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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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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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wynnak

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

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Reply with quote  #70 
Quick update.. I know it has been a few months since I have stopped in. 
My son is up to 16 pills a day we are up to the highest dosage of gabapentin that our Neuro Dr is wiling to go, if he is still having episodes at this dosage he will back it down and we will try another medication. 
Fall into Winter is always a trigger.  Then Winter into Spring.  His episodes have been vomiting during the night and nauseous during the days, 1 to 2 days or it skips a day and he is sick again.  Better then he has been in the past.  At least our new Dr. is working with us which is good.

Schooling seems to be going better for him so far this year and we are looking at him attending the local Career Tech Center next year as a home schooled student. Still have to figure out all of that.

We did up his CoQ 10 per what Dr. Li suggested at the Conference and we are using a combination of  Trader Joe's Brand. 

He will be turning 16 in just a few weeks, I keep praying he out grows this soon or we figure out the right medicine combination for him.  He is involved with some good friends doing a D and D campaign and working on running a D and D campaign for the kids in our youth group.  This is all good because it gives him something to do that is interactive with other kids that he enjoys. He has been cooking more again and helping me with my new diet.  I have never had to really worry about what I ate before and now I have to if I want my gut to stop hurting.  Maybe some of the changes we are making in our food choices will help him and the rest of the family as well.

Take Care everyone.

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wynnak

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Reply with quote  #71 
I’m glad he’s finding ways to interact.

You will find a way to work with the school. You have time. It’s good that your starting now.

Have you had his CoQ10 levels checked to see if he has reached therapeutic levels? You may try that.

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Chelle

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Reply with quote  #72 
No we haven’t had coq rechecked.
We went to Neuro this week for a follow up he would like to get his vitamin D and iron levels checked since he seems very tired. He’s at a very high dosage of gabapentin the doctor is hoping that that dosage will stop his episodes. He has had a one day episode since he’s been on this highest dosage.
He’s had two times in the last few weeks that he blacked out while in the bathroom this is new for him. One time it was around noon when he didn’t feel good and felt like he was going to throw up last night he woke up from sleeping to go to the bathroom and it happened again around 2 AM.
Afterwards he felt light headed and neausea.

He is taking about 16 pills a day now. 😧

Today he goes to the career center here in our county to learn more the culinary program. We want to get his drivers training started after the 1st of the year also.

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Chelle
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wynnak

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Reply with quote  #73 
I would push for the CoQ levels as well. If they are already taking blood, why not? His Vitamin D will most likely come back low. Most people's do. Just depends on the level of low. 

You were at the conference for Julie Banda's presentation on POTS. Has he been evaluated for that? May not just be migraines making him dizzy.  

My son has issues with Lethargy and energy levels. mild exercise (walking) and a strict sleep schedule help with that.

Let us know how it goes.

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wynnak

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Reply with quote  #74 
Chelle,

Has your son had a recent Neurological evaluation? Literally the exam where they have him do numbers backwards and test reflexes etc? 
I am asking because with the amount of meds he's on you may consider that the meds are what is causing the additional problems. My son was WAAAAYYYYY over medicated at one point. Doctors just kept throwing more meds at it and it was making it worse, not better. 
Dr. Boles described it at the conference with the three blind Doctors examining the elephant slide.. do you remember it? Maybe it's time to have a Nuerogeonomics doctor pulled in. If Dr. Kovacic or Dr Li were to see him, the first thing they would do is to take him off all the meds and start over. You say 16 pills a day.. and high doses of Gabapentin... Can his treating Doctor reach out to CVSA to have a consult with one of the advisors? Or can you get him seen at the Milwaukee clinic? 


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Chelle

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Reply with quote  #75 
Our new Neruo has him do some simple test every time we go in, like following the pen, touch nose then touches his finger, etc.   Now the Dr. wants him to have an overnight EEG  he had a short EEG in the office this summer and the results were normal, so I am not sure what the Dr. is looking for and he said that if he keeps having episodes during Dec and into Jan. he will take him off gabapentin and try another medication.  I will mention POTS to his Dr. this week.   I have given the Dr. notes from this years convention and told him he could reach out to any of them.

His Vitamin D was low so we are adding another daily pill for Vitamin D.

Do you know if others found EEG to be abnormal?  I know each person is different.  I did a search on here for EEG but didn't see anything real recent.  I know our Neuro Dr. deals a lot with epilepsy.   
I haven't ruled out going to Wisconsin, but I want to give this new Dr. a chance, he is working with us and believes in CVS.

I will keep you posted thanks for your support.



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Chelle
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