Hi, my 5 year old daughter has had itp for almost a year now with her platelet being below 10 constantly. She currently has over40 bruises on her legs some of which are huge,black red and very swollen. Is this normal or should we be bringing her to the dr. we have been given very little info on this condition and feel very isolated.
Are these bruises normal: Hi, my 5 year... - ITP Support Assoc...
Go to a hemo doctor, better safe than sorry!
You csn also see pdsa web site for info and join on facebook to
speak to other parents in this situation...
Lots of health!
Hello Julie, bruising , nose bleeds, gum bleeds and blood spots in the eyes, even blood in the urine and stools are clear symptoms associated with ITP. All these symptoms tend to appear when the Platelet levels fall below 20 albeit every patient is different. In young people quite often Platelet levels tend to correct themselves and so in many cases with childhood ITP the specialists try not to issue any drugs to treat it. However I would suggest that if your daughter is getting the level of bruising you mention that you see a haematologist/specialist ASAP. Very good general ITP information is available via the ITP Support Association in the UK itpsupport.org.uk and also the Platelet Disorder Support Association (PDSA) in the USA pdsa.org.
Hello again Julie, if you are based in the UK a list of the ITP specialists in the UK is available at the following website .....ukitpregistry/itpforum/abou...
Thanks everyone, I am based in northern ireland, we called the haematology dept to see if we should bring her up but they basically said there was no point in bringing her to hospital as they will notbe treating her unless she has a bleed, and the bruising is part of the condition. I did try to explain that the bruises are very big and still swollen but they were not interested unfirtunately. We do have an appointment on 6 april so I will let you know how we get on. We have also started taking photos of the bruising. I have joined the pdsa site also so thank you .
At the beginning people with ITP are confused, and feel isolated.Don't be afraid to kick up a fuss over this condition even though there is a chance that it could resolve itself. Insist that the GP does.another CBC and discuss what urgent action needs to be taken,if any.In the meantime get as much reliable information as you can through the ITP Association and PDSA support groups .It is possible to locate sufferers near you through this site if you are a member and remember we all support each other.
Good Luck, Kered
Thanks kered, she has been getting her plarelet taken every 6 to 8 weeks they sit around 4 most weeks ,she has had a bone marrow test in dec which was all clear, but we just feel that now that she has been diagnosed with itp the doctors think we are over protective. An example is she bumped heads with anither child in school and we phoned the hospital they said to bring her up to be safe, when we arrived her platelet count was 4 the consultant examined her by getting her to stick her tongue out and jumping up and down, we just felt stupid for needing reassurance.
Many ITP specialist consultants advise people that with a count below 20 to avoid contact sports especially when there is severe bleeding and certainly to avoid bumping the head.We all react differently but the ITP Association introductory booklet is an excellent start and what to expect.Many consultants have a wait and see policy, but with a consistent count of 4 I am not so sure. Somebody on the children's section on the PDSA discussion forum would probably give you good and reliable advise. Kered
Hi Julie im also from northern ireland my little boy is 5 he was diagnosed last may. My situation is very similar to yours once he got the the bone marrow test i felt like no one took it serious any more as it was only itp, i think you do feel very isolated and its so hard to see their little body covered in so many of theses bruises but if you are in any way concerned take him to the doctor.
Hi jill thanks for replying its good to know of someone else here in northern ireland. We have an appointment on 6th of april so we will discuss our concerns then, but I think im going to go to our own dr tomorrow, our children have had I ipt for about the same length of time, are your sons platelets going up ?
Hi Julie my little boys count stays under 10 he got up once to 110 after a dose of steroid and immunoglobin after he fell down the stairs but his count dropped again. what about your daughters has she ever responded to any treatment.
Hello again Julie, if you email ITP Support Association HQ on email@example.com they will advise you of the best option for you regarding an ITP specialist in Northern Ireland. With ITP it really is so important to see someone who specialises in the condition. As it is quite rare it does of course mean that specialists are also quite few and far between but as I say contact ITP Support Association HQ and they will give you the name of your best option.
In the UK the haematologists tend to treat the symptoms rather than the platelet count so being under 10 is fine as long as there isn't any frank bleeding, such as blood in the urine or maybe blood blisters in the mouth. Doctors may want to treat then. The other time they will treat a child is when the child wants to do an activity that requires a higher count, maybe if they are going skiing or something. Other than that they don't treat. Bruises are not considered to be a reason to treat.
Also if you are looking for an ITP expert make sure you look for a paediatric haematologist and not one who treats adults.
Hi toast thank you
My son is 4 and has just had a bone marrow test that was clear. We have been told by our haematologist that if he gets any bruises that we don't like the look of especially if they are big and swollen to contact the department.
You can't be too over protective when it comes to our children. Back when our son started getting bruises, I thought i was being silly worrying about them and ended up with a lot of trouble.
If you are worried nag them into seeing her, if they won't then take her to your gp. Anything to help put your mind at rest.
I am currently seeing my consultant on a weekly basis for my ITP. I visit my hospital three or four times a week and have done so for the the last few months. So if you feel your daughter needs medical attention then for your peace of mind take her to your dr or your hospital. There is no such thing as the right amount of times to have medical help - we are all so different.