Vitamin E supplementation levels

[fkewatson]

Thank you. These are the levels I was expecting to hear about. You see, in order to keep my son's Vit E-related sensory issues under control, I have to give him 2400IUs d-alpha tocopherol and 1200mg d-gamma tocopherol daily (yes, you read that correctly). I spread it out in 3 doses through the day. These are HUGE amounts for a small fellow and yet he will begin to regress within the hour if a dose is not given on time (5 hours between doses). We are at those levels now after slow increases given over the past 9 months (beginning with 200 IUs).

I keep reading that 100-200IUs is recommeded for CF malabsorption issues. I posted on another thread that I think he has another gene mutation going on beside his one delta F508 - only this time it is hetero or homozygous with the alpha tocopherol transfer protein gene (aTTP). The amount of Vit E I have to give him is within the range that the literature indicates is needed for people who have a defective aTTP gene. I'm having his blood drawn on Monday to find out.

 

[fkewatson]

Thank you. These are the levels I was expecting to hear about. You see, in order to keep my son's Vit E-related sensory issues under control, I have to give him 2400IUs d-alpha tocopherol and 1200mg d-gamma tocopherol daily (yes, you read that correctly). I spread it out in 3 doses through the day. These are HUGE amounts for a small fellow and yet he will begin to regress within the hour if a dose is not given on time (5 hours between doses). We are at those levels now after slow increases given over the past 9 months (beginning with 200 IUs).

I keep reading that 100-200IUs is recommeded for CF malabsorption issues. I posted on another thread that I think he has another gene mutation going on beside his one delta F508 - only this time it is hetero or homozygous with the alpha tocopherol transfer protein gene (aTTP). The amount of Vit E I have to give him is within the range that the literature indicates is needed for people who have a defective aTTP gene. I'm having his blood drawn on Monday to find out.

 

[fkewatson]

Thank you. These are the levels I was expecting to hear about. You see, in order to keep my son's Vit E-related sensory issues under control, I have to give him 2400IUs d-alpha tocopherol and 1200mg d-gamma tocopherol daily (yes, you read that correctly). I spread it out in 3 doses through the day. These are HUGE amounts for a small fellow and yet he will begin to regress within the hour if a dose is not given on time (5 hours between doses). We are at those levels now after slow increases given over the past 9 months (beginning with 200 IUs).

I keep reading that 100-200IUs is recommeded for CF malabsorption issues. I posted on another thread that I think he has another gene mutation going on beside his one delta F508 - only this time it is hetero or homozygous with the alpha tocopherol transfer protein gene (aTTP). The amount of Vit E I have to give him is within the range that the literature indicates is needed for people who have a defective aTTP gene. I'm having his blood drawn on Monday to find out.

 

[fkewatson]

Thank you. These are the levels I was expecting to hear about. You see, in order to keep my son's Vit E-related sensory issues under control, I have to give him 2400IUs d-alpha tocopherol and 1200mg d-gamma tocopherol daily (yes, you read that correctly). I spread it out in 3 doses through the day. These are HUGE amounts for a small fellow and yet he will begin to regress within the hour if a dose is not given on time (5 hours between doses). We are at those levels now after slow increases given over the past 9 months (beginning with 200 IUs).

I keep reading that 100-200IUs is recommeded for CF malabsorption issues. I posted on another thread that I think he has another gene mutation going on beside his one delta F508 - only this time it is hetero or homozygous with the alpha tocopherol transfer protein gene (aTTP). The amount of Vit E I have to give him is within the range that the literature indicates is needed for people who have a defective aTTP gene. I'm having his blood drawn on Monday to find out.

 

[thefrogprincess]

I know that I am an adult but thought I would just mention that it is a good idea to have your child's vit E level tested. Some CFers don't have a problem with it, other (me included) have to take huge amounts to keep a good level. The same is true with all the fat soluble vits. Personally, my vit A has never been a problem but no matter what I do I can't seem to keep a good level of D and E.

 

[thefrogprincess]

I know that I am an adult but thought I would just mention that it is a good idea to have your child's vit E level tested. Some CFers don't have a problem with it, other (me included) have to take huge amounts to keep a good level. The same is true with all the fat soluble vits. Personally, my vit A has never been a problem but no matter what I do I can't seem to keep a good level of D and E.

 

[thefrogprincess]

I know that I am an adult but thought I would just mention that it is a good idea to have your child's vit E level tested. Some CFers don't have a problem with it, other (me included) have to take huge amounts to keep a good level. The same is true with all the fat soluble vits. Personally, my vit A has never been a problem but no matter what I do I can't seem to keep a good level of D and E.

 

[thefrogprincess]

I know that I am an adult but thought I would just mention that it is a good idea to have your child's vit E level tested. Some CFers don't have a problem with it, other (me included) have to take huge amounts to keep a good level. The same is true with all the fat soluble vits. Personally, my vit A has never been a problem but no matter what I do I can't seem to keep a good level of D and E.

 

[thefrogprincess]

I know that I am an adult but thought I would just mention that it is a good idea to have your child's vit E level tested. Some CFers don't have a problem with it, other (me included) have to take huge amounts to keep a good level. The same is true with all the fat soluble vits. Personally, my vit A has never been a problem but no matter what I do I can't seem to keep a good level of D and E.

 

[thefrogprincess]

I know that I am an adult but thought I would just mention that it is a good idea to have your child's vit E level tested. Some CFers don't have a problem with it, other (me included) have to take huge amounts to keep a good level. The same is true with all the fat soluble vits. Personally, my vit A has never been a problem but no matter what I do I can't seem to keep a good level of D and E.

 

[fkewatson]

Yes, we keep tabs on his Vit E levels. We never tested him pre-supplementation, but while on 200IUs his level was just over normal at 24.7. While on 1200IUs it went up only one point to 25.8! You would have thought it would have shot up more, but it didn't. While on the enzymes and at 2400IUs it went up to 34.7. That is the only data we have so far. I'm getting them checked again next week when we do the blood draw for the gene testing.

Not much change in the plasma levels, even though they are a little north of the arbitrary "normal" levels, but HUGE clinical change in the kid. We also give Vit K and check those levels plus PT/PTT to make sure we don't induce a bleeding problem with the Vit E. So far, no worries.

 

[fkewatson]

Yes, we keep tabs on his Vit E levels. We never tested him pre-supplementation, but while on 200IUs his level was just over normal at 24.7. While on 1200IUs it went up only one point to 25.8! You would have thought it would have shot up more, but it didn't. While on the enzymes and at 2400IUs it went up to 34.7. That is the only data we have so far. I'm getting them checked again next week when we do the blood draw for the gene testing.

Not much change in the plasma levels, even though they are a little north of the arbitrary "normal" levels, but HUGE clinical change in the kid. We also give Vit K and check those levels plus PT/PTT to make sure we don't induce a bleeding problem with the Vit E. So far, no worries.

 

[fkewatson]

Yes, we keep tabs on his Vit E levels. We never tested him pre-supplementation, but while on 200IUs his level was just over normal at 24.7. While on 1200IUs it went up only one point to 25.8! You would have thought it would have shot up more, but it didn't. While on the enzymes and at 2400IUs it went up to 34.7. That is the only data we have so far. I'm getting them checked again next week when we do the blood draw for the gene testing.

Not much change in the plasma levels, even though they are a little north of the arbitrary "normal" levels, but HUGE clinical change in the kid. We also give Vit K and check those levels plus PT/PTT to make sure we don't induce a bleeding problem with the Vit E. So far, no worries.

 

[fkewatson]

Yes, we keep tabs on his Vit E levels. We never tested him pre-supplementation, but while on 200IUs his level was just over normal at 24.7. While on 1200IUs it went up only one point to 25.8! You would have thought it would have shot up more, but it didn't. While on the enzymes and at 2400IUs it went up to 34.7. That is the only data we have so far. I'm getting them checked again next week when we do the blood draw for the gene testing.

Not much change in the plasma levels, even though they are a little north of the arbitrary "normal" levels, but HUGE clinical change in the kid. We also give Vit K and check those levels plus PT/PTT to make sure we don't induce a bleeding problem with the Vit E. So far, no worries.

 

[fkewatson]

Yes, we keep tabs on his Vit E levels. We never tested him pre-supplementation, but while on 200IUs his level was just over normal at 24.7. While on 1200IUs it went up only one point to 25.8! You would have thought it would have shot up more, but it didn't. While on the enzymes and at 2400IUs it went up to 34.7. That is the only data we have so far. I'm getting them checked again next week when we do the blood draw for the gene testing.

Not much change in the plasma levels, even though they are a little north of the arbitrary "normal" levels, but HUGE clinical change in the kid. We also give Vit K and check those levels plus PT/PTT to make sure we don't induce a bleeding problem with the Vit E. So far, no worries.

 

[fkewatson]

Yes, we keep tabs on his Vit E levels. We never tested him pre-supplementation, but while on 200IUs his level was just over normal at 24.7. While on 1200IUs it went up only one point to 25.8! You would have thought it would have shot up more, but it didn't. While on the enzymes and at 2400IUs it went up to 34.7. That is the only data we have so far. I'm getting them checked again next week when we do the blood draw for the gene testing.

Not much change in the plasma levels, even though they are a little north of the arbitrary "normal" levels, but HUGE clinical change in the kid. We also give Vit K and check those levels plus PT/PTT to make sure we don't induce a bleeding problem with the Vit E. So far, no worries.

 

[Ratatosk]

As per our cf doctor, DS gets 1 ml of adeks vitamin drops twice a day and we were also instructed to give him a drop of vitamin e (puncture a 400 IU capsule) and a drop of vitamin A (8000-10000 iu) daily -- put it in his morning breakfast drink. Think the dietician measured out how many drops are in the Vitamin e and it's 4-5.

 

[Ratatosk]

As per our cf doctor, DS gets 1 ml of adeks vitamin drops twice a day and we were also instructed to give him a drop of vitamin e (puncture a 400 IU capsule) and a drop of vitamin A (8000-10000 iu) daily -- put it in his morning breakfast drink. Think the dietician measured out how many drops are in the Vitamin e and it's 4-5.

 

[Ratatosk]

As per our cf doctor, DS gets 1 ml of adeks vitamin drops twice a day and we were also instructed to give him a drop of vitamin e (puncture a 400 IU capsule) and a drop of vitamin A (8000-10000 iu) daily -- put it in his morning breakfast drink. Think the dietician measured out how many drops are in the Vitamin e and it's 4-5.

 

[Ratatosk]

As per our cf doctor, DS gets 1 ml of adeks vitamin drops twice a day and we were also instructed to give him a drop of vitamin e (puncture a 400 IU capsule) and a drop of vitamin A (8000-10000 iu) daily -- put it in his morning breakfast drink. Think the dietician measured out how many drops are in the Vitamin e and it's 4-5.