Pancreas issues ..sigh

M

martysmom

New member
Oh I am having a terrible day. Today was not a typical CF clinic visit but we went to clinic today. We had to see GI and endocrine. My baby is taking such a high dose of enzymes that the doctor is concerned. They want to increase the prevacid even more and they can't increase his enzyme dose. His growth is not doing as well as it should be considering he is taking in over 3500 cals a day.
He had been tested for every other issue that could cause continued malabsorption and everything came back clear except that he is severly PI. What the heck are we suppose to do if nothing works!
Then on to endo we go. I am beyond freaked out by this. He had some high blood sugar readings at home and then he was monitored at this last tune up. Some of those readings were also high. His hemoglobin A1C was normal (thank goodness). However, he is showing some signs of possible CF related diabetes. I was told today by the endo doctor that he is the youngest CFer he has ever had! I want to cry! The only good thing we have going for us right now is that most of his readings have been normal. He now has to be monitored and I have to prick his little finger all the time.
This is on top of all the lung stuff that he has had recently. He just had a tune up last month and it didn't get rid of these (BAD WORD) bugs!!
I was so scared when I walked out of the building that I accidently went it to the men's room! Oh my thank goodness there was no one in there!
I am so sorry for going on and on. I needed to let this out. I need to get some sleep tonight and this always helps. Thanks for always being there guys! It is hard to talk to my family and friends about this because it scares them and they don't understand.
 
M

martysmom

New member
Oh I am having a terrible day. Today was not a typical CF clinic visit but we went to clinic today. We had to see GI and endocrine. My baby is taking such a high dose of enzymes that the doctor is concerned. They want to increase the prevacid even more and they can't increase his enzyme dose. His growth is not doing as well as it should be considering he is taking in over 3500 cals a day.
He had been tested for every other issue that could cause continued malabsorption and everything came back clear except that he is severly PI. What the heck are we suppose to do if nothing works!
Then on to endo we go. I am beyond freaked out by this. He had some high blood sugar readings at home and then he was monitored at this last tune up. Some of those readings were also high. His hemoglobin A1C was normal (thank goodness). However, he is showing some signs of possible CF related diabetes. I was told today by the endo doctor that he is the youngest CFer he has ever had! I want to cry! The only good thing we have going for us right now is that most of his readings have been normal. He now has to be monitored and I have to prick his little finger all the time.
This is on top of all the lung stuff that he has had recently. He just had a tune up last month and it didn't get rid of these (BAD WORD) bugs!!
I was so scared when I walked out of the building that I accidently went it to the men's room! Oh my thank goodness there was no one in there!
I am so sorry for going on and on. I needed to let this out. I need to get some sleep tonight and this always helps. Thanks for always being there guys! It is hard to talk to my family and friends about this because it scares them and they don't understand.
 
M

martysmom

New member
Oh I am having a terrible day. Today was not a typical CF clinic visit but we went to clinic today. We had to see GI and endocrine. My baby is taking such a high dose of enzymes that the doctor is concerned. They want to increase the prevacid even more and they can't increase his enzyme dose. His growth is not doing as well as it should be considering he is taking in over 3500 cals a day.
<br />He had been tested for every other issue that could cause continued malabsorption and everything came back clear except that he is severly PI. What the heck are we suppose to do if nothing works!
<br />Then on to endo we go. I am beyond freaked out by this. He had some high blood sugar readings at home and then he was monitored at this last tune up. Some of those readings were also high. His hemoglobin A1C was normal (thank goodness). However, he is showing some signs of possible CF related diabetes. I was told today by the endo doctor that he is the youngest CFer he has ever had! I want to cry! The only good thing we have going for us right now is that most of his readings have been normal. He now has to be monitored and I have to prick his little finger all the time.
<br />This is on top of all the lung stuff that he has had recently. He just had a tune up last month and it didn't get rid of these (BAD WORD) bugs!!
<br />I was so scared when I walked out of the building that I accidently went it to the men's room! Oh my thank goodness there was no one in there!
<br />I am so sorry for going on and on. I needed to let this out. I need to get some sleep tonight and this always helps. Thanks for always being there guys! It is hard to talk to my family and friends about this because it scares them and they don't understand.
 
P

Printer

Active member
Hi Kelly:

CF didn't have a name until I was 15 and then only babys had CF. I was always a really skinny kid, when I got married I was 5 8 and 120 lbs.

Most of my problems have been and still are digestive. I take 10 Creon 24 with each meal.

I know that you are scared but the situation may not be as bad as you think.

Because my lungs were and still are decent, I played basketball in Jr College (not great but I played) and I was a lifeguard for five years on a Massachusetts ocean beach.

I managed an under grad degree and did post grad work in a MBA program. We just celebrated our 48th weddind anniversary.

Again, I know that you are scared but the situtation may not be as bad as yiu think. Besides THERE WILL BE A CURE IN YOUR LIFETIME.

Bill
 
P

Printer

Active member
Hi Kelly:

CF didn't have a name until I was 15 and then only babys had CF. I was always a really skinny kid, when I got married I was 5 8 and 120 lbs.

Most of my problems have been and still are digestive. I take 10 Creon 24 with each meal.

I know that you are scared but the situation may not be as bad as you think.

Because my lungs were and still are decent, I played basketball in Jr College (not great but I played) and I was a lifeguard for five years on a Massachusetts ocean beach.

I managed an under grad degree and did post grad work in a MBA program. We just celebrated our 48th weddind anniversary.

Again, I know that you are scared but the situtation may not be as bad as yiu think. Besides THERE WILL BE A CURE IN YOUR LIFETIME.

Bill
 
P

Printer

Active member
Hi Kelly:
<br />
<br />CF didn't have a name until I was 15 and then only babys had CF. I was always a really skinny kid, when I got married I was 5 8 and 120 lbs.
<br />
<br />Most of my problems have been and still are digestive. I take 10 Creon 24 with each meal.
<br />
<br />I know that you are scared but the situation may not be as bad as you think.
<br />
<br />Because my lungs were and still are decent, I played basketball in Jr College (not great but I played) and I was a lifeguard for five years on a Massachusetts ocean beach.
<br />
<br />I managed an under grad degree and did post grad work in a MBA program. We just celebrated our 48th weddind anniversary.
<br />
<br />Again, I know that you are scared but the situtation may not be as bad as yiu think. Besides THERE WILL BE A CURE IN YOUR LIFETIME.
<br />
<br />Bill
 
M

Mommafirst

Guest
Bill -- I wish there was a LIKE button, because I love everything you said.

Kelly -- I'm so sorry you are dealing with more crap right now. Poor Marty, he is such a trooper. I wish I had suggestions or ideas, but all I have is an ear to listen and a cyber hug to offer. CF sucks. Its incredibly unpredictable and frustrating!!!!
 
M

Mommafirst

Guest
Bill -- I wish there was a LIKE button, because I love everything you said.

Kelly -- I'm so sorry you are dealing with more crap right now. Poor Marty, he is such a trooper. I wish I had suggestions or ideas, but all I have is an ear to listen and a cyber hug to offer. CF sucks. Its incredibly unpredictable and frustrating!!!!
 
M

Mommafirst

Guest
Bill -- I wish there was a LIKE button, because I love everything you said.
<br />
<br />Kelly -- I'm so sorry you are dealing with more crap right now. Poor Marty, he is such a trooper. I wish I had suggestions or ideas, but all I have is an ear to listen and a cyber hug to offer. CF sucks. Its incredibly unpredictable and frustrating!!!!
 
M

martysmom

New member
Bill Thank you so much for your encouraging words! You are truley inspirational!!

Heather, I loved the cyber hug. I am in tears today. I think I got to put Marty to bed and wait for hubby to bring me some wine. It has been rough because my poor husband has to work like a dog so that we can pay for all of this stuff and I am left alone to go walk into the men's room!! LOL I really need to try to let it go and enjoy the holidays but all I can think about is doctors, pancreases and (bad word) staph and pseudomonas!! Oh and those (Bad Bad word) PFTs!!

Thanks you so much guys!!
 
M

martysmom

New member
Bill Thank you so much for your encouraging words! You are truley inspirational!!

Heather, I loved the cyber hug. I am in tears today. I think I got to put Marty to bed and wait for hubby to bring me some wine. It has been rough because my poor husband has to work like a dog so that we can pay for all of this stuff and I am left alone to go walk into the men's room!! LOL I really need to try to let it go and enjoy the holidays but all I can think about is doctors, pancreases and (bad word) staph and pseudomonas!! Oh and those (Bad Bad word) PFTs!!

Thanks you so much guys!!
 
M

martysmom

New member
Bill Thank you so much for your encouraging words! You are truley inspirational!!
<br />
<br />Heather, I loved the cyber hug. I am in tears today. I think I got to put Marty to bed and wait for hubby to bring me some wine. It has been rough because my poor husband has to work like a dog so that we can pay for all of this stuff and I am left alone to go walk into the men's room!! LOL I really need to try to let it go and enjoy the holidays but all I can think about is doctors, pancreases and (bad word) staph and pseudomonas!! Oh and those (Bad Bad word) PFTs!!
<br />
<br />Thanks you so much guys!!
 
E

ehtansky21

New member
We have actually been doing plant enzymes on top of the prescription enzymes and are seeing some weight gain. Our GI doc basically said he didn't think it would hurt to try and see what they do. Our boys are both severely PI, at a <15, so we are doing anything we can to compensate for those darn pancreases not working!!!
I know this does not address the diabetes aspect, but hope it gives you some ideas for the GI part.
Hugs to you!!! I think we need to just make Christmas at another part of the year...it seems like all the crappy stuff comes up around this time of year!!

blessings,
missa
 
E

ehtansky21

New member
We have actually been doing plant enzymes on top of the prescription enzymes and are seeing some weight gain. Our GI doc basically said he didn't think it would hurt to try and see what they do. Our boys are both severely PI, at a <15, so we are doing anything we can to compensate for those darn pancreases not working!!!
I know this does not address the diabetes aspect, but hope it gives you some ideas for the GI part.
Hugs to you!!! I think we need to just make Christmas at another part of the year...it seems like all the crappy stuff comes up around this time of year!!

blessings,
missa
 
E

ehtansky21

New member
We have actually been doing plant enzymes on top of the prescription enzymes and are seeing some weight gain. Our GI doc basically said he didn't think it would hurt to try and see what they do. Our boys are both severely PI, at a <15, so we are doing anything we can to compensate for those darn pancreases not working!!!
<br />I know this does not address the diabetes aspect, but hope it gives you some ideas for the GI part.
<br />Hugs to you!!! I think we need to just make Christmas at another part of the year...it seems like all the crappy stuff comes up around this time of year!!
<br />
<br />blessings,
<br />missa
 
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