Newly diagnosed niece

BabyJackiesaunt · Feb 25, 2006

My niece was diagnosed at 2 weeks, for failure to gain weight, shortly there after, like in two days, she was readmitted to the hospital with pneumonia. She has been admitted again for pneumonia in her right lung, she's almost three months old. Now her liver enzymes are elevated, her sinuses are very congested. We are very upset and confused, it seems the doctor tells us something new everytime he comes in, but he is always positive. He sees a number of CF patients in the area. We wonder about a second opinion, does anyone have any advice for us, we live in the Tampa, Florida area and we haven't met anyone with CF yet. The baby is on two kinds of antibiotics IV, Albuterol, and Pulmonzyme(not sure about the spelling) now she's going to be on liver medication, and of course her enzymes and vitamins. I hope this doesn't seem rambling but we're very worried about her and just want to do what's best for her. We were told that she has started symptoms at an early age and she could have a very severe case. If anyone has had similar experiences, I would like to know. Thanks.

BabyJackiesaunt · Feb 25, 2006

My niece was diagnosed at 2 weeks, for failure to gain weight, shortly there after, like in two days, she was readmitted to the hospital with pneumonia. She has been admitted again for pneumonia in her right lung, she's almost three months old. Now her liver enzymes are elevated, her sinuses are very congested. We are very upset and confused, it seems the doctor tells us something new everytime he comes in, but he is always positive. He sees a number of CF patients in the area. We wonder about a second opinion, does anyone have any advice for us, we live in the Tampa, Florida area and we haven't met anyone with CF yet. The baby is on two kinds of antibiotics IV, Albuterol, and Pulmonzyme(not sure about the spelling) now she's going to be on liver medication, and of course her enzymes and vitamins. I hope this doesn't seem rambling but we're very worried about her and just want to do what's best for her. We were told that she has started symptoms at an early age and she could have a very severe case. If anyone has had similar experiences, I would like to know. Thanks.

JazzysMom · Feb 25, 2006

First thing you need to is take a deep breath. Now I suggest the parents get a notebook of some kind & start writing everything down in a log. There will be a lot of info given, a lot of ??? asked & a lot in general to remember. This will give them a reference instead of wracking their brains trying to remember it all. When they are babies it is hard, but its not a reason to panic. Very often with CF when one thing starts, it triggers another problem. A perfect example is your nieces sinuses & pneumonia. It could very well be connected (sinuses draining into the chest etc), but not necessarily. Quite often when you get one thing under control the rest will follow. Many of the problems she is experiencing is common. If her parents feel a 2nd opinion is needed (even if to give them peace of mind) then do it. I will, however, note that there are doctors who have been known to think quite differently on the approach of CF care. Some are proactive (preventing things from happening the best they can, but is controversial due to the antibiotics used with no actual infection) versus reactive (actually treating an infection or flareup). As far as the care in your area. That I cant help with, but I know there are people on this forum from Florida that should be able to give their opinion. Tho she is having a rough start....that doesnt gaurantee that she will continually have this amount of problems or that her CF will be severe immediately. BUT it doesnt mean she wont either. She is a baby & even tho statistics go by the "average" person....each CF is different & that goes for what bothers them, what works for them etc. I highly recommend you &/or her parents coming on here for additional opinions (that is what they are), experiences or general feedback. If nothing else to know there are other CFers & families facing the same thing. That along can be a big help! Keep us updated!

JazzysMom · Feb 25, 2006

First thing you need to is take a deep breath. Now I suggest the parents get a notebook of some kind & start writing everything down in a log. There will be a lot of info given, a lot of ??? asked & a lot in general to remember. This will give them a reference instead of wracking their brains trying to remember it all. When they are babies it is hard, but its not a reason to panic. Very often with CF when one thing starts, it triggers another problem. A perfect example is your nieces sinuses & pneumonia. It could very well be connected (sinuses draining into the chest etc), but not necessarily. Quite often when you get one thing under control the rest will follow. Many of the problems she is experiencing is common. If her parents feel a 2nd opinion is needed (even if to give them peace of mind) then do it. I will, however, note that there are doctors who have been known to think quite differently on the approach of CF care. Some are proactive (preventing things from happening the best they can, but is controversial due to the antibiotics used with no actual infection) versus reactive (actually treating an infection or flareup). As far as the care in your area. That I cant help with, but I know there are people on this forum from Florida that should be able to give their opinion. Tho she is having a rough start....that doesnt gaurantee that she will continually have this amount of problems or that her CF will be severe immediately. BUT it doesnt mean she wont either. She is a baby & even tho statistics go by the "average" person....each CF is different & that goes for what bothers them, what works for them etc. I highly recommend you &/or her parents coming on here for additional opinions (that is what they are), experiences or general feedback. If nothing else to know there are other CFers & families facing the same thing. That along can be a big help! Keep us updated!

thelizardqueen · Feb 25, 2006

<blockquote>Quote <hr>Originally posted by: BabyJackiesaunt We were told that she has started symptoms at an early age and she could have a very severe case.<hr></blockquote>

Are you saying that because she is showing symptoms earlier in life, then that means that she will have a severe case? - I know that isn't the case (maybe I am misunderstanding you). I was diagnosed at 6 weeks of age, and I'm 24 years old, and have a mild form as of now. I've been hospitilized once in my life on IV for a lung infection, and that is when I was 15 years old. Every CF patient is different, and doctors cannot tell what age we will all live to. When I was diagnosed, my doctors told my mum that I wouldn't live past the age of 5. Then it was 12, 14, 18 and then 24. I am 24 now, and am very healthy for a CFer. A lot of it is based on gene mutation, and a lot based on how well you take care of yourself. Be very diligent when it comes to meds, diet, exercise & physio. This is key to longevity with us.

thelizardqueen · Feb 25, 2006

<blockquote>Quote <hr>Originally posted by: BabyJackiesaunt We were told that she has started symptoms at an early age and she could have a very severe case.<hr></blockquote>

Are you saying that because she is showing symptoms earlier in life, then that means that she will have a severe case? - I know that isn't the case (maybe I am misunderstanding you). I was diagnosed at 6 weeks of age, and I'm 24 years old, and have a mild form as of now. I've been hospitilized once in my life on IV for a lung infection, and that is when I was 15 years old. Every CF patient is different, and doctors cannot tell what age we will all live to. When I was diagnosed, my doctors told my mum that I wouldn't live past the age of 5. Then it was 12, 14, 18 and then 24. I am 24 now, and am very healthy for a CFer. A lot of it is based on gene mutation, and a lot based on how well you take care of yourself. Be very diligent when it comes to meds, diet, exercise & physio. This is key to longevity with us.

anonymous · Feb 25, 2006

Welcome! Sorry to hear about your nieces diagnosis. I have a four-year old daughter and two-year old son. They both have cf and are now the picture of health. BUT my daughter did not gain an ounce of weight until she was diagnosed at 5 weeks of age. She had pneumonia at 4 months of age. My son had blockage at birth and his liver enzymes were way high his first year. He also had pneumonia at 3 months of age. After their first six months things really improved for them. They were then able to get over colds easily with only needing oral antibiotics about once a year. My son's liver enzymes have been down to normal and his liver size is good which is important. He will on actigal (the liver med) long term even though his numbers look good. Both of my children are on pulmozyme since they were babies and I think it helps keep them healthy. It doesn't sound like your niece is very different (symptom wise) than many of the cf kids I hear about. One cf mom explained how her daughter with cf was always a lot sicker than her son with cf. Her son rarely had any problems. But he ended up passing away long before her daughter. You just can't predict this disease.
Sharon, mom of Sophia, 4 and Jack, 2 both with cf

anonymous · Feb 25, 2006

Welcome! Sorry to hear about your nieces diagnosis. I have a four-year old daughter and two-year old son. They both have cf and are now the picture of health. BUT my daughter did not gain an ounce of weight until she was diagnosed at 5 weeks of age. She had pneumonia at 4 months of age. My son had blockage at birth and his liver enzymes were way high his first year. He also had pneumonia at 3 months of age. After their first six months things really improved for them. They were then able to get over colds easily with only needing oral antibiotics about once a year. My son's liver enzymes have been down to normal and his liver size is good which is important. He will on actigal (the liver med) long term even though his numbers look good. Both of my children are on pulmozyme since they were babies and I think it helps keep them healthy. It doesn't sound like your niece is very different (symptom wise) than many of the cf kids I hear about. One cf mom explained how her daughter with cf was always a lot sicker than her son with cf. Her son rarely had any problems. But he ended up passing away long before her daughter. You just can't predict this disease.
Sharon, mom of Sophia, 4 and Jack, 2 both with cf

damiensmom · Feb 25, 2006

My son also takes Actigal for hes liver. He also has been hospitalized 4 phemonuia. I have stopped thinking or contemplating the severe to moderate thing. I have read to many stories that have convinced me otherwise. my son is almost 6 months and I am new to this also. But this forum has helped me as im sure it will u. God Bless.

damiensmom · Feb 25, 2006

My son also takes Actigal for hes liver. He also has been hospitalized 4 phemonuia. I have stopped thinking or contemplating the severe to moderate thing. I have read to many stories that have convinced me otherwise. my son is almost 6 months and I am new to this also. But this forum has helped me as im sure it will u. God Bless.

anonymous · Feb 26, 2006

[No message]

anonymous · Feb 26, 2006

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BabyJackiesaunt · Feb 26, 2006

Thanks so much to ALL of you. Just to know there are others that have experienced the same thing is a help. I read them to the baby's Mom and I have printed them to take to the hospital for her to read for herself. Again, thank you and I'm sure I'll be writing again.
Carol, Baby Jackie's Aunt

BabyJackiesaunt · Feb 26, 2006

Thanks so much to ALL of you. Just to know there are others that have experienced the same thing is a help. I read them to the baby's Mom and I have printed them to take to the hospital for her to read for herself. Again, thank you and I'm sure I'll be writing again.
Carol, Baby Jackie's Aunt

julie · Feb 26, 2006

Carol, My husband had symptoms at birth as well (constant colds, pneumonia, inability to digest ANYTHING but breast milk...) but he wasn't diagnosed until he was 18mos. He is now 25 and quite healthy for having CF. The severity of CF at birth or even young childhood does not necessairly dicate someone's "lifespan" in relation to their CF. Keep you head up <img src="i/expressions/face-icon-small-smile.gif" border="0">!! With the proper antibiotics and other CF medications and treatments, this child can live a very long and fulfilling life.

My husband is getting ready to graduate college in May with a degree in business administration and a minor in international business. He will also be a father in October of this year (we just did in vitro and it was successful <img src="i/expressions/face-icon-small-smile.gif" border="0">! and things are looking wonderful with his health. He just makes sure to keep his weight up-eats a lot, even when he isn't hungry (easier to do with a teen/adult than a baby/child) and is convinced that is what keeps him healthy. He does get lung infections 2-3 times a year, and use to get pneumonia every year(sometime 2-3 times a year) but this number dropped when he was able to get his weight up.

It is VERY possible for a person with CF to live a normal and fulfilling life. I am glad that you have found this site and hop that you, as well as the baby's mother/father and the rest of this family can find comfort, friendship and answers on this forum. Its a great place to be!!!

Welcome,

julie · Feb 26, 2006

Carol, My husband had symptoms at birth as well (constant colds, pneumonia, inability to digest ANYTHING but breast milk...) but he wasn't diagnosed until he was 18mos. He is now 25 and quite healthy for having CF. The severity of CF at birth or even young childhood does not necessairly dicate someone's "lifespan" in relation to their CF. Keep you head up <img src="i/expressions/face-icon-small-smile.gif" border="0">!! With the proper antibiotics and other CF medications and treatments, this child can live a very long and fulfilling life.

My husband is getting ready to graduate college in May with a degree in business administration and a minor in international business. He will also be a father in October of this year (we just did in vitro and it was successful <img src="i/expressions/face-icon-small-smile.gif" border="0">! and things are looking wonderful with his health. He just makes sure to keep his weight up-eats a lot, even when he isn't hungry (easier to do with a teen/adult than a baby/child) and is convinced that is what keeps him healthy. He does get lung infections 2-3 times a year, and use to get pneumonia every year(sometime 2-3 times a year) but this number dropped when he was able to get his weight up.

It is VERY possible for a person with CF to live a normal and fulfilling life. I am glad that you have found this site and hop that you, as well as the baby's mother/father and the rest of this family can find comfort, friendship and answers on this forum. Its a great place to be!!!

Welcome,

anonymous · Feb 26, 2006

Hi

Sorry to hear about the difficult start that your niece is having. Our son who is now 16 months was born with meconium ileus (blocked bowel due to his CF). We had no idea that we were carriers of the CF genes so it was a complete shock. He was operated on a 1 day old and they created a temporary illeostomy. It was extremely overwhelming at the time with all the information, peoples opinions, etc that we were trying to take in. His illeostomy was reversed at 4 months with a few complications but he is now the picture of health. As some others have said a rough start doesn't always spell out what its going to be like in the future.

Hope she is feeling much better soon. Just take one day at a time and do your best not to get too overwhelmed by the things you may be hearing. Every person with CF is different and once your family get used to her medication it will just come as second nature and seem like normal routine.

anonymous · Feb 26, 2006

Hi

Sorry to hear about the difficult start that your niece is having. Our son who is now 16 months was born with meconium ileus (blocked bowel due to his CF). We had no idea that we were carriers of the CF genes so it was a complete shock. He was operated on a 1 day old and they created a temporary illeostomy. It was extremely overwhelming at the time with all the information, peoples opinions, etc that we were trying to take in. His illeostomy was reversed at 4 months with a few complications but he is now the picture of health. As some others have said a rough start doesn't always spell out what its going to be like in the future.

Hope she is feeling much better soon. Just take one day at a time and do your best not to get too overwhelmed by the things you may be hearing. Every person with CF is different and once your family get used to her medication it will just come as second nature and seem like normal routine.

anonymous · Feb 27, 2006

Hey Julie,

Congratulations on your husbands graduation. It is great to hear good news. I am new to this post and read it daily but it is hard to see the things that people go through with cf. so is great to hear something that is good and gives hope. The one thing I have read is that there is a lot of similar things that happen when you have cf although it affects everyone differently. My grandson is 13 months old and has weight gain problems of course and bowel issues. I have never had anyone I know in my family have a chronic illness so this is all new to me. Thanks for letting me share.

Margo B

anonymous · Feb 27, 2006

Hey Julie,

Congratulations on your husbands graduation. It is great to hear good news. I am new to this post and read it daily but it is hard to see the things that people go through with cf. so is great to hear something that is good and gives hope. The one thing I have read is that there is a lot of similar things that happen when you have cf although it affects everyone differently. My grandson is 13 months old and has weight gain problems of course and bowel issues. I have never had anyone I know in my family have a chronic illness so this is all new to me. Thanks for letting me share.

Margo B

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