Thursday, March 1, 2007

My Story

Reagan Leigh was born on March 21, 2007. She was full term and the picture of health. The first few months of her life were relatively normal. We were adjusting to the lack of sleep and slowly learning how to console a colicky baby. When Reagan was four months old we took her to see an ophthalmologist because she wasn’t making eye contact and her eyes would turn in. The doctor told us this was normal and she would probably grow out of it…her eyes were “healthy”. At this point we had noticed some delays in her development, but being first time parents, the signs weren’t that obvious to us. We just assumed that the delays were related to her eyes turning in. However, she was later diagnosed with a neurological condition called Cortical Visual Impairment. She has very limited vision and has already had cataract surgery on both eyes. When Reagan was five months old I witnessed an occurrence of twitches that concerned me and we took her in to a new pediatrician for evaluation. Immediately the doctor ordered testing and suspected seizures. Following testing, Reagan was diagnosed with a catastrophic seizure disorder called Infantile Spasms. It’s amazing how your whole life can change in the blink of an eye. These seemingly insignificant “twitches” were in fact very harmful to her development and continuously increasing. Reagan had hundreds of these seizures a day which caused her development to remain at a virtual standstill since her diagnosis. At one point, she was having, in excess of 1000 seizures a day. She has been on a myriad of drugs, both oral and injections. Our lives quickly became filled with doctor’s appointments, therapy sessions of all kinds, and endless barrages of testing. She is now on her fourteenth medication (Banzel) and it's the only one that has ever significantly decreased her seizures. After tons of genetic and metabolic testing that all came back normal, we finally decided to have a muscle biopsy to check for mitochondrial disorder and it came back positive for a defect in the Mitochondrial Complex I & IV. Our faith, family, and friends (many of which we've met online with similar stories to ours) have helped us through this trying time. We still hold out hope that Reagan's development will take off and we'll see great progress. We believe that through God all things are possible!

4 comments:

jamie said...

This makes me cry.
I have been there.
see my blog entitled "beginning of time"
*whew.

Melissa said...

Hi. I just found your blog accidentally and Reagan's story is eerily similar to my son's. Asher is five months old. His opthamologist thinks he may have Cortical Visual Impairment due to oxygen deprivation before he was born. He shows "classic" signs of CVI, but we are still holding out hope that this is just a "delay."

Within the last few weeks Asher has begun having strange shaking spells, which are becoming more severe and more frequent. His opth referred him to a neuro for an evaluation. I don't know if these movements are seizures, but they certainly don't seem normal. Asher is my fifth and this is unlike anything my other four kids did as babies.

I would love more details about your story, if you don't mind sharing. I'd love to know more about Reagan's vision, her seizures, testing, diagnosis, cause... basically anything you can tell me would be helpful.

If you have the time, you can email me at r_m_millward@yahoo.com

You can also visit my blog at www.withasmile.wordpress.com

Thanks!
Melissa :)

Cjengo said...

It's amazing reading how each persons story starts when dealing with a child with seizures. You are so right that your life can change in the blink of an eye.

Steve Zarren said...

Hi ,
I am a former sufferer of dystonia and want to offer you my support if you are still struggling with this awful disorder or another movement type of neurological disorder.

I have put many years of my life into helping dystonia sufferers find relief, and through my efforts was able to get a medical study done at Johns Hopkins Medical Center with the program that helped me.

It is my pleasure and privilege to work full time in helping dystonia sufferers find relief and get educated
on the health fundamentals that I have discovered that can make a huge difference on improving one's health.

I have been effective in helping dozens of dystonia sufferers find relief and have worked with those in
26 countries and 49 states. Please feel free to call me if you would like to learn more about my work
and how I have been helping others.

There is nothing more enjoyable than seeing those I work with find the relief and hope as I received many years ago.
For more information, please visit my website at http://www.dystoniadisease.net.
Thank you.
Steve Zarren