Re: generalized... not occipital

[Guest guest]

le, as for the neuro I don't have much advice. We have only ever seen one.

She also said that not to worry about seizures, and well just have to wait and

see. is almost six. He started walking the day before his first pt

appointment. And that was at two years of age. He has right sided weekness and

delay in his fine moter skills. He also is non verbal but does do a lot of

signs. And no signs of seizures so far. He also had some eating issues, choked

on a lot of foods but that has improved a great deal. Its all a waiting game for

all of us, it doesn't seem to effect any of our kids in the same way, but almost

everyone I've talked to gas said that they are very happy kids. Hang in there!

Its very frustrating not to have the answers you want or need! Janell mother of

5 years old

Sent from my Verizon Wireless BlackBerry

generalized... not occipital

this is my last attempt to ask questions here... we finally saw the neuro today

and i feel more confused then when we went in. we had been told for months that

jaxens brain was effected in the occipital lobes but this dr says no its the

whole brain how could they miss that ? i asked about seizures and he said no not

to worrie about them.. we have not had any. he said he would most likely have

some developmental delays but does not seem to be very delayed so far so he was

not to worried we are gonna start pt and speech therapy as well as the ot we are

already getting as a precaution he said. and that was it all he said ... im so

confused i thought there was more to worry about and i thought seizures were a

given... anyone have advice or anything you can say that i should expect or do

it would be appriciated thank you

[Guest guest]

le

My doctors missed things. For 18 months they had a quad coil high resolution

MRI. First doc that read it said it was normal. That was outrageous. My

daughters doc read it and said she had small patches of PMG in her frontal lobe.

Enter new doc: 80% of her left hemisphere and cortical displasia. My daughter

was 11 years old when this MRI was taken and until that point we had been told

she had a stroke while I was pregnant. Exhausting.

80% or more of PMG kids have seizures. So, it's a likelihood not a given. My

daughter had stable well controlled epilepsy until Jan of 2008. Now she is

intractable.

How do u feel in your gut about what tge docs say? That's what matters. If they

are wrong nothing is going to alter your childs future.

My daughter walks with a slight limp and can't use her right hand well. She had

executive functioning disorder, but a normal iq. She's never had feeding issues.

Sent from my iPhone

> this is my last attempt to ask questions here... we finally saw the neuro

today and i feel more confused then when we went in. we had been told for months

that jaxens brain was effected in the occipital lobes but this dr says no its

the whole brain how could they miss that ? i asked about seizures and he said no

not to worrie about them.. we have not had any. he said he would most likely

have some developmental delays but does not seem to be very delayed so far so he

was not to worried we are gonna start pt and speech therapy as well as the ot we

are already getting as a precaution he said. and that was it all he said ... im

so confused i thought there was more to worry about and i thought seizures were

a given... anyone have advice or anything you can say that i should expect or do

it would be appriciated thank you

>

>

[Guest guest]

, this is a little off the subject bit how are you and your daughter

doing after the accident and surgery?

Sent from my Verizon Wireless BlackBerry

Re: generalized... not occipital

le

My doctors missed things. For 18 months they had a quad coil high resolution

MRI. First doc that read it said it was normal. That was outrageous. My

daughters doc read it and said she had small patches of PMG in her frontal lobe.

Enter new doc: 80% of her left hemisphere and cortical displasia. My daughter

was 11 years old when this MRI was taken and until that point we had been told

she had a stroke while I was pregnant. Exhausting.

80% or more of PMG kids have seizures. So, it's a likelihood not a given. My

daughter had stable well controlled epilepsy until Jan of 2008. Now she is

intractable.

How do u feel in your gut about what tge docs say? That's what matters. If they

are wrong nothing is going to alter your childs future.

My daughter walks with a slight limp and can't use her right hand well. She had

executive functioning disorder, but a normal iq. She's never had feeding issues.

Sent from my iPhone

> this is my last attempt to ask questions here... we finally saw the neuro

today and i feel more confused then when we went in. we had been told for months

that jaxens brain was effected in the occipital lobes but this dr says no its

the whole brain how could they miss that ? i asked about seizures and he said no

not to worrie about them.. we have not had any. he said he would most likely

have some developmental delays but does not seem to be very delayed so far so he

was not to worried we are gonna start pt and speech therapy as well as the ot we

are already getting as a precaution he said. and that was it all he said ... im

so confused i thought there was more to worry about and i thought seizures were

a given... anyone have advice or anything you can say that i should expect or do

it would be appriciated thank you

>

>

[Guest guest]

Janell

We are ok. I got to see her foot when they did the cast change. Wow!! She has

an arch in her foot!! It's amazing how good it looked even with all the

swelling. She gets another new cast a week from today, and then she can start

walking again.

I've had 2 surgeries in 2 weeks. One on my hand, cross fingers it worked, and

injections in my neck. It's improving every day.

All in all, it's a slow process but we are healing. Quite a whirlwind!!

Sent from my iPhone

> , this is a little off the subject bit how are you and your daughter

doing after the accident and surgery?

> Sent from my Verizon Wireless BlackBerry

>

> Re: generalized... not occipital

>

> le

>

> My doctors missed things. For 18 months they had a quad coil high resolution

MRI. First doc that read it said it was normal. That was outrageous. My

daughters doc read it and said she had small patches of PMG in her frontal lobe.

Enter new doc: 80% of her left hemisphere and cortical displasia. My daughter

was 11 years old when this MRI was taken and until that point we had been told

she had a stroke while I was pregnant. Exhausting.

>

> 80% or more of PMG kids have seizures. So, it's a likelihood not a given. My

daughter had stable well controlled epilepsy until Jan of 2008. Now she is

intractable.

>

> How do u feel in your gut about what tge docs say? That's what matters. If

they are wrong nothing is going to alter your childs future.

>

> My daughter walks with a slight limp and can't use her right hand well. She

had executive functioning disorder, but a normal iq. She's never had feeding

issues.

>

>

>

> Sent from my iPhone

>

>

>

> > this is my last attempt to ask questions here... we finally saw the neuro

today and i feel more confused then when we went in. we had been told for months

that jaxens brain was effected in the occipital lobes but this dr says no its

the whole brain how could they miss that ? i asked about seizures and he said no

not to worrie about them.. we have not had any. he said he would most likely

have some developmental delays but does not seem to be very delayed so far so he

was not to worried we are gonna start pt and speech therapy as well as the ot we

are already getting as a precaution he said. and that was it all he said ... im

so confused i thought there was more to worry about and i thought seizures were

a given... anyone have advice or anything you can say that i should expect or do

it would be appriciated thank you

> >

> >

>

>

>

[Guest guest]

That is awesome for her! Its crazy what they can do! I'm so glad to hear your

hanging in there. I wish you both the best:). Janell

Sent from my Verizon Wireless BlackBerry

Re: generalized... not occipital

>

> le

>

> My doctors missed things. For 18 months they had a quad coil high resolution

MRI. First doc that read it said it was normal. That was outrageous. My

daughters doc read it and said she had small patches of PMG in her frontal lobe.

Enter new doc: 80% of her left hemisphere and cortical displasia. My daughter

was 11 years old when this MRI was taken and until that point we had been told

she had a stroke while I was pregnant. Exhausting.

>

> 80% or more of PMG kids have seizures. So, it's a likelihood not a given. My

daughter had stable well controlled epilepsy until Jan of 2008. Now she is

intractable.

>

> How do u feel in your gut about what tge docs say? That's what matters. If

they are wrong nothing is going to alter your childs future.

>

> My daughter walks with a slight limp and can't use her right hand well. She

had executive functioning disorder, but a normal iq. She's never had feeding

issues.

>

>

>

> Sent from my iPhone

>

>

>

> > this is my last attempt to ask questions here... we finally saw the neuro

today and i feel more confused then when we went in. we had been told for months

that jaxens brain was effected in the occipital lobes but this dr says no its

the whole brain how could they miss that ? i asked about seizures and he said no

not to worrie about them.. we have not had any. he said he would most likely

have some developmental delays but does not seem to be very delayed so far so he

was not to worried we are gonna start pt and speech therapy as well as the ot we

are already getting as a precaution he said. and that was it all he said ... im

so confused i thought there was more to worry about and i thought seizures were

a given... anyone have advice or anything you can say that i should expect or do

it would be appriciated thank you

> >

> >

>

>

>

[Guest guest]

thank you everyone the mri was really clear just think the first dr didnt know

what he was looking at still gonna try to get another opinion just to feel

better. jax has been doing really well has had no feeding issues or seizures a

little low muscle tone and is about a month behind developmentally on motor

skills. im just gonna let it go and let him do what he is gonna do. thanks again

for your response its kinda hard when know one knows anything about what is

" wrong " with your child .

>

> > this is my last attempt to ask questions here... we finally saw the neuro

today and i feel more confused then when we went in. we had been told for months

that jaxens brain was effected in the occipital lobes but this dr says no its

the whole brain how could they miss that ? i asked about seizures and he said no

not to worrie about them.. we have not had any. he said he would most likely

have some developmental delays but does not seem to be very delayed so far so he

was not to worried we are gonna start pt and speech therapy as well as the ot we

are already getting as a precaution he said. and that was it all he said ... im

so confused i thought there was more to worry about and i thought seizures were

a given... anyone have advice or anything you can say that i should expect or do

it would be appriciated thank you

> >

> >

>

>

>

[Guest guest]

wow just found an article about pmg and i was reading the section about bgp and

it list associated conginital abnormalities and my son has 3 out of the 6

listed.. macrocephaly, limb defects ( adducted thumbs) and low set ears the

others have not been seen in him. i know its nothing huge but its interesting

being able to put 2 and 2 together. the only other interesting part was that

this is all abnormalities are all seen in other family members like my husband

and father and father in law. ok just sharing. we had genetic testing a month

after he was born because of these things and they could not put them together.

thanks for listening

> > >

> > > > this is my last attempt to ask questions here... we finally saw the

neuro today and i feel more confused then when we went in. we had been told for

months that jaxens brain was effected in the occipital lobes but this dr says no

its the whole brain how could they miss that ? i asked about seizures and he

said no not to worrie about them.. we have not had any. he said he would most

likely have some developmental delays but does not seem to be very delayed so

far so he was not to worried we are gonna start pt and speech therapy as well as

the ot we are already getting as a precaution he said. and that was it all he

said ... im so confused i thought there was more to worry about and i thought

seizures were a given... anyone have advice or anything you can say that i

should expect or do it would be appriciated thank you

> > > >

> > > >

> > >

> > >

> > >

[Guest guest]

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1736054/pdf/v042p00369.pdf there is

the link its page 372 second paragraph and yea would be interesting to see

everyones kidos i posted a pic of jaxen here under photos gonna try to post a

newer one the folder is jaxen

> > > > >

> > > > > > this is my last attempt to ask questions here... we finally saw the

neuro today and i feel more confused then when we went in. we had been told for

months that jaxens brain was effected in the occipital lobes but this dr says no

its the whole brain how could they miss that ? i asked about seizures and he

said no not to worrie about them.. we have not had any. he said he would most

likely have some developmental delays but does not seem to be very delayed so

far so he was not to worried we are gonna start pt and speech therapy as well as

the ot we are already getting as a precaution he said. and that was it all he

said ... im so confused i thought there was more to worry about and i thought

seizures were a given... anyone have advice or anything you can say that i

should expect or do it would be appriciated thank you

> > > > > >

> > > > > >

> > > > >

> > > > >

> > > > >