HELP...I don't know what else to do...

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suziecoffeebean

New member
Oh please don't get me wrong. If this holds any truth at all then I am glad they were told this. I am just a firm believer in telling the truth. I don't want them having false hope.
So Lauren said that they will be doing 2 breathing treatments everyday and they put them on enzymes and some type of inhaler twice a day. And she also said that they were looking into getting them this thing that they would blow into to break up the mucous in the lungs<<not sure what this is? But anyhow, I know she was having a hard time remembering everything to tell me but I do know that they both feel better after going to the doctor. That whole comment just disturbed me because I didn't know 70's was an attainable age. I am totally ignorant to a lot of this stuff. Just now learning more about it. I guess they are doing genetic testing. I don't think they ever had the genetic testing done. Not real sure why. I am pretty sure they were diagnosed based on sweat tests and the fact that Lauren was hospitalized 3-4 times in a couple of months for pneumonia when she was first born. Then they tested us all and found it in Joe too. I guess they told Joe that his seems more like asthma than CF. <<see I don't think this should have been said either not knowing for sure. Lauren also said they both had positive sweat tests yesterday too.
Anyhow, which ever way since I can't be there I am glad they are getting what they need. At least I hope they are. It has to be better than what they were getting. If I find out anything else today I will let you all know. Thanks for letting me vent here.
 
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suziecoffeebean

New member
I don't know what happened but like half of my post got deleted. I wanted to add to the other post that they are doing genetic tests now too. They never had this done when they were diagnosed. They just had positives sweats and Lauren had been hospitalized 3-4 times whithin a couple of months of being born for pneumonia. They told Joe that his seemed more like asthma than CF. Which I don't really think that should have been said without knowing for sure. But anyways, they both had positive sweat tests yesterday. They also told Joe that they want him to gain 10lbs before he comes back. They have another appointment in sept. I don't really know how they are planning to accomplish the weight gain but I knew he was way too skinny. He is 5'9" and weighs 120 lbs. Anyhow, I guess positive strides are being made as well just frustrating at the same time...for me anyways.
 
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suziecoffeebean

New member
I don't know what happened but like half of my post got deleted. I wanted to add to the other post that they are doing genetic tests now too. They never had this done when they were diagnosed. They just had positives sweats and Lauren had been hospitalized 3-4 times whithin a couple of months of being born for pneumonia. They told Joe that his seemed more like asthma than CF. Which I don't really think that should have been said without knowing for sure. But anyways, they both had positive sweat tests yesterday. They also told Joe that they want him to gain 10lbs before he comes back. They have another appointment in sept. I don't really know how they are planning to accomplish the weight gain but I knew he was way too skinny. He is 5'9" and weighs 120 lbs. Anyhow, I guess positive strides are being made as well just frustrating at the same time...for me anyways.
 
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suziecoffeebean

New member
I don't know what happened but like half of my post got deleted. I wanted to add to the other post that they are doing genetic tests now too. They never had this done when they were diagnosed. They just had positives sweats and Lauren had been hospitalized 3-4 times whithin a couple of months of being born for pneumonia. They told Joe that his seemed more like asthma than CF. Which I don't really think that should have been said without knowing for sure. But anyways, they both had positive sweat tests yesterday. They also told Joe that they want him to gain 10lbs before he comes back. They have another appointment in sept. I don't really know how they are planning to accomplish the weight gain but I knew he was way too skinny. He is 5'9" and weighs 120 lbs. Anyhow, I guess positive strides are being made as well just frustrating at the same time...for me anyways.
 
S

suziecoffeebean

New member
I don't know what happened but like half of my post got deleted. I wanted to add to the other post that they are doing genetic tests now too. They never had this done when they were diagnosed. They just had positives sweats and Lauren had been hospitalized 3-4 times whithin a couple of months of being born for pneumonia. They told Joe that his seemed more like asthma than CF. Which I don't really think that should have been said without knowing for sure. But anyways, they both had positive sweat tests yesterday. They also told Joe that they want him to gain 10lbs before he comes back. They have another appointment in sept. I don't really know how they are planning to accomplish the weight gain but I knew he was way too skinny. He is 5'9" and weighs 120 lbs. Anyhow, I guess positive strides are being made as well just frustrating at the same time...for me anyways.
 
S

suziecoffeebean

New member
I don't know what happened but like half of my post got deleted. I wanted to add to the other post that they are doing genetic tests now too. They never had this done when they were diagnosed. They just had positives sweats and Lauren had been hospitalized 3-4 times whithin a couple of months of being born for pneumonia. They told Joe that his seemed more like asthma than CF. Which I don't really think that should have been said without knowing for sure. But anyways, they both had positive sweat tests yesterday. They also told Joe that they want him to gain 10lbs before he comes back. They have another appointment in sept. I don't really know how they are planning to accomplish the weight gain but I knew he was way too skinny. He is 5'9" and weighs 120 lbs. Anyhow, I guess positive strides are being made as well just frustrating at the same time...for me anyways.
 
J

JORDYSMOM

New member
Suzie-

The enzymes are to help them gain weight and absorb nutrients. The rest of the items they were put on are almost identical to what my son does. We were jumping for joy when he gained 5 pounds in 3 months. He started working out with weights and drinking weight gainer shakes. It really made a difference in him.

It sounds like they are getting the treatments they need now. Just having a CF doc monitor them every 3 months should make a huge difference in their overall health. Imagine how much better they are going to feel now that they are getting their treatments. This really helps prove to the family and to the kids that your mother was so wrong in not getting them treatment.

I am just so proud of you! I know it's been hard and it will continue to be, but you are responsible for this great change in their lives. You rock girl!

Stacey
 
J

JORDYSMOM

New member
Suzie-

The enzymes are to help them gain weight and absorb nutrients. The rest of the items they were put on are almost identical to what my son does. We were jumping for joy when he gained 5 pounds in 3 months. He started working out with weights and drinking weight gainer shakes. It really made a difference in him.

It sounds like they are getting the treatments they need now. Just having a CF doc monitor them every 3 months should make a huge difference in their overall health. Imagine how much better they are going to feel now that they are getting their treatments. This really helps prove to the family and to the kids that your mother was so wrong in not getting them treatment.

I am just so proud of you! I know it's been hard and it will continue to be, but you are responsible for this great change in their lives. You rock girl!

Stacey
 
J

JORDYSMOM

New member
Suzie-

The enzymes are to help them gain weight and absorb nutrients. The rest of the items they were put on are almost identical to what my son does. We were jumping for joy when he gained 5 pounds in 3 months. He started working out with weights and drinking weight gainer shakes. It really made a difference in him.

It sounds like they are getting the treatments they need now. Just having a CF doc monitor them every 3 months should make a huge difference in their overall health. Imagine how much better they are going to feel now that they are getting their treatments. This really helps prove to the family and to the kids that your mother was so wrong in not getting them treatment.

I am just so proud of you! I know it's been hard and it will continue to be, but you are responsible for this great change in their lives. You rock girl!

Stacey
 
J

JORDYSMOM

New member
Suzie-

The enzymes are to help them gain weight and absorb nutrients. The rest of the items they were put on are almost identical to what my son does. We were jumping for joy when he gained 5 pounds in 3 months. He started working out with weights and drinking weight gainer shakes. It really made a difference in him.

It sounds like they are getting the treatments they need now. Just having a CF doc monitor them every 3 months should make a huge difference in their overall health. Imagine how much better they are going to feel now that they are getting their treatments. This really helps prove to the family and to the kids that your mother was so wrong in not getting them treatment.

I am just so proud of you! I know it's been hard and it will continue to be, but you are responsible for this great change in their lives. You rock girl!

Stacey
 
J

JORDYSMOM

New member
Suzie-

The enzymes are to help them gain weight and absorb nutrients. The rest of the items they were put on are almost identical to what my son does. We were jumping for joy when he gained 5 pounds in 3 months. He started working out with weights and drinking weight gainer shakes. It really made a difference in him.

It sounds like they are getting the treatments they need now. Just having a CF doc monitor them every 3 months should make a huge difference in their overall health. Imagine how much better they are going to feel now that they are getting their treatments. This really helps prove to the family and to the kids that your mother was so wrong in not getting them treatment.

I am just so proud of you! I know it's been hard and it will continue to be, but you are responsible for this great change in their lives. You rock girl!

Stacey
 
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mom2lillian

New member
Suzie-hopefully with them getting some treatments their PFT's will increase, 60 in a teen is no where near mild, it is moderate I believe. Hopefully they will also not be exposed to smoke any longer. mild moderate and severe are terms related to lung functions, atypical is a term coined to explain the barage of adult diangosis and asymptomatic CF'ers that are becoming more common now with advanced diagnostic techniques and increased awareness.

There are a # of suggestions you coudl give your brother for gaining weight, look in the nutritiion section.


Just remmeber you have achieved your goal of getting them treatment, this is 100% due to your perseverence--good job! I agree you should not apologize to your mom, I am sure counselor will give you good advice but apologizeing is like sayign what she is doing to all of you is ok.
 
M

mom2lillian

New member
Suzie-hopefully with them getting some treatments their PFT's will increase, 60 in a teen is no where near mild, it is moderate I believe. Hopefully they will also not be exposed to smoke any longer. mild moderate and severe are terms related to lung functions, atypical is a term coined to explain the barage of adult diangosis and asymptomatic CF'ers that are becoming more common now with advanced diagnostic techniques and increased awareness.

There are a # of suggestions you coudl give your brother for gaining weight, look in the nutritiion section.


Just remmeber you have achieved your goal of getting them treatment, this is 100% due to your perseverence--good job! I agree you should not apologize to your mom, I am sure counselor will give you good advice but apologizeing is like sayign what she is doing to all of you is ok.
 
M

mom2lillian

New member
Suzie-hopefully with them getting some treatments their PFT's will increase, 60 in a teen is no where near mild, it is moderate I believe. Hopefully they will also not be exposed to smoke any longer. mild moderate and severe are terms related to lung functions, atypical is a term coined to explain the barage of adult diangosis and asymptomatic CF'ers that are becoming more common now with advanced diagnostic techniques and increased awareness.

There are a # of suggestions you coudl give your brother for gaining weight, look in the nutritiion section.


Just remmeber you have achieved your goal of getting them treatment, this is 100% due to your perseverence--good job! I agree you should not apologize to your mom, I am sure counselor will give you good advice but apologizeing is like sayign what she is doing to all of you is ok.
 
M

mom2lillian

New member
Suzie-hopefully with them getting some treatments their PFT's will increase, 60 in a teen is no where near mild, it is moderate I believe. Hopefully they will also not be exposed to smoke any longer. mild moderate and severe are terms related to lung functions, atypical is a term coined to explain the barage of adult diangosis and asymptomatic CF'ers that are becoming more common now with advanced diagnostic techniques and increased awareness.

There are a # of suggestions you coudl give your brother for gaining weight, look in the nutritiion section.


Just remmeber you have achieved your goal of getting them treatment, this is 100% due to your perseverence--good job! I agree you should not apologize to your mom, I am sure counselor will give you good advice but apologizeing is like sayign what she is doing to all of you is ok.
 
M

mom2lillian

New member
Suzie-hopefully with them getting some treatments their PFT's will increase, 60 in a teen is no where near mild, it is moderate I believe. Hopefully they will also not be exposed to smoke any longer. mild moderate and severe are terms related to lung functions, atypical is a term coined to explain the barage of adult diangosis and asymptomatic CF'ers that are becoming more common now with advanced diagnostic techniques and increased awareness.

There are a # of suggestions you coudl give your brother for gaining weight, look in the nutritiion section.


Just remmeber you have achieved your goal of getting them treatment, this is 100% due to your perseverence--good job! I agree you should not apologize to your mom, I am sure counselor will give you good advice but apologizeing is like sayign what she is doing to all of you is ok.
 
J

jdprecious

New member
I have been following this thread for a long time... and I just wanted to add that because of you... your bro and sis are finally getting what they need... down the road they will realize that... it may not be now or tomorrow... but one day they will see who cared enough to give them the very best... and it certainly wasnt their mother...

hugs to you all,
Jess
 
J

jdprecious

New member
I have been following this thread for a long time... and I just wanted to add that because of you... your bro and sis are finally getting what they need... down the road they will realize that... it may not be now or tomorrow... but one day they will see who cared enough to give them the very best... and it certainly wasnt their mother...

hugs to you all,
Jess
 
J

jdprecious

New member
I have been following this thread for a long time... and I just wanted to add that because of you... your bro and sis are finally getting what they need... down the road they will realize that... it may not be now or tomorrow... but one day they will see who cared enough to give them the very best... and it certainly wasnt their mother...

hugs to you all,
Jess
 
J

jdprecious

New member
I have been following this thread for a long time... and I just wanted to add that because of you... your bro and sis are finally getting what they need... down the road they will realize that... it may not be now or tomorrow... but one day they will see who cared enough to give them the very best... and it certainly wasnt their mother...

hugs to you all,
Jess
 
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