starting supplements/questions

[Guest guest]

Suzanne

we have never seen any energy bursts that would effect her sleeping. We give Max her mito cocktail with a shake. I use yoghurt smoothie and mix it all up in blender. If she likes vanilla shakes, try mixing it with that. Just mix it in a little bit, as much as you know she'll drink. For our girl that is about 3 oz. She is 5. Masking taste I think is very important. CoQ10 does come in a liquid form by a company called Tishcon. It is very good quality. The paharmacy can also sell you a pill crusher, made out of plastic, which grinds any other components/pills into a fine powder.

Hope this helps. Good luck

regsrds,

rosy , mum to max 5

[Guest guest]

HI-First of all,I don’t participate much on the list,

however I do keep all of you and your kiddo’s in my prayers…

Regarding my 2.5 year old, Zoe, we are starting supplements

tomorrow- CoQ10 w/ a drop of VitE, Alpha Lypoic, Thiamin and LCarnitor. The

LCarnitor is liquid twice per day and the rest are in dry form I will crush and

I guess combine w/liquid( see below) and use a syringe since getting her to eat

or drink something offers no guarantees.

About the only liquid my daughter likes is milk or a

chocolate milk as special treat, vanilla shake, but that doesn’t sound

like a good idea. So I was thinking just an apple juice to mask the tastes of

the supplements… any better ideas? Also, do any of these energy

supplements cause increased energy bursts as in hyperactivity or problem

sleeping? Any substantial side effects I should look for??

I appreciate the help. Thanks!

Suzanne in Arizona

[Guest guest]

When we give Grace her medications orally (she has a g tube) we usually give them in milk. I know it sounds gross, but it is all she will drink. We try to do only one or two things in each drink. Another thing you may try is to put the crushed pills in applesauce or something else she really likes to eat. One warning on this, though, we did this for a long time with Grace and as she figured out what we were doing she stopped eating all together (this is why she had the g tube placed). I know that is a very unusual case and most people have success with putting medications in food. Also you may want to try chewable Co Q10. Grace loves them and even calls them candy (we don't encourage her calling medicine candy, but she still does). You can get them through www.epic4health.com. If you mention that she is a mitochondrial disease patient they will give you a discount.

We have never noticed any bad side effects of the medications. The only thing we have seen is that the Co Q10 gives her more energy. We usually give her the second dose in the late afternoon to evening, just to give her the energy when she needs it.

Best wishes.

[Guest guest]

Sheldon is also on CoQ10, Thiamin, and Carnitor. We get the

chewable CoQ10 from Tischon, he loves them so it's no problem at all

to get into him. He also doesn't mind the carnitor most of the time,

we use a syringe for that one. The B1, however, tastes really gross.

If he's not doing well it makes him gag and vomit so unfortunately he

only gets the B1 when he's healthy. I usually crush it and put it in a

mouthful of chocolate syrup. I usually give the chewables after the B1

to help him get the taste out of his mouth.

We haven't noticed any side effects to these.

HI-First of all,I don't

participate much on the list, however I do keep all of you and your

kiddo's in my prayersŠ

Regarding my 2.5 year

old, Zoe, we are starting supplements tomorrow- CoQ10 w/ a drop of

VitE, Alpha Lypoic, Thiamin and LCarnitor. The LCarnitor is liquid

twice per day and the rest are in dry form I will crush and I guess

combine w/liquid( see below) and use a syringe since getting her to

eat or drink something offers no guarantees.

About the only liquid my

daughter likes is milk or a chocolate milk as special treat, vanilla

shake, but that doesn't sound like a good idea. So I was

thinking just an apple juice to mask the tastes of the supplementsŠ

any better ideas? Also, do any of these energy supplements cause

increased energy bursts as in hyperactivity or problem sleeping? Any

substantial side effects I should look for??

I appreciate the help.

Thanks!

Suzanne

in Arizona

Please contact mito-owner with any problems or

questions.

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[Guest guest]

Hello -

You may want to look into having a compound made with all the supplements together.... I have a friend who owns one of the largest compounding pharmacies in the country. I've been having them compound s CoQ10... and it works really well for us that way... their prices are also less than half of what I was quoted by a local pharmacy that does compounding... and they ship anywhere for a minimal fee....here is the info to get in touch with them...

Head Compounding Pharmacist... Ron Keech... others can also help ...

The Village Green (formerly called the Apothecary) (located in Bethesda, MD near the NIH)

1- (you want the custom compounding department)

you might also try to locate their website which I think is www.myvillagegreen.com

Let me know if you have any problems reaching them....I hope they can help....

Please let them know that I gave you their name...

Fossett

-----Original Message-----From: Embroidery Journal Sent: Wednesday, October 06, 2004 6:22 PMTo: mito Subject: starting supplements/questions

HI-First of all,I don’t participate much on the list, however I do keep all of you and your kiddo’s in my prayers…

Regarding my 2.5 year old, Zoe, we are starting supplements tomorrow- CoQ10 w/ a drop of VitE, Alpha Lypoic, Thiamin and LCarnitor. The LCarnitor is liquid twice per day and the rest are in dry form I will crush and I guess combine w/liquid( see below) and use a syringe since getting her to eat or drink something offers no guarantees.

About the only liquid my daughter likes is milk or a chocolate milk as special treat, vanilla shake, but that doesn’t sound like a good idea. So I was thinking just an apple juice to mask the tastes of the supplements… any better ideas? Also, do any of these energy supplements cause increased energy bursts as in hyperactivity or problem sleeping? Any substantial side effects I should look for??

I appreciate the help. Thanks!

Suzanne in Arizona

Please contact mito-owner with any problems or questions.