Re: Diagnosis-Answers?-Better 2004

December 31, 2003

Darlene

I remember Cohen said something at the conference that might be helpful here...I hope I say it right and know someone will correct me if I am wrong.

He said if you think of Mitochondrial Medicine as a swimming pool...and you get a small bucket and take that much water out. The bucket, he said, is what they know about Mitochondrial Disease...and he said half of that is wrong.

The thing I think you need to remember is that we ARE dealing with the unknown here! Dr Korson said the methods they have are just archiac to how precise it needs to be. So Its not just you guys...it that way for everyone.

I know its frustrating...we need research money and the amount that UMDF is able to contribute is not enough at this point to help us that much. The best thing is to raise awareness I guess.

deb...mom to three great adopted kids... (07.04.96-05.26.03) with Mitochondrial Disease, Gaige age 4 with Aspergers Syndrome and Bliss age 2 with very very mild Cerebral Palsy.www.HeartLiftersGallery.comhttp://health.groups.yahoo.com/group/NurturingHeavensKids/

December 31, 2003

Darlene

I remember Cohen said something at the conference that might be helpful here...I hope I say it right and know someone will correct me if I am wrong.

He said if you think of Mitochondrial Medicine as a swimming pool...and you get a small bucket and take that much water out. The bucket, he said, is what they know about Mitochondrial Disease...and he said half of that is wrong.

The thing I think you need to remember is that we ARE dealing with the unknown here! Dr Korson said the methods they have are just archiac to how precise it needs to be. So Its not just you guys...it that way for everyone.

I know its frustrating...we need research money and the amount that UMDF is able to contribute is not enough at this point to help us that much. The best thing is to raise awareness I guess.

deb...mom to three great adopted kids... (07.04.96-05.26.03) with Mitochondrial Disease, Gaige age 4 with Aspergers Syndrome and Bliss age 2 with very very mild Cerebral Palsy.www.HeartLiftersGallery.comhttp://health.groups.yahoo.com/group/NurturingHeavensKids/

December 31, 2003

I realize the little knowledge of mito; however, I do not feel taking the approach of "no answers" to helping mito. Our insurance would pay for the visit.

I remember when the docs here told me we would not find an answer here in Memphis...I remember saying to our neuro, who saw all three of my kids and we had a good relationship..."Well, that is just NOT good enough for us!" and then we saw Shoffner and got the diagnosis. I can't imagine now, given 's malignant and aggressive course, not knowing why he died, yet I do know that happens in the US b/c of lack of mito knowlege. Anyway, why can' you still go to Mayo? Where do you live again? NC?

deb

December 31, 2003

I realize the little knowledge of mito; however, I do not feel taking the approach of "no answers" to helping mito. Our insurance would pay for the visit.

I remember when the docs here told me we would not find an answer here in Memphis...I remember saying to our neuro, who saw all three of my kids and we had a good relationship..."Well, that is just NOT good enough for us!" and then we saw Shoffner and got the diagnosis. I can't imagine now, given 's malignant and aggressive course, not knowing why he died, yet I do know that happens in the US b/c of lack of mito knowlege. Anyway, why can' you still go to Mayo? Where do you live again? NC?

deb

December 31, 2003

I understand your frustration very well. My daughter Grace is also one of her own. I have been told by Cohen that we will probably never fully understand her problems exactly. He also told us that we cannot predict her outcome. He does not think her case is fatal, with treatment, but as far as liver transplants, diminishing muscle ability ect. we will only know when it happens. I wish I could know what to expect, but I am confident she is in good hands. I understand what this disease can do, so if it starts I am prepared. I guess I look at it as nobody really knows there future. Have you ever thought about seeing Dr. Cohen instead. He really tries to go indepth in finding answers. He is also very honest when he just does not know. I know they also do the fresh muscle biopsies in Cleveland, this is where Grace goes. Good luck.

December 31, 2003

I understand your frustration very well. My daughter Grace is also one of her own. I have been told by Cohen that we will probably never fully understand her problems exactly. He also told us that we cannot predict her outcome. He does not think her case is fatal, with treatment, but as far as liver transplants, diminishing muscle ability ect. we will only know when it happens. I wish I could know what to expect, but I am confident she is in good hands. I understand what this disease can do, so if it starts I am prepared. I guess I look at it as nobody really knows there future. Have you ever thought about seeing Dr. Cohen instead. He really tries to go indepth in finding answers. He is also very honest when he just does not know. I know they also do the fresh muscle biopsies in Cleveland, this is where Grace goes. Good luck.

December 31, 2003

DArlene

not to sound negative or anything but i think JD is one of the older ones on the list...in fact I can only think of 5 or less who are his age or older...so it is rare. I am not sure why your pedi would have even asked Shoffner...seems like he would have done better to call Whiteman and see if he thinks he can help you guys. Shoffner just diagnosis so if he was thinking you were looking for better diagnosis then no, mayo probably wont be able to do much for you.

When I talk about how we would fly to Boston to see Korson, I don't use the word 'for treatment'...instead, I say "for management" b/c there aren't really treatments outside of CoQ and the others and not ever child even benefits from that...I think it depends on what you are looking for. Most of the mito docs need a doc in your town they can give suggestions to that will follow through with them...someone that can be the point person, otherwise you are just wasting a lot of time and money. It seems like your doc may be willing to do that for you. IN our case, everyone had pretty much given up on here...they had never seen mito before and didn't care to learn anything. So we would go to Boston and leave with some good ideas and hope and get home to find that no one wanted to do what Korson suggested and even when he wrote letters or called them, there was still resistence...ego's...getting in the way. The best thing we got out of the deal was Korson was very accessible most of the time by email or phone...that is not what I know of the other mito docs, so you should consider this also.

its so frustrating...I feel for you guys still in the trenches...altho I would happily be back in them than where I am now. Even with Gaige with his aspergers there are ignorant clinicians who dont' want to learn new things and end up screwing my kid out of services and getting the best he could get.

deb...mom to three great adopted kids... (07.04.96-05.26.03) with Mitochondrial Disease, Gaige age 4 with Aspergers Syndrome and Bliss age 2 with very very mild Cerebral Palsy.www.HeartLiftersGallery.comhttp://health.groups.yahoo.com/group/NurturingHeavensKids/

December 31, 2003

DArlene

not to sound negative or anything but i think JD is one of the older ones on the list...in fact I can only think of 5 or less who are his age or older...so it is rare. I am not sure why your pedi would have even asked Shoffner...seems like he would have done better to call Whiteman and see if he thinks he can help you guys. Shoffner just diagnosis so if he was thinking you were looking for better diagnosis then no, mayo probably wont be able to do much for you.

When I talk about how we would fly to Boston to see Korson, I don't use the word 'for treatment'...instead, I say "for management" b/c there aren't really treatments outside of CoQ and the others and not ever child even benefits from that...I think it depends on what you are looking for. Most of the mito docs need a doc in your town they can give suggestions to that will follow through with them...someone that can be the point person, otherwise you are just wasting a lot of time and money. It seems like your doc may be willing to do that for you. IN our case, everyone had pretty much given up on here...they had never seen mito before and didn't care to learn anything. So we would go to Boston and leave with some good ideas and hope and get home to find that no one wanted to do what Korson suggested and even when he wrote letters or called them, there was still resistence...ego's...getting in the way. The best thing we got out of the deal was Korson was very accessible most of the time by email or phone...that is not what I know of the other mito docs, so you should consider this also.

its so frustrating...I feel for you guys still in the trenches...altho I would happily be back in them than where I am now. Even with Gaige with his aspergers there are ignorant clinicians who dont' want to learn new things and end up screwing my kid out of services and getting the best he could get.

deb...mom to three great adopted kids... (07.04.96-05.26.03) with Mitochondrial Disease, Gaige age 4 with Aspergers Syndrome and Bliss age 2 with very very mild Cerebral Palsy.www.HeartLiftersGallery.comhttp://health.groups.yahoo.com/group/NurturingHeavensKids/

December 31, 2003

Thanks for replying. I realize the little knowledge of mito; however, I do not feel taking the approach of "no answers" to helping mito. Our insurance would pay for the visit. Research money helps, also side stepping egos, managing and pooling together.

Darlene

December 31, 2003

Thanks for replying. I realize the little knowledge of mito; however, I do not feel taking the approach of "no answers" to helping mito. Our insurance would pay for the visit. Research money helps, also side stepping egos, managing and pooling together.

Darlene

December 31, 2003

The dr here is willing to do anything to get J.D. help but when she talked with Dr.Shoffner, he told that we would not find answers at Mayo. The dr here thought maybe since it was a different organization might have something to do with his answer. If the mito parents in early stages accepted that there are no answers, we would not have the diagnosis. Although having the diagnosis has not really helped with getting our kids well. Since it has been 2 years that Dr. Shoffner has seen J.D., I do not believe he realizes the progression since then. The dr told us at our last dr's visit 2 weeks ago that J.D. has out lived most mito patients with his diagnosis.

Darlene

December 31, 2003

Thanks ,

I believe that is the key, finding a good managing dr. Most of them seem to be so far away from us. The one thing good about the dr here, she will do what I request. I find therapist have to go by dr's orders whether they agree with them or not.

Darlene

December 31, 2003

Thanks ,

I believe that is the key, finding a good managing dr. Most of them seem to be so far away from us. The one thing good about the dr here, she will do what I request. I find therapist have to go by dr's orders whether they agree with them or not.

Darlene

December 31, 2003

Thanks soooooooo much Kass.

Darlene

December 31, 2003

Hi Darlene:

I guess I personnally don't agree with what you are hearing. It

seems people are very happy with mayo and the answers they do get to their

questions. I look at meeting with a doctor not to find a cure; but

to help me with questions and issues regarding Leah. I know we had

her last visit with her metabolic doctor in Madison and he said we'll see

you in two years. But if we felt we needed to see him in a year we

could. But as Deb had said it is management. And that's what

you need. To know you are doing what you can for JD and for yourself.

And some other answers may come up with that you may not have seeked.

I would keep the appointment. It doesn't hurt. Even to know

that you are doing every thing right is positive enough things. It

may not be what you want to hear; but it just keeps you on an even keel.

It's better to stay on top of things even to find out why some thing is

progressing. I feel better having a doctor see any of my children

face to face rather than via email with questions. I know we see

a wonderful ped. neuro in Milwaukee who wants to figure out what is going

on with my kids and offers good advice on if we should persue another test

or not and he spends the time with him that is needed. He will set

aside two hours if you need it. And it's nice to know when a doctor

agrees with us about a test and why we shouldn't do it or the positive

of our kids. Good luck and let us know what you decide to do.

I hope you keep the appointment even if it is just for management purposes.

Nerenhausen

mom to Leah

Darlene Graham wrote:

The dr here is willing to do anything to get J.D. help but when she talked

with Dr.Shoffner, he told that we would not find answers at Mayo.

The dr here thought maybe since it was a different organization might have

something to do with his answer. If the mito parents in early stages

accepted that there are no answers, we would not have the diagnosis.

Although having the diagnosis has not really helped with getting our kids

well. Since it has been 2 years that Dr. Shoffner has seen J.D.,

I do not believe he realizes the progression since then. The dr told

us at our last dr's visit 2 weeks ago that J.D. has out lived most mito

patients with his diagnosis. Darlene

Please contact mito-owner with any problems or questions.

December 31, 2003