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