WARNING: the foods we cook for Abby are safe for her, but not necessarily for everyone. Please confirm any ingredients are safe for you before using in your diet. Food Allergies can kill and the best policy is complete avoidance. Read this post for more info.

Friday, October 12, 2012

No Mito Cocktail, No Guilt.

If you are at all familiar with the Mito World, then you know the first thing you hear is about the Mito Cocktail.

Basically just supplements, over the counter. A few compounds can be prescribed, but often those with Mito need to find clean,safe and properly evaluated supplements- no easy task. When we do find them it can literally cost more then a house payment each month to supplement the patient or family.

We tried them, and even compounded them- they made Abby terribly sick. We think some of the reason is that the compound pharmacy wasn't as careful as we wanted(compounding out of pocket is OUTRAGEOUSLY expensive) and even the cleanest supplements and vitamins have some tiny bit of hidden corn that everyone thinks is so small it could never bother someone with a corn allergy- Ha! Tell Abby's body.

I gotta say I was feeling a level of guilt that after just a month or two we quit trying to find any cleaner,safer versions. At first, Abby was sooo sick it just wasn't a priority, simply trying to get even chicken broth into her was a challenge.

The last few months as we are enjoying a level of stability I have begun thinking about it again. Do you know, I don't think anyone ever tested her CoQ10 levels in the beginning. My theory, why take a supplement when you don't know whether you need it or not?

So the last trip to the Mito Specialist Abby's levels for the components for the Mito Cocktail were tested. Guess what? They were all perfectly and deliciously normal.

Not everyone needs the cocktail, and shockingly a lot of patients are recommended to take and spend the fortune on it( insurance doesn't cover much if any)and their levels have never been tested.

Too much of a good thing, might be as dangerous as not enough.

The one level that came back low low as usual was Abby's D. Seems like a very common thing with all populations not just Mito. We have tried supplementing in the past and never got her level up, but trying again. She cannot take it by mouth, after a few days the minute amounts of hidden corn will start to build. So we ordered vitamin D oil and have been rubbing her skin with it. Who the heck knows if it will work, but it has alleviated some of my guilt and so far after a couple weeks it seems her skin isn't as sensitive and she hasn't flared directly. I have poked around a bit about D and haven't found any secret way to jump her level, but it seems temporary large doses don't cause harm if we are forced to do that down the road. One tip I thought was interesting- don't use the egg whites in the carton, separate your own egg whites.

Are you paying 500-1000 dollars a month for supplements? Have you had your levels tested via lab to know if you really need to be supplementing?

We are content not supplementing since her levels are good-normal. Unless, some serious fab research can prove to me and my insurance company that I NEED to be blowing a house payment on supplements, thinking Abby is just fine without.


Anonymous said...

I recently found your blog and am fascinated at finding someone who understands the difficulties of a child with a corn sensitivity/allergy and mito. My daughter is currently undiagnosed, but has known metabolic/mitochondrial issues. She has a carnitine deficiency and has done well taking supplemental levocarnitine. She's doing much better now than she was years ago (she's almost 10), but we're not sure why -- hard to know exactly what's working when you're not sure exactly what the problem IS in the first place! Lots of ambiguous non-diagnostic abnormal labs, etc. Her energy is much better now, her episodes of metabolic decompensation far fewer, but why she is not growing well remains a mystery.

Anyway, she was GFCF and corn-free for about 7 years. Only recently added back wheat. Corn is sooo hard to avoid, and her doctors think I'm crazy -- that a corn "allergy" is "rare". But, I saw the horrible side effects even teeny tiny amounts had on her.

What form of Vitamin D is low for Abby? We recently found out my daughter's D, 25-OH is a very low-normal, BUT her D 1,25 is actually high. I've read that a high D 1,25 often occurs with a low D 25-OH. Her endocrinologist said because of the elevated D 1,25, we can't supplement Vitamin D. (She has poor bone density). But we have no idea why her D 1,25 is so high because we don't supplement!

Anyway, thanks for your blog!

Laura said...

I agree Diane. I would never put Will on something unless there is a scientifically demonstrated need. No longer will I accept a doctor saying, "Try this pill, let me know if it works" again! That is plain and simple experimentaion. My son is not nearly as sensitive as your Abby, but he has unusual reactions to many pharmaceuticals.
He takes a rather large number of vitamins, but we have tests that show he needed each one and tests that show they have reached stable normal levels. I believe he will have to take them the rest of his life to maintain good health, but when you see him play baseball ( he is pretty good!), it is worth it and a small burden compared to what some children must endure.
I am tired of doctors who experiment on us and then judge us when we do not cooperate! We each must find what works and makes us as healthy as possible. You and Abby are trailblazers for many who have been dismissed because they don't react like everyone else.
We are off to see Dr. Frye in Arkansas Monday.

Diane said...

Hugs Laura! I take my fair share of vitamins and meds- I think sometimes folks misunderstand I am sure you guys get that too! Its not that we are absolutely against vitamins chemicals etc- it is that we have to take the time to really know and be aware of what is in it and whether it is a safe choice for our "sensitive" kids !

I would absolutely love to post something about Dr. Frye here! Talk about trailblazers- he is the advocate for so many and does an amazing job! If you ever wanted to write a summary for me to post, I would love it! :-)

Diane said...

Oh Thank you for posting Anonymous! So glad you found me, and so nice to have someone else who "gets" this crazy journey! Yes, for the most part Drs. look at me like I am insane when I explain she reacts to bottles of water, toilet paper, hidden corn in vitamins etc. They Don't get it! I am hoping after her GI heals up more we can add back at least gluten.. just the dairy,soy and corn have wiped out most food choices! LOl She was struggling to digest anything so we removed the gluten hoping it was reduce the irritation. So far so good!
The test shows D3 low- but you know, I certainly don't remember any other levels mentioned! Thank you for mentioning that, when we go in again I can ask them to do blood work to make sure our oil isn't causing any problems! Thank you! You might have just protected Abby from a major flare! See- I wish Drs. would tell you this stuff! Sigh!

Terry said...

Hi, This is Anonymous from above. I'll try to post under my name Terry now!

But which form of D3 is it? -- 25 OH or 1,25? The endo tested both of these in my daughter for the first time. D3 is produced in the body (as opposed to D2 which comes from food and supplements), and if the 1,25 version of D3 is high, it can cause low levels of the 25 OH form of D3. Confusing, I know. Hope that makes sense. The little that I've read so far about high D 1,25 tells me it's possible that it can cause side effects...from kidney stones to ?? But I haven't looked into it well yet. Endo just said they don't know that much about it other than to tell me to not supplement with D, neurogen also deferred on the issue...still working on finding a doctor who will address this finding!

My daughter has a history of extreme GI pain from tiny tiny amounts of calcium supplements. I always blamed the tiny amount of cornstarch contained in the vit. D in the calcium powder, but now I wonder if it was from her apparent problem with the whole calcium-magnesium-vitamin D metabolism process.

We figured out her corn sensitivity when she was 2 and she was eating a lot of corn products because we'd just begun GFCF (on our own out of desperation to help her when the GI and other docs weren't -- but that's another long story!) At that point, hindsight explained some of her problems with baby foods -- cornstarch is used as a thickener, and of course ascorbic acid/citric acid is in baby foods too. I'd kept a food journal from those days, and looking bad, could now clearly see the connections.

Oh yes, tell a doctor about corn in toilet paper, paper towels, etc., and they really think you're nuts! Heck, I couldn't believe my daughter would react to such things either, but I saw it with my own eyes! My daughter had severe eczema as an infant, got much better after we made diet changes. Only the pediatric dermatologist (who we only saw twice before she left the area, and only saw to diagnose a stubborn rash they ultimately called lichen planus) understood when I meekly asked what form of a cream she was prescribing (because I'd found out creams were BAD for DD, ointments generally better -- because of the inactive ingredients in them). But it was such a sigh of relief to be acknowledged rather than scorned -- even about such a small thing! Other docs and even pharmacists thought I was nuts! Putting a cream with corny ingredients on her eczema is like fanning the flames of a fire! The worst problem, though, is the issue of IV dextrose in the ER; try getting an ER doc to understand that dextrose is BAD for your kid, even in the face of a blood sugar of 32. And teachers at school -- oh, I could go on!!!

We tentatively started to add gluten back about a year ago. She had some odd symptoms (never sure if it's from food or what!) and some GI issues at first, but a year later, she seems to be tolerating it. BUT, it has to be corn-free forms of gluten. Apparently all these wonderful "enriched" products aren't so wonderful for corn-sensitive people. :( I've only managed to find one corn-free form of regular wheat baking flour -- Archer Farms at Target. I'm not trying to encourage you to add gluten back to Abby's diet -- I wouldn't if there's still any signs of current GI problems -- but just giving you our experience if at some point in the future you think you can!

Laura said...


I, too, agree about sensitivity. Will cannot take all vitamins. He reacted very badly to all forms and doses of L-carnitine we tried ( double vision and headaches). Dr. Frye said he had a few patients not tolerate carnitine and felt that it was possibly causing the built up toxins in his cells to be released too fast.
Dr. Frye's assistant called me yesterday to ask us to participate in another study. They are trying to figure out how mito dysfunction/disease in children with autism is different than others with mito disease. The most interesting part, is that they share Will's test results with us - usually the tests are not available commercially - so it has provided some interesting insight into his "autism" and/or health issues.

Kristy Williams said...

I can relate to this, too. Although not to the same scale. With both my pregnancies, docs wanted me to take iron. Didn't need it. Levels were fine. I took individual supplements with my son and did fine. With my daughter, I actually had to stop taking all supplements because they were making me so ill. My OB was not happy at all. Too bad - she wasn't the one dealing with the dis-ease. It's a shame that there aren't more doctors that think outside the box or are at least willing to listen. Afterall, who knows your body better than you when it comes to symptoms/reactions and figuring out what's contributing to it! At 4 years old, my son took a few sips of milk and told us it didn't taste "right". Darned if when we looked at the label, we saw that we'd accidentally grabbed one with vitamin D added to it.

Diane said...

Oh Terry! Boy does your a lot of your journey sound familiar! Sigh!

I am making an appt for Abby to talk to the Dr about D- Thank you again! I need to get more information on D before we fret about levels and supplements.

I think we probably need to wait on the gluten- sounds like we will have to order it too if we want corn free! I swear corn is in everything! Thank you again for sharing your journey- every time we hear about someone else who can relate to our journey, we feel much less alone :-)

Diane said...

Laura- that sounds like a terrific study! Dr. Frye just gets better and better! I am so glad you are able to travel to him- I feel terrible for the families stuck here in Houston.

I just wish they knew more about the cocktail.. and that very much like Mito itself, the different parts of the cocktail are not good everyone. :-) I am happy to hear Dr. Frye gets it! So does Abby's Mito Specialist.

Thanks for updating me! I was wondering how your trip went!

Diane said...

Kristy- I did not even think about being prego! Boy, they do push the vitamins- I cannot even imagine the arguments that corn allergy sufferers have with Ob/Gyn's when it come to vitamins! Sigh.

I cannot tell you how many times this year I have accidentally "corned" poor Abby! Interesting though, she is like your son and 9 times out of 10 she can tell by taste if something is safe too!

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