New CF vitamin DEKAs
Just wanted to let you know there is a new CF vitamin available called DEKAs - if you have any questions I will try and answer them for you. (Source: Cystic Fibrosis Nutrition Forum)
Source: Cystic Fibrosis Nutrition Forum - November 23, 2015 Category: Nutrition Authors: BarbaraRS Tags: Nutrition Source Type: forums
aquADEKS on Ebay
In Europe and Canada, the aquADEKs multivitamin drops (pediatric) is no longer available. In Europe there is still no substitute.
I would like to know if there are aquADEKs available in USA. I would like to buy it. Anyone know where I can buy it?
I found aquADEKS drops for sale on ebay (bluemedical) but I'm not sure if the product is still on production.
Is it possible the aquADEKs for sale on ebay is not the original?
Someone has any knowledge about this? (Source: Cystic Fibrosis Nutrition Forum)
Source: Cystic Fibrosis Nutrition Forum - November 13, 2015 Category: Nutrition Authors: taafom Tags: Nutrition Source Type: forums
Giving newborn salt
Hello everyone, my 11 week old daughter has just been diagnosed with c.f.. The doctors told us we need to start giving her 1/8th tsp of salt everyday. The problem is they told me to give it to her straight (wet my finger, dip it in salt then put it in her mouth a few times a day) and not to mix it with any water or my expressed breast milk. I guess they don't want her to associate feedings with a negative taste. I have been following their instructions so far but she absolutely hates it and screams when I give it to her, which usually makes her cough from being so upset. Anyways, I was just wondering if any other parents o...
Source: Cystic Fibrosis Nutrition Forum - October 16, 2015 Category: Nutrition Authors: Martina Banks Tags: Nutrition Source Type: forums
Just discovered an easy high fat product
DS is extremely picky but I've discovered I can expand his food acceptance with familiar foods that have something new...so I tried these which have pizza and cheese and bacon but also egg. It's super easy to cook and very delicious and now he's asking for scrambled eggs whereas before he would have nothing to do with them....I'm going to wait a few more times before moving on to the eggs, but am happy to have this as an easy meal when it's a hectic day. He also does better with crunchy solids and so it's also a good option for those in the toddler want to feed myself stage.
https://www.redbaron.com/products/si...es/defa...
Source: Cystic Fibrosis Nutrition Forum - August 31, 2015 Category: Nutrition Authors: Aboveallislove Tags: Nutrition Source Type: forums
Not absorbing pills
I've noticed that some of my pills are not getting absorbed at all and ending up in my stools even though I'm taking 6 enzymes. Has anyone else had this issue? Were you able to fix it? (Source: Cystic Fibrosis Nutrition Forum)
Source: Cystic Fibrosis Nutrition Forum - August 27, 2015 Category: Nutrition Authors: kenna2 Tags: Nutrition Source Type: forums
How do you maintain appetite ??
Now that I am off prednisone I don't have half the appetite. What do you do to maintain your appetite? (Source: Cystic Fibrosis Nutrition Forum)
Source: Cystic Fibrosis Nutrition Forum - August 8, 2015 Category: Nutrition Authors: Dank Tags: Nutrition Source Type: forums
pickles anyone?
I do not have cf...but my daughter does. She's one and seems to really like pickles. So I was wondering uf a sodium thing or if a pickle taste thing. Anyone with cf love pickles? Does it make you feel better. Anyone drink the juice? I once read that one shot of pickle juice has as much electrolytes as a bottle of gaterade. But I dunno how true that is. (Source: Cystic Fibrosis Nutrition Forum)
Source: Cystic Fibrosis Nutrition Forum - July 22, 2015 Category: Nutrition Authors: lrs2015 Tags: Nutrition Source Type: forums
not gaining weight at 1 yr
I am a parent of a cf child. I've posted a thread like this before wanting advice on helping my lil one with weight gain. I've been giving her pedisure, pudding, cheetos, yogurt, juice, vd milk, and now I bou ghten new stuff like chef boy'rd cheese ravoli , and just all kids. One sugessted I use ovaltine. So I got ovaltine and nesquick to add. But she's teething and is being real finicky. Calories are getting so hard to get into her diet. I'm just running out of ideas on what I can do to help her gain weight and eat more. I need what ever advice any one has. Yes salt and adek viatims are added in her diet. I just don't kno...
Source: Cystic Fibrosis Nutrition Forum - July 17, 2015 Category: Nutrition Authors: lrs2015 Tags: Nutrition Source Type: forums
No enzymes?
What happens with a person that has CF and does not take their enzymes when they eat? Besides stomach aches, do they have really oily loose stools??? does it happen every time some one forgets to take their enzymes, or just some of the time??? Is stomach cramping common with this also? What if the doctors diagnose with "malabsorption" does that necessarily mean pancreatic insufficient ?? (Source: Cystic Fibrosis Nutrition Forum)
Source: Cystic Fibrosis Nutrition Forum - June 20, 2015 Category: Nutrition Authors: princesskinzy Tags: Nutrition Source Type: forums
need ideas for help gaining weight for my lil one.
I have a 1 yr old with cf. She always seems to be two pounds lower than they would like her to be. Shes just so small. Cutest darn thing though so funny even at a year. I seem to have tried a lot. Tried avacados, nope she don't like them. Sour cream, strawberry syrup, maple syrup, ciannamon , sugar, ice cream bars. How do I get her to take food even when she refuses. Some days she eats like a pig 700-950 calories a day. Sometimes only 600-750. Dietiation tells me she needs to be eating around 900. We've condensed her formula, now were tryingvto switch her between whole milk and pedisure drinks. So much difficulty trying t...
Source: Cystic Fibrosis Nutrition Forum - June 6, 2015 Category: Nutrition Authors: lrs2015 Tags: Nutrition Source Type: forums
The risks of cystic fibrosis diet
Hey guys,
Do any of you know if there's a risk to eating such fatty foods that our nutritionalists are always encouraging? I know it's important to keep our weight up, but what about the long term affects? What about increased risk of heart disease from such unhealthy foods? I just want to make sure that adding extra calories to each of my meals isn't going to affect more of my health in the future.
Lots of love. (Source: Cystic Fibrosis Nutrition Forum)
Source: Cystic Fibrosis Nutrition Forum - May 25, 2015 Category: Nutrition Authors: sheilaaa14191 Tags: Nutrition Source Type: forums
Vitamin Programs
My pharmacist just called asking where we get our CF vitamins as he received a call from a nurse at a CF clinic who had a patient who needed aquaADEKs, but insurance doesn't cover and parents couldn't afford. Last month I ran out of cf vitamins and had to order online and a 30 day supply ran me $30-40 out of pocket....
I sent him the links for CFCareforward which is where we get vitamins after we submit receipts from DS' creon and the link for the Zenpep program, which appears to be similar. Are there any other programs which provide vitamins for people wcf? (Source: Cystic Fibrosis Nutrition Forum)
Source: Cystic Fibrosis Nutrition Forum - May 20, 2015 Category: Nutrition Authors: Ratatosk Tags: Nutrition Source Type: forums
Survey: CF nutrition requirements
Hello everyone! (Source: Cystic Fibrosis Nutrition Forum)
Source: Cystic Fibrosis Nutrition Forum - April 20, 2015 Category: Nutrition Authors: Manvi Makhijani Tags: Nutrition Source Type: forums
Vitamin D advice
I got some bloodwork back and my D level is 15 (normal is 30-100, according to my dr). I have been taking supplements on an off over the year. I guess I need to be on and on. :)
I'm wondering if anyone has a brand of Vit D supplement or a food they recommend. Since I have non-CF bronchiectasis, I don't take ADEKs, but am curious if anyone has advice anyway.
I read some of this article http://ods.od.nih.gov/factsheets/Vit...hProfessional/
and saw that Cod Liver Oil has 1360 units per Tbsp, which is 340% of the DV. I'm wondering if anyone has tried that? Or if the oil/fat of that option makes it a no-go.
On a side note,...
Source: Cystic Fibrosis Nutrition Forum - April 6, 2015 Category: Nutrition Authors: Melissa75 Tags: Nutrition Source Type: forums
Negative reaction to enzymes, anyone pretty familiar with them?
Hey guys, first off sorry for having a ton of questions, I'm new to being treated for cf and this forum has been great.
I was wondering if anyone has ever has any adverse reactions to enzymes? I was prescribed zenpep and every time I take it I have an adverse reaction, the best way I can describe it which sounds odd is I basically have the symptoms that the enzymes are meant to help. I will have bad stomach pains as soon as I eat with them and then go to the bathroom where I have floating loose stool, but any other time my stool sinks normally. But what's worse is I get the worst intergestion ever with them like a tightne...
Source: Cystic Fibrosis Nutrition Forum - March 14, 2015 Category: Nutrition Authors: Mike Brown Tags: Nutrition Source Type: forums
