ITP was accute, but then something else happened

hi there

last may or so i posted my son of then 3 years old had ITP, after a lot of dokter visits and a visit to a specialized hospital in September, the itp mysteriously disappeared.

After 6 months of misery and sadness, we could breath again. 'it was just a case of bad luck'.

but then an even worse thing happened...

the 8th of January, i felt like my son was getting heavy, he looked bloated. the next morning we putt him on a scale en saw he gained 5 kilos in 3 weeks. this was not ok.

We got ni the car right away and drove to the E.R. They immediately took blood, blood pressure and a urine sample. after a few hours we got the diagnosis: Nephritis Syndrome. Yet again a rare auto immune problem.... Because of the itp 6 months earlier dokters took it very seriously, 3 days later he had a kidney biopsy. hoping to find 'minimal change nephritis' , the best version, the version that would heal and go away.

but last friday, after 4 weeks waiting, 4 weeks of prednisone, lasix, medication to lower blood pressure, we got the answer . not Minimal change. a genetic disorder. They took 9 tubes of blood, this is send to 7 hospitals in other countries, to find out the type of genetic disorder. after that they can pinpoint what IV he should need.

at first every 2 weeks, after a while every month or 2 months for the rest of his life. having a flue , a cold, ... it's gonna trigger it every time. his blood was hurt, now his kidneys are damaged, what's next???

our world is shattered. a genetic disorder, a lot of questions, where does it come from? me , his father? what if anyone else in the family has it? his little sister?

for me as a mother, i feel like i've failed my 4 year old son. My mind says i could not have know but my mother heart is bleeding.

anyways, because the itp is gone, this was my second and last post here.

i don't expect anyone to read this, it just felt good to write it all down

5 Replies

  • the genetic disorder causes his immune system to fail, and so ITP and Nephritis are directly caused by this

  • Don't worry Dear.Being a mother I can understand your feelings.Keep praying the ALMIGHTY.I will pray for you.My son is having ITP since two and a half years.He is 7 years now. Everything will be alright.

  • I am so sorry to hear this. My daughter was lucky and only had ITP for a few months but I remember the pain of seeing her suffer and wishing I could swap places with her.

    You must not think you have failed him. life is cruel, no child should go through these things. As long as you give him love and when let him live as normal life as the illness allows.

    take care xx

  • As a parent it is hard to see your child suffering. If you have done everything you can for him then there is nothing else you could do. It is really hard to see him suffering. There can be no blame for a genetic disorder. Just give him lots of love and support. My heart goes out to you. Nicky

  • Dear Kim - I always say - if you want a healthy life, you need to choose the right parents! Since we didn't have that choice, we inherited genes that we don't want. My grandmother and my Dad had guess who has it now and has had it for close to 4 years? I have told my kids over and over again - get tested! Since they are so healthy now and feeling great, they refuse. I was too -- until one day, my world changed. The ITP and Raynaud's seem to be worsening. It appears Lupus is progressive. Not that testing will change anything for them - but perhaps in their lifetime there will be a preventative vaccine. A cure? I'm not holding my breath for that! We can only do what we can do. You can't go thru life blaming yourself. It's not your fault that your son is sick.

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