2 yr old with ITP flying to USA from UK.

[ITPmummy]

The weekend before our little one was diagnosed with ITP, we booked a family holiday to Florida. The hospital are saying that he should still be able to go (count atm is 2) but we have 8 weeks to go yet, so anything think can happen! (Hopefully for the positive!) anyway our question is aside from taking out extra insurance to cover the ITP, what else would you consider useful or wise for us to do before this long haul trip? Many thanks.

[NickyD]

I don't think there is anything you can do before your holiday.

[virginiabranscom]

My doctors advise taking prednisone along on any travels. Also, I'd make sure to find out the hospital nearest to your destination that has hematology specialists, so that you can get labs done if your son has symptoms. I'm surprised, actually, that he's not on treatment to raise his platelet levels to safe counts (at least above 20,000).

[PKScott]

I have chronic ITP with counts below 40k and generally above 20k I've traveled a lot and the recycled air on airplanes and the large crowds in the public spaces are germ over loads for any healthy system, especially our ITP systems. I always consult my doctor and make sure I travel with Airborne tablets & an antibiotic in case. I do my best to keep to my self and cover my nose and mouth with a scarf. Keeping this mind, for a 2 year old... Talk with your pediatric doctor about a multivitamin with C and Zinc & a prescription your little on can take in case they get sick. Otherwise, well prepared ITP travelers can focus on the fun travel safe!

[karinsky in reply to PKScott]

I don't believe Vitamin C and Zinc will help if this child bleeds. 2,000 platelets is not enough to walk across the street. 20K to 40K would be fine to travel, but 2,000? This child should NOT travel with only 2,000 unless he is getting medication before travel.

[PKScott in reply to karinsky]

Ummm, ya missed the point of vitamin C and Zinc in the post there As we ITPers have learned, you are correct, those don't help with bleeds. Those would help with germs. Bleeds are better left for Individuals and their doctors wouldn't you agree... As well as making a determination for healthy counts for travel and other personal life choices. As we have all learned, ITP for each of us is different. We share the positive information the we have gathered, when someone asks a question, through our ITP journeys in hopes to help others along their way to make the best choices free of fear and stress. Our responses like our ITP are all different.

[karinsky in reply to PKScott]

Absolutely agree with you. However, what puzzles me is how this mother thinks she can travel with a young child with a platelet count of 2,000. I don't care who you are, 2,000 is not enough platelets to fly for any distance. I would get another doctor if he/she didn't suggest this child have prednisone before the trip.

[PKScott in reply to karinsky]

To each their own, you know. I, personally, wouldn't put my body on a plane for a holiday with a count of 2k. But that's me. I like your idea of a second opinion from a hematologist. I'd put my body on a plane home, with a 2k count

[ITPmummy in reply to karinsky]

I don't think I can fly with a count of 2000, our flight is in 8 weeks time, the dr says they can't see any reason why he won't be well enough to fly in that time. We WILL NOT be flying against medical advice, that would be foolish! The Dr expects his count to lift to a reasonable level in the next two months so we can just hope they are right. But you are correct at his current count he isnt allowed to walk on concrete or really do anything!!! Which is very hard for a two year old. Im just trying to forward plan and remain positive.... but constantly remaining in the our thoughts our trip has a possibility of being cancelled til our son is well enough. Which is fine, if that happens.

[ITPmummy in reply to karinsky]

I think you are possibly missing my other replies! I havent said I will be flying with my son with a count of 2k! Ive said that what was (when I posted the question originally) today he has had a new count done and its 7k... so all moving in the right direction. 8 weeks is a long time away, especially in the world of blood counts and platelets!

[karinsky in reply to ITPmummy]

Unless he is taking medication for ITP, the count can be so erratic there is no guarantee that they will increase or decrease. However, if he is indeed taking medication, then his count will elevate. .I am sorry, but you are right, I didn't read all your messages. I sure hope your child will be able to go on the trip. My hematologist had ITP as a child on two separate occasions and as an adult he is fine. I believe he took prednisone when he was a child

[ITPmummy in reply to PKScott]

Thanks for your advice, we have got him some multi-vitamins but will raise your suggestion with his Dr. Thank you for taking the time to reply to me.

[PKScott in reply to ITPmummy]

Absolutely you have fun, travel safe, and keep building positive memories!

[karinsky]

I agree with Virginia. Why isn't he on medication now like prednisone. Do you mean that his platelets are ONLY 2,000. That's outrageous if the doctors don't have him on medication and especially before travel. As Virginia said, he should have at the very least, 20,000 before travel.

[ITPmummy]

His count has been between 1-4, but today it is 7 (k) Im sure the hospital will say no closer to the time if it has not lift enough to be safe to fly, we have 8 weeks to go yet. He is on Transexmic acid (4mls per day). His count of 7k is one of his heighest since diagnosing on 21/01. Im not sure if those who having kindly replied are in UK or USA? As I believe USA treat ITP differently to UK? From the very basic knowldge i have learnt in recent weeks... please correct me if Im wrong.

[scaryteacher in reply to ITPmummy]

Having had my ITP handled by a mix of Brits, Americans and Belgians over the past 7 years, the Americans are the most cautious of the lot. Their 'critical' level for a platelet count has recently decreased from 50 to 40, whilst the Brits start to keep an eye at about 30-40, and the Belgians don't worry until about 10/ you're covered in bruises / bleeding out all over A&E.

As for meds, I only take them when I get really tired and non functioning, and that's about 15 for me, but it's a personal thing.

Hope you get to go, and that you have a great time.

[RHofm50129 in reply to scaryteacher]

I think you are mistaken. I am an American, diagnosed with ITP in April 2013. I have been told the critical count is 24.

[A_mom]

I hope your son’s count will improve before your vacation, so you can enjoy the time in Florida.

My son is much older, 14 years old, and the situation is different but just to give you an idea what the specialist here, in Toronto, considers safe for him. We discovered his ITP in Sep 2011 and at that time his count was around 22 K. Later he improved and these years he was between 31 and 70 K. He never had any treatment. He avoided contact sports but he’s doing swimming, windsurfing, ski and all the regular sports in the school. About 2 weeks ago he had a blood test after his annual physical exam and his count was the lowest we know: 18 K – and a throat/nose infection at the same time. We contacted the specialist at Sick Kids hospital for advice, especially because my son has a ski trip with his class next week, then a week trip in March break including USA. Doctor advised that he should not go to the ski trip if his count is not above 50 K, even he is a good skier. Without any treatment, we checked his count after 5 days and it was 51 K. That was a nice surprise. Even so, they gave him prednisone for 4 days (finished on Friday), and next week we go to see his count again.

Returning to your situation, is hard to keep a 2 years old child not running and actually you want him to enjoy the time as well. So I think a good platelets level will give you the peace of mind.

Regarding insurance: I called the company where I have insurance to see what the coverage is for my son out of the country if he has chronic mild ITP. He is covered for emergency treatment including pre-existing medical conditions, to the extent when it is safe to return home. So it is important to check with the insurer and be specific.

All the best for your son and your family!

[rjsmyth]

The biggest danger for us ITPers is an intracranial hemorrhage ((ICH) is a hemorrhage, or bleeding, within the skull). If you are an adult and have a count below 10 you are in danger of having one of these events - how much danger you are in depends on your prepensity to bleed. Some people with levels this low only experience bruisng and purpura others will bleed profusely from the gums, back passage, nose etc.

A count of 2 is extremely low and would result in immediate treatment being neccesary. One indicator as to the danger your child may be in is the fact he has been prescribed and asked to take Tranexamic Acid:

"Tranexamic acid is given to stop or reduce heavy bleeding. When you bleed, your body forms clots to stop the bleeding. In some people these break down causing too much bleeding. Tranexamic acid works by stopping the clots from breaking down and so reduces the unwanted bleeding."

Tranexamic Acid was prescribed to me to keep in the case of an emergency (bleed that will not stop).

I would not be travelling on a plane with a count of less than 50. Airplanes have pressurised cabins and this can add to ITP bleeding issues. Unless this trip is extremely important I would suggest cancelling and claiming the cost of the trip back off your travel insurance if you booked the trip before he was diagnosed.

I am sorry you are going through this with your child - take comfort in the fact that 80% of children go into spontaneous remission from ITP.

[ITPmummy in reply to rjsmyth]

Thanks for this info! His count was 7k on Monday and today has lifted to 57k, such a dramatic rise the Dr. Had it re-done and the result was 53k. Im guessing this is because of the Tranexamic Acid.... I wonder what will happen when its stopped. :/

[ITPAffecty in reply to ITPmummy]

Tranexamic acid is to control bleeding right, I don't think it helps to raise platelets...!! But very good to see him getting better..

[ITPAffecty]

As per my experience. At one point (at the age of 25) I had stopped going for blood tests or taking any medications when my counts were still hovering below 10k. And I have travelled from India to USA(in those 3 yrs) to and fro many a times with count below 10k (I guess them based on my bruising level). I used to keep Tranexamic acid just to control periods bleeding. Due to heater and Air conditioning, I used to have minor nose bleeds, else I was fine.

But definitely risky with a 2 yr old.!! Wish him get better soon.!!