Re: Re: Hi, New to the group

[Guest guest]

Thanks. My son is 9 months old. I needed to hear the good stuff.Thank you,

Julissa Cutchen

Sent from my iPad

> I'm sure we all can remember those first days after diagnosis. I just always

try to remain positive and optimistic. It's great to have this group since so

many things you read are downright scary! Just some food for thought. My Emmalee

is 2 1/2 now. We were told she will never walk or talk. She doesn't walk....she

runs! And climbs and dances!!! So each child is different and while she doesn't

talk we have hope. Seizures are few. She has other medical issues as well and is

developmentally delayed but has made great strides in just the last 6 months.

Cognitively she is amazing! Your best next step is early intervention. Getting

started with therapy early is key to success. Feel free to contact me any time!!

. Day or night!

>

> ~Jodi

>

>

>

> > While I don't know your exact circumstances, I feel as if I can totally

> > understand. And everyday is different -- some are better than others. So

> > glad you're finding the joy in the midst of the trials. If it's any

> > constellation, the FB is " closed' and supposedly the posts are not visible

> > to anyone but group members. The intention is for it to be a safe place for

> > all members to share, learn and grow. Looking forward to seeing you there

> >

> >

> >

> > >

> > > I have tried to put all that sadness energy into positive plans to help

> > > Nisha achieve the most she can but that sad reality does come to surface

> > > sometimes less as she achieves more.Diane

> > >

> > > To: polymicrogyria

> > > From: hjlsanders@...

> > > Date: Tue, 10 Jan 2012 18:27:59 +0000

> > > Subject: Re: Hi, New to the group

> > >

> > >

> > >

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> > >

> > > Thanks! I'll definiately check out the FB group as well. It's nice to know

> > > there is support out there for something you don't hear about everyday. I

> > > haven't told most people, only immediate family. We needed time to process

> > > everything and weren't ready for all our friends and family to ask us

> > > questions. I could barely think about it without coming to tears. Now I

try

> > > to look at it differently. I have a beautiful happy child that brings us

so

> > > much joy!

> > >

> > >

> > >

> > >

> > >

> > > > > >

> > >

> > > > > > Hi, I just joined the group. I have an infant that was diagnosed

with

> > >

> > > > > polymicrogyria. We found out a few months ago so I've had some time to

> > >

> > > > > process and go through an emotional roller coaster. I was really happy

> > > to

> > >

> > > > > see this group and get connected with others going through the same

> > > thing.

> > >

> > > > > My baby is doing well so far. I guess the hardest part is the waiting

> > > game

> > >

> > > > > and the unknown.

> > >

> > > > > > I look forward to being involved and meeting others!

> > >

> > > > > >

> > >

> > > > > > Thanks!

> > >

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[Guest guest]

Hi my daughter has PMG and also has a small head we were told that her brain

stopped growing. She is now 2yrs and 8 months and has a head circumference of

45cm which hasn't changed in well over a year

Sent from my BlackBerry® smartphone on O2

Re: Hi, New to the group

The doctors have said that my granddaughters brain " stopped growing " . She has a

small head (compared to most 3 months old). Does anyone know if that is part of

the polymicogyria or a totally diffent diagnosis? She has been diagnosed with

polymicrogyria.

>

> Hi and welcome. I dont really use the yahoo groups a lot but I wanted to

> say welcome. I have a baby girl..almost 6months old she has PMG..we found

> out when she was about 3weeks. Its been an adventure with lots of ups and

> downs for sure but I think we all learn how to handle things the best we

> can. My daughter also is super happy most of the time so I think the helps!

> Its is nice to have other parents to talk to though!

>

>

>

[Guest guest]

My son has a small head size as well. It's technical name is Microcephaly and

it's a symptom of PMG.

polymicrogyria on Tuesday, January 10, 2012 at 11:31 AM -0800

wrote:

>Hi my daughter has PMG and also has a small head we were told that her brain

>stopped growing. She is now 2yrs and 8 months and has a head circumference of

>45cm which hasn't changed in well over a year

>

>Sent from my BlackBerry® smartphone on O2

>

>

>

> Re: Hi, New to the group

>

>

>

>The doctors have said that my granddaughters brain " stopped growing " . She has

>a small head (compared to most 3 months old). Does anyone know if that is

>part of the polymicogyria or a totally diffent diagnosis? She has been

>diagnosed with polymicrogyria.

>

>

>

>

>

>>

>

>> Hi and welcome. I dont really use the yahoo groups a lot but I wanted to

>

>> say welcome. I have a baby girl..almost 6months old she has PMG..we found

>

>> out when she was about 3weeks. Its been an adventure with lots of ups and

>

>> downs for sure but I think we all learn how to handle things the best we

>

>> can. My daughter also is super happy most of the time so I think the helps!

>

>> Its is nice to have other parents to talk to though!

>

>>

>

>>

>

>>

[Guest guest]

My son also has a small head. When he was about 1.5 years old to age 2 it

stopped growing and was considered microcephaly but then it grew another 2 cm

and still has a small head but I don't think he is considered microcephaly

anymore.

To: polymicrogyria

From: skrasyk@...

Date: Tue, 10 Jan 2012 19:49:44 +0000

Subject: Re: Hi, New to the group

Thanks, it is nice to know that it is a symptom of PMG. At two, is your

daughter meeting all her milestones, sitting up, crawling, walking talking?

> >

> >>

> >

> >> Hi and welcome. I dont really use the yahoo groups a lot but I wanted to

> >

> >> say welcome. I have a baby girl..almost 6months old she has PMG..we found

> >

> >> out when she was about 3weeks. Its been an adventure with lots of ups and

> >

> >> downs for sure but I think we all learn how to handle things the best we

> >

> >> can. My daughter also is super happy most of the time so I think the helps!

> >

> >> Its is nice to have other parents to talk to though!

> >

> >>

> >

> >>

> >

> >>

[Guest guest]

She is sitting up but not crawling or walking she is delayed by over 12months in

most areas she has no words yet but has started to babble a lot this last month

she is also the most adorable pleasant child and we love her to bits xxx

Sent from my BlackBerry® smartphone on O2

Re: Hi, New to the group

Thanks, it is nice to know that it is a symptom of PMG. At two, is your

daughter meeting all her milestones, sitting up, crawling, walking talking?

> >

> >>

> >

> >> Hi and welcome. I dont really use the yahoo groups a lot but I wanted to

> >

> >> say welcome. I have a baby girl..almost 6months old she has PMG..we found

> >

> >> out when she was about 3weeks. Its been an adventure with lots of ups and

> >

> >> downs for sure but I think we all learn how to handle things the best we

> >

> >> can. My daughter also is super happy most of the time so I think the helps!

> >

> >> Its is nice to have other parents to talk to though!

> >

> >>

> >

> >>

> >

> >>

[Guest guest]

Yes she is on Keppra and Epilim atm we had tried Tegretol as well but it failed.

I hope 2012 is a great year for all our wee babies and I hope that your wee girl

continues to do well.

Sent from my BlackBerry® smartphone on O2

Re: Hi, New to the group

Thanks, it is nice to know that it is a symptom of PMG.  At two, is your

daughter meeting all her milestones, sitting up, crawling, walking talking?

> >

> >>

> >

> >> Hi  and welcome. I dont really use the yahoo groups a lot but I wanted to

> >

> >> say welcome. I have a baby girl..almost 6months old she has PMG..we found

> >

> >> out when she was about 3weeks. Its been an adventure with lots of ups and

> >

> >> downs for sure but I think we all learn how to handle things the best we

> >

> >> can. My daughter also is super happy most of the time so I think the helps!

> >

> >>   Its is nice to have other parents to talk to though!

> >

> >>

> >

> >>

> >

> >>

[Guest guest]

Kat

She had brain surgery.

Sent from my iPhone

>

>

> I'm so pleased she is doing well. What got the seizures under control? Is she

on medication for them.?

>

> Good luck for 2012, I hope it brings you lots of happy times.

>

> Kat

>

> ________________________________

>

> To: polymicrogyria

> Sent: Thursday, 12 January 2012 1:36 AM

> Subject: Re: Re: Hi, New to the group

>

> Yes she does they started at 10months and were hard to get under control at

first she had been 17months seizure free just before xmas when she had a few

prolonged seizures which ended up being a kidney infection but she's back toi

her old self again over the xmas period she has started to pull herself up

really well in her cot using the one hand and has started to say mama not

directly at me but its progress and were over the moon hopefully 2012 will bring

loads more of achievements for us all to celebrate

>

> Sent from my BlackBerry® smartphone on O2

>

> Re: Hi, New to the group

>

> Thanks, it is nice to know that it is a symptom of PMG. At two, is your

daughter meeting all her milestones, sitting up, crawling, walking talking?

>

>

> > >

> > >>

> > >

> > >> Hi and welcome. I dont really use the yahoo groups a lot but I wanted to

> > >

> > >> say welcome. I have a baby girl..almost 6months old she has PMG..we found

> > >

> > >> out when she was about 3weeks. Its been an adventure with lots of ups and

> > >

> > >> downs for sure but I think we all learn how to handle things the best we

> > >

> > >> can. My daughter also is super happy most of the time so I think the

helps!

> > >

> > >> Its is nice to have other parents to talk to though!

> > >

> > >>

> > >

> > >>

> > >

> > >>

[Guest guest]

The problem is I can't find anyone who want to help out. I've posted in the

local college asked around and no one.

Where did you find someone? Did you use a service?

To: polymicrogyria

From: divewithmelissa@...

Date: Wed, 11 Jan 2012 14:49:38 -0500

Subject: Re: Re: Hi, New to the group

I think California (used to be) is like Washington. As in they provide

secondary (or primary if needed) for all disabled children (there are

standards). We got diapers, hot tub (no therapy pool in 100 miles) and respite

care (saved my sanity!!!). A social worker came to our house every couple of

months (which sucked, but hey).

Sent from my iPhone

> Thanks for the info. We have insurance although will look into a suuplement

becasue with all the different dr appointments we go to, everything adds up

quickly! We were told we wouldnt qualify for certain things based on our income

but want to try the medical waiver, where our income isnt considered and its

based on our child's condition. I'll look into DDS too. I knwo it varies state

to state - we're in CA.

>

>

> >

> > > > >

> >

> > > > >

> >

> > > > >

> >

> > > > >>

> >

> > > > >

> >

> > > > >> Getting started in the Early Start program is a great thing. Keep

your ears out for other resources as much as you can. See if you can get a case

manager. If not already, try to get on Medicaid. We weren't for the first 13

months of Maureen's life, and there were months where our Med bills were more

than our house payment, and that was with private insurance through my husband's

job. Once you get Medicaid, things become a lot easier. Many of the big Medical

Supply Companies are more used to dealing with them.

> >

> > > > >

> >

> > > > >>

> >

> > > > >

> >

> > > > >> We also have home health nursing, which is a godsend, allowing me to

get out of the house to run errands, or occasionally have a date night with my

husband.

> >

> > > > >

> >

> > > > >>

> >

> > > > >

> >

> > > > >> Our Maureen seems to be a lot more impaired than average for PMG.

She's almost 3, and is about the development of a 4 month old. She isn't sitting

by herself, and certainly no walking or talking. She's pretty severely visually

impaired as well. Her seizures have been under control for almost a year with

the ketogenic diet, which we've been very thankful for. She has the PMG, as well

as hypoplasia of the corpus collosum, and ventriculomegaly. The ventricles

appear to be getting progressively bigger as well, but thank goodness, it

doesn't seem to be due to fluid pressure.

> >

> > > > >

> >

> > > > >>

> >

> > > > >

> >

> > > > >> Someone asked a while back about genetics. A lot of people confuse

genetic with hereditary. Something can be genetic, but not be hereditary. It was

still caused by something wrong in the genes, but it's just a fluke, and won't

be passed on. (An easy example of this is Down syndrome.) There are a few known

genes that have been linked to PMG, but you can test negative for those genes

and still have PMG.

> >

> > > > >

> >

> > > > >>

> >

> > > > >

> >

> > > > >> Everyone's advice is right though, right now, nobody seems to think

it's hereditary.

> >

> > > > >

> >

> > > > >>

> >

> > > > >

> >

> > > > >>

> >

> > > > >

> >

> > > > >>

> >

> > > > >

> >

> > > > >>

[Guest guest]

The state had trained providers for respite. They were contracted, trained and

paid directly.

Child are since I moved from there has been an ongoing challenge.

Sent from my iPhone

>

>

> The problem is I can't find anyone who want to help out. I've posted in the

local college asked around and no one.

>

> Where did you find someone? Did you use a service?

> To: polymicrogyria

> From: divewithmelissa@...

> Date: Wed, 11 Jan 2012 14:49:38 -0500

> Subject: Re: Re: Hi, New to the group

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> I think California (used to be) is like Washington. As in they provide

secondary (or primary if needed) for all disabled children (there are

standards). We got diapers, hot tub (no therapy pool in 100 miles) and respite

care (saved my sanity!!!). A social worker came to our house every couple of

months (which sucked, but hey).

>

>

>

> Sent from my iPhone

>

>

>

>

>

>

>

>> Thanks for the info. We have insurance although will look into a suuplement

becasue with all the different dr appointments we go to, everything adds up

quickly! We were told we wouldnt qualify for certain things based on our income

but want to try the medical waiver, where our income isnt considered and its

based on our child's condition. I'll look into DDS too. I knwo it varies state

to state - we're in CA.

>

>>

>

>>

>

>>>

>

>>>>>>

>

>>>

>

>>>>>>

>

>>>

>

>>>>>>

>

>>>

>

>>>>>>>

>

>>>

>

>>>>>>

>

>>>

>

>>>>>>> Getting started in the Early Start program is a great thing. Keep your

ears out for other resources as much as you can. See if you can get a case

manager. If not already, try to get on Medicaid. We weren't for the first 13

months of Maureen's life, and there were months where our Med bills were more

than our house payment, and that was with private insurance through my husband's

job. Once you get Medicaid, things become a lot easier. Many of the big Medical

Supply Companies are more used to dealing with them.

>

>>>

>

>>>>>>

>

>>>

>

>>>>>>>

>

>>>

>

>>>>>>

>

>>>

>

>>>>>>> We also have home health nursing, which is a godsend, allowing me to get

out of the house to run errands, or occasionally have a date night with my

husband.

>

>>>

>

>>>>>>

>

>>>

>

>>>>>>>

>

>>>

>

>>>>>>

>

>>>

>

>>>>>>> Our Maureen seems to be a lot more impaired than average for PMG. She's

almost 3, and is about the development of a 4 month old. She isn't sitting by

herself, and certainly no walking or talking. She's pretty severely visually

impaired as well. Her seizures have been under control for almost a year with

the ketogenic diet, which we've been very thankful for. She has the PMG, as well

as hypoplasia of the corpus collosum, and ventriculomegaly. The ventricles

appear to be getting progressively bigger as well, but thank goodness, it

doesn't seem to be due to fluid pressure.

>

>>>

>

>>>>>>

>

>>>

>

>>>>>>>

>

>>>

>

>>>>>>

>

>>>

>

>>>>>>> Someone asked a while back about genetics. A lot of people confuse

genetic with hereditary. Something can be genetic, but not be hereditary. It was

still caused by something wrong in the genes, but it's just a fluke, and won't

be passed on. (An easy example of this is Down syndrome.) There are a few known

genes that have been linked to PMG, but you can test negative for those genes

and still have PMG.

>

>>>

>

>>>>>>

>

>>>

>

>>>>>>>

>

>>>

>

>>>>>>

>

>>>

>

>>>>>>> Everyone's advice is right though, right now, nobody seems to think it's

hereditary.

>

>>>

>

>>>>>>

>

>>>

>

>>>>>>>

>

>>>

>

>>>>>>

>

>>>

>

>>>>>>>

>

>>>

>

>>>>>>

>

>>>

>

>>>>>>>

>

>>>

>

>>>>>>

>

>>>

>

>>>>>>>