preemie-l Pain/Touch/Massage/Tactile Defensiveness
DUNN Family (nightowl@centuryinter.net)
Sun, 16 Jun 1996 22:47:32 -0400
WOW! I gotta try to not get behind in my preemie mail!!! There's so many
interesting posts lately...
The subject line will clue you in to this one, but as I read each post I
wanted to say so much to you, then I read the next and the next and even tho
you each write something a bit different...I sit here thinking "that's just
like Becca, that's just like Mack, that's just like Jessi, that's like CJ,
Bryana did that, oh and Allyssa is just like this one!!!! Gosh...they
weren't all preemie and no one spent time in a level III NICU with dozens of
tubes and repeated pokes, etc. The surviving quads were in level II for a
few days...but nothing really invasive was needed. So I never connected
their assorted sensitivities to that sort of care.
Bryana was my first survivor, my first take home baby...but she had some
problems getting born relative to losing her twin sister four months
earlier. Due to those problems she required a spinal tap right after
birth...w/out anes.! Later she needed a monitor at home for A's & B's (not
your typical story...her worst episode was just days after turning one
year!) and she hated the sticky electrode tabs, didn't like the belt too
much either. She has always disliked lots of close touching. We just
somehow learned to go slow with her until it was accepted. She was born at
36 weeks, her sister at 17 weeks. She isn't bothered by touch much anymore
but she is still very sensitive to pain.
CJ was born at 42 weeks, very post-mature, but able to be released home
after 20 hours. CJ did very well...normal, cuddly (very very cuddly) baby
who came upon all milestones right on time until she was 12 months old. She
became very ill (respiratory-poss. viral; RSV??) a few days after her first
birthday and inspite of all efforts she didn't begin to get well until we
changed doctors and course of treatments...three months later. She
regressed to a 6 mo dev level by the time she was well (age 18 mo). She was
still a cuddly baby but couldn't do anything, even holding her head! (She's
now doing very well with most skills near age level) Years down the
road...we came to realize she has lost a good deal of her perception of
pain. Lost might not be the most accurate description: some areas are very
easily pained...others can be seriously hurt and she has no reaction. Again
we learned to adapt to her situation.
Allyssa was born at 41 weeks...all things considered (cerclage, bedrest,
brethine, pre-term contrx...about like the others) she was very
healthy...usual course, milestones, etc. but she has always been highly
reactive to anything she doesn't initiate. Immunizations make her
hysterical...even now! Skinned knees are a disaster! Anything lost and
she's a basket case! She hates snug waistbands but doesn't mind tags in the
back of her shirts...can't stand for socks to be on 'wrong' (seams must be
just so) but loves to go barefoot all the time on all surfaces! Needle
sticks, skinned knees/elbows etc, cuts, bruises...all this sends her
wailing...you can now imagine what she was like recently (the reason I got
behind my email actually) when she fell the full length (2nd floor to 1st)
of the stairs and twisted her back and broke her arm/wrist in four places (
I was actually hoping the ER doc would sedate her...instead he brought out
his Donald Duck imitation) ;-) Go figure! She's my healthiest kid (tho
lately she's very accident prone)!
The last three...well they came at 33 weeks (as four, one died in-utero) and
you would expect problems with 4 pound preemies...all sorts actually...yet,
we had relatively few and they came home w/me two weeks later (we all stayed
b/c of *my* post-op inf and broken ribs!) very healthy. Our one concern was
Rebecca who still hadn't caught on to sucking well enough. They didn't seem
really preemie...we'd been cautioned about the jitteriness in preemies,
their dislike for loud noises, sudden changes, and even about holding them
too much...too much stimulation might cause problems. NONE of that was a
problem *until* they came down with RSV and had to go back in the
hospital...in and out until the dx was finally made...one stopped breathing,
then another, between them all we had two full arrests requiring the whole
team on their floor to revive them, several A's & B's (not countable) 3
needing O-2, 1 on ribavirin (the only one w/pos test), all with IV's (for
each stay--5 visits in 6 weeks--inpatient), and constant needle sticks in
heals and fingers for various reasons...the docs even debated sending one or
two of them to PICU (it was full of RSV just then...1 bed left)...our ped
even said they should be all be in ICU if there were enough beds! For all
the treatments and tests they needed then, they might as well have been in
ICU...even had round the clock nurses for the times when they were really bad.
When they came home, when they were finally well: Mack was hypersensitive to
all touch, even his sisters' and was startled by all sorts of odd sounds.
Becca was also very sensitive to touch, startled at odd sounds, and was also
sensitive to textures over her whole body (cotton knit & flannel were all
she'd tolerate). The one good thing to come out of this for her was a nurse
taking the time to find her favorite nipple which helped to increase her
sucking! Jessica had also developed the same sensitvities as Becca.
They are 4.5 yrs now...Mack has problems still with certain sounds, and
touch is something to be careful about (no surprises) but it's not a problem
with him or us. But pain for him now is strange, the littlest things hurt
terribly, yet something you'd expect to hurt a lot doesn't. Becca & Jessi
are now labled "tactile defensive" and are in therapy to help them get used
to new textures...this is an oral problem as well. They have always needed
anything new introduced very, very slowly...months later they may finally
tolerate it and later still they might fully accept it. There is still so
much they can't tolerate. Noises fit into this as well in some way...things
can be too loud, they can be too soft, or they can be too disturbing...all
this isn't what the rest of us are hearing at the time. They have had
hearing tests...all along...the latest show them to have excellent hearing.
As a sidepoint...Beth will remember this...Becca & Jessi also have periods
where they hear "bees" in their ears (heads) for no apparent reason. Becca
has this almost constantly, Jessi is affected interrmittantly. For Becca &
Jessi, pain seems to have a normal perspective.
I know this is long...if I ever have a short post it will go down in
history! ;-)
One of the things we have always done with our kids is massage...when the
kids are very sensitive it takes on a new challenge, finding the right means
to do the massage for one. One child might love just a bit of baby
powder/cornstarch between your skin and hers while another prefers lotion
(maybe even one brand over another--the smell or texture could be at issue
here) and yet another child likes it with oil...baby oil was all I tried.
Once that is discovered, you move on to the methods...which varied with each
baby's mood, and overall health at the time. But the constant in all this
was that no matter what, it always calmed them down...if it was done at a
time when they were on a pulsox we always saw an increase in sats. While in
the hospital, nurses would come in while I was doing it...just to watch the
effects take place...and maybe learn how to use it with other patients. I
always told them they should teach the moms/dads to do this bacause the
effect is so much more when parents are doing it. Each baby (this is a real
kick to see in three the same age) would have clear preferences about the
method used and would even get upset if that person changed anything. It
was interesting to note that they could tell the difference between one
person (mom) doing it and another (dad) or (nurse)doing it even when they
didn't see who was doing it. Whether or not it had anything to do with
helping their tactile defensiveness I haven't any idea...I just know with
the t-d kids they noticed *every*minute* detail and reacted negatively to
any change once they found what they liked. And they were very used to
having it at the same times/places etc...don't change the routine or they'd
let you know IT!!
I don't have any questions for any of you...and I don't write this as advice
either. I just thought if you heard what we've been thru there might be
something you can use for your own. If anyone has any questions just ask! :)
Andee: MOM to six: 5 girls, 1 boy; 1 twin, 3 quads, 2 singles; Disorders -
Past &/or Present as follows: 6 speech; 6 asthma; 6 vision; 4 DD; 4
Seizures; 4 A-B monitors for assorted breathing disorders; 3 Hypotonia; 3
Gifted; 3 Hearing Loss; 3 VSD; 2 Tactile Defensive; am I forgetting
something? :) and I have to try to keep this straight for all their
teachers and therapists??? No Wonder we decided to homeschool! :) Looking
forward to a lower stress level this summer! :)
(oh, and four were preemies!)
TTYS
Andee
btw...glad your here Beth (PEDSPT) I'm enjoying a new perspective to your
job and loving your posts here! :)
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Andee MOST-MOM | Miracle Kids: Bryana-13, CJ-10, Allyssa-7, & *triplets*
Shawn COMP-WIZ | Mackenzie-4, Rebecca-4, & Jessica-4 (1 boy & ID girls)
Now in Sparta WI | EMail nightowl@centuryinter.net for ALL of us! :) :)
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