Post by Amy Lombardi on Apr 1, 2009 8:37:11 GMT -5
Subject: pain
Name: Karen
Date Posted: Dec 22, 08 - 2:42 PM
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Message: My daughter, who is 27 with a variant of JNCL, has begun experiencing pain. She also doesn't eat much. I don't know if that's because her body hurts, or if she is losing her appetite. She takes Keppra for seizure control. Can anyone tell me if pain is a common symptom, and what can be done about it? We are suffering through some awfully cold weather, and I have wondered if that can be a contributing factor. Because her speech is so poor, we can't understand what type of pain she is feeling, and if it goes away under certain circumstances. Has anyone gone through this, and if so, what were you able to do about it?
Thanks for your input. Karen
Name: Darlene Royalty
Date Posted: Dec 22, 08 - 5:52 PM
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Message: Karen, we have put our daughter, Amber who is 27 too, on a mild pain pill. Like you it is hard to know where the pain is only that Amber is mouning and I don't know why. I talked to our doctors and they both agreed a mild pain med was in order. Only you can say if you think your child is in pain, no matter why, we don't want them to be in pain. Talk to your doctor and see if he agrees with you to give her something. Think about what you would do for a baby who could not communicate with you. That is how I think with my girls, they can't speak for themselves and I have to try what I think is best. Trial and error is the only why to fix it. I hope this has helped. Take care
Darlene Royalty, mother of three with Battens
Name: Corrina Dahl
Date Posted: Dec 22, 08 - 6:05 PM
Message: Hello! I'm sorry your daughter is in pain.
My son is only 11 with JNCL and has been complaining of pain in his arms and legs since before he was diagnosed. He was diagnosed at age 6. My son takes pain really well so has only ever needed ibuprophen. However, everyone's pain tolerance and response to pain meds is different so she might need something a bit stronger than OTC meds.
I totally agree with Darlene about you being the best one to assess if your child is in pain.
Name: Karen
Date Posted: Dec 22, 08 - 2:42 PM
Email: Click here to Email
Message: My daughter, who is 27 with a variant of JNCL, has begun experiencing pain. She also doesn't eat much. I don't know if that's because her body hurts, or if she is losing her appetite. She takes Keppra for seizure control. Can anyone tell me if pain is a common symptom, and what can be done about it? We are suffering through some awfully cold weather, and I have wondered if that can be a contributing factor. Because her speech is so poor, we can't understand what type of pain she is feeling, and if it goes away under certain circumstances. Has anyone gone through this, and if so, what were you able to do about it?
Thanks for your input. Karen
Name: Darlene Royalty
Date Posted: Dec 22, 08 - 5:52 PM
Email: Click here to Email
Message: Karen, we have put our daughter, Amber who is 27 too, on a mild pain pill. Like you it is hard to know where the pain is only that Amber is mouning and I don't know why. I talked to our doctors and they both agreed a mild pain med was in order. Only you can say if you think your child is in pain, no matter why, we don't want them to be in pain. Talk to your doctor and see if he agrees with you to give her something. Think about what you would do for a baby who could not communicate with you. That is how I think with my girls, they can't speak for themselves and I have to try what I think is best. Trial and error is the only why to fix it. I hope this has helped. Take care
Darlene Royalty, mother of three with Battens
Name: Corrina Dahl
Date Posted: Dec 22, 08 - 6:05 PM
Message: Hello! I'm sorry your daughter is in pain.
My son is only 11 with JNCL and has been complaining of pain in his arms and legs since before he was diagnosed. He was diagnosed at age 6. My son takes pain really well so has only ever needed ibuprophen. However, everyone's pain tolerance and response to pain meds is different so she might need something a bit stronger than OTC meds.
I totally agree with Darlene about you being the best one to assess if your child is in pain.