Pancreatic Insufficiency

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texaslady22

New member
Hi All:

My daughter is 7 months old. She was born around 25% and, since then, has dropped to .4% so she's very Failure to Thrive. She eats and eats but she just doesn't gain weight. She's still in 0-3 month clothes at 7.5 months! The GI just informed us yesterday that fecal elastase results were back and it was 137. We got a sweat test at a CF center today and are waiting on the results.

I know that things likely point to CF, but has anyone heard of a low fecal elastase that wasn't CF? What would be CAUSING her pancreas to have problems if not CF?

And her newborn screen was normal (in AR), does that mean anything?
 
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nmw0615

New member
Newborn screenings aren't always correct. My newborn screening did not show I had CF, but after struggling to gain weight, my pediatrician referred my parents and me to the CF clinic and the CF docs. After a sweat test and more genetic testing, my parents found out, when I was 8 weeks old, that I did have CF. it does happen.
 
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Printer

Active member
Newborn screenings are for less than 100 mutations. You would need 2 mutations to dx CF. There are almost 2000 mutationd in total. The screening that your child had did not consider almost 1900 mutations.
 
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Aboveallislove

Super Moderator
Dear Mom,I am so sorry you are facing this. You must be so scared both just with the failure to thrive and then the added worry of CF. I don't know re the fecal test, but re state newborn screening: Every state does the testing differently. I had a good friend whose daughter had 1 gene on newborn screen and while they waited for sweat tests I researched to see what was tested and their state only tested 5. So, it is possibly that your State's newborn doesn't test that many mutations and thus it is CF and just not caught. I tried to find what Arkansas' tests but it isn't on line, so impossible to know. While you wait for the results, though, I thought you might find the following threads helpful to get a handle on what a CF diagnosis would mean from here out. Also, if she has CF and wasn't caught on newborn screening, it is possible it is a rarer mutation which might benefit from a new drug called Kalydeco. Please write back when you know and if you have any questions. DH and I do cyber free weekends but I'll try to answer anything I can on Monday. Hugs and Prayers,LoveThreads:http://forum.cysticfibrosis.com/thr...n-diagnosed-with-CF-through-Newborn-Screening
 
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texaslady22

New member
I know my daughter is likely to have it due to the pancreatic insufficiency, the failure to thrive, and the low vitamin levels. We're just waiting on the sweat test results.

If she does, what do we need to do? My husband and I have been talking about ripping out the old carpet in our house and replacing with wood, buying whole-home air filters, installing an outdoor handwashing sink...what would be most important for us to do? What steps should we take?
 
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Aboveallislove

Super Moderator
The first thing I would recommend is to get the basics of the daily care down and under your belt. You're going to go from daily worry over weight to being overwhelmed with treatments, medicines, sterilization, as well as "normal" baby things and wondering how you can do it all. The links I provided (hopefully you can access), lay out the "normal" day and also importantly what the first CF visit will look like. Once you start enzymes your daughter will likely start gaining pretty quickly. That will help. But you'll also have lots of breathing treatments, etc. So . . . I'd start by reading those, thinking through your schedule, maybe even putting together a schedule to help you monitor meds, treatments, poops, food etc.

Re the household stuff: It is all a balance. Everyone balances different and frankly from a coping perspective, especially for a dad, I think some of those things will help. My husband immediately started researching furnances and we quickly replaced to one with HEPA and UV light and I truly think it was one of the best decisions b/c we live where it is cold and we are inside alot and have allegeries and the furnace system has worked wonders--DS 3.5 has not yet had any cold/flu/sinus infection. That doesn't mean that is the reason but it is reassuring to us. But if money is tight and you cannot afford, making sure it is clean and good filters is important. Re the carpet: I also like that idea but you need to consider if it is affordable and remember it is a balance--it won't protect her from CF but it might give you some peace of mind. I actually don't like the outdoor sink b/c it could harbor stuff there and a purell inside the door is fine. But remember it is a balance and you can't do everything. I remember hysterically proclaiming as we drove home from the CF Center at the first appointment we're moving to X (the city where the Center was). Think through what makes most sense money-wise and if you think you'd appreciate the change in any event, i.e., the floors versus the carpet, keeping in mind that there is some natural panic there, but also a need for your husband to be the protector and that this is a concrete way he can feel that.
Hugs and prayers and let me know if any questions,
Love
 
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Skramers

New member
Hi, just incase you don't have your results yet, both my children have been diagnosed with pancreatic insufficiency without cystic fibrosis. There are a few medical conditions aside from CF that also have pancreatic insufficiency as a symptom however these are much less common. Let me know if she is is negative for CF and I can let you know a couple of other avenues to look at.

Take care.
 
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texaslady22

New member
The sweat test was negative but the doctor's sent off for genetic testing and still suspects CF or SBD syndrome. We are getting yet another fecal elastase test and yet another abdominal ultrasound (even though the first one was normal). The doctor said that sometimes the sweat test can be negative and the baby could still have CF. We've lost another 3 ounces this week.
 
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Printer

Active member
The sweat test that is administered at a local hospital is NOT the same sweat test that is administered at a APPROVED CF CLINIC. You need to have your child seen at an APPROVED CF CLINIC BY A CF SPECIALIST.
 
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