Cyclic Vomiting Syndrome Message Board
Sign up Calendar Latest Topics
 
 
 


Reply
  Author   Comment  
Mmwinget

Registered:
Posts: 28
Reply with quote  #1 
Hi! I have seen someone mention a good co enzyme q10 at Trader Joe's in the past I believe... am I remembering this correctly? We need a liquid version for my 5 year old. Thanks in advance!
0
ginny

Avatar / Picture

Moderator
Registered:
Posts: 4,750
Reply with quote  #2 
Dr. Boles approves of Trader Joes CoQ10.  With a young child I think I would start with Epic4Health or Healthy Origins to be sure the dosing is even.  Both carry pharmaceutical quality CoQ10 and Epic4Health carries the brand most often used in research.  In the past both have had someone you can talk to about the various forms of the products as well as anything added in such as Vitamin E.  Healthy Origins suspends in Olive Oil and Epic4Health carries product with no Vitamin E.

Always be sure to talk to your child's MD before adding supplements.  Also be sure that whatever brand you decide to use is the natural form of CoQ10.  You can call the 800 number on the bottle for additional information on the brand.

__________________
ginny CVSA Moderator
0
Mmwinget

Registered:
Posts: 28
Reply with quote  #3 
Thanks Ginny! She's been taking them for a while per doctors orders but I'm wanting a better brand, thanks for the information [smile]
0
ginny

Avatar / Picture

Moderator
Registered:
Posts: 4,750
Reply with quote  #4 
If you call Epic4Health or Healthy Origins and tell them your child has CVS, they will both give a discount on the products.  This does help because the supplements can be costly.  LCarnitine can be prescription Carnitor so if you have a prescription plan with a low co-pay, then you might ask her doctor to prescribe.  Dosages can be found in the Supplement Study posted on the CVSA web site.



__________________
ginny CVSA Moderator
0
wynnak

Avatar / Picture

Moderators
Registered:
Posts: 1,092
Reply with quote  #5 
Dr Boles did like the Trader Joes brand due to the less amount of "filler" they put in them. It was years ago when I was told this. You could research the brands. CVSA has an agreement with Epic4Health and HealthyOrigins to help get a discount on high quality supplements for CVSA patients. This is why we recommend them as well. We would not recommend them otherwise. There was a website that compared drug store brands that was extremely eye opening.. when I had seen it.. (my endocrinologist was showing me) I don't remember the website.. but now I only take the brand that, that Doctor had suggested .. there is a reason they suggested it.

As Ginny mentioned, Epic4Health or HealthyOrigins has info on CVS and the Doses because we have that agreement with them. SO it is a great option for getting very good quality supplements. I have a friend that sees Dr Boles and he told her about both of these places as well.. Trader Joes was the probably the berst option at the time I was told.. Plus L-carnitine is getting harder to find in some locations. It is being discontinued because it is not a high profile supplement. Having Epic4Health and Healthy Origins is a great option for people losing access. 

Ginny have you heard about this.. there is a Drug Store chain that is no longer carrying.. they won't even order it because it is not a money maker for them.

__________________
Blynda
Message Board Moderator
Monthly Support Call Moderator
0
ginny

Avatar / Picture

Moderator
Registered:
Posts: 4,750
Reply with quote  #6 

I have not heard of this.  I do recall when we ran the small online study that every person had a positive outcome of some sort. Some stopped cycling completely.  Others had less cycles.  I think we ran the study for several months, maybe a year.  After a couple of months it was apparent that the supplements were worth trying. 

At that time Dr. Boles was not suggesting CoQ10 in his practice.  As data was submitted back to him he began to suggest the CoQ10.  

My daughter was probably the reason that we learned about synthetic and natural quality--not knowing what to use, we used a brand that actually made her sick.  I found out that I had purchased synthetic CoQ10.

We also learned that the top sourcing for the actual product was from a Japan.  I think all pharmaceutical quality CoQ10 uses this source although manufacturing can occur in any country.  

For LCarnitine, I did not know it is difficult to locate.  DCarintine = dangerous (we had a couple of people purchase that product), Acetyl Carnitine worked well for a some, and L Carnitine seems to be the product of choice for most medical professionals.  One child did best with acetyl.  There is also a "pre" CQ10 product.

We learned that the top sourcing for the Carnitine was either Italy or Switzerland.  Being able to get Carnitor by prescription helps if the patient has pharm. coverage.  The other advantage is that the product is pharm quality.

Healthy Origins and Epic4Health discount for several medical conditions. They provide discounts for medical conditions.  We called both and explained CVS to both companies.

There has been a lot of progress with the supplements over the years.  Dr. Boles told me--some years ago-- that he finds the biggest patient improvement is adding in vitamin B, and sometimes  additional Riboflavin.  He has found that his patients cannot tolerate B until after CoQ10 is established.

MB User Bibliana first suggested these supplements.  It seemed like snake oil at the time.  One very active MB user felt a cycle coming on and together we started her on the supplements.  She did not cycle.   We then took on collecting data and running an anecdotal study off the MB.  It was an amazing experience with positive feedback.  Dr. Boles told us what he needed to know. We recorded data using Excel.

That is the history of these supplements. Lots of information can be found on Mito Action.



__________________
ginny CVSA Moderator
0
Chelle

Registered:
Posts: 145
Reply with quote  #7 
I was bummed when I found out that one of the COQ 10 formula supplements I was getting from Trader Joe's has been discounted by the mfg. It was the 200 mg one so now my son has to take 3 pills now at 100 Mg.  At least they still have the other two formulas.
__________________
Chelle
"just wish there is a fix for our kids"
0
wynnak

Avatar / Picture

Moderators
Registered:
Posts: 1,092
Reply with quote  #8 
I will mention that Dr. Boles has also said that the Qunol Brand is good as well. That can be purchased at Costco. 
__________________
Blynda
Message Board Moderator
Monthly Support Call Moderator
0
Chelle

Registered:
Posts: 145
Reply with quote  #9 
Thanks.  I think I looked at them before and the size of the pills are larger but always something to keep in mind.  We really like the Trader Joe's ones so for now we will stick with them.  
__________________
Chelle
"just wish there is a fix for our kids"
0
wynnak

Avatar / Picture

Moderators
Registered:
Posts: 1,092
Reply with quote  #10 
We do the same thing. No way we are going to upset the balance! 
__________________
Blynda
Message Board Moderator
Monthly Support Call Moderator
0
Previous Topic | Next Topic
Print
Reply

Quick Navigation:

Easily create a Forum Website with Website Toolbox.