Travel & other lifestyle changes

I'm wondering how everyone has accounted for ITP in their lives. We are trying to do the watchful waiting approach with my son, but that necessitates being near a good hospital that has ready access to IVIG (to which he seems to respond well). Do you only travel to places where there is good medical care and do you check insurance coverage ahead of time? Do you get "pre-treated" before traveling, just in case?

What other adjustments have you made to make it easier/more carefree to live with ITP?

PS Sandi/mods: sorry if i posted this in the wrong place - please feel free to move.

Hi Maria,

I think it really depends on what symptoms your son has, when he has those symptoms and what his counts are. How has the watchful and waiting approach been? What is your son’s baseline and/or how often does he need IVIg? Does he take anything else for the ITP?

For me, if I don’t treat, my platelets fall to zero. I feel unwell in the double digits, so keeping counts in the teens is not a good option for me. Whenever I travel, treatment and medical care is always foremost in my mind. I know about how long I can go without treatment and schedule my trips and treatment accordingly. That includes figuring out insurance coverage. If the trip is longer than a week, I either make sure I have a way to return home early for treatment if needed, or bring treatment with me which includes tranexamic acid. When I have moved residence, I have always researched hospitals and gone for treatment just prior to leaving. Sometimes when I have arrived at the new destination I have had to go directly to the hospital. The research done prior to the move or trip has always been worthwhile.

Making sure medical care is nearby and having all the necessary info ready, so you don’t have to think about it when/if the need were to arise seems a good idea. However, it really is up to you, your son (and other family members) and what you are comfortable with, what bit of routine you have found that works or helps you feel somewhat secure and how serious his condition is.

Where are you thinking of traveling to? Has his hematologist given you good information about traveling with ITP? It is good he responds to IVIg. Perhaps he can take something else when you travel so you can have more flexibility.

Hi b2h, thanks a lot for the response.
We are thinking of traveling to LA, near Wilmington NC (well, with Florence about to hit them , maybe that'll be postponed for a while), and Europe. I've found great pediatric hematology and infusion centers in LA and Wilmington respectively. For Europe, it's two different countries, and I'm still researching. Yes, it would be good to know if he responds to prednisone in case we need that in a pinch. At the same time, we're trying to avoid that road...
Thanks for bringing up tranexamic acid, I hadn't thought of that!

Hi Maria,

Happy to be of help

Tranexamic acid is my favorite! It really is amazing.

Sounds like you are all set for your LA and NC trip. You probably already have checked with your insurance, but for me, if I’m out of my insurance in-network area, it is better to go to an ER than an infusion center. In the past I have contacted hematologists in other states and they told me they wouldn’t treat me with Nplate unless I was an established patient. Sounds like your situation is different, which is really good.

Yes, prednisone would be the easiest for travel. If that doesn’t work, you could try Nplate or Promacta. Promacta would be easier than Nplate. However, if you find out that Nplate is the one that works, you may be able to get it for your trip to Europe. You’d have to ask your hematologist to write the prescription as such and then find out how much your insurance will charge. It may be too expensive. For me it’s about $400 per shot, so not really practical. Also, it needs to be refrigerated, like insulin, so you’d need to get an insulin-like travel cooler.

I think it varies, Maria. We once drove to NC from PA for a week at the beach when my counts were in the 20's. I didn't give a thought to nearby hospitals or insurance. But! I had Prednisone with me and I knew I responded to it. I didn't even think about platelet counts while I was there, but as I said, I had Prednisone with me.

Although I am not a huge advocate for steroids for kids, if this hangs on for a while, you could try a short trial with a semi-low dose to see if he gets a response. It makes travel much easier.