dejavu

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

I doubt the consultant would share any more information with you as your daughter is an adult. Honestly, I'd talk to her about the deadline for losing the deposit and ask her to make a decision based on her doctor's recommendations in the next few weeks. Assure her you will go another time if she does decide to cancel. Of course holidays are brilliant, especially if you've been unwell, but it would be awful if you went and she was too unwell to enjoy it.

hi kath2003, yes we have talked about it, she wants to go, which is why im trying to hang on before making a decision.

Doctor has said he cant tell us for at least a month which takes us over the cut off point. so unless he can give us more info on why DD might not be able to go it wont leave us with any choice but to cancel. trouble is we don't know if he is just being cautious, and worrying us un-necessarily.
cal

I'd have your daughter call her travel insurance company and see what they advise (i.e. what they would pay out after the deposit deadline - given that she knows at this stage that she may not be medically cleared for travel).

If they say that she won't be covered if she doesn't cancel (which they may - she's had reasonable notice that she may not be fit for travel), then that's her decision made.

You'd then have to decide whether to proceed with your trip (and I'd check your own travel insurance for what they'd pay out in the event of cancellation since she is not a minor child in your care).

I am sorry to hear about your daughter - but also trying to offer some practical advice.

hi kath2003,thank you for your advice, i do appreciate it. its a family insurance policy as DD still lives at home with us, i think you are right, think we need to inform the insurance company and see where we stand. but worried they will force us to make a decision before we are ready too as there's no way we would go without her, its sad as this was our last planned holiday as a family.
cal

CAL2 said:

hi kath2003,thank you for your advice, i do appreciate it. its a family insurance policy as DD still lives at home with us, i think you are right, think we need to inform the insurance company and see where we stand. but worried they will force us to make a decision before we are ready too as there's no way we would go without her, its sad as this was our last planned holiday as a family.
cal

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So sorry your in this position and for your daughters pain. Can't offer any advise, just wanted to wish you all well.

thank you stephensmum,

cal

@CAL2 - I have been reading both your recent threads. I cannot offer you any advice, but I hope everything gets sorted and you are able to reschedule. While it can be a nuisance, as well as upsetting for your DD not to go as originally planned, I hope everything works out well and you have a fabulous time whenever you finally get to WDW!

LiquidSunshine said:

@CAL2 - I have been reading both your recent threads. I cannot offer you any advice, but I hope everything gets sorted and you are able to reschedule. While it can be a nuisance, as well as upsetting for your DD not to go as originally planned, I hope everything works out well and you have a fabulous time whenever you finally get to WDW!

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hi liquidsunshine thank you for your kind words, i know we will get there either as planned or next year, its just a shame we don't have more time to make a decisions, i'm thinking it would be better to re schedule for next year.

we have until 23rd August to make a decisions, if DD gets her way we will still be going this year

Hi Cal

I look after vasculitis patients and although I can't give advice that is specific to you, I can give a few general pointers.

As has been said above the consultant won't speak to you for reasons of confidentiality. I'd suggest that if anyone contacts them, then it is your daughter, to explain the situation, but even then without biopsy results they are unlikely to be able to give a definite opinion either way. Having said that, you have a couple of weeks left to make the decision anyway.

If vasculitis is confirmed, either as a flare or as a different type, then your daughter may need some fairly high powered treatment. A lot of vasculitis patients get chemo-type treatments fortnightly for several weeks, and if she was unwell enough to need that, then it probably wouldn't be sensible to go - if you went between treatments and she became unwell in the USA, you might not be covered by insurance, and the medical bills for this type of thing are crazily expensive. Addenbrookes use a lot of a medicine called rituximab, which gives fewer side effects, but still needs to be given in more than one dose.

Having said that,the treatment may well be steroid tablets rather than "drip" treatments as above.

I'd encourage your daughter to get in touch with the vasculitis team (I am assuming that as you are talking about Addenbrooke's she is under David Jayne's department, and they are usually pretty good at keeping their patients in the loop).

Best wishes and hopeful thoughts.

hi Disney2014, yes DD is under David Jayne, the thing that worried me was we saw him last month and he said nothing about it being a different strain, he just mentioned that it is unusual for it to come back after 5 years in remission and quite unusual to get it in the nose (she has it in her legs as well) DD is on steroids and mmf and pain killer.

this visit we saw a different consultant and are being told that it may be a different strain and she may need different treatment, as you said chemo type meds.

i did phone back and talk with the consultant, i told him i was worried that his reason behind DD not being able to go was he thought she was going to become sicker and the new meds would make her feel worse because of side effects. he reassured me that that was not the case, but because of reading her past records and how long it took her to recover last time.although by the time we go she will have been on her current meds for 4 1/2 months. he is also worried that because her immune system will be suppressed she will be susceptible to viruses and infections for which she will need hospital treatment for whilst on holiday. we already have our holiday insurance which includes DD vasculitis, and they have said she will be covered on the policy as long as she has a letter from her doctor stating she is fit and well to travel.

at the moment DD is still working 32, shopping and going out with her friends, although she does get tired quickly, cant walk great distances, and is in pain, both with the vasculitis and cluster headaches which isn't helped by the fact that she cant wear her glasses because of the nodules inside her nose, ( the pressure of her glasses make it to painful) but when you talk to her she says this is part of her this is what i deal with and i'm not letting it dictate my life, she always was a strong willed child lol.

so at the moment everything is up in the air, we have till 24th to cancel DD next appointment is 28th !! so i really don't know what we will do.

sorry for such a long post but it helps to get it all out i'm so confused and worried.
cal

Hi Cal

Glad to hear you got to speak to the consultant. It might be worth explaining your situation and asking if there is any way that you can get the results by telephone by the 24th. If one of my patients was in this situation, then I'd try to do this for them - of course depending on what test results he is waiting for that might not be possible - but hopefully your insurance should cover cancellation if it's due to the vasculitis.

I agree it would be unusual to get a different type of vasculitis, but if there is one thing I have learned, it's that patients don't read the textbooks! Best of luck.

disney2014plan said:

Hi Cal

Glad to hear you got to speak to the consultant. It might be worth explaining your situation and asking if there is any way that you can get the results by telephone by the 24th. If one of my patients was in this situation, then I'd try to do this for them - of course depending on what test results he is waiting for that might not be possible - but hopefully your insurance should cover cancellation if it's due to the vasculitis.

I agree it would be unusual to get a different type of vasculitis, but if there is one thing I have learned, it's that patients don't read the textbooks! Best of luck.

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hi as of yet DD still has no appointment through for the dermatology department, so i don't hold out much hope that the biopsy will be done let alone have the results before her appointment,DD as DD appointment is now on the 21st Aug, so fingers crossed they will be able to make a decisions by then, with or without the biopsy results if not we will have no choice but to reschedule, which would be disappointing but DD health comes first. i just know she will be so disappointed if they say no.
thanks for your advice and letting me get it all out, it has helped me get it clear in my head, it is much appreciated

cal

Glad your dd app was brought forward. I have my fingers crossed for you.

All change again, DD received new appointments in the post this weekend to see 2 different consultants on 7th Sept as well as the one on 21 Aug.
phoned them this morning and explained our predicament to a really helpful lady who went and talked to the consultant and phoned me back with appointments with all 3 consultants for this fri. . who will then get together after clinic to discuss and make their decision as to weather DD is fit and well enough to go to Disney. i hope its a yes not just because we have waited 4 1/2 years for this holiday but to give me peace of mind that the Dr have confidence in their treatment of DD and see her well on the road to remission by then.

cal

Good news!
Hope all goes well - I have my fingers crossed for you.

disney2014plan said:

Good news!
Hope all goes well - I have my fingers crossed for you.

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thank you

DD had her appointment today and was told no to holiday this November, which is sad, not because we have to cancel our holiday but because he thinks it will be spring next year before DD is on the road to recovery, bless her

cal

Sorry to hear this Cal, but hopefully with a doctors note, you should be able to reschedule and go back at a time when your daughter is well enough to really enjoy it - and you will be able to relax and enjoy it more without worrying about her.

Sorry to hear this but glad you have had the appointments so you know what us happening with your daughters health. I do hope she is soon well enough to enjoy planning a new trip to disney.