PMG Mum in London

[Guest guest]

Keen to hear from other parents, especially if you're in UK and London with a

child with PMG.

My son Harry is 5 months old and has PMG. The first MRI scan we had done (at 10

weeks) was a feed and wrap so the images are blurred by movement but the initial

report says he has bilateral and generalised PMG - which from my internet

reading seems to be the worst kind. Harry is having another MRI under general

anaesthetic in a few weeks time so they can be sure and to help with the genetic

testing.

Harry has secondary microcephaly (head tracks between 2nd and 9th centile whilst

he is in 98th centile for height!). I took Harry to see a paed at 10 weeks as i

was concerned about his small head and an exaggerated startle reflex. There

were no other obvious signs of anything being wrong and the GP at the 8 week

check had been happy. He appears to have good hearing and vision, has no

problems feeding or with breathing and is generally meeting most of his

milestones apart from a bit of a lag in his head control. I would say he is a

bit more placid at times than other babies his age (although he also goes

through periods of being a bit hyperactive) and doesn't seem as interested in

toys and grabbing at things yet. He has some mixed tone but it doesn't appear

too severe. I think his first big delay will probably be sitting as he tends to

curl forward when supported in a sitting position. Obviously, there is a big

question mark over his future mental and behavioural development too.

He started having seizures around 11weeks of age and it took a few visits to A & E

and trying different meds and different dosages to get the fits under control.

He is on sodium valproate, cholbozan and phenobarbitone for now and hasn't had a

fit for about 6-7 weeks which is a huge relief. Sometimes he stares into space

for a few seconds and I wonder if he's still there- not sure if this is a type

of seizure?

He is a gorgeous boy, smiling, " cooing " and " gahing " and keen to stand on my

lap. All in all, he's doing really well considering everything I have read

about bilateral PMG on the internet and the bleak picture painted by a few of

the consultants we have seen.

When we received the news it was obviously devastating but looking at everything

he is able to do, it seems hard to rationalise. Are there others out there with

similar experiences? Can I expect things to get worse as he gets older or

should we really hold on to hope?

Olivia, SW London