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C-PALSY  June 2004

C-PALSY June 2004

Subject:

FW: New members

From:

Amy Frick <[log in to unmask]>

Reply-To:

St. John's University Cerebral Palsy List

Date:

Fri, 25 Jun 2004 15:14:44 -0400

Content-Type:

text/plain

Parts/Attachments:

Parts/Attachments

text/plain (240 lines)

Hi Dionne and Tamar,
Thanks for writing back - I did join the parents' site too, but I
haven't e-mailed anyone there yet.  This site has so many e-mails and
good topics that I don't know if I will have time to join two.  Our
Early Intervention PT and private PT both gave us and copy of a page out
of a book we are going to buy - "Children with Cerebral Palsy - A
Parents' guide" - Edited by Elaine Geralis (below).  We do not know how
she got this, my pregnancy was normal (puking and pains), I did complain
that she was not moving as much as my first child, there were times that
I could hardly feel her and we would go in on a monitor and they would
say that she is moving enough.  When in labor I went in at 4 cm and
within 2 hours she was there.  She was never on a monitor and the nurse
never checked me until I was screaming so loud it annoyed her enough to
believe me that the pain had changed.  (The epideral never kicked in!!!)
Her apgar scores were fine and all we thought was wrong was the Cleft
lip/palate.  She was always a very cuddly baby and we used to have to
bounce the heck out of her a lot.  We just thought she liked that and it
was no big deal.  Now we realize that she has some sort of sensory issue
that she needs the movement.  Her legs and arms were always a little
stiff and the Dr would ask us at each check-up, but you know how they
are when kids are young they don't want to jump to conclusions, besides
we had a lot of other problems to deal with besides the not sitting,
rolling over, or babbling (surgeries and infections).  For a while every
time we went to a new Dr they told us a new problem with her, it got to
the point that we all dreaded the visits.  The funny part is that when
the Dr.s finally realized that she was becoming too far delayed, it took
a Med Student at the hospital to get us in touch with Early
Intervention.  We had no idea that they were there to help.  Now I have
to say that they are the most wonderful people in the world!!!  She is
getting better with the sitting - as long as to keep her entertained and
balanced she will sit on the floor in front of you for a good couple of
minutes before she straightens out and arches her back.  We have been
told that it is her hamstrings that are tight, but they have gotten
better since the beginning of therapy.  No one can give us any idea of
what she will be like later in life, physically or mentally, but she is
so happy that it just makes everything else disappear!! Here is the page
the PT gave us - I guess this is a new way of categorizing CP - Thanks -
Amy

"Extrapyramidal (Choreo-athetoid) Cerebral Palsy.  Roughly one quarter
of children with CP have this type.  It is caused by damage to the
cerebellum or basal ganglia.  These areas of the brain normally process
the signals from the motor cortex, enabling smooth, coordinated
movements and maintaining posture.  Damage to these areas may cause a
child to develop involuntary, purposeless movements, especially in the
face arms and trunk.  These abnormal movements often interfere with
speaking, feeding, reaching, grasping, and other skills required
requiring coordinated movements.  For example, involuntary grimacing and
tongue thrusting may lead to swallowing problems, drooling and slurred
speech.  Children with this type of CP often have low muscle tone and
have problems maintaining posture for sitting and walking.  Parents
usually do not notice involuntary movements until after nine months of
age."





-----Original Message-----
From: Dionne Lester [mailto:[log in to unmask]]
Sent: Thursday, June 24, 2004 11:02 PM
To: [log in to unmask]
Subject: Re: New members

Dear Amy -

My name is Dionne Lester and I have a beautiful daughter who is going to
be
3 yrs old in August. She was diagnosed with diaplegic CP (lower limbs
only)
when she was 13 months old. Two months later an MRI reveled that she
also
had Agenesis of the Corpus Collosum (ACC). ACC is a rare neurological
condition in which the corpus collosum, which links the two hemispheres
of
the brain, fails to develop. The effects of the condition are variable;
ranging from normal development (where the condition may be undetected
or be
revealed incidentally after a brain injury in adults), through mild
developmental delay to severe learning difficulties, epilepsy, visual
impairment and delayed motor development. To make things even more
confusing, there are some people walking around today who are missing
their
corpus collosum and don't even know it. They have no symptoms
whatsoever.

When Danielle was 9 months olds she was not rolling over, crawling or
even
sitting up very well for long periods of time. This is when we first
became
concerned and expressed them to our pediatrician. We went to see a
specialist who told us that Danielle just had low muscle tone and she
sent
us home with a home therapy program to try for 6 weeks to see if there
were
any improvements. We did not find out the true extent of her condition
until
we saw a neurologist. We often regret the delay in getting her the
therapeutic services that she needed sooner.

Here we are a year later and believe it or not, the most common issues
associated with the ACC has not manifests itself and we find ourselves
working with her team on some of her issues related to the CP. That is
when
I decide to search the internet and found this list. I also belong to an
ACC
list serve so I was looking for a similar platform for issues related to
CP.

She was evaluated by the county Developmental Center and she scored with
the
appropriate range for her age level in the areas of cognition, receptive
and
expressive speech. She has a slight delay in her fine motor skills.
Danielle
utilizes a walker with AFOs and gets around pretty good. Just last week
she
received botox injections into her hamstrings. We are praying for the
best
results.

I am not quite sure what to expect in the long haul. Her doctors have
mentioned a tendon stretching surgery after puberty but that seems like
such
a long way off.

What is extrapyrmaidal CP?

I joined the list a couple of weeks ago also looking for other families
and
parents with children who had CP. As Kendall mentioned I believe that
most
of these subscribers are adults. I have only met two other moms on the
list.
I am going to take his advice and subscribe to the parents listing.

Feel free to email me anytime. I am always interested in talking to
other
families

Dionne Lester
Wife to Darryl  (The hardest working self-employed man that I know who
does
it with a smile)
Mom to Danielle (2+ yrs old with the cutest little dimple you've ever
seen)
Raleigh, NC

----- Original Message -----
From: "Amy Frick" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Thursday, June 24, 2004 2:11 PM
Subject: New members


> Hi my name is Amy and I have a 15 month old daughter, Alex, with
> extrapyramidal Cerebral Palsy, Cleft lip/Palate (repaired), Strabismis
> (repaired), Optic Nerve Hypoplasia and slight hydrocephalous (no
shunt,
> so far).  We have been in early intervention since January and now
have
> begun private PT, OT, Speech (for feeding) and Hydro therapies.  We
are
> currently battling her weight =96 (18 lb 4 oz) which has been under
the
> chart since she was 7 months old.  Her height is in the 30th
percentile
> and her head is up in the 90th.  She was on Isomil with Polycose added
> for several months and since April Pediasure with a thickener (due to
> her aspirating food and tongue thrusting =96 which is getting better).
=
> I
> feel horrible every month when I take her in for a weight check =96
The
> nurse always looks at me like I am not feeding my child.  Some months
> she only gains =BD a pound and some months just nothing, I guess at =
> least
> she has never lost weight in a month which is good.  It has been a
> battle to get her to eat.  If there is any sort of noise she stops =96
=
> if
> she doesn=92t get enough movement before the feeding (she likes to =
> bounce)
> she can=92t control her body in order to sit still for the bottle or =
> even
> spoon time.  She eats 20-25 ounces a day and maybe 2 jars of stage 1
or
> 2 foods, I know it isn=92t enough for her age, but we cannot find a
way
> for her to eat more.  If I give her more jar food than she skips a
> bottle, which is really bad, since she looses all of those calories.
=20
> Just for a little history on her =96=20
> 03/26/03 =96 Born one week early =96 no huge complications during =
> pregnancy
> or delivery =96=20
> 6 # 4 oz =96 (10%) - 19 1/2 in =96 (50%) - 33.6 cm =96 (25%)
> 07/23/03 - Cleft lip repair and ear tubes at 4 months=20
> 11/03/03 - Outpatient MRI under general anesthesia (due to congestion)
> for poor eyesight and Strabismis
> 11/11/03 - Chronic Otitis Media (ear infections) to receive PICC Line
> (IV antibiotics) under general anesthesia
> 12/26/03 - Cleft palate repair, fix tongue tie and ear tube
replacement
> 01/09/04 - PICC Line taken out =96 ear infections gone (yeah)
> 01/27/04 - CT Scan of head =96 due to extra fluid found on MRI
> 04/06/04 - Strabismus repair (great success =96 she can see much
better
> now)
> 05/27/04 - Video Swallow Study at Children's Radiology =96 showed
> aspiration of fluids
> =20
> The best part of her and all of this is that she is a VERY happy
little
> girl.  Every time we go to a new doctor she smiles through it all,
they
> have all been so amazed at her social development.  Her physical
> development is at the 5 month level, but believe me she is trying her
> little heart to control her muscles enough to do some stuff.  Thank
God
> for Early Intervention and all of the therapists out there =96 If I =
> didn=92t
> have them than I would have no idea what to do!!!!
> =20
> I am sorry if I am running-on, but I don=92t really have anyone to
talk =
> to
> regarding all of this.  That is why I searched for this site.  I
thought
> I might be able to help someone else or get some help =96 I am new at
=
> this
> =96 when I grew up I didn=92t know very many people who had children =
> with
> disabilities, let alone this many in one child.  Thanks for reading my
> e-mail =96 if anyone has ideas or just wants to talk =96 please write
me
> back!!  Thanks - Amy
>

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