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Old 02-17-2010, 03:39 AM   #1
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alicem88 HB User
Question borderline cf with some symptoms

Hi

I'm now 21 and have been diagnosed that i don't have full blown cf but am borderline. When i was 4 months old i had to have an emergency intussuception operation. Also around this time (i'm not sure if was before or after) i had projectile vomiting. I have also had the lumber punch test when i was around 2 as they thought i may have meningitis, however this was negative. Through my whole life i have suffered with really smelly, long stools. When i was 3, i saw my 1st lung specialist who said i just had asthma. This wasn't the case and saw a lovely specialist who worked around the world and he did the sweat test when i was 7. It was negative, however he said i was borderline and that was why i had some of the cf symptoms. I was put on various medications including steroids to help with ongoing chest infections.
When i was 14 i was admitted into hospital for 7weeks with chronic compaction of my bowel. I was in severe pain to the lower left of my stomach an hour after eating (this could just be eating a few grapes as my appetite was low). My gp thought i was making this up and sent me to see a shrink as all tests were coming back normal (story of my life).
Since then i have been admitted to hospital 3 times for stomach issues and once for my breathing. I'm seen by a cf team in a special cf unit. However, they sent me to see a gastro consultant to see if they could do anything for my bowel problems. I was told there is a problem with my large bowel, but he wasn't prepared to do anything to find out what this problem is. I'm taking senna and lactulose everyday and still having difficulty in opening my bowels. I have a Klean prep session every month to try and clear me out, but this doesn't seem to fully work. I feel stuff there ready to go, but it feels like i have no energy to remove it or that my muscles are too weak to do it.

Has anyone else had this problem.

Many thanks

 
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Old 02-17-2010, 07:33 AM   #2
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Ratatosk HB UserRatatosk HB User
Re: borderline cf with some symptoms

First of all. There is NO such thing as borderline CF. That's like saying you're half pregnant. You either have it or you don't and it sounds like based on your symptoms you do. My son had a sweat test and passed it with flying colors; however, his genetic BLOOD tests showed that he does in fact have CF. He mostly has digestive issues and is on enzymes to help him digest his fats.

Are you going to an accreddited Cystic Fibrosis Facility. If not you should. IMO RUN from the doctor you're seeing to get proper treatment.

There are over 1500 genetic mutations for CF, so you need to get a blood test to see what your mutations are.

 
Old 02-17-2010, 08:51 AM   #3
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alicem88 HB User
Re: borderline cf with some symptoms

Hi

I have had a generic test and i don't carry any of the recessive genes for cf. So i don't have cf full blown (this is what we are struggling with as a don't fit any medical category)! I am seeing a cf specialist at an accredited cf institute however he thought a more specific gastro doctor may be more helpful to me (although this wasn't the case).

Many Thanks

 
Old 02-17-2010, 09:04 AM   #4
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Re: borderline cf with some symptoms

A lot of times they will only test for the most common genes -- 30-100 instead of the 1500 genetic mutations for CF. Probably would be best for you to see a gastro specialist. Maybe you need a different digestive enzyme, maybe a different kind of laxative... Here in the states a lot of people use miralax on a regular basis.

Last summer my son had a bowel obstruction. Turned out he had some surgical scarring (adhesions) from when he was a baby that prevented food AND his digestive enzymes from moving thru in a timely manner. So basically it was as if he wasn't on enzymes at all, which caused an obstruction. We've since upped his digestive enzymes significantly and for the first time ever he has had normal looking stools instead of rainbow colors, floaty, bulky ones with an oil slick on top of the water.

 
Old 04-10-2010, 02:13 PM   #5
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skram HB User
Re: borderline cf with some symptoms

my son has sweat test result of 55 and being retested at sick kids hospital on tues,but weird thing is has had symptoms since birth -diagnosed with cyclic vomiting when doc couldnt figure it would be anything else-will post next week when we have results -his age is 15

 
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