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jaynebryan96
12-23-2006, 07:25 PM
Have just joined this forum, i have an 8.5 month old son (my 3rd child) who has had problems since birth. Started off with him not taking a bottle, would scream and prefer to sleep than feed. This was combined with foul smelling diorhhoea (sorry about spelling) they put this down to lactose intollerance and changed his formula (at 5wks old) improved for a few days then started again. they put him on an anti allergan milk which again improved for a little while. He was referred to a paediatrician who diagnosed some acid build up and was given ranitidine medication which helped him to have some feed.

He was then diagnosed with a dairy allergy, comes out in rash in in any contact with dairy products. He looking back always sounded as though he had a raspy chest (not very good description) when he breathes sounds very congested, and you can feel it when you hold him around his ribs (if you know what i mean). Have taken him on numerous occasions to our gp who said his chest sounded clear that it was just a cough and cold.

At the moment he is on his 3rd chest infection since the end of october, forgot to mention that even from the day he was born he sweated loads, friends have all commented on what a sweaty baby he is (he is wet at times on his back and his hair) he also has failure to thrive was born quite big at 8lbs but at 8.5 months is just 16lbs, but is growing well in length.

At his last hospital review for his weight i saw a different dr, i again mentioned about his sweatiness and that he has an odd smell when he sweats and she immediately said he needed sweat tests to see if it was cf.

Sorry this post is so long but they cannot do any of the tests until the new year, and i was just wondering if this sounds familiar to any of you or if your babies have completely different symptoms.

Have done loads of research on cf and we are prepared if that is his diagnosis the just not knowing at the moment is driving us mad.

Thank you for reading this lengthy post and your replies would be most grateful.

Jayne & Callum - England

jaynebryan96
12-23-2006, 07:25 PM
Have just joined this forum, i have an 8.5 month old son (my 3rd child) who has had problems since birth. Started off with him not taking a bottle, would scream and prefer to sleep than feed. This was combined with foul smelling diorhhoea (sorry about spelling) they put this down to lactose intollerance and changed his formula (at 5wks old) improved for a few days then started again. they put him on an anti allergan milk which again improved for a little while. He was referred to a paediatrician who diagnosed some acid build up and was given ranitidine medication which helped him to have some feed.

He was then diagnosed with a dairy allergy, comes out in rash in in any contact with dairy products. He looking back always sounded as though he had a raspy chest (not very good description) when he breathes sounds very congested, and you can feel it when you hold him around his ribs (if you know what i mean). Have taken him on numerous occasions to our gp who said his chest sounded clear that it was just a cough and cold.

At the moment he is on his 3rd chest infection since the end of october, forgot to mention that even from the day he was born he sweated loads, friends have all commented on what a sweaty baby he is (he is wet at times on his back and his hair) he also has failure to thrive was born quite big at 8lbs but at 8.5 months is just 16lbs, but is growing well in length.

At his last hospital review for his weight i saw a different dr, i again mentioned about his sweatiness and that he has an odd smell when he sweats and she immediately said he needed sweat tests to see if it was cf.

Sorry this post is so long but they cannot do any of the tests until the new year, and i was just wondering if this sounds familiar to any of you or if your babies have completely different symptoms.

Have done loads of research on cf and we are prepared if that is his diagnosis the just not knowing at the moment is driving us mad.

Thank you for reading this lengthy post and your replies would be most grateful.

Jayne & Callum - England

jaynebryan96
12-23-2006, 07:25 PM
Have just joined this forum, i have an 8.5 month old son (my 3rd child) who has had problems since birth. Started off with him not taking a bottle, would scream and prefer to sleep than feed. This was combined with foul smelling diorhhoea (sorry about spelling) they put this down to lactose intollerance and changed his formula (at 5wks old) improved for a few days then started again. they put him on an anti allergan milk which again improved for a little while. He was referred to a paediatrician who diagnosed some acid build up and was given ranitidine medication which helped him to have some feed.

He was then diagnosed with a dairy allergy, comes out in rash in in any contact with dairy products. He looking back always sounded as though he had a raspy chest (not very good description) when he breathes sounds very congested, and you can feel it when you hold him around his ribs (if you know what i mean). Have taken him on numerous occasions to our gp who said his chest sounded clear that it was just a cough and cold.

At the moment he is on his 3rd chest infection since the end of october, forgot to mention that even from the day he was born he sweated loads, friends have all commented on what a sweaty baby he is (he is wet at times on his back and his hair) he also has failure to thrive was born quite big at 8lbs but at 8.5 months is just 16lbs, but is growing well in length.

At his last hospital review for his weight i saw a different dr, i again mentioned about his sweatiness and that he has an odd smell when he sweats and she immediately said he needed sweat tests to see if it was cf.

Sorry this post is so long but they cannot do any of the tests until the new year, and i was just wondering if this sounds familiar to any of you or if your babies have completely different symptoms.

Have done loads of research on cf and we are prepared if that is his diagnosis the just not knowing at the moment is driving us mad.

Thank you for reading this lengthy post and your replies would be most grateful.

Jayne & Callum - England

JazzysMom
12-23-2006, 09:26 PM
It definitely sounds like a reason to test. I am glad that the other doctor thought it good to do so immediately. Good Luck & keep us upated!

JazzysMom
12-23-2006, 09:26 PM
It definitely sounds like a reason to test. I am glad that the other doctor thought it good to do so immediately. Good Luck & keep us upated!

JazzysMom
12-23-2006, 09:26 PM
It definitely sounds like a reason to test. I am glad that the other doctor thought it good to do so immediately. Good Luck & keep us upated!

Mommafirst
12-24-2006, 01:05 AM
Your story isn't the same as mine, but does certainly sound like its a reason to test. My daughter was diagnosed at 5 months, tested due to a meconium plug at birth. She is 11 months and weighs just 17lbs. I also think she sounds raspy at times, but the docs always say her lungs sound clear -- it drives me nuts and makes me doubt myself.

An yway, I just wanted to say hello and that we were in limbo for five months before my daughter was diagnosed. They were long and difficult months and once we had a diagnosis, it definitely got easier to manage. Limbo is an awful place to be. I hope you get some answers. I'm sure you will love this board.

Mommafirst
12-24-2006, 01:05 AM
Your story isn't the same as mine, but does certainly sound like its a reason to test. My daughter was diagnosed at 5 months, tested due to a meconium plug at birth. She is 11 months and weighs just 17lbs. I also think she sounds raspy at times, but the docs always say her lungs sound clear -- it drives me nuts and makes me doubt myself.

An yway, I just wanted to say hello and that we were in limbo for five months before my daughter was diagnosed. They were long and difficult months and once we had a diagnosis, it definitely got easier to manage. Limbo is an awful place to be. I hope you get some answers. I'm sure you will love this board.

Mommafirst
12-24-2006, 01:05 AM
Your story isn't the same as mine, but does certainly sound like its a reason to test. My daughter was diagnosed at 5 months, tested due to a meconium plug at birth. She is 11 months and weighs just 17lbs. I also think she sounds raspy at times, but the docs always say her lungs sound clear -- it drives me nuts and makes me doubt myself.

An yway, I just wanted to say hello and that we were in limbo for five months before my daughter was diagnosed. They were long and difficult months and once we had a diagnosis, it definitely got easier to manage. Limbo is an awful place to be. I hope you get some answers. I'm sure you will love this board.

ddawes27
12-24-2006, 04:16 AM
I hope your test is negative.

ddawes27
12-24-2006, 04:16 AM
I hope your test is negative.

ddawes27
12-24-2006, 04:16 AM
I hope your test is negative.

jaynebryan96
01-03-2007, 05:34 PM
Just to keep you all informed, we are still waiting for the appointment for the sweat tests. Callum has actually put some weight on which we are really pleased with.

Have done the test with his poops in the toilet and so far they have not floated but in the last week have got far smellier and look funny ( sorry if tmi) so really hoping that it isn't cf.

Hope all your children are keeping well and it will definately be a forum that i keep in touch with to see how everyone is getting on.

jaynebryan96
01-03-2007, 05:34 PM
Just to keep you all informed, we are still waiting for the appointment for the sweat tests. Callum has actually put some weight on which we are really pleased with.

Have done the test with his poops in the toilet and so far they have not floated but in the last week have got far smellier and look funny ( sorry if tmi) so really hoping that it isn't cf.

Hope all your children are keeping well and it will definately be a forum that i keep in touch with to see how everyone is getting on.

jaynebryan96
01-03-2007, 05:34 PM
Just to keep you all informed, we are still waiting for the appointment for the sweat tests. Callum has actually put some weight on which we are really pleased with.

Have done the test with his poops in the toilet and so far they have not floated but in the last week have got far smellier and look funny ( sorry if tmi) so really hoping that it isn't cf.

Hope all your children are keeping well and it will definately be a forum that i keep in touch with to see how everyone is getting on.

lalasmomallie
01-03-2007, 05:40 PM
I can relate all too well to how you are feeling right now. We too are waiting for our sweat test on the 18th of Jan. I am so frustrauted that we can't just go in and have this done now! Of course we've been searching for a diagnosis for over 14 months so I guess I should be able to wait another few weeks right! But this is all I can think of and it's driving me crazy! I pray for peace for both of our families.

lalasmomallie
01-03-2007, 05:40 PM
I can relate all too well to how you are feeling right now. We too are waiting for our sweat test on the 18th of Jan. I am so frustrauted that we can't just go in and have this done now! Of course we've been searching for a diagnosis for over 14 months so I guess I should be able to wait another few weeks right! But this is all I can think of and it's driving me crazy! I pray for peace for both of our families.

lalasmomallie
01-03-2007, 05:40 PM
I can relate all too well to how you are feeling right now. We too are waiting for our sweat test on the 18th of Jan. I am so frustrauted that we can't just go in and have this done now! Of course we've been searching for a diagnosis for over 14 months so I guess I should be able to wait another few weeks right! But this is all I can think of and it's driving me crazy! I pray for peace for both of our families.

Liamsmommy
01-03-2007, 05:44 PM
I know the waiting game all to well! We were lucky the last time my son was admited to hospital they did the sweat test well he was still in hospital but the down fall to that is that it wasnt done at a CF clinic and we still didnt get the answers we needed it was 39 "normal" Hope fully you all get the answers you are looking for and I hope that your testing is being done some place that deals hand in hand with CF or that you persue gen testing

Thoughts and prayers
Shawna

Liamsmommy
01-03-2007, 05:44 PM
I know the waiting game all to well! We were lucky the last time my son was admited to hospital they did the sweat test well he was still in hospital but the down fall to that is that it wasnt done at a CF clinic and we still didnt get the answers we needed it was 39 "normal" Hope fully you all get the answers you are looking for and I hope that your testing is being done some place that deals hand in hand with CF or that you persue gen testing

Thoughts and prayers
Shawna

Liamsmommy
01-03-2007, 05:44 PM
I know the waiting game all to well! We were lucky the last time my son was admited to hospital they did the sweat test well he was still in hospital but the down fall to that is that it wasnt done at a CF clinic and we still didnt get the answers we needed it was 39 "normal" Hope fully you all get the answers you are looking for and I hope that your testing is being done some place that deals hand in hand with CF or that you persue gen testing

Thoughts and prayers
Shawna