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shelly76

Mitochondrial deficiency

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Hi All,

I've been on here for a while, but have never posted. My son developed blinking tics 4 years ago, and we just now got an accurate diagnosis. His mitochondrial respiratory chain complex- 1 was at a 1.07 value showing significantly below normal range. I'm very new to this and everything I have been reading online is terrifying.  I just found out days ago, and I don't know what the prognosis is for something like this. I'll have a lot more questions for the doc next month, but for now, she's loaded us up with supplements. I knew this was going to be tough for my son because he has significant sensory issues with food, tastes, and textures. So far, he's been able to tolerate a few things... we are moving slow, but the most important from what I hear/read is the CoQ10. I was instructed to purchase a liquid form (doubt we can say name brands) that tastes like pineapple and my son cannot even get half the required dose in without gagging about 10 times. I've already spent so much money on supplements and this is just the beginning.  Any parents out there that have children with sensory issues to foods? He will only drink water and milk, and I couldn't even hide the flavor in milk. He hates juices, the textures of yogurt, smoothies-- any of that. Maybe a powder out there that I can dissolve in milk with little flavor? I know many supplements are harder at masking than others. Next will be aminos and I bet those will be tough too!

My son is fatigued, a lot of weight gain, low muscle tone, sensory issues, issues with large and fine motor skills, and very poor attention. He battles strep often and is back on an antibiotic. Cunningham Panel sort of ruled out PANDAS, but possible PANS.

He also has too much dopamine floating around, poor receptors that inhibit, and I believe the doc said something that produces too much because his body senses too little?  This could be the cause of the tics? Ugh... so much going on and so much information.  I'll be asking many questions about all of this, but as mentioned, I really need suggestions for some flavorless or more tolerant flavors of CoQ10 that I can hide in milk.

Thank you!

 

 

 

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Hiding supplement flavours is not something I have had experience with  - I'm sorry, it sounds like a tough problem.  There is a just little bit of discussion at the bottom of this thread:

https://latitudes.org/forums/topic/12438-cod-liver-oil-in-am-or-just-a-good-day/?tab=comments#comment-103886

If you search mitochondrial once you are in this group, you will find some discussion on that.
 

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We are using a product called mitospectra. It’s expensive $100 per 90 caps. We give 4 caps per day two morning and nite. It’s reduced symptoms by 80-90 percent.

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Hi Nikki,

This product looks great and capsules  are always a plus for me because I can hide them in milk unless the flavor is very strong.   Thank you for the recommendation. I’m going to order this! 

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Dd has problems swallowing large pills and caps so we grind them and put them in a small medicine cup like the one for cough syrup. She doesn’t complain about the taste.

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