Re: ACM and Children--Venting/NCC?

[Guest guest]

In a message dated 6/6/99 8:20:54 PM Eastern Daylight Time, mychel@...

writes:

<< worry that our 3 year old Mason, that has had 9

surgical procedures due to his chiari, will continue to have problems as he

grows. If the adult patients regress slowly....imagine a 3 year old that

has a TREMENDOUS amount of growing and living to do. What is his future? >>

You know I think that this is on the minds of all of us parents, even those

with children with other birth defects or problems. " What is the future? " -

wish someone could answer that for all of us. Even though is 17, she

still has quite a few years ahead of her. You take away the Chiari and I

think she could have a pretty good life ahead of her, in spite of the other

problems.

Believe me, I understand your frustration!!

Tory ('s mom)

17ys. old, craniofacial abnormalities, midline facial cleft, hydrocephalus,

growth hormone (weighs 56lbs.) and thyroid defecient, blind, choanial

atresia, optic nerve hypoplasia, artificial tear duct, 12-P deletion, sensory

intergration disorder, latex allergy, nystagmus, astigmatisms, probable

malignant hyperthermia, ACM I w/30mm herniation, basilar impression. June10,

98' suboccipital craniectomy and lamenectomy of C1 & C2. Aug. 10, 98' dura

graft. History of 36 surgeries. (and musically talented) SUCH A SPECIAL

LITTLE GIRL! Now are being told Spina Bifida with Chairi II, not Chiari I.

------------------------------------------------------------------------

eGroups.com home: /group/chiari

- Simplifying group communications

[Guest guest]

Dear :

I am sorry Mason is having a hard time. I can tell you that my son

was decompressed before the age of 2 and he is doing wonderfully. He

is one of those lucky people who gets decompressed and rarely has to think

about Chiari ever again. Thank God because he has plenty of other things to

think about.

Love (ACM 1, mother to Faith anencephalic angel, , SB, ACM 2,

Tethered Cord, Arachnoid Cyst, Total bowel and bladder failure, etc...,

McKenzie and Hannah hopefully healthy!!)

------------------------------------------------------------------------

eGroups.com home: /group/chiari

- Simplifying group communications

[Guest guest]

The future? It scares me to death....Fallon doesn't have any other

complicating factors other than chiari, syringomylia and all the things those

can cause. I know that after 7 operations (4 decompresssions...) that she

still has very little CSF flow...the mri report shows a LARGE area for flow,

yet there remains very little. We know that she does not have good blood

flow through the brain either. BOTH of these factors show there is still

obstruction.....is she a stroke waiting to happen? Possibly an anuerism?

What will taking baclofen, clozapam and now this beta blocker do to her as

she gets older? Is her brain slowly dying due to lack of blood flow? Will

she have children? How will she get through pregnancy w/o her medications

she depends on daily? Will she achieve all that she wants to academically?

Will her physical body be able to keep up? Will the instability in her neck

from the lamenectomies require a fusion at some point..is the discomfort she

feels while bending forward and a 2mm shift in the vertebrae something that

will get worse, stay the same or is she an accident waiting to happen? The

symptoms go away and then come back, the longest she has gone doing well is 6

months...IF they reappear, which " new " symptoms will appear? How will she

handle being sick again, emotionally? At what point will she finally " give

up? " ...

The future brings so many unpleasant suspisions to my mind, that I can't

think about it. The only way I can TRY to prepare, is to continue to educate

myself with chiari etc and stay involved even when SHE is feeling better, and

chiari is the last thing I want to think about....but I know I must continue.

I appreciate every good moment that Fallon has and count is nothing less than

a miracle...I want the same for the future.

Billie Jo

Fallon's Mom

------------------------------------------------------------------------

eGroups.com home: /group/chiari

- Simplifying group communications

[Guest guest]

>

> My husband and I just worry that our 3 year old Mason, that has had 9

> surgical procedures due to his chiari, will continue to have problems as he

> grows. If the adult patients regress slowly....imagine a 3 year old that

> has a TREMENDOUS amount of growing and living to do. What is his future?

>

> Its that tremendous amount of growing that scares the pants off me, though in

saying that the Doc's continue to insist to me that if we get to 5yrs the

major part of growing is done (relating to head etc). Reading posts from adult

suffers makes me wonder the truth of this, as the regression does seem to

continue.

No-one can tell me the future for my very special girl, but even the crappy days

are days that she is here and that alone makes my heart sing. She would have

been called a cot death had we not been so lucky that first time, I always

wonder how many other Chairi Babies that die are actually called Cot Death?

I guess I am one of the lurkers and seekers that ronny talks about, constantly

on the look for input, input and more input. Knowing that other families

are suffering second hand from this, has taken away that feeling of being alone

with this. I still wish somebody could give me a clue on where this is going but

each day as it comes.

Kym

>

>

>

>

>

>

>

>

>

------------------------------------------------------------------------

eGroups.com home: /group/chiari

- Simplifying group communications

[Guest guest]

In a message dated 6/6/99 10:45:04 PM Eastern Daylight Time,

gecko@... writes:

<< I always wonder how many other Chairi Babies that die are actually called

Cot Death? >>

What is Cot Death?

------------------------------------------------------------------------

eGroups.com home: /group/chiari

- Simplifying group communications

[Guest guest]

In a message dated 6/7/99 7:47:20 AM Eastern Daylight Time, Tmv1969@...

writes:

<< What is Cot Death? >>

I'm going to guess that this is the same thing as " crib death " .

Tory ('s mom)

------------------------------------------------------------------------

eGroups.com home: /group/chiari

- Simplifying group communications

[Guest guest]

HI All

I am one of those lurkers also, but just wanted to comment on the children

with chiari and their future. This is something I wonder about with my son

all the time. He has been doing great the past yr since his 4 surgeries.

I am not going to say he is totally symptom free but his quality of life has

greatly improved. I think as a mother there will always be worrying with this

and a constant wondering of what will happen next.

Lorraine (ryan's mom)

------------------------------------------------------------------------

eGroups.com home: /group/chiari

- Simplifying group communications

[Guest guest]

<< The future? It scares me to death.... >>

Gosh, Billie Jo. I've had the same exact thoughts and fears. It is so

comforting to know I am not in this alone. I, too, count each day Kenny is

symptom free as a miracle.

As others have expressed to Dawn, we are all in this together. The fears,

tears, sorrows and miracles shared here make bearing the pain so much easier.

I mean it when I say without God and this group I wouldn't have made it this

far.

To those of you who are just starting on this chiari rollercoaster ride, you

will find that somewhere in this group is someone who is experiencing the

same humps and bumps you are. This highs and lows, the starts and stops have

all been more tolerable for me because of my new friends here. To all of

you, hang in there, reach out when you need it and give when you're able. We

all need each other.

So thankful for all of you,

Peppi

------------------------------------------------------------------------

eGroups.com home: /group/chiari

- Simplifying group communications