RE: interpreterpting the MRI

[Guest guest]

Hi Bonnie,

I know I am quite a worry wart myself. She sounds a little like my son

who is 20 months. He is not able to sit up unassisted, crawl, walk or

talk. But he is starting to show signs of wanting to talk. Grant has a

six year old sister around who runs her mouth constantly, so I think it

is good for her to be around him, he seems to respond to her and is

associating play with her. Don't worry, things may be slow, but I

believe our angels will get there. Grant's neurologist says he will

walk, talk etc. but not until he reaches four or five. Grant's MRI

showed areas around the sylvian fissure as well. Grant still has

seizures but not as often as he use to, because of the meds. It is

wonderful that you are so involved in your grandsons life.

Dianna

interpreterpting the MRI

Hi Everyone:

I am the grandmother to Lindsey, 21 months old with PMG. My

daughter and son-in-law had Lindsey's MRI done last June. Just today

we were sitting together talking about how we never really had things

explained to us very clearly. I guess they should make another

appointment to get a better understanding of what it all means due to

the fact that I think they were in a state of shock when they were told.

The ped neurologist didn't paint a very pretty picture so I think my

daughter didn't want to pursue much more at the time. Much seemed left

to be explained. She will have another MRI done this May. Lindsey's

report indicated that the PMG involves frontal parietal and portions of

the temporal lobes and insula. Also the sylvian fissures are poorly

formed bilaterally. The lateral and third ventricals are midly

enlarged. The occipital/posterior temporal lobes and centerior medial

aspect of the frontal lobes appear normal. Could anyone comment on this

portion of the MRI or as to the severity? From reading this does anyone

have a child with similar findings? The doctor kind of left all of us

in the dark but then we wern't in the best condition either to listen.

So maybe he figured it best. I'm sure he will explain in greater detail

at the next appointment which will be sometime in the spring. The

report sounds pretty severe doesn't it but we just keep the faith and

hope for a vast improvement. Lindsey had an EEG done last summer as

well and was seizure free as she is now to the best of our knowledge.

Cognitively she seems fine but is delayed signifitantly in her

milestones such as sitting up, crawling, walking, and talking. She is

improving though with therapies 4X's week. She eats well from a spoon

and is very healthy otherwise. She is so happy all the time and we are

so grateful to have her. She is such a blessing to our family. Any

comments on the above would be greatly appreciated. Thank you and God

Bless all of you folks for sharing. This is a wonderful site. I'm so

grateful I found it. These beautiful children as so fortunate to have

such a caring bunch of parents and grandparents. What a gift in itself!

Bonnie (grandmother to Lindsey 21 months old with PMG)

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[Guest guest]

Bonnie,

I can't help you specifically with interpreting Linsey's MRI report, but I

just wanted to let you know that the MRI will not tell you what Lindsey's

abilities will be. Some educated guesses can be made by the areas affected,

but there are many kids on this lists whose MRI suggest that they would have

far less function than they actually due. Who else has heard, " By the look

of his MRI, I expected him to be doing much worse/far less. "

So keep your faith, keep up the therapy, and let Linsey show you what she

will be able to do.

Best wishes to all of your family,

Chiristie, mom to Sam (12 years old, Bilateral Perisylvian PMG)

[Guest guest]

Chiristie is giving good advice. NO ONE will be able to tell you what you child

can and can not accomplish.

Get ready for an incredible journey with many highs and lows but one with rich

rewards.

You will discover much more depth of yourself than you ever imagined.

I have also heard the old phrase............... " By the look

of his MRI, I expected him to be doing much worse/far less. "

Take care,

Donna(mom to Trevor,8 yrs old PMG and BPNH, seizure disorder(partial

complex),Agenesis of the corpus callosum,panhypopititurism,Optic Nerve

Hypoplaisa and cortical visual impairment,hydrocheyelus and cyst on base of

brainstem(shunted 7/99), allergies and asthma, GI problems, autistic like

tendancies(PDD-NOS),cognitive delays.............whew!

[Guest guest]

Christie:

Thank you for the encouragement. Just to hear these things from someone who

understands, helps boost our moral. I believe what you say is true but to

hear it from someone else is encouraging. Thanks again.

God Bless

Bonnie, grandmother to Lindsey (21 months old, PMG)

RE: interpreterpting the MRI

> Bonnie,

>

> I can't help you specifically with interpreting Linsey's MRI report, but I

> just wanted to let you know that the MRI will not tell you what Lindsey's

> abilities will be. Some educated guesses can be made by the areas

affected,

> but there are many kids on this lists whose MRI suggest that they would

have

> far less function than they actually due. Who else has heard, " By the

look

> of his MRI, I expected him to be doing much worse/far less. "

>

> So keep your faith, keep up the therapy, and let Linsey show you what she

> will be able to do.

>

> Best wishes to all of your family,

>

> Chiristie, mom to Sam (12 years old, Bilateral Perisylvian PMG)

>

>

>

>

>

[Guest guest]

Hello Donna:

I just finished thanking Christie for her note of encouragement and now I

will thank you as well. Like I told Christie....to hear these encouraging

messages from other people helps alot just becuase you know they've " been

there " . That's why this site is so valuable. Since Lindsey has been

diagnosised with PMG, I have had a whole new respect for all the parents and

family members caring for children stricken with these disabilities. When

you find yourself in this position, it forces you to take a step back and

revise your way of thinking if you know what I mean. It turns the word

perfection upside down. At least that's the way I feel. In our family we

have learned acceptance and unconditional love in the truest form. Lindsey

doesn't walk or talk, but we seem to communicate with her in a way that

others will never understand and I can't imagine life without our little

Lindsey. I'm sure you feel the same as well as the other parents.

Lindsey for the first time in her life is very sick fighting a virus or

bacterial infection. Fever, wheezing, not eating or drinking much. She has

been on an antibotic for 5 days now. I babysat her today and tonight.

Tonight before my daughter got home from work my son-in-law purchased a

nebulizer/medcine per the doctor. I hope it helps with her breathing but I

have my doubts. Her cough sounds pretty tight . I'm not sure the nebulizer

will cut through the mucus. She just seems to be struggling for air. We'll

see tomorrow when my daughter takes her to the doctor again. Lindsey just

looked so pitiful tonight, I did nothing but pray for her all the way home.

I wouldn't be surprised if they didn't admit her into the hospital tomorrow.

My youngest daughter had severe asthma as a young child and I think this

brought back so many bad memories for me. Just when I thought these days

were over for me now that my girls are grown and married......Bam!!! Ha! I

guess it never ends and it's O.K. I'm just grateful to be in a position to

help my daughter and her family when she needs it. Sorry I'm running on

like this but I guess I'm all wired up from the days happenings. I needed

to vent to those who know first hand what I'm talking about!

God bless each and everyone of you,

Bonnie (grandmother to Lindsey 21 months old w/PMG)

Re: interpreterpting the MRI

> Chiristie is giving good advice. NO ONE will be able to tell you what you

child can and can not accomplish.

> Get ready for an incredible journey with many highs and lows but one with

rich rewards.

> You will discover much more depth of yourself than you ever imagined.

>

> I have also heard the old phrase............... " By the look

> of his MRI, I expected him to be doing much worse/far less. "

>

> Take care,

>

> Donna(mom to Trevor,8 yrs old PMG and BPNH, seizure disorder(partial

complex),Agenesis of the corpus callosum,panhypopititurism,Optic Nerve

Hypoplaisa and cortical visual impairment,hydrocheyelus and cyst on base of

brainstem(shunted 7/99), allergies and asthma, GI problems, autistic like

tendancies(PDD-NOS),cognitive delays.............whew!

>

>

>

>