I will try not to drip feed but it may be a long post 🙈
DD 11, was born with significant birth defects raging effecting mainly lungs / heart and bowel.
she was required ventilating at birth and then crashed so required oscillator and full nitric oxide.
she still to this day has complex medical needs but I suppose you wouldn’t notice just by meeting her and requires a lot of hospital treatment.
we know our hospital and it’s staff very well.
2 years ago she caught a severe infection/ sepsis, the overall care was a bit hit and miss and it was a very tough time. On recovery DD was left unable to walk but they discharged us with a piece of paper of places to rent a wheelchair from. At this point I wasn’t even sure how I was managing to get her home or up the stairs. Gradually she started walking but her foot was “ stuck “ she could not place the foot flat on the floor and it was painful to her hip “ no matter what we did it just did not budge. We took her to the hospital and a doctor who we know quite well had said she saw DD put her foot down and DD sweat she didn’t, so we were dismissed.
nee finally managed to battle and her seen by ortho but the dr who had seen her before had already told them that it was “ psychological “
before we had got the ortho appointment I had had her seen at a private hospital by a ortho doctor who was also a consultant at a big nhs hospital. She told me straight away that is wasn’t being put on or psychological and that her leg was so tight that it caused basically her to lose range of her foot, she had written to the other hospital to tell them she would start with serial casting to release the leg or if it didn’t work surgery.
when we got to the nhs ortho appointment they decided based on what the paed had said originally that it was psychological, and Instead of doing serial casting, they gave her a leg cast for 48 hours to make her feel like her foot was fixed. This obviously did not work. We then requested the GP to refer her to the ortho we had seen at the private hospital hit via the NHS.
By the time we got there it was much worse than when she had first seen it and
er went through 10-12 weeks of over the knee casting to get the foot back on the floor. By this point she has been left wheelchair bound most of the time for a year with no intervention or finding out why.
we were extremely lucky that she responded well to treatment however it is starting again and our last ortho appointment they said although she is still flat it’s very close to reoccurring and that surgery would be the best option when it does.
she had also been having issues with shoulder / arm on the same side where it was sort of stuck upwards.
she had lost ability to participate in school pe and co- ordination in sports which OT was referring to paeds for assesment for dyspraxia . I got the last letter through recently from the latest ortho appointkent who said that they were aware that a dyspraxia test was being organised but that in their option she presents as a right sided hemiplegia.
I’m so angry at how my DD was made to feel and how after the severe infection no one took notice that something was right and instead blamed it on “ psychological reasons “ or Implied she was faking it.
this whole process has now taken 2 years would it be too late to put an official complaint in ( I don’t mean me sue ) but something to highlight the emotional and physical stress she went through by not being believed.