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ginny

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Reply with quote  #61 

I cannot recall the name but is it the Wi system?  Where the kids move along with the TV screen?  My grandkids loved interacting with this system, not sure it is still around.

Can you get him to do 5 then 15 minutes of walking or bike riding?  Would he do some light yoga to get moving around?

I think it is really difficult until you see how he is during his well times, how his bowels function then, to know what he really needs for meds.

I don't know what the high levels of CoQ10 mean. Coq10 is best absorbed by the body if taken with a meal containing a little fat (peanut butter, if he can eat it, should be fine).  

Kaneka is the only CoQ10 that is manufactured in the US and is crystal free.  The body cannot absorb crystals.  My understanding is that all other coQ10 is manufactured in China.

Keneka CoQ10 is in many brand names.  Just try to be careful that he is getting quality coQ10.

I am very interested to hear what the doctor thinks about high serum levels of CoQ10.



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wynnak

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Reply with quote  #62 
My son's neuro took him off the CoQ10 since he was in the normal range. 

We have encouraged my son to use light weights while he is watching videos or gaming things.. ankle weights.. hand weights.. because too much just makes it worse.. He runs warm and the energy level is so awful.. So lawn mowing and vacuuming is about all the exercise he gets. But yes frustrating.. but then I am not one to talk.. 😉 

MY son made a very valid point to me one time when we were discussing him going to prom.. For me I feel like he is missing out on all of the things that made growing up fun.. But he says that if he doesn't know about it, he doesn't miss it. It is my history and my memories that I am comparing them too. But, he has led a very interesting life too. It is what has made him into the wonderful person he is today and to the persona that he will become. I don't regret that. I won't regret that. He isn't missing prom, or football games ( that was hard because he played football on a championship team and had to stop) home coming.. and it doesn't matter to him. What matters is that he is living and living for what is important to him. And I can support that. His growing up years don't need to be the idea of what I think he should do or what I did. Like I said.. it makes him, him. No regrets for us. We don't even blame CVS. It is part of him and again helped to sculpt him into the person he is today. I love that about him. 

Ginny talks frequently about how the bowels do exactly that. Then you take the anti-nausea and they can be constipating.. vicious cycle..

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Blynda
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Chelle

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Reply with quote  #63 
Thanks for the encouragement.  We had a lot of fun last night at a local fun place with our Youth Group and both my kids had fun and got some exercise and out of the house.  I know he misses the friends he had when he went to school.  I talked to him about using some weights like you suggested, he also does go downstairs and tosses a ball around once in a while. 

We are using Trader Joe's CoQ10 - they sell 3 different CoQ10 and only one of them has Kaneka, but the local store doesn't' always have that one in stock.  

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Chelle
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Reply with quote  #64 
Well, he decided to stop trying to go to Fencing class.. I am bummed out. He has been sick the last 6 or so weeks and hasn't gone. Another thing he has to stop because of this illness.  [frown].     

The New Neuro said that he thinks the current mg that he is on is good for his weight, but he encouraged me to check with the specialist in WI the end of the month.  Since the lab results say High, but if my understanding of the mcg/l to the mg/l in Dr. Boles guidelines is * or * mg/l he is lower than that if I did the conversion right for CoQ 10.

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Chelle
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wynnak

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Reply with quote  #65 
If either of your doctors are interested in helping you guys out, but just don't know what to do from there.. they can contact CVSA to have a consult with our advisors as well. This was literally what helped our doctor initially. He knew nothing about CVS but was willing to help us. So he consulted the advisors. I would make sure that they have that information as well. Could be helpful, instead of having you figure it out. But, the conference is almost here! I hope you guy will have a turn around and feel he can come. My son may be a good person for your son to talk to. I plan on looking for you there so I hope we can introduce the boys. 
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ginny

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Reply with quote  #66 
Maybe this helps:

Ages 8+ including adults: 300 mg twice daily (600 mg a day)

Get a CoQ10 plasma (blood) level at least one week later as blood levels are frequently too low even on these relatively-high doses. This test is widely available.

The blood level should be higher than 3 mg/L, better if higher than 4 mg/L; otherwise increase the dosage and test again. Note than the normal range in most laboratories is about 0.5-i .4 mg/L, so the levels considered to be optimal are much higher than "normal". If very high dosing fails to. reach optimal blood levels, which is due to poor intestinal absorption, change the brand ani or give more frequently (3 or 4 times a day).

Side effects are very uncommon. If the added energy interferes with sleep at night, take the last dose of the day with dinner in­ stead of at bedtime.

 


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ginny CVSA Moderator
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wynnak

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Reply with quote  #67 
Chelle, did you talk with the doctors about this at Date with a Doctor at the conference? 
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Chelle

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Reply with quote  #68 
DR Li said his level is fine and he can increase to a higher dosage yet and can go up to the recommended 300mg 2x's a day equal 600mg.  And that I was reading it right the results.  

We go in and talk to our Neuro on Tuesday to talk about all the suggestion I came home with from the conference.  

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Chelle
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wynnak

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Reply with quote  #69 
Look forward to hearing an update once you meet with them!
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