<span>At first I want to apologise for my english.<span>I have a daughter. She was born at January of 2007.<span>All the time she had vomiting after eating about some 6-10 times a day till her 10 months. From 6th day till her 7th month she hadchronic conjunctivitis. On 3rd week she has begin chronicrhinitis till our days (sometimes better, sometimes worse).<span>On 8th month she began tocough. After 2 weeks she had pneumonia (like doctore said - from mycoplasma, but it was not activate at the moment of taken analise, she said that mycoplasma was before that) - she had a course of antibacterial therapy. After hospital she was coughing and anything did not help. Doctor thought it is from allergy (but blood tests for allergy gave negative). After that think it iswhooping cough and gave us another course of antibacterial therapy. Anything did not help.<span>On 11th month she was eating a banana and choked. I shaked her and she spat out clot of blood. In ambulance they did her x-ray but everything was in norma. After that I took her on diet for 6 months - she ate only rice, special baby nutrition without milk and bread without glucose.<span>When she was 1 year old the doctor gave us a diagnose - asthma, but salbutamol, hormonal medicaments did not help.<span>On November of 2008 she was in hospital because she had so severe cough attack till half an hour and vomiting (we have only one department of pediatry pulmonology in country) and she had 3 bronchoscopies. In first they found moraxella. She had antibacterial therapy. Computer tomography showed that any pathology was not.<span>At home she was still coughing. After 2 week she had big temperature again. In hospital was found bronchopneumonia and doctor on duty on sunday started give her antibacterial therapy and after that on tuesday at bronchoscopy they could not take a material for bacterial analise.<span>She had first sweat test - result was 87 mmol/l. After 1,5 week the test result was 64 mmol/l. Was taken blood analise for dna for searching the mutation<span class="c2"><span class="c1">Del F508. It was negative. After 6 monts sweat test result was 69 mmol/l.<span class="c2"><span class="c1">All the time she has temperature 38-38.5 for 6 days every 2 weeks-2months, but often every 1 month. Only on summers (3 months june-august) she does not have temperature. Cough is all the time. Only this summer she has not cough from 15th june. All the x-rays showsbronchial obstruction.We gave another blood test of dna to 10 another mutations, but the results will be only on september. Our only diagnose is asthma.<span class="c2"><span class="c1">I am worrying for my daugther because our doctor said that sweat test is not very high and she does not know is it mucoviscidosis but I see that in another countries is diagnosing mucoviscidosis if there is clinique and positive sweat test.<span class="c2"><span class="c1">Tell me please if I should worry for my dauhter and what can I do else for her.
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Unclear situation with cf diagnostic
- Thread starter EvitaZv
- Start date
Are you doing any type of chest physiotherapy --- cupping hands and "patting" different areas on the chest, back and sides to get the mucus moving? With all the infections and lung obstructions it might be a good idea to have a respiratory therapist show you how to do that. It's amazing how just doing that a couple times a day, every day can help keep the lungs clear.
And our doctor says that it can not be cf if she had temperature off without antibacterial therapy some times. Can it be? And also doctor says if she would have cf she had bad blood analises always - she only sometimes has high leucocitis. BUT she had no high leucocitis when thay found moraxella also!
I am from very small country - we have only one old cf doctore and i can not go to another one. But i am very, very worrying for my daughter! Should i pay attention on her stomache? I know that our family doctore says - it is from her nerves (she has also neurological problems).
E
edan
Guest
Hi Evita. What country are you from? 60 mmol+ is usually cf. can you go to another country for a second opinion?
I am from Latvia - it is near Baltic sea - small country with only less then 2 million population. Well, i guess so i should go to another country because i am reading this information and begin worrying very. I believed our doctors and did not find any more information. I even did not know that more than 60 is positive -anyone told me it. Just said - result is not very high! But now i find in internet that it is high! It is so bad that i was so thrustful and did not find information for myself before!!!
Aboveallislove
Super Moderator
Dear Evita,
I am so sorry. You must be so worried and scared. I do think you need to find another CF doctor or go back with some additional information. A sweat test above 60 mmol+ does usually means cystic fibrosis. This explains the information: http://www.cff.org/AboutCF/Testing/SweatTest/. It sounds like your doctor only tested for one of the CF genes d508--but there are more than 1000.
A cough is good to get out the mucus, but usually mean that another infection is coming. CF does get worse over time, BUT it changes day to day for each person and after antibitoics the person usually does better. Some people with CF have problems with their stomach, others do not. And sometimes it depends on what the person eats.
I would ask you to try to:
1) Get back to doctor and show information on the sweat tests and have her treated for CF. And also have her tested for the other genes to see what CF gene she might have.
2) If doctor says no, then see if you can find another doctor.
3) Read on line as much as possible to know what questions to ask.
God Bless you and your baby.
I am so sorry. You must be so worried and scared. I do think you need to find another CF doctor or go back with some additional information. A sweat test above 60 mmol+ does usually means cystic fibrosis. This explains the information: http://www.cff.org/AboutCF/Testing/SweatTest/. It sounds like your doctor only tested for one of the CF genes d508--but there are more than 1000.
A cough is good to get out the mucus, but usually mean that another infection is coming. CF does get worse over time, BUT it changes day to day for each person and after antibitoics the person usually does better. Some people with CF have problems with their stomach, others do not. And sometimes it depends on what the person eats.
I would ask you to try to:
1) Get back to doctor and show information on the sweat tests and have her treated for CF. And also have her tested for the other genes to see what CF gene she might have.
2) If doctor says no, then see if you can find another doctor.
3) Read on line as much as possible to know what questions to ask.
God Bless you and your baby.
I agree with edan, I think I would travel outside of your country to find another specialest. And if it is CF the coughing is good because that is her only way to get rid of the mucus in her lungs. My daughter only coughs when she is having chest congestion or sinus drainage. If she has neither of those it just means that she is not having a major problem at that moment. I also agree with Ratatosk in that clapping on her back would probably help even if she doesn't have CF just to break up what ever junk is in there. I would also be very concerned about stomach problems and bowel movements. I am not a doctor but I would be concerned that she might have CF. It is very worth getting a specialest to look at her. Good luck to you!!
Aboveallislove, thank you for your answer! <img src="i/expressions/face-icon-small-smile.gif" border="0"> it is so great i can speak to anyone for my situation (in our county is only 20 cf patients and in our forums anyone does not know anything about this illness). Can you please tell me once more what tests i should ask (i am sorry i did not understand clearly)? Our genetic told me she can take only this analise we gave on 12 june for 10 mutations (answers will be on september)
Aboveallislove
Super Moderator
Evita,
It looks like they are allready testing for other mutations, but only 10. It is possible to test for more than the 10 mutations, but your doctor or hospital may not know how. I would ask if anyone (another hospital) can test for more mutations if these tests come back negative. But even if they cannot find the mutation the sweat test results will be enough to know whether she has cystic fibrosis.
Here is a link on "chest percussions": http://www.webmd.com/lung/performing-postural-drainage-and-chest-percussion-for-cystic-fibrosis#. There are 6 pages and it looks like some videos.
It looks like they are allready testing for other mutations, but only 10. It is possible to test for more than the 10 mutations, but your doctor or hospital may not know how. I would ask if anyone (another hospital) can test for more mutations if these tests come back negative. But even if they cannot find the mutation the sweat test results will be enough to know whether she has cystic fibrosis.
Here is a link on "chest percussions": http://www.webmd.com/lung/performing-postural-drainage-and-chest-percussion-for-cystic-fibrosis#. There are 6 pages and it looks like some videos.
Wow, great! Thank you very much for link. <img src="i/expressions/face-icon-small-smile.gif" border="0"> i would study, try and look what will happen. I have once more question about my daughters stomache (yes, it is rare but she has lying at bad at those moments and saying me "mommy, hurts!"). What tests or analises i should ask for my family doctor for this problem?