Newly diagnosed 15 year old and travel dilemma

Hi my name is Shelley and my 15 year old daughter Tailor was diagnosed June 20 with ITP. Her levels when diagnosed were 31,000, 3 days later 48,000 then up to 61,000 and now down to 44,000 with her WBC down as well. Tailor has had to stop playing hockey which she loves and this is breaking her heart but it is what it is and we were really hoping her levels would continue to rise and she would be safe to play in September which would be the resumption of her regular season.
Now, the real dilemma for us is our upcoming trip to Sweden\Norway. After her levels dropped yesterday I spoke with her internist down in TO who said she advised against travel because she thought this would be deemed a pre-existing illness and we would not have coverage. In the last couple of hours we have investigated this through our benefit companies who have informed us that neither of our European coverage packages have a pre-existing illness claus so we would be covered as long as the doctor deems her fit to travel. We are really at a loss of what to do. This is so new and of course, seeing the platelets rise we felt the would just continue to do so BUT reality has hit and who knows what next weeks count will be. We are to leave on July 17 and yes we do have cancellation insurance. Any thoughts would be appreciated!

Hi Shelley,
What do you mean her WBC count is down too? Down to normal, or down abnormal? With ITP, the ONLY blood indicator should be the platelets. If other numbers are out of whack there could be something else going on. Has the doctor run tests to rule out other diagnoses?

Is your daughter responsive to prednisone? One idea is to travel with prednisone and if she shows signs of dropping counts, or even preventatively, have her on a moderate dose of prednisone. Also your destination countries should have pretty good healthcare available, so maybe travel with a note from your doctor with some medical history and if you need a doctor you should be in good hands.
Good luck,

Erica

Thank you for your response. Tailor's white blood cell count was at 3.7 as of Monday. Our doc does not want to treat with anything unless levels go below 30,000. There was mention of possible further investigation being done because of the drop in her wbc count.

Shelley

Shelley,
I have only ITP and my white count follows my platelet count. My hema treats my platelets and my whites follow along. The lowest my whites got was 1.3 I had cellulitis (skin infection from eczema) at the time and was hospitalized. My whites were 2.3 a couple of weeks ago. And my Dr simply put me on prednisone to up my platelets. (I just finished a 4.5 year remission.) Of course when you're on prednisone then the white count is messed up and has no meaning. But since I have had ITP for more than 5 years, my Dr knows what to expect from me.

Your daughter on the other hand is new to this, and no one knows how she will react. I think a long talk with your hema would be good. You could consider taking prednisone and an antibiotic with you in case something comes up. You still have a little time to decide.

PS The low whites really haven't made me any sicker.

You could also post in the Parent's section; they have experience with this sort of thing.

I agree with Erica though - if you knew that your daughter responded to Prednisone, she could treat with that while she is gone. Many people (especially teens) treat so they can continue their lives on special occasions. Will she be gone for a long time? Her counts are quite safe right now, but not knowing if she will drop since she is new to this might be scary.

I'd suggest talking to her doctor about it. Normally, people don't treat below 30 but sometimes exceptions can be made. It's easy to just say "don't go", but not very fair! Some doctors do believe that people should be able to continue on and will try to accommodate that. If she started it this week or early next week, you'd know if she has a response pretty quickly.

Only you can make the right decision for your family, but considering the whole situation may help. When my teen was diagnosed, most docs treated only below 20,000. Now, many are waiting at lower counts. You don't say whether your teen is a bleeder/bruiser. (It may be too early to know.) I think a talk with a hematologist is in order. (Most general docs don't understand ITP and it freaks them out.) The steroid suggestion was excellent advice, as long as you think your daughter will respond. (It can make for some irritability, however.) You say "our trip," so I am assuming you are traveling with your daughter. That's a factor in favor of going. I don't think I'd send her on a solo trip with newly diagnosed ITP. Another factor in favor of the trip is that you are going to countries where good medical care is readily available. Are you going to wilderness areas in those countries, such as overnight hiking trips? If you are staying within reasonable distance of hospitals, then you're probably as safe there as at home. When my teen was first diagnosed, it seemed to me that Europe, especially Scandinavia, was a bit more advanced and forward thinking in the management of ITP than was the US. In fact, I told my friends if they heard I sold out and moved to Sweden, they'd know I'd found our cure. Of course, there was no cure, but there was remission. I hope your daughter remits as well.
Norma

Thanks everyone for the great responses. This really helps me a lot. Tailor's initial symptoms were 4 significant nose bleeds and then bruising all over the body. She has felt pretty good up until this past weekend when she faced her first menstrual cycle with this. That was a bit of a nightmare but we have dealt with it and hopefully we have come up with a good resolution to that.
In terms of travelling, yes this is a family vacation and yes, I don't think we could be going to better places in regards to the level of health care in Sweden and Norway. I will chat with the pediatric internist today and I pray that she deems her safe to travel because she really needs this little pick me up!
Thanks again, I am really glad I found this forum-it has been already taught me a lot about ITP.

Shelley and Tailor

Everyone has to make their own decision, but I have traveled a lot with low counts. If your daughter's counts remain in the 30s or 40s, I wouldn't hesitate to make the trip -- sounds like she hasn't had much bleeding with those counts. I agree with Erica's suggestion about taking a treatment with you.

My wife & I along with friends have just booked a trip to travel to and around South America for 1mth plus. My counts are in the 50'/60s and my Doctor says go and have some fun.
He also wrote a note to the Insurance company before they agreed to give me Travel
Insurance.

The insurance company charged an excess fee on top of the normal price.
However the policy cover is up to a Max of $100,000. for any ITP treatment needed.
I have also agreed to pay the first few thousand dollars on any claim made. We are retired and feel the need to watch our money is important. But for the peace of mind knowing we have insurance will give us. We felt our trip would be much more relaxing and fun, which seems to made the extra expence worthwhile.

I don't know if you have travel insurance, but it is possible to get as I found, and may increase the enjoyment of your whole trip.
Wishing you all a most enjoyable trip and plenty of platelets for your 15yr old daughter.
Benny.

Again, thanks to all for replies. In terms of Tailor's last count we were sitting at 37,000 and the wbc had gone up a touch. I am having a terrible time connecting with the pediatric internist, it is a very frustrating situation as she does not have an office and works out of a clinic at her hospital.
So, as of Friday our family doc and I decided we will see what her levels are at on Friday before we make our final decision. We have also gotten some granules from a naturopathic doctor who worked with another girl in town who had ITP as a small child. I think I mentioned before that we are covered in terms of health insurance and our doc has decided to send a 2 week prescription for prednisone. If we start to see symptoms we will find a lab and get a blood draw to determine if we will need to start meds. It appears so far that we start to see bruising when she falls below 40,000, I feel better about things now that I am getting to know her body.
Hoping so much that we can go and have a great time on our family vacation!

Shelley

I hope its not with Age Concern because my travel insurance has been with them as very good with ITP until this time. It not the ITP that they are saying no to

but telling anyone who has been significantly on steroids that they are saying a flat out right no. There has to be a year gap of taking them before going abroad.....

No holiday abroad for me for at least a year.

Do not know if other holiday insurancers are going to follow suit in due time:sick: :evil: :evil:

Travel insurance issues and pre-existing conditions have been challenge to me. This industry is one that still seems to be very nationally focused in an increasingly globalized world. You are to be congratulated Benny for trying to find you way around the maze and succeeding. As an expat Kiwi and ITPer about to relocate to NZ can you please tell me the name of the company that you have insured with?