This cocktail thing is NOT working for us...

[Guest guest]

Just when i thought we were making progress last week! We removed

the Vitamin C, and he seemed to improve (he was having diharrhea,

and im assuming stomach cramps but he cant talk so were not sure for

certain).

By Friday he was a wreck!

It's almost like he gets panic attacks... their like mini tantrums,

where he completely falls apart over absolutely nothing... i would

chalk it up to terrible 2's except he seriously ONLY does it when

hes on the suppliments, as soon as we stop them, he stops freaking

out...

does anyone else see behavioural disturbances with the suppliments?

Its hard because when i try to explain it to the nurse, she just

assumes hes being 2 (which it sounds like), but without the

suppliments he is a very content little boy...

I really want him on the cocktail though because we do see

improvements in other areas... he sleeps FAR less, he has more

energy, stumbles and falls less, and oddly his attempts at speech

pick up...

So now were off it completely again... he happy and sleeping and

falling and not talking. but the falling and sleeping and not

talking seem worth it because he is so much happier...

ugh... this sucks.

Im thinking we will give him a week, then start him on JUST the

CoQ10, and see if he can tolerate it for a few weeks, then introduce

the vitamins one at a time maybe even at a lower dose?

did anyone else have trouble getting their kiddos to tolerate it?

did they eventually do ok on it, or did you have to scrap the whole

thing??

[Guest guest]

This probably won't be any help but it's just what I thought of

when I read your note. Sheldon (3) only has tantrums when he's doing

well. My theory is that when he's healthy is the only time that he

cares enough/has enough energy to get upset over not getting something

he wants. If he's not doing well and doesn't get what he wants, he

just forgets about or doesn't care enough to do anything about it. May

be conserving energy, who knows. Or may be that when he's not doing

well his short term memory is so bad that he doesn't remember wanting

something long enough to get upset. This might not even be what you

are experiencing...

Just when i thought we were making

progress last week! We removed

the Vitamin C, and he seemed to improve (he was having diharrhea,

and im assuming stomach cramps but he cant talk so were not sure

for

certain).

By Friday he was a wreck!

It's almost like he gets panic attacks... their like mini

tantrums,

where he completely falls apart over absolutely nothing... i

would

chalk it up to terrible 2's except he seriously ONLY does it when

hes on the suppliments, as soon as we stop them, he stops freaking

out...

does anyone else see behavioural disturbances with the

suppliments?

Its hard because when i try to explain it to the nurse, she just

assumes hes being 2 (which it sounds like), but without the

suppliments he is a very content little boy...

I really want him on the cocktail though because we do see

improvements in other areas... he sleeps FAR less, he has more

energy, stumbles and falls less, and oddly his attempts at speech

pick up...

So now were off it completely again... he happy and sleeping

and

falling and not talking. but the falling and sleeping and

not

talking seem worth it because he is so much happier...

ugh... this sucks.

Im thinking we will give him a week, then start him on JUST the

CoQ10, and see if he can tolerate it for a few weeks, then

introduce

the vitamins one at a time maybe even at a lower dose?

did anyone else have trouble getting their kiddos to tolerate

it?

did they eventually do ok on it, or did you have to scrap the

whole

thing??

Please contact mito-owner with any problems or

questions.

[Guest guest]

Grace was much quieter before the cocktail, but it was because she did not have the energy to "act up". She is now a very vibrant 2 year old who can throw one big tantrum if she wants to. Obviously each kid is different, and reacts to the medicine in different ways.

On another note, we can account most of Gracies extra energy to the CoQ10. She is much more quiet when she does not get it.

It may sound strange, but we were happy to finally have to disipline Grace. Before her cocktail, she was just too good to be true. Now there are days, I wish I had my quiet Grace back (but healthy, of course.)

Best wishes, I hope you can find a good combination to help him.

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[Guest guest]

We had considered this, I even mentioned a week ago or so that i was

happy to see him finally having tantrums like a normal 2 year old...

and i do take it as a sign that he has more energy... the tantrums we

can deal with, but these panicky episodes are what im worried about...

Its almost like he hyperventilates... rarely is it over anything in

particular (he will have a tantrum over something he cant have or

wants... but these panick episodes are over nothing at all often)...

most often it happens right before he fills his diaper, which makes me

worry its related to stomach cramps (As its often accompanied with

diharrhea)

I thought the same way about the CoQ10... i think it was the source of

his energy increase, so it is the first thing im going to reintroduce,

and i REALLY want him on it...

do you use Qgel? I tried ordering some but cant get it here i need to

have it shipped to a US adress, then mailed to me from there.. not a

problem as i have lots of family in the US, just a pain...

right now we have capsules that we have to break into applesauce and

mix up... im wanting to track down some flavored chewables available

in canada... might make it easier to give at least...

Keely (mom to , 28 months, Tyler 6 weeks)

>

[Guest guest]

Yes we do use the q gell, brand chewables. Have you tried calling epic 4 health, so you can have it directly shipped to your house? The currency exchange would be no problem as long as you put it on your credit or debit card, and I can't imagine why they would not ship to Canada. I don't have the phone number off hand, but you would be able to find it on the website www.epic4health.com. I have also seen chewable CoQ10 at GNC and other vitamin stores. The price is comparable, but not sure of it's effectiveness as compared to the Tischon brand. We have not tried them since we have no problems with the Tischon brand.

Not to doubt you or anything, but could these new attacks be a really bad temper tantrum (even for no reason.) One of my older children (non mito) would have serious fits in which she would actually hold her breath until she passed out for no real reason. We could be anywhere, at anytime and she would get so mad, and would pass out. I never understood what would set them off, but often they were when she was tired, hungry or was not feeling well. I got some really weird looks in stores when my child lay unconsious in the isle, and I would not be too concerned. Thankfully she outgrew this behavior, but has since been diagnosed with ADD.

I hope you can find the answer to his episodes, to help them stop.

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[Guest guest]

When Leah was first started on the cocktail at about 13 months of age;

it was very slowly. One supplement at a time. And it was about at

least three weeks giving her one supplement, and then adding another.

When she was first on the cocktail it consisted of B50, carnitor and I

believe B1. I'll double check with my husband. I know it wasn't much.

Now Leah is on several supplements all mixed together with her liquid

carnitor. I would suggest doing that. One supplement for a couple of

weeks to see the reaction. Take care.

Nerenhausen

mom to Leah

ilikemonstertrucks wrote:

>Just when i thought we were making progress last week! We removed

>the Vitamin C, and he seemed to improve (he was having diharrhea,

>and im assuming stomach cramps but he cant talk so were not sure for

>certain).

>By Friday he was a wreck!

>It's almost like he gets panic attacks... their like mini tantrums,

>where he completely falls apart over absolutely nothing... i would

>chalk it up to terrible 2's except he seriously ONLY does it when

>hes on the suppliments, as soon as we stop them, he stops freaking

>out...

>does anyone else see behavioural disturbances with the suppliments?

>Its hard because when i try to explain it to the nurse, she just

>assumes hes being 2 (which it sounds like), but without the

>suppliments he is a very content little boy...

>

>I really want him on the cocktail though because we do see

>improvements in other areas... he sleeps FAR less, he has more

>energy, stumbles and falls less, and oddly his attempts at speech

>pick up...

>So now were off it completely again... he happy and sleeping and

>falling and not talking. but the falling and sleeping and not

>talking seem worth it because he is so much happier...

>ugh... this sucks.

>

>Im thinking we will give him a week, then start him on JUST the

>CoQ10, and see if he can tolerate it for a few weeks, then introduce

>the vitamins one at a time maybe even at a lower dose?

>did anyone else have trouble getting their kiddos to tolerate it?

>did they eventually do ok on it, or did you have to scrap the whole

>thing??

>

>

>

>

>

>

>

>Please contact mito-owner with any problems or questions.

>

[Guest guest]

just to give you another experience with vitamins. when my daughter

was first dx (1.5 yrs old) she was put on the cocktail. we never

saw any behavioral stuff or anything else for that matter. so,

after being on it for 9 months, she was taken off. her levels were

always the same (with cocktail vs. no cocktail), so in the end she

no longer takes any vitamins. they just didn't make a difference in

her case.

bethany

mom to brennan 8, palmer & anna grace (leighs) 5

>

> Just when i thought we were making progress last week! We removed

> the Vitamin C, and he seemed to improve (he was having diharrhea,

> and im assuming stomach cramps but he cant talk so were not sure

for

> certain).

> By Friday he was a wreck!

> It's almost like he gets panic attacks... their like mini

tantrums,

> where he completely falls apart over absolutely nothing... i

would

> chalk it up to terrible 2's except he seriously ONLY does it when

> hes on the suppliments, as soon as we stop them, he stops freaking

> out...

> does anyone else see behavioural disturbances with the

suppliments?

> Its hard because when i try to explain it to the nurse, she just

> assumes hes being 2 (which it sounds like), but without the

> suppliments he is a very content little boy...

>

> I really want him on the cocktail though because we do see

> improvements in other areas... he sleeps FAR less, he has more

> energy, stumbles and falls less, and oddly his attempts at speech

> pick up...

> So now were off it completely again... he happy and sleeping and

> falling and not talking. but the falling and sleeping and not

> talking seem worth it because he is so much happier...

> ugh... this sucks.

>

> Im thinking we will give him a week, then start him on JUST the

> CoQ10, and see if he can tolerate it for a few weeks, then

introduce

> the vitamins one at a time maybe even at a lower dose?

> did anyone else have trouble getting their kiddos to tolerate it?

> did they eventually do ok on it, or did you have to scrap the

whole

> thing??

[Guest guest]

Hi!

I wonder if maybe the tantrums are being two, he just feels more energetic and like a two year old when he feels better? Is it possible that when he doesn't take the supplements he is too tired to care about anything and just wants to sleep? I know that Collin had a harder time learning to talk clearly, and he would get frustrated because he couldn't tell me how he felt, which led to tantrums. Once his speech improved and he clearly could tell me what he wanted, he stopped with the tantrums, although he is still very strong willed and says exactly what he means! Some of the homeschoolers in our area teach even their typical toddlers sign language because it is thought to lessen tantrums in the pre-school years due to frustration of communication gaps. Take care, Joni

ilikemonstertrucks wrote:

Just when i thought we were making progress last week! We removed the Vitamin C, and he seemed to improve (he was having diharrhea, and im assuming stomach cramps but he cant talk so were not sure for certain). By Friday he was a wreck! It's almost like he gets panic attacks... their like mini tantrums, where he completely falls apart over absolutely nothing... i would chalk it up to terrible 2's except he seriously ONLY does it when hes on the suppliments, as soon as we stop them, he stops freaking out... does anyone else see behavioural disturbances with the suppliments? Its hard because when i try to explain it to the nurse, she just assumes hes being 2 (which it sounds like), but without the suppliments he is a very content little boy... I really want him on the cocktail though

because we do see improvements in other areas... he sleeps FAR less, he has more energy, stumbles and falls less, and oddly his attempts at speech pick up... So now were off it completely again... he happy and sleeping and falling and not talking. but the falling and sleeping and not talking seem worth it because he is so much happier... ugh... this sucks.Im thinking we will give him a week, then start him on JUST the CoQ10, and see if he can tolerate it for a few weeks, then introduce the vitamins one at a time maybe even at a lower dose? did anyone else have trouble getting their kiddos to tolerate it? did they eventually do ok on it, or did you have to scrap the whole thing?? Please contact mito-owner with any problems or questions. __________________________________________________