Any ideas?
My son has struggled so hard with weight. He is 5'5, and weighs 76 pounds. He is pancreatic insufficent, enzymes are not the issue. He is allergic to gluten, milk, dairy, soy, and rice. Plus he has autism and because of textures and tastes he will only willingly eat 7 foods. He does have a g tube receiving 10-12 hrs feeds a day. Still everytime we gain a few, he ends up loosing them. He tends to hover between 75-77 pounds.
gi doc is amazing and has tried just about everything. He and the dietician are speaking with specialists outside the hospital to try to find a new formula with higher calories for him. He even h...
Source: Cystic Fibrosis Nutrition Forum - February 13, 2015 Category: Nutrition Authors: jshet Tags: Nutrition Source Type: forums
Question for quantity of defecation
Hello everyone,
My daughter, nearly 5 years old, were defecating once daily, but since last moth she began to do it once in 2 or 3 days. But she does not have any stomach aches or other sympthoms,also she does not have any difficulty to defecate. Is that something that i should be doubtful? Is it a matter of pancreatic insufficiency which will cause an ileus? Any experiences please??
Thanks a lot (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - January 22, 2015 Category: Respiratory Medicine Authors: kguben Tags: Families Source Type: forums
MCAT practice questions
by goldstandard_mcat (Posted Sun Jan 18, 2015 9:29 am)Embryonic mesoderm in humans develops into which of the following structures?A. Liver and pancreas B. BrainC. Lining of the respiratory tractD. Skeleton ANSWER: DThe mesoderm develops into muscle and connective tissue which includes blood and bone (skeleton!), as well as circulatory, reproductive and excretory organs. The ectoderm produces the epidermis and the nervous system including the brain. The endoderm will become the epithelial lining of the respiratory tract, and the digestive tract including the glands of the accessory organs (i.e. the liver and pancreas). The...
Source: Med Student Guide - January 18, 2015 Category: Universities & Medical Training Source Type: forums
My Facebook rant to all those people who annoy me about Cystic Fibrosis
To those of you who don't know what Cystic Fibrosis is, here's the definition from the CDC:
"Cystic fibrosis (CF) is a chronic, progressive, and frequently fatal genetic (inherited) disease of the bodys mucus glands. CF primarily affects the respiratory and digestive systems in children and young adults. The sweat glands and the reproductive system are also usually involved. On the average, individuals with CF have a lifespan of approximately 30 years.
CF-like disease has been known for over two centuries. The name CF of the pancreas, was first applied to the disease in 1938."
Hugest pet peeve is when people a...
Source: Cystic Fibrosis Teenagers and Young People Forum - January 13, 2015 Category: Respiratory Medicine Authors: Enzo2311 Tags: Teenagers and Young People Source Type: forums
Sweat Test after CFTR Test Negative
I am in my mid-forties and have problems with abdominal pain since I was a teenager. I have just been diagnosed with chronic pancreatitis. I had a genetic CFTR sequencing done with deletions/duplications via aCGH this past summer. The only variations that showed up in the tests were the following common variants.
v470m heterozygous
p1290p heterozygous
t854t heterozygous
g1463g heterozygous
I am going to meet with the gastroenterologist next week and I was wondering if it is appropriate to ask for a chloride sweat test before ruling out cystic fibrosis as a cause.
They have ruled out other causes such as alcohol, ga...
Source: Cystic Fibrosis DNA and Mutations Forum - January 2, 2015 Category: Respiratory Medicine Authors: mkpr13 Tags: DNA and Mutations Source Type: forums
Hello, my name is pancreas!
Forum: Welcome lounge
Posted By: pancreas
Post Time: 29-12-2014 at 14:33 (Source: The Student Room)
Source: The Student Room - December 29, 2014 Category: Universities & Medical Training Source Type: forums
CF Limbo-Update on immunodeficiency
My 11 year old son has been in limbo for 5 years now. I've posted here before but I have new information.
Stomach pain started at age 7. Chronic sinusitis and bronchitis. Cultured stap and h flu so far. PI diagnosed at age 8 via pancreatic stim test. Enzymes treated for 8 months with improvement until age 8 when acute event of partial SBO and acute pancreatitis landing him in hospital for one month.
He is treated at Boston Children's hospital via the CF center. Conflicting opinions so enzymes were removed.
Currently he is 9th percentile for height with decent BMI.
DNA sequencing done 5 years ago finding 2 copies of M47...
Source: Cystic Fibrosis Newly Diagnosed Forum - December 19, 2014 Category: Respiratory Medicine Authors: Julie7 Tags: Newly Diagnosed Source Type: forums
DNA results
Well my daughter had the fecal elase (not sure on spelling, sorry) testing done, doctor at CF clinic said it came back fine, no loss of pancreatic function, so relieved!! She also had blood drawn for the Ambry full screen. We waited a little over a month till the doctor called with results. He said given her negative sweat tests and only the one known disease causing mutation he is considering her just a carrier. I was so relieved with this news I didn't think to ask what the actual results were! I called the CF clinic asking if they could fax the results of both tests to me & the receptionist stated she would have to ...
Source: Cystic Fibrosis DNA and Mutations Forum - December 11, 2014 Category: Respiratory Medicine Authors: Makmomma2 Tags: DNA and Mutations Source Type: forums
two copies of m470v (not one but two copies)
Hello, does anyone happen to have this mutation of two m470v. My 5 yr old was diagnosed at 3 for cf even though this mutation isn't suppose to be disease causing..
Famous words...I'm really tired of hearing that. Josiah my cfer has had pneumonia over a dozen times before age 3, 4 sinus surgeries, 2 picc lines hospitalitized 5 times last year, twice this year exacerbations every year �� we are now waiting for Ambry results, and as crazy as this sounds I really hope they find something. He's passed two sweat test, and he is pancreatic insufficient. He's on all the typical cf meds and treatment regiment. I ...
Source: Cystic Fibrosis DNA and Mutations Forum - December 3, 2014 Category: Respiratory Medicine Authors: Shellee Tags: DNA and Mutations Source Type: forums
Intermittent gastrointestinal non-specific symptoms may also precede a pancreatic cancer diagnosis.
(Source: BMJ Comments)
Source: BMJ Comments - November 21, 2014 Category: Journals (General) Source Type: forums
Homozygous for D508, PI but...
When I hit my early 20's, I stopped having so much trouble keeping weight on! Now at 43, I havent taken any enzymes in two decades and constantly have to watch my diet and exercise every day to keep my weight from going up too high. All tests show my pancreas is kaput. My doc thinks I've colonized special bacteria to digest for me. Has this happened to anyone else?
btw, no GI pain, normal stool, etc. You would never know I had such GI difficulty as a child and teen. (Source: Cystic Fibrosis DNA and Mutations Forum)
Source: Cystic Fibrosis DNA and Mutations Forum - October 31, 2014 Category: Respiratory Medicine Authors: imported_Momto2 Tags: DNA and Mutations Source Type: forums
F508 and M265R
Looking for any others with M265R gene mutation it is not in the database. I am 33 and just diagnosed this year as atypical CF I have had a lot of problems with my pancreas. I don't have a clue what may develop later in life I do have extra mucus and some problems with sinuses and bronchitis in my life. (Source: Cystic Fibrosis DNA and Mutations Forum)
Source: Cystic Fibrosis DNA and Mutations Forum - September 22, 2014 Category: Respiratory Medicine Authors: mommof2b1 Tags: DNA and Mutations Source Type: forums
How to know Creon is helping
Hi,
I'm new to the board. My doctor suspects pancreatic insufficiency and I'm trying samples of Creon 36,000. So far I've been trying them two weeks and having mixed results.
Some days it feels like my energy is better and I'm making myself eat more fat and calories. However, somedays the constipation and energy is bad. I used to have frequent loose stools, but they stopped being bad after taking antibiotics earlier this year. Now I'm more constipated. But if I eat a lot of fat, the stools will be loose. I have a few questions that I would love to hear thoughts on:
How will I know if Creon is working?
Does the gas/bloat...
Source: Cystic Fibrosis Nutrition Forum - August 10, 2014 Category: Nutrition Authors: Chrono34 Tags: Nutrition Source Type: forums
Headaches and Muscle Cramps
Many CF warriors experience chronic headaches. I have not yet heard from any doctors a clear and reasonable explanation as to why we have the headaches. My suspicion is that CF is not directly the cause of the headaches, but all the stuff we do and go through as a result of CF can point to several culprits. All I can contribute to this issue is my own experience.
I have gone through periods of time with continuous headaches (if I dont medicate the headache) and periods of time with absolutely no headaches. By the process of elimination, I have come to some conclusions.
Due to CF causing a rapid depletion of vit...
Source: Cystic Fibrosis Alternative Medicine Forum - May 27, 2014 Category: Respiratory Medicine Authors: Angelo Tags: Alternative Medicine Source Type: forums
First Time Post
Hi! I have a 14 year old daughter who just was recently diagnosed with CF...well CRMS a few months ago and now after a hospitalization 3 weeks ago with a mucus plug and partially collapsed lung they have changed the diagnosis to CF. Her genome is M470V and r75q with a 7t/5t variance. She has a borderline sweat test. We are told this is a mild CF. Her lung functions is 75% and she is pancreatic insufficient. This is the first time I have done a forum. I woke up this morning angry, scared, and feeling very alone. My mom suggested I should join a group, so here I am. I am confused by all this genome stuff and just need some s...
Source: Cystic Fibrosis CFTR Modulation and Gene Therapy Forum - October 7, 2013 Category: Respiratory Medicine Authors: pootersmom14 Tags: CFTR Modulation and Gene Therapy Talk Source Type: forums
