Re: New Member

Report post · September 24, 2002

> My grand-nephew, Daire, aged 3 months, has just been diagnosed and

we are

> all still in shock.

,

Welcome to the loop. You will get a lot of information and support

here. In addition, you'll get a sense of the wide range of severity

that is seen in PMG. My son is quite highly involved. He is

affected primarily in the parietal and occipital lobes. He is 2 1/2

but can not sit, roll, grasp objects, or speak. He does communicate

with an eye gaze board and switch devices. He has a g-tube for

feedings, and only recently had surgery to reduce his severe reflux

(vomiting). He is a little unusual for a PMG kid in that he does not

have seizures (yet, and God willing he will be spared that aspect).

is a delightful, sweet, loving little boy, and a great

pleasure to have in the family, though he does require a great deal

of work.

Tell us more about Daire--how did he come to be diagnosed? Were

there indications of problems before birth? How is he doing at this

point?

I think it is wonderful that you are wishing to support his parents.

This is a really tough time for them, and they will need all the love

and support you can give them. Many of us look back at the first

year of dealing with our children's diagnosis as the equivalent of

dealing with a death. In a way we have to grieve for the loss of

the " healthy " baby we wanted and expected before we can fully love

and accept the reality of the baby we have. The emotional

rollercoaster is gruelling. In our case, we were helped by a family

counselor associated with the Early Intervention Center where our son

gets therapies. Having someone to talk freely with is so important

for the parents. Also, the early days are often full of endless

doctor visits and tests and chaos of getting into the system. I

would have loved having family available to help me through the

paperwork and logistical nightmare of getting everything done. Bless

you for caring for your neice/nephew and their little one.

, mom of boys

Tim 8

5

and 2

Report post · October 1, 2002

,

Welcome! PMG is a migration disorder, so I'm sure you can find some useful

information here, and great people to support you. Is receiving any

therapies now? what kinds of delays does she have? My son Sam is 11 years

old. He does have a seizure disorder, but it is well controlled and he

hasn't had a seizure in years. He also has left sided weakness and a severe

speech delay. Please feel free to ask questions, we have a lot of

knowledgeable people here to help you.

Christie

Report post · October 1, 2002

,

Welcome! PMG is a migration disorder, so I'm sure you can find some useful

information here, and great people to support you. Is receiving any

therapies now? what kinds of delays does she have? My son Sam is 11 years

old. He does have a seizure disorder, but it is well controlled and he

hasn't had a seizure in years. He also has left sided weakness and a severe

speech delay. Please feel free to ask questions, we have a lot of

knowledgeable people here to help you.

Christie

Report post · October 7, 2002

Hi ,

first: Welcome to the club. I hope the informations you receive here

will help you with Devin.

In regard to your question about a tentative time table when he will be

able to do this or that. I do not think anyone can give you an answere

on that. We all would want to know what our kids can or can´t do in the

future, but my experiance is that the kids themself decide when they are

ready for it. We can give them support and encourage them to do all

these things, but a tentative time table..... Lots of love and

understanding is something that will help our kids a lot. My son is now

5,5 years old. Reading the storys in this groups over the last weeks,

have made me understand that some kids can hardly do anything and others

are doing really well. Timon is one of those who is doing very well and

I hope he will continue to do so. Some days he can drink out of a cup

without any difficulties and other days he can´t. Some days he makes an

effort to talk, other days he just keeps talking in his own language

which no one can understand. So even when he can do some things, which

are more than normal for his age, some other days he can´t. Never give

up in supporting the child, do not think he will never learn it. Look at

the storys of kids in this group. Each day little steps are taken and

that is what we all are working for and that is what keeps everyone going.

Take care,

Bianca

Higgins wrote:

> My nephew- Devin has been diagnosed with hte disease,

> he is 2 now, still not walking, still not talking,

> still unable to swallow properly. I am looking for

> other sources of info. to maybe give us a tentative

> time table to expect when he will begin to do these

> things.

> Thanks

>

Report post · October 12, 2002

> My name is , and my 18 month old son was diagnosed with PMG

Hi ,

I'm , mom of four boys, the youngest 2 being twins, on with a

PMG diagnosis. (Though that is now in dispute. He may not

technically have PMG, but if it looks and acts like it, we figure we

can hang out here) We are sort of neighbors-we live in Bellevue, on

Seattle's east side, and we are frequent flyers at Children's

Hospital in Seattle. Who were your doctors there? Sounds as if you

did not have the most positive experience with Children's.

is now 2 and a half. He has almost no motor abilities, but he

does have decent head control. He uses an eye-gaze board to

communicate, can operate some switch control toys, and is very aware

of his suroundings and family. He's 100% g=-tube fed, just had the

nissen fundoplication--a very good move for his quality of life. So

far he does not have seizures, but we know that could happen. He has

profound microcephaly in addition to abnormally small gyri in the

parietal and occipital lobes--probably caused by multiple strokes

midway through the twin pregnancy.

We look forward to hearing more about you son. If you are ever at

Children's, email me--we could get together and have coffee or

something.

, mom of boys

Report post · October 14, 2002

Hello, rachel!

It was nice to hear your story, I am glad to have found and be a

part of this group. I have wanted for so long to find other families

with children with PMG. For extra support.

Off the top of my head I cannot remember the doctors we saw, but we

did see every neurologist they had at the time. When I get back home

I will look at Skylar's records to see if we have shared some

doctors. I remember the Genetic doctor's name was Hannibal. does

that ring any bells?

Right now, Skylar is getting better. One day his liver was very bad

but the next day he made a complete turn around.

My son is also 100% G-tube fed, his has hypotonia (low muscle tone),

but is benefiting from OT and PT. He wears a pressure vest that will

eventually help him with head control. He, as well as your son, is

aware of his surroundings and who his family is. My son has done the

complete opposite that Seattle said he would do. They originally

told me he should be in a hospice. My husband and I refused to ever

do something like that, and opted to care for him at home. He has

thrived very well, and gets better everyday.

Please feel free to email me anytime. Maybe we could even exchange

phone numbers.

Report post · October 14, 2002

Hello, rachel!

It was nice to hear your story, I am glad to have found and be a

part of this group. I have wanted for so long to find other families

with children with PMG. For extra support.

Off the top of my head I cannot remember the doctors we saw, but we

did see every neurologist they had at the time. When I get back home

I will look at Skylar's records to see if we have shared some

doctors. I remember the Genetic doctor's name was Hannibal. does

that ring any bells?

Right now, Skylar is getting better. One day his liver was very bad

but the next day he made a complete turn around.

My son is also 100% G-tube fed, his has hypotonia (low muscle tone),

but is benefiting from OT and PT. He wears a pressure vest that will

eventually help him with head control. He, as well as your son, is

aware of his surroundings and who his family is. My son has done the

complete opposite that Seattle said he would do. They originally

told me he should be in a hospice. My husband and I refused to ever

do something like that, and opted to care for him at home. He has

thrived very well, and gets better everyday.

Please feel free to email me anytime. Maybe we could even exchange

phone numbers.

Report post · October 14, 2002

Hello, Ruth!

As with all who come to this groups, you are all now in my prayers.

I agree with you about the doctors. They do not know all there is to

know about OMG, in fact, the world still knows only a fraction of

what the brain can do. It seems to me that doctors to not realize

the power of faith and the love of a parent for their child. I have

fought tooth and nail for Skylar, and it has paid off in many ways.

After the initial shock of it all, I was determined to help my son

thrive to his fullest and make sure he got the best care possible.

Spokane has done wonders for him. Being seizure-free has given him

more energy, he is awake more, is gaining weight better, and has

begun to vocalize better than ever. We have lots of resources

helping us to better his life as well.

I have you in my thoughts and prayers.

Love, and Skylar

Report post · October 14, 2002