Worried mam

[dollydan]

my daughter ruby is 11 was diagnosed with itp in February this year...went in to hospital with a 0 platelet count and hasn't risen since...we are seeing a specialists at the heath south wales on August the 8th... Anything any one can offer me i would appreciate.

[sailor]

Hi Dollydan. If I dare use the term, children can often develop ITP and then a few months later, go into remission and let us hope this is the case with Ruby. It is a rare condition but can respond to treatment, usually starting with prednisalone. This is a steroid and can produce good results. Like all meds, it will work with some people but not others, so I am sorry to say it is a bit trial and error. Don't be alarmed by this. Whilst it is worrying, it is quite normal.

There are many different medications available and if you look at the ITP Support Association web site - linked above - you will find a whole lot of very good information and advice which is accurate and upto date. There is also a list of centers around the country where there are specialists in ITP. These are haematologists within NHS hospitals and their addresses names and addresses are there. ITP is a rare condition and you cannot expect all haematologists ( or doctors) to know everything. There are so many blood conditions, it is impossible so if you have any concerns, a second opinion is always an option.

Finally, one of the ITP support association medical advisers from the USA said at a convention " ITP is worse for the parent than the child, they worry more"

Good luck and keep us posted, but do join the association, look at the website and if you have any questions, email or phone them.

[NickyD in reply to sailor]

Hi Dollydan, i agree with sailor. You worry for others. I have had a count of zero a few times and i am still here. I tried 7 treatments before finding one that worked for me. there are lots of people out there wanting to support and help - use them - go on the website. Take care. NickyD

[Bellazac1971 in reply to sailor]

Hi Sailor.... You raise a really good point about the variance in knowledge and understanding about the condition. In one 24 hour period we received 3 completely different perspectives from doctors , all doing their best for our daughter at the time but sadly just causing us greater concern and confusion. I have set up a chronology so that I can write down what each professional says about our daughter as we can then highlight variances and seek clarity.

[Pzena]

Children sometimes recover from Itp, and no longer have the condition. It is sometimes caused by a virus in children. So hopefully, this is the situation with your daughter. I have been diagnosed with Itp for the last 8 yrs. and it can be frustrating because there is no single treatment that works for everyone. They use to jump to remove the spleen, but the new treatments are steering away from that now. (I live in the us). I treated with prednisone on and off for 8 yrs. recently I was having to take more and more to stay in my safe range 20,000+. I did not let them treat unless I was under 20. I did not have any bleeds until recently. So I finally agreed to another treatment rixtuxin. 4 infustions. Seems to be working, but takes time. It is a trail and error condition. Did your daughter have any bleeds, nose bleeds etc? Don't panic. I know this must be very scary for your family. But there are more and more treatments, and she should be able to leave a normal life, but will need to be careful with sports But don't give up hope she might get over it completely. It does happen in children. The association is great with help, so please call them with questions. Our prays and thoughts are with you and your family

[Bellazac1971]

Hi Dollydan- sounds like we are in a very similar position regarding timelines etc. Our daughter is 12 and after a routine blood test 2 weeks ago we suddenly received an emergency night time phone call and had to take her into hospital. Count was 10, further test was 13 and this week it was up to 19. She was also taking Propanalol for something else and we quickly discovered that in rare circumstances this can contribute to reduced platelet production! I know the worry that we are going through and I can only imagine that you will be thinking all of the same things that we are. We also have a much looked forward to holiday in 2 weeks and don't know if we can go as it involves a 2 hour flight. Our daughter is currently in the "watch for 6 weeks" period.