Unclear situation with cf diagnostic

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Aboveallislove

Super Moderator
Usually a diagnosis of CF results in the doctor prescribing enzymes for stomach pain. I believe they can do a fecal elasticity test, but am not familiar with that. But if she has CF and stomach pains, I don't know that they do other tests. Maybe others can help. Our son's mutations are ones that they always give enzymes for, but I know not everyone needs enzymes, but I would think the stomach pain indicates she needs them.
 
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EvitaZv

New member
I know i am bad mother i was not find information earlyer. I have also son 10 years old. He also had big coughing problems till his 8 years. He also has chronic rhinitis but very, very little. But he had big problems after big coughing problems with his stoma. He had 2 endoscopies - both showed gastropatia, non-active duodenit. Now he has not any pains more. But he has temperature every day (our doctor send us to imunology specialist - our visit is in august). He also has broncho obstruction on every x-ray he did - even 1 month ago when i went with him to hospital with high temperature. But common blood tests was normal and he does not cough last 2 years. But after this new information i took and look sweat tests for him (in hospital did him also with sister because he had bronchitis at this moment when sister gave sweat test) - he also has 75 and 64 after 1 week. His del 508 also was negative. I am so confused right now. Oh, i remember - he told me - he had some blood when last time go to toilet (i thought it is hemoroide and told him to look what will be another time). Now i ask him - he told me - he did not go to toilet since that time - it was on tuesday. He is big and i am not controling his going to toilet. But now i am starting worrying - maybe i should pay attention to his going to toilet? Can it be - 2 children with cf???
 
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EvitaZv

New member
I know i am bad mother i was not find information earlyer. I have also son 10 years old. He also had big coughing problems till his 8 years. He also has chronic rhinitis but very, very little. But he had big problems after big coughing problems with his stoma. He had 2 endoscopies - both showed gastropatia, non-active duodenit. Now he has not any pains more. But he has temperature every day (our doctor send us to imunology specialist - our visit is in august). He also has broncho obstruction on every x-ray he did - even 1 month ago when i went with him to hospital with high temperature. But common blood tests was normal and he does not cough last 2 years. But after this new information i took and look sweat tests for him (in hospital did him also with sister because he had bronchitis at this moment when sister gave sweat test) - he also has 75 and 64 after 1 week. His del 508 also was negative. I am so confused right now. Oh, i remember - he told me - he had some blood when last time go to toilet (i thought it is hemoroide and told him to look what will be another time). Now i ask him - he told me - he did not go to toilet since that time - it was on tuesday. He is big and i am not controling his going to toilet. But now i am starting worrying - maybe i should pay attention to his going to toilet? Can it be - 2 children with cf???
 
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EvitaZv

New member
I know - from side it can listen like fantastic (that anyone paid attention to their sweat tests but it is true - after negative del 508 everybody became calm) - but please believe me - every word i say is true. I am so bad feeling right now. <img src="i/expressions/face-icon-small-sad.gif" border="0">
 
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Aboveallislove

Super Moderator
You are NOT a bad mother. You are trusting your doctors and they may just not know enough information. Cystic Fibriosis is not common there and you have trusted your doctors, so how would you know. You are asking now and trying to find the best answers. Do not feel bad. Take the information on your children's sweat test results and the information about the sweat test results I gave you to the CF doctor and try to get in as soon as you can for both your children. And if they cannot treat for cystic fibrosis, then try to go to another country.

If your children have the same father and both of you have a CF gene, there is a 25% chance for each one to have Cystic Fibrosis.

I am so sorry for the fear you must be feeling right now and will say prayers for you.
 
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Aboveallislove

Super Moderator
You are NOT a bad mother. You are trusting your doctors and they may just not know enough information. Cystic Fibriosis is not common there and you have trusted your doctors, so how would you know. You are asking now and trying to find the best answers. Do not feel bad. Take the information on your children's sweat test results and the information about the sweat test results I gave you to the CF doctor and try to get in as soon as you can for both your children. And if they cannot treat for cystic fibrosis, then try to go to another country.

If your children have the same father and both of you have a CF gene, there is a 25% chance for each one to have Cystic Fibrosis.

I am so sorry for the fear you must be feeling right now and will say prayers for you.
 
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EvitaZv

New member
Aboveallislove, thank you very much for talking to me. I am so scared right now. Yes, both children have one father.
 
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EvitaZv

New member
Aboveallislove, thank you very much for talking to me. I am so scared right now. Yes, both children have one father.
 
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Aboveallislove

Super Moderator
I know how scared you are (we have all been there and it is so hard, but you as a mom can do this for your children.) And if they do have cystic fibrosis and not d508, it could be one of the milder mutations. The most important thing now is to get them good care. I would start trying to find a very good CF clinic that you can travel to if the one in your country you do not think can help. Maybe start a new post asking if there are any people being treated in the countries closest to you (use that as the heading: "Is anyone being treated for CF in " and then list the countries you think are closest and explain that you are trying to find a good doctor, if you do not think the doctor at your CF clinic will be able to help.
 
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JENNYC

New member
I totally agree with Aboveallislove! You are NOT a bad mother, you are a very good mother!! You are trying very hard to find a way to help your child. I was in your shoes for 2 years. I too trusted my doctors, who were not interested in finding what was wrong with my daughter. I think that is a wonderful idea about posting another thread. I just had to chime in and let you know that you are here searching for help and answers...you are a GOOD mother <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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Aboveallislove

Super Moderator
Another thought on re-reading. People with CF need extra salt and can get overheated and dehydrated easily in hot weather. Maybe try using extra salt on foods.
 
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EvitaZv

New member
Thank you for everybody for answers, advices and talking to me. I will call our doctor today (we have a morning right now).
 
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EvitaZv

New member
I talked to our doctore and we are going to hospital on the monday. Thank you all once again for helping me.
 
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EvitaZv

New member
Hi! It is so interesting. Today i had 3 long discussions with our doctor. She told that we have another equipment for sweat tests and thats the reason our results is borderline. I said her if we can do those tests like all the world. She said no we have only this equipment. After that i was reading and reading and searching and searching any information is it true and what is this equipment. And i find! We did sweat conductivity test and - yes - our results is borderline. But i find an information that cf foundation recommends after conductivity test make old chlore concentration sweat test because this new one is only like screening test. But she told me our country has only this equipment. Do you know something about this methode?
 
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EvitaZv

New member
Hi! It is so interesting. Today i had 3 long discussions with our doctor. She told that we have another equipment for sweat tests and thats the reason our results is borderline. I said her if we can do those tests like all the world. She said no we have only this equipment. After that i was reading and reading and searching and searching any information is it true and what is this equipment. And i find! We did sweat conductivity test and - yes - our results is borderline. But i find an information that cf foundation recommends after conductivity test make old chlore concentration sweat test because this new one is only like screening test. But she told me our country has only this equipment. Do you know something about this methode?
 
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Aboveallislove

Super Moderator
I do not know about that test but if they cannot do the other test it is even more important to have all of the mutations checked and not just ten, if the ten do not show the cf gene. Maybe post a new to see if anyone in Europe has down full gene sequencing and where and maybe they can ship you kids blood there.
 
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