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Raising Special Needs Kids Raising Special Needs Kids

Mito??

Posted by on Sep. 7, 2013 at 9:31 PM
  • 14 Replies

Does anyone here have a child with Mitochondrial disease? My daughter has multiple medical issues but no real diagnosis. I have been doing some research on things and Mito keeps coming up and fits her but its such a broad range its hard to tell. I cant really even go ask a dr to do the testing either because they are trying to blame me for her medical issues so if I go demanding invasive testing it will not end well. We feel like she may have something genetic and are still waiting on her micro array but Im scared what will happen if that doesnt find anything. I love my daughter and I accept her for who she is but its very hard to not know why she has the problems she has. Just to sum her up a bit, Gtube, failure to thrive which has no known cause, DGE, urinary reflux, GERD and Nissen, orthopedic issues, she just saw a sleep specialist because of a video I have of her breathing funny in her sleep and they say she is doing something called paradoxial breathing which in a 2 year old is not normal so she may have sleep apnea, Speech delay and communication delay, and sensory issues.

It just kills me that we have no answers and I cant do anything about it.

by on Sep. 7, 2013 at 9:31 PM
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Replies (1-10):
mandee1503
by Amanda on Sep. 7, 2013 at 10:13 PM
*hugs* no experience but here's a bump.
girlymom26
by on Sep. 7, 2013 at 11:15 PM
Thank you, its just part of this never ending fight for answers for my baby. and OMG featured....lol my first, Im kinda excited.
Quoting mandee1503:

*hugs* no experience but here's a bump.

Elyssa414
by Elyssa on Sep. 8, 2013 at 2:08 AM
1 mom liked this
I'm sorry, I don't have any personal experience.

Are they saying you are making her sick? How? That seems like something that would be reported to CPS of they really thought that. You don't have to demand an invasive test, but you can bring it up, and see what the doctor says... Plus, if you aren't making her sick, you have nothing to fear- we all have to demand the best treatment for our children.
darbyakeep45
by Darby on Sep. 8, 2013 at 7:09 AM

Hugs mama!  I don't have experience in this, but I'm confident one of these moms will:)  Why do they blame her medical issues on you?  That just makes no sense.

Bluecalm
by Silver Member on Sep. 8, 2013 at 7:23 AM
My son has a genetic deletion so he is treated for a mito deficiency with supplements. I don't know much about mito disease, but I think it has to do with energy produced by the body. Your dd's symptoms sound more like a genetic deletion.
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Mipsy
by Chelle on Sep. 8, 2013 at 8:25 AM
1 mom liked this
It does have to do with energy produced (or lack thereof honestly).

My son is being treated for mito and in a genetic study for it. He's started the mito cocktail and they follow protocols etc.


Quoting Bluecalm:

My son has a genetic deletion so he is treated for a mito deficiency with supplements. I don't know much about mito disease, but I think it has to do with energy produced by the body. Your dd's symptoms sound more like a genetic deletion.
girlymom26
by on Sep. 8, 2013 at 2:11 PM

 it is something they report to CPS and I have been fighting it for 7 months now. My kids are still in my care and they have no proof I have hurt her in any way (because I havent obviously) Its been really hard and its taking its tole on us all.

She is being tested for a genetic anomoly, she had her micro array blood work drawn last month on the 26th so were just waiting now. Im so scared of that that work up could hold, or maybe not tell us anything at all. Either way I love my baby and will fight for her the best I can. Its just really hard when none of the issues really add up to anything specific.


Quoting Elyssa414:

I'm sorry, I don't have any personal experience.

Are they saying you are making her sick? How? That seems like something that would be reported to CPS of they really thought that. You don't have to demand an invasive test, but you can bring it up, and see what the doctor says... Plus, if you aren't making her sick, you have nothing to fear- we all have to demand the best treatment for our children.


 

mlogsdon
by on Sep. 8, 2013 at 2:24 PM
I agree with asking for testing anyway. If you aren't doing anything, and think there is another cause, then it would actually help both of you to know the truth.

Quoting girlymom26:

 it is something they report to CPS and I have been fighting it for 7 months now. My kids are still in my care and they have no proof I have hurt her in any way (because I havent obviously) Its been really hard and its taking its tole on us all.


She is being tested for a genetic anomoly, she had her micro array blood work drawn last month on the 26th so were just waiting now. Im so scared of that that work up could hold, or maybe not tell us anything at all. Either way I love my baby and will fight for her the best I can. Its just really hard when none of the issues really add up to anything specific.




Quoting Elyssa414:

I'm sorry, I don't have any personal experience.

Are they saying you are making her sick? How? That seems like something that would be reported to CPS of they really thought that. You don't have to demand an invasive test, but you can bring it up, and see what the doctor says... Plus, if you aren't making her sick, you have nothing to fear- we all have to demand the best treatment for our children.



 

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arkansasmama08
by Gold Member on Sep. 8, 2013 at 2:53 PM
Is it her pcp that's giving you a hard time or a specialist? If its the pcp maybe ask for a referral to a specialist and go from there. Of course it sounds like you've already for a handful of specialists on your list, so maybe ask them and see if they'll back you up.
I've had people tell me I'm the cause of my kids' issues but so far no cps, thank goodness. I would keep looking if you having found any answers yet. Good luck mama
Bluecalm
by Silver Member on Sep. 8, 2013 at 3:05 PM

Does the doctor want to report because of the failure to thrive? I've heard of that happening before. It sounds like you are taking her to specialists and seeking an answer. I agree, if it's the pediatrician who thinks it's you, I'd switch doctors.

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