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kim lund
dimanche 3 février 2008 18:36
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I have had nice response to survey
Please respond the more that participate the better
e mail me Please
Please respond the more that participate the better
e mail me Please
karolina de castro cordeiro alvarenga
dimanche 27 janvier 2008 17:57
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Good afternoon,
I am Brazilian, my son is called pedro and has one year and eight months.
With eight months began to be hípotonico.
After ten months of research, found to be aicardi syndrome-goutieres.
It is well is healthy, never had seizures and never took any medicamento.alimenta up normally.
I would like to exchange ideas with other mothers, on the age of their children, how they live and whether you have made any therapy.
My son does pedro physiotherapy, fonoudiologia, hridroterapia, equoterapia.
Bound and await return ....
I am Brazilian, my son is called pedro and has one year and eight months.
With eight months began to be hípotonico.
After ten months of research, found to be aicardi syndrome-goutieres.
It is well is healthy, never had seizures and never took any medicamento.alimenta up normally.
I would like to exchange ideas with other mothers, on the age of their children, how they live and whether you have made any therapy.
My son does pedro physiotherapy, fonoudiologia, hridroterapia, equoterapia.
Bound and await return ....
Donna Miller
vendredi 25 janvier 2008 04:09
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I would hope that we learn from each other on what helps and hurts our kids so that mistakes are not repeated. It is very well known that in AGS, the immune system is very hyper and causes major brain damage. Anything that revs the immune system can cause further brain inflammation and further brain damage. Botox or Botulinium is a known neurotoxin. Yes, it can be used to temporarily paralyze a muscle and so help persons who have muscle contractures. We used it on my youngest son three times. The first two times were okay. The third time he had a severe neurological inflammation reaction to the Botox, to the point where he was barely breathing and he almost died. It took him months to recover from this episode, and he had permanent blindness afterwards. I would hope that other AGS families never have to experience the agony of watching your child regress and almost die. That is why I urge you to never try Botox. One other AGS family has chosen to try Botox anyway, and they say it has helped. But Botox effects only last a few months and need to be repeated. Your child might not regress on the first or second time, but are you going to keep risking his or her life a third, fourth, or fifth time? Simple surgeries carry much less risk and far more permanent positive effects for muscle contractures. Please learn from my experiences and my mistakes. I urge you to not use Botox on AGS children.
Sincerely,
Donna Miller
Sincerely,
Donna Miller
kim lund
mardi 22 janvier 2008 17:46
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Survey can be done in English, Spanish, or French, possibly German.
I have had 8 families already respond.
Please, let us help each other.
I have had 8 families already respond.
Please, let us help each other.
kim lund
lundi 21 janvier 2008 18:35
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Dear Parnts,
I have corresponded with many of you. But for others, my name is Kim. I am the mother of Gavin. A 6 month old boy, diagnosed with AGS at age 4 months. This was after a long 27 nites in the hospital in California. For you see, his imaging studies were initially all normal. I am also the mom of 3 older healthy daughters, an occupational therapist and a family physician. I, like many of you, have been very frustrated with the lack of parental information available, that helps living the day to day. I have been fortunate to network with many of you. I realized there IS a wealth of knowledge among the parents. With donated funds, I am putting together a "handbook" for parents. I will be sending out surveys. I will then sort through the information, and mail each participant back a completed handbook. I will have extras made for the next AGS family, to help ease their pain and frustration.
If you would like to partcipate, please e mail me.
Kim
I have corresponded with many of you. But for others, my name is Kim. I am the mother of Gavin. A 6 month old boy, diagnosed with AGS at age 4 months. This was after a long 27 nites in the hospital in California. For you see, his imaging studies were initially all normal. I am also the mom of 3 older healthy daughters, an occupational therapist and a family physician. I, like many of you, have been very frustrated with the lack of parental information available, that helps living the day to day. I have been fortunate to network with many of you. I realized there IS a wealth of knowledge among the parents. With donated funds, I am putting together a "handbook" for parents. I will be sending out surveys. I will then sort through the information, and mail each participant back a completed handbook. I will have extras made for the next AGS family, to help ease their pain and frustration.
If you would like to partcipate, please e mail me.
Kim
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