner with any problems or questions.

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