second opinion about treatment

suni · Oct 18, 2011

Hello, I am a mother of three years old girl. A month ago she was diagnosed with CF and in hospital they had found an extremely high chloride (first 244, second time 154). Regardin symptoms she had only problems with digestion and salty skin. Genetic analysis showed homozig deltaf508. In addition to Creon and vitamin therapy are given daily hypertonic saline inhalation of 5-7% from the previous use of Ventolin. For now, my child had NO respiratory symptoms, so I am interested in experiences of others in prevention. I am afraid that she is still too small for such an aggressive daily inhalation.
 I am still feeling very sad,helpless ... and my biggest fear is what tomorrow brings becaouse I can't imagine something bad happens to her.
 Natasa

suni · Oct 18, 2011

Hello, I am a mother of three years old girl.A month ago she was diagnosed with CF and in hospital they had found an extremely high chloride (first 244, second time 154). Regardin symptoms she hadonly problems with digestion and salty skin. Genetic analysis showed homozig deltaf508. In addition to Creon and vitamin therapy are given daily hypertonic saline inhalation of 5-7% from the previous use of Ventolin. For now, my child had NO respiratory symptoms, so I am interested in experiences of others in prevention. I am afraid that sheis still too small for such an aggressive daily inhalation.
 I am still feeling very sad,helpless ...andmy biggest fear is what tomorrow brings becaouse I can't imagine something bad happensto her.
 Natasa

suni · Oct 18, 2011

Hello, I am a mother of three years old girl.A month ago she was diagnosed with CF and in hospital they had found an extremely high chloride (first 244, second time 154). Regardin symptoms she hadonly problems with digestion and salty skin. Genetic analysis showed homozig deltaf508. In addition to Creon and vitamin therapy are given daily hypertonic saline inhalation of 5-7% from the previous use of Ventolin. For now, my child had NO respiratory symptoms, so I am interested in experiences of others in prevention. I am afraid that sheis still too small for such an aggressive daily inhalation.
 I am still feeling very sad,helpless ...andmy biggest fear is what tomorrow brings becaouse I can't imagine something bad happensto her.
 Natasa

khavice · Oct 18, 2011

First I am sorry about your diagnosis. CF is a monster but is manageable. My daughter was diagnosed at the age of 5 and that was 7 years ago. She is happy, healthy and has even taken up the French horn. <div>AH does have some lung involvement and the doctors were very aggressive with her treatments from the start. Right now she does albuterol 3 times a day, hypertonic twice and pulmazyme once. The thinking is that if we keep infections down, we can save lung tissue for later when they need it. I would say that is what your docs are trying to do. However, EVERY case of CF is different. I have met adult CF's who do not even need digestive enzymes. </div><div>Talk to your docs about your concerns. Are you going to a clinic? Do they have a resp. therapist you could discuss your concerns with? </div><div>I am glad you found this site. It's helpful to talk to others who are in your same boat.</div>

khavice · Oct 18, 2011

First I am sorry about your diagnosis. CF is a monster but is manageable. My daughter was diagnosed at the age of 5 and that was 7 years ago. She is happy, healthy and has even taken up the French horn. AH does have some lung involvement and the doctors were very aggressive with her treatments from the start. Right now she does albuterol 3 times a day, hypertonic twice and pulmazyme once. The thinking is that if we keep infections down, we can save lung tissue for later when they need it. I would say that is what your docs are trying to do. However, EVERY case of CF is different. I have met adult CF's who do not even need digestive enzymes.Talk to your docs about your concerns. Are you going to a clinic? Do they have a resp. therapist you could discuss your concerns with? I am glad you found this site. It's helpful to talk to others who are in your same boat.

khavice · Oct 18, 2011

First I am sorry about your diagnosis. CF is a monster but is manageable. My daughter was diagnosed at the age of 5 and that was 7 years ago. She is happy, healthy and has even taken up the French horn. AH does have some lung involvement and the doctors were very aggressive with her treatments from the start. Right now she does albuterol 3 times a day, hypertonic twice and pulmazyme once. The thinking is that if we keep infections down, we can save lung tissue for later when they need it. I would say that is what your docs are trying to do. However, EVERY case of CF is different. I have met adult CF's who do not even need digestive enzymes.Talk to your docs about your concerns. Are you going to a clinic? Do they have a resp. therapist you could discuss your concerns with? I am glad you found this site. It's helpful to talk to others who are in your same boat.

khavice · Oct 18, 2011

First I am sorry about your diagnosis. CF is a monster but is manageable. My daughter was diagnosed at the age of 5 and that was 7 years ago. She is happy, healthy and has even taken up the French horn. <div>AH does have some lung involvement and the doctors were very aggressive with her treatments from the start. Right now she does albuterol 3 times a day, hypertonic twice and pulmazyme once. The thinking is that if we keep infections down, we can save lung tissue for later when they need it. I would say that is what your docs are trying to do. However, EVERY case of CF is different. I have met adult CF's who do not even need digestive enzymes. </div><div>Talk to your docs about your concerns. Are you going to a clinic? Do they have a resp. therapist you could discuss your concerns with? </div><div>I am glad you found this site. It's helpful to talk to others who are in your same boat.</div>

khavice · Oct 18, 2011

First I am sorry about your diagnosis. CF is a monster but is manageable. My daughter was diagnosed at the age of 5 and that was 7 years ago. She is happy, healthy and has even taken up the French horn. AH does have some lung involvement and the doctors were very aggressive with her treatments from the start. Right now she does albuterol 3 times a day, hypertonic twice and pulmazyme once. The thinking is that if we keep infections down, we can save lung tissue for later when they need it. I would say that is what your docs are trying to do. However, EVERY case of CF is different. I have met adult CF's who do not even need digestive enzymes.Talk to your docs about your concerns. Are you going to a clinic? Do they have a resp. therapist you could discuss your concerns with? I am glad you found this site. It's helpful to talk to others who are in your same boat.

khavice · Oct 18, 2011

First I am sorry about your diagnosis. CF is a monster but is manageable. My daughter was diagnosed at the age of 5 and that was 7 years ago. She is happy, healthy and has even taken up the French horn. AH does have some lung involvement and the doctors were very aggressive with her treatments from the start. Right now she does albuterol 3 times a day, hypertonic twice and pulmazyme once. The thinking is that if we keep infections down, we can save lung tissue for later when they need it. I would say that is what your docs are trying to do. However, EVERY case of CF is different. I have met adult CF's who do not even need digestive enzymes.Talk to your docs about your concerns. Are you going to a clinic? Do they have a resp. therapist you could discuss your concerns with? I am glad you found this site. It's helpful to talk to others who are in your same boat.

edan · Oct 18, 2011

Hi. I am so sorry you are going through this. My family went through it exactly 1 and a half years ago when my daughter was 3 as well. With her however, she had ZERO symptoms (we only found out because we were thinking of having another baby and my genius OB suggested I get tested for carrier status. The rest is history.

Anyway, I had some of the same concerns you did. My daughter had maybe 3 colds those first 3 years that she got over just like any non-CF kids. She doesn't need enzymes either. About 1 months after diagnosis she caught what I believe was pertussis and we hadn't gotten the vest approved yet by insurance so airway clearance was less than optimal. Long story short, she ended up in the hospital 2 days after the vest finally came through. If we had her treatments in order, I am 95% convinced we would have avoided the hospital stay.

Now that more than a year has settled, I have done accomplished the following:

1.) Consulted thsi site probably 50 times.
2.) Become extremely active in the cf foundation
3.) Joined a parent's support group.
4.) Researched extensively throughout the internet.
5.) Took my daughter's file to Minneapolis (one of the best clinics in the country).
6.) Took my daughter to Stanford (another one of the best).
7.) Consulted with CF pediatric directors in Israel, Ireland, UNC (because they were "experts" in certain areas that I had questions about, like my daughter's mutations, certain symptoms she was having, reactions to medications, etc. 8.) have met with Vertex pharmaceuticals a handful of times (they are engineernig vx770, etc in my town)

The list goes on and on really. So as a result, this is my take away:

We need to keep our children's lungs as healthy as possible for as long as possible, preventatively. For us, that means Vest and nebulized medications (we stick mostly to HTS and sometimes pulmozyme when well, and add albuterol when sick). Just because they don't have visible symptoms, it doesn't mean progression isn't happening. My daughter's first xray with 3 years of no treatment had a few minor "plugs". And remember she appeared to be symptomless. This last xray 1.5 years later showed those had cleared up. I can only attribute it to the aggressive treatments we have been giving her. I thank my lucky stars that we "accidentally" found out so that we were able to get at the disease before it caused any permanent damage.

If you want to talk through some of this, feel free to PM me your contact info. I had so many people help me along the way and it was invaluable. I was in your shoes not that long ago and after a year and a half of solely focusing on my daughter with treatments, research, etc, I think I have almost come full circle now with getting back to a sense of calm and a new normal. You will be able to do this too. Sorry for the rambling<img src="i/expressions/face-icon-small-smile.gif" border="0">

Edan.

edan · Oct 18, 2011

Hi. I am so sorry you are going through this. My family went through it exactly 1 and a half years ago when my daughter was 3 as well. With her however, she had ZERO symptoms (we only found out because we were thinking of having another baby and my genius OB suggested I get tested for carrier status. The rest is history.

Anyway, I had some of the same concerns you did. My daughter had maybe 3 colds those first 3 years that she got over just like any non-CF kids. She doesn't need enzymes either. About 1 months after diagnosis she caught what I believe was pertussis and we hadn't gotten the vest approved yet by insurance so airway clearance was less than optimal. Long story short, she ended up in the hospital 2 days after the vest finally came through. If we had her treatments in order, I am 95% convinced we would have avoided the hospital stay.

Now that more than a year has settled, I have done accomplished the following:

1.) Consulted thsi site probably 50 times.
2.) Become extremely active in the cf foundation
3.) Joined a parent's support group.
4.) Researched extensively throughout the internet.
5.) Took my daughter's file to Minneapolis (one of the best clinics in the country).
6.) Took my daughter to Stanford (another one of the best).
7.) Consulted with CF pediatric directors in Israel, Ireland, UNC (because they were "experts" in certain areas that I had questions about, like my daughter's mutations, certain symptoms she was having, reactions to medications, etc. 8.) have met with Vertex pharmaceuticals a handful of times (they are engineernig vx770, etc in my town)

The list goes on and on really. So as a result, this is my take away:

We need to keep our children's lungs as healthy as possible for as long as possible, preventatively. For us, that means Vest and nebulized medications (we stick mostly to HTS and sometimes pulmozyme when well, and add albuterol when sick). Just because they don't have visible symptoms, it doesn't mean progression isn't happening. My daughter's first xray with 3 years of no treatment had a few minor "plugs". And remember she appeared to be symptomless. This last xray 1.5 years later showed those had cleared up. I can only attribute it to the aggressive treatments we have been giving her. I thank my lucky stars that we "accidentally" found out so that we were able to get at the disease before it caused any permanent damage.

If you want to talk through some of this, feel free to PM me your contact info. I had so many people help me along the way and it was invaluable. I was in your shoes not that long ago and after a year and a half of solely focusing on my daughter with treatments, research, etc, I think I have almost come full circle now with getting back to a sense of calm and a new normal. You will be able to do this too. Sorry for the rambling<img src="i/expressions/face-icon-small-smile.gif" border="0">

Edan.

edan · Oct 18, 2011

Hi. I am so sorry you are going through this. My family went through it exactly 1 and a half years ago when my daughter was 3 as well. With her however, she had ZERO symptoms (we only found out because we were thinking of having another baby and my genius OB suggested I get tested for carrier status. The rest is history.
 
 Anyway, I had some of the same concerns you did. My daughter had maybe 3 colds those first 3 years that she got over just like any non-CF kids. She doesn't need enzymes either. About 1 months after diagnosis she caught what I believe was pertussis and we hadn't gotten the vest approved yet by insurance so airway clearance was less than optimal. Long story short, she ended up in the hospital 2 days after the vest finally came through. If we had her treatments in order, I am 95% convinced we would have avoided the hospital stay.
 
 Now that more than a year has settled, I have done accomplished the following:
 
 1.) Consulted thsi site probably 50 times.
 2.) Become extremely active in the cf foundation
 3.) Joined a parent's support group.
 4.) Researched extensively throughout the internet.
 5.) Took my daughter's file to Minneapolis (one of the best clinics in the country).
 6.) Took my daughter to Stanford (another one of the best).
 7.) Consulted with CF pediatric directors in Israel, Ireland, UNC (because they were "experts" in certain areas that I had questions about, like my daughter's mutations, certain symptoms she was having, reactions to medications, etc. 8.) have met with Vertex pharmaceuticals a handful of times (they are engineernig vx770, etc in my town)
 
 The list goes on and on really. So as a result, this is my take away:
 
 We need to keep our children's lungs as healthy as possible for as long as possible, preventatively. For us, that means Vest and nebulized medications (we stick mostly to HTS and sometimes pulmozyme when well, and add albuterol when sick). Just because they don't have visible symptoms, it doesn't mean progression isn't happening. My daughter's first xray with 3 years of no treatment had a few minor "plugs". And remember she appeared to be symptomless. This last xray 1.5 years later showed those had cleared up. I can only attribute it to the aggressive treatments we have been giving her. I thank my lucky stars that we "accidentally" found out so that we were able to get at the disease before it caused any permanent damage.
 
 If you want to talk through some of this, feel free to PM me your contact info. I had so many people help me along the way and it was invaluable. I was in your shoes not that long ago and after a year and a half of solely focusing on my daughter with treatments, research, etc, I think I have almost come full circle now with getting back to a sense of calm and a new normal. You will be able to do this too. Sorry for the rambling<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
 Edan.

suni · Oct 19, 2011

dear,
thank you very much for sending me this suporting words...first of all I have to mentioned that we are living in Croatia (Europe). In our country we have only 130 patients with c.f. and doctors don't have so big experience like in some other countries. We don't have any specialised clinics , thats why I will be gratefull if I will have oportunity to send all the papers we have to some doctors...but I am still searching on internet where to knock on the door
 
natasa

suni · Oct 19, 2011

dear,
thank you very much for sending me this suporting words...first of all I have to mentioned that we are living in Croatia (Europe). In our country we have only 130 patients with c.f. and doctors don't have so big experience like in some other countries. We don't have any specialised clinics, thats why I will be gratefull if I will have oportunity to send all the papers we have to some doctors...but I am still searching on internet where to knock on the door

natasa

suni · Oct 19, 2011

dear,
thank you very much for sending me this suporting words...first of all I have to mentioned that we are living in Croatia (Europe). In our country we have only 130 patients with c.f. and doctors don't have so big experience like in some other countries. We don't have any specialised clinics, thats why I will be gratefull if I will have oportunity to send all the papers we have to some doctors...but I am still searching on internet where to knock on the door

natasa

Tisha · Oct 19, 2011

Hello!
Hypertonic Saline seems a pretty good prevention. Ventolin is quite harsh though, so if she's not feeling out of breath I would't do it (it makes you feel uncomfortable with high pulse, in my experience).
Feel free to read my story (link below) to see what other things I have done.
Greetings!

Tisha · Oct 19, 2011

Hello!
Hypertonic Saline seems a pretty good prevention. Ventolin is quite harsh though, so if she's not feeling out of breath I would't do it (it makes you feel uncomfortable with high pulse, in my experience).
Feel free to read my story (link below) to see what other things I have done.
Greetings!

Tisha · Oct 19, 2011

Hello!
 Hypertonic Saline seems a pretty good prevention. Ventolin is quite harsh though, so if she's not feeling out of breath I would't do it (it makes you feel uncomfortable with high pulse, in my experience).
 Feel free to read my story (link below) to see what other things I have done.
 Greetings!

Ratatosk · Oct 19, 2011

My son has the same mutations. When he was diagnosed, due to a bowel obstruction, his doctor had us begin doing chest physiotherapy and nebulized bronchiodialotors right away. He indicated that people wcf are born with normal lungs; however, over time the lungs will become affected. Sounds like your doctors are being proactive.

As for your feelings of sadness. We've all been there. The diagnosis has been compared to the stages of grief. I still get worried -- mainly if ds gets a cold or is a little off. I worry about the future, but it's not that horrible panicky feeling full of what ifs that I got at the beginning. We just try to take things one step at a time, try not to get so overwhelmed, get into a routine.

Ratatosk · Oct 19, 2011

My son has the same mutations. When he was diagnosed, due to a bowel obstruction, his doctor had us begin doing chest physiotherapy and nebulized bronchiodialotors right away. He indicated that people wcf are born with normal lungs; however, over time the lungs will become affected. Sounds like your doctors are being proactive.

As for your feelings of sadness. We've all been there. The diagnosis has been compared to the stages of grief. I still get worried -- mainly if ds gets a cold or is a little off. I worry about the future, but it's not that horrible panicky feeling full of what ifs that I got at the beginning. We just try to take things one step at a time, try not to get so overwhelmed, get into a routine.

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