Daughter recently diagnosed

Hi, My daughter Ashton was recently diagnosed with ITP. Last week I noticed some petachiae on her neck one day. A few days later it showed up on her face, chest, back and other spots all over. We were on vacation so I waited until we go home on Sunday night to call the pediatrician after reading online what it could mean. I was very nervous because my daughter was recently in the hospital around mother's day, with bacterial septicemia and pneumonia. She has asthma and allergies and has had a lot of problems yearly with pneumonia. So I was worried this was somehow related. We went to the ER where they did a blood test and found out her platelets were 6. We spent the night in the hospital and the next day were sent to Hershey medical center to the hemotology clinic. The hemotologist recommends that we wathch and wait with weekly blood tests for now. All of her other counts were normal. I can't help but worry that we should be treating her to get her counts higher. I am a nervous wreck!!!

Hi,

Yep, nervous wreck probably describes where we all were early on too! And on top of all your daughter's other medical problems too!

ITP is a horrible condition, but in most cases, the worry is worse than the illness itself. In the UK, I read that only something like 20% of children are treated these days, and the rest do watch and wait. It certainly works for my son, and I moved from wanting him treated, to being quite anti-treatment. He had counts of 1 and didn't get treatment.

Find out about the symptoms of a head bleed, make sure that you are "watching" carefully for other symptoms and that your daughter knows what to look for and tell you about. Do sensible things like getting her a medical ID band, making sure she knows what PE she can do and what she can't. Then try to switch your worry dial down a bit - ITP is a real nuisance, but for the overwhelming majority of kids, thats ALL it is.

Good luck with the next count

Ali

Thank you for responding Ali. It is so nice to hear that we are not alone and that others are not treating as well and are doing fine. We are supposed to leave for the beach on Monday after her blood work is done. I am nervous about traveling away from the doctors here. I know the hospital in the area we will be, my husband says it will be fine. I can't help but worry we should wait to see her levels before leaving, but I guess it won't change anything. Would you travel with levels this low?

Lori

Hi Lori

There aren't that many kids doing watch and wait on this forum, but I think that is because most of the ones who did that had the acute version of the illness and have moved on. DBishop (Deanna)has a son who is doing watch and wait for most of the time.

Not sure I can answer your question about holidays, because it depends on whether Ashton has any bleeding (other than the bruising and red spots). Yes, I would, but Dougie doesn't have any problems with bleeding, so I am quite relaxed about things.

Dougie's count sometimes varies wildly, but we went on holiday to Spain last year, and Dougie's count was probably around 0-5K the whole time we were there. I worried more about people thinking we were child abusers because he was absolutely covered in bruises than I did about him having medical problems. He is going on an adventure holiday next weekend and I reckon his count will be about 20-30 by then. His consultant is happy that he will be safe. We are also going on holiday to Greece in August, and I am happy that everything will be ok.

If you are going to be near a hospital you should be fine. When we went to Spain, Dougie's consultant wrote a letter that we took with us with his history and details in it just in case. We made sure that we went to a resort near a decent hospital too.

Anyway, I am sure that a holiday is just what your family needs at the moment. Hopefully you will decide to go, and I hope you have a great time without any ITP drama!

Ali

We did watch and wait for almost the first full year. It was a little nerve wracking just because of the symptoms, but I did learn to "accept" it. But then she got hurt (very active girl) and was covered in petechaie and had a bloody nose that lasted a while. Her hematologist was just not comfortable doing the watch and wait from that point on and we weren't either.

Go enjoy your vacation. What kept us more at peace was knowing where the closest hospital was and finding out who the hematologists were in the area before we left. We also had a note from the hematologist with a phone number for them to contact in case of emergency. We've taken numerous vacations since she has had ITP and not once have we had to visit the ER.

Our hemotologist seems fine with our vacation plans and said to leave regardless of the next results. He told us to keep close eye on her symptoms especially headaches, vomiting and other obvious signs of bleeding. I am definitely feeling extremely protective of her, I think my hubby thinks I am losing it! He is way more relaxed than I am about what she should be able to do. Our pediatrician thinks she won't be able to start Cheering next week unless her counts are up by then. I have to agree, at least up to 30,000 would be nice. I don't know how you all have been coping with this for so long. I can only go a day at a time and I find myself crying even when I think I am in control of my worries. So much for that! Thanks for all the advice, I am clinging to every word!

If the doctor has no problems with you going away, then you should go. She will be fine and you should all just try to relax and have a relaxing holiday. I know that is easier said then done sometimes, but u all need to de-stress and get relaxed, u all deserve that. If u r concerned, just make sure u go somewhere close to a hospital, and have a letter from her doctor, but she will be fine. As much as u can't help but worry, it will make her worry too cause she will sense how u r feeling and stress doesn't help, in fact stressing can make her condition worse. My platelets seem to drop more when I am stressed about things.