Rookie from Maine needs help

Hey Kelly! I am not familar with that type.  However, our daughter Kate, passed away at 7 years old on 7/13/08 from the Mito Disease MELAS and she went through some of the same symptoms/problems Tucker is having. Tucker's is a different type and Kate's is always fatal.  We did not even know that Kate had this until they diagnosed her the week of her passing in Atlanta, GA.  After researching this horrible disease, she had a lot of the symtoms from the age of 2-3 years, but the most severe ones in just 3 months time before passing away.  I wish we had known and things would have made more sense to us and we would have done things differently.  My sister and I have had weird symptoms and been misdiagnosed so many times and also an Aunt and cousin.  After Kate was diagnosed, our illnesses now make sense to us and we just get through each day as best we can. 

Try to conserve his energy and get him to rest as often as possible.  We would often wonder why Kate would tire so easily or could not handle extreme hot or cold weather. She was always shorter than the other children and looking back, there are many things that now answer some of our questions.  But, Mito diseases are so complex and hard to understand.  I wish I could be of more help, but I feel like even though we don't have the same type in common, we are still mothers loving and caring for our children.  I will keep your family in my prayers and lean on the Lord for understanding and guidance. Feel free to contact me anytime.

Wendy Stephens

Toccoa, GA

wendys@windstream.net

www.caringbridge.org/visit/katestephens

Hi Kelly,

I think you've asked on behalf of all the rookies out there. I know you've mimicked all my questions regarding my grandson. My greatest worry at this stage is how to ensure that Max is comfortable: he is only 6 months old and can't speak for himself.

When did you first notice symptoms and what was your medical experiences? I'm asking because each day I realise how lucky we were with Max, because the doctors didn't think us paranoid and compared to some other cases I've read about we were lucky in that Max was diagnosed within 3 months.

May God be with you and protect you and your little ones.

h i      Kelly,    we are all Rookies I think, we just do the best wecan.  I pray for strength to make it another day.

  Sounds like you have your hands full. You are in the best place I think you can be in. Mass General Hospital....Dr. Simms is my doctor along with others. Pediatric I know, but it's hard to find adult doctors out there.... Would investing in a WE game help with that energy and anxiety? I'm sure it must be so hard, my name is Lori, I haven't been on the forum in a while...Just wanted to say hi. You are in my prayers.......God Bless.....Lori

Wow, it's been a long time since I posted that.... and it's taken me this long to find it again :) I hope to find you all well and enjoying the winter.  Thank you for your support! Tucker is doing well, we are verrrrry slowly getting the mito cocktail underway, and trying a blended diet. Ava is in the process now of undergoing some studies.  We have decided to start with gi and lab, and wait on the biopsy, I will probably opt to take her to Cleveland for a fresh sample.... WENDY! God Bless your heart!!! I can't even begin to imagine what your family has been through.  I am all ears about the "weird" medical concerns of you and your sister, my family has always called me a "walking medical mis-hap" ??? Coincodence? Maybe not ;)

I would love to stay in closer touch with you all, now that tech support has emailed me a password.  Thanks again for all your love and support! Blessings to you all! Kelly

Best way to be sure I hear you... thea.word@yahoo.com

Wow, it's been a long time since I posted that.... and it's taken me this long to find it again :) I hope to find you all well and enjoying the winter.  Thank you for your support! Tucker is doing well, we are verrrrry slowly getting the mito cocktail underway, and trying a blended diet. Ava is in the process now of undergoing some studies.  We have decided to start with gi and lab, and wait on the biopsy, I will probably opt to take her to Cleveland for a fresh sample.... WENDY! God Bless your heart!!! I can't even begin to imagine what your family has been through.  I am all ears about the "weird" medical concerns of you and your sister, my family has always called me a "walking medical mis-hap" ??? Coincodence? Maybe not ;)

I would love to stay in closer touch with you all, now that tech support has emailed me a password.  Thanks again for all your love and support! Blessings to you all! Kelly

Best way to be sure I hear you... thea.word@yahoo.com