Update

F

Faith4Liliana

New member
Hello Everyone,
Hope all is well with everyone. Well today was the Dr's appointment
with the CF team. Liliana is up to 12lbs 6oz!!!!!
I'm so happy she is
gaining so much weight, not only that she is also 23 inches long.
The
visit today went very good. They and we were happy. They did up her
creon from 1/2 of a capsule to 3/4 of a capsule (Tricky trying to
measure that out). Her head is also growing. They are watching her head
because it seems to be growing the most. They said that they are not
concerned as of now, but if it starts to grow much more faster then they
will have reason for concern. I didn't really understand but they
said because she was malnourished for those few months her brain/head is
taking in all the vitamins trying to make up for lost time. And its OK to do
that but it should even out. If it doesn't then they want her to be
admitted so they can watch her as they adjust her vitamins. Her head
measurement was 42.5cm. Which I am not even sure if that under/over/normal
for age and body type. But anyways her lungs are very very clear. And they
did a throat culture today. So everything is going very good. They were going
to see us back in 8 weeks but they changed it to 4 weeks because they want to
keep and update on her head size. They did try to get blood again, but had no
luck. We will wait for a few more months and try again.

Has anyone had the head size issue come up with them or and thought on that
would be great. Thank you and wishing everyone great health. Please take
care...
Jen
<a target=_blank class=ftalternatingbarlinklarge href="http://i124.photobucket.com/albums/p5/herringtonj/Picture411.jpg">http://i124.photobucket.com/al...ingtonj/Picture411.jpg</a>
 
F

Faith4Liliana

New member
Hello Everyone,
Hope all is well with everyone. Well today was the Dr's appointment
with the CF team. Liliana is up to 12lbs 6oz!!!!!
I'm so happy she is
gaining so much weight, not only that she is also 23 inches long.
The
visit today went very good. They and we were happy. They did up her
creon from 1/2 of a capsule to 3/4 of a capsule (Tricky trying to
measure that out). Her head is also growing. They are watching her head
because it seems to be growing the most. They said that they are not
concerned as of now, but if it starts to grow much more faster then they
will have reason for concern. I didn't really understand but they
said because she was malnourished for those few months her brain/head is
taking in all the vitamins trying to make up for lost time. And its OK to do
that but it should even out. If it doesn't then they want her to be
admitted so they can watch her as they adjust her vitamins. Her head
measurement was 42.5cm. Which I am not even sure if that under/over/normal
for age and body type. But anyways her lungs are very very clear. And they
did a throat culture today. So everything is going very good. They were going
to see us back in 8 weeks but they changed it to 4 weeks because they want to
keep and update on her head size. They did try to get blood again, but had no
luck. We will wait for a few more months and try again.

Has anyone had the head size issue come up with them or and thought on that
would be great. Thank you and wishing everyone great health. Please take
care...
Jen
<a target=_blank class=ftalternatingbarlinklarge href="http://i124.photobucket.com/albums/p5/herringtonj/Picture411.jpg">http://i124.photobucket.com/al...ingtonj/Picture411.jpg</a>
 
F

Faith4Liliana

New member
Hello Everyone,
Hope all is well with everyone. Well today was the Dr's appointment
with the CF team. Liliana is up to 12lbs 6oz!!!!!
I'm so happy she is
gaining so much weight, not only that she is also 23 inches long.
The
visit today went very good. They and we were happy. They did up her
creon from 1/2 of a capsule to 3/4 of a capsule (Tricky trying to
measure that out). Her head is also growing. They are watching her head
because it seems to be growing the most. They said that they are not
concerned as of now, but if it starts to grow much more faster then they
will have reason for concern. I didn't really understand but they
said because she was malnourished for those few months her brain/head is
taking in all the vitamins trying to make up for lost time. And its OK to do
that but it should even out. If it doesn't then they want her to be
admitted so they can watch her as they adjust her vitamins. Her head
measurement was 42.5cm. Which I am not even sure if that under/over/normal
for age and body type. But anyways her lungs are very very clear. And they
did a throat culture today. So everything is going very good. They were going
to see us back in 8 weeks but they changed it to 4 weeks because they want to
keep and update on her head size. They did try to get blood again, but had no
luck. We will wait for a few more months and try again.

Has anyone had the head size issue come up with them or and thought on that
would be great. Thank you and wishing everyone great health. Please take
care...
Jen
<a target=_blank class=ftalternatingbarlinklarge href="http://i124.photobucket.com/albums/p5/herringtonj/Picture411.jpg">http://i124.photobucket.com/al...ingtonj/Picture411.jpg</a>
 
C

coltsfan715

New member
I am going to say this and it may seem very .. well ... Odd, but I will share it anyway.

I head issues with the size of my head as an infant. The docs thought my head was too large. They kept an eye on it as well. Then they decided to measure it and measure the size of my parents heads as well. They determined that each of my parents had a larger head size than average as well. Once they saw it was a family related issue they stopped watching it so closely. I haven't had any problems related to the size of my head lol ... except that some shirt head holes are too small.

I hope that it evens out and that there is no need for her to have to have other tests run.

Lindsey
 
C

coltsfan715

New member
I am going to say this and it may seem very .. well ... Odd, but I will share it anyway.

I head issues with the size of my head as an infant. The docs thought my head was too large. They kept an eye on it as well. Then they decided to measure it and measure the size of my parents heads as well. They determined that each of my parents had a larger head size than average as well. Once they saw it was a family related issue they stopped watching it so closely. I haven't had any problems related to the size of my head lol ... except that some shirt head holes are too small.

I hope that it evens out and that there is no need for her to have to have other tests run.

Lindsey
 
C

coltsfan715

New member
I am going to say this and it may seem very .. well ... Odd, but I will share it anyway.

I head issues with the size of my head as an infant. The docs thought my head was too large. They kept an eye on it as well. Then they decided to measure it and measure the size of my parents heads as well. They determined that each of my parents had a larger head size than average as well. Once they saw it was a family related issue they stopped watching it so closely. I haven't had any problems related to the size of my head lol ... except that some shirt head holes are too small.

I hope that it evens out and that there is no need for her to have to have other tests run.

Lindsey
 
F

folione

New member
Congrats on the good appointment - it always makes us feel better when our son (3 w/CF) gets an "all clear" report.

You can probably get plenty of scare-stories about what bad things can be presaged by head size...but if I were in your shoes and made up my mind that I wanted to hear it, I'd just ask the Doctor to tell me specifically what it is they are worried about. i.e. what bad thing are they worried might happen if this continues. On the other hand, sometimes I just prefer to wait and not look for bad news that has a low probability of not turning out true.

By the way, that 3/4 creon capsule issue: When we were using partial capsules at that age, we got the Dr. to write the Rx based on using whole capsules then we just dumped the whole thing in applesauce and left behind what we didn't need. It was easier than trying to open it and pour and etc. without it flying all over the kitchen.
 
F

folione

New member
Congrats on the good appointment - it always makes us feel better when our son (3 w/CF) gets an "all clear" report.

You can probably get plenty of scare-stories about what bad things can be presaged by head size...but if I were in your shoes and made up my mind that I wanted to hear it, I'd just ask the Doctor to tell me specifically what it is they are worried about. i.e. what bad thing are they worried might happen if this continues. On the other hand, sometimes I just prefer to wait and not look for bad news that has a low probability of not turning out true.

By the way, that 3/4 creon capsule issue: When we were using partial capsules at that age, we got the Dr. to write the Rx based on using whole capsules then we just dumped the whole thing in applesauce and left behind what we didn't need. It was easier than trying to open it and pour and etc. without it flying all over the kitchen.
 
F

folione

New member
Congrats on the good appointment - it always makes us feel better when our son (3 w/CF) gets an "all clear" report.

You can probably get plenty of scare-stories about what bad things can be presaged by head size...but if I were in your shoes and made up my mind that I wanted to hear it, I'd just ask the Doctor to tell me specifically what it is they are worried about. i.e. what bad thing are they worried might happen if this continues. On the other hand, sometimes I just prefer to wait and not look for bad news that has a low probability of not turning out true.

By the way, that 3/4 creon capsule issue: When we were using partial capsules at that age, we got the Dr. to write the Rx based on using whole capsules then we just dumped the whole thing in applesauce and left behind what we didn't need. It was easier than trying to open it and pour and etc. without it flying all over the kitchen.
 
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