F508 and W1282x

[MargaritaChic]

Thank you for the update. I am glad to hear things are going a little better.

Is your daughter going to a CF center? If yes, she should talk to the CF team about adding enzymes. They started Emma on them at our first appointment. It has helped. She eats a bit less. She cries a bit less when trying to have a bowel movement. And it helped her put on some weight. In 2 weeks she went from 6 pounds 8 ounces to a little more than 7 pounds 5 ounces.

Your family is in my thoughts and prayers daily. I hope you will keep in touch. If your daughter is interested in chatting at all please tell her to please contact me also! It is nice chatting with someone who is going through a situation so close to my own.

Either of you can contact me at margaritachic@msn.com.

(hugs)

Marla

 

[MargaritaChic]

Thank you for the update. I am glad to hear things are going a little better.

Is your daughter going to a CF center? If yes, she should talk to the CF team about adding enzymes. They started Emma on them at our first appointment. It has helped. She eats a bit less. She cries a bit less when trying to have a bowel movement. And it helped her put on some weight. In 2 weeks she went from 6 pounds 8 ounces to a little more than 7 pounds 5 ounces.

Your family is in my thoughts and prayers daily. I hope you will keep in touch. If your daughter is interested in chatting at all please tell her to please contact me also! It is nice chatting with someone who is going through a situation so close to my own.

Either of you can contact me at margaritachic@msn.com.

(hugs)

Marla

 

[MargaritaChic]

Thank you for the update. I am glad to hear things are going a little better.

Is your daughter going to a CF center? If yes, she should talk to the CF team about adding enzymes. They started Emma on them at our first appointment. It has helped. She eats a bit less. She cries a bit less when trying to have a bowel movement. And it helped her put on some weight. In 2 weeks she went from 6 pounds 8 ounces to a little more than 7 pounds 5 ounces.

Your family is in my thoughts and prayers daily. I hope you will keep in touch. If your daughter is interested in chatting at all please tell her to please contact me also! It is nice chatting with someone who is going through a situation so close to my own.

Either of you can contact me at margaritachic@msn.com.

(hugs)

Marla

 

[MargaritaChic]

Thank you for the update. I am glad to hear things are going a little better.

Is your daughter going to a CF center? If yes, she should talk to the CF team about adding enzymes. They started Emma on them at our first appointment. It has helped. She eats a bit less. She cries a bit less when trying to have a bowel movement. And it helped her put on some weight. In 2 weeks she went from 6 pounds 8 ounces to a little more than 7 pounds 5 ounces.

Your family is in my thoughts and prayers daily. I hope you will keep in touch. If your daughter is interested in chatting at all please tell her to please contact me also! It is nice chatting with someone who is going through a situation so close to my own.

Either of you can contact me at margaritachic@msn.com.

(hugs)

Marla

 

[MargaritaChic]

Thank you for the update. I am glad to hear things are going a little better.

Is your daughter going to a CF center? If yes, she should talk to the CF team about adding enzymes. They started Emma on them at our first appointment. It has helped. She eats a bit less. She cries a bit less when trying to have a bowel movement. And it helped her put on some weight. In 2 weeks she went from 6 pounds 8 ounces to a little more than 7 pounds 5 ounces.

Your family is in my thoughts and prayers daily. I hope you will keep in touch. If your daughter is interested in chatting at all please tell her to please contact me also! It is nice chatting with someone who is going through a situation so close to my own.

Either of you can contact me at margaritachic@msn.com.

(hugs)

Marla

 

[rnordlnd]

I'll give her the info. I do hope they give the baby something soon. Its been really tough to see her cry out, knowing that its not just colic that their is something wrong. Ella weighed in at 6 lb. 12 oz when she was born and was down to 6 lbs when she left the hospital. She's regained it but slowly.

on the wonderful side she's developing socially and has started to smile. So that helps with the bouts of crying <img src="i/expressions/face-icon-small-smile.gif" border="0"> Kinda evens it out.

How is your baby doing? She and Ella would have been born around the same time if she hadn't made an emergency appearance.

I've read a few other post that their CF babies stopped moving as much just before they were due. Wonder if that's significant? The ultrasound tech. couldn't even get her to move... scary time. She came out kickin and screamin though... awoken from her turkey day coma I think <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[rnordlnd]

I'll give her the info. I do hope they give the baby something soon. Its been really tough to see her cry out, knowing that its not just colic that their is something wrong. Ella weighed in at 6 lb. 12 oz when she was born and was down to 6 lbs when she left the hospital. She's regained it but slowly.

on the wonderful side she's developing socially and has started to smile. So that helps with the bouts of crying <img src="i/expressions/face-icon-small-smile.gif" border="0"> Kinda evens it out.

How is your baby doing? She and Ella would have been born around the same time if she hadn't made an emergency appearance.

I've read a few other post that their CF babies stopped moving as much just before they were due. Wonder if that's significant? The ultrasound tech. couldn't even get her to move... scary time. She came out kickin and screamin though... awoken from her turkey day coma I think <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[rnordlnd]

I'll give her the info. I do hope they give the baby something soon. Its been really tough to see her cry out, knowing that its not just colic that their is something wrong. Ella weighed in at 6 lb. 12 oz when she was born and was down to 6 lbs when she left the hospital. She's regained it but slowly.

on the wonderful side she's developing socially and has started to smile. So that helps with the bouts of crying <img src="i/expressions/face-icon-small-smile.gif" border="0"> Kinda evens it out.

How is your baby doing? She and Ella would have been born around the same time if she hadn't made an emergency appearance.

I've read a few other post that their CF babies stopped moving as much just before they were due. Wonder if that's significant? The ultrasound tech. couldn't even get her to move... scary time. She came out kickin and screamin though... awoken from her turkey day coma I think <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[rnordlnd]

I'll give her the info. I do hope they give the baby something soon. Its been really tough to see her cry out, knowing that its not just colic that their is something wrong. Ella weighed in at 6 lb. 12 oz when she was born and was down to 6 lbs when she left the hospital. She's regained it but slowly.

on the wonderful side she's developing socially and has started to smile. So that helps with the bouts of crying <img src="i/expressions/face-icon-small-smile.gif" border="0"> Kinda evens it out.

How is your baby doing? She and Ella would have been born around the same time if she hadn't made an emergency appearance.

I've read a few other post that their CF babies stopped moving as much just before they were due. Wonder if that's significant? The ultrasound tech. couldn't even get her to move... scary time. She came out kickin and screamin though... awoken from her turkey day coma I think <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[rnordlnd]

I'll give her the info. I do hope they give the baby something soon. Its been really tough to see her cry out, knowing that its not just colic that their is something wrong. Ella weighed in at 6 lb. 12 oz when she was born and was down to 6 lbs when she left the hospital. She's regained it but slowly.

on the wonderful side she's developing socially and has started to smile. So that helps with the bouts of crying <img src="i/expressions/face-icon-small-smile.gif" border="0"> Kinda evens it out.

How is your baby doing? She and Ella would have been born around the same time if she hadn't made an emergency appearance.

I've read a few other post that their CF babies stopped moving as much just before they were due. Wonder if that's significant? The ultrasound tech. couldn't even get her to move... scary time. She came out kickin and screamin though... awoken from her turkey day coma I think <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[MargaritaChic]

Emma moved alot in the weeks before her due date. She was due on 12/14, but I had an unplanned c-section on 12/5 after 21 hours of labor. She was born at 7 pounds 3.2 ounces, but was down to 6 pounds 8 ounces when we left the hospital. Now she is up to a little more than 7 pounds 5 ounces.

She is doing well. Spitting up more than I would like her to, but as long as she continues to gain weight I won't worry too much.

Hugs to you and your family.

Marla

 

[MargaritaChic]

Emma moved alot in the weeks before her due date. She was due on 12/14, but I had an unplanned c-section on 12/5 after 21 hours of labor. She was born at 7 pounds 3.2 ounces, but was down to 6 pounds 8 ounces when we left the hospital. Now she is up to a little more than 7 pounds 5 ounces.

She is doing well. Spitting up more than I would like her to, but as long as she continues to gain weight I won't worry too much.

Hugs to you and your family.

Marla

 

[MargaritaChic]

Emma moved alot in the weeks before her due date. She was due on 12/14, but I had an unplanned c-section on 12/5 after 21 hours of labor. She was born at 7 pounds 3.2 ounces, but was down to 6 pounds 8 ounces when we left the hospital. Now she is up to a little more than 7 pounds 5 ounces.

She is doing well. Spitting up more than I would like her to, but as long as she continues to gain weight I won't worry too much.

Hugs to you and your family.

Marla

 

[MargaritaChic]

Emma moved alot in the weeks before her due date. She was due on 12/14, but I had an unplanned c-section on 12/5 after 21 hours of labor. She was born at 7 pounds 3.2 ounces, but was down to 6 pounds 8 ounces when we left the hospital. Now she is up to a little more than 7 pounds 5 ounces.

She is doing well. Spitting up more than I would like her to, but as long as she continues to gain weight I won't worry too much.

Hugs to you and your family.

Marla

 

[MargaritaChic]

Emma moved alot in the weeks before her due date. She was due on 12/14, but I had an unplanned c-section on 12/5 after 21 hours of labor. She was born at 7 pounds 3.2 ounces, but was down to 6 pounds 8 ounces when we left the hospital. Now she is up to a little more than 7 pounds 5 ounces.

She is doing well. Spitting up more than I would like her to, but as long as she continues to gain weight I won't worry too much.

Hugs to you and your family.

Marla

 

[MargaritaChic]

Information on a new drug, PTC-124 that is in clinical trials and may be the answer for people who have X mutations as your granddaughter and my daughter do.

Here is an article about it:

<a target=_blank class=ftalternatingbarlinklarge href="http://www.timesonline.co.uk/tol/news/uk/science/article1690544.ece
">http://www.timesonline.co.uk/t...ce/article1690544.ece
</a>
There are many other articles if you google "PTC 124". It is in phase 2 trials in the U.S. The drug only helps CF patients with a stop mutation, which means you have an X in the name of the gene. The cool thing is it does not only work with CF but any other genetic disease with a stop mutation so will help many other folks.

 

[MargaritaChic]

Information on a new drug, PTC-124 that is in clinical trials and may be the answer for people who have X mutations as your granddaughter and my daughter do.

Here is an article about it:

<a target=_blank class=ftalternatingbarlinklarge href="http://www.timesonline.co.uk/tol/news/uk/science/article1690544.ece
">http://www.timesonline.co.uk/t...ce/article1690544.ece
</a>
There are many other articles if you google "PTC 124". It is in phase 2 trials in the U.S. The drug only helps CF patients with a stop mutation, which means you have an X in the name of the gene. The cool thing is it does not only work with CF but any other genetic disease with a stop mutation so will help many other folks.

 

[MargaritaChic]

Information on a new drug, PTC-124 that is in clinical trials and may be the answer for people who have X mutations as your granddaughter and my daughter do.

Here is an article about it:

<a target=_blank class=ftalternatingbarlinklarge href="http://www.timesonline.co.uk/tol/news/uk/science/article1690544.ece
">http://www.timesonline.co.uk/t...ce/article1690544.ece
</a>
There are many other articles if you google "PTC 124". It is in phase 2 trials in the U.S. The drug only helps CF patients with a stop mutation, which means you have an X in the name of the gene. The cool thing is it does not only work with CF but any other genetic disease with a stop mutation so will help many other folks.

 

[MargaritaChic]

Information on a new drug, PTC-124 that is in clinical trials and may be the answer for people who have X mutations as your granddaughter and my daughter do.

Here is an article about it:

<a target=_blank class=ftalternatingbarlinklarge href="http://www.timesonline.co.uk/tol/news/uk/science/article1690544.ece
">http://www.timesonline.co.uk/t...ce/article1690544.ece
</a>
There are many other articles if you google "PTC 124". It is in phase 2 trials in the U.S. The drug only helps CF patients with a stop mutation, which means you have an X in the name of the gene. The cool thing is it does not only work with CF but any other genetic disease with a stop mutation so will help many other folks.

 

[MargaritaChic]

Information on a new drug, PTC-124 that is in clinical trials and may be the answer for people who have X mutations as your granddaughter and my daughter do.

Here is an article about it:

<a target=_blank class=ftalternatingbarlinklarge href="http://www.timesonline.co.uk/tol/news/uk/science/article1690544.ece
">http://www.timesonline.co.uk/t...ce/article1690544.ece
</a>
There are many other articles if you google "PTC 124". It is in phase 2 trials in the U.S. The drug only helps CF patients with a stop mutation, which means you have an X in the name of the gene. The cool thing is it does not only work with CF but any other genetic disease with a stop mutation so will help many other folks.