Re: Experiences with professionals

[Guest guest]

Brett,

My son (13 months) has very experienced providers though the local early

intervention program but on several occasions has seen a different PT (while

hospitalized) and I see how each provider really comes with a different

approach and a different opinion. Sometimes I feel like I would like to

have 2 different PTs working with him and I often think about getting

additional PT privately.

I am from Pittsburgh and we moved to land soon after our PMG son was

born. We were really happy with Childrens Hospital in Pittsburgh. Have you

used the services at The Childrens Institute? If you feel like the

therapists (I assume your son is in the early intervention program?) do not

have a good handle on the situation you may want to get another opinion at

The Childrens Institute or elsewhere.

Definitely trust you own parental instinct- you know your child best!

Good Luck,

Esther

>

>

> Hello everyone,

>

> My wife and I are new to this group. We have an 18-month old boy ()

> with bilateral frontal pmg and have an amazing team of therapists, doctors,

> and family for support here in the Pittsburgh, PA area. However, sometimes

> our therapists have ideas that seem counterproductive from our perspective.

> It's not often, but we feel like we " know " on a little deeper level

> and sometimes we choose not to go down a path our therapists might

> recommend. We really have no way of knowing if we make the " right " decision,

> except that we are seeing progress in a lot of his abilities. I am curious

> to hear about others' experiences with therapists and if your instincts

> about your own child have turned out more positive than not. It's very

> difficult to measure, but I feel like having trust in our parental instincts

> will have the most positive influence.

>

> Thanks for welcoming us to the group. It's great to hear about other people

> with similar situations! And if anyone is in the Pittsburgh area, we'd love

> to meet you and your little ones!

>

> Sincerely,

> Brett

>

>

>

[Guest guest]

Brett

Unfortunately these children are often underestimated. By doctors, therapist,

and school. Follow your gut. His therapists spend (at most) a couple of hours a

week with him. You spend 168 hours a week. You know best. This is a long

journey, and you are the voice of your son. Speak when something doesn't work

and when something does. Both are important. Hospitals are harder and often

inconsistent. I've requested therapists, and asked others to leave. It's hard,

but sometimes it has to be done.

We went to UPMC for a consult (epilepsy). Good facility, didn't like the doc.

Sent from my iPhone

> Brett,

>

> My son (13 months) has very experienced providers though the local early

> intervention program but on several occasions has seen a different PT (while

> hospitalized) and I see how each provider really comes with a different

> approach and a different opinion. Sometimes I feel like I would like to

> have 2 different PTs working with him and I often think about getting

> additional PT privately.

>

> I am from Pittsburgh and we moved to land soon after our PMG son was

> born. We were really happy with Childrens Hospital in Pittsburgh. Have you

> used the services at The Childrens Institute? If you feel like the

> therapists (I assume your son is in the early intervention program?) do not

> have a good handle on the situation you may want to get another opinion at

> The Childrens Institute or elsewhere.

>

> Definitely trust you own parental instinct- you know your child best!

>

> Good Luck,

> Esther

>

>

>

>>

>>

>> Hello everyone,

>>

>> My wife and I are new to this group. We have an 18-month old boy ()

>> with bilateral frontal pmg and have an amazing team of therapists, doctors,

>> and family for support here in the Pittsburgh, PA area. However, sometimes

>> our therapists have ideas that seem counterproductive from our perspective.

>> It's not often, but we feel like we " know " on a little deeper level

>> and sometimes we choose not to go down a path our therapists might

>> recommend. We really have no way of knowing if we make the " right " decision,

>> except that we are seeing progress in a lot of his abilities. I am curious

>> to hear about others' experiences with therapists and if your instincts

>> about your own child have turned out more positive than not. It's very

>> difficult to measure, but I feel like having trust in our parental instincts

>> will have the most positive influence.

>>

>> Thanks for welcoming us to the group. It's great to hear about other people

>> with similar situations! And if anyone is in the Pittsburgh area, we'd love

>> to meet you and your little ones!

>>

>> Sincerely,

>> Brett

>>

>>

>>

>

>

>

[Guest guest]

Brett,

I really feel the best decisions come from our parental gut.  We know our

children the best.  Our therapists have all been pretty right on with advice

but

I can't say the same for some of the doctors.  Do your research, consider

alternatives, and go with what you think is best for your child.  I think we

all

want to help our children so much that sometimes we are desperate to try

anything.  If you disagree with the professionals, let them know and tell them

why and that may also help them understand and learn about your child.  You're

all in this together and having a " team " working together to help your

child is the best solution for everyone.  Good luck!

Stacey Klim 

________________________________

To: " polymicrogyria " <polymicrogyria >

Sent: Sun, January 23, 2011 8:16:30 AM

Subject: Re: Experiences with " professionals "

 

Brett

Unfortunately these children are often underestimated. By doctors, therapist,

and school. Follow your gut. His therapists spend (at most) a couple of hours a

week with him. You spend 168 hours a week. You know best. This is a long

journey, and you are the voice of your son. Speak when something doesn't work

and when something does. Both are important. Hospitals are harder and often

inconsistent. I've requested therapists, and asked others to leave. It's hard,

but sometimes it has to be done.

We went to UPMC for a consult (epilepsy). Good facility, didn't like the doc.

Sent from my iPhone

> Brett,

>

> My son (13 months) has very experienced providers though the local early

> intervention program but on several occasions has seen a different PT (while

> hospitalized) and I see how each provider really comes with a different

> approach and a different opinion. Sometimes I feel like I would like to

> have 2 different PTs working with him and I often think about getting

> additional PT privately.

>

> I am from Pittsburgh and we moved to land soon after our PMG son was

> born. We were really happy with Childrens Hospital in Pittsburgh. Have you

> used the services at The Childrens Institute? If you feel like the

> therapists (I assume your son is in the early intervention program?) do not

> have a good handle on the situation you may want to get another opinion at

> The Childrens Institute or elsewhere.

>

> Definitely trust you own parental instinct- you know your child best!

>

> Good Luck,

> Esther

>

>

>

>>

>>

>> Hello everyone,

>>

>> My wife and I are new to this group. We have an 18-month old boy ()

>> with bilateral frontal pmg and have an amazing team of therapists, doctors,

>> and family for support here in the Pittsburgh, PA area. However, sometimes

>> our therapists have ideas that seem counterproductive from our perspective.

>> It's not often, but we feel like we " know " on a little deeper level

>> and sometimes we choose not to go down a path our therapists might

>> recommend. We really have no way of knowing if we make the " right " decision,

>> except that we are seeing progress in a lot of his abilities. I am curious

>> to hear about others' experiences with therapists and if your instincts

>> about your own child have turned out more positive than not. It's very

>> difficult to measure, but I feel like having trust in our parental instincts

>> will have the most positive influence.

>>

>> Thanks for welcoming us to the group. It's great to hear about other people

>> with similar situations! And if anyone is in the Pittsburgh area, we'd love

>> to meet you and your little ones!

>>

>> Sincerely,

>> Brett

>>

>>

>>

>

>

>

[Guest guest]

Hi Brett,

Our son Micah (Bilateral Perisylvian Polymicrogyria Syndome) has left side

weakness. His occupational therapist wanted to do serial casting on his right

hand. From his hand to his shoulder. All because he wouldn't use his left hand

WITH HER. She thought that if she restrained his whole right arm, it would force

him to use his left hand. Needless to say, I said no. After weeks of eplaining

to her, that he uses his left hand she now sees. You and your wife know Bejamin

better than anyone. Its okay to disagree and say no. When we first found out

that our son had PMG, we were told he would never walk, talk, ect... He's almost

4 years old and can run, jump, play and can also communicate by using basic

sign. He proved everyone wrong. Best of luck to you and your family!

-

Sent on the Sprint® Now Network from my BlackBerry®

Experiences with " professionals "

Hello everyone,

My wife and I are new to this group. We have an 18-month old boy () with

bilateral frontal pmg and have an amazing team of therapists, doctors, and

family for support here in the Pittsburgh, PA area. However, sometimes our

therapists have ideas that seem counterproductive from our perspective. It's not

often, but we feel like we " know " on a little deeper level and

sometimes we choose not to go down a path our therapists might recommend. We

really have no way of knowing if we make the " right " decision, except that we

are seeing progress in a lot of his abilities. I am curious to hear about

others' experiences with therapists and if your instincts about your own child

have turned out more positive than not. It's very difficult to measure, but I

feel like having trust in our parental instincts will have the most positive

influence.

Thanks for welcoming us to the group. It's great to hear about other people with

similar situations! And if anyone is in the Pittsburgh area, we'd love to meet

you and your little ones!

Sincerely,

Brett