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kim & desmond watson
dimanche 11 mai 2008 18:20
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thank you once again donna i will try benadryl to see if this helps him. i had tried Piriton but it didnt seem to make any difference. When the swelling and redness subsides it tends to leave him with septic blisters that almost look like bed-sores except they only appear on the end of his toes and fingers. thank you for the info again. kim
Donna Miller
mercredi 30 avril 2008 23:30
Hi,
My son Benjamin had Botox three times in his legs for tight muscles. The first time it worked okay and there were no problems. The second time it worked very little, and there were no problems. The third time he had a severe encephalitis reaction to it and almost died. At one point he was barely breathing and his heart rate was very low. He was limp and would not stay awake. This lasted about 3 weeks. It was agony--we thought we were going to lose him. Prior to this incident, he could see moderately well, responding to toys and pictures shown to him, and opening his mouth when he saw a spoonful of food. After this incident, he went mostly blind and this became permanent. Now, he only sees light and dark and some movement. He eventually was able to move his arms and legs again, but it took several months to recover.
The reason why this happened is because anything that has the potential to rev up the immune system can make the brain inflammation in AGS go higher. There is always some inflammation in the brain in AGS--that is why they measure the levels of alpha interferon and white cell count in the spinal fluid. Anything that stresses the body and revs up the immune system can make the brain inflammation worse. Normal persons generally can handle Botox, and their immune system does not react badly to it. Our kids cannot handle the Botox. It might not cause a problem the first time you use it, but each time that it is used has the potential to cause further inflammation and further brain damage in our kids. Since Botox only lasts a few months and needs repeating, it is not worth it to try even once. Some families still choose to try it. Do you really want to risk your child's life for limited benefit?
In the last six months, there have been articles stating that there have been at least 20 deaths from Botox and hundreds of bad reactions. Just Google the words "Botox + death", and you will get lots of articles on it.
Most of these deaths have been in children with cerebral palsy. Botox is a neuro toxin--meaning it is a toxin that kills nerves. Our kids already have brain damage; think about giving a known brain toxin to somebody who already has brain damage. It is not worth it.
When Ben had his bad reaction, one of the doctors in Europe told me that one of his AGS patients did the same thing with Botox.
Thankyou for asking about this.
If you have any other questions, please feel free to ask.
Sincerely,
Donna Miller
My son Benjamin had Botox three times in his legs for tight muscles. The first time it worked okay and there were no problems. The second time it worked very little, and there were no problems. The third time he had a severe encephalitis reaction to it and almost died. At one point he was barely breathing and his heart rate was very low. He was limp and would not stay awake. This lasted about 3 weeks. It was agony--we thought we were going to lose him. Prior to this incident, he could see moderately well, responding to toys and pictures shown to him, and opening his mouth when he saw a spoonful of food. After this incident, he went mostly blind and this became permanent. Now, he only sees light and dark and some movement. He eventually was able to move his arms and legs again, but it took several months to recover.
The reason why this happened is because anything that has the potential to rev up the immune system can make the brain inflammation in AGS go higher. There is always some inflammation in the brain in AGS--that is why they measure the levels of alpha interferon and white cell count in the spinal fluid. Anything that stresses the body and revs up the immune system can make the brain inflammation worse. Normal persons generally can handle Botox, and their immune system does not react badly to it. Our kids cannot handle the Botox. It might not cause a problem the first time you use it, but each time that it is used has the potential to cause further inflammation and further brain damage in our kids. Since Botox only lasts a few months and needs repeating, it is not worth it to try even once. Some families still choose to try it. Do you really want to risk your child's life for limited benefit?
In the last six months, there have been articles stating that there have been at least 20 deaths from Botox and hundreds of bad reactions. Just Google the words "Botox + death", and you will get lots of articles on it.
Most of these deaths have been in children with cerebral palsy. Botox is a neuro toxin--meaning it is a toxin that kills nerves. Our kids already have brain damage; think about giving a known brain toxin to somebody who already has brain damage. It is not worth it.
When Ben had his bad reaction, one of the doctors in Europe told me that one of his AGS patients did the same thing with Botox.
Thankyou for asking about this.
If you have any other questions, please feel free to ask.
Sincerely,
Donna Miller
Evan Duffield
mardi 29 avril 2008 20:06
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Hi Donna, could you send us some of the information that you gave another family about botox Meany Thanks Larry and Emma
donna miller
dimanche 27 avril 2008 21:37
If your child has very red, swollen hands, feet, cheeks, or ears, try giving him some Benadryl to see if it goes away within an hour. If it does, give Benadryl 4 times a day for a few days to see if the redness does not come back. He might need to take benadryl every day. What you are probably seeing is a histamine release, but not bad enough to show hives yet. If your child could talk, he would say that the skin itches like mad when it is red. My sons get this from cold temperatures,which you can avoid by keeping them warm. But you also need to use the process of elimination to find out if he is allergic to other things. We have found that our sons are allergic to red dye #40 (found in foods, medicines, and tooth paste), carpeting, new vinyl that is offgassing, and to benzalkonium chloride (a preservative in nasal sprays, eye drops and other liquids). It just took observation, trial, and error to find these out. Malachi probably has an allergy to something, and you will have to figure it out. If you can eliminate the allergens, then he will be much better off, and you will not need to make him sleepy with the Benadryl or other antihistamine.
kim & desmond watsond
dimanche 27 avril 2008 11:47
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cant believe my computer is finally working....... another advice seeking mission........Malachi has always had lesions intermittently throughtout his life on his toes, fingers & ears. in any weather (hot or cold). Quite recently he has developed a real nasty one on the top of his hand which took several months to clear up. I wonder if anyone has had any success or advice on how to treat them. The only thing i am told is to give him paracetomol, but they are very swollen & angry red and i wonder is there nothing that can help with the swelling or to make him more comfortable...... many thanks. kim
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