Topics

Headache
My daughter is three years old and has CF. I have a question: she frequently says she has a headache or that her legs hurt. I asked our doctor but did not get an answer. Is it possible that she does indeed have a headache and what can be the cause? Many thanks for the answer.
28.02.2012
CF possible?
My son is now three years old. Since infancy and still today, he has been having problems with recurring bronchitis and croup attacks. Suspicions have ranged from asthma to allergies etc., but so far nobody has been able to really help us. Additionally, he has been having constant diarrhea since he was one year old whose cause could not be determined. Therefore he is much smaller than his peers and was also underweight until recently. He has been on a high-calorie diet for six months and has gained 1.5 kg. Stool tests showed too many excreted fats. Now we are wondering whether it could possibly be CF. However, is that not tested during neonatal screening?
28.02.2012
Question #1: Is it PTC 124? / Question #2: Amendment to my question
[Note from ECORN-CF: This combines two questions the questioner asked consecutively.] Dear expert team, I have three important questions: 1) My doctor, who unfortunately is not there anymore now, had me examined in order to find out which mutation I have. I do not remember the name now; she only said that I had the mutation that most inhabitants of Israel have and that there is a drug against it. Now the question is who can one contact or where can one get information on how far one has progressed? I am roughly 22 years old and my FEV1 is at roughly 80%. Do you have an address or phone number? [Comment from ECORN-CF: the following information was added from the questioner as he asked the second time]: My mutations are: in exon 5 the splicing mutation 711+1G>T and in exon 19 the stop mutation p.R1162X. 2) I run for 45 minutes every other day and inhale Mukoclear® 6% (hypertonic saline solution) 2-3 times a day as well as Sultanol® (salbutamol) once a day. I am doing pretty well, I cough once in a while during the day, mostly before inhalation. I also have physiotherapy once a week. Now I would like to know whether all this is enough to keep the lungs in shape or whether it is not sufficient? 3) Which inhalation equipment is most effective for the lungs? Many, many thanks.
28.02.2012
mutation
Hello, my daughter is five months old and has cystic fibrosis. She carries the mutation delta F508 and we have just learned that the other mutation, is rare: Q1280X. Could you give me information on this mutation and on the association of these two mutations? on the manifestations of the disease they can cause, even if a case is not the other ... thank you in advance.
27.02.2012
Pulmonary arterial hypertension
Hello, What are the consequences of pulmonary arterial hypertension (PAH) in patients with cystic fibrosis? When does it occur? Is there an increased risk of mortality? Otherwise, are sports to be banned?
27.02.2012
Malaria prophylaxis
Dear expert team! In autumn 2012 I would like to travel to Namibia. While planning the trip I came across the hint several times that preventive health precautions have to be taken necessarily with regards to malaria prophylaxis, especially when travelling to the North (e.g. Etosha pan). I have been travelling a lot and also far away but up to date a malaria prophylaxis has not been necessary for the travel destination. My questions: How does malaria prophylaxis agree with the other CF specific medication, especially with antibiotics? Which prophylaxis is recommended? Which rescue medication should be part of the travel luggage? Or should I better find another travel destination? Many thanks!
27.02.2012
Hearing loss with Tobi® inhalation
Dear expert team, about a week ago, I (26 years old, CF) had acute hearing loss. During its treatment phase, several hearing tests were done. My hearing loss was reversible, but it was detected in this context that I suffer from hearing loss in the high-frequency range. I have been inhaling once a day with Tobi® (tobramycin) for many years (perhaps even since its approval), though I have only had one i.v. therapy with tobramycin and gentamicin so far (6 years ago). Through my job as a pharmacist, I immediately thought of Tobi®. Also, according to the product specifications for Tobi®, hearing loss can be one potential side effect of inhalation, initially in the high-frequency range. There is hardly any information on the issue of hearing loss with Tobi® inhalation. However, I would not like to either become deaf over time or get Pseudomonas. I would now like to have my tobramycin level checked after an inhalation. When is the peak level reached, and is there a certain tobramycin level at all that has been proven to cause hearing loss with daily inhalation? Kind regards and many thanks for your effort.
27.02.2012
Cystic fibrosis and estrogen
My doctor suggested I take an oral contraceptive containing estrogen and progesterone to treat a rebel acne. Is it contraindicated to take estrogen and progesterone whith cystic fibrosis? Is there an increased risk of diabetes? Thank you
27.02.2012
distal intestinal obstruction
My mother has had a diarrhea and subsequently a sub occlusion. She is now very tired. Is it a frequent event ?
27.02.2012
CF care in Guadeloupe
Hello, We leave next summer for Guadeloupe for three years. Do you have advices on the care pathway that we will have to prepare ? Physicians, pulmonologists, physiotherapist
27.02.2012
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