MELAS anybody out there!

[dland8]

My 16 year old daughter has recently been diagnosed highly suspect of MELAS She was almost perfectly healthy until Jan 1st 2007 She is deteriorating rapidly and despite all the test that have mostly been inconclusive and four and a half months in hospital it would appear nothing can be done for her She has been in ICU three time this year with status epilepticus Is there anyone out there who has the disease and can tell me what I can expect Doctors are trying but not very helpful I'm not sure if I am a mother in denial or they have the incorrect diagnosis but one thing I know as a mother my daughter is fading fast and I feel helpless.:confused:

[Wheelin Rev]

My 16 year old daughter has recently been diagnosed highly suspect of MELAS She was almost perfectly healthy until Jan 1st 2007 She is deteriorating rapidly and despite all the test that have mostly been inconclusive and four and a half months in hospital it would appear nothing can be done for her She has been in ICU three time this year with status epilepticus Is there anyone out there who has the disease and can tell me what I can expect Doctors are trying but not very helpful I'm not sure if I am a mother in denial or they have the incorrect diagnosis but one thing I know as a mother my daughter is fading fast and I feel helpless.:confused:
Sorry I had to meet you this way but I am 51 year old male with MELAS. I would like for you to do two things.

1. Visit my "MELAS Information (http://blogs.datm.org/?page_id=22)" page (http://blogs.datm.org/?page_id=22). Read about the Mito Cocktail (http://blogs.datm.org/?page_id=23) (http://blogs.datm.org/?page_id=23) and the Mito Links (http://blogs.datm.org/?page_id=24) (http://blogs.datm.org/?page_id=24). I have listed hypertext words you can simply click on or the actual URL in case you need to cut-n-paste the web address in to your web browser.

2. On the Mito Links page mentioned above in action 1, contact any organizational references and ask LOTS of questions. Alternately, ask specific questions here for everyone here to help you with getting the correct answers. Finally, if you would like, feel free to contact me privately via this board's messaging functions but please let me know your first name and general location. Perhaps you are close to an exisiting clinic or support group that could also be of assistance to you.

All that said and speaking from experience, if the main symptoms did not appear until January 1st of 2007, seeing the "right" medical professionals that can accurately make a correct diagnosis the first time in that time frame; you would have to of seen very specific doctors at specific clinics and/or hospitals in very specific cities such as Atlanta, Cleaveland and New York if on the east coast of the U.S. Time turnarounds from these specific specialists takes a long time. For my first appointment just to begin seeing one of these types of specialist required a 3 month wait. Followup tests (out patient hospital) took another 3 months and getting the muscle biopsy test results all completed was another 3 months. Have you already been to these "mito specialists" as we know them by?

In closing, my entire online ministry at http://datm.org has changed its mission to that of interacting with other "mito families" and "blogging" about my mito journey. Please feel free to look around there two. One final closing note, a serious but true fact, is that MELAS is a maternally inherited defective gene. Only the mother can pass it on. My daughter, even though I have MELAS, in all likelyhood would not have MELAS. Testing is the only way to know and without a medical need to perform the tests, insurance companies will generally not pay.

I hope you find this helpful. Your daughter, you and your family and friends will be in my prayers as you go through this difficult period of time. All of here at Brain Talk are here to help you any way that we can.

Dave

[Cry Tears]

Dave...I read some of your blogs and what you've written about trusting God.
I was raised in a very disfunctional "Christian" "family".
My mom raised me to fear God...yeah...huge fear!...that god was ever ready to pounce and punish as any wrong doing.
I'm having serious doubts that God is loving, caring...especially with all I've had go wrong in my life. Has been one trial after another...people look at us wonder if we have some cures placed on us....so many bad things keep happening to us.
When I first became ill...she claimed I'd done some bad sin, is reason God punishing me with these diseases...guess she's right. I know some of the things that has happened to me/us is because of bad choices we made.
Other people have made same bad choices, but they didn't get punished!
So why do we get punished?!
How does one get to the point where they veiw God as a loving and caring being even when we're having a very hard trial in their lives?
What do you say to those who're standing on the side lines watching us fall apart...they ask "Why doesnt your God heal you?".....sometimes I ask the same of God as well...why?
I keep trying, praying and reading...but I just can't seem to find the understanding or right way to accept this.
How does one do this or get to this point of acceptance and be OK with it.
Thanks, Cheryl

[dland8]

Sorry I had to meet you this way but I am 51 year old male with MELAS. I would like for you to do two things.

1. Visit my "MELAS Information (http://blogs.datm.org/?page_id=22)" page (http://blogs.datm.org/?page_id=22). Read about the Mito Cocktail (http://blogs.datm.org/?page_id=23) (http://blogs.datm.org/?page_id=23) and the Mito Links (http://blogs.datm.org/?page_id=24) (http://blogs.datm.org/?page_id=24). I have listed hypertext words you can simply click on or the actual URL in case you need to cut-n-paste the web address in to your web browser.

2. On the Mito Links page mentioned above in action 1, contact any organizational references and ask LOTS of questions. Alternately, ask specific questions here for everyone here to help you with getting the correct answers. Finally, if you would like, feel free to contact me privately via this board's messaging functions but please let me know your first name and general location. Perhaps you are close to an exisiting clinic or support group that could also be of assistance to you.

All that said and speaking from experience, if the main symptoms did not appear until January 1st of 2007, seeing the "right" medical professionals that can accurately make a correct diagnosis the first time in that time frame; you would have to of seen very specific doctors at specific clinics and/or hospitals in very specific cities such as Atlanta, Cleaveland and New York if on the east coast of the U.S. Time turnarounds from these specific specialists takes a long time. For my first appointment just to begin seeing one of these types of specialist required a 3 month wait. Followup tests (out patient hospital) took another 3 months and getting the muscle biopsy test results all completed was another 3 months. Have you already been to these "mito specialists" as we know them by?

In closing, my entire online ministry at http://datm.org has changed its mission to that of interacting with other "mito families" and "blogging" about my mito journey. Please feel free to look around there two. One final closing note, a serious but true fact, is that MELAS is a maternally inherited defective gene. Only the mother can pass it on. My daughter, even though I have MELAS, in all likelyhood would not have MELAS. Testing is the only way to know and without a medical need to perform the tests, insurance companies will generally not pay.

I hope you find this helpful. Your daughter, you and your family and friends will be in my prayers as you go through this difficult period of time. All of here at Brain Talk are here to help you any way that we can.

Dave
Hi Dave

I live in Australia and my daughter has seen a neurologist and a metaboligist. She has gone from normally functioning to seriously intellectually impaired in 1 year. I am having difficulty coming to terms with the diagnosis because all test were negative, no ragged red fibres with the exception of evidence of defect on respiratory chain enzyme at complex 111. My question is if the diagnosis is only highly suspect and not confirmed why is my daughter deteriorating so rapidly. She has had severe seizures that have probably impacted significantly on her brain function. My gut feeling is that the diagnosis is wrong but I have spoken to two different neuros in two different Children's hospitals. The other reason I am having trouble with the diagnosis is that she was perfectly healthy prior to the onset. I can't even find anyone else with an adolescent with the diagnosis. Thanks for your reply. I hope you are able to maintain a reasonable quality of life for sometime. My neuro suggested you can have periods of remission if you are lucky or blessed. Thank you for all of the info. I have visited the websites you suggested. Kind regards Denise (Far North Queensland - Australia)

[Wheelin Rev]

I feel for your position in having an affected child at such a young age with such rapidly changing conditions. As you probably know, a lot of diseases and disorders have similar symptoms so there is always that possibility of a wrong Dx which might allow for a treatment to begin. Also, that can be wishful thinking as part of the denial process.

If your daughter does have MELAS, are you aware that it is only maternally inherited? Does any other family members from a maternal side have symptoms or have been tested? That may also shed some light on the situation.

My best to you and your family. I will be praying for you all as we both wrap up yet another year of having a disorder with no known cure. Keep the faith and perhaps 2008 will be the breakthrough year!

God bless you all and you all are in my prayers. Dave

[Wheelin Rev]

Cheryl,

I debated on whether or not to respond publically or privately. I mainly do not want to see dland8's thread "fall apart" because of our discussion over theological beliefs. I see where you are a geologist. I was an engineer and of course, being of a technical upbringing, you first have to decide whether or not the Bible is fact or fiction. Being a geologist and with most Biblical events happening within thr last 6,000 years; that can cause some doubt in itself. What I would suggest is this. Forget everything that you know. After all, God does not work in the natural. He works in the supernatural. Take the Bible as if it were the only book in existence. Sit down on your porch overlooking that beautiful scenery in Oregon and start reading the New Testament; shorter and easier to understand without all of the Old Testament laws and customs. Just you and God, on your porch.

For me, once I stopped trying to disprove God and asked God to reveal Himself and His ways to me in a new way, the blinders on my eyes fell off and everything that I read in the Bible from that day forward had new meaning, relevance and became very real to me.

I wish you and I could sit down and discuss this further. That is one thing about the Internet and my disorder, I cannot always explain myself clearly and if you mis-read something I say; I'll never know.

What I do know is that this life is but a mere fraction of a microsecond when compared to eternity. That I do Know and I know it because Jesus lives.

Dave