Hy! please sorry for my english but I come from Croatia and I just dont know who to ask. I realy hope you will understand me.I have a son ,6 weeks old. First day of his life he had surgery because his colon was smoll and the poop was stuck in it. Doctors clean his colon but after 4 days when they give him his first meal poop stuck again. Then he had a second surgery and now he has a colostomy bag. Doctors dont know for how long he will have it because his colon is still smol and it is not responding to enything. We are waiting for results for morbus hirschprung too. Sweet test was abnormal 4 times so they diagnosed CF . Genetic tests were ok ,but they tested only a few mutations. I dont know where we can do genetic test for oll mutations. I am so confused... My baby is home now. I am looking at him and I am crying because I love him so much but I dont know how to help him... I am feeling like I am all alone in this world...
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- Thread starter una
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Hy! please sorry for my english but I come from Croatia and I just dont know who to ask. I realy hope you will understand me.I have a son ,6 weeks old. First day of his life he had surgery because his colon was smoll and the poop was stuck in it. Doctors clean his colon but after 4 days when they give him his first meal poop stuck again. Then he had a second surgery and now he has a colostomy bag. Doctors dont know for how long he will have it because his colon is still smol and it is not responding to enything. We are waiting for results for morbus hirschprung too. Sweet test was abnormal 4 times so they diagnosed CF . Genetic tests were ok ,but they tested only a few mutations. I dont know where we can do genetic test for oll mutations. I am so confused... My baby is home now. I am looking at him and I am crying because I love him so much but I dont know how to help him... I am feeling like I am all alone in this world...
Since U are from Croatia I am not sure how I can help. We have 2 labs that do CF testing here in the USA. The one that does the widest screen of CF mutations is Quest. Although I am sure U can get testing done thru them (depending on legal issues with sending blood thru the mail etc), they will need to be paid & it is expensive. Does your country have national health insurance etc? Do you happen to know for sure if the testing was done in your country? Even tho your english is not great, U communicate your questions well. I hope U can read the responses as easily!
Since U are from Croatia I am not sure how I can help. We have 2 labs that do CF testing here in the USA. The one that does the widest screen of CF mutations is Quest. Although I am sure U can get testing done thru them (depending on legal issues with sending blood thru the mail etc), they will need to be paid & it is expensive. Does your country have national health insurance etc? Do you happen to know for sure if the testing was done in your country? Even tho your english is not great, U communicate your questions well. I hope U can read the responses as easily!
my little brother had the same problem when he was born. He had a bag on his side for three months until the intestines healed from the surgery. they had to remove 12 inches of intestine from him. He was put on digestive enzymes and they were fed to him in applesauce so the he could get nourishment from his food. Remember that your baby needs a little bit extra of salt in its milk...the baby has CF and looses salt...you are not alone.....there are lots of people that have children with Cystic Fibrois......
Much Love and Speedy Recovery to you Child
johnna
Much Love and Speedy Recovery to you Child
johnna
my little brother had the same problem when he was born. He had a bag on his side for three months until the intestines healed from the surgery. they had to remove 12 inches of intestine from him. He was put on digestive enzymes and they were fed to him in applesauce so the he could get nourishment from his food. Remember that your baby needs a little bit extra of salt in its milk...the baby has CF and looses salt...you are not alone.....there are lots of people that have children with Cystic Fibrois......
Much Love and Speedy Recovery to you Child
johnna
Much Love and Speedy Recovery to you Child
johnna
I am sure that testing was done in Croatia ,they discovered that one mutation is 508 but they dont know what is the other one. I dont have money but I will try to get credit in bank. I am warried about hirschprung results-do you know enybody who has it bouth? And his lungs are ok now but I am asking myself-for how long... Where is Quest? I dont have problem with reading english ,just with writing...
I am sure that testing was done in Croatia ,they discovered that one mutation is 508 but they dont know what is the other one. I dont have money but I will try to get credit in bank. I am warried about hirschprung results-do you know enybody who has it bouth? And his lungs are ok now but I am asking myself-for how long... Where is Quest? I dont have problem with reading english ,just with writing...
I had never heard of Hirshprung disease so I found this link on the internet that was very informative:
<a target=new class=ftalternatingbarlinklarge href="http://digestive.niddk.nih.gov/ddiseases/pubs/hirschsprungs_ez/#1
">http://digestive.niddk.nih.gov/ddiseases/pubs/hirschsprungs_ez/#1
</a>I am hoping that your baby only has one disease, or neither disease would be the best situation.
I also wonder if the 2 diseases can have enough similiar symptoms that they are wrong in thinking he may have 2 different diseases.
Please keep us updated on how the test goes.
As for knowing the other mutation, if you know <b>for sure</b> that your baby does have CF, I wonder if knowing the other mutation is really all that important?? There is much debate that mutations predict the severity of CF and I can't say that I agree with this theory. My reasoning is, how can 2 siblings with the same mutations have totally different severities of CF? I could be wrong, it's just my opinion.....you may ask your doctor how important/necessary it is to know the 2nd mutation. I just hate for you to spend a lot of money on testing if you already know for sure that your child has CF.
Hope
<a target=new class=ftalternatingbarlinklarge href="http://digestive.niddk.nih.gov/ddiseases/pubs/hirschsprungs_ez/#1
">http://digestive.niddk.nih.gov/ddiseases/pubs/hirschsprungs_ez/#1
</a>I am hoping that your baby only has one disease, or neither disease would be the best situation.
I also wonder if the 2 diseases can have enough similiar symptoms that they are wrong in thinking he may have 2 different diseases.
Please keep us updated on how the test goes.
As for knowing the other mutation, if you know <b>for sure</b> that your baby does have CF, I wonder if knowing the other mutation is really all that important?? There is much debate that mutations predict the severity of CF and I can't say that I agree with this theory. My reasoning is, how can 2 siblings with the same mutations have totally different severities of CF? I could be wrong, it's just my opinion.....you may ask your doctor how important/necessary it is to know the 2nd mutation. I just hate for you to spend a lot of money on testing if you already know for sure that your child has CF.
Hope
I had never heard of Hirshprung disease so I found this link on the internet that was very informative:
<a target=new class=ftalternatingbarlinklarge href="http://digestive.niddk.nih.gov/ddiseases/pubs/hirschsprungs_ez/#1
">http://digestive.niddk.nih.gov/ddiseases/pubs/hirschsprungs_ez/#1
</a>I am hoping that your baby only has one disease, or neither disease would be the best situation.
I also wonder if the 2 diseases can have enough similiar symptoms that they are wrong in thinking he may have 2 different diseases.
Please keep us updated on how the test goes.
As for knowing the other mutation, if you know <b>for sure</b> that your baby does have CF, I wonder if knowing the other mutation is really all that important?? There is much debate that mutations predict the severity of CF and I can't say that I agree with this theory. My reasoning is, how can 2 siblings with the same mutations have totally different severities of CF? I could be wrong, it's just my opinion.....you may ask your doctor how important/necessary it is to know the 2nd mutation. I just hate for you to spend a lot of money on testing if you already know for sure that your child has CF.
Hope
<a target=new class=ftalternatingbarlinklarge href="http://digestive.niddk.nih.gov/ddiseases/pubs/hirschsprungs_ez/#1
">http://digestive.niddk.nih.gov/ddiseases/pubs/hirschsprungs_ez/#1
</a>I am hoping that your baby only has one disease, or neither disease would be the best situation.
I also wonder if the 2 diseases can have enough similiar symptoms that they are wrong in thinking he may have 2 different diseases.
Please keep us updated on how the test goes.
As for knowing the other mutation, if you know <b>for sure</b> that your baby does have CF, I wonder if knowing the other mutation is really all that important?? There is much debate that mutations predict the severity of CF and I can't say that I agree with this theory. My reasoning is, how can 2 siblings with the same mutations have totally different severities of CF? I could be wrong, it's just my opinion.....you may ask your doctor how important/necessary it is to know the 2nd mutation. I just hate for you to spend a lot of money on testing if you already know for sure that your child has CF.
Hope
I think there are many people with CF who only know the name of one of their mutations...actually there are a lot of people who don't know the names of either of their mutations since they were diagnosed with CF looooong before genetic testing was even possible. personally, I would not be too concerned with figuring out his mutation since he has had 4 postive sweat tests and he was born with what we call Meconium Illieus (which almost always means CF) you should concentrate more on getting his treatments (enzymes, vitamins, nebulized therapy's, etc) figured out and learn as much as you can about the disease so you can take the best care of him as possible. I know this is hard, but try to enjoy your new little boy. He has a great chance of living a wonderful life.
I think there are many people with CF who only know the name of one of their mutations...actually there are a lot of people who don't know the names of either of their mutations since they were diagnosed with CF looooong before genetic testing was even possible. personally, I would not be too concerned with figuring out his mutation since he has had 4 postive sweat tests and he was born with what we call Meconium Illieus (which almost always means CF) you should concentrate more on getting his treatments (enzymes, vitamins, nebulized therapy's, etc) figured out and learn as much as you can about the disease so you can take the best care of him as possible. I know this is hard, but try to enjoy your new little boy. He has a great chance of living a wonderful life.
una,
Your writing is just fine! So don't worry about that.
I have CF and was diagnosed when I was 1 year old. I don't even know what my mutation is, I'm not sure I ever had it done.
So don't worry, you will figure everything out. Your baby can grow to live a happy, healthy life.
Could you contact the CF Foundation and ask them for advice? You can find their website, and contact someone there to help you.
Perhaps they could offer names of doctors in your country that can help you. There are definately many resources available for you and your baby.
Best to you,
Christian
Your writing is just fine! So don't worry about that.
I have CF and was diagnosed when I was 1 year old. I don't even know what my mutation is, I'm not sure I ever had it done.
So don't worry, you will figure everything out. Your baby can grow to live a happy, healthy life.
Could you contact the CF Foundation and ask them for advice? You can find their website, and contact someone there to help you.
Perhaps they could offer names of doctors in your country that can help you. There are definately many resources available for you and your baby.
Best to you,
Christian
una,
Your writing is just fine! So don't worry about that.
I have CF and was diagnosed when I was 1 year old. I don't even know what my mutation is, I'm not sure I ever had it done.
So don't worry, you will figure everything out. Your baby can grow to live a happy, healthy life.
Could you contact the CF Foundation and ask them for advice? You can find their website, and contact someone there to help you.
Perhaps they could offer names of doctors in your country that can help you. There are definately many resources available for you and your baby.
Best to you,
Christian
Your writing is just fine! So don't worry about that.
I have CF and was diagnosed when I was 1 year old. I don't even know what my mutation is, I'm not sure I ever had it done.
So don't worry, you will figure everything out. Your baby can grow to live a happy, healthy life.
Could you contact the CF Foundation and ask them for advice? You can find their website, and contact someone there to help you.
Perhaps they could offer names of doctors in your country that can help you. There are definately many resources available for you and your baby.
Best to you,
Christian
i agree that there wouldnt be much point in trying to test for the other gene seeing as your son has had 4 abnormal sweat tests and 1 gene is already found. i dont know if there is a cf association in croatia but this website might help you. <a target=new class=ftalternatingbarlinklarge href="http://www.cfww.org/cfe.index.asp">http://www.cfww.org/cfe.index.asp</a> email them and ask them if there is any help for you.
i agree that there wouldnt be much point in trying to test for the other gene seeing as your son has had 4 abnormal sweat tests and 1 gene is already found. i dont know if there is a cf association in croatia but this website might help you. <a target=new class=ftalternatingbarlinklarge href="http://www.cfww.org/cfe.index.asp">http://www.cfww.org/cfe.index.asp</a> email them and ask them if there is any help for you.
Thank you all for your help and answers. We are going to surgeon next wednesday and I will know the results of biopsy. Maybe it is not so important because surgeon sad that the third surgery will be the pull-throught surgery. I am warried about that because all large and some part of the small intestine are effected... I already had contact with our specialist for CF. Only therapy my son needs now-because his lungs are ok- are vitamin A, D ,E and Fe. He is eating medical food named alfare. There is no CF association in Croatia or any other country of ex Yugoslavia. I am sorry for that and I will try to do something about it. It is great to see that my son can have happy life despite CF. I will let you know what is new. And thank you once again...
Thank you all for your help and answers. We are going to surgeon next wednesday and I will know the results of biopsy. Maybe it is not so important because surgeon sad that the third surgery will be the pull-throught surgery. I am warried about that because all large and some part of the small intestine are effected... I already had contact with our specialist for CF. Only therapy my son needs now-because his lungs are ok- are vitamin A, D ,E and Fe. He is eating medical food named alfare. There is no CF association in Croatia or any other country of ex Yugoslavia. I am sorry for that and I will try to do something about it. It is great to see that my son can have happy life despite CF. I will let you know what is new. And thank you once again...