Re: Arianne Blackley just joined the group

[Guest guest]

So nice to have you with us...my daughter is almost 14 months old with PMG. She

takes Tegretol to control her focal seizures and was just found out to have

reflux.....we had many problems with her sleeping and screaming at night and

realize that it was because of the reflux coming up...she never showed any other

symptoms of it so you might want to have your Arianne checked for it too. We are

sure glad we did...she has been doing much better while taking Zantac. Jenna's

development has progressed greatly since taking Tegretol...she can crawl, pull

herself up to stand and walk around furniture...she has recently started to get

brave and take a few steps. She cannot feed herself or see small things...she

has vision problems...she wears glasses and has a patch for her right eye...she

is making lots of talking noises..mama...dada...gaga....things like that, she

will start OT and PT very soon...her fine motor skills are most lacking. Anyway,

I really wanted to suggest you get a test for your daughter on

reflux....hopefully it will rule out that problem and maybe it is just her

teething. Good luck!

~, , Alina, & Jenna ( 1 year with PMG )

Arianne Blackley just joined the group

We are very happy and excited to have just joined the group, and

wanted to introduce ourselves to you. We have twin girls aged 6,

and Natasha, who are normal children, although you might not

think so sometimes. We also have Arianne, our third daughter, aged

18 months, who has Polymicrogyria.

Arianne was born on Valentine's Day 2002. She has quite serious

development delays. She is an IVF baby born through a planned C

section, but had no trauma that we know of either during pregnancy,

at birth, or in her development. It was only at 5 months that we

began to notice her lack of development. After many tests, MRI,

ultrasound, lumbar puncture and 9 blood tests at St s and

Kings College hospitals in London, she was diagnosed with

Polymicrogyria in her left frontal lobe, but none of the blood tests

have shown any genetic abnormalities. We are doing physiotherapy,

portage, cranial osteopathy, occupational therapy and now detailed

nutritional tests with a nutritional specialist, as she has very bad

eczema and has also had problems with her liver, where she has

gallstones.

At 14 months, she could stay sitting quite happily, and at 15 months

started commando crawling with her elbows. At 16 months, she has

started to push herself up from lying to sitting. However, her body

is quite floppy, and her fine motor skills are poor. She has a

squint in one eye, although the eye tests show both eyes are quite

strong. She leans her head back to try and focus.

She has no understanding of words, and has not enunciated any vowel

sounds yet. She can play games, like peek a boo, and sometimes

passes a ball or brick back to you when you hold out your hand.

She keeps making small progress, and is generally very happy (which

together with her small head is why she was originally diagnosed

with Angelman's Syndrome). However, she very rarely gets through the

night without waking up and screaming, we think mainly because of

teething, which seems to have been going on for the last 14 months.

Her teeth are slowly coming through.

We want to try and provide the stimulation to help her develop to

wherever she can get to. In June, we took her for two days to BIBIC

(British Institute for Brain Injured Children), where they spent the

first day assessing her, and the second day providing a programme of

exercises for us to do with her each day. This was an great

experience, and she got so much stimulation on the first day that

she slept non stop for 13 hours that night. They concentrate on the

sensory skills, and have given us exercises to get her to stop

sticking her tongue out so much, as this is limiting front of mouth

constenant sounds, hot/cold and rough/smooth stimulations, and

exercises to try and stimulate cross-pattern co-ordination of her

arms and legs, amongst others. They then encourage you to return,

where they assess progress and refine the exercise and stimulation

programme. We would recommend BIBIC highly, which is an offshoot of

a similar place in the US.

However, we have been given no idea by the NHS what the end product

could be, and whether she will be able to walk and talk. We would

love to hear of other exercises that have been recommended to your

child to help them develop and maximise their potential.

With love

Neil & Fiona

PS You can see a photo of Arianne on the website

[Guest guest]

Neil & Fiona

Welcome to our group and thank you for the intro to Arianne. She sounds

gorgeous, like all the kids here.

I would agree with who suggested that you investigate the possibilty of

reflux causing the night time troubles. Our Hannah had silent refllux, so there

was nothing to see but certainly plenty of reaction to hear. It can be very

painful and distressing, even if they are not actually throwing up.

The stimulation sounds fantastic, and its grea to hear that you have her in such

a wonderful program. As for predicting Arianne's future, it is a difficult thing

to do, and most doctors shy away from giving a prognosis. As time goes by you

will learn more and more of her capabilities, you will become an expert on your

daughter, and be able to make more informed decisons about her treatment and her

future.

Looking forward to hearing more.

- Melbourne, Australia; mum to angel Hannah with PMG (26Jan'97 -

30Oct'02), Ben 11yrs, & 14 yrs

[Guest guest]

Thanks and Gavin for your suggestions about looking at reflux -

there are no visible signs, so we hadn¡Çt thought about it.

Jenna sounds like she is developing very well. We have also put a patch

on one eye for Arianne, followed by glasses, but she has figured out how

to take them off and suck them pretty quickly. Out of interest, was

Jenna diagnosed with PMG in one frontal lobe or both?

Neil & Fiona, , Natasha & Arianne

Re: Arianne Blackley just joined the group

So nice to have you with us...my daughter is almost 14 months old with

PMG. She takes Tegretol to control her focal seizures and was just found

out to have reflux.....we had many problems with her sleeping and

screaming at night and realize that it was because of the reflux coming

up...she never showed any other symptoms of it so you might want to have

your Arianne checked for it too. We are sure glad we did...she has been

doing much better while taking Zantac. Jenna's development has

progressed greatly since taking Tegretol...she can crawl, pull herself

up to stand and walk around furniture...she has recently started to get

brave and take a few steps. She cannot feed herself or see small

things...she has vision problems...she wears glasses and has a patch for

her right eye...she is making lots of talking

noises..mama...dada...gaga....things like that, she will start OT and PT

very soon...her fine motor skills are most lacking. Anyway, I really

wanted to suggest you get a test for your daughter on

reflux....hopefully it will rule out that problem and maybe it is just

her teething. Good luck!

~, , Alina, & Jenna ( 1 year with PMG )

Arianne Blackley just joined the group

We are very happy and excited to have just joined the group, and

wanted to introduce ourselves to you. We have twin girls aged 6,

and Natasha, who are normal children, although you might not

think so sometimes. We also have Arianne, our third daughter, aged

18 months, who has Polymicrogyria.

Arianne was born on Valentine's Day 2002. She has quite serious

development delays. She is an IVF baby born through a planned C

section, but had no trauma that we know of either during pregnancy,

at birth, or in her development. It was only at 5 months that we

began to notice her lack of development. After many tests, MRI,

ultrasound, lumbar puncture and 9 blood tests at St s and

Kings College hospitals in London, she was diagnosed with

Polymicrogyria in her left frontal lobe, but none of the blood tests

have shown any genetic abnormalities. We are doing physiotherapy,

portage, cranial osteopathy, occupational therapy and now detailed

nutritional tests with a nutritional specialist, as she has very bad

eczema and has also had problems with her liver, where she has

gallstones.

At 14 months, she could stay sitting quite happily, and at 15 months

started commando crawling with her elbows. At 16 months, she has

started to push herself up from lying to sitting. However, her body

is quite floppy, and her fine motor skills are poor. She has a

squint in one eye, although the eye tests show both eyes are quite

strong. She leans her head back to try and focus.

She has no understanding of words, and has not enunciated any vowel

sounds yet. She can play games, like peek a boo, and sometimes

passes a ball or brick back to you when you hold out your hand.

She keeps making small progress, and is generally very happy (which

together with her small head is why she was originally diagnosed

with Angelman's Syndrome). However, she very rarely gets through the

night without waking up and screaming, we think mainly because of

teething, which seems to have been going on for the last 14 months.

Her teeth are slowly coming through.

We want to try and provide the stimulation to help her develop to

wherever she can get to. In June, we took her for two days to BIBIC

(British Institute for Brain Injured Children), where they spent the

first day assessing her, and the second day providing a programme of

exercises for us to do with her each day. This was an great

experience, and she got so much stimulation on the first day that

she slept non stop for 13 hours that night. They concentrate on the

sensory skills, and have given us exercises to get her to stop

sticking her tongue out so much, as this is limiting front of mouth

constenant sounds, hot/cold and rough/smooth stimulations, and

exercises to try and stimulate cross-pattern co-ordination of her

arms and legs, amongst others. They then encourage you to return,

where they assess progress and refine the exercise and stimulation

programme. We would recommend BIBIC highly, which is an offshoot of

a similar place in the US.

However, we have been given no idea by the NHS what the end product

could be, and whether she will be able to walk and talk. We would

love to hear of other exercises that have been recommended to your

child to help them develop and maximise their potential.

With love

Neil & Fiona

PS You can see a photo of Arianne on the website

[Guest guest]

Actually...they said that 3/4 of Jenna's brain is affected with PMG. That the

worst of it was in the Perisylvian area. She also will not keep the patch of

glasses on her face and we have resorted to these things called " arm bands " that

keep her arms straight so she cannot get the patch or glasses off. The only

problem is that I cannot keep them on her ALL day because it will not be good

for her development!!! AS SOON as I take the bands off...she is ripping off the

patch and taking off her glasses. My hubby and feel stuck! Damned if we do and

damned if we don't, kind of thing. Hopefully Arianne will have better luck with

her glasses and patch.

~, , Alina, & Jenna ( 1 year with PMG )

Arianne Blackley just joined the group

We are very happy and excited to have just joined the group, and

wanted to introduce ourselves to you. We have twin girls aged 6,

and Natasha, who are normal children, although you might not

think so sometimes. We also have Arianne, our third daughter, aged

18 months, who has Polymicrogyria.

Arianne was born on Valentine's Day 2002. She has quite serious

development delays. She is an IVF baby born through a planned C

section, but had no trauma that we know of either during pregnancy,

at birth, or in her development. It was only at 5 months that we

began to notice her lack of development. After many tests, MRI,

ultrasound, lumbar puncture and 9 blood tests at St s and

Kings College hospitals in London, she was diagnosed with

Polymicrogyria in her left frontal lobe, but none of the blood tests

have shown any genetic abnormalities. We are doing physiotherapy,

portage, cranial osteopathy, occupational therapy and now detailed

nutritional tests with a nutritional specialist, as she has very bad

eczema and has also had problems with her liver, where she has

gallstones.

At 14 months, she could stay sitting quite happily, and at 15 months

started commando crawling with her elbows. At 16 months, she has

started to push herself up from lying to sitting. However, her body

is quite floppy, and her fine motor skills are poor. She has a

squint in one eye, although the eye tests show both eyes are quite

strong. She leans her head back to try and focus.

She has no understanding of words, and has not enunciated any vowel

sounds yet. She can play games, like peek a boo, and sometimes

passes a ball or brick back to you when you hold out your hand.

She keeps making small progress, and is generally very happy (which

together with her small head is why she was originally diagnosed

with Angelman's Syndrome). However, she very rarely gets through the

night without waking up and screaming, we think mainly because of

teething, which seems to have been going on for the last 14 months.

Her teeth are slowly coming through.

We want to try and provide the stimulation to help her develop to

wherever she can get to. In June, we took her for two days to BIBIC

(British Institute for Brain Injured Children), where they spent the

first day assessing her, and the second day providing a programme of

exercises for us to do with her each day. This was an great

experience, and she got so much stimulation on the first day that

she slept non stop for 13 hours that night. They concentrate on the

sensory skills, and have given us exercises to get her to stop

sticking her tongue out so much, as this is limiting front of mouth

constenant sounds, hot/cold and rough/smooth stimulations, and

exercises to try and stimulate cross-pattern co-ordination of her

arms and legs, amongst others. They then encourage you to return,

where they assess progress and refine the exercise and stimulation

programme. We would recommend BIBIC highly, which is an offshoot of

a similar place in the US.

However, we have been given no idea by the NHS what the end product

could be, and whether she will be able to walk and talk. We would

love to hear of other exercises that have been recommended to your

child to help them develop and maximise their potential.

With love

Neil & Fiona

PS You can see a photo of Arianne on the website