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elevated aminotransferases
Hello, My son is 16-month-old, we have just undergone routine follow-up tests, which revealed elevated aminotransferases. The doctors say, that it requires just observation, they do not change the therapeutic regimen, but I do worry about it - what does it possibly mean to him? We have to perform additional tests to exclude CMV infection and Toxoplasmosis...
12.05.2011
Camping
We would like to camp with our grand son next August. Could he sleep in a tent - he is 4 years old -, is this not too risky?
12.05.2011
cystic fibrosis and hypothyroidism
Hello, Since the time our daughter has been diagnosed with CF (del F508 del F508), problems with thyroid gland has appeared (it has been lasting for more than 5 years). We check the hormone's levels every 2-3 months according our doctor's suggestion and every time the results are not satisfying, which means they are above the reference range (I should mark that hormone preparation is always given in fasting state, ca 1/2 hour before meal). Every time we visit endocrinologist he increases the dose (now our daughter recives 50 mcg of Letrox every day). The doctor suggested us, that maybe this is our "fault"and the child is not receiving the drug regularly. We do obey the treatment regime and we never missed the dose. In our daughter also anti-thyroid antibodies were assessed and the results are also bad (marginally). The doctor, who is taking care of our daughter, suggested that we should visit another doctor. We did it, another tests were done and this time the dose is increased again. We understand, that the child grows, gains weight and maybe the thyroid gland "is not coping" with this, but nobody can tell us, why this happens. Can cystic fibrosis influence the thyroid gland and is it possible, that the drugs our daughter receives every day somehow disturb the action of iatrogenic hormone? Should any additional tests be done? I am waiting for the answer, best regards.
10.05.2011
the level of serum cortisol and the result of pilocarpine iontophoresis
In my adult child with suspicion of CF the level of serum cortisol at 8.00 a.m. was 570 nmol/l. The day before pilocarpine iontophoresis was done and the result was low - 33 mmol/l. The result of pilocarpine iontophoresis, which was done 3 years ago, was 77 and 6 months ago - 57. Can the level of serum cortisol influence the result of pilocarpine iontophoresis? What does the high level of serum cortisol mean in CF patient? (the level of serum cortisol was assessed for the first time).
10.05.2011
sputum sample
Hello, The physiotherapist of the CF Centre has been unable this morning to obtain some sputa from my 5 months old daughter for microbiological culture. He/she said that her bronchi were not enough infected. I don’t understand. In some CF Centres, each month a sputum sample is obtained from each CF patient, even if they are not “infected”. How physiotherapist can obtain sputum ? What are we looking for with a sputum sample ? Thanks.
10.05.2011
Acapella
Should any other forms of respiratory rehabilitation be done while using Acapella?
09.05.2011
Genetics (2143delT/delF508)
Hello, in my son F508 del and 2143 delT mutations were detected. As far as the first mutation is concerned, one can find some information about it in the internet. The second mutation is not known to me. Please, provide me with any information about this one. I know, that few people have this mutation, even my doctor (with 30-year-experience) in outpatient dept. hasn't seen such case so far. Greetings, looking forward to your answer.
09.05.2011
Splicing mutation
Hello Are they any studies underway for splicing mutations? If yes, what are they? Thank you for your answer.
05.05.2011
Anorexia?
My 14-year-old son has cystic fibrosis. For the last three weeks, after a gastroenteritis, he has been refusing to eat, suffering from recurring stomach aches, and he vomits if forced to eat. His weight is 47 kg for 1.72 m. His doctors consider a psychological factor as the most likely hypothesis (and he is under a child psychiatrist’s care): However, I’m still strongly worried by the stomach aches and the vomiting. Could this have something to do with anorexia? Or something else? Thank you for your help. I am really distraught by him being so skinny and refusing to eat.
05.05.2011
Staphylococcal infection we are treating is chronic?
Thank you for a very useful Q&A! My seven-year-old complains with knee and leg pain and that she suddenly feels she cannot walk. She has CF. We do not listen to carefully, but then, I found this on the web (e-corn-cf.eu): CF-arthropathy 2) Episodic (acute) arthritis Hereby it deals in the first row with a typical so-called “CF-arthritis”. Hereby it deals in general with an acute illness. The joint problems occur asymmetrically and affect small or large joints. The complaints last mostly only for a limited time about 7-14 days. One assumes, that the reactions of the joints are caused by so-called immuno-reactions, which are based on the chronic bacterial inflammation of the lung. For making the diagnosis, only few things can be found. On the x-ray, swelling of the soft tissues or effusions can be seen. In the laboratory, negative results for the rheumatic factors occur, in single cases so-called immuno-complexes (ANCA) can be positive. As therapy, painkillers should be used. Of essential importance is an agressive antibiotic therapy. Question: are we given a clue that the staphylococcal infection we are treating is cronic? are we given a clue that the x-ray and ultrasound from the last yearly check-up really show bacterial infection? might this speed up how and that we treat this?
05.05.2011
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