my 24yr old son has itp and has booked a plane ticket one way to new zealand for 2 years, havent got a clue about how things work over there

[julia1969]

his last bloods done today came back 40, his prednisolone had been dropped to 40 mg 2 weeks ago and his bloods have dropped with it! 2 weeks ago his blood count was 152, anyone have any ideas on how i can find things out about NZ and registering with a doctor and prices? dont know where to start, personally i think he is quite insane but as he is 24 ive also got to understand he is all grown up now! his itp came about after a medical was done to get his working visa for NZ about 4 month ago, been on 60mg of steroids for about 8 weeks and his bloods went up to 152 so he booked his flight! his steroids were dropped to 40mg for 2 weeks, went back this week and thats when his blood dropped to 40. he is devastated, as am i. wish i could smack his little bum and put him back in his cot for another 24 years! any help would be appreciated as we dont have much of a clue about this illness or what to do, thankyou x

[LisaJJ]

Hi - my son is 18 now, he's had ITP since he was 2, so I know what you mean about having to let them grow up but wanting to put them back in a cot, where you know they are safe! I don't know anything about NZ healthcare I'm afraid but he needs to discuss his plans with his consultant and see if there are other treatment options for him. I find that my son listens more to the professionals than myself even though they are often repeating what I have already said. I bet he is so angry that something like ITP is interfering with such exciting plans. You've obviously done a great job raising a son confident enough to spend two years in NZ so I'm sure he will also want to be healthy enough to enjoy the experience.

What you can do now is get reliable information from the ITP support association website - good luck, being a Mum is, at times, harder as they get older not easier! xxx

[sailor]

Hi Julia. Do not worry about your son, he is no doubt very street wise and providing he is aware of the dangers, I am sure he will be OK in NZ. If you join the ITP Support Association ( which is free ) there is access to a paper written by the most emminent haematologists in the UK,USA, Europe and Shirley Watson the COE of the Support Association, ( and I suspect down under ) which provides the necassary guidance on treatments and the drugs that can be used. They will also provide you with a lot more information about the condition and useful guides for dentists etc.

Ideally, he does not want to be on steroids for too long. Also do not place to much on the count, the important question is 'does he bleed'? With a count of 40 he is in a relatively safe zone and with a count of 50 most surgeons would undertake procedures.

On this site you will find there are many, like myself, with counts around 10, take no medication unless necassary, still have their spleen and live a normal life. Fatigue is sometimes a problem and varies from patient to patient, but this we work around. I also think that the Support Association should be able to provide you with names of consultants in NZ who specialise in ITP. Keep positive, do not worry, and look forward to your trip out there to see him and oh, your never to big or old to have your bum slapped!!.

[AnthonyHeard Administrator ITP Support Association]

Hello Julia,

I would echo much of what has been said already but I can add a little bit of information for you which may help.

The following is a link to the latest Consensus Report on the investigation and treatment of ITP. Your son may wish to take a copy with him or at least the link to the item on the internet as he can refer to it and show any doctors/specialists in New Zealand the details. As ITP is quite rare some doctors/specialists in the UK let alone other parts of the World are not always that familiar with it but the attached link gives full advise on how to diagnose and ttreat ITP. It has been drawn up and agreed by the leading experts in ITP so it comes with good authority.

The link is.... itpsupport.org.uk/docs/inte...

I would also suggest your son takes with him an Emergency Medical Card which he can order for £5 from the ITP Support Association see ...

itpsupport.org.uk/docs/emer...

One other thing he will obviously also have to bear in mind is Travel Insurance and if he emails the ITP Support Association on [e-mail] they can suggest insurance companies who are familiar with ITP. He can also email the ITP Support Association on the same email address and they may be able to provide details of ITP Centres who have ITP specialists in New Zealand.

The key really is having a full discussion with your sons UK specialist before he travels. The discussion must take account of his current medical situation, other medical history, the nature of the work he may be doing in New Zealand and whether your son plays any active sport. In the UK not all doctors/specialists are familiar with ITP so you may wish to have a consultation with one of the UK ITP Centres of Excellence who are specialist ITP people. The list of these is at itpsupport.org.uk/itpforum/... and you get a referral by asking for one from your GP or the specialist currently treating you.

Anyway, hope all this helps but one last thing..... I would definitely suggest joining the ITP Support Association as it has invaluable information and provides great support , see itpsupport.org.uk

[julia1969]

thankyou very much for all your help, going to sit tomoro and get in touch with, and chase up all the links you ahave given me, amazing! thankyou xxxxxxxxxxxxxxx