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Cleaveland Clinic and other questions

Posted: October 3rd 2009

owen10

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I was just wondering if anybody saw Dr.Parikh or Dr. Cohen? If so what was your experience like and what exactly happens at your first appointment. I also wondered if anybody's muscle biopsy showed elevated citrate synthase levels with mitochondrial proliferation. The sample that was sent out stated this, just trying to learn as much for my son as possible. Is anybody from Michigan?

Thanks, Carrie

IF you choose to go to CC. I

Submitted by arktjk on Sat, 10/03/2009 - 11:42am.

IF you choose to go to CC. I would suggest you only see Dr. Cohen, but I understand his wait time is very long. The hospital is playing politics and only allows him to see mito patients on a very limited basis. That is who we originally saw in 2005-2006. As for the 2nd half of your question, I am sorry I cannot help you with that part. We did not have muscle biopsies and I am not at all familiar with them. We live in a Chicago suburb. I know I sound very harsh, but I do not wish to see other families go down the same path we did with Dr. Parikh and I will tell the truth. Beth

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Thanks Beth, I appreciate

Submitted by owen10 on Sat, 10/03/2009 - 11:48am.

Thanks Beth, I appreciate your honesty. We will definitely not see Dr. Parikh and wait to see Dr. Cohen or be guided elsewhere. We are willing to go anywhere we want the best plan of action and someone who will lead us in the right direction. If you or anyone has any other suggestions of doctors please feel free to let me know. I know we are going to have to wait to get in with whatever mito specialist we see but I feel helpless in the meantime. I feel like every day we are waiting he is a ticking time bomb and he will continue to lose muscle strength etc..Thanks for listening

Carrie

Carrie, I will send you a

Submitted by arktjk on Sat, 10/03/2009 - 12:29pm.

Carrie, I will send you a list a recommendations of some doctors through your email.
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Adairfamily5's picture

Dr. Mary Kay Koenig in

Submitted by Adairfamily5 on Thu, 10/15/2009 - 3:06pm.

Dr. Mary Kay Koenig in Houston, Texas is excellent.  Not sure if you can find someone closer though.  I can give you details about my visit if you want.  Just throwing that out there since we are all so limited.

 

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Liberty

Hi Everyone, I have to say

Submitted by Ellen Mollineaux on Fri, 10/16/2009 - 9:13pm.

Hi Everyone, I have to say that we met with Dr. Cohen twice and we have been seeing Dr. Parikh for three/four years and we absolutely LOVE him! We fly to Cleveland from NY each year and we have found Dr. Parikh to be extremely helpful, knowledgeable and very supportive. At first we didnt want to give up Dr. Cohen but the wait was too long. Seeing Dr. Parikh is not settling for 2nd best. I feel we are receiving excellet care. My son Eli has Pearson's syndrome. He was diagnosed 7 years ago. I would VERY strongly recommend either Dr. and I have many times. Take care everyone, Ellen

Hi All, We went to the

Submitted by dnrteuer on Sat, 02/27/2010 - 8:58pm.

Hi All, We went to the Clinic in December 2008. Originally we had arranged for going to Atlanta, but when the group there had problems, we ended up in Cleveland. By the time you get to biopsies, etc. emotions are raw and you are exhausted, at least I was. Perhaps that colors my memories of the trip out there, maybe not. We stayed at the Ronald McDonald House, and I cannot recommend highly enough. The staff were wonderful, and the fellowship/support from other kids and parents staying there is amazing. It is very home-like. You can cook there, but they often have catered community meals (for free) for when you are too exhausted to walk, let alone cook. There is a real sense of community and we actually met two other Mito kids and their families who were staying there. There is also plenty of room to be by yourself when you need it. AND, they have a shuttle directly to the Cleveland Clinic for your appointments. One of the families we met had been seeing Dr. Cohen for years, and loved him. The other family we met had been seeing Dr. Parekh for years, and loved him. Our appointment was with Dr. Cohen. We did not have a good experience. We didn't even meet him until the end of the week after all the testing and surgery was over, and then only for 30 minutes. The Cleveland Clinic permanently lost all of my son's x-rays and records. It was totally chaotic, and then it took forever to get results. I think the take home message is that both doctors are expert at what they do, and style-wise you may like one better than the other. I have the impression that if you are a person who needs a more personal touch, Dr. Parekh might be a better fit, but they are both excellent doctors and you will be glad for the help you get from either one of them Good Luck, Donnah.
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Donnah

I'm gaining a world of

Submitted by Carollind on Mon, 04/19/2010 - 6:58pm.

I'm gaining a world of knowledge, and thirsty for all info on Mito conditions. Daughter, son, me, 2 grandsons, all diagnosed this past Dec with MELAS. Many doctor trips, many many uninformed and narrow minded doctors in our area. Then I was able to go to a meeting with Dr. Parikh, who spent 3 hours answering questions, drawing diagrams on chalkboard, and giving caring, deeply researched info and answers to all who attended. I was very impressed with his wealth of knowledge, as were those in attendance that I visited with afterwards. One grandson had mysterious symptoms, doctors spent 6 weeks trying to diagnose, and Dr. Parikh knew instantly the diagnosis. So we admire the doctor and I would highly recommend going to his seminars if possible. Carollind from Minnesota
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Carol Lindeman

What is the first name of

Submitted by LLWinston44 on Sun, 04/25/2010 - 2:03pm.

What is the first name of the Dr Cohen? There are 4 with that name! LOL!! I'm looking for an ADULT doctor specializing in Mito...

His first name is Bruce

Submitted by teara doutre on Wed, 06/30/2010 - 7:36am.

His first name is Bruce Cohen, from the Cleveland Clinic.  We see him and he is very informative and helpful with mito disorders, however he is not a miracle worker and has no cures, but he can provide what you need to help your child and give you info on the condition.

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teara doutre

His first name is Bruce

Submitted by teara doutre on Wed, 06/30/2010 - 7:36am.

His first name is Bruce Cohen, from the Cleveland Clinic.  We see him and he is very informative and helpful with mito disorders, however he is not a miracle worker and has no cures, but he can provide what you need to help your child and give you info on the condition.

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teara doutre