RE: PMG Mum in London

April 26, 2011

Hi Olivia,

We are currently based in Belgium, but we started our journey with PMG in

Bromley, SE London. Which consultants have you seen? There are a few of us

from the London area, and I am sure you'll get some other replies.

Our son Finlay (9) was seen by the geneticist and neurologist from Guy's

hospital. We also saw Prof Neville in Great Ormond Street Hospital.

The best advice we can give you is to get as much Physiotherapy and Speech

and Language therapy in as you can at a very early age. The more he learns

to do when he is very young, the better. We found conductive education

worked quite well. Also, if there is a Portage service where you are based,

try and get into it. The people running the Portage service in Bromley were

a great source of support and advice. They may not specifically know PMG,

but they tend to have a lot of experience with varying degrees of CP.

Finlay is a very happy child who enjoys life. He is communicating quite

clearly despite his lack of verbal communication. He is learning to manage a

computer and will hopefully get into using a communication system that will

speak for him.

Unfortunately, our Finlay is growing very quick and as he grows taller, his

muscle control is getting worse. Finlay is non-verbal and wheelchair bound.

We have invested in a range of different chairs for him to sit in, so when

he comes home from school, we can move him into a different sitting

position. His standing frame is at school.

We have very little experience with seizures. Finlay has continuous

epileptic activity, but no clear seizures. We only medicate at night with

Frisium.

Last summer we went to Seattle and saw Dr Dobyns. He was pleasantly

surprised by Finlay's progress and understanding as he had seen only the MRI

before.

Do not get distraught by the worst case scenarios you will hear from the

doctors. Listen, understand that they are portraying possibilities, but

remember the brain is flexible and your child can overcome some of the

hurdles.

Good luck.

Annelies

Mum to Gregor (12), Finlay (9, BPP & microcephaly) and Rowan (5)

[Norton AntiSpam] PMG Mum in London

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

April 26, 2011

I agree my daughter's MRI and EEG has not set limits on her achievements. Her

MRI has large holes and her EEG is way too busy. She is developing so well. In

the IEP meeting the teacher said this is a truely success of early intervention.

Nisha has left hemi CP and language delay And complex partial seizures. We do

tons of therapy by professionals and home and different ideas. Don't be fearful

one day at a time. I read the brain that changes itself and it helped me.

Diane