44/43 sweat test results.......lots of questions???????

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BlessedbymyGirl36

New member
Carrie,
that is great news...keep it coming! That is so funny you call him your 'runt' Erin has a nickname since she was 3 months. We call her Boose or Boosie girl , Because of course when she was little she was always so small and petite and had to catch up in weight and such like a caboose (small) on the end of a train. Dunno if that makes sense but it's stuck for 11 years lol. We have Bailey the yellow lab then a year later we got Sydney , she is a full blood sister to bailey same mom and dad just the second litter. They are so cute because when erin is sick they tend to stay by her side where ever she is in the house.
Have a good one!
Nichole
 
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BlessedbymyGirl36

New member
Carrie,
that is great news...keep it coming! That is so funny you call him your 'runt' Erin has a nickname since she was 3 months. We call her Boose or Boosie girl , Because of course when she was little she was always so small and petite and had to catch up in weight and such like a caboose (small) on the end of a train. Dunno if that makes sense but it's stuck for 11 years lol. We have Bailey the yellow lab then a year later we got Sydney , she is a full blood sister to bailey same mom and dad just the second litter. They are so cute because when erin is sick they tend to stay by her side where ever she is in the house.
Have a good one!
Nichole
 
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clawson5104

New member
Well, nothing too much new here. Wade has appt. with gastro next week (31st) so i'm awaiting on how that goes. hopefully good. he is eating better. still has the "crappy" nose, not much cough. is making it thru about 10 minutes of "clapping" a day, which is pretty good for him. but is hating the albuterol treatments now. i literally have to hold him down. the pulmocort he doesn't mind. either that or he exhausts himself on the albuterol, not sure which. i still haven't all the results on the labs he last had, other than his allergy tests come back okay, they were blood, and i find it weird that he pukes when he eats shrimp if he has no allergy to it. i donno, doc says that may just be part of reflux. speaking of reflux,,,,gave him prevacid capsules....he's not even 2...but insurance wont pay for the switch. so they told me to mix them in something, he just wipes it off his tongue.....so that's not going good. said the other labs were in good shape so far, calcium a little low though. but he won't drink milk, barely eats icecream, and very little cheese. sooooo, to be expected. there were still some pending, so i plan on calling to find out if they got the results yet. just thought i would update.
 
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clawson5104

New member
Well, nothing too much new here. Wade has appt. with gastro next week (31st) so i'm awaiting on how that goes. hopefully good. he is eating better. still has the "crappy" nose, not much cough. is making it thru about 10 minutes of "clapping" a day, which is pretty good for him. but is hating the albuterol treatments now. i literally have to hold him down. the pulmocort he doesn't mind. either that or he exhausts himself on the albuterol, not sure which. i still haven't all the results on the labs he last had, other than his allergy tests come back okay, they were blood, and i find it weird that he pukes when he eats shrimp if he has no allergy to it. i donno, doc says that may just be part of reflux. speaking of reflux,,,,gave him prevacid capsules....he's not even 2...but insurance wont pay for the switch. so they told me to mix them in something, he just wipes it off his tongue.....so that's not going good. said the other labs were in good shape so far, calcium a little low though. but he won't drink milk, barely eats icecream, and very little cheese. sooooo, to be expected. there were still some pending, so i plan on calling to find out if they got the results yet. just thought i would update.
 
C

clawson5104

New member
Well, nothing too much new here. Wade has appt. with gastro next week (31st) so i'm awaiting on how that goes. hopefully good. he is eating better. still has the "crappy" nose, not much cough. is making it thru about 10 minutes of "clapping" a day, which is pretty good for him. but is hating the albuterol treatments now. i literally have to hold him down. the pulmocort he doesn't mind. either that or he exhausts himself on the albuterol, not sure which. i still haven't all the results on the labs he last had, other than his allergy tests come back okay, they were blood, and i find it weird that he pukes when he eats shrimp if he has no allergy to it. i donno, doc says that may just be part of reflux. speaking of reflux,,,,gave him prevacid capsules....he's not even 2...but insurance wont pay for the switch. so they told me to mix them in something, he just wipes it off his tongue.....so that's not going good. said the other labs were in good shape so far, calcium a little low though. but he won't drink milk, barely eats icecream, and very little cheese. sooooo, to be expected. there were still some pending, so i plan on calling to find out if they got the results yet. just thought i would update.
 
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BlessedbymyGirl36

New member
Carrie,
great that all is coming back well. With the albuterol treatments what kind of mask is he using. Alot of the doc's and or clinic's have masks for kids in the form of a fish/dinasour/animal. Erin really loved the fish when she was a tot. she'd look at it (cross eyed) sometimes lol and every now and then play with it like it was swimming then I'd say "Okay now on your mouth for a bit" so it was a good bargaining chip/distraction. When you mix the antacid with stuff what are you mixing it with? Maybe there is something else that would hide the texture of the beads? Good luck and keep us informed! <img src="i/expressions/face-icon-small-blush.gif" border="0">P God Bless, Nichole
 
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BlessedbymyGirl36

New member
Carrie,
great that all is coming back well. With the albuterol treatments what kind of mask is he using. Alot of the doc's and or clinic's have masks for kids in the form of a fish/dinasour/animal. Erin really loved the fish when she was a tot. she'd look at it (cross eyed) sometimes lol and every now and then play with it like it was swimming then I'd say "Okay now on your mouth for a bit" so it was a good bargaining chip/distraction. When you mix the antacid with stuff what are you mixing it with? Maybe there is something else that would hide the texture of the beads? Good luck and keep us informed! <img src="i/expressions/face-icon-small-blush.gif" border="0">P God Bless, Nichole
 
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BlessedbymyGirl36

New member
Carrie,
great that all is coming back well. With the albuterol treatments what kind of mask is he using. Alot of the doc's and or clinic's have masks for kids in the form of a fish/dinasour/animal. Erin really loved the fish when she was a tot. she'd look at it (cross eyed) sometimes lol and every now and then play with it like it was swimming then I'd say "Okay now on your mouth for a bit" so it was a good bargaining chip/distraction. When you mix the antacid with stuff what are you mixing it with? Maybe there is something else that would hide the texture of the beads? Good luck and keep us informed! <img src="i/expressions/face-icon-small-blush.gif" border="0">P God Bless, Nichole
 
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clawson5104

New member
thank you for ur responses and advice.

i talked to wade's pulmonologist today. his stool elastese test came back okay. and she had previously told me his vitamin testing had been coming back good so far, but today told me they're back, and vitamin A was super low. so he does not seem to be absorbing that one. she said the reference was 108, his was in the twenties. she said the gastroenterologist will do a series of tests on him, and figure out why he is malabsorbing. i asked her if she felt he was definite on the CF, she said yes, just a very mild form of it. which could stay the same, or worsen with age.
i previously asked her if we were done with genetic testing on him, she said yes until new tests come out that can identify more mutations. today she tells me there is a new one, but is being used mainly for more severe cases, and doesn't know if wade would qualify. so she is gonna put him on the list and see what happens. personally i figured if there was a new test out i'd found out on here first!!!lol. but that's what she said. but he will not go thru ct,or the nasal test till he is older unless he becomes very sick, she says.

i donno, i'm glad i know this much though, which is more than i knew yesterday.
and i suppose they will start sweat testing my other 3 boys by july. they wanna get wade straightened out first i suppose.

so thanks everybody, and i was wondering, i know cf'ers have vitamin problems, do any of u have just issues with only one?????

thanks again
 
C

clawson5104

New member
thank you for ur responses and advice.

i talked to wade's pulmonologist today. his stool elastese test came back okay. and she had previously told me his vitamin testing had been coming back good so far, but today told me they're back, and vitamin A was super low. so he does not seem to be absorbing that one. she said the reference was 108, his was in the twenties. she said the gastroenterologist will do a series of tests on him, and figure out why he is malabsorbing. i asked her if she felt he was definite on the CF, she said yes, just a very mild form of it. which could stay the same, or worsen with age.
i previously asked her if we were done with genetic testing on him, she said yes until new tests come out that can identify more mutations. today she tells me there is a new one, but is being used mainly for more severe cases, and doesn't know if wade would qualify. so she is gonna put him on the list and see what happens. personally i figured if there was a new test out i'd found out on here first!!!lol. but that's what she said. but he will not go thru ct,or the nasal test till he is older unless he becomes very sick, she says.

i donno, i'm glad i know this much though, which is more than i knew yesterday.
and i suppose they will start sweat testing my other 3 boys by july. they wanna get wade straightened out first i suppose.

so thanks everybody, and i was wondering, i know cf'ers have vitamin problems, do any of u have just issues with only one?????

thanks again
 
C

clawson5104

New member
thank you for ur responses and advice.

i talked to wade's pulmonologist today. his stool elastese test came back okay. and she had previously told me his vitamin testing had been coming back good so far, but today told me they're back, and vitamin A was super low. so he does not seem to be absorbing that one. she said the reference was 108, his was in the twenties. she said the gastroenterologist will do a series of tests on him, and figure out why he is malabsorbing. i asked her if she felt he was definite on the CF, she said yes, just a very mild form of it. which could stay the same, or worsen with age.
i previously asked her if we were done with genetic testing on him, she said yes until new tests come out that can identify more mutations. today she tells me there is a new one, but is being used mainly for more severe cases, and doesn't know if wade would qualify. so she is gonna put him on the list and see what happens. personally i figured if there was a new test out i'd found out on here first!!!lol. but that's what she said. but he will not go thru ct,or the nasal test till he is older unless he becomes very sick, she says.

i donno, i'm glad i know this much though, which is more than i knew yesterday.
and i suppose they will start sweat testing my other 3 boys by july. they wanna get wade straightened out first i suppose.

so thanks everybody, and i was wondering, i know cf'ers have vitamin problems, do any of u have just issues with only one?????

thanks again
 
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NoExcuses

New member
Usually CFers have issues with fat-soluable vitamis: A, D, E and K

And just so you're aware, many of us were "mild" CFers when we were first diagnosed. This is a progressive disease - for everyone. I hope the doc doens't give you the wrong impression like some physicians do in terms of the severity of this disease.
 
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NoExcuses

New member
Usually CFers have issues with fat-soluable vitamis: A, D, E and K

And just so you're aware, many of us were "mild" CFers when we were first diagnosed. This is a progressive disease - for everyone. I hope the doc doens't give you the wrong impression like some physicians do in terms of the severity of this disease.
 
N

NoExcuses

New member
Usually CFers have issues with fat-soluable vitamis: A, D, E and K

And just so you're aware, many of us were "mild" CFers when we were first diagnosed. This is a progressive disease - for everyone. I hope the doc doens't give you the wrong impression like some physicians do in terms of the severity of this disease.
 
C

clawson5104

New member
yes, i am aware CF is progressive, wade is having mild symptoms now, and yes will probably be worse in some or all ways as he gets older. I know there are issues with fat soluble vitamins, but was wondering if any of you had issues with ONLY one, or do most of you have issues with all of them? thanks again
 
C

clawson5104

New member
yes, i am aware CF is progressive, wade is having mild symptoms now, and yes will probably be worse in some or all ways as he gets older. I know there are issues with fat soluble vitamins, but was wondering if any of you had issues with ONLY one, or do most of you have issues with all of them? thanks again
 
C

clawson5104

New member
yes, i am aware CF is progressive, wade is having mild symptoms now, and yes will probably be worse in some or all ways as he gets older. I know there are issues with fat soluble vitamins, but was wondering if any of you had issues with ONLY one, or do most of you have issues with all of them? thanks again
 
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