Two odd questions...

stringbean · Jun 7, 2009

I was chatting with someone whose son is currently being tested for CF. I mentioned that my daughter simply can't handle medication. All the inhalers that we tried made her extremely hyper -- or in the case of the steroid one, extremely angry. She can't take antihistimine either -- again, she was EXTREMELY hyper. We've tried medications to help her appetite and sleeping and everything has made her crazed and brought me to tears...

Anyway, the woman I was chatting with mentioned that the same thing happens to her son and she was told (by the head of the CF department at a leading children's hospital) that the inability to properly process medication was another indication of CF. Have any of you noticed this with your kids?

And one more really weird and silly question... Are your kids blonde? When we were first going through the testing and I was going insane with worry, I got into every website I could find and people posted photos of their kids -- and there were a lot of blondes. I know it's only anecdotal, but the number of blonde kids I've seen (photos and when we went for testing) is way out of proportion to the percentage in the population. Only 5% of the American population is blonde (a friend sent me some statistics when we lived in Japan and I mentioned how out of place I felt) and I'd say that over 50% of the photos I saw depicted blonde kids. I know it doesn't mean a blessed thing, but for some reason it really struck me how many kids with CF have my daughter's coloring -- or at least those kids whose pictures are posted. Just curious...

stringbean · Jun 7, 2009

I was chatting with someone whose son is currently being tested for CF. I mentioned that my daughter simply can't handle medication. All the inhalers that we tried made her extremely hyper -- or in the case of the steroid one, extremely angry. She can't take antihistimine either -- again, she was EXTREMELY hyper. We've tried medications to help her appetite and sleeping and everything has made her crazed and brought me to tears...

Anyway, the woman I was chatting with mentioned that the same thing happens to her son and she was told (by the head of the CF department at a leading children's hospital) that the inability to properly process medication was another indication of CF. Have any of you noticed this with your kids?

And one more really weird and silly question... Are your kids blonde? When we were first going through the testing and I was going insane with worry, I got into every website I could find and people posted photos of their kids -- and there were a lot of blondes. I know it's only anecdotal, but the number of blonde kids I've seen (photos and when we went for testing) is way out of proportion to the percentage in the population. Only 5% of the American population is blonde (a friend sent me some statistics when we lived in Japan and I mentioned how out of place I felt) and I'd say that over 50% of the photos I saw depicted blonde kids. I know it doesn't mean a blessed thing, but for some reason it really struck me how many kids with CF have my daughter's coloring -- or at least those kids whose pictures are posted. Just curious...

stringbean · Jun 7, 2009

I was chatting with someone whose son is currently being tested for CF. I mentioned that my daughter simply can't handle medication. All the inhalers that we tried made her extremely hyper -- or in the case of the steroid one, extremely angry. She can't take antihistimine either -- again, she was EXTREMELY hyper. We've tried medications to help her appetite and sleeping and everything has made her crazed and brought me to tears...

Anyway, the woman I was chatting with mentioned that the same thing happens to her son and she was told (by the head of the CF department at a leading children's hospital) that the inability to properly process medication was another indication of CF. Have any of you noticed this with your kids?

And one more really weird and silly question... Are your kids blonde? When we were first going through the testing and I was going insane with worry, I got into every website I could find and people posted photos of their kids -- and there were a lot of blondes. I know it's only anecdotal, but the number of blonde kids I've seen (photos and when we went for testing) is way out of proportion to the percentage in the population. Only 5% of the American population is blonde (a friend sent me some statistics when we lived in Japan and I mentioned how out of place I felt) and I'd say that over 50% of the photos I saw depicted blonde kids. I know it doesn't mean a blessed thing, but for some reason it really struck me how many kids with CF have my daughter's coloring -- or at least those kids whose pictures are posted. Just curious...

stringbean · Jun 7, 2009

I was chatting with someone whose son is currently being tested for CF. I mentioned that my daughter simply can't handle medication. All the inhalers that we tried made her extremely hyper -- or in the case of the steroid one, extremely angry. She can't take antihistimine either -- again, she was EXTREMELY hyper. We've tried medications to help her appetite and sleeping and everything has made her crazed and brought me to tears...

Anyway, the woman I was chatting with mentioned that the same thing happens to her son and she was told (by the head of the CF department at a leading children's hospital) that the inability to properly process medication was another indication of CF. Have any of you noticed this with your kids?

And one more really weird and silly question... Are your kids blonde? When we were first going through the testing and I was going insane with worry, I got into every website I could find and people posted photos of their kids -- and there were a lot of blondes. I know it's only anecdotal, but the number of blonde kids I've seen (photos and when we went for testing) is way out of proportion to the percentage in the population. Only 5% of the American population is blonde (a friend sent me some statistics when we lived in Japan and I mentioned how out of place I felt) and I'd say that over 50% of the photos I saw depicted blonde kids. I know it doesn't mean a blessed thing, but for some reason it really struck me how many kids with CF have my daughter's coloring -- or at least those kids whose pictures are posted. Just curious...

stringbean · Jun 7, 2009

I was chatting with someone whose son is currently being tested for CF. I mentioned that my daughter simply can't handle medication. All the inhalers that we tried made her extremely hyper -- or in the case of the steroid one, extremely angry. She can't take antihistimine either -- again, she was EXTREMELY hyper. We've tried medications to help her appetite and sleeping and everything has made her crazed and brought me to tears...
 
 Anyway, the woman I was chatting with mentioned that the same thing happens to her son and she was told (by the head of the CF department at a leading children's hospital) that the inability to properly process medication was another indication of CF. Have any of you noticed this with your kids?
 
 And one more really weird and silly question... Are your kids blonde? When we were first going through the testing and I was going insane with worry, I got into every website I could find and people posted photos of their kids -- and there were a lot of blondes. I know it's only anecdotal, but the number of blonde kids I've seen (photos and when we went for testing) is way out of proportion to the percentage in the population. Only 5% of the American population is blonde (a friend sent me some statistics when we lived in Japan and I mentioned how out of place I felt) and I'd say that over 50% of the photos I saw depicted blonde kids. I know it doesn't mean a blessed thing, but for some reason it really struck me how many kids with CF have my daughter's coloring -- or at least those kids whose pictures are posted. Just curious...

sdelorenzo · Jun 7, 2009

I think the reason you see a number of blondes has to do with the ethnicity of those who are likely to carry the cf gene. A chart in David Orenstein's book describes that one in 25 white people in America carry the gene, but only one in 90,000 Asian Americans carry the gene.
Sharon, mom of Sophia, 7 and Jack, 5 both with cf, Grant, 4 months no cf

sdelorenzo · Jun 7, 2009

I think the reason you see a number of blondes has to do with the ethnicity of those who are likely to carry the cf gene. A chart in David Orenstein's book describes that one in 25 white people in America carry the gene, but only one in 90,000 Asian Americans carry the gene.
Sharon, mom of Sophia, 7 and Jack, 5 both with cf, Grant, 4 months no cf

sdelorenzo · Jun 7, 2009

I think the reason you see a number of blondes has to do with the ethnicity of those who are likely to carry the cf gene. A chart in David Orenstein's book describes that one in 25 white people in America carry the gene, but only one in 90,000 Asian Americans carry the gene.
Sharon, mom of Sophia, 7 and Jack, 5 both with cf, Grant, 4 months no cf

sdelorenzo · Jun 7, 2009

I think the reason you see a number of blondes has to do with the ethnicity of those who are likely to carry the cf gene. A chart in David Orenstein's book describes that one in 25 white people in America carry the gene, but only one in 90,000 Asian Americans carry the gene.
Sharon, mom of Sophia, 7 and Jack, 5 both with cf, Grant, 4 months no cf

sdelorenzo · Jun 7, 2009

I think the reason you see a number of blondes has to do with the ethnicity of those who are likely to carry the cf gene. A chart in David Orenstein's book describes that one in 25 white people in America carry the gene, but only one in 90,000 Asian Americans carry the gene.
 Sharon, mom of Sophia, 7 and Jack, 5 both with cf, Grant, 4 months no cf

valigirl21 · Jun 10, 2009

Actually that happens to my son as well, but he has Autism and ADHD. Depending on the meds used will determine how Noah is affected. Anything w/ dyes, lots of sugar, drugs that cross the blood/brain barrier (such as some bronchodilators), and ALL steroids will have him OFF THE CHAIN CRAZY! The meds he takes to control symptoms of the AU and ADHD help when it comes to some of the stuff like the antihistimines and preventive inhalers, but not w/ steroids or Albuterol. I guess my question is, is it possible your daughter has a hyperactivity issue? No offense intended, just wondering if it occurs outside that issue to other children.

valigirl21 · Jun 10, 2009

Actually that happens to my son as well, but he has Autism and ADHD. Depending on the meds used will determine how Noah is affected. Anything w/ dyes, lots of sugar, drugs that cross the blood/brain barrier (such as some bronchodilators), and ALL steroids will have him OFF THE CHAIN CRAZY! The meds he takes to control symptoms of the AU and ADHD help when it comes to some of the stuff like the antihistimines and preventive inhalers, but not w/ steroids or Albuterol. I guess my question is, is it possible your daughter has a hyperactivity issue? No offense intended, just wondering if it occurs outside that issue to other children.

valigirl21 · Jun 10, 2009

Actually that happens to my son as well, but he has Autism and ADHD. Depending on the meds used will determine how Noah is affected. Anything w/ dyes, lots of sugar, drugs that cross the blood/brain barrier (such as some bronchodilators), and ALL steroids will have him OFF THE CHAIN CRAZY! The meds he takes to control symptoms of the AU and ADHD help when it comes to some of the stuff like the antihistimines and preventive inhalers, but not w/ steroids or Albuterol. I guess my question is, is it possible your daughter has a hyperactivity issue? No offense intended, just wondering if it occurs outside that issue to other children.

valigirl21 · Jun 10, 2009

Actually that happens to my son as well, but he has Autism and ADHD. Depending on the meds used will determine how Noah is affected. Anything w/ dyes, lots of sugar, drugs that cross the blood/brain barrier (such as some bronchodilators), and ALL steroids will have him OFF THE CHAIN CRAZY! The meds he takes to control symptoms of the AU and ADHD help when it comes to some of the stuff like the antihistimines and preventive inhalers, but not w/ steroids or Albuterol. I guess my question is, is it possible your daughter has a hyperactivity issue? No offense intended, just wondering if it occurs outside that issue to other children.

valigirl21 · Jun 10, 2009

Actually that happens to my son as well, but he has Autism and ADHD. Depending on the meds used will determine how Noah is affected. Anything w/ dyes, lots of sugar, drugs that cross the blood/brain barrier (such as some bronchodilators), and ALL steroids will have him OFF THE CHAIN CRAZY! The meds he takes to control symptoms of the AU and ADHD help when it comes to some of the stuff like the antihistimines and preventive inhalers, but not w/ steroids or Albuterol. I guess my question is, is it possible your daughter has a hyperactivity issue? No offense intended, just wondering if it occurs outside that issue to other children.

stringbean · Jun 10, 2009

Valerie,
My daughter definitely has a hyperactivity issue. I've asked the doctor that since a kid can have ADD with just the attention problem, is it possible to be HDD with just the hyperactivity part? She used to spin in circles constantly -- she wore a hole in her knees of her brand new flannel pajamas in just three weeks! But from the first moment she took enzymes, she calmed down. All the weird shaking and spinning was gone. I told her gastroenterologist that she's a completely different kid since discovering/treating her PI and he suggested that it could be metabolic. She's still hyper, but more of an ADHD kind of hyper than 40 shades of crazy hyper.

I've taken away food coloring and most sugar products and it has helped. But some days it is hard to get her to eat a snack and I can see an instant increase in her hyperactivity. She also increases her activity if she's tired. I've heard that when kids get tired, they may actually relax a little bit, maybe sit for a while -- but not my kid. She is really happy, but if we harnessed that energy, she could light up Las Vegas...

She's on Concerta and that has worked for her, but almost every other medication has done something odd to her. I've been careful about antihistimines, so we couldn't do the meds to increase her appetite. I knew that inhalers could increase hyperactivity -- but I wasn't prepared at all for the reaction that I got from two of them. And I just sat down and sobbed when I saw her anger on the steroid.

Last week the doctor prescribed Prevacid and the first day was fabulous, the second made her stomach "jumpy", the third had her burping up some stuff, and on the fourth she vomited. We stopped for a day and she was fine, and the process seemed to start over again we we started the medication again. The doctor switched her over to prilosec today, so we'll see if that's any better.

It's just so weird how all kinds of different medications seem to affect her. So I was just curious about anyone else's experiences when I was told that the inability to process medicine was another sign of CF... I wondered if anyone else found that to be true. I absolutely put her reactions in more of the ADHD realm than CF.

But the CF comment from a doctor and my daughter's reaction to Prevacid (that has nothing to do with hyperactivity) made me wonder if I was attributing the reactions to the wrong thing...

Thanks for letting me know your experiences. I still think hyperactivity -- but the Prevacid has me totally weirded out at this point!

stringbean · Jun 10, 2009

Valerie,
My daughter definitely has a hyperactivity issue. I've asked the doctor that since a kid can have ADD with just the attention problem, is it possible to be HDD with just the hyperactivity part? She used to spin in circles constantly -- she wore a hole in her knees of her brand new flannel pajamas in just three weeks! But from the first moment she took enzymes, she calmed down. All the weird shaking and spinning was gone. I told her gastroenterologist that she's a completely different kid since discovering/treating her PI and he suggested that it could be metabolic. She's still hyper, but more of an ADHD kind of hyper than 40 shades of crazy hyper.

I've taken away food coloring and most sugar products and it has helped. But some days it is hard to get her to eat a snack and I can see an instant increase in her hyperactivity. She also increases her activity if she's tired. I've heard that when kids get tired, they may actually relax a little bit, maybe sit for a while -- but not my kid. She is really happy, but if we harnessed that energy, she could light up Las Vegas...

She's on Concerta and that has worked for her, but almost every other medication has done something odd to her. I've been careful about antihistimines, so we couldn't do the meds to increase her appetite. I knew that inhalers could increase hyperactivity -- but I wasn't prepared at all for the reaction that I got from two of them. And I just sat down and sobbed when I saw her anger on the steroid.

Last week the doctor prescribed Prevacid and the first day was fabulous, the second made her stomach "jumpy", the third had her burping up some stuff, and on the fourth she vomited. We stopped for a day and she was fine, and the process seemed to start over again we we started the medication again. The doctor switched her over to prilosec today, so we'll see if that's any better.

It's just so weird how all kinds of different medications seem to affect her. So I was just curious about anyone else's experiences when I was told that the inability to process medicine was another sign of CF... I wondered if anyone else found that to be true. I absolutely put her reactions in more of the ADHD realm than CF.

But the CF comment from a doctor and my daughter's reaction to Prevacid (that has nothing to do with hyperactivity) made me wonder if I was attributing the reactions to the wrong thing...

Thanks for letting me know your experiences. I still think hyperactivity -- but the Prevacid has me totally weirded out at this point!

stringbean · Jun 10, 2009

Valerie,
My daughter definitely has a hyperactivity issue. I've asked the doctor that since a kid can have ADD with just the attention problem, is it possible to be HDD with just the hyperactivity part? She used to spin in circles constantly -- she wore a hole in her knees of her brand new flannel pajamas in just three weeks! But from the first moment she took enzymes, she calmed down. All the weird shaking and spinning was gone. I told her gastroenterologist that she's a completely different kid since discovering/treating her PI and he suggested that it could be metabolic. She's still hyper, but more of an ADHD kind of hyper than 40 shades of crazy hyper.

I've taken away food coloring and most sugar products and it has helped. But some days it is hard to get her to eat a snack and I can see an instant increase in her hyperactivity. She also increases her activity if she's tired. I've heard that when kids get tired, they may actually relax a little bit, maybe sit for a while -- but not my kid. She is really happy, but if we harnessed that energy, she could light up Las Vegas...

She's on Concerta and that has worked for her, but almost every other medication has done something odd to her. I've been careful about antihistimines, so we couldn't do the meds to increase her appetite. I knew that inhalers could increase hyperactivity -- but I wasn't prepared at all for the reaction that I got from two of them. And I just sat down and sobbed when I saw her anger on the steroid.

Last week the doctor prescribed Prevacid and the first day was fabulous, the second made her stomach "jumpy", the third had her burping up some stuff, and on the fourth she vomited. We stopped for a day and she was fine, and the process seemed to start over again we we started the medication again. The doctor switched her over to prilosec today, so we'll see if that's any better.

It's just so weird how all kinds of different medications seem to affect her. So I was just curious about anyone else's experiences when I was told that the inability to process medicine was another sign of CF... I wondered if anyone else found that to be true. I absolutely put her reactions in more of the ADHD realm than CF.

But the CF comment from a doctor and my daughter's reaction to Prevacid (that has nothing to do with hyperactivity) made me wonder if I was attributing the reactions to the wrong thing...

Thanks for letting me know your experiences. I still think hyperactivity -- but the Prevacid has me totally weirded out at this point!

stringbean · Jun 10, 2009

Valerie,
My daughter definitely has a hyperactivity issue. I've asked the doctor that since a kid can have ADD with just the attention problem, is it possible to be HDD with just the hyperactivity part? She used to spin in circles constantly -- she wore a hole in her knees of her brand new flannel pajamas in just three weeks! But from the first moment she took enzymes, she calmed down. All the weird shaking and spinning was gone. I told her gastroenterologist that she's a completely different kid since discovering/treating her PI and he suggested that it could be metabolic. She's still hyper, but more of an ADHD kind of hyper than 40 shades of crazy hyper.

I've taken away food coloring and most sugar products and it has helped. But some days it is hard to get her to eat a snack and I can see an instant increase in her hyperactivity. She also increases her activity if she's tired. I've heard that when kids get tired, they may actually relax a little bit, maybe sit for a while -- but not my kid. She is really happy, but if we harnessed that energy, she could light up Las Vegas...

She's on Concerta and that has worked for her, but almost every other medication has done something odd to her. I've been careful about antihistimines, so we couldn't do the meds to increase her appetite. I knew that inhalers could increase hyperactivity -- but I wasn't prepared at all for the reaction that I got from two of them. And I just sat down and sobbed when I saw her anger on the steroid.

Last week the doctor prescribed Prevacid and the first day was fabulous, the second made her stomach "jumpy", the third had her burping up some stuff, and on the fourth she vomited. We stopped for a day and she was fine, and the process seemed to start over again we we started the medication again. The doctor switched her over to prilosec today, so we'll see if that's any better.

It's just so weird how all kinds of different medications seem to affect her. So I was just curious about anyone else's experiences when I was told that the inability to process medicine was another sign of CF... I wondered if anyone else found that to be true. I absolutely put her reactions in more of the ADHD realm than CF.

But the CF comment from a doctor and my daughter's reaction to Prevacid (that has nothing to do with hyperactivity) made me wonder if I was attributing the reactions to the wrong thing...

Thanks for letting me know your experiences. I still think hyperactivity -- but the Prevacid has me totally weirded out at this point!

stringbean · Jun 10, 2009

Valerie,
 My daughter definitely has a hyperactivity issue. I've asked the doctor that since a kid can have ADD with just the attention problem, is it possible to be HDD with just the hyperactivity part? She used to spin in circles constantly -- she wore a hole in her knees of her brand new flannel pajamas in just three weeks! But from the first moment she took enzymes, she calmed down. All the weird shaking and spinning was gone. I told her gastroenterologist that she's a completely different kid since discovering/treating her PI and he suggested that it could be metabolic. She's still hyper, but more of an ADHD kind of hyper than 40 shades of crazy hyper.
 
 I've taken away food coloring and most sugar products and it has helped. But some days it is hard to get her to eat a snack and I can see an instant increase in her hyperactivity. She also increases her activity if she's tired. I've heard that when kids get tired, they may actually relax a little bit, maybe sit for a while -- but not my kid. She is really happy, but if we harnessed that energy, she could light up Las Vegas...
 
 She's on Concerta and that has worked for her, but almost every other medication has done something odd to her. I've been careful about antihistimines, so we couldn't do the meds to increase her appetite. I knew that inhalers could increase hyperactivity -- but I wasn't prepared at all for the reaction that I got from two of them. And I just sat down and sobbed when I saw her anger on the steroid.
 
 Last week the doctor prescribed Prevacid and the first day was fabulous, the second made her stomach "jumpy", the third had her burping up some stuff, and on the fourth she vomited. We stopped for a day and she was fine, and the process seemed to start over again we we started the medication again. The doctor switched her over to prilosec today, so we'll see if that's any better.
 
 It's just so weird how all kinds of different medications seem to affect her. So I was just curious about anyone else's experiences when I was told that the inability to process medicine was another sign of CF... I wondered if anyone else found that to be true. I absolutely put her reactions in more of the ADHD realm than CF.
 
 But the CF comment from a doctor and my daughter's reaction to Prevacid (that has nothing to do with hyperactivity) made me wonder if I was attributing the reactions to the wrong thing...
 
 Thanks for letting me know your experiences. I still think hyperactivity -- but the Prevacid has me totally weirded out at this point!

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