My son Mylo was born with a form of spina bifida called lipomyelonmeningocele, he is also on the spectrum.
For many years he only showed a few mild symptoms from the condition so had no surgery, but when he reached 9/10 he began to form scoliosis at the top of his spine and had recurring problems with his feet (loss of sensation and skin breakdown). The hospital along with myself decided it was time to try surgery. (September 2018)
It was a big long op, around 9 hours. All went ok, and as the days past he began mobilising very slowly.
We had been in hospital around a week when Mylo complained of a headache, which is not uncommon after this kind of surgery, He also began vomiting. It was all put down to the surgery. The next morning I noticed that Mylo was leaking fluid from his incision site. He was given a local anaesthetic and re stitched and were told he could go home in a couple hours but to keep an eye on his temperature. He was still vomiting and had headaches but he was happy to be home.
At around 4.30 We got him upstairs as he said he was very tired and left him to sleep for a bit checking on him. During this time I searched CFS leak on Google and found meningitis, I thought I was thinking the worst and Google always scares you with symptoms.