3yr old son day 4 of ITP diagnosis pl... - ITP Support Assoc...

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3yr old son day 4 of ITP diagnosis platelets 3 woken with widespread petechiae/bruise on hand & wrist... Do I contact hospital???

Beffalump5 profile image
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Beffalump5
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kered profile image
kered

Hi, The answer to your question is yes. Do not go through the NHS out of hours service hut go to the A and E or phone up the hospital haematology department directly.A platelet count of 3 needs to be increased quickly. Many of us with ITP have been that low so I can assure you there is no need to panic or be scared. From my own experience do not go through a triage nurse over the phone. Kered

Beffalump5 profile image
Beffalump5

Thank you x

sailor profile image
sailor

Hi Beffalump5. Interesting psuedo name although I get the 5.

I would mostly agree with Kered at this point in time. The haematology dept would be the best route but you may have to go thropugh the A&E dept to get there. This will give you some peace of mind if nothing else. This will be alarming for you all, but I think it only sensible with him being so recently diagnosed. Do ensure your consultant is really conversant with ITP and do not be pushed into treatment without research. The support group can provide a list of 'specialist' children haematologists in certain parts of the country with specialist knowledge in ITP.

Where abouts do you live and which is your hospital?

Whilst the count is important, it is not the B all and end all. Certainly at this level it needs a close watch. The count may well revert on its own without medication. As with all ITP sufferers, one medication will work on one and not the other so I would be reluctant unless he is bleeding. The rash will come and go and the bruising may well be the result of a simple bump in the night. I know from my own experiences, bruises appear and I do not remember banging into anything.

Keep us posted.

Beffalump5 profile image
Beffalump5 in reply to sailor

The nick-name is from my husband... Beff (slang for Beth & the 'alump' for every pregnancy bump)...I'm in south east Wales, my hospital is Nevill Hall, Abergavenny... Fin's got open access to the Paeds ward... I'm finding it extremely difficult to keep him from climbing, jumping & playing with his brothers & sister. Although the new petechiae/bruise appeared after sleeping :(

AnthonyHeard profile image
AnthonyHeardAdministratorITP Support Association

As has been mentioned already beff you should take your son to AnE. They will take a blood test to check his patelet levels but if he is bruising the level will certainly be under 20. If it is as low as 3 they may wish to give him some treatment like steroids to pull the level up BUT in many cases with young children many doctors/specialists do tend to NOT issue any treatment at least initially. The doctor will take into account if he has had any bleeding (nose, gums, in the bathroom), how much bruising he has had and the severity of those bruises and of course any other medical isssues if any your son may have had. Also do tell them of any other illnesses and medication he may have had at any time if any, as it could impact on any potential treatment they give him.

As you may have read, in many young children they often find that ITP goes away as suddenly as it came on in the first place and this happens quite quickly in many cases. Each case is different and each specialist is different in the approach they take so be aware of that. In the UK ITP is quite rare so you may find that many doctors/hospitals only see ITP quite infrequently SO if you feel that you want a second opinion from a recognised ITP Centre of Excellence then you can get a referal from your GP or the doctor who is treating your son. The list of the Centres of Excellence is available here...... itpsupport.org.uk/itpforum/...

Anyway, hope all this helps and good luck. Let us know how it all goes and don`t forget to ask if you need any further info .

iccle profile image
iccle in reply to AnthonyHeard

Hi Anthony, I was just interested in what u were saying here, about having a choice for a second opinion, I have a 5 year old with chronic Itp, I live in n Ireland and I asked my heamologist in Belfast, could I get a referral for a Itp centre of excellence, I have been refused, I was told because the treatment is available here, they felt I didn't need one, can u put me in the right direction, totally distressed about this decision.

AnthonyHeard profile image
AnthonyHeardAdministratorITP Support Association in reply to iccle

You can get a referral to a Specialist Centre for ITP if you want one. Whether or not your current hospital believes that the treatment is available with them, if you are wanting a second opinion then you are entitled to one. You can be referred by your GP or your existing specialist. If you have any problems getting a referral do email ITP Support Association HQ on info@itpsupport.org.uk and they will advise

kered profile image
kered

Hi Beffalump5

Although I now live in Scotland, I was brought up in Monmouthshire and looked up The Royal Gwent Hospital and found out that they have a busy Haematology Department. I agree with what others have said and hopefully his ITP will go away quickly . There is a lot to be taken at the beginning about a blood condition that you never knew existed ,but read as much as you can about it because the average GP has no detailed knowledge of ITP,and the same is true for Dentists and other health professionals. But childhood ITP often acute and scary can in ( over 70 percent I read) go away as quickly as it appears and never returns. Good luck,

LisaJJ profile image
LisaJJ

Hi, I live in Cardiff and my son was diagnosed when he was 2, he is 18 now, ask for a referral to Dr Connor at the Children's Hospital in Wales UHW, he is superb and an ITP specialist - best of luck - Lisa xx

Beffalump5 profile image
Beffalump5

Thank you everyone... My husband thinks I'm over-reacting so we didn't contact the hospital. Finley is fine in himself but is getting tired easily. We are playing it by ear at the moment & have bought him a rugby scrum cap 2 protect his head. I may phone the hospital tomorrow for some more advice :\

sailor profile image
sailor

Hi Beffalump5, What a lovely part of the country you live in. Know it well and the heads of the valley.

However, good to read your son is OK. Just keep an eye on him. Tiredness is not uncommon but if the ITP persist, he will learn to cope with it.

If or when he goes to a play group/kindergarten or even friends, make sure they are aware of his condition and he could bruise badly. You do not want anyone pointing fingers at you which does happen. As Anthonly said, there are pamphlets and info available to download on the ITP Support web site.

One of the American advisers siad ITP was far harder on the parents than the child. This is quite right.

Apart from this, you have been given a lot of common sense advice by everyone. Keep positive.

Children are different from adults in that they more often won't treat even at the lowest counts. So no need to panic unless there's real bleeding.