Post by Amy Lombardi on Mar 30, 2009 9:30:18 GMT -5
Subject: Hallucinations
Name: Glenda Flatt
Date Posted: Aug 25, 08 - 12:05 PM
Message: Our son is really starting to not eat...loosing alot of weight. He hears voices telling him that the food is not good for him, and variations. Any advice to help us get him to eat. We are trying ensure in ice cream.
Name: Nori
Date Posted: Aug 25, 08 - 1:04 PM
Email: Click here to Email
Message: I would not mess around, I would just get a feeding tube. Once he is well nourished again you will probably see a big difference in his mental state. He may even start eating again. For my two boys, getting the tube was very easy. It was done as an outpatient and virtually no recovery time. They both started eating again after their nutrition was improved. And no more fighting to get food or medications down!
Name: Glenda Flatt
Date Posted: Aug 25, 08 - 4:46 PM
Message: He uses his hands constantly, how would we keep him from pulling the tube out? He is always making things and working with his hands. He swallows pretty well right now...does get choked sometimes, but we are waiting for the tube till we just have to.
Name: Nori
Date Posted: Aug 26, 08 - 6:22 AM
Email: Click here to Email
Message: Hi,
I think most JNCL kids are still fairly active, especially with their hands when they get their feeding tubes. A Mickey Button lays flat against the stomach and is the least likely to get pulled out. You can use a "belly band" if he messes with it. You can learn how to replace them at home so that if it does get pulled out you can quickly replace it. It is a really easy proceedure to replace one and in my opinion not worth going to the hospital to have it replaced in any circumstances. They have to be replaced about every six months anyway because the little balloon inside the stomach breaks from the stomach acid. Are you aware that he can still eat by mouth even with a tube? It only takes one choking episode to put a kid in the hospital with aspiration pneumonia. What is it that you are worried about if he gets one?
Name: Roger Crane
Date Posted: Aug 29, 08 - 4:06 AM
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Message: Amen to all Nori has said. She is spot on the money!!!!
Name: irena
Date Posted: Aug 26, 08 - 9:27 AM
Message: Hello Glenda, just wondered if your son is having anything to help with the Hallucinations ? Maybe his eating would improve if the hallucinations were under control? Sorry if you have already mentioned this elsewhere.
Name: Eric Faret
Date Posted: Aug 26, 08 - 10:14 AM
Message: Glenda, Ryan had bad hallucinations for a time and mostly went away over time. You might want to consider a drug to help with the hallucinations Vs a feeding tube. I am not one to medicate first but I hear there are wonderful drugs on the market to help and you seem very concerned about a feeding tube. This may be an easier alternative. Try speaking with Nurse Nancy in the office about this.
Ryan's hallucinations mostly went away after we introduced Clonazapam to his seizure meds. Maybe it was coincidental that the hallucinations went away as Clonazapam is a seizure drug.
Name: Karen
Date Posted: Aug 26, 08 - 5:43 PM
Email: Click here to Email
Message: When my girls were having halucinations I was told by the doctors that they were a form of seizure which would explain when adding or increasing a seizure med they would slow up or disappear. Just a little thought into the matter.
Name: Glenda Flatt
Date Posted: Aug 25, 08 - 12:05 PM
Message: Our son is really starting to not eat...loosing alot of weight. He hears voices telling him that the food is not good for him, and variations. Any advice to help us get him to eat. We are trying ensure in ice cream.
Name: Nori
Date Posted: Aug 25, 08 - 1:04 PM
Email: Click here to Email
Message: I would not mess around, I would just get a feeding tube. Once he is well nourished again you will probably see a big difference in his mental state. He may even start eating again. For my two boys, getting the tube was very easy. It was done as an outpatient and virtually no recovery time. They both started eating again after their nutrition was improved. And no more fighting to get food or medications down!
Name: Glenda Flatt
Date Posted: Aug 25, 08 - 4:46 PM
Message: He uses his hands constantly, how would we keep him from pulling the tube out? He is always making things and working with his hands. He swallows pretty well right now...does get choked sometimes, but we are waiting for the tube till we just have to.
Name: Nori
Date Posted: Aug 26, 08 - 6:22 AM
Email: Click here to Email
Message: Hi,
I think most JNCL kids are still fairly active, especially with their hands when they get their feeding tubes. A Mickey Button lays flat against the stomach and is the least likely to get pulled out. You can use a "belly band" if he messes with it. You can learn how to replace them at home so that if it does get pulled out you can quickly replace it. It is a really easy proceedure to replace one and in my opinion not worth going to the hospital to have it replaced in any circumstances. They have to be replaced about every six months anyway because the little balloon inside the stomach breaks from the stomach acid. Are you aware that he can still eat by mouth even with a tube? It only takes one choking episode to put a kid in the hospital with aspiration pneumonia. What is it that you are worried about if he gets one?
Name: Roger Crane
Date Posted: Aug 29, 08 - 4:06 AM
Email: Click here to Email
Message: Amen to all Nori has said. She is spot on the money!!!!
Name: irena
Date Posted: Aug 26, 08 - 9:27 AM
Message: Hello Glenda, just wondered if your son is having anything to help with the Hallucinations ? Maybe his eating would improve if the hallucinations were under control? Sorry if you have already mentioned this elsewhere.
Name: Eric Faret
Date Posted: Aug 26, 08 - 10:14 AM
Message: Glenda, Ryan had bad hallucinations for a time and mostly went away over time. You might want to consider a drug to help with the hallucinations Vs a feeding tube. I am not one to medicate first but I hear there are wonderful drugs on the market to help and you seem very concerned about a feeding tube. This may be an easier alternative. Try speaking with Nurse Nancy in the office about this.
Ryan's hallucinations mostly went away after we introduced Clonazapam to his seizure meds. Maybe it was coincidental that the hallucinations went away as Clonazapam is a seizure drug.
Name: Karen
Date Posted: Aug 26, 08 - 5:43 PM
Email: Click here to Email
Message: When my girls were having halucinations I was told by the doctors that they were a form of seizure which would explain when adding or increasing a seizure med they would slow up or disappear. Just a little thought into the matter.