im happy to hear you have done so well on it. Sadly it has not stopped all his fmf attacks but has for SURE without a doubt cut down on them drastically. its nice to hear other adults with this condition are doing well, it gives us hope that he will have a long "normal" life.
Jaime, He has been on this medication for years now (colchicine and now colcrys) and thankfully he does not object AT ALL anymore to taking it.. its become his normal routine. He doesnt bite it either, its soo bitter if you bite it im sure! I would prefer not hiding it in his food as someday he will have to take it on his own and be responsible for it. if i hide it all his childhood he will have a harder time keeping track, remembering to take it, exc. this way he tells *me* when he needs it
I am on the yahoo group but currently get the digest and rarely ever read it.. i need to start doing so lol!! Its nice to know were not alone out there with this!
Janine, FMF unfortunetly is soooo rare in the US i couldnt agree with you more!He had a HORRIBLE FMF attack about a week ago, left him totally crippled for a 6 days (couldnt walk due to pain, was on ibprofen and tylenol) fevers, mouth sores, the whole 9 yards. He has been on Colcrys since January 6, 2011 and over all has done very well but since this most recent attack we have had to up his dose to .9mg a day and it burns his stomach if not taken with food.
Was really surprised to find this - FMF is so rare in the US. Ethan is so cute. Are you signed up with the Yahoo FMF support group? If not go to Yahoo.com then find "groups" then find "FMF." I hang around there so please look me up - I'd like to know how Ethan is and how you are (and what are you doing about the Colcrys issue?)
Please bite half of a colchicine pill and give it a try.....he will hate it when he is a little older and you will have trouble....my mother gave it to me hidden in sweet stuff: fruit and when i was older a bit of chocolate and I really looked forward for colchicine time.
Im 30.5 years been on colchicine for 29.5 years its all good I live a normal life and have rarely an attack now.
If his on C he will be fine!
Congrats for the kid looks healthy and intelligent.
im happy to hear you have done so well on it. Sadly it has not stopped all his fmf attacks but has for SURE without a doubt cut down on them drastically. its nice to hear other adults with this condition are doing well, it gives us hope that he will have a long "normal" life.
lovelymomma 9 months ago
Jaime, He has been on this medication for years now (colchicine and now colcrys) and thankfully he does not object AT ALL anymore to taking it.. its become his normal routine. He doesnt bite it either, its soo bitter if you bite it im sure! I would prefer not hiding it in his food as someday he will have to take it on his own and be responsible for it. if i hide it all his childhood he will have a harder time keeping track, remembering to take it, exc. this way he tells *me* when he needs it
lovelymomma 9 months ago
I am on the yahoo group but currently get the digest and rarely ever read it.. i need to start doing so lol!! Its nice to know were not alone out there with this!
lovelymomma 9 months ago
Janine, FMF unfortunetly is soooo rare in the US i couldnt agree with you more!He had a HORRIBLE FMF attack about a week ago, left him totally crippled for a 6 days (couldnt walk due to pain, was on ibprofen and tylenol) fevers, mouth sores, the whole 9 yards. He has been on Colcrys since January 6, 2011 and over all has done very well but since this most recent attack we have had to up his dose to .9mg a day and it burns his stomach if not taken with food.
lovelymomma 9 months ago
Was really surprised to find this - FMF is so rare in the US. Ethan is so cute. Are you signed up with the Yahoo FMF support group? If not go to Yahoo.com then find "groups" then find "FMF." I hang around there so please look me up - I'd like to know how Ethan is and how you are (and what are you doing about the Colcrys issue?)
Janine
immissmoo 9 months ago
Please bite half of a colchicine pill and give it a try.....he will hate it when he is a little older and you will have trouble....my mother gave it to me hidden in sweet stuff: fruit and when i was older a bit of chocolate and I really looked forward for colchicine time.
Im 30.5 years been on colchicine for 29.5 years its all good I live a normal life and have rarely an attack now.
If his on C he will be fine!
Congrats for the kid looks healthy and intelligent.
Best
Jaime
smokesolid 9 months ago
he has a genetic condition called familial mediterranean fever that requires daily colchicine therapy. (im responding from our other youtube account)
hfamily369 1 year ago
why does Ethan need Colchicine?
fatpantsdave 1 year ago