Vitamins

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Wldhrtd1

Guest
hello all.... new to the group and have been lurking for about a month.. lOl mom to 2 boys (men) both Df508... 25 and 17.. Both have relativity mild CF.. althou 17 y.o. is on home IV's to be finished on Friday!! my question is about vitamins.. the youngest HATES the aquadek both tablets and gel and refuses to take them so right now he's on one a day pro edge.. the vit e and k are low so was wondering what people do to add additional k and e?? thanks!!
 
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Ratatosk

Administrator
Staff member
DS is 10 and has always take additional Vitamin E -- 400 IU once a day, as well as additional A 10,000 IU and a 5 mg tablet of Vitamin K (mephyton) once a WEEK. He also takes Aquadeks soft gels twice a day. Was on Source CF, but we haven't been able to get it due to mfg issues.
 
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cheerfulpuppies

Member
I use the vitamax chewable, cherry flavor. Yes they are not the same amount of the a,d,e,&k but that works better for me because my vit a levels went too high with the adeks. Also the adek gels upset my stomach and I would constantly burp up vitamins for hours so I didn't want to take them. The regular over the counter vitamins do not have a water soluable form of the fat soluable vitamins so even if the numbers are higher but you don't absorb them what's the point. So even if the vitamax is less a,d,e,&k but you actually take them and can absorb it that is better than nothing. Also based on the lab values the doctor can always suggest taking 2 a day instead of 1. The vitamax comes in cherry, grape, and orange.
 
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erock77

Member
OTC vitamins are not the same as CF specific ones. The whole point is that ADE & K are fat-soluble vitamins which we don't absorb as well. The CF specific vitamins formulate them in a water-soluble form so we can absorb them better. It sucks that the softgels aren't available anymore, but he should take one of the ADEK options.
 
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Printer

Active member
When we have CF there are many things that don't want to do but we must do them. Taking vitamins is one of the easiest of our self-obligations. Tell your boy (man) to grow up and stop acting like a 10 year old.

Bill
 
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scarecrow

New member
I have to agree w/ Bill. Tell him that there is always a reason when you end up on IV anti-boitics. If all we had to do was take vitamins every day most of us would still be in great health. If he can't even do that, what else won't he do? Life doesn't get any easier. As much as it seems like all the things we have to do every day take away from our life, in the long run it is just the opposite.
 
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Ratatosk

Administrator
Staff member
I looked at the vitamax vitamins for ds when Source CF wasn't available and the levels were just too much out of whack IMO for DS -- He'd practically have to take them by the handfuls to get the amount he needed. Fortunately he doesn't have issues with the aquadeks softgels -- takes one with breakfast and another when he gets home from school. Had to laugh one holiday when he slammed a handful of enzymes at age 3 while his 19 year old cousin's mom said she still gave her chewable pain reliever 'cuz she couldn't swallow pills.
 
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Wldhrtd1

Guest
scarecrow and printer.. I get what you're saying.. althou not what to say about it.... and he does all his treatments without issue... therapy vest, tobi e/o month, hypertonic... went to clinic yesterday.. off iv's.. PFT's up to 85 from 70/74, chest crystal clear.. had long discussion with nutritionist re: vitamins and eating properly to gain weight... she told me that there is a new vitamin available .. but there is a waiting list for a soft gel as of now.. she said she thought that they only sold to the southwest?? just wanted to pass on the info... https://mvwnutritionals.com/product...ist=101&woocommerce_waitlist_nonce=747082014d
 
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LittleLab4CF

Super Moderator
I have posted on this topic before but there is more to the song "A Spoon Full of Sugar" than rhyme. Pharmacists candy coat medicines all the time. I take AquaDEKs myself and realize the vitamins are contained int the gel caps. Walgreens will coat or flavor medicines, see if they can do something with the vitamins. Compounding pharmacies, the local variety, can disguise anything.

LL
 
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AleksandraKaczynska

New member
when we have lack of AquADEKs in EU we are to use regular multivitamins for kids - however we always make sure with our cf dietician - which ones and in how high dose.
However quADEKS is considered best for cf'ers and maybe try giving one aquadeks and one common - the one your dietician will agree too
 
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Boncloe

New member
That is a very important substances but the source should be natural this is how i feel,You should have stuff that has a good amount of vitamins in it and that should be natural that is all you need.
 
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hannahj1d

New member
I have a question on vitamins in the insurance regard. Does your insurance pick up your aquadeks or ADEK vitamins? I have tricare and today I went to pick up my multivitamin and it would've cost me $60. However, that is not something I can afford so I couldn't get it, I have a few days left but does anyone know of any way to go about getting them cheaper?
 
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Ratatosk

Administrator
Staff member
Our insurance never covered DS' vitamins, so I'd always buy them and pay out of pocket. Sometimes the clinic would give me samples. Are you on Creon or Zenpep? I know creon has a program where they send you vitamins and nutritional shakes or protein bars if you fill out a form and send in the receipt for your enzymes...
 
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hannahj1d

New member
I take Creon. I've never had a problem getting AquADEKs, SourceCF, ADEK, etc etc, if anything i've only ever had to pay $5. Do you know where I can get this form to send into Creon?
 
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cheerfulpuppies

Member
My insurance has never paid for my vitamins. In fact they won't even dispense them and let me pay out of pocket so I have to get it filled through the cf pharmacy and pay for it out of pocket. Vitamax vitamins are $20 for 90 chewables. So that is $7 per month for 1 a day or $14 a month if you were to take it twice a day.
 
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cfhope

New member
Try Libertas multi with ABDEK. I get them from CF services pharmacy, have different types drops, softgels, and bubblegum chewables. They also have a site where you can buy but does not seem to be working yet www.abdeks.com
 
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Michelsu

New member
There is a new line of CF-specific vitamins for you to try. They are called MVW Complete Formulation. Go to the website to learn more about the products- MVWNutritionals.com.

Look at the vitamin comparison chart to compare the content to other products. The high vitamin D softgels are not yet on the comparison chart, below you will find a description of them. Read a description of each product at the website. Ask the RD at your center for a sample. Many centers throughout the US have samples. All of the products have been taste tested by healthcare professionals, parents and persons who have CF.

All of the products reflect the most current evidence for vitamins for persons who have CF.

The company has a liquid that is different from other liquids because it is made with MCT oil and the dose for a newborn is 0.5 ml. As an alert, it is “thicker” than what you might be used to, this is because it is oil-based. The oil keeps all of the vitamins and the zinc suspended so they don’t fall to the bottom of the bottle. Like all CF-specific vitamins they must be taken with enzymes. Read a full description at the company website.

The company has 2 Softgels and each contain the same amount fat and water soluble vitamins plus zinc, with the exception of vitamin D. The big difference between the regular softgel the Softgel 3000 is that the softgel 3000 has 6000IU vitamin D for 2 softgel.

There is one orange flavored chewable vitamin right now but a really great bubble gum flavored chewable will be available very soon.

Remember, all vitamins either OTC or CF-specific need to be taken with a fat-containing food and/or liquid and enzymes so that the fat-soluble vitamins can be absorbed.
 
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