Suggestions Please!

[Guest guest]

Kaitlyn's Neurologist would like to proceed with a spinal tap to

determine why her optic nerves are elevated. The MRI from September

13th didn't show any findings consistent with elevated optic nerves

but did show that the sulci (furrows or grooves on the surface of

the brain) are more prominent in the right cerebral hemisphere than

the left and moderate posterior (situated at or toward the hind part

of the body) cervical (relating to the neck) adenopathy (enlargement

of a lymph node). It also showed findings we were already aware of -

persistent abnormal posterior periventricular white matter flair

(characterized by the death of the white matter of the brain due to

softening of the brain tissue, which in Kaitlyn's case was caused by

asphyxiation during the birthing process) and Chiari I anatomy (CMI)

without syrinx (characterized by herniation of the cerebellum

through the large opening in the base of the skull into the spinal

canal). The concern I have with this is it is " risky " for CMI

patients to undergo a spinal tap since it can cause a downward

suction which may cause further herniation of the cerebellar tonsils

and could lead to additional pressure on the spine and ultimately

paralysis. YIKES, how do I trust ANY Dr. to do this

procedure?!?!?! Are there any alternatives to spinal taps??? No

one has interpreted these results to me, the only information I have

received so far is that there is some extra cerebral spinal fluid on

the left side of her brain and the left side is smaller

and " smoother " than the right. I would sure like to know what that

means, the only thing I can do is search the internet and assume.

So far the information I have gotten off of the internet include;

" Asymmetry of cerebral sulci may indicate an acute infarct (stroke)

on the side where the sulci are smaller. "

and

Moderate Posterior cervical adenopathy can indicate viral

infections, bacterial infections, or even malignancies.

So, needless to say I really don't want to assume. I would really

like to get a second opinion but she is on Colorado State Medicaid

and our options are limited. Is there anyone out there with a child

with PVL, CP, or CMI that might have some insight regarding

Neurological issues???

Thanks,

Naomi

[Guest guest]

Karyn,

I do not know if my comments will be of help, but what I had experience with my

daughter (19 yrs) it took very, very long for her to sit down and concentrate

for loger time in an activity.  She was jumping from one activity to another. 

I have to mention that Ana has been most of the time in a special ed school in

Belgium.  When she was younger and we were in Honduras, she attended regular

kindergarten.  Ana tends to " plop " when frustrated or when she cannot get her

own way.  She also went through big changes in life when she was 9 yrs, she did

not see her dad for 6 months (he had to come before us)  and then we moved to

Belgium, where she had to adapt to a totally new environment:  language,

culture and climate.  I know is hard, but I am sure she will adjust to all the

changes in your life.  Good luck!

Bonnie

>________________________________

> De: Karyn <thebombtexas@...>

>Para:

>Enviado: Domingo, 27 de noviembre, 2011 15:44:16

>Asunto: Suggestions please!

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>Forgive the cross post if you are also on the Facebook page!

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>I need some suggestions!! My daughter is in the regular kindergarten classroom.

There is an aide in the class most of the time and she has a 1:1 tutor that

comes in for a few hours every week. She has difficulty sitting and doing her

work. She appears to get fatigued easily andA will just shut down and lay down

and suck her thumb but if it is somethng she wants to do, she jumps up and goes

at it full force. The teacher thinks she is not learning because she will lay

down and turn her head the other way but she comes home and reenacts her day at

school. I have difficulty getting her to sit down and work with me on her

worksheets from school. We have a respite provider that is an education major

and she has even observed her in the classroom as part of her college course and

she has difficulty with her sitting down at home to do it. We go back to

ARD/IEP to review progress next week. I keep thinking they are going to

recommend placement in a self

contained classroom because they went really out of their comfort zone to put

her in a regular classroom. Please help! It does not help that I recently went

through a divorce with her father and in the process of buying another house and

will be moving soon as well so we have major life transitions thrown in the mix

and her Dad only sees her for a few hours once a week.

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