Hi, I'm new to the CF Forums. My son has not been officially diagnosed, but there is high suspicion for CF. He is currently 7 months old. The plan is to treat him as if he has CF, until proven otherwise.
He has to take Creon capsules with microspheres with every meal and he hates it. He harbors them in his mouth and we were told he can't do that because of the potential for burns and sores. We were told there used to be a powdered version on the market that has now been discontinued. We were also told we could not crush the beads or try to dissolve them because that would change the functionality of the enzyme.
Are there other parents in our situation, and how are you doing this? We have tried everything from: suspending the beads in syrup and giving them through a syringe, mixing with food (that led to a feeding aversion), giving some beads and immediately chasing with water or pacifier.
This is all quite new to us, so any assistance will be helpful
Highlights in his history:
<ul>
<li>Meconium ileus at birth, requiring surgery</li>
<li>Intermittent vomiting and diarrhea, even after the switch to a hypoallergenic formula</li>
<li>Low albumin (leading to think of some type of protein-losing enteropathy, with CF as a possible differential diagnosis)</li>
<li>Low IgG</li>
<li>Same weight since he was 4 months old</li>
<li>Negative for sweat chloride</li>
<li>The three of us were negative for the most common panel of gene mutations</li>
<li>My husband is Spanish and 1/4 Italian. I am Filipino and 1/4 German.</li>
</ul>
He has to take Creon capsules with microspheres with every meal and he hates it. He harbors them in his mouth and we were told he can't do that because of the potential for burns and sores. We were told there used to be a powdered version on the market that has now been discontinued. We were also told we could not crush the beads or try to dissolve them because that would change the functionality of the enzyme.
Are there other parents in our situation, and how are you doing this? We have tried everything from: suspending the beads in syrup and giving them through a syringe, mixing with food (that led to a feeding aversion), giving some beads and immediately chasing with water or pacifier.
This is all quite new to us, so any assistance will be helpful
Highlights in his history:
<ul>
<li>Meconium ileus at birth, requiring surgery</li>
<li>Intermittent vomiting and diarrhea, even after the switch to a hypoallergenic formula</li>
<li>Low albumin (leading to think of some type of protein-losing enteropathy, with CF as a possible differential diagnosis)</li>
<li>Low IgG</li>
<li>Same weight since he was 4 months old</li>
<li>Negative for sweat chloride</li>
<li>The three of us were negative for the most common panel of gene mutations</li>
<li>My husband is Spanish and 1/4 Italian. I am Filipino and 1/4 German.</li>
</ul>