need help

[Guest guest]

Here is a web site that might help :

http://www.drugs.com

It can sometimes be very frustrating having sex on narcotics. It seems to take

a long time to get to the finish. It gets easier the longer you are on them

talk to your doc. about your problems he may want to keep an eye on your

prostate.

I'm so sorry to hear about your loss. I found that after my husband died I

have been in a lot more pain. It seems like when you have to deal with the pain

of losing someone so dear it amplifies the physical pain a great deal. I have

found that picking up a hobby or doing something to distract your mind helps a

little.

Here is another web site that has helped me deal with the loss of my husband

maybe it will help you to : http://www.groww.org/sitemap.htm

Well good luck and I hope this helps a little

---------------------------------

[Guest guest]

To the moderator,

Hi, I am happy to see a lot on good informations on this yahoo group. I

would like to unsubcribe my existing email and will create a new

dedicated email address just for his group. Please remove my account.

Thanks,Abet

[Guest guest]

You have to do it yourself.  At the end of every e-mail there is a link to unsubscribe.CherylTo the moderator,Hi, I am happy to see a lot on good informations on this yahoo group. I would like to unsubcribe my existing email and will create a new dedicated email address just for his group. Please remove my account.Thanks,Abet

[Guest guest]

>Mellisa

If you are taslking about Childrens in Boston, what department are

you looking for, Epilepsy or neurology? If Epilepsy, they are hard

to get in without going through neurology!

> My son has bpp and I have been a member of this group for

some time now ( haven't posted for a long time). had been seen

in Boston back in 2004 and now I'm trying to get him down there again

and I keep calling and trying to get Kira Apse but with no luck. Does

anyone have a number?  started having seizures around the time

he turned 5 which was in November 2007. We started him on meds in

April and we are getting no where with them (he's on 3 different ones

right now). I'm at my wits end and feel so helpless.  I had wanted

them under control before he started kindergarten this fall. So I'm

hoping Boston can shed some light on this.

> Thanks,

>

>

>

>

>

>

>

[Guest guest]

>Mellisa

Also in regards to the medications don't be discouraged yet! My son

was having up to 60 seizures in a day and we tried all of the ones

mentioned in the reply with no good results. We did finally find a

combination in January of 08 and until last week he has been seizure

free!!!!!! He has PMG and is on apam, Baclofen, Vigabatrin (from

Canada) and Phenobarbitol. I noticed in the relpies no one is on

Phenobarbitol. It is one of the oldest and proven seizure meds. we

foubnd out last week it is probably one of the factors that is

maintaining my son. His levels dropped from an antibiotic and hew

had 140 seizures last Sunday while in Childrens. Good lick and keep

tyring, I never thought we could get it under control but we did!

Joe

> My son has bpp and I have been a member of this group for

some time now ( haven't posted for a long time). had been seen

in Boston back in 2004 and now I'm trying to get him down there again

and I keep calling and trying to get Kira Apse but with no luck. Does

anyone have a number?  started having seizures around the time

he turned 5 which was in November 2007. We started him on meds in

April and we are getting no where with them (he's on 3 different ones

right now). I'm at my wits end and feel so helpless.  I had wanted

them under control before he started kindergarten this fall. So I'm

hoping Boston can shed some light on this.

> Thanks,

>

>

>

>

>

>

>

[Guest guest]

My daughter is followed by the Neonatal Neurology Dept  at Children's Boston by

Dr. Khwaja- he is wonderful. He has followed her since she was 3 weeks old.

She is now 2.5. Good Luck

 

Subject: Re: Need Help

To: polymicrogyria

Date: Monday, September 29, 2008, 7:17 AM

>Mellisa

If you are taslking about Childrens in Boston, what department are

you looking for, Epilepsy or neurology? If Epilepsy, they are hard

to get in without going through neurology!

> My son has bpp and I have been a member of this group for

some time now ( haven't posted for a long time). had been seen

in Boston back in 2004 and now I'm trying to get him down there again

and I keep calling and trying to get Kira Apse but with no luck. Does

anyone have a number?  started having seizures around the time

he turned 5 which was in November 2007. We started him on meds in

April and we are getting no where with them (he's on 3 different ones

right now). I'm at my wits end and feel so helpless.  I had wanted

them under control before he started kindergarten this fall. So I'm

hoping Boston can shed some light on this.

> Thanks,

>

>

>

>

>

>

>

[Guest guest]

Poduri, MD Specialty: Epilepsy

Boston

is new to Children's in Boston and is involved with the PMG research.

She specializes in epilepsy and you may be able to get in to see her

soon if you mention PMG when calling. She is also involved with the

Walsh lab and Barry whose contact information is below. Good

Luck!

Barry, MS, CGC

Walsh Lab

Genetic Counselor, Research Coordinator

**PLEASE NOTE NEW CONTACT DETAILS**

Phone:

Fax:

Email: bbarry@...

Lab Website: www.walshlab.org <outbind://91/www.walshlab.org>

General Postal Mailing Address

300 Longwood Avenue; Children's Hospital Boston, CLS 14047; Boston, MA

02115 USA

Re: Need Help

>Mellisa

If you are taslking about Childrens in Boston, what department

are

you looking for, Epilepsy or neurology? If Epilepsy, they are

hard

to get in without going through neurology!

> My son has bpp and I have been a member of this group

for

some time now ( haven't posted for a long time). had been

seen

in Boston back in 2004 and now I'm trying to get him down there

again

and I keep calling and trying to get Kira Apse but with no luck.

Does

anyone have a number? started having seizures around the

time

he turned 5 which was in November 2007. We started him on meds

in

April and we are getting no where with them (he's on 3 different

ones

right now). I'm at my wits end and feel so helpless. I had

wanted

them under control before he started kindergarten this fall. So

I'm

hoping Boston can shed some light on this.

> Thanks,

>

>

>

>

>

>

>

[Guest guest]

Dr. Podouri is my son doctor and she is wonderful!!!!!!!!!!!!!

Joe

> >Mellisa

> If you are taslking about Childrens in Boston, what department

> are

> you looking for, Epilepsy or neurology? If Epilepsy, they are

> hard

> to get in without going through neurology!

> > My son has bpp and I have been a member of this group

> for

> some time now ( haven't posted for a long time). had

been

> seen

> in Boston back in 2004 and now I'm trying to get him down

there

> again

> and I keep calling and trying to get Kira Apse but with no

luck.

> Does

> anyone have a number? started having seizures around

the

> time

> he turned 5 which was in November 2007. We started him on meds

> in

> April and we are getting no where with them (he's on 3

different

> ones

> right now). I'm at my wits end and feel so helpless. I had

> wanted

> them under control before he started kindergarten this fall.

So

> I'm

> hoping Boston can shed some light on this.

> > Thanks,

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Hey . My son is diagnosed with the same thing and my husband and family

were the SAME way. My husband is still like that. At first it was denial, now

(2yrs later) he is FINALLY starting to open up and talk about it. I know exactly

how you feel. I thought out of everyone, that my husband should have been there

emontionally and I felt lost and aggrivated because he wasn't. I don't know of

any support groups where you are. You should try a childrens hospital near you,

their website because there are usually links to different support groups and

even meetings for those specific groups. You'll be ok girl. I know its hard and

it drains you but it WILL get better. Appointments and therapies will slow down

and you and your child will get some breaks. You just gotta be strong and it

sounds like your doing a great job taking care of your baby. I'm not a church

person but I do believe in God and he never gives you to much you can't handle.

I think he gives us special needs children because he knows we are strong and he

knows that they will be well takin care of. I hate to hear your down in the

dumps and I don't even know you lol. I just know that I have been there and its

not a fun place to be. If you need ANYTHING, advice, to vent, or someone to cry

to, you can email me anytime. Day or night. I have a blackberry so my emails pop

through like a text message and I usually reply as soon as I get the message.

Just hang in there and be strong. Just think, it could be a lot worse. Your a

great mommy and that's all that matters. I hope this helped some. Take care.

Mommy to Micah

Sent on the Sprint® Now Network from my BlackBerry®

NEED HELP

Hello Everyone my name is Dunn. I have a 7 month old son named Sullivan

Dunn. He was diagnosied with Bilateral generalized polymicrogyria @ 12 weeks

old. I have really been struggling emotionally. I don't know how to come to

terms with it or even how to process it. My husband never wants to talk about

it and I can't talk to anyone in my family. I cry almost every night and I feel

like I need help. Does anyone know of any support groups in the St. Louis, MO

area? OR does anyone have any advice as to how I can deal with this? Please

let me know? Thank you,

[Guest guest]

Hi -

I do not know of any support groups, but if you need to talk you can email

me and I can attempt to help-

My son has Bilateral Perisylvian Polymicrogyria and covers approximately 80%

of his brain.

YOu an check out how well he is doing. Dont just go by the internet and

what the papers say there. Each child IS different!

Spranger

www.danielspranger.com

_____

From: polymicrogyria [mailto:polymicrogyria ]

On Behalf Of jessica.dunn79

Sent: Tuesday, September 29, 2009 5:29 PM

To: polymicrogyria

Subject: NEED HELP

Hello Everyone my name is Dunn. I have a 7 month old son named

Sullivan Dunn. He was diagnosied with Bilateral generalized polymicrogyria @

12 weeks old. I have really been struggling emotionally. I don't know how to

come to terms with it or even how to process it. My husband never wants to

talk about it and I can't talk to anyone in my family. I cry almost every

night and I feel like I need help. Does anyone know of any support groups in

the St. Louis, MO area? OR does anyone have any advice as to how I can deal

with this? Please let me know? Thank you,

[Guest guest]

Hi - my name is and I write from Brisbane Australia. My baby is

5 months old and has suspected PMG but needs another MRI down the track to

confirm this. He is already developmentally delayed (no oral feeding, seizures,

can't hold head up yet, hearing impairment, and has only just started smiling).

He has been aspirated adn been resusitated more times than I can remember now

(his seizures cause complete shutdown of his breathing systems).

When my husband and I found out at 3 weeks of age that Tom had a brain injury,

it was the most devastating thing we could imagine. We both fell apart and I

struggled to just get out of bed each day due to the anxiety I felt.

Through support of many people, lots of talking with each other, reading and

understanding, we are in a much better place than we were.

Some things I found very helpful were:

* the support of the wonderful people on this email group.

* counselling as a couple with the social worker from the hospital where Tommy

has spent a lot of time.

* getting contacts through the hospital of other parents who have been through a

similar journey to us - I called these people and they have become friends to us

already.

* sourcing a counsellor for me to see when needed privately.

* getting local support and respite from a local support group for children with

disability (respite gives me a few hours to take my 2 year old son out to have

some time together).

* focussing energy on helping Tom achieve his milestones (rather than just

focussing on what he may never achieve (engaging therapy for Tom whether it is

through the government or privately).

* joining another support group which helps us raise money in the future for Tom

to get certain equipment he may need.

I googled your area and there seems to be quite a bit of support for childrenw

ith disability - link below:

http://www.yellowpagesforkids.com/help/mo.htm

As there doesn't seem to be as many children with PMG in Australia, I have found

some of the greatest supports are people with children with similar disability -

microchephely, cerebral palsy, etc. While the diagnosis is not the same, the

challenges our children face are often similar.

I am also trying not to focus on Tom's diagnosis so much, but on treating the

symptoms of his condition.

The bonding process with Tommy continues and is getting stronger. It is hard at

first (for some people) to bond with a baby who has something wrong. I found

reading about this and understanding that it was a " grieving process " my husband

and I are going through, was very important in moving through that process. And

accepting Tom's condition. And starting to forgive myself for the guilt I felt

for not " building " Tom right.

I understand exactly how you feel. But you need to ask for help. Accept help

from your friends if they offer to cook you a meal - you need this help and it

is the only way they can help you. People want to help you. Seek support in

the community and keep talking to each other.

Best wishes to you all.

- Brisbane Australia

Mum to Harry (2) and Tommy (5 months - suspected PMG)

x

>

> Hello Everyone my name is Dunn. I have a 7 month old son named

Sullivan Dunn. He was diagnosied with Bilateral generalized polymicrogyria @ 12

weeks old. I have really been struggling emotionally. I don't know how to come

to terms with it or even how to process it. My husband never wants to talk

about it and I can't talk to anyone in my family. I cry almost every night and

I feel like I need help. Does anyone know of any support groups in the St.

Louis, MO area? OR does anyone have any advice as to how I can deal with this?

Please let me know? Thank you,

>

[Guest guest]

Hello !!

 

We all probably felt the same way you do at one point or another.  That initial

diagnoses just punches you in the stomache.  My son, TJ, will be 2 in November. 

He has Perisylvian PMG.  I felt like anyone (family and friends) were (in their

attempts to be positive) were just brushing it off and not taking it seriously. 

" Oh he will be fine " or " you always here about the worst case senerio, dont

believe what you read "   but the truth was, I saw in him the things I was reading

and frankly, it freaked me out!!

 

My husband is NOT at all supportive.  I am battling this ALONE!!  He says he is

just slow and stop taking him for tests because they will just look for things

wrong.  Just let him be a little boy.  He would argue with me in front of

doctors and tell me I was rediculous for believing them and they are just out

for money and not about our son.  I was devistated, and at times, still am. 

 

Our dreams of having a baby came true and everything was wonderful it seemed. 

We found out he was a boy and automatically envisioned him in football,

baseball, wrestling....  We had all these plans for him.  Then we were forced to

wake up from that dream to the realization that my son very well may never play

ball! My husband can't or won't accept that we have a special needs child.  I

accept that he is the same beautiful boy now as he was before we got the

diagnosis.   I will love him the same.  Just my hopes for him had to change with

time.  I love him just as much now as I did then if not more. 

 

I found comfort in people who knew what I was talking about, here on yahoo and

the FACEBOOK groups!!  I didnt have to explain what PMG is and how each case

differs and what aspects pertain to my son.  This is a very rare condition and

not braodly known.  It is helpful in so many ways to touch base with people on

the page as you and struggling with similar circumstances.  I dont know off hand

of anyone in the MO area.  I am in Buffalo, NY.  Honestly, I dont think anyone

else in the area has PMG. 

 

Has your son's team (doctors) discussed getting in touch with Dr. Dobyns of

Chigaco?  I am currently in communication with his office.  He is the main

researcher for PMG, pediatric genetics and neurology.  Most of the PMG moms have

contact with him.

 

Also, there is a website for special needs kids and you can make one for

Sullivan if you wish- totally free.  I made one for TJ, as did a lot of the PMG

parents for their kids.   www.caringbridge.org  TJ's link is

www.caringbridge.org/visit/tjjoy if you care to read his story and see pics.  If

you have facebook, I will happily be your " friend " and you can contact me at any

time!!  There are a lot of moms there for PMG support.

 

Have you heard the " Holland story " ?  (In reference to special needs children) 

You and your husband packed your bags for Italy and planned to see the sites

there.  When you arrived and got off the plane, you were in Holland.  At first

you were frightened and confused.  But, your plans had to change.  Everything

you saw was different.  You came to the realization that different isnt a bad

thing.  The sights are just as beautiful and your journey was just as fun....

just different than you originally planned. 

 

One more thing, I used to fell pity for parents of special needs kids.  I no

longer feel bad for them.  The joy my little TJ fills me with is like no other. 

They are such precious gifts that God has entrusted us with the responsibity of.

 

Best wishes for you and your family.

With love and understanding,

Joy

(Mother of TJ Joy, almost 2, Perisylvian PMG)

 

NEED HELP

Hello Everyone my name is Dunn.  I have a 7 month old son named Sullivan

Dunn.  He was diagnosied with Bilateral generalized polymicrogyria @ 12 weeks

old.  I have really been struggling emotionally.  I don't know how to come to

terms with it or even how to process it.  My husband never wants to talk about

it and I can't talk to anyone in my family.  I cry almost every night and I feel

like I need help.  Does anyone know of any support groups in the St. Louis, MO

area?  OR does anyone have any advice as to how I can deal with this?  Please

let me know?  Thank you,

[Guest guest]

>

>

>

> Subject: NEED HELP

> To: polymicrogyria

> Date: Tuesday, September 29, 2009, 5:28 PM

>

>

>  

>

>

>

> Hello Everyone my name is Dunn. I have a 7 month old son named

Sullivan Dunn. He was diagnosied with Bilateral generalized polymicrogyria @ 12

weeks old. I have really been struggling emotionally. I don't know how to come

to terms with it or even how to process it. My husband never wants to talk about

it and I can't talk to anyone in my family. I cry almost every night and I feel

like I need help. Does anyone know of any support groups in the St. Louis, MO

area? OR does anyone have any advice as to how I can deal with this? Please let

me know? Thank you,

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Hi

I am the grandmother of the most beautiful little redhaired boy

who was diagnosed as deaf at 2 weeks. it was then due to MRI and CAT Scan

looking into Cochlear Implants that his diagnosis of PMG was found. He was not

using his right hand and doing little at 6 mths when this happened. he was

difficult to feed and did not sleep well to give a few other things.

I accompany my daughter to all major appointments with her to be the second pair

of ears to hear and be able to discuss things, and cry with her.

BJ her husband has still not comed to terms with Torin and he is now 3. He loves

him with a passion but is only now showed signs of being able to discuss the

problems. Some family members are great some not.

The Neuro told us to keep remembering that PMG is a discription of the shape of

the brain and not any way can indicate how well the baby will do. Torin is doing

well he has bilateral Cochlear implants and he is now walking and with therapy

hopefully one day will talk.

Please cry when things get too much, rant at us when there is no one who will

listen. I hope you have a shoulder to cry on and that with time your husband

will come to be able to talk.

Grandma CArol, Torin 3 Bilateral profuse PMG, Hemiplagia, deaf and a few other

things but the most cuddly little redhead to have curled up asleep in your arms.

-- In polymicrogyria , " jessica.dunn79 "

wrote:

>

> Hello Everyone my name is Dunn. I have a 7 month old son named

Sullivan Dunn. He was diagnosied with Bilateral generalized polymicrogyria @ 12

weeks old. I have really been struggling emotionally. I don't know how to come

to terms with it or even how to process it. My husband never wants to talk

about it and I can't talk to anyone in my family. I cry almost every night and

I feel like I need help. Does anyone know of any support groups in the St.

Louis, MO area? OR does anyone have any advice as to how I can deal with this?

Please let me know? Thank you,

>

[Guest guest]

NATASHA,

THIS IS JESSICA SULLIVAN'S MOM.  SORRY IT TOOK ME SO LONG TO CONTACT YOU.  I

LOST YOUR EMAIL BUT I FOUND IT NOW.  ANYWAY I WANT TO TAKE SULLIVAN TO A NEW

DOCTOR.  THE ONE I TAKE HIM TO NOW CAN'T SEEM TO KEEP HIS SEIZURES UNDER CONTROL

AND I AM STARTING TO GET REALLY SCARED.  CAN YOU PLEASE LET ME KNOW WHO YOU TAKE

ZACH TOO?  ALSO DOES ZACH HAVE SEIZURES?  WHAT MEDS IS HE ON?  ANY ADVICE? 

________________________________

To: polymicrogyria

Sent: Thu, October 1, 2009 7:22:26 AM

Subject: Re: NEED HELP

 

HI ,

My son zach is 5, he was diagnosed when he was a week old.Sometimes i forget

that there is something " wrong " with him. The only advice i have is its one day

at a time. I live in Springfield Il but all our care is in St louis. Cardinal

Glennon. We go down about 3 or 4 times a month to see all our drs. down there. I

havent found a support group down there but im going to ask my dr if she knows

of anything. Good Luck. If you ever need to talk or anything dont hesitate to

email me my private email is ttzsnow@consolidate d.net. I would be happy to meet

up with you and just sit down in talk on one of our trips to st louis. We

usually try to make a day of it go to the zoo and stuff but not till its warm

again to cold.

Good Luck

Natasha

>

> Hello Everyone my name is Dunn. I have a 7 month old son named

Sullivan Dunn. He was diagnosied with Bilateral generalized polymicrogyria @ 12

weeks old. I have really been struggling emotionally. I don't know how to come

to terms with it or even how to process it. My husband never wants to talk about

it and I can't talk to anyone in my family. I cry almost every night and I feel

like I need help. Does anyone know of any support groups in the St. Louis, MO

area? OR does anyone have any advice as to how I can deal with this? Please let

me know? Thank you,

>

__._,_..___

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