Re: PMG Mum in London

[Guest guest]

Hi Olivia

 

You should always hold on to hope, because your son will always have potential

when he has a supportive mum who is there to fight his corner and help him

achieve. I know its really easy to want  to compare, but no one knows the

future. I think keeping those seizures under control is really important for

development and there will be times of progression and possibly times of

regression if the seizures are a problem.

 

We live in West Sussex and our neuro is Penny Fallon at St s, she is very

good.

My daughter is now 3 1/2 with generalised bilateral PMG too, seizures have

always been a problem for her and she is quite profoundly effected by her

condition. Good luck.

 

Louise, mum to Scarlett

Subject: PMG Mum in London

To: polymicrogyria

Date: Thursday, 21 April, 2011, 22:24

 

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

[Guest guest]

ALWAYS consider this, regardless of diagnosis, Harry is your son.  You LOVE him

and he LOVES you!  He, just as any of us, is who he is.  With love and support

he will develop and prosper in life to his fullest potential, whatever that

is.  You as his parent, is his voice, so speak up, advocate to the fullest

possibility, just as you would for anyone else in need,  and don't let anyone

ever place their limits on him!  MUCH LOVE, through the Creator of all Good and

Precious gifts,  Grandma to 2 very special little girls, Madie and Dakota : )

 

Subject: PMG Mum in London

To: polymicrogyria

Date: Thursday, 21 April, 2011, 22:24

 

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

[Guest guest]

Hi Olivia-

I will also say the same thing, Always BELIEVE IN YOU Harry. We got the

diagnosis for my son when he was approximately 6 months old. In a few months he

will be 6 years old.

(my son) seemed to be progressing as any child would, then he started

having seizures. We were able to get them under control within a few months,

but did notice some regression in areas. He was also “floppy†at times,

didn’t reach for things, but was certainly the happiest child I’d ever seen.

He is my 5th child, the only boy, so you can imagine he is spoiled beyond

belief!

Anyways, after going to a few doctors, and getting the same diagnosis and not

getting a very good feeling about his future (according to doctors, we should be

prepared to expect that he wouldn’t become much). Obviously we were

devastated, and had we followed their direction, would NOT be where he is

today. He has worked really hard, and although he has some issues (nonverbal,

cerebral palsy like body) he is in general education classes, and is very

intelligent. The last testing that was done was when he was 4 ½ and he tested

out in his receptive language area at the 7 yr. old . He completely understands

everything that is spoken to him, he just cannot speak. He does say about 30

words that the family can understand. But when he has his AAC device, he can

speak his mind with some assistance. Don’t get me wrong, we have many

challenges but I would not change the way is for the world…he is happy,

and clearly loves his life.

As I have always said when describing my son, he is very intelligent – he is

just stuck in a body that does not work for him. I would suggest to NOT give up

hope. To get your son into therapies (PT/OT/Speech) as much as you can. I

don’t know what is available in your part of the world, but we have been going

since was 8 months old. I strongly recommend you look into it and work

on things at home too. Feeding issues with , he is able to eat pureed

foods and from a bottle, but because of the paralysis/weakness in his mouth he

is unable to chew any solids. While he seemed to be fine in this area when he

was a little guy, the feeding issues came up when he got older. We opted not to

get him a feeding tube as suggested because so far we have been able to keep up

with his appetite and he is high percentile for his age/height/weight (he is

48†tall and about 50 lbs.).

Hug Harry and let him know you are happy to be his mommy, and are proud of him

regardless of the goals he meets or does not meet.

If you happen to have any questions along the line, you can always feel free to

contact me directly or if you’d like to read about ’s life

We have a blog that we keep updated for family and friends

www.danielspranger.com

Regards-

From: polymicrogyria [mailto:polymicrogyria ] On

Behalf Of teri ashley

Sent: Sunday, April 24, 2011 3:18 AM

To: polymicrogyria

Subject: Re: PMG Mum in London

ALWAYS consider this, regardless of diagnosis, Harry is your son. You LOVE him

and he LOVES you! He, just as any of us, is who he is. With love and support

he will develop and prosper in life to his fullest potential, whatever that is.

You as his parent, is his voice, so speak up, advocate to the fullest

possibility, just as you would for anyone else in need, and don't let anyone

ever place their limits on him! MUCH LOVE, through the Creator of all Good and

Precious gifts, Grandma to 2 very special little girls, Madie and Dakota : )

From: oliviajane1978 <oliviajane1978@...

<mailto:oliviajane1978%40yahoo.co.uk> >

Subject: PMG Mum in London

To: polymicrogyria <mailto:polymicrogyria%40yahoogroups.com>

Date: Thursday, 21 April, 2011, 22:24

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

[Guest guest]

Hi Olivia

Its great you've found the group.

I live in Leeds with my daughter Jenna. She's 7 months old and was diagnosed

just before xmas. She has right sided PMG, cortical sight loss, early CP (low

muscle tone) and severe seizures (20/day). My advice is be prepared to be the

most organised mum! You have so much to process at the moment just stick with it

and you'll get there - I promise. Everyone on here will always agree that our

children are bloody amazing. Jenna is such a happy baby and she works so hard.

I've realised that we're all different (I have a hippy mum, heart transplant dad

and heart disease myself). Everyone manages this situation in their own way. I'm

on my own, I work two days a week (wish I didn't have to be hey), I ask for help

and take it when its offered (which I used to hate) and I try mu hardest for

Jenna. You will both find your feet and thrive to your potential as a family.

Not sure what you have in place or even if this helps but here's a few thing

I've worked out about the NHS;

Firstly get a community paediatrician - they co-ordinate everything here - OT,

PT, physio, speech, education etc)

Contact your local authority education dept about portage - the community pead

should refer but it takes time and you can do it yourself too

Consider private physio if you think its needed and there's a long NHS waiting

list. We start in June with NHS (that first on the list!!) So I found an

excellent physio. V expensive 120 per hour but comes every 5 weeks and gives me

things to do. I works!!!

Try a v shaped pillow to lay on - this helped Jenna with her neck muscle tone

Try baby massage or yoga - NHS is free or local childrens centres should do it

Get to know the consultant secratery (sorry can't spell), they are the key to

clinic appointments

Referral letter take time to be typed and sent - sometimes they don't get there

(all of our went missing! Worked it out by phoning the depts myself)

You've prob done/know some of this already and there's prob a lot I've

missed/dont know yet so sorry if its full on.

Hope this helps :-)

Here anything, Katy :-)

>

> From: oliviajane1978 <oliviajane1978@... <mailto:oliviajane1978%40yahoo.co.uk>

>

> Subject: PMG Mum in London

> To: polymicrogyria <mailto:polymicrogyria%40yahoogroups.com>

> Date: Thursday, 21 April, 2011, 22:24

>

>

>

> 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

>

>