New Diagnosis - Where you can go for help

When my 6 year old daughter Elise started having seizures at 7 months old, you can imagine I was scared. At the time, the doctors we had were not that great. Because of insurance plan restraints we were stuck with a system that cared by prevention, but once you actually had a problem, there was not much expertise. They were not even acknowledging she was having seizures. I started searching the Internet for answers, and have found some reliable ways to get help. Providentially our insurance changed the day she had to be hospitalized. We have experienced many times since, that mother's or father's intuition told us something more serious was happening or a different course of action should be taken, despite what the specialists were telling us. It was this intuition that helped us find the treatment for our daughter's seizures was metabolic instead of chemical after trying many drugs with no success. It also led us to search for a Medical Center outside of our state specializing in our children's disease after seeing specialists and bringing our then baby Paris to the finest hospitals our state had to offer. We found these things on the Internet.

1. For reliable information search for the specific disease or condition's foundation website. Foundations are organizations that raise money for research. Their websites list symptoms, often have Newsletters, resources, and parent chats, you may even be able to find a local support group

2. Yahoo Groups has many "Parents of specific disease chat groups", I have found this to be extremely helpful because you are connected to the people of all stages and experiences of the condition. You can find out about doctors from others that see them. you can encourage and mourn with each other. I often inquire if anyone has experienced a new symptom and what seems to work best.

3. Search for specialized Medical Centers - we go the Cleveland Clinic 1-2 times a year where they have specialists in every region of the body that have actually treated our children's specific disease. I found out they are a "hub" for Mitochondrial disease, it has been worth the trip!

Thankful by Retrospect - poems about Ellie

As I am beginning to reflect on all that I am thankful for this Thanksgiving, there is much for me to show gratitude to The Creator for. One of the biggest blessings is the health of my 6 year old daughter Elise this year. She has come so far from a little girl who used to have frequent pneumonia, seizures, and a laundry list of other serious symptoms due to her Mitochondrial disease. This year we are still dealing with her daily headaches, muscle pain, changing vision and moments of confusion, but I have to be thankful for that in retrospect. She is the most delightful, sweet little girl, I'm not sure what the future holds for her, but I'm enjoying and trying to remember to treasure the "right now". I thought of the following writings I took down about her 3 years ago, once reflecting on her and once after taking her to the ER after another episode of seizure activity. She looked like such an angel that night as she was wearing a very pretty white nightgown and had fallen in a deep sleep in the back of the car. I am thankful that this year I haven't had to feel this way, although it will never leave me.

Ellie
Let me tell you a story of a little girl who when she was conceived, God gave her an unexplainable happiness that touches everyone who is placed in her path.
Those eyes, they beckon you, and once you gaze into them you cannot look away, and when the smile comes you are lost and belong to her forever.
In her presence, she makes you feel good about yourself because you can see well in yourself for loving one so special without any effort.
Let me tell you about my Ellie.

The Journey of a Sick Child
She’s sleeping now, rock-a-bye.
She can’t feel the pain, or see me cry.
The ride must have lulled her to sleep.
This course I wish not to keep.

Her body is still. Her eyes are blind.
I have this route etched out in my mind.
If I don’t continue on, the tremors will return.
Why, God, must you be so stern?

Her vision in my rear-view mirror is a blur.
I must be composed for her.
I’ll park the car and wipe my eyes,
Open her door, and convince myself I’m being wise.

She’s dreaming in her white night gown,
While strangers begin holding her down.
Why wake such an angel with needles and lights,
While I stand by and say it’s all right?

Why does she have to know evil so young?
Why can’t enough comfort come from my tongue?
Why can’t I be the one who has this challenge to fight?
Why does this always happen at night?

She’s exhausted now, rock-a-bye.
Tears are pasted to her face from the cry.
The nurses and doctors keep her from sleep.
This course I wish not to keep.