pancreatic enzymes
If a child ( 2 years old), is given his enzymes prior to a meal and refuses to eat what are the possible consequences ? If antibiotics are given preventively,should it be given three times daily or if once a day is just as good? Where can I get recent information on the effects of clapping twice a day? Many thanks for your answers. Dr. Linda Talbot
CF testing
I am a 29 year old female who has been struggling with severe weight loss, elevated liver enzymes, bowel issues, etc. Never had any issues with lungs, but due to unexplained GI symptoms and improvement with how I am feeling on pancreatic enzymes, mild CF has been brought up to be tested for. I had the sweat test done and values were only 21, but they only collected 15 uL of sweat and were concerned test needed repeated. My question is, does the test need repeated so that a more sufficient amount of sweat can be collected? Thank you.
Abdominal pains/mesenteric lymphadenitis?
Dear members of the team, I have a girl (nine years old) diagnosed at the age of 9 months with cystic fibrosis. My daughter has a mild pulmonary disease and pancreatic insufficiency. She receives a "standard" treatment for cystic fibrosis (mucolytic agents, pancreatic enzymes, vitamins and antibiotics when needed). In the last week my daughter complained of abdominal pains, especially in the right lower abdomen region. She had no fever, nausea, vomiting, diarrhea or respiratory infection in the last month. There were two ultrasounds performed and my doughter was consulted by three pediatricians and surgeons. Ultrasound showed that liver, pancreas, gallbladder, kidney, appendix were normal. There were found just few enlarged lymphnodes on the mesenter. Coprological examination and Giardia antigen - negative. Other investigations were not performed. Doctors established the diagosis of mesenteric lymphadenitis and they prescribed only a symptomatic treatment (Trimebutine maleate, Drotaverinum, Ibuprofen). But these medications are not helpful. My daughter still has abdominal pain, especially in the evening and during the night. Because I am not confident that the correct diagnosis was established, I would like to ask you what other investigation I could do in order to establish with certainty the diagnosis. If the diagnosis will be confirmed, I would like to ask if this prescribed symptomatic treatment is correct and sufficient. As I said, after a week my daughter still has strong abdominal pains. May antibiotics be helpful in this case? Thank you.
Recommend medicine appetite for my grandson with CF and no appetite Thanks
Petition for Help
In Bulgaria we have a laboratory to measure the levels of fat-soluble vitamins! What to do?
My daughter has just had Q493 identified as her second mutation. (She also has D508) Can you tell me anything about Q493 as it seems fairly rare?
Genotype in CF
My two grandsons (one 18 months, the other 4 years) have CF with genotype F508del (egzon 10) and S466X (egzon 10) in CFTR gen. Can you tell me to which class of mutation belongs S466X and what are the prognosis for the children with this genotype.
genetics question
My daughter was found at age three (she is now nine years old) to have the mutations F508 and 711 3a G. At time she has not experienced any significant lung involvement ( a few episodes of bronchitis) and she is pancreatic sufficient. I would like to ask what is the phenotype and the relative progress of these children with these mutations? Is this atypical CF? Is there any information on this second mutation? Thank you
Meine Tochter mit CF ist fast 16 Monate alt. In den USA benutzt sie die Pari ProNeb Ultra II um ihre Inhalationen zu machen (hypertonic saline und Pulmozyme). Wir sind jetzt in Deutschland und moechten ein aehnliches Geraet kaufen. Wir wissen aber nicht welches am besten ist, Pari Boy SX oder Pari Junior Boy S. Ist das Pari Junior Boy S stark genug, fuer was eine CF Patientin braucht? Pari Boy SX sagt, dass es nicht fuer Kinder unter sechs geeignet ist. Danke! Sarah Peris
Operationen mit CF
Hallo, ich frage jetzt nun zum Zweiten mal, weil es langsam dringlicher wird. Ich bin 19 und habe CF. Ich möchte meine Brust chirurgisch, also mit Implantaten, aufbauen lassen, und daher die Frage: Was muss ich dabei hinsichtlich der CF beachten, mit Ausnahme der Anästhesie. Danke schön und Viele Grüße
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