Been working on this post for a bit. Many people asking exactly what is wrong with Nisarga, so putting it together the best I can.
- He was fine till he was 3-4 months old. Had just begun turning to side, catching toys, etc when he kind of just… regressed.
- Low body tone – hypotonia. Just used to lie on his back, not moving.
- Started developing flattening of head, slightly curved posture (scoliosis?)
- Turned to side again at 6 months. Turned over at 7 months.
- Used to bang toys a lot (broke one musical keyboard like that). Used to raise himself on hands. Stopped raising himself on hands.
- No sitting, no crawling.
- His pediatrician used to tell us all was fine and some kids were late till he got one year old and she suddenly asked us why we hadn’t been more proactive. Obviously she didn’t remember what she had said. Changed pediatricians, pursued more doctors.
- N started physio. Did for 6 months. No milestone achieved. Stopped. He didn’t like it, and it wasn’t helping.
- Got MRI done. Clean. Nothing noteworthy.
- Met neurologist who prescribed Syndopa, which was a disaster, asked for some expensive tests (karyotyping and metabolic something), which I wasn’t so sure about, but am planning to get done now.
- Meanwhile, he seems to be developing tactile aversions. Doesn’t raise himself on hands anymore, doesn’t hold objects anymore, or touch hands together.
- Still not sitting, crawling. Forget standing, walking.
- Not talking
- Refuses to use hands for things like waving bye (he can, he has sometimes)
My own observations and stuff (that has so far been not picked up by docs as significant):
- He seems to be developing scoliosis, which further makes it difficult for him to balance himself.
- Some spasticity
- Scissoring (phase, decreased now)
- Does not arch back properly, making crawling, sitting, everything inefficient
That is pretty much it. I can provide specific info if needed.
- Born 3 weeks early.
- APGAR 9/10 after 5 min 10/10
- Birth weight 2350g
- Labor – Induced, long, uncomplicated
- Jaundice when young. No specific medication or treatment, took into sunlight. Resolved in days.
- MRI done. Normal.
- Currently stopped all treatment for a month on advice of family doctor.
I have done some Feldenkrais work with him, to which he responded well, but stopped as it didn’t do well with physiotherapy. Pretty much the only thing he has responded to so far.
Doctors so far: Pediatrician, family doctor, pediatric specialist (don’t know difference from pediatrician), pediatric neurologist, pediatric physiotherapist.
Consulting and advice from assorted doctors. Nothing surprising from current track.