Underweight?

[ByGrace]

Mistyjo, I wondered about the possibility of him not absorbing enough. The doctor might suggest the fecal elastase test, but I haven't seen any signs of issues there. Is it possible to be constipated and still have those issues?
<br />
<br />Sharon, I think you might be right, that since he is "atypical" it might not be necessary to keep him at 50%. I hope that will be the case anyway.
<br />
<br />Bill, I'm sure you're right. Sometimes we mothers get carried away with worrying for our little ones. You sound like my husband... he's always bringing me back to reality and calming me down. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[JENNYC]

When Abby was diagnosed at 2 her BMI was 15% and she was eating literally 3 times the amount of food that I was eating, at 2 years old!!! The day she got on enzymes her appetite became normal and 1 month later her BMI was 49%. What a difference enzymes made in our life..her bowels were normal her colds became under control and she started gaining weight like crazy(still not fat, still a skinny kid, just heavier than what we were use to). Of course every CF case is different, that is just our story. I wish they could have got you in sooner to your CF clinic. We went the very next day after we found out. I am so sorry you are having to wait, I know how agonizing that must be. For us the first year was a whirlwind of information and emotions! But everything will level out once you feel that you have a grip on everything and then you get to see what a miracle God has given you and there will become normallacy in your life. If there is one thing that I have learned, this forum is awesome and full of such wonderful helpful people. So keep asking any questions you have and good luck and God Bless.

 

[JENNYC]

When Abby was diagnosed at 2 her BMI was 15% and she was eating literally 3 times the amount of food that I was eating, at 2 years old!!! The day she got on enzymes her appetite became normal and 1 month later her BMI was 49%. What a difference enzymes made in our life..her bowels were normal her colds became under control and she started gaining weight like crazy(still not fat, still a skinny kid, just heavier than what we were use to). Of course every CF case is different, that is just our story. I wish they could have got you in sooner to your CF clinic. We went the very next day after we found out. I am so sorry you are having to wait, I know how agonizing that must be. For us the first year was a whirlwind of information and emotions! But everything will level out once you feel that you have a grip on everything and then you get to see what a miracle God has given you and there will become normallacy in your life. If there is one thing that I have learned, this forum is awesome and full of such wonderful helpful people. So keep asking any questions you have and good luck and God Bless.

 

[JENNYC]

When Abby was diagnosed at 2 her BMI was 15% and she was eating literally 3 times the amount of food that I was eating, at 2 years old!!! The day she got on enzymes her appetite became normal and 1 month later her BMI was 49%. What a difference enzymes made in our life..her bowels were normal her colds became under control and she started gaining weight like crazy(still not fat, still a skinny kid, just heavier than what we were use to). Of course every CF case is different, that is just our story. I wish they could have got you in sooner to your CF clinic. We went the very next day after we found out. I am so sorry you are having to wait, I know how agonizing that must be. For us the first year was a whirlwind of information and emotions! But everything will level out once you feel that you have a grip on everything and then you get to see what a miracle God has given you and there will become normallacy in your life. If there is one thing that I have learned, this forum is awesome and full of such wonderful helpful people. So keep asking any questions you have and good luck and God Bless.

 

[Mistyjo]

Jasey suffers from chronic constipation. Since starting the enzymes, we have been able to decrease her ex-lax from 5 squares a day to 3. If we can get the mucus in her stools under control, I think we could probably decrease it even more.

 

[Mistyjo]

Jasey suffers from chronic constipation. Since starting the enzymes, we have been able to decrease her ex-lax from 5 squares a day to 3. If we can get the mucus in her stools under control, I think we could probably decrease it even more.

 

[Mistyjo]

Jasey suffers from chronic constipation. Since starting the enzymes, we have been able to decrease her ex-lax from 5 squares a day to 3. If we can get the mucus in her stools under control, I think we could probably decrease it even more.

 

[khavice]

My story is so much like JENNYC's it's kind of scary. My daughter's even named Abby... weird. Anyway, our clinic got us in the day after diagnosis and then had Abby in the hospital the day after that for her first clean out and a battery of tests. That was 7 years ago when she was dx at 5. She was ALWAYS the little kid and sort of still is but her BMI is great now. I guess I always knew that something had to be wrong. Sounds horrible, but I was glad to get a diagnosis and know what to do to help her. Hang in there. It will level out. As with everything else there are good days and bad days and with sites like these there is a way to talk things out when you need to. Good luck!

 

[khavice]

My story is so much like JENNYC's it's kind of scary. My daughter's even named Abby... weird. Anyway, our clinic got us in the day after diagnosis and then had Abby in the hospital the day after that for her first clean out and a battery of tests. That was 7 years ago when she was dx at 5. She was ALWAYS the little kid and sort of still is but her BMI is great now. I guess I always knew that something had to be wrong. Sounds horrible, but I was glad to get a diagnosis and know what to do to help her. Hang in there. It will level out. As with everything else there are good days and bad days and with sites like these there is a way to talk things out when you need to. Good luck!

 

[khavice]

My story is so much like JENNYC's it's kind of scary. My daughter's even named Abby... weird. Anyway, our clinic got us in the day after diagnosis and then had Abby in the hospital the day after that for her first clean out and a battery of tests. That was 7 years ago when she was dx at 5. She was ALWAYS the little kid and sort of still is but her BMI is great now. I guess I always knew that something had to be wrong. Sounds horrible, but I was glad to get a diagnosis and know what to do to help her. Hang in there. It will level out. As with everything else there are good days and bad days and with sites like these there is a way to talk things out when you need to. Good luck!

 

[ByGrace]

Wow, I'm surprised to hear that there are two of you (at least) that got into the CF clinic the next day! I'm not going to complain though.... our family doctor didn't even want us to go to the CF clinic. She tried to send us to a geneticist instead, but they couldn't see us until January and I wasn't waiting that long. I finally talked her into the referral I wanted. However, we've been waiting for the pediatric GI doctor for over a month and still have a couple weeks to go before that appt. *sigh* It looks like I'm being taught a lesson about patience. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[ByGrace]

Wow, I'm surprised to hear that there are two of you (at least) that got into the CF clinic the next day! I'm not going to complain though.... our family doctor didn't even want us to go to the CF clinic. She tried to send us to a geneticist instead, but they couldn't see us until January and I wasn't waiting that long. I finally talked her into the referral I wanted. However, we've been waiting for the pediatric GI doctor for over a month and still have a couple weeks to go before that appt. *sigh* It looks like I'm being taught a lesson about patience. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[ByGrace]

Wow, I'm surprised to hear that there are two of you (at least) that got into the CF clinic the next day! I'm not going to complain though.... our family doctor didn't even want us to go to the CF clinic. She tried to send us to a geneticist instead, but they couldn't see us until January and I wasn't waiting that long. I finally talked her into the referral I wanted. However, we've been waiting for the pediatric GI doctor for over a month and still have a couple weeks to go before that appt. *sigh* It looks like I'm being taught a lesson about patience. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Printer]

Pam:

If you can't get your Primary Physician to give you the referrals that you want/need, get a new PCP.

Bill

 

[Printer]

Pam:

If you can't get your Primary Physician to give you the referrals that you want/need, get a new PCP.

Bill

 

[Printer]

Pam:
<br />
<br />If you can't get your Primary Physician to give you the referrals that you want/need, get a new PCP.
<br />
<br />Bill

 

[ByGrace]

Bill, unfortunately that's easier said than done. My husband is in the Marine Corps and military doctors don't think the same way as civilian doctors. Since they're in no danger of losing "business", they tend to not listen as quickly. At least that's the way it feels sometimes. If I do have any more issues I will get my husband involved. But I think that once the CF doctor makes her recommendations, our PCM will follow along.

 

[ByGrace]

Bill, unfortunately that's easier said than done. My husband is in the Marine Corps and military doctors don't think the same way as civilian doctors. Since they're in no danger of losing "business", they tend to not listen as quickly. At least that's the way it feels sometimes. If I do have any more issues I will get my husband involved. But I think that once the CF doctor makes her recommendations, our PCM will follow along.

 

[ByGrace]

Bill, unfortunately that's easier said than done. My husband is in the Marine Corps and military doctors don't think the same way as civilian doctors. Since they're in no danger of losing "business", they tend to not listen as quickly. At least that's the way it feels sometimes. If I do have any more issues I will get my husband involved. But I think that once the CF doctor makes her recommendations, our PCM will follow along.

 

[rmotion]

I have done well on a g-tube and besides just getting calories I get real nutrition - what ever I a can fit in a blender.
Today for breakfast I had - 3 hard boiled eggs, 1/2 c walnuts, 2tbl avacado, 1/c squash, 1 tbl olive oil and 2 tbl honey, via blender and g-tube. Your cf body needs real nutrition not just formula from a can!