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Post by katjat on Dec 7, 2010 16:33:13 GMT -5
Hi there! We are a family of six and our 5 year old son Justus is diagnosed with AHC. He was diagnosed at age of 3 but symptoms started soon after birth. It appears that so far he is the only one diagnosed with AHC in Finland. I was wondering if we could hang with you guys as English is our strongest foreign language. Concerns and treatments seem to be the same. Justus suffers attacks weekly, usually on left arm. He also has epilepsia, sometimes even severe attacks, mostly manageable at home though. He speeks only a few words but somehow gets his point anyway. Overall, he is charming young man and super active all the time! Id love to hear about your daily lives and how you cope with the disease.
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emma
New Member
Posts: 7
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Post by emma on Dec 13, 2010 8:47:51 GMT -5
Hi,
My name is Emma, our Daughter Abigail was diagnosed with AHC at 11months.
Abigail is not walking but does have a few words, she does seem to becoming increasingly frustrated at not being independent and not being understood. We are having trouble at present getting Abigail the therapies that she needs from our local health authority which I am sure you understand is annoying as it feels Abigail is being denied the opportunity to reach her full potential.
Abigail has just suffered an attack that lasted 11 days and for 5 days of this attack it affected both arms, legs and her breathing, hopefully we wont have another one of those for a while.
We have managed to control Abigail's episodes so far at home.
Abigail keeps us on our toes !!
Hope that Justus, You and your family are all well at moment.
Have a wonderful Christmas
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Post by Thomas Way on Jan 18, 2011 0:31:27 GMT -5
Hi Katjat and Justus I hadn't checked in for a while but it's great to see you join up. My family, and son Patrick, are also the only diagnosed case in our country (Indonesia) so we know how you feel Pat's almost 3 now. He's got only 3 words so far ('mama', 'brmmmmm' (motorbike) and 'no') but like you say he's full of character ;D Like Emma, we deal with most attacks at home... our experience with hospitals hasn't been all that good, and I feel like I'm studying for a degree in neurology with the amount I've read over the last year. We use midazolam to treat severe attacks but I'm not really sure about how effective it is. What do you use? All the best Hi Emma, hope you guys are well and your new addition is thriving!
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emma
New Member
Posts: 7
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Post by emma on Jan 18, 2011 9:40:45 GMT -5
Hi Thomas,
HAPPY NEW YEAR !
Hope that the 3 of you are well, how is the puppy ?
All is good with us, Abigail's episodes seem to gave increased in duration and intensity which is a bit of a downer.
Do you think you will come to the meeting if there is one this year ?
Best Wishes Emma
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Post by Siggi on Jun 28, 2011 18:37:36 GMT -5
Hi, My name is Siggi and I live in Reykjavik, Iceland. We have a daughter, Sunna Valdis 5 years old, who is the only AHC patient in Iceland. We have been in good contact with the AHC associationa in Europe and would very much like to keep it touch with you and hear how you are doing. We have an association formed around our daughter and the website is www.ahc.is our personal email is sivira@internet.is Hope to hear from you Best regards Siggi
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