Wednesday, March 20, 2013

CoQ10, Irritability and Vitamin B2


These past few weeks have been awful with Marley.  Her third grade teacher had about exhausted every trick in her book.  The resource room teacher was afraid of Marley just coming into her room to get out of her daily activities.  She expressed concern to me when Marley confided in her she “hated school.” 

Marley has been irritable, miserable, anxious and sometimes downright defiant.  Like when she got up from her desk at school and turned to face the class and said, “I’m outta here!” and left.  Who knows where she was going…she just didn’t want to be there anymore.  She screamed and cried about everything.  Every single day I was getting a call from the school.  Their absolute last ditch effort to get her to comply…..mom’s threats of taking something cherished away. 

I knew her anxiety was through the roof when she started chewing on her fingernails again and simply tearing off the skin around her fingers.  We had worked so hard to get that in check earlier this year….to see it back again was heart-breaking.  Things were simply getting worse despite my best efforts to reward, bribe, and even threaten her with removal of cherished items.   

When things like this happen, I always look to what has changed.  An environmental factor?  A new supplement?  More expectations placed on her?   Maybe.

Could it be yeast?  No…we’ve had that in check for a while and she has been on Syntol with good results before this started.  And no recent antibiotics to speak of.

Could it be PANDAS?  No, she hadn’t been sick and there wasn’t any OCD about it.

Then I thought back to when I started her on CoQ10.  It was about a week before all this started to happen.  Since Marley has low energy and CoQ10 is excellent for mitochondrial issues, I thought this would be a slam dunk….but I was beginning to think again. 

So, I took her off the CoQ10 for about 3 days.  She was a bit less irritable but still cranky.  So back on it she went.  Then…the shit hit the fan.  She had a meltdown at school when another student got to publish his story on the iPad.  She walked out of the classroom again. I was called and went over to the school (with my 2 year old in tow) to talk her down.  After I left, she escalated again and had to eat lunch in the principal’s office and spent the afternoon in the resource room.  She was a mess.  It was a Friday.  There was an emergency team meeting called for the next week.  What were we going to do?

But…by that point, I was pretty sure I had it figured out.  It was the damn CoQ10.  But why?  All my research said that a rare side effect of CoQ10 was irritability, but no reasons why.  My husband said – “Pull it!  Don’t give her any more” and of course I didn’t give her anymore, but I needed to know why this was happening.  If only I knew why, I could fix it.

I started to dig.  Thank God for my network of biomed moms.  One told me to go directly to the electron transport chain and look there.

Turns out that CoQ10 works to metabolize succinic acid, which requires B2 and CoQ10 to be metabolized in the electron transport chain. Once it uses more B2, then it decreases the supply of B2 available for the metabolism of other amino acids to make neurotransmitters, especially, serotonin.  And we know serotonin is the "feel good" neurotransmitter.  Serotonin plays an important part in the regulation of learning, mood, sleep, etc.   And experts say serotonin may have a role in anxiety, migraines and appetite.

So I pulled out her last Organic Acids profile from last year.  Sure enough….there it was.  Her suberate was high meaning that she needs more B2.  Riboflavin or B2 also helps to metabolize fatty acids.  Out of curiosity, I looked back at her labs over the years at her suberate levels.  It was high dating back 7 years! 

I took a week doing this research and meeting with her team at school…but I was pretty sure I had it under control.  She was off the CoQ10 and not so irritable but still not very happy.

And so, starting on Saturday morning, I started her on a broken down form of Vitamin B2 called Riboflavin 5’-Phosphate Sodium.  She was a bit better on Saturday.  Sunday, she was happier.  By Monday, she was excited to go to school and read her non-fiction book she wrote on Chipmunks to an audience of parents at her author appreciation day.  (She is NEVER excited to go to school on Mondays.)  By Tuesday afternoon, I got an e-mail from her teacher saying…”whatever you are doing at home--- keep doing it!  Another awesome day at school today!”  No more nail biting…no more anxiety…no more crankiness. 

Once her B2 levels are up to sufficient levels, I should be able to reintroduce the CoQ10 without problems.  I’ll give her body time to get adjusted before I go there again. 

And there you have it.  When I say that I treat my daughter’s autism using biomedical interventions…this is what I mean.  We need to understand what is going on in the body in order to treat it.  Simply throwing an antidepressant at the problem does not allow the body to heal on it’s own.  And if I would have taken her to a psychologist or neurologist that’s what I would have gotten.  Her neurologist flat-out told me he doesn’t know how to read the amino acid tests and that is the lab tech’s job.  (Needless to say, he is no longer her neurologist.)

Well, in our house, it’s MY job to read the amino acids tests and do the research because unfortunately, no one else is going to do it. 

Here’s my girl reading her non-fiction book on Chipmunks!








17 comments:

  1. That makes so much sense! My little guy has been so grumpy and tearful since we started the CoQ10 and so I started digging and came across this post. We have him on a B complex vitamin, but I just checked the label and it doesn't include B2. Off to buy another supplement....

    Thanks for posting!!

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  2. Thanks so much for the posting. I am getting ready to start my 9 year old son on CoQ10 and I'm so glad I found your blog. After reading your information, I got my son's Organic Acid Test results out to take a look. Aha ! He is low in in B12, B2, CoQ10 and Biotin. Is your daughter taking a multi-vitamin. My son is taking Super Nu Thera (and was taking it at the time the OAT was ran. I will definitely start with the B2 for a little while before beginning the CoQ10.

    Thanks for the information
    Jennifer

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  3. Hi, was so interested in your post about the CoQ10 and B2. After a short bit of being on CoQ10 with my daughter i noticed her more irritable and just wounded up stoping it. However as i read your blog and looked on her last OAT in Dec sure enough she did have a issue with B2..was high which indicated a need for it. Could you tell me how your daughter is doing on the b2 today and did you ever retry the CoQ10 at this point with any luck?
    Thanks so much!
    Donna

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    1. Hi Donna! My daughter is doing well on B2. (B vitamins can feed yeast, so we have to keep an eye on that.) I have not yet reintroduced the CoQ10 but plan to do so soon!

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  4. Well that's great.. glad to hear she is still doing well on it! My husband and i looked at her picture and found it interesting that she looks a little similar to our 11 year old daughter! (especially when our daughter used to have bangs) lol Could you tell me What brand did you go with and the amount you give her daily?
    thank you!
    Donna

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    1. We started with Thorne Research to get her levels up but switched to a B Complex (Jarrow B-Right) because B vitamins work synergistically. It's best to dose them together if you can. Good Luck!

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    2. Thanks for this. I've been taking Q10 and have the same symptoms as your daughter. My wife was gonna kill me. I'm taking Mitochondrial Energy by life extension which has the good B2 so hopefully it will help. Thanks again.

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  5. Would you be willing to give an update on your thoughts on CoQ10? Thank you for your blog! Your writing about three generations of family is moving.

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  6. We have my son on the broken down b2-hard to find-we have to purchase from a ND 2 hrs away.

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    1. Thorne and at least a half-dozen other companies make a r5p supplement, probably cheaper than the one you get at the ND's office.

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    2. Yes, Thorne makes a great product called r5p. This what we use and love. You can buy it from amazon or straight from their website.

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  7. Hi. I am aware that this is an older post but maybe you can help. After much research and an abnormal acylcarnitine profile (including slightly elevated glutarylcarnitine), I started my daughter on a high dose of riboflavin a couple of days ago. The way you describe your daughter on the CoQ10 alone is very similar to how my daughter is acting. My question is, do you think if the B2 is given without the CoQ10 could it have the same effect as giving CoQ10 without B2? Also, how do you give the supplements to her. Does she swallow pills or is it tasteless enough to slip in food and drink? I found a tasteless B2 called Cyto2 but it is not the riboflavin 5 phosphate form you speak of. Thank you!

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    1. Heather,
      Do you have a functional medicine doctor? These are good questions for a doctor. My blog is about personally noting our experience, but I don't know how other kids would react.
      Do you belong to facebook? Another place you could ask this question is at the FB group "Recovering Kids". It is a closed group, so you would need to apply to join. It is a great group with tons of info like this.
      Good Luck! -Kelly

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    2. I think the opposite scenario can cause problems as well, if given for a long enough period: Plenty of B2 but no CoQ10 should lower the latter to eventually become deficient.

      At least that's what I'm hoping. My health has sharply deteriorated over the last 4 years and I just realized I was taking coq10 on an almost daily basis up until about 2010, then ordered it about 7 times in 2011, only 2 times in 2012, 2013, 2014, and 3 times this year. All along I was taking B2 twice a day which helped me tolerate b6.

      Five years ago I could walk. I've been using a wheelchair for the last 2 1/2 years. Hoping that the lack of coq10 plays into this somehow.

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  8. Hi Kelly, I know long time ago but just got my sons OAT back and looked at levels - which indicator showed b2 levels? Suberic, sebacic or succinic? Many thanks

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