Advice for my 7 year old sons Itp Newley diagnosed

Hi I'm look for some advice around Itp and treatments, we have seen a consultant today regarding my sons Itp and he has discussed Some treatments that have some heavy side affects. My son already takes steroids for a auto immune disease called behcets but is now finally on a low dose of 5mg daily. We've been told today it's pointless increasing the steroid dose as he has managed to get Itp whilst already taking them. The doctor has talked about a bone marrow biopsy to investigate further and also mentioned removing his splene, along with a treatment that would involve giving my son anti bodies that can possible cause a virus that they can't prevent or treat that affects the brain? Has anyone heard of the risk with this and now the chance of it happening and if not has anyone had any of these treatments and how has it helped you? Many thanks in advance for you help with this as its all still new to us and we're looking to find out as much as we can before making a decision on his treatment.

11 Replies

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  • No point removing the spleen unless you know if the platelets are being destroyed in the spleen or the liver.

    What is your son's platelet count?

    Sometimes in kids it does reverse itself. Is the consultant an expert in ITP, as many don't know much about it.

    Places to go for info and advice are the ITP Support Association in UK, who have a website, and the PDSA website in the US (Platelet Disorders Support Association).

    Don't panic. Many of us have fairly low counts and no treatment at all. The steroids are often the first course of treatment anyway.

    There will hopefully be people along to give you more advice on this.

  • Thank you for your advice, the highest platelet count he's had is 11 and the lowest being 4, yes the consultant is an Itp specialist. It was our first appointment yesterday. He's on steroids for his auto immune disease the consultant has said he believes it's pointless increasing the steroid dose again as he seems to have got this whilst already taking the higher dose which we've managed to bring down over the past few months.

  • In the US the best information about pediatric itp is at pdsa.org — and in the UK go to itpsupport.org.uk

    In the States, the antibody treatment is still in phase III clinical trials but so far looks very promising. I would avoid the bone marrow biopsy if at all possible as it is painful for most people. Also, get plenty of more information before a splenectomy. He is very young and perhaps other treatments may help him. Best of luck to you and your son!

  • I also completely agree with these comments. Removal of spleen is not a solution as it has it's own complications and there is no surety that it will work.

    There are number of other treatments. Visit PDSA, have a look in the available options and discuss with doctors.

    Best of luck,

    Yogesh

  • hi my daughter is 6yrs old when she was diagnosed with itp.just last January.platelet is 36 and she has this very bad joint pains,unending cough&colds,pneumonia became ordinary then.Doctor suggested for steroids to increase platelet.But sory not sory we dint allow that for our daughter.instead we settled for a HOMEOPATHIC TREATMENT it was terible for the past 3wks but getting better for a couple of months.we started october platelet 36,with homeopathic meds and strict diet of no processed&preservative foods,white sugar was out then instead we used organic honey as sweetener,no dairy products as well.we do juicing 3xday like beetroots with pineaple,or apples with oranges.just to help bosts her platelet.By october slowly her platelet is going up,april we reached 150,and so on now we are 190.but with cough&colds it would go down to 100.

    Steroids&immuno suppressants are no help actually.they will.just have a lifetime side effects.I hope you will trt HOMEOPATHIC TREATMENT & a lot of prayers.and diet is all that matters.vegetables&fruits is realy a big help.

  • HELLO can you guide me how I can find this homeopathic medication.I want to use it for my 8 year old.is their any website or can u share the prescciption..............God bless u

  • I am aware of the side affects of steroids as I have also needed to be on them over the years but they are honestly fine for short courses as long as they're not used as a long term treatment. They have done my son the world of good for his auto immune disease but not for the Itp as he didn't get Itp through having illness it is just something else that's started going on with his body. The other treatments suggested by the consultant had worse long term side affects so it won't be a decision I will be taking lightly. But thank you very much for you advice regarding the Itp.

  • Im 55 was also diagnosed 2wks ago with itp, I'm on my second round of prednisone 80mgs daily. My platelets were 7 but pleased to say now 21, just 1 more wk of this round to go hoping his plan has worked and we reach his first goal of getting over 30!!!!

    Nice to see this being discussed as I'd never heard of it before, I've also been advised not to let them remove my spleen. Will definitely go look at the homeopathy page now sounds like very good advice, thank you.

  • Dear parent have u done bone marrow tests to see why the count is low. The test isnt very easy for kids.my 7 year old had it twice n the sample taken wasnt Good enough for bioosy .Godhelp u...

  • Hi, no we havent had the bone marrow test yet but that's the next step so hopefully we will get answers from this

  • Yes the marrow tests r helpful.I hope things r tolerable for ur child.it's just the beginning of a nightmare. ...

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