Is it usual for platelet count to fluctuate so much? How likely is it that my 5 year old daughter's ITP is acute?

[Jojw]

My daughter, then aged 4, was diagnosed with ITP in May. She had alot of bruising on her legs and arms and had a platelet count of 3. She had a few nosebleeds the following week but has had no other bleeds. She has since had regular blood tests but no treatment. Her count didn't start rising until August and has peaked at 70 in October. Her count today was 12. She is being referred to Birmingham Children's Hospital for a bone marrow biopsy as it is now over 6 months since she was diagnosed.

[sailor]

The Consultant at Birmingham should be able to answer all your questions. However, fluctuation does occur in some patients and not others so do not be alarmed. It is also possible for young children to go into remission for no apparant reason. The only thing I could say is hang in there and see what happens providing she is not bleeding, do not worry and await the outcome of the bone marrow biopsy

Do keep us posted, I think we are all interested in history of patients.

[Jojw in reply to sailor]

Just to let you know my daugher had the bone marrow aspiration at BCH in January and her count then was 13. Everything went smoothly and the staff there were lovely. The results were consistent with ITP. As she was bruising quite badly around this time I asked school to ensure that she stayed with the playtime supervisor at playtimes. Then at the beginning of February the petechiae disappeared and her bruising faded. Her eyes began to look less glassy and so I informed school that I was happy for her to start playing with her friends again. She had a blood test on Monday and her count was 81 - the highest since being diagnosed last May.

[AnthonyHeard Administrator ITP Support Association]

Hello Jojw

I would echo what sailor has said in that especially with young children they quite often go into remission without having to receive any medication or treatment. Infact with young children I know that all the ITP specialists I have talked to at my hospital (Royal Berkshire) suggest that they tend to avoid issuing any treatment or medication for as long as is safely possible for the simple reason that young children often see quite regular swings in platelet levels and that their immune system often settles down and cures itself so to speak. They call this a "watch and wait" policy and you may hear them mention it when they discus your daughters case.

I was diagnosed at the ripe old age of 46 and I was really knocked for six by it, so I can imagine that you must be going through a lot of worry but the best advice I can give you is....

1) Do talk to the specialist and ask plenty of questions, 2) Do look out for tell tale symptoms with your daughter. Bruising and bleeding would usually be likely if the platelet count drops below 15, albeit it can occur at higher numbers so just watch her. 3) Fatigue, tetchiness and tiredness is another sign that her platelet leveles may be low. This is not always recognised as symptom by doctors/specialists but it is very much recognised by ITP sufferers of all ages.4) Try to stay positive. I know this is easier said than done BUT I am convinced that it actually helps 5) Things that your daughter should NOT eat or drink..... Avoid anything with QUININE in it... ie bitter lemon drinks, tonic water and quite a few fizzy drinks have it so read the labels. Also avoid Echinacea and also anything with Aspirin in it including Ibuprofen, Cold Remedies that contain Aspirin like Lem Sip etc.

Anyway, I hope that some of this helps but please do have a look at the ITP Support Association website as it has some brilliant general info on ITP and a section on Childhood ITP.... see itpsupport.org.uk

Also the Platelet Disorder Association which is the American equivalent of the ITP Support Association has a useful website too .. pdsa.org

Best wishes and do keep in touch

Anthony

[Jojw]

Thank you for your replies. I have done alot of reading on the internet since my daughter was diagnosed and frequently refer to the ITSSupport and PDSA websites. I suppose it's the not knowing whether this is something that she will have to live with for the rest of her life that I find difficult. I know it could be alot worse in terms of her symptoms and other conditions that she could have but it still makes me feel anxious for her.

The food and drink advice is interesting as I have a nutrition degree and this was the first angle that I tried to research. She has a varied diet, mostly homemade and unprocessed, and has never had fizzy drinks.

I have been advised that she is likely to have her bone marrow biopsy in the middle of January.

[Navy]

Hi Jojw,

My 4 yr old son has been daignosed with itp as well and we are quite confused with sudden fluctuations and alternate therapies proposed by people. Since its has been 2 years now since ur child was daignosed with itp, pl let me know, what therapy did u finally go ahead with or it was just a wait and watch policy as suggested to u in the comments. Awaiting ur reply.

Thanks

[Jojw in reply to Navy]

Hi Navy, we continued with wait and watch. She had the bone marrow biopsy in January 2012 and the results were consistent with ITP. Following the bone marrow biopsy her platelet count began to rise. In March 2012 it was 81 then 132 in July 2012 and 209 in January 2013. The hospital then discharged her as an outpatient and she hasn't had bad bruising since. So it was 14 months from diagnosis until her platelet count was within normal range. I found it a very confusing and frightening time and kept reading lots on the internet which I think worried me even more. I'm glad now that we did wait and watch as the regular blood tests were quite trying enough for my daughter to begin with. When she started school in September 2011 the school were very good and put my mind at ease as I gave them the recommendations provided by the ITP Support Association. I hope that this helps and that your Consultant helps you to decide on the best course of action for your son.

[Navy in reply to Jojw]

Hi Jojw,

Thanks for the response. Hope the wait and watch policy can be prescribed for my son's ITP problem as well. Although we are on steroids right now and the doctors are suggesting removal of spleen if this does not come under control, which I am not in favour of. Hence, if its not much of trouble can you pl share your and your doctors contact details on my mail id [e-mail] as I would want a second opinion from experienced people and compare the platelet drop patterns before taking such a step. Really appreciate the effort. Thanks.