Worried mummy needing some opinions

LianneL

New member
Hi all,

I really need some opinions regarding by 11.5 month old daughter. Holly was born at 38 weeks after being induced due to the fact that I had pre-eclampsia. She really struggled to get going and having been born at 6lb 6ozs dropped to 5lbs 8 ozs as she wouldn't feed. She always seemed to have a cough but we were told this was normal as their airways have to get used to breathing normal air and it can be quite irritating (Holly is my second child and I didn't experience any of these problems with my son Jack who is now approaching 4). Getting Holly to take milk was always difficult and at 8 weeks she had her first chest infection. After antibiotics she seemed to really pick up for about 3 months. She still coughed but it didn't seem problematic. In the middle of September when Holly was 5 months old she developed croup and this was the start of real problems with her breathing. Basically since then she has had very few days when she has not coughed until she is sick at least once and more often twice. She had pneumonia just before Christmas and has had two further chest infections since then. When she has chest infections she is sick three, four, fives, six times a day (I'm so sick of sick!) and when she doesn't she still coughs until she is sick once a day minimum. About a month ago we started asthma medication. The preventer medication does not seem to be helping at all and she is needed her reliever medication at least twice a day. The reliever medication seems to help a bit but she is chesty all of the time and I can't remember the last time I picked her up and she wasn't rattling. We do not have any problems at all with her digestive system as long as we can get food to stay in!!!

Our GP (we're in the UK) has now referred us to a Paediatrician who we are seeing tomorrow and is recommending that Holly be tested for CF. Given that she doesn't have any digestive symptoms, is there a chance that she could have CF? From your experiences does it sound like it could be CF to you? I think what is throwing me is that I, like most parents, usually have pretty good instincts about my children and this time round every part of me is saying that this could be the problem.

Thank you for your time.

Lianne
 

LianneL

New member
Hi all,

I really need some opinions regarding by 11.5 month old daughter. Holly was born at 38 weeks after being induced due to the fact that I had pre-eclampsia. She really struggled to get going and having been born at 6lb 6ozs dropped to 5lbs 8 ozs as she wouldn't feed. She always seemed to have a cough but we were told this was normal as their airways have to get used to breathing normal air and it can be quite irritating (Holly is my second child and I didn't experience any of these problems with my son Jack who is now approaching 4). Getting Holly to take milk was always difficult and at 8 weeks she had her first chest infection. After antibiotics she seemed to really pick up for about 3 months. She still coughed but it didn't seem problematic. In the middle of September when Holly was 5 months old she developed croup and this was the start of real problems with her breathing. Basically since then she has had very few days when she has not coughed until she is sick at least once and more often twice. She had pneumonia just before Christmas and has had two further chest infections since then. When she has chest infections she is sick three, four, fives, six times a day (I'm so sick of sick!) and when she doesn't she still coughs until she is sick once a day minimum. About a month ago we started asthma medication. The preventer medication does not seem to be helping at all and she is needed her reliever medication at least twice a day. The reliever medication seems to help a bit but she is chesty all of the time and I can't remember the last time I picked her up and she wasn't rattling. We do not have any problems at all with her digestive system as long as we can get food to stay in!!!

Our GP (we're in the UK) has now referred us to a Paediatrician who we are seeing tomorrow and is recommending that Holly be tested for CF. Given that she doesn't have any digestive symptoms, is there a chance that she could have CF? From your experiences does it sound like it could be CF to you? I think what is throwing me is that I, like most parents, usually have pretty good instincts about my children and this time round every part of me is saying that this could be the problem.

Thank you for your time.

Lianne
 

LianneL

New member
Hi all,

I really need some opinions regarding by 11.5 month old daughter. Holly was born at 38 weeks after being induced due to the fact that I had pre-eclampsia. She really struggled to get going and having been born at 6lb 6ozs dropped to 5lbs 8 ozs as she wouldn't feed. She always seemed to have a cough but we were told this was normal as their airways have to get used to breathing normal air and it can be quite irritating (Holly is my second child and I didn't experience any of these problems with my son Jack who is now approaching 4). Getting Holly to take milk was always difficult and at 8 weeks she had her first chest infection. After antibiotics she seemed to really pick up for about 3 months. She still coughed but it didn't seem problematic. In the middle of September when Holly was 5 months old she developed croup and this was the start of real problems with her breathing. Basically since then she has had very few days when she has not coughed until she is sick at least once and more often twice. She had pneumonia just before Christmas and has had two further chest infections since then. When she has chest infections she is sick three, four, fives, six times a day (I'm so sick of sick!) and when she doesn't she still coughs until she is sick once a day minimum. About a month ago we started asthma medication. The preventer medication does not seem to be helping at all and she is needed her reliever medication at least twice a day. The reliever medication seems to help a bit but she is chesty all of the time and I can't remember the last time I picked her up and she wasn't rattling. We do not have any problems at all with her digestive system as long as we can get food to stay in!!!

Our GP (we're in the UK) has now referred us to a Paediatrician who we are seeing tomorrow and is recommending that Holly be tested for CF. Given that she doesn't have any digestive symptoms, is there a chance that she could have CF? From your experiences does it sound like it could be CF to you? I think what is throwing me is that I, like most parents, usually have pretty good instincts about my children and this time round every part of me is saying that this could be the problem.

Thank you for your time.

Lianne
 

NoExcuses

New member
CF varies in its presentation. She could definately have CF without digestive issues.

I would recommend getting a full panel genetic test as soon as possible (sweat tests can to be more inaccurate). Make sure she is testd for all known 1500 CF genes.
 

NoExcuses

New member
CF varies in its presentation. She could definately have CF without digestive issues.

I would recommend getting a full panel genetic test as soon as possible (sweat tests can to be more inaccurate). Make sure she is testd for all known 1500 CF genes.
 

NoExcuses

New member
CF varies in its presentation. She could definately have CF without digestive issues.

I would recommend getting a full panel genetic test as soon as possible (sweat tests can to be more inaccurate). Make sure she is testd for all known 1500 CF genes.
 

Samsmom

New member
First let me say I am sorry for this time of uncertainty for you and second you have come to the right place for support and info. CF can present in many different ways, and not all cfers have digestive problems, some don't have many pulmonary problems. The only way to know for sure is have her tested. Make sure the genetic test is a full panel that tests for all known mutations, not just some. If you have an instinct about your child I say follow it until you get answers. I wish you lots of luck in your search for answers and hope your little one is feeling better soon.<img src="i/expressions/face-icon-small-smile.gif" border="0">
 

Samsmom

New member
First let me say I am sorry for this time of uncertainty for you and second you have come to the right place for support and info. CF can present in many different ways, and not all cfers have digestive problems, some don't have many pulmonary problems. The only way to know for sure is have her tested. Make sure the genetic test is a full panel that tests for all known mutations, not just some. If you have an instinct about your child I say follow it until you get answers. I wish you lots of luck in your search for answers and hope your little one is feeling better soon.<img src="i/expressions/face-icon-small-smile.gif" border="0">
 

Samsmom

New member
First let me say I am sorry for this time of uncertainty for you and second you have come to the right place for support and info. CF can present in many different ways, and not all cfers have digestive problems, some don't have many pulmonary problems. The only way to know for sure is have her tested. Make sure the genetic test is a full panel that tests for all known mutations, not just some. If you have an instinct about your child I say follow it until you get answers. I wish you lots of luck in your search for answers and hope your little one is feeling better soon.<img src="i/expressions/face-icon-small-smile.gif" border="0">
 

Alyssa

New member
Ditto to the other posts -- yes CF can present with chest infections only and no digestive issues (read my blog page for more details)

They will most likely start with only a sweat test -- be sure to ask for her "number" so you can make a more informed decision about further testing. Many times parents are told the test was "negative" because the number was below 60, but the scale goes like this:

up to 40 = normal
41-60 = borderline
61 + = positive

But MANY people who test out in the 30's are told it is not CF, then find out through genetic testing that they do in fact have CF. My personal recommendation is this:

If the patient continues to have CF type symptoms with a sweat test anywhere in the 30's (and a rare few are in the 20's) should get extremely pushy with the medical staff to continue with FULL genetic testing. Do not allow them to only do a limited test. As Sakasuka says there are over 1500 known genes to test for now -- make them test for all of them or you will still not know for sure.

On another note: about the "being sick" I'm assuming you mean, she coughs and then throws up her food. This is a problem for us with our son and he is 20 years old ! When he coughs up junk (mucus) out of the lungs, it hits the back of the throat it hits his gag reflex and it makes him throw up. His stomach is not upset, but the mucus made him gag. If it turns out your daughter does have CF, then one of the preventative medications is Pulmozyme which thins the mucus so it's easier to cough up - that may help her.

Best of luck - keep us posted !
 

Alyssa

New member
Ditto to the other posts -- yes CF can present with chest infections only and no digestive issues (read my blog page for more details)

They will most likely start with only a sweat test -- be sure to ask for her "number" so you can make a more informed decision about further testing. Many times parents are told the test was "negative" because the number was below 60, but the scale goes like this:

up to 40 = normal
41-60 = borderline
61 + = positive

But MANY people who test out in the 30's are told it is not CF, then find out through genetic testing that they do in fact have CF. My personal recommendation is this:

If the patient continues to have CF type symptoms with a sweat test anywhere in the 30's (and a rare few are in the 20's) should get extremely pushy with the medical staff to continue with FULL genetic testing. Do not allow them to only do a limited test. As Sakasuka says there are over 1500 known genes to test for now -- make them test for all of them or you will still not know for sure.

On another note: about the "being sick" I'm assuming you mean, she coughs and then throws up her food. This is a problem for us with our son and he is 20 years old ! When he coughs up junk (mucus) out of the lungs, it hits the back of the throat it hits his gag reflex and it makes him throw up. His stomach is not upset, but the mucus made him gag. If it turns out your daughter does have CF, then one of the preventative medications is Pulmozyme which thins the mucus so it's easier to cough up - that may help her.

Best of luck - keep us posted !
 

Alyssa

New member
Ditto to the other posts -- yes CF can present with chest infections only and no digestive issues (read my blog page for more details)

They will most likely start with only a sweat test -- be sure to ask for her "number" so you can make a more informed decision about further testing. Many times parents are told the test was "negative" because the number was below 60, but the scale goes like this:

up to 40 = normal
41-60 = borderline
61 + = positive

But MANY people who test out in the 30's are told it is not CF, then find out through genetic testing that they do in fact have CF. My personal recommendation is this:

If the patient continues to have CF type symptoms with a sweat test anywhere in the 30's (and a rare few are in the 20's) should get extremely pushy with the medical staff to continue with FULL genetic testing. Do not allow them to only do a limited test. As Sakasuka says there are over 1500 known genes to test for now -- make them test for all of them or you will still not know for sure.

On another note: about the "being sick" I'm assuming you mean, she coughs and then throws up her food. This is a problem for us with our son and he is 20 years old ! When he coughs up junk (mucus) out of the lungs, it hits the back of the throat it hits his gag reflex and it makes him throw up. His stomach is not upset, but the mucus made him gag. If it turns out your daughter does have CF, then one of the preventative medications is Pulmozyme which thins the mucus so it's easier to cough up - that may help her.

Best of luck - keep us posted !
 
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