terrible feeling

goodmorning, i'm from belgium.

my son Senne is almost 4 years old and was diagnosed with (doctors say acute) ITP last may. he is having a really hard time with it. tired, moodswings, lots and lots of bruising... 2 weeks ago, his platelets started rising and finally all is bruising was gone. but yesterday after is first day of school he was completely covered head to toe. (literally). In belgium there are no supports groups, almost nobody heard of it, even some of the nursing staff and dokters in hospital never heard of it.

As a mother i feel so helpless to see him suffer and there is really nothing i can do.

people don't seem to understand and some of them tell me that i ( and my husband) exaggerate. we are being silly.

but i can't help it, i'm exhausted, sad, and nobody seems to understand. i've tried to explain everything to them and what ITP is but it's not that simple.

12 Replies

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  • If you go onto the ITP support web page I'm sure there's information sheets for schools and about childhood ITP. The main thing with ITP in children is that most times - not always- ITP rights itself - no idea why - so fingers crossed. But it seems like your job is not only to worry about your child but to educate others around you. Good luck

  • morning Kimmeke, you will get lots of support here. ITP is an awful condition and many children grow out of it. It is a roller coaster of emotion. You will not stop worrying about him, it only shows how much you care. I have had ITP for many years and at one point was attending hospital three or four times a week for over a year. It can totally take over your life. Others on this site will help you with ideas as to what you can do. I will just send you lots of good wishes and please know that you are not on your own. We do understand. Nicky

  • Goodmorning,

    i just came back from his weekly check up. we're being forwarded to a Professor to see if there aren't any other options, but it wil take 6 to 9 months to get an appointment. incluiding the first symptoms ( when we just thought he bruised easily) he's going on 7 months now. so he told me that he probably isn't acute but chronic. september 1st school started again, but with his fallback now he is so tired and moody that school is nog an option. and this is very sad because he absolutely loves to go.

  • Being tired is a side effect that all ITP'ers have experienced but the medical fraternity do not recognise it. Have you looked at the ITP website? There is a lot of information there for you to read. In the UK we have hospitals that have many ITP patients. I asked to be referred to St Barts in London where I saw Dr Drew Provan and within hours he put me on a different medication that changed my life. Are you able to get a referral to see him? Just a thought.

  • we don't have the financial possibility to travel to other countries for Dr appointments.

    i've read i think every brochure and website that i can find out here

  • pdsa.org get your doctors and school to go here and get informed. There is no reason he cant go to school if even for half a day if he is really tired best to try and keep him in as normal a routine as possible. As said above there are some great info sheets on precautions for schools to take and its important to have a medical plan created to cover everybody. My son was diagnosed at 4 and has been at school this year with 2 bleeding episodes and treatment during the past 2 years. I have had itp for 17 years and it is also important to remember that the way children are managed is very different to adults so seek out a peadiatric heamotologist bhs.be/about-bhs/hematology... bspho.be/ here are some links in your country that may gvi eyou some contact details.

  • yes but he is fysically just too tired if he is at a low. he does not function normally. he doesn't eat, he just lays there and cries.

    I've contacted the school this morning to have a meeting to talk about the situation because this is not how i want his life to be.

  • i see in the list that our hospital is mentionned, but this is the hospital that reffers us to another one.

  • Which hospital do you go to? UZ Leuven has been keeping an eye on me for years. The Belgians however, don't seem to worry until the count is about 15, and you are bruised all over.

    The Belgians do know about ITP, but they treat it differently to the Brits or the Americans. You need referring to haemotology.

  • i've been going to AZ Turnhout, i've been referred to a Professor Haemotology in Geel now.

    Yes they don't seem to worry one bit. it's actually frustrating. i live about 5 minutes from the dutch border. And even in Holland the treatment is completely different.

  • Please try to manage financial ability (may be from bank) to go to UK. Forget about his school, first try to bring him in his normal life. well you go to Holland hope he will be all right you should please keep all the generic name of the medicine.....

  • apparantly the Dr's we're being send to are The ITP specialists in Belgium voor ITP in kids.

    i completely misunderstood this morning because of my emotions ( thank god i always take one of the grandparents with me) and its in Leuven. so normally he will be in good hands there.

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