Hello new member my daughter 7yrs old was diagnosed in early June with itp

a full blood test was done and it was here pallets that were low since then they have been going from 4,12,26,11,23,12 we have just seen the specialist in Manchester and he says for the next appointment in September that we will check again and if her level is 30 or above then wont go trough with a bone marrow test, shes never had any bleeds thank god and her bruising is now very mild compared to what they were at the start and no medication has been prescribed yet, Becuase it has only been 4 months is it right to go trough a bone marrow test and very scared if they find something else .

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  • i wouldnt worry to much the specialist will go thow everything with you before they do it my 8 .year old has itp it was acute at first but now he is ,down by his specialist as having now chronic but he hasnt had a bone marrow done yet but they .do put the child to sleep bfore they do it x my son been low 1 one two weeks ago he had to have a platelet tranfuision as he had blood in his wee they dont tend to treat a child with meds. for itp they only treat my son if he needs it . but my son specialist .is very good at explanieing things. to me hope every thing gose well and good luck hope she gets better soon x

  • Hello viperex and firstly a warm welcome to the group. I am sorry to hear that your daughter has been having such a difficult time and I can well imagine that it is very worrying for you and your family. In many children ITP can clear up as suddenly as it appears in the first place.Your specialist may already have told you that this is why they often take the option not to provide any treatment. If you are being attended to by Dr John Grainger in Manchester he is one of the leading experts in childhood ITP so you are in good hands. If you are not being treated by Dr Grainger I would certainly recommend that you have a consultation with him.

    In terms of the bone marrow test, I had one in July 2010 at the ripe old age of 50 and it is a painful experience, albeit I did not have it under sedation which I wish I had. They take the bone marrow test just to make sure that platelets are actually being produced as of course they are produced in the bone marrow along with our white and red blood cells. So the test is done really just to make sure that the issue is ITP. Sadly ITP is not a condition which can be diagnosed by one specific test. The blood tests we have show up a lack of platelets if we have ITP but do not indicate where the platelet shortage comes from. The blood test does not for example show whether we are producing insufficient numbers of platelets or whether we are producing enough platelets but they are being destroyed in our system . The bone marrow test will confirm whther or not platelets are being produced. If they are being destroyed a further issue is finding out where they are being destroyed as it could either be in the liver or spleen.

    In your daughters case as in many children you could well find that her system quickly and quite suddenly returns to normal and corrects itself. A platelet count of 30 and above is deemed to be safe and my specialist confirms that he would not issue any treatment until the count fell to under 20, albeit all specialists tend to take different views and much depends on the job, age, lifestyle of the patient and of course any other medical conditions they have. When the count is under 20 that is when you would in most cases expect to see some bruising, gum or nose bleeds or possibly blood in the urine or stools. The trouble with ITP is that we are all different and in my case for example my platelets were at just 4 when I was diagnosed but I have never had any bleeding just bruises.

    All I can say is that the symptoms to look out for are tiredness/fatigue/irritability, the obvious bruising and of course any bleeding from the nose, gums or in the bathroom. The platelet level may also fall if you get a cold,virus, infection so do be aware of this if your daughter picks up any such thing. The best thing is to try to be as normal as possible with her, albeit avoid allowing her to get involved in anything which may cause a blow/bump especially to the head. It is difficult with children as they want to be active but just exercise a bit of common sense.

    Hope all this helps but do have a look at the ITP Support Association website at itpsupport.org.uk as it has lots of very helpful information and a dedicated section on Childhood ITP. You may also wish to join our Facebook Group if you have done so already on....http://www.facebook.com/#!/pages/ITP-Support-Association/195007237228999

    Anyway, very best wishes and do come back to us if you need further info. Do keep us advised how you get on.

  • Hi Viperex. Sorry to read about your daughter. I assume, being in the Manchester area, you will be under Dr John Grainger, one of the best consultants in the UK for youngsters and who is based at the childrens hospital.

    Firstly, Itp in the young can go as quickly as it came.

    Secondly, I am sure no bone marrow test will be undertaken unless considered necassary. I am sure you will have been told that platelets are produced in the bone marrow and a test is often undertaken to determine if this is happening correctly. Many sufferes have gone through this procedure so do not worry it is quiet normal even through it must cause anxiety.

    Thirdly, do not feel you are alone. There are many who will be available to help either through this medium or through the ITP Support Group which incidently, I recommend you to join. This will give you access to an enormous amount of information and assistance and is FREE to join.

    Fouthly, ask questions of your consultant and if you do not understand the answer or want clarification on anything, do not be frightenend to ask again and again until you obtain an answer that you understand.

    Lastly, keep in touch and let us know how she develops and keep positive. Whilst ITP is a condition you could do without, it can be lived with. I have a count around 10 and have done so for 20 years. I have a normal life style but obviously mindful of the dangers which is easier for me than it would be for a 7 year old. One of the American specialists in ITP said the condition is far worse for the parents than for the child and I am sure that is right. I live not that far away from you and if you would like to chat send me a message.

  • Great advice from Sailor, hope it all helps viperex but do keep in touch.

  • Thanks for the reply's guys, i appreciate your help guys will keep in touch and see next month when we go back in too see Dr John Grainger and hopefully her level is 30 above. I look at her everyday and think if it was not for the mild bruising she gets now and then she is absolutely normal thank god and does what normal kids do but always keeping an eye on her.

  • Question about bruising is it common that they come and go into means at the the beginning she would get red/ purple looking ones and after for quite a while she's been getting mild colour bruising for quite a long time and now these past few a days the red/purple ugly looking ones have come back first time I've seen them in over 3months.

  • Hi Viperex, my daughter was diagnosed Feb last yr and turned 5 yrs old last month. My daughters count was under 10 all of last yr s by Oct our consultant suggested a Bone Marrow Test to make sure nothing else was going on and to make sure they could safely give her a short course of steroids. We went in for a day procedure which she coped with really well, she didnt seem to have any pain and the results were promising. We gave her a course of 4 days( 16 tablets dissolved in water each morning, I think it was) No side effects, so we all crossed our fingers. Like your daughter she hadnt had any significant bleeding problems but the platelet counts had been concerning. The day she had the bone marrow aspirate taken her p count was 9, it rose to 17. Not what we were expected and the count went down again. Therefore we continued with the watch and wait treatment. In December her count suddenly rose by its self, still less than 20, but we were excited. It continued to rise slowly over the next 4 months to 118. We were so relieved. However, in June the test showed her count had dropped to 7. Dissappointed does not begin to describe our emotions. I would have no doubt that the medical professionals will guide us as best they can. I read somewhere that the small red spots (petechiae!?) are as sign that their count is less tha 10. From my experience of ITP over the last 18 months i'd say its pretty acurate. Sometime my daughter has just a few (4-5) significant black/blue bruises and sometimes they are spread everywhere but not so severe. It is a confusing condition. We have started giving my daughter multi vitamins (consultant ok'd) just to give her some extra protection as the autumn/winter draws in. Hope any of my waffling helps! :-)

  • tnx mesh very helpful hope your daughter gets well and my daughter has an appointment this week see what happens

  • hi guys went in this week and her levels were 24 so we had the bone marrow test it went well and quick we have an appointment in 2 weeks and pray to god for good result.by the way is it natural for my child who is in 4 months in this condition without medication to have a bm test is that normal procedure?

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