Post by Amy Lombardi on Mar 31, 2009 11:55:37 GMT -5
Subject: new issues
Name: Sue Inks
Date Posted: Nov 5, 08 - 4:33 PM
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Instant Messenger: trappedonland
Message: The last few months, Sarah's (14 yrs old, JNCL) blood platelet count has been slowly dropping. It is not dangerously low but her Dr. seems concerned enough to order ongoing blood tests to monitor it. She hasn't yet given me an explanaition as to why it might be happening. Her hair is falling out. This last week she is having vivid hallucinations and is often disoriented. She becomes very pale, pants and complains she is hot, she will be sweating profusely but her skin will be very cool, clammy to the touch..like someone in shock. I'm taking her to the neurologist tomorrow, but I was wandering if anyone had any ideas about this?
Thanks, Sue Inks
Name: Corrina Dahl
Date Posted: Nov 6, 08 - 6:25 AM
Message: Is she on depakote? I think I heard somewhere that depakote can cause a platelet drop. I know Clifford's nuerologist watches his platelet count as well as his liver enzymes.
I hope Sarah feels better soon.
Name: nori
Date Posted: Nov 6, 08 - 7:38 AM
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Message: Depakote can definetly cause low platelets and the sweating and clamminess is probably the brain stem starting to be affected and then the body has trouble controlling its temperature. My boys had hallucinations early in the disease but not in their teens. The hair loss is a mystery. Maybe if she is on depakote and her levels are high or it is affecting her liver it could cause hair loss. My boys lost some hair but it was in their twenties and baldness runs in our family so I thought nothing of it.
Good luck! Hopefully your neurologist can help, we never had a neurologist that knew didely
Name: katarina Calderon
Date Posted: Nov 6, 08 - 7:54 AM
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Message: Depakote can cause hair loss too, as well as the other side effects!
Name: Sue Inks
Date Posted: Nov 6, 08 - 8:13 AM
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Instant Messenger: trappedonland
Message: Sarah is on depakote..so thanks for that information. Her neurologist is new and she seems very competent and caring, plus she has another patient with JNCL (how often do you see that??)She is going to be calling me back this morning and the depakote will be the first thing I bring up. Thank you so much for the input!
Name: lincldad
Date Posted: Nov 7, 08 - 1:49 AM
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Message: After about six months of hair loss (i think it was more hair breakage) it all grew back thick and nice. Still on depakote. I'm not sure if it was the depakote or not
Name: Sue Inks
Date Posted: Nov 7, 08 - 8:11 AM
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Instant Messenger: trappedonland
Message: yeah..that's what is happening with Sarah...breaks off..loooks like she had a very bad haircut. Yesterday her dr. advised that Depakote was the likely culprit and suggested a copper/zinc supplement.
Name: lincldad
Date Posted: Nov 9, 08 - 4:33 AM
Email: Click here to Email
Message: I also think Lance at BDSRA had suggested (our doc agreed) Levocarnitine supplement because of the depakote.
Name: Peggy D.
Date Posted: Nov 11, 08 - 8:35 AM
Message: My son did not have hair loss, but did take Depakote and then changed to Depakene via the feeding tube. He was on Carnitor from day one because of the Depapkene. It's been some years and all I can remember was that it was to help protect the liver function from the effects of depakote.
Peggy D.
Name: Sue Inks
Date Posted: Nov 5, 08 - 4:33 PM
Email: Click here to Email
Instant Messenger: trappedonland
Message: The last few months, Sarah's (14 yrs old, JNCL) blood platelet count has been slowly dropping. It is not dangerously low but her Dr. seems concerned enough to order ongoing blood tests to monitor it. She hasn't yet given me an explanaition as to why it might be happening. Her hair is falling out. This last week she is having vivid hallucinations and is often disoriented. She becomes very pale, pants and complains she is hot, she will be sweating profusely but her skin will be very cool, clammy to the touch..like someone in shock. I'm taking her to the neurologist tomorrow, but I was wandering if anyone had any ideas about this?
Thanks, Sue Inks
Name: Corrina Dahl
Date Posted: Nov 6, 08 - 6:25 AM
Message: Is she on depakote? I think I heard somewhere that depakote can cause a platelet drop. I know Clifford's nuerologist watches his platelet count as well as his liver enzymes.
I hope Sarah feels better soon.
Name: nori
Date Posted: Nov 6, 08 - 7:38 AM
Email: Click here to Email
Message: Depakote can definetly cause low platelets and the sweating and clamminess is probably the brain stem starting to be affected and then the body has trouble controlling its temperature. My boys had hallucinations early in the disease but not in their teens. The hair loss is a mystery. Maybe if she is on depakote and her levels are high or it is affecting her liver it could cause hair loss. My boys lost some hair but it was in their twenties and baldness runs in our family so I thought nothing of it.
Good luck! Hopefully your neurologist can help, we never had a neurologist that knew didely
Name: katarina Calderon
Date Posted: Nov 6, 08 - 7:54 AM
Email: Click here to Email
Message: Depakote can cause hair loss too, as well as the other side effects!
Name: Sue Inks
Date Posted: Nov 6, 08 - 8:13 AM
Email: Click here to Email
Instant Messenger: trappedonland
Message: Sarah is on depakote..so thanks for that information. Her neurologist is new and she seems very competent and caring, plus she has another patient with JNCL (how often do you see that??)She is going to be calling me back this morning and the depakote will be the first thing I bring up. Thank you so much for the input!
Name: lincldad
Date Posted: Nov 7, 08 - 1:49 AM
Email: Click here to Email
Message: After about six months of hair loss (i think it was more hair breakage) it all grew back thick and nice. Still on depakote. I'm not sure if it was the depakote or not
Name: Sue Inks
Date Posted: Nov 7, 08 - 8:11 AM
Email: Click here to Email
Instant Messenger: trappedonland
Message: yeah..that's what is happening with Sarah...breaks off..loooks like she had a very bad haircut. Yesterday her dr. advised that Depakote was the likely culprit and suggested a copper/zinc supplement.
Name: lincldad
Date Posted: Nov 9, 08 - 4:33 AM
Email: Click here to Email
Message: I also think Lance at BDSRA had suggested (our doc agreed) Levocarnitine supplement because of the depakote.
Name: Peggy D.
Date Posted: Nov 11, 08 - 8:35 AM
Message: My son did not have hair loss, but did take Depakote and then changed to Depakene via the feeding tube. He was on Carnitor from day one because of the Depapkene. It's been some years and all I can remember was that it was to help protect the liver function from the effects of depakote.
Peggy D.