***Raises Hand**** Neuro issues here!Are any of your kids on Topamax for the seizures? That is the only med that will control my son's seizures and it really is a godsend but the side effects are weight loss (don't need any help in that area!!!) and decreased sweating (has enough trouble in the heat without adding that to it). When my son was first diagnosed with cf I tried to link the Topamax to his high sweat test results, but didn't find anything online and the doctors assured me that was not the reason for the high sweat tests. And then additional testing revealed other things, so that blew my chance of denial out of the water.As to your original question about salty skin - he's not salty.
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curious...any other cf kids with no salty tasting skin?
- Thread starter sheilaherbst
- Start date
***Raises Hand**** Neuro issues here!Are any of your kids on Topamax for the seizures? That is the only med that will control my son's seizures and it really is a godsend but the side effects are weight loss (don't need any help in that area!!!) and decreased sweating (has enough trouble in the heat without adding that to it). When my son was first diagnosed with cf I tried to link the Topamax to his high sweat test results, but didn't find anything online and the doctors assured me that was not the reason for the high sweat tests. And then additional testing revealed other things, so that blew my chance of denial out of the water.As to your original question about salty skin - he's not salty.
***Raises Hand**** Neuro issues here!Are any of your kids on Topamax for the seizures? That is the only med that will control my son's seizures and it really is a godsend but the side effects are weight loss (don't need any help in that area!!!) and decreased sweating (has enough trouble in the heat without adding that to it). When my son was first diagnosed with cf I tried to link the Topamax to his high sweat test results, but didn't find anything online and the doctors assured me that was not the reason for the high sweat tests. And then additional testing revealed other things, so that blew my chance of denial out of the water.As to your original question about salty skin - he's not salty.
***Raises Hand**** Neuro issues here!Are any of your kids on Topamax for the seizures? That is the only med that will control my son's seizures and it really is a godsend but the side effects are weight loss (don't need any help in that area!!!) and decreased sweating (has enough trouble in the heat without adding that to it). When my son was first diagnosed with cf I tried to link the Topamax to his high sweat test results, but didn't find anything online and the doctors assured me that was not the reason for the high sweat tests. And then additional testing revealed other things, so that blew my chance of denial out of the water.As to your original question about salty skin - he's not salty.
***Raises Hand**** Neuro issues here!<p>Are any of your kids on Topamax for the seizures? That is the only med that will control my son's seizures and it really is a godsend but the side effects are weight loss (don't need any help in that area!!!) and decreased sweating (has enough trouble in the heat without adding that to it). When my son was first diagnosed with cf I tried to link the Topamax to his high sweat test results, but didn't find anything online and the doctors assured me that was not the reason for the high sweat tests. And then additional testing revealed other things, so that blew my chance of denial out of the water.<p>As to your original question about salty skin - he's not salty.
Emily is on Topamax, yes- and has been for close to 4 years. It's by far the best med we've come across for her seizures too- but also what gave her ped total tunnel vision for so long, I think, when it came to my concerns over her lack of weight gain. <img src="i/expressions/face-icon-small-mad.gif" border="0"> No matter how many times I told the ped SHE IS EATING, it's not killing her appetite... he just did not hear me. (Well then, if you are going to blame the meds, how come she didn't GAIN weight the entire yr she was on Depakote monotherapy? Huh? How about that? She was even on Periactin at one point and no gain... oh don't get me started. But no, it was the Topamax. Yeah, whatever.)
Anyway- I wondered about a sweat connection too- but was told it wouldn't affect the results of her tests as well. Fortunately, she is not affected by this as badly as some kids are (Shawn had an extreme reaction at age 8 when on Topamax and Zonegran together and did not sweat at all.
Anyway- I wondered about a sweat connection too- but was told it wouldn't affect the results of her tests as well. Fortunately, she is not affected by this as badly as some kids are (Shawn had an extreme reaction at age 8 when on Topamax and Zonegran together and did not sweat at all.
Emily is on Topamax, yes- and has been for close to 4 years. It's by far the best med we've come across for her seizures too- but also what gave her ped total tunnel vision for so long, I think, when it came to my concerns over her lack of weight gain. <img src="i/expressions/face-icon-small-mad.gif" border="0"> No matter how many times I told the ped SHE IS EATING, it's not killing her appetite... he just did not hear me. (Well then, if you are going to blame the meds, how come she didn't GAIN weight the entire yr she was on Depakote monotherapy? Huh? How about that? She was even on Periactin at one point and no gain... oh don't get me started. But no, it was the Topamax. Yeah, whatever.)
Anyway- I wondered about a sweat connection too- but was told it wouldn't affect the results of her tests as well. Fortunately, she is not affected by this as badly as some kids are (Shawn had an extreme reaction at age 8 when on Topamax and Zonegran together and did not sweat at all.
Anyway- I wondered about a sweat connection too- but was told it wouldn't affect the results of her tests as well. Fortunately, she is not affected by this as badly as some kids are (Shawn had an extreme reaction at age 8 when on Topamax and Zonegran together and did not sweat at all.
Emily is on Topamax, yes- and has been for close to 4 years. It's by far the best med we've come across for her seizures too- but also what gave her ped total tunnel vision for so long, I think, when it came to my concerns over her lack of weight gain. <img src="i/expressions/face-icon-small-mad.gif" border="0"> No matter how many times I told the ped SHE IS EATING, it's not killing her appetite... he just did not hear me. (Well then, if you are going to blame the meds, how come she didn't GAIN weight the entire yr she was on Depakote monotherapy? Huh? How about that? She was even on Periactin at one point and no gain... oh don't get me started. But no, it was the Topamax. Yeah, whatever.)
Anyway- I wondered about a sweat connection too- but was told it wouldn't affect the results of her tests as well. Fortunately, she is not affected by this as badly as some kids are (Shawn had an extreme reaction at age 8 when on Topamax and Zonegran together and did not sweat at all.
Anyway- I wondered about a sweat connection too- but was told it wouldn't affect the results of her tests as well. Fortunately, she is not affected by this as badly as some kids are (Shawn had an extreme reaction at age 8 when on Topamax and Zonegran together and did not sweat at all.
Emily is on Topamax, yes- and has been for close to 4 years. It's by far the best med we've come across for her seizures too- but also what gave her ped total tunnel vision for so long, I think, when it came to my concerns over her lack of weight gain. <img src="i/expressions/face-icon-small-mad.gif" border="0"> No matter how many times I told the ped SHE IS EATING, it's not killing her appetite... he just did not hear me. (Well then, if you are going to blame the meds, how come she didn't GAIN weight the entire yr she was on Depakote monotherapy? Huh? How about that? She was even on Periactin at one point and no gain... oh don't get me started. But no, it was the Topamax. Yeah, whatever.)
Anyway- I wondered about a sweat connection too- but was told it wouldn't affect the results of her tests as well. Fortunately, she is not affected by this as badly as some kids are (Shawn had an extreme reaction at age 8 when on Topamax and Zonegran together and did not sweat at all.
Anyway- I wondered about a sweat connection too- but was told it wouldn't affect the results of her tests as well. Fortunately, she is not affected by this as badly as some kids are (Shawn had an extreme reaction at age 8 when on Topamax and Zonegran together and did not sweat at all.
Emily is on Topamax, yes- and has been for close to 4 years. It's by far the best med we've come across for her seizures too- but also what gave her ped total tunnel vision for so long, I think, when it came to my concerns over her lack of weight gain. <img src="i/expressions/face-icon-small-mad.gif" border="0"> No matter how many times I told the ped SHE IS EATING, it's not killing her appetite... he just did not hear me. (Well then, if you are going to blame the meds, how come she didn't GAIN weight the entire yr she was on Depakote monotherapy? Huh? How about that? She was even on Periactin at one point and no gain... oh don't get me started. But no, it was the Topamax. Yeah, whatever.)
<br />
<br />Anyway- I wondered about a sweat connection too- but was told it wouldn't affect the results of her tests as well. Fortunately, she is not affected by this as badly as some kids are (Shawn had an extreme reaction at age 8 when on Topamax and Zonegran together and did not sweat at all.
<br />
<br />Anyway- I wondered about a sweat connection too- but was told it wouldn't affect the results of her tests as well. Fortunately, she is not affected by this as badly as some kids are (Shawn had an extreme reaction at age 8 when on Topamax and Zonegran together and did not sweat at all.
sheilaherbst
New member
Thanks to all who replied to my post while I was waiting for the results from our 2nd sweat test (first was insufficient collection)...got the results today: 12. We're so happy. I only wish everyone could get these same results for their kids! Thanks again...this forum kept me sane while waiting and would've been the first place I'd have turned if the results were positive to get started on treatment. I wish you all the best.
Sheila
Sheila
sheilaherbst
New member
Thanks to all who replied to my post while I was waiting for the results from our 2nd sweat test (first was insufficient collection)...got the results today: 12. We're so happy. I only wish everyone could get these same results for their kids! Thanks again...this forum kept me sane while waiting and would've been the first place I'd have turned if the results were positive to get started on treatment. I wish you all the best.
Sheila
Sheila
sheilaherbst
New member
Thanks to all who replied to my post while I was waiting for the results from our 2nd sweat test (first was insufficient collection)...got the results today: 12. We're so happy. I only wish everyone could get these same results for their kids! Thanks again...this forum kept me sane while waiting and would've been the first place I'd have turned if the results were positive to get started on treatment. I wish you all the best.
Sheila
Sheila
sheilaherbst
New member
Thanks to all who replied to my post while I was waiting for the results from our 2nd sweat test (first was insufficient collection)...got the results today: 12. We're so happy. I only wish everyone could get these same results for their kids! Thanks again...this forum kept me sane while waiting and would've been the first place I'd have turned if the results were positive to get started on treatment. I wish you all the best.
Sheila
Sheila
sheilaherbst
New member
Thanks to all who replied to my post while I was waiting for the results from our 2nd sweat test (first was insufficient collection)...got the results today: 12. We're so happy. I only wish everyone could get these same results for their kids! Thanks again...this forum kept me sane while waiting and would've been the first place I'd have turned if the results were positive to get started on treatment. I wish you all the best.
<br />Sheila
<br />Sheila
My dd is on Trileptal....have any of you had experience with this med? She has been doing great on is so far, has seemed to "wake up" and be more engaging!
Pam, how old was your son when he was diagnosed with CF? I was thinking that my son's neuro issues and meds, vitamins, supplements, etc., would be the cause of his high borderline sweat test too. We will find out more about the CF concerns tomorrow at CF clinic.
Harriet,I also kept telling my ds doctors that he eats like a horse but doesn't gain and they just give you the hand wave and shrug and say "it's the meds." I just wanted to scream! He eats!! He doesn't have a decreased appetite! FRustrating!
Pam, how old was your son when he was diagnosed with CF? I was thinking that my son's neuro issues and meds, vitamins, supplements, etc., would be the cause of his high borderline sweat test too. We will find out more about the CF concerns tomorrow at CF clinic.
Harriet,I also kept telling my ds doctors that he eats like a horse but doesn't gain and they just give you the hand wave and shrug and say "it's the meds." I just wanted to scream! He eats!! He doesn't have a decreased appetite! FRustrating!
My dd is on Trileptal....have any of you had experience with this med? She has been doing great on is so far, has seemed to "wake up" and be more engaging!
Pam, how old was your son when he was diagnosed with CF? I was thinking that my son's neuro issues and meds, vitamins, supplements, etc., would be the cause of his high borderline sweat test too. We will find out more about the CF concerns tomorrow at CF clinic.
Harriet,I also kept telling my ds doctors that he eats like a horse but doesn't gain and they just give you the hand wave and shrug and say "it's the meds." I just wanted to scream! He eats!! He doesn't have a decreased appetite! FRustrating!
Pam, how old was your son when he was diagnosed with CF? I was thinking that my son's neuro issues and meds, vitamins, supplements, etc., would be the cause of his high borderline sweat test too. We will find out more about the CF concerns tomorrow at CF clinic.
Harriet,I also kept telling my ds doctors that he eats like a horse but doesn't gain and they just give you the hand wave and shrug and say "it's the meds." I just wanted to scream! He eats!! He doesn't have a decreased appetite! FRustrating!
My dd is on Trileptal....have any of you had experience with this med? She has been doing great on is so far, has seemed to "wake up" and be more engaging!
Pam, how old was your son when he was diagnosed with CF? I was thinking that my son's neuro issues and meds, vitamins, supplements, etc., would be the cause of his high borderline sweat test too. We will find out more about the CF concerns tomorrow at CF clinic.
Harriet,I also kept telling my ds doctors that he eats like a horse but doesn't gain and they just give you the hand wave and shrug and say "it's the meds." I just wanted to scream! He eats!! He doesn't have a decreased appetite! FRustrating!
Pam, how old was your son when he was diagnosed with CF? I was thinking that my son's neuro issues and meds, vitamins, supplements, etc., would be the cause of his high borderline sweat test too. We will find out more about the CF concerns tomorrow at CF clinic.
Harriet,I also kept telling my ds doctors that he eats like a horse but doesn't gain and they just give you the hand wave and shrug and say "it's the meds." I just wanted to scream! He eats!! He doesn't have a decreased appetite! FRustrating!
My dd is on Trileptal....have any of you had experience with this med? She has been doing great on is so far, has seemed to "wake up" and be more engaging!
Pam, how old was your son when he was diagnosed with CF? I was thinking that my son's neuro issues and meds, vitamins, supplements, etc., would be the cause of his high borderline sweat test too. We will find out more about the CF concerns tomorrow at CF clinic.
Harriet,I also kept telling my ds doctors that he eats like a horse but doesn't gain and they just give you the hand wave and shrug and say "it's the meds." I just wanted to scream! He eats!! He doesn't have a decreased appetite! FRustrating!
Pam, how old was your son when he was diagnosed with CF? I was thinking that my son's neuro issues and meds, vitamins, supplements, etc., would be the cause of his high borderline sweat test too. We will find out more about the CF concerns tomorrow at CF clinic.
Harriet,I also kept telling my ds doctors that he eats like a horse but doesn't gain and they just give you the hand wave and shrug and say "it's the meds." I just wanted to scream! He eats!! He doesn't have a decreased appetite! FRustrating!
My dd is on Trileptal....have any of you had experience with this med? She has been doing great on is so far, has seemed to "wake up" and be more engaging!
<br />
<br />Pam, how old was your son when he was diagnosed with CF? I was thinking that my son's neuro issues and meds, vitamins, supplements, etc., would be the cause of his high borderline sweat test too. We will find out more about the CF concerns tomorrow at CF clinic.
<br />
<br />Harriet,I also kept telling my ds doctors that he eats like a horse but doesn't gain and they just give you the hand wave and shrug and say "it's the meds." I just wanted to scream! He eats!! He doesn't have a decreased appetite! FRustrating!
<br />
<br />Pam, how old was your son when he was diagnosed with CF? I was thinking that my son's neuro issues and meds, vitamins, supplements, etc., would be the cause of his high borderline sweat test too. We will find out more about the CF concerns tomorrow at CF clinic.
<br />
<br />Harriet,I also kept telling my ds doctors that he eats like a horse but doesn't gain and they just give you the hand wave and shrug and say "it's the meds." I just wanted to scream! He eats!! He doesn't have a decreased appetite! FRustrating!