new,notsure,lurking and learning

[Guest guest]

Hello, I am new to this subject...new as of our neurosurgeon talking

to us about it on wednesday the fifth of may. Im not knowing anything.

Im overwhelmed by the little bit im reading.

Im not even sure this is a road we will travel but our neurosurgeon

has thought about and wants us to go further with testing to see if it

answers some of my daughters symptoms and the questions we have about it.

We have had an MRI(actually many of them) we are scheduled next week

for a mylogram and a nerve test and then the neurologist will begin a

road to looking at mitochondria possiblities for us.

To be honest im scared to death, scared of the unknown, scared of my

daughters symptoms and the lack of explanation for any of them. My

daughter has cerebral palsy, gastroesaughagal reflux, neurogenic

bladder, no bowel control and a learning disability. She is having so

many little issues and troubles and no one can explain them nor do

they seem to really relate to her cp. Now she is experiencing

cicualtion issues, healing issues, recurrent infections, weakness,

pain and numbness and hypersensitiveity.

Not sure if im in the right spot and apologize for rambling, but am

searching for info and support and the knowledge that I am not alone.

I am a single mom with five super children who are the light of my

life and the biggest blessing one could ever wish for

thanks for listening, any feedback or replies would be appreciated.

Rosemarie

[Guest guest]

Rosemarie, First welcome to the group, this is a wonderful avenue for support, freindship, encouragment, avice, and crying.

I wish i had words of wisdom for you as you begin this rough journey,but all i can say is i am sorry that you are here, but i welcome you as a freind.

How old is your little one who is sick??

, Mom to Hailee suspected Mito, Sod/onh, addrenal insufficancies, closed spina bifida, muscle weakness, and epilipsy.

My little angel.

[Guest guest]

Rosemarie,

Welcome aboard! It is hard and overwhelming. Finding this group is

a great start for you. They are so knowlegdable and understanding.

Whatever you are going through or issues your daughter has, someone

here can probably relate! All of the issues you listed sound like

mito, but they also sound like a thousand other things. I am sure

that all other posibilities have been ruled out. It seems the road

to mito starts with ruling out everything else there is.

My daughter has learning disabilities, bowel issues, infection

issues and about all of the other things you listed. any specific

questions you have please ask. I am sure you have found the UMDF

site, but if not, it has tons of info! (www.umdf.org). I too am I

single mom (of three-2.5, 4 and 13) It is tiring, but when you look

into their eyes you know it is soooo worth it!

Again, welcome to the group! Dawn