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We are gluten free, soy free and only do raw cheese and yogurt. When both my boys turned 1 I started them on a smoothie made with coconut milk, coconut oil, hemp protein and brown rice protein. Check out my blog and see if anything intrigues you :) chasing-truth.blogspot.com Would love to be...

I am pretty that Culturelle has a product that is 10 billion units each serving. Before the boys could swallow pills, I would just pour the contents of the pills in yogurt and they ate it great. We truly found that the vitacost brand works great and is ALOT cheaper!!! blessings, missa

I have found that the culturelle works well while the boys are on antibiotics....but we use a product by vitacost that has 10 different strains that seems to be working great http://www.vitacost.com/vitacost-probiotic-10-20-20-billion-cfu-100-vegetarian-capsules-1 If you give the...

How high of a dose are you doing of probiotic??? We do at least 30 billion units when the boys are on antibiotics. blessings, missa

Big Star, I wouldn't be surprised if the baking soda did help!!! Talk to your docs and see what they say.. blessings, missa

sorry, I am used to the old version of the cf forum, where we had a little blurb at the end of our post...I had my blog there:) http://chasing-truth.blogspot.com/search/label/Cystic%20Fibrosis blessings, missa

The sodium bicarbonate comes in 650 mg pills. My 5 year old takes 1/4 of a pill and my 8 1/2 year old takes 1/2 a pill. They disintegrate pretty quickly, so you could put it in something else, just not sure how it would taste??? I have heard of people drinking water with a little baking soda...

We were able to convince the docs to do the higher range of enzymes, which worked tremendously. I believe they usually go by 2500 units of lipase and we usually dose between 2500 and 3000. The huge things that we are doing that did a complete turn around for my oldest is add sodium...

WE do a lot to keep the boys from getting sick and it seems to be working...I will just tell you all we do and perhaps you might be interested in some of it. If they do end up getting sick, we just up everything we do on a regular basis. We do high doses of Vitamin C all the time..I believe...

At this point we use a Germ Guardian for drying the boys nebs...it is supposed to be a dry sterilizer, but it gets no where near the temp it needs to get to sterilize, but it is an excellent way to dry the nebs. The problem is, that they are no longer being made:( When we are without our Germ...

We just traveled with the huge/old vest. I carried that sucker all throughout 2 airports and I would suggest getting a little luggage trolley...they have them at target for $25. We were able to fit it in the overhead on one plane and we had to gate check it on another, due to it being too big...

I would look into magnesium!!! Most people with CF are lacking magnesium and it could be associated with growing pains. This is the blogpost I did a while back on the subject.. http://chasing-truth.blogspot.com/2010/04/magnesium-and-cystic-fibrosis.html blessings, missa

Look into an herbal product called Iberogast. It made a huge difference in my sons life...He went from puking at at least one meal a day and being on the verge of a feeding tube, to no puking and significant weight gain. blessings, missa

Shannon, Neither had eb/mi....my first was diagnosed due to failure to thrive and second was diagnosed with Ambry testing and sweat test...

WE have 2 with CF!!! We knew the second could have CF. We did not do the amnio. We did do an ultrasound a month before his due date to check for MI. The biggest things I would suggest, is look into getting this child life insurance!!! We were able to sign a life insurance plan on our...

We never had any adverse effects from putting it in the applesauce and my son was an infant/newborn at the time. talk to your dietician and see what she thinks...i never talked to mine, because she was very stuck on the way their clinic did things... I would just have the formula powder in a...

I have actually worked 6 plus years with adolescents and adults with all types of eating disorders and I have 2 boys with Cystic Fibrosis. Ask away with any questions you have, I would love to help!!! you can just private message me... blessings, missa

We had issues with both boys gaining weight in the beginning...I was made to give up breastfeeding with the first and was determined not to go there with the second. SO....i concocted my own plan :) We did supplement with formula, but what i did was add it into the applesauce that I was using...

WE struggled with this for quite some time. Magnesium helped a tremendous amount. Magnesium is also very beneficial for cfers!!! This is the blogpost I did a while back... http://chasing-truth.blogspot.com/search/label/Magnesium blessings, missa

It looks like you have a reason for your docs to file an appeal to get Lansoprazole approved. If he was fine with that and now not so much, I would go back to the liquid and just see if things change. We had the same thing happend to us when we started anti-acids. We went for years with...