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ginny

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Reply with quote  #16 
Magnesium is said to help migraine headaches.  Be careful of the type of Magnesium.  I know some prefer chelated as it is absorbed better but many doctors prefer another form of Magnesium.  Magnesium can have a laxative effect so be sure to speak to your little girls pedi or GI.  She is very young and it is important that her doctor know what you are trying.


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Chelle

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Reply with quote  #17 
Thanks, I wondered about Magnesium.   
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Chelle
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Reply with quote  #18 
I checked my son's Mutli Vit and he is taking a Men's Mutli and it has high amounts of Vit E.  over what I found to be what an Avg. Teenage boy should take.  We have started him taking the Mult Vit every other day.  I went with the Traders Joe CoQ10 QH Ubiquinol with Kaneka QH.
 Since they sell two different ones. 
1. CoQ10 QH Ubiquinol with Kaneka QH still shows some Vit E in the "other Ingredients"   60 Softgels 
2. Co Enzyme Q10 Ubiquinone list Vit E (Alpha tocopherols ) 5UI and Co Enzyme Q10. List soy as an "other Ingredients" 90 Softgels

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Chelle
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wynnak

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Reply with quote  #19 
We just upped our dosage of magnesium.

I'm seeing a lot of migravent usage.. going to have to run this by our nuero and see if that is an option.. maybe take less pills because it's all in one.

Chelle, are you mentioning the soy because some CVSrs have issues with soy?

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Blynda
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Chelle

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Reply with quote  #20 
I have never looked into his Soy.  
At one time when they did blood test for food allergies it came back very allergic to Dairy, but when we pulled dairy from his diet it did't make a difference and than we got into a Allergy Dr. and they did a full allergy testing and he didn't show any reaction to dairy at all or other food. Only mild for dog danger and that was it. 

We go back to the Allergy Dr. in a month or so, should I ask them about retesting him for food allergies, like Soy? He doesn't drink much regular milk unless it is chocolate, he drinks Almond Milk to help with his reflux. 

He does seem to be doing much better now that he is doing online schooling.

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Chelle
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wynnak

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Reply with quote  #21 
Soy was in my first round of testing.. But mine was crazy intense. So you may see if he was already tested for it. 

Glad he found help with the online. That is wonderful.


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Blynda
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ginny

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Reply with quote  #22 
I am not at all sure about an allergy to soy but I think it is more that it is not well tolerated by many who have CVS.
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Reply with quote  #23 
Thanks both of you for your input and support.  
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Chelle
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Reply with quote  #24 
So a year later and my son's Neuro finally said that I could add in the supplements from Dr. Boles that was in the Summer 2017 Code V newsletter. She said she wouldn't do blood work for his CO Q levels but she was fine if we upped his dosage but she, of course, said that Dr. Boles guidelines where too high. We have started increasing his dosage. 

Trader Joes now has a simpler Co-Q-10 conemzyme Q10 and other ingredients: Microcrystalline Cellulose, Hypromellose (capsule) Magnesium Stearate

She also said I could add in the Mega dose of Vitamins B.   

My son stopped taking the Men's Mulit Vitamin a while ago so we are looking to add in at least Complex Vit B with Riboflavin at the dosage Dr. Boles mentioned. So I am on the hunt for one that looks right that is affordable.  

We might also try adding back in L-Carnitine also.  
I know he needs to get his bowels moving better, but I can't seem to get him to dring water or move around much.  What happened to my little kiddo that was always on the move he turned into a teenager and sits at his computer all the time...doing a lot of online schooling.

Neuro still says that it is Anxiety trigged and she wants him to get it under control in a few weeks and go back to the public school with a 504 and he will be fine.  Like we haven't tried that for the last two years.. ugh 

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wynnak

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Reply with quote  #25 
Oh man.. the schooling. Can I insert and eye roll here. We have been all over that. Once my son was was fairly stable.. he went to college. DURING his senior year in high school. Grr.. schooling things make me crazy.

I would be leary of the b-vitamin complex..  Becasue it also contains b-12 which is energy.. Not that CVS patients couldn't use it.. but in prompted rebound headaches for my guy. We use strictly the b-2. We get them off of Vitacost.com. It was recommended by our neuro.

The magnesium could be the answer to getting things moving for you fella. There are several kinds.. as you probably know being that you mentioned the stearate. Mine alternates with the Chelated or if things are not moving the citrate.. BUT be careful. The citrate is a laxative. 


Dr Boles level for CoQ10 are high.. for a reason. CVS Patients and mito tend to need higher doses. Maybe ask your PCP to run the test if you want it done. 


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Blynda
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Reply with quote  #26 
We see his PCP on Monday so I will ask her as well about the blood work.   Maybe we should start with just adding B2.

Thanks for your input I know I haven't been on here lately, I get so bogged down with life.   Hope things are going okay with you. 
My boy is still having school issues.  The online school again this year even though we switched school and he is still having computer issues.

I don't understand a lot about all these supplements and how much to use what ones to use.  We need to get his bowels moving for sure.  Do you think we should add in more magnesium?  on its own or combined with other vitamins.  He is on probiotic, Butterbur, CoQ10 for supplements.  

I enjoy our conversations. 



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Chelle
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wynnak

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Reply with quote  #27 
Hopefully you have the 504 with the online school. Still have to argue with them.. but they worked so much better with us.

There are lots of supplements. They are quite confusing. My understanding is that magnesium and butterbur fall into the same category. I would consult the doctor for changing.. they may take off the butterbur and try the Magnesium instead. Especially if it could be helpful for the laxative side effects. 

My son has tried been on, tried  or is on all of those.. Dr. Boles guidelines for doses are very good. Have the bloodwork done and go from there. My son only needed a little so him taking a vitamin with the CoQ10 is adequate for him. But it took us years to get the test done.. and all we did was tell the pcp we wanted to have the levels checked.

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Blynda
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Reply with quote  #28 
our PCP said to try a B 100 so I ordered one yesterday, we talked about blood work but didn't order any.  She is leaving the umbrella of the largest local hospital and children's hospital in the area. She said she could refer us to a different neuro Dr. that doesn't work for the large umbrella also as an alternative to the Neuro team we are seeing now as part of the Children's hospital.  She also said he needs to move around every day at least 25 mins and get his heart rate up. And he did it yesterday on his own without me telling him to do something and get off the computer. Happy moment !!!    [smile]

He does have a 504 at the online school carried over from the local public school, the school is trying to work with us on computer issues and seem understanding.  He was able to get more school work done this week, even though we haven't changed anything.  

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Chelle
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wynnak

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Reply with quote  #29 
B2? Instead of overall b vitamins?

My son’s virtual school worked better with us. It was about communication. If we had issues, we actually had a case manager type person force is 504 that would intervene. We even had a computer from the school. Preloaded programs that they would use, etc. it also had a program that read him the books, or stuff he needed to study. Since reading sets off migraines and his migraines set off the CVS.

We had days that he worked all day, and days he could do nothing, but still would.


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Blynda
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Chelle

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Reply with quote  #30 
We tried B-100 complex but gives my son acid, so now we are going to try just B2. Blynda do you get the Vitacost brand B2?

We had him take a questioner from our Chiropractor and that suggested some different supplements that could help with GI type issues. We want to try the B2 first before we look at other supplements.   He is still having short episodes every few weeks.  

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Chelle
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