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virginia cooper
mercredi 25 juin 2008 07:38
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Hi,
I am looking to make contact with other Aicardi_Goutieres Families. I live in Australia. I have four children and my youngest child has suspected Aicardi-goutieres. He has high levels in his spinal fluid which indicates this disease. Reading through posts he fits the symptoms. I am particulary interested in speaking with Donna as my son recently had botox which has caused him to regress also. He is having swallowing problems and we are now looking at having a tube placed. Michael has also lost his ability to step since having the botox. He has declined in several ways. My email address is ginnynjcooper@optusnet.com.au I look forward to hearing from other families, sincerly, Virginia Cooper
I am looking to make contact with other Aicardi_Goutieres Families. I live in Australia. I have four children and my youngest child has suspected Aicardi-goutieres. He has high levels in his spinal fluid which indicates this disease. Reading through posts he fits the symptoms. I am particulary interested in speaking with Donna as my son recently had botox which has caused him to regress also. He is having swallowing problems and we are now looking at having a tube placed. Michael has also lost his ability to step since having the botox. He has declined in several ways. My email address is ginnynjcooper@optusnet.com.au I look forward to hearing from other families, sincerly, Virginia Cooper
karolina de castro cordeiro
mardi 24 juin 2008 19:32
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hello I would mandar a strong hug to all mothers and their beloved baby.
strength,
I know that is not easy ...
all good get all ...
hugs
strength,
I know that is not easy ...
all good get all ...
hugs
Cynthia A Pietrzykowski
vendredi 20 juin 2008 12:54
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Hi to all, Sarah is my 2 year old who was clinically diagnosed with AGS, we are waiting for her genetic testing to be compleated. She too has poor circulation in her hands and feet. We just recently had comprission stockings made for her by JOBST We only have had them for a few weeks but her foot color looks great. A nice healthy pink! If you were interested you'll need to find a distributor who measures for coustom stockings. I hope this helps! Cindy
kim & desmond watson
samedi 14 juin 2008 19:25
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another question for any parents that have travelled abroad with their children. I have travelled several times with Malachi but have never been able to get travel insurance for any medical needs. Even travel companies that state they will insure life-limiting/terminally ill children refuse his application. I will be travelling again in nov'08 with him and once again cannot find insurance. i will take the chance again and travel without it but i would much rather be covered for any eventuality! any ideas welcome. kim&des
kim & desmond watson
samedi 14 juin 2008 19:21
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thankyou everyone for your advice re chilblains.we are going to persist with the Benadryl, i think it is having a positive reaction. he seems much more settled with this medication on board.
Also some info for donna to say that Malachi has always had the histamine releases (redness & swelling)on his fingers and toes since about 3mths old, not all the time but intermittently. When they increased with frequency they also increased with intensity. Then approx 5yrs old he started to develop the chilblains, at first they appeared occassionaly now he barely has a week free of them. I think you're right his circulation has always been poor, his hands & feet especially can be extremely cold, and can take forever to warm up and even then they lose their heat very quickly. Although we found if you heat them up too quickly the redness very quickly turns into a chilblain.....so please becareful for other parents trying to keep their children warm. I'm going to contact the website re: the boots i think thats a great idea. We have been using a footwarmer but it doesnt really sustain the warmth. again thankyou. kim & des
Also some info for donna to say that Malachi has always had the histamine releases (redness & swelling)on his fingers and toes since about 3mths old, not all the time but intermittently. When they increased with frequency they also increased with intensity. Then approx 5yrs old he started to develop the chilblains, at first they appeared occassionaly now he barely has a week free of them. I think you're right his circulation has always been poor, his hands & feet especially can be extremely cold, and can take forever to warm up and even then they lose their heat very quickly. Although we found if you heat them up too quickly the redness very quickly turns into a chilblain.....so please becareful for other parents trying to keep their children warm. I'm going to contact the website re: the boots i think thats a great idea. We have been using a footwarmer but it doesnt really sustain the warmth. again thankyou. kim & des
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