Baby stool Question

[Zuza Peck]

Does your little one also goes from chronic constipation to chronic diarrhea and then again constipation ? My son is gonna be screened for CF on Monday as he is FTT/GERD he has chronic cough and history of lung infections , he's poo is pale green and with huge amounts of mucus in it , he did not gain weight in 2 months ( lost a little over 1 lbs ) , he is 10 months old corrected 6.5 actual , he has Ot , Pt and speech therapy we are also on prevacid and zantac

Also he soes taste salty to the point that my tongue is tingling badly , he doesn't taste salty anywhere but his forehead ( hair line ) and feet ....

 

[Ratatosk]

DS has pretty much been on enzymes since he was diagnosed shortly after birth due to a bowel obstruction caused by meconium ileus. The year or so we struggled with frequent, very loose stools -- orange/yellow with flecks of green, greenish. -- mostly fluffy like cake frosting Sometimes when we'd have to clean him out with milk of magnesia, the stool would be incased in mucus. His stools were never greasy. Once he was potty trained, the stools would break apart easily in the water, but would leave a greasy residue at the water line. Have they done a fecal elastase test to check for fat in the stools. DS is very salty when I kiss his head, my lips taste salty and sometimes in the summer he has salt crystals in his hair or sweats salt (white residue) onto his baseball cap or shirts. He rarely coughed unless he got sick; however, we started cpt when he was just a day or so old to keep his lungs clear. Nose never ran because the mucus is so incredibly thick. He was on zantac for reflux and to help his enzymes work better. As for screening for cf --- keep in mind there are over 1600 mutations for cf and they usually only test for the most common mutations. So keep pushing for answers if initial testing comes up normal.

 

[Zuza Peck]

Thanks for answer , we had stool test done that said he had inflamed intestines and his sweat test came positive today as well

 

[Aboveallislove]

Mommy I'm so sorry. Please write any questions. Also, Rey important to insist they immediately do a blood draw to test for mutations. If they have but came back with no known mutations, then they need to do a full sequencing of the 1500+ possible mutations. There is a drug already FDA approved that can help some mutations and another that could be to market next year that could help more mutations. Sending hugs and prayers.

 

[Dowling]

Was he premature? How much does he weigh currently

 

[Zuza Peck]

yes he was Dowling , he is almost 11 months and 11.5 lbs at this moment

 

[Dowling]

Wat kinds of food does your lil pumpkin eat? Extra fat would help, pediasure instead of milk. Good for any skinny baby over 12 months , CF or not. Keep ur head up. You're doing gr8.

 

[Ratatosk]

If he's malabsorbing food (fat), then you should see a benefit when he starts taking digestive enzymes. DS was on formula with extra calories (more powder to water ratio) and when he was able to eat table food --- 6 months, we'd feed him what we were eating doctored with olive oil, butter or cream, extra salt... When we switched to whole milk, I added carnation instant breakfast and cream for extra calories.

 

[Zuza Peck]

Thank you ! he doesn't do any good with solids / baby food , he has some motor skills problems and can't eat Now we are being sent for Quantitative sweat test and to CF clinic in Orlando for further testing

 

[Helenlight]

Hi,

It's such a shock to the system isn't it? I remember all too well how rough it felt in the early days. Just know that now you are on a road that will lead to a much healthier baby. It sounds like he may need nasal gastric feeding? Once he is getting enzymes and plenty of nutrition/calories he'll really improve. Hang in there and come back to the forums as much as you need for advice and support.

Where abouts are you?

 

[Zuza Peck]

Thank you ! yes I am considering some kind of help for him as he's only able to eat tiny amounts of liquid stuff like squash and that's it , he ate about 20 oz of milk a day and that's also it no more sometimes less then that , We live in Melbourne Florida

 

[Zuza Peck]

HelenLight I'm not sure why it gave thumb down if i wanted to do thumb up :/

 

[Ratatosk]

DS really didn't like textures up until he was about 2 -- didn't like toast, crackers, ground meat --- I still gave him formula at home up until he was 1 1/2 years old and switched him to carnation instant breakfast made with whole milk and cream. He ate a lot of yogurt, spaghettios, finely ground up foods and still some baby foods --- apples & oatmeal, ham or turkey, sweet potatoes and corn, stage 2 mac & cheese. Pretty much would find something he'd eat and stuck with it. I once took half a case of mini spaghetti cans with us to Mexico 'cuz that was about the only thing he'd eat.

 

[Dowling]

Are you making his food or buying store bought stuff? If u have a good food processor you can get rid of textures completely and integrate then slowly. My daughter is 10 months old and I make everything that goes into her body from scratch , all organic as I did for my other two children 5 and almost 4( both without CF). I've done so much research on CF nutrition and holistic healing its nauseating. We are setting the standards now for their food habits when they are older. You're doing amazing with all you've been dealt. Hang in there