Son recently diagnosed with ITP

[firsttimer2007]

I was planning a trip to US Harry Potter and Disney in October. I already booked a House and was planning to purchase the tickets this week (before the prices go up)

2 weeks ago my 11 yo DS was diagnosed with ITP (Idiopathic thrombocytopenic purpura)

Now what do I do???

What would you do?

Any advise or tips?

 

[Cheshire Figment]

What is ITP? How does it affect him?

Without knowing, it is difficult to answer questions properly.

 

[Alexander]

ITP as in the platelet blood clotting ITP?

I don't know anything about it, but wish you all the best and would suggest talking to his doctors/specialists.

 

[firsttimer2007]

I spoke with the doctor and we will be unable to plan anything since we have to wait to find out what his platelet count is before he does anything. I hate not knowing anything. It is really scarey. I was hoping someone knows something about this and could tell me more about how it works.

His platelet count has been as low as 1,000 and the last test after Ivig was 335,000.

He does not want to have the Ivig again, as it made him very, very sick.

I have looked and looked and can not find out how much the platelets drop after the meds wear off. If it is 1/2 then he will still be okay. If it is more then...???

He really wants to go to the Harry Potter thing and I don't want to have to tell him "no" He is already dealing with so much. I also do not want to put him in danger. I will tell him no, if his platelets are to low.

However, If the ticket prices go up that will effect what I budgeted for this trip.

So what should I do. Buy the tickets and hope everything is okay or wait and buy them at the gate?

 

[gamomof2]

Our daughter gets IVIG but for another reason. Also at a much lower dose. But the same side effects can happen. So here are some thoughts. Run it at a slower rate, IV fluids before and after infusion. Premedicate with antihistamines (IV Benadryl) and steroids (IV Solumedrol). Running at a slower rate might involve a longer hospital/clinic stay but it isn't such a shock to the system.

I hope you get to go. Also I hope the ITP resolves.

 

[DisneyElf]

My sister had ITP in 2005 so I do know what platelet counts should be.

Normal 150,000 to 350,000.

Low Safe - 50,000 - but no jarring rides -


I do know another child that had this and recovered with no lasting effects. My sister ended up having her spleen removed (once they checked that her bone marrow was producing platelets) and is now fine too

 

[firsttimer2007]

Our daughter gets IVIG but for another reason. Also at a much lower dose. But the same side effects can happen. So here are some thoughts. Run it at a slower rate, IV fluids before and after infusion. Premedicate with antihistamines (IV Benadryl) and steroids (IV Solumedrol). Running at a slower rate might involve a longer hospital/clinic stay but it isn't such a shock to the system.

I hope you get to go. Also I hope the ITP resolves.

Thank you gamomof2 I hope we get to go too. What is the rate your daughter gets of the IVIG? MY DS got it at 87.5 they wanted to bump it up but I said no. This was his first dose so I did not know that much about it. I figured anything that paralized the spleen could not be that good for you though. I had not planned on giving him meds but he got a nosebleed that would not stop. I hope he does not have to have it again. I also hope your daughter will not have to have much of it either.

 

[firsttimer2007]

My sister had ITP in 2005 so I do know what platelet counts should be.

Normal 150,000 to 350,000.

Low Safe - 50,000 - but no jarring rides -


I do know another child that had this and recovered with no lasting effects. My sister ended up having her spleen removed (once they checked that her bone marrow was producing platelets) and is now fine too

Thanks DisneyElf! It is good to know they can recover. I am so ready for recovery.

 

[bopper]

For Disney you could buy the tickets with teh non-expiration option. That way if you don't use them you could use them another time...or if you need to take a "day off" during your vacation you don't waste a ticket.
I am not sure how Universal tickets work...find out if they "expire" or not.

 

[firsttimer2007]

For Disney you could buy the tickets with teh non-expiration option. That way if you don't use them you could use them another time...or if you need to take a "day off" during your vacation you don't waste a ticket.
I am not sure how Universal tickets work...find out if they "expire" or not.

I bought my tickets!

Mapleleaf ticket is offering a special that for $131 you get 7 days. If you never use them then they do not expire. So if we have to put off the trip completely, I can use them later. If we use 2-3 days then I got my monies worth.
Disney tickets are a dream. No expire makes it so we can go or not go. If he needs to sleep all day he can. If her gets sick...well you get the idea.

Thank you all for your help. I feel a little less paniced now. I guess I am starting to come to terms with this.

 

[Eeyore'sthebest]

There is supposed to be an excellent pediatriac hematologist in NYC. I want to say at Columbia? This person is supposed to specialize in pediatric ITP. Speak to your doctor. My friend has had ITP for years. And her doctor is happy when he can get her results to stabilize even if they are on the low side.
Good luck with everything.

 

[dvcterry]

take things one day at a time~your son and his health is most important. my son is an ig patient also, different diagnosis, and he was diagnosed a few years ago. if he is not well, or counts not where they should be we make adjustments (including staying home). family first. I would discuss your plans to travel with your son's doctor for a care plan. If you travel, be sure to know his ivig infusion in case of emergency i.e. Gamunex, dose, and rate of infusion in the event it has to be administered while on vacation. Also the premeds he takes. I hope your son does well and is able to enjoy Harry Potter.