RE: MRI/EEG--Are we wrong?

[Guest guest]

i have a son of 2 and a half years when my son was a baby i new there

was a problem they could not come up with a name for what was wrong

with my child and i found that the most frustrating part! about 6

months later they gave me the name polymicrogyria what was this?? i

dont personally think givin a name of the problem makes any

difference. i live each day as it comes have learnt to except my

child is different and enjoy every day with daniel he is such a

delight!! if an mri would put your mind to rest i say go for it you

have nothing to loose i hope what ever desision you decide to make is

the right one for you take care

sarah and daniel! x

[Guest guest]

Beth,

First, let me console you on the loss of your daughter. I too had

twins (a boy and a girl), in 2003 at 32 weeks. My daughter passed

away. It is very hard to lose one child while still having another

there as a reminder, and to worry about. However, your daughter now

has her own personal guardian angel watching over her.

In regards to whether you should do another MRI: my opinion is yes.

This is just from personal experience, so take it as you will. My son

Ethan (another twin, though his twin brother is healthy) is 13 months

old and was diagnosed with PMG at 6 months. He also has a rare

chromosome deletion, retinoblastoma, severe reflux, a nissem

fundoplication, g-tube, and farsighted. We just had a 2nd MRI done

on him for many reasons. One is because I want to monitor the PMG and

confirm the diagnosis. Another is that he is at risk for a type of

brain tumor, and that is the only way to detect it. He was sedated

for the procedure, and compared to other tests he has done, it was

the least invasive.

Also, if you get to the point where you want to apply for financial

assistance, be it medicaid or some other state support, you will need

a diagnosis to get it. Even if you know she is disabled, to qualify

for support you must have a diagnosis. I am going through that maze

right now as we are applying for different aid, and no one seems to

understand Ethan's diagnosis as it is so unusual.

Finally, I believe knowledge is power. The more you know about your

child's condition and what causes it, the more you can find treatment

and therapies to help her. Every child is different, even when they

have the same diagnosis. However, knowing what is wrong enables you

to network with other parents who have similar situations and do

research to find what will best enable your daughter to live life to

her fullest potential.

I know that right now it is hard to think of the future. You are

still grieving the loss of one daughter and fighting for the life and

health of the other. However, things will slow down and become

more " normal " and you want to be prepared.

Good luck and God Bless,

- mom to Cameron - 3 years, - angel for 3 years, Ethan -

13 months and Braden-13 months.

[Guest guest]

Beth,

I think the " moodiness " is probably seizure related if she isn't

responding in these ways because of her enviroment. Our little Max

with often smile with seizures and is also more aggitated from

seizure activity.

Hope this helps.

Joanie (Max almost 4)

[Guest guest]

Hi Beth:

A tough question. My wife and I are usually split on issues like these: I

tend to want to do all kinds of tests, and Ali, my wife, seeing no practical

implications and believing we are better judges of our daughter's state than

any MRI (or whatever), is inclined to pass on these. And -- this is just me,

of course-- but the futher along we get with Io -- she turns two this July

-- the more I see my wife's p.o.v. So many of these tests are a great

aggravation and of no practical use. Of course there are all kinds of

treatments for our kids that are worth pursuing, and have been -- from what

I've read here -- incredibly worthwhile, e.g. botox, hamstring ops, etc. I

don't know. One needs to be proactive. But the more time spent pathologizing

one's child is less time spent loving them as children.

Keep us posted!

Best wishes from -

, Ali, Io (22 months)

& gt;From: & quot;pj7335 & quot; & lt;murphmags@... & gt;

& gt;Reply-To: polymicrogyria

& gt;To: polymicrogyria

& gt;Subject: MRI/EEG--Are we wrong?

& gt;Date: Fri, 28 May 2004 15:47:17 -0000

& gt;

& gt;Hello,

& gt; I have been reading posts on this site for many months, without

& gt;introducing myself. My husband and I had identical twins in April,

& gt;2003. , unfortunately, was stillborn, and was 1 1/2

& gt;pounds (born at 26 wks) due to complications from TTTS. An MRI was

& gt;done when was 2 weeks old (28 weeks gestation), and we were

& gt;told she had lisencephaly, and would not live more than 2 years. We

& gt;were encouraged to unplug the vent and allow her to die. A second

& gt;opinion indicated that it was too difficult to determine whether it

& gt;was true liss or just an immature brain. The end result was that

& gt;there just aren't many MRIs done on babies 12 weeks before they're

& gt;due to be born, and no one knew for sure. Several ultrasounds have

& gt;been done since, that indaicate gyral development, although not

& gt;normal. Dr. Dobyns suggested a repeat MRI, and felt that her

& gt;history leads him to believe she may have PMG.

& gt; is doing well. She is delayed for sure, but has already

& gt;exceeded everything we have ever been told she would do (she smiles,

& gt;rolls, and now is beginning to sit). She is extremely moody. She

& gt;cried for the first 10 months of her life, and now will go from

& gt;crying to laughing and back to crying with little reason or warning.

& gt;No one seems to know what is wrong, and I am wondering if this could

& gt;be some underlying seizure activity. She has not had any outward

& gt;seizures. 's pediatrician is not sure that we should repeat

& gt;the MRI, as it would not change the way she is treated. Her

& gt;pulmonologist agrees, but feels an EEG may be helpful. We are

& gt;really torn, and know the doctors will do what we wish. I guess the

& gt;MRI is really more for us to know what is going on, than for her.

& gt;Is it selfish to want this information? Is there another reason to

& gt;have a definite diagnosis besides peace of mind? And would there be

& gt;anything we may do, medically or develpomentally different if we

& gt;knew for sure? If anyone has any suggestions, we are open to them!

& gt;Thank you so much for your time, Beth

& gt;

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