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Jean Maurer
mercredi 28 mai 2008 02:08
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Has anyone tried Hyperbaric Oxygen Therapy with their AGS child? I have been reading about its success with MS and other demylenating diseases.
Tim Maurer
vendredi 23 mai 2008 14:01
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Hello All,
I thought I would share an article from Science News dated April 5,2008 called Traveling Toxin. Now, I am not a doctor and I am only posting this so AGS parents can be informed.
The article descibes how the neurotoxin Botox can move through the body by nerve cells and remain active beyond the injection site. The article recognizes the benefits of Botox and wishes not to deter it's continued theraputic use.
The article describes how Botulinum acts by interfering with the nerve-to-muscle communication. The botulinum effectively slices up the chemical communication signals that have later been found in other parts of the body. In rodent tests, they injected a rat's part of the brain that controls sight and later found evidence of the toxin in the eyes. Almost all tests show the severed chemical signals turned up in nerve populations at the injection site, suggesting the toxins travel within the nerve cell.
I'm not trying to convince anyone. I just thought I would share some ongoing research so AGS parents can make an informed decision about it's use.
Tim
I thought I would share an article from Science News dated April 5,2008 called Traveling Toxin. Now, I am not a doctor and I am only posting this so AGS parents can be informed.
The article descibes how the neurotoxin Botox can move through the body by nerve cells and remain active beyond the injection site. The article recognizes the benefits of Botox and wishes not to deter it's continued theraputic use.
The article describes how Botulinum acts by interfering with the nerve-to-muscle communication. The botulinum effectively slices up the chemical communication signals that have later been found in other parts of the body. In rodent tests, they injected a rat's part of the brain that controls sight and later found evidence of the toxin in the eyes. Almost all tests show the severed chemical signals turned up in nerve populations at the injection site, suggesting the toxins travel within the nerve cell.
I'm not trying to convince anyone. I just thought I would share some ongoing research so AGS parents can make an informed decision about it's use.
Tim
Fiammetta Boni Longo
jeudi 22 mai 2008 16:38
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vorrei leggere il guestbook
Donna Miller
dimanche 18 mai 2008 04:40
Giving Benadryl now will not stop the chilblains because the circulatory damage has already occurred. The benadryl will stop the chronic histamine releases as they happen right now, and thus may stop or slow down damage to more blood vessels.
If your child has lots of histamine releases, you can give the benadryl for a few days to see if the releases can be controlled or not. If it does stop the histamine releases, then there are other antihistamines that can be given that do not cause sleepiness. However, I have found that most of them do not work for my sons. For a certain percentage of the population with certain metabolism, their bodies neutralize some antihistamines such as Claritin so they do not work. All you can do is try them on your child and see if they reduce the histamine releases.
If your child already has chilblains, the treatment for them is to keep the hands/feet warm and keep circulation flowing as best as possible. We just saw a rheumatologist last week, and he is considering also trying blood pressure pills that will improve circulation, and blood thinners such as a baby aspirin.
A good item to keep feet warm is a boot blanket from www.icebreakerinc.com . It is a heavy insulated boot cover that is made for hunters, and costs $50-$60. Our sons have worn these boot blankets every day from September to May since 2004. Prior to 2004, Ben had multiple chilblains on all his toes for most of the previous three winters. In 2005 and 2006, the boot prevented all chilblains. In 2007, one toe had such bad circulation that he still got chilblains with the boots on, but it was much milder than prior to 2004.
I have a theory that the kids who tend to be the coldest and have the most histamine releases eventually develop chilblains. Some AGS kids are always cold. Some are not. My older son is warmer, has had fewer histamine problems, and has never had chilblains yet. My younger son has always been very cold, has had daily histamine releases since birth, and he developed chilblains at about age 6. I would like to hear from other AGS families for their experiences and whether or not this seems to fit their kids. If this theory proves true, then young AGS kids who show a lot of histamine problems should be treated agressively with antihistamines so they do not develop chilblains later on. I would also like to hear from any families if they have tried blood thinners or blood pressure meds and if they have helped improve circulation and stop the chilblains. Thank you.
If your child has lots of histamine releases, you can give the benadryl for a few days to see if the releases can be controlled or not. If it does stop the histamine releases, then there are other antihistamines that can be given that do not cause sleepiness. However, I have found that most of them do not work for my sons. For a certain percentage of the population with certain metabolism, their bodies neutralize some antihistamines such as Claritin so they do not work. All you can do is try them on your child and see if they reduce the histamine releases.
If your child already has chilblains, the treatment for them is to keep the hands/feet warm and keep circulation flowing as best as possible. We just saw a rheumatologist last week, and he is considering also trying blood pressure pills that will improve circulation, and blood thinners such as a baby aspirin.
A good item to keep feet warm is a boot blanket from www.icebreakerinc.com . It is a heavy insulated boot cover that is made for hunters, and costs $50-$60. Our sons have worn these boot blankets every day from September to May since 2004. Prior to 2004, Ben had multiple chilblains on all his toes for most of the previous three winters. In 2005 and 2006, the boot prevented all chilblains. In 2007, one toe had such bad circulation that he still got chilblains with the boots on, but it was much milder than prior to 2004.
I have a theory that the kids who tend to be the coldest and have the most histamine releases eventually develop chilblains. Some AGS kids are always cold. Some are not. My older son is warmer, has had fewer histamine problems, and has never had chilblains yet. My younger son has always been very cold, has had daily histamine releases since birth, and he developed chilblains at about age 6. I would like to hear from other AGS families for their experiences and whether or not this seems to fit their kids. If this theory proves true, then young AGS kids who show a lot of histamine problems should be treated agressively with antihistamines so they do not develop chilblains later on. I would also like to hear from any families if they have tried blood thinners or blood pressure meds and if they have helped improve circulation and stop the chilblains. Thank you.
Kimberly Taylor
samedi 17 mai 2008 23:16
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Hi Kim Watson, The sores you are describing are called Chilblains. Benadryl will probably stop the itchy feeling and really knock a child out especially if given every day or 4 times a day! If I give my daughter benadryl one day she's practically out of it for the whole day, so be careful. Chilblains are a painful abnormal reaction of the small blood vessels in the skin when exposed to cold temperatures. It can also be due to poor circulation, an inadequate diet or an allergic response to low temperatures. Alot of children with AGS have the chilblains.The chilblains also cause burning and itching. There are several things you can try to help prevent them like keeping them warm, med's to improve circulation,nifedipine to help prevent chilblains. Once they have chilblains you can use corticosteroid creams, calamine lotion,topical steroids, or topical antibiotics to relieve the itching and swelling.Hope this helps you! ~Kim Taylor~
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