CAL2
DIS Veteran
- Joined
- Feb 23, 2014
hi, its looking like we may have to cancel our November trip.
my daughter developed vasculitis when she was 12, this was 2 months before our first ever family trip to Disney world in 2007. The doctors let her go on the holiday as they mis-diagnosed her with juvenile arthritis, saying the warm weather would do her good. unfortunately she became quite ill while on holiday and as soon as we landed and got back home she was hospitalized, and this is when they finally diagnosed her with vasculitis. within a few months of receiving the right medication she was well on the road to recovery and back to school.
for the last 18 months DD has been back and forth to the doctors and hospital with marks and lumps on her legs, arms and face and a continuous headache. they kept telling her there was nothing wrong, then they said the pain in her head were cluster headaches.
About 3 months ago DD went back to the doctors again who did another blood test which showed mild inflammation, she was put on steroids, but nothing changed in fact she got worse developing a lump inside her nose that is so pain full she cant wear her glasses. she was referred back to the specialist at Addinbrooks who confirmed that the vasculitis is back. she is now back on her full meds to combat the condition. so all was well we thought, until her check up this Friday, the consultant now thinks she has a different strain of vasculitis than before, so different treatment will be needed. but before they can change her treatment he needs to confirm the strain he thinks she has, ( if she even has a different strain) which is done with bloods and a biopsy.
when i said we are due to go on holiday in 3 months he said i will be able to tell you if she can go in about a month. his reply shocked me, i started worrying how serious is this different strain, will she be so ill that she wont be fit enough to travel? i talked to my mums niece who is a medical lecturer, and knows a lot of people in the know, and will ask them if they know the medical reasons as to why DD wont be able to go, she did mention that it could be because of the way they will need to give her the treatment, or he's just being non committal. she is going to talk to relevant doctors on mon to ask more question for me, if i get no joy from them then i think i will just have to phone back to the consultant and ask myself, i hope it is just because of the way the drugs need to be administered and not because she is going to become so unwell she wont be able to go on holiday, the not knowing is worse than knowing.
obviously we will do what is best for our DD, who bless her takes it all in her stride, she says its part of her life and she wont let it stop her doing what she wants, although she has cut her work hours down to 32 a week, when she use to do 50, but apart from that she carries on as normal, considering shes been in pain for 18 months, personalty i think a holiday is just what she needs. even if she does need to use a wheelchair now an again as to much walking makes the pain worse.
Our dilemma is we have to cancel or transfer our holiday by 24th august. i can't see us having an answer from the doctors by then. the only thing i can think to do is phone my insurance company and see where we stand, as DD is insured for vasculitis, but don't want to do that till closer to the cut off point.
cal
my daughter developed vasculitis when she was 12, this was 2 months before our first ever family trip to Disney world in 2007. The doctors let her go on the holiday as they mis-diagnosed her with juvenile arthritis, saying the warm weather would do her good. unfortunately she became quite ill while on holiday and as soon as we landed and got back home she was hospitalized, and this is when they finally diagnosed her with vasculitis. within a few months of receiving the right medication she was well on the road to recovery and back to school.
for the last 18 months DD has been back and forth to the doctors and hospital with marks and lumps on her legs, arms and face and a continuous headache. they kept telling her there was nothing wrong, then they said the pain in her head were cluster headaches.
About 3 months ago DD went back to the doctors again who did another blood test which showed mild inflammation, she was put on steroids, but nothing changed in fact she got worse developing a lump inside her nose that is so pain full she cant wear her glasses. she was referred back to the specialist at Addinbrooks who confirmed that the vasculitis is back. she is now back on her full meds to combat the condition. so all was well we thought, until her check up this Friday, the consultant now thinks she has a different strain of vasculitis than before, so different treatment will be needed. but before they can change her treatment he needs to confirm the strain he thinks she has, ( if she even has a different strain) which is done with bloods and a biopsy.
when i said we are due to go on holiday in 3 months he said i will be able to tell you if she can go in about a month. his reply shocked me, i started worrying how serious is this different strain, will she be so ill that she wont be fit enough to travel? i talked to my mums niece who is a medical lecturer, and knows a lot of people in the know, and will ask them if they know the medical reasons as to why DD wont be able to go, she did mention that it could be because of the way they will need to give her the treatment, or he's just being non committal. she is going to talk to relevant doctors on mon to ask more question for me, if i get no joy from them then i think i will just have to phone back to the consultant and ask myself, i hope it is just because of the way the drugs need to be administered and not because she is going to become so unwell she wont be able to go on holiday, the not knowing is worse than knowing.
obviously we will do what is best for our DD, who bless her takes it all in her stride, she says its part of her life and she wont let it stop her doing what she wants, although she has cut her work hours down to 32 a week, when she use to do 50, but apart from that she carries on as normal, considering shes been in pain for 18 months, personalty i think a holiday is just what she needs. even if she does need to use a wheelchair now an again as to much walking makes the pain worse.
Our dilemma is we have to cancel or transfer our holiday by 24th august. i can't see us having an answer from the doctors by then. the only thing i can think to do is phone my insurance company and see where we stand, as DD is insured for vasculitis, but don't want to do that till closer to the cut off point.
cal