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NKH Progression

Because NKH is so rare, we’re not yet sure of the natural progression of the disorder. There is a study in progress, but in the meantime we’ve collected anecdotal accounts from NKH parents.

If you have any questions, please please please talk to your metabolic consultant.

First Year


– Persistant Hiccups

Post Birth

– Hypertonic
– Sleepy
– No reflexes (no gag, no suck)
– May wake up with or without medication.

Newborn Honeymoon

– May proceed as if typical. It’s a delightful time, so enjoy it.

Two month immunisations

– Be wary of getting these, or getting too many at once. Any kind of illness can cause seizures, and often immunisations can cause fever and a few days illness. There is no harm pushing out the immunisation schedule until your child is older and a bit more stable.
– As always, we’re not doctors, so please discuss with your consultant.

Three month curse

– Typically a spate of seizures, requiring extreme rescue meds. Possibly a stint in hospital, with lots of sleeping. May cause loss of skills gained in the honeymoon.