Does Idebenone have something to do with behaviours and cognitive issues?

My son had been on idebenone for 4 years before he stopped it 1 month ago along with increasing Deflazacort dose.

Since this time he has been experiencing strange behaviours like arguing with his little sister and he has been heperactive,being nervous,but he is in good euphoric mood!

Is this related to stopping Idebenone or increased Deflazacort dose?

How can he outgrow this?

My son is 9 years old.

Thank you very much

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Permalink Reply by David on July 10, 2014 at 5:05pm

Idebenone has no side-effects like this, I'm pretty sure. But all steroids like Deflazacort do. I'm no doc but I'm pretty sure this is the Deflazacort impact.

Permalink Reply by Moein on July 11, 2014 at 8:37am

Is there any way to manage these behavioural issues?

Thank you

Permalink Reply by David on July 11, 2014 at 10:47am
Wish I knew. We start Deflazacort this month.
Permalink Reply by Rahul Deshpande on July 24, 2014 at 1:07am

I read that Idebenone is still in clinical trials. Is it available? Have you seen any improvement in your child by using Idebenone. What dosage are you giving?

Permalink Reply by Moein on July 24, 2014 at 12:01pm

 Some improvement has been detected but not that much! I am not sure if it really help lungs and heart since my son is okay until now.

He was on 900 mg/day

Permalink Reply by Leeandra Arhdeacon on July 27, 2014 at 9:25pm

We were told by our neurologist that Idebenone can cause hyperactivity.

Permalink Reply by Keith & Jill VE on July 27, 2014 at 9:55pm

As information - we just returned from our first visit to Cincinnati Children's and they were leaning towards changing our 10-year-old son back to CoQ10 from idebenone, since the value of idebenone is still unclear.  He's been taking 600mg/day for about 2 years.  When we run out of idebenone, Dr. Wong suggested switching to Qunol from Costco.

Permalink Reply by Rahul Deshpande on July 28, 2014 at 12:54am

Hi Keith & Jilli,

I am located in India and do not have access to advance medical advise for DMD. My son is 9 years old and is recently detected with DMD. I am confused whether I should give him Idebenone or not. The doctor in India did not advise CoQ10. Can you let me know what is the complete list of medicines you have been advised by Cincinnati Children's. I can then consult my doctor here and start the same medicines.

My email is rahulpdeshpande26@gmail.com if you wish to send mail. Pl do reply.

 

Permalink Reply by Keith & Jill VE on July 29, 2014 at 8:39am

Hi Rahul,

Our son is currently on deflazacort, idebenone and several supplements (calcium, vitamin D, omega, multivitamin).  However, we're waiting for the results of his recent blood tests to re-evaluate all of them.  I would be happy to share the specifics once we finalize the details.

Permalink Reply by Rahul Deshpande on July 30, 2014 at 2:08am

Thanks Keith & Jill. Pl let me know the specific medicines with the dosage after the blood test. My email id is rahulpdeshpande26@gmail.com

 

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