worried parent

hello
my daughter has just been told she has ITP, on saturday had a blood test which gave her a platlet count of one! tested today and its higher at 7 but im still worried. her mouth was full of large purple spots and also her legs, mouth clearing but legs not so! even iching leaves her with a bruise.

my local hospital are trying but dont seem to know what to do, not sure but seems they have a she will grow out of it herself attitude! is this normal? or is treatment usauly given?

thx

I understand you are scared. Went through that as well. 15 yr old son diagnosed in Sept. with platelets of 9. Was in Hopkins hospital for 4 days. Was finally given one dose of IVIG and responded very well. Platelets went all the way up to normal at 218, but have steadily decreased and are now back down to 43. Had gone down as low as 23, but went up some on their own.

It is scary and a roller coaster ride. Hopefully your child will respond well to treatment.

hi gazza,

you must be really worried its a hard disease to understand as i have only had it for 9 weeks and also had count of 1, but i believe kids have really good chance of getting better themselves whithin 6 months and the outlook is pretty good the people on this site are really good and im sure they will give you some great advice/ support which sometimes you dont get from your doctors or hospital .
hope all goes well for your daughter

How old is your daughter? Treatment options differ for children and adults.

hi guys
thank you for your replys

for sandi
shes 14

just seems weird to me from the replys here and what i have already read on other websites how she was never taken into hospital! just the blood tests and off you pop come back tomorrow for more tests.
for some reason getting the idea my local hospital (in Hull UK) dont have a clue what to do! even had to ring a hospital in another city to get advice!
im not sure if its correct but i read on wiki that any platelet count under 10 was classed as an emergancy and should be admitted into hospital instantly?

so to be sent home with a platelet count of 7 with a see you friday confuses me :huh:

thanks again

Garry

Hi Gazza, I'm from the UK too so coming from the same perspective. We don't treat children in the UK very much as they do well without treatment. We also don't usually take children or adults with low counts into hospital unless there's severe bleeding that needs stopping. I've been at a count of 1 several times and just gone back to work. I do tend to bleed a bit at low counts though so do get treated.

Haematologists who have little experience of ITP seem to panic and would treat far more aggressively so it sounds as though your doctors do know what they are doing. A good haematologist will treat the symptoms and not the platelet count.

Ali on the children's part of the board is a UK parent who doesn't treat her son. She would be able to give you more relevant information.

By the way, have you heard of the UK ITP Association www.itpsupport.org.uk/ . Conference for patients and parents is on the 16th April if you can make it. The programme includes a talk about childhood ITP www.itpsupport.org.uk/convention.htm

Hi Gazza

I was born in Hull - well, North Ferriby to be precise!

Ann is right that UK paediatric doctors are far less likely to treat ITP than their US counterparts. I think I've read somewhere that 80% of children in the US are treated and in the UK, the figure is less than 20% (can't remember the exact figures, but they are in the right ball park anyway). There is no difference in outcome between the two approaches. Low counts are liveable. Its not necessary most of the time to treat, and the treatments are all pretty horrible and mostly temporary. Its possible that your daughter may have problems with her periods at that count though, so that might provoke treatment.

My son was admitted to hospital overnight initially, but I think that was only because it was so late by the time we got through the mess that was A&E at Leighton Hospital that night! He was discharged with a count of 7K, and didn't budge over 20K for the next 6 months.

Kids do usually recover quickly from ITP, but in if your daughter isn't one of the lucky majority, then she can still lead a normal life. My son is currently bobbing along at 10-20K (after a brief but very welcome jump upwards a few weeks ago). He has a really normal life, plays football and basketball, rides his bike, goes to school etc. The only times he has ever missed school due to ITP have been to do with blood tests and doctors appointments even though he has got down to 1K on a few occasions. He sometimes looks as if he's been beaten with a cricket bat, but thats probably not a big deal to a 12 year old boy.

Try not to panic too much - the fear of what can happen is way way higher than the probability of it actually occurring.

Good luck, Ali

p.s. Forgot to pass on two good bits of advice that I received

a)don't concentrate on counts, worry about bleeding instead.
b)learn to count in 10s or 20s - any figure under 20K is pretty much the same as any other.

Gazza - you may want to post in the parents section. Parents can give you better advice.

hi all

thank you so much for your replies and advice, its been a great help.

put my mind at rest somewhat

thanks again

Garry (gazza)

Hi Garry

I was thinking about your comment about having little confidence in the hospital because they had consulted another hospital.

Your hospital did exactly what I would expect to happen. A local hospital may only see ITP in a child once a year or so - its quite an unusual condition. So they won't have any expertise, and rightly therefore, should consult with someone who does. I would have thought that was good! What happened with your hospital is also what happened with my son -the local hospital took advice from Manchester Children's Hospital where they have a paediatric haematologist - from what I can see, these doctors only work in very large hospitals or children's hospitals. My son ended up being referred to that haematologist eventually, when the local hospital decided that the ITP wasn't just going to go away by itself.

Is your daughter any better yet?

Alison

hi Alison
i am not denying that a hospital should not consult another for imformation, at the time i did not realise how rare this thing is! so not really knowing to much i thought it was odd not to have a doctor who knew something about it in local (major) hospital.

still learning

Sandi if you would like to move this thread to the right section pls feel free, i dont know how

wish us luck, blood tests today

i can not thank you all enough for your help

Garry