PRUNE BELLY SYNDROME
NETWORK
http://www.prunebelly.org
5th ANNUAL MEDICAL
CONVENTION
BOSTON, MASSACHUSETTS
July 27-31, 2005
Hello friends-
For anyone who is curious how this
year's 5th annual PBSN convention went
in Boston, here’s
the long detailed version……..
Wednesday, 7/27:
Everyone checked in & we had an informal “Meet & Greet”
get-together at dinnertime.
Caught up with many old friends & met a few new ones.
Four different countries were represented this year……….a family
from Mexico with a PBS child, a PBS father from Ireland, & a PBS
adult male & his girlfriend from Quebec, Canada & the rest from
all over the US.
The themes of this convention were “PBSN Goes To Beantown” & “You
are not the only one.”
Signs stating both were all over the main floor of the hotel &
shirts were given out stating both.
My
little “PBS Brother” Daniel is getting big & is as adorable as
ever.
Been pretty healthy lately, thank God.
His
parents & his sisters are
as wonderful & supportive as ever.
The family from Mexico have a 10 year old boy named Max who has
PBS.
Max is wheelchair bound & has no use of his legs & has no kidneys.
Although I was told he could speak Spanish he only made sounds (no
words) anytime I saw him.
From what I was told he was given no outlet or access to treatment
for his PBS all this time, which is why he is like he is today.
I
actually thought he was much younger than 10, to be honest!
The family speaks very little & broken English.
Luckily another couple who was there were bilingual & spent the
weekend translating all that went on for them.
They apparently received overwhelming amounts of info all week
long & now know how & where to treat him.
Max was always smiling, blowing kisses & hugging
everyone……..beautiful little boy.
Lynn’s husband Paul joined
us on Friday & upon seeing the kind of wheelchair Max was using &
how uncomfortable it was, Paul went back home to New Hampshire (90
minute drive ONE way) to bring back a wheelchair they had used for
Daniel at one point that they didn’t need anymore & was much more
suitable for Max.
They gave his family the chair on Saturday & they were beside
themselves with joy & gratitude.
Also met Jacob of Illinois, a 4 year old adorable
little boy with curly short blond hair.
He
remembered me from last year & asked if I brought my guitar.
Told him yes & he tells me he wants to play someday
too!!!! :)
I
bought him a beginner guitar book later in the week & wrote in it,
“To the world’s next rock star!” LOL!
He
became my buddy for most of the week & I spoke with his mom about
his condition.
He
constantly gets painful urinary tract infections, has to self-cathaderize
daily & has very little appetite.
His doctors can’t
understand why the UTI’s keep happening so often & aside from
giving him medication, basically told his
mom that he will “grow out of them”, but what does he do in
the meantime?
Meanwhile he’s another
happy, playful little boy despite all this & anytime we went
somewhere that weekend, he asked to sit with me on the bus (where
he’d sometimes curl up sitting next to me & fall asleep, LOL!) &
walk with me throughout the trips.
I would try my best to
encourage him to eat & drink “a little bit extra to get big &
strong” & sometimes it actually worked!
Coming home from the
final trip Saturday night, he asked me if we were going home now.
I told him no, just
going back to the hotel but were all going home the next day.
He then said “OK
because I don’t wanna leave you!”
And both of us well up
with tears in a huge long bear-hug……….killed me!!!
I’ve heard from his
mom since then that they had to rush him to the hospital as
they got home on Sunday with 103 fever & another painful UTI,
which they have given him CIPRO for.
They will very shortly
insert a feeding tube into his stomach area to ensure he is fed
properly, given his low appetite.
Caleb of Washington DC
is almost 4 now.
Back in NY 2 years ago
he was dealing with PBS, kidney dialysis, & had no use of his
legs.
Today he walks with
help of a walker, & received a donated kidney from his mother,
earlier this year, but now also deals with Cerebral Palsy.
Two female PBS
patients joined us this time, one adult & one 13 year old.
Very interesting to
hear things from their perspectives, given that 95% of PBS
patients are male.
Met several other
families & talked with them throughout the weekend about their own
personal PBS stories, all different yet stemming from the same
basics & all very gut-wrenching, some being told there was no hope
early on, etc.
The 4 board members
(President Kurt Walker, Secretary Lynn Brokus, Treasurer Chrissy
Mason & myself) met for a while that evening to go over several
aspects of the PBSN as an organization & among other things,
discussed how to get more involvement from our community.
We also changed the
Board-position terms from 2 years to 4 to better be able to carry
out all plans made.
So the next election
will be in 2008.
Thursday, 7/28:
Ed Lowe’s Long Island
Press article came out that morning & we pulled it off the
Internet to include it in our agenda for the week.
Upon my initial
reading of it I was overwhelmed with its contents (still am) & was
very grateful for this kind of exposure.
However there was one minor
misprint within it, which said that all fundraising that
I’ve been involved with raised $1600 over the last 3 years when it
is actually $16,000.
Aside from that, it is perfect &
I wrote a humbled thank you note to Ed
for his time & generosity.
http://www.longislandpress.com/?cp=154&show=article&a_id=5061
After breakfast
(complimentary & made to order courtesy of the hotel every
morning, WOO HOO!), the morning was spent as a Vendor Fair.
Several medical
companies set up display tables showcasing various products they
make that pertain to most PBS patients’ daily medical needs.
One table was set up
by a grandmother (I think her name was Joanne) of a PBS baby,
which stood out for me.
She wasn’t a company,
just someone who wants to help.
(Her grandson was also
expected not to survive birth & his family was advised to
abort….he’s 2 now…..go figure…..)
All “PBSers” at some
point wear an elastic girdle-like binder around the waist to
tighten the stomach area & keeps everything protected.
The ones I wore as a
kid were a basic rectangular shaped simple fabric with Velcro ends
to hold it together & were usually quite irritating &
uncomfortable.
Modern ones are still
the same basic fabric but are more contoured along the sides to
fit a body’s shape.
But still they are not
very comfortable.
Joanne machine-sewed a
binder for her grandson made up of soft foamy fabric, similar to
what you’d see in a Sealy-Postropedic (spelling?) Bed commercial,
& again contoured for a better shape.
Once the surrounding
shape was created, she would machine sew lines all across the
binder to give it extra-risen padding throughout it, making it
much more comfortable & still serving its purpose.
I tried one on & it
was amazing….I WISH I had this when I needed it!
Getting something like
this through normal insurance channels would cost at LEAST $80
minimum per binder.
At her table, she had
all the fabric & a tape measure & offered to measure each person
(adult or child) who needed it & only charged $40 for the cost of
the materials….all because she only wanted to help.
She got a lot of
business that day & again, brought me to tears.
After lunch, Kurt
Walker spoke to the room.
He & his wife Jen
organized this year’s event & he works as an IT person for Boston
Children’s Hospital (BCH), where he used to visit on several
occasions as a PBS patient.
Most of the speakers
were from this hospital.
He told us that the
bulk of the cost of this convention was paid for by the past
year’s benefits we held (which included giving 11 families $500
each toward their hotel room bills) & he made a point of
acknowledging me & everyone at home for our efforts.
Very uncomfortable
moment because everyone stood up & applauded.
He then spoke of his
own letter writing campaign which raised almost $5000 earlier this
year & asked for more
input from our community
as a whole from here on in.
Our new annual goal is
$25,000 to allow us to provide us the best access to help for
conventions & other things throughout the year while still having
some money left in the bank for other unexpected things that may
come up, promotion-wise, etc.
Each speaker delivered
Powerpoint presentations on each topic & our hope is to display
each of them on the PBSN website ASAP, as well as ones from
previous conventions.
The first speakers for
the convention were a PBS mother
named Mary & her 14 year old son Danny, who has PBS, from
Wisconsin.
Scoliosis & Kyphosis
are major “side-effects” to PBS & Danny had a severe case of both,
hunched back & all.
Doing the bulk of the
work himself, he created his own Powerpoint presentation
pertaining to surgery he had a few months ago where his spine was
severed & RE-attached with rods to the point where he is now in a
permanent upright position, can no longer slouch, & actually
gained 4 inches in height immediately after the surgery!
He’s a soft spoken &
shy kid, but he gave an amazing presentation & answered everyone’s
questions…..His mom & we all were very proud of him!
Next to speak were 4
young “Child Life Specialists” from BCH, 3 female & one male, all
in their 20’s.
While all the adult
talks were going on, they spent time with the kids in a separate
room.
They planned events
for the little ones & the teens, & even separated them into PBS
patients & siblings of……
They brought
anatomically correct dolls with them to help them deal with their
own medical needs on a “Sesame Street” level.
They would each get an
opportunity to “play doctor” & treat the dolls medically as they
would get treated by their own doctors, to get a better
understanding as to why certain things are necessary & hopefully
find a fun way to deal with things, even painful ones.
They were also given
projects to do, including filling a box with cutouts from
magazines.
The cutouts were
either pictures & words that they could relate to emotionally
(relating to dealing with their own PBS or their siblings’) & then
they would discuss what each thing meant.
The conversations were
staggering, according to the 4 specialists.
“These kids know more
about PBS than you THINK they do, so PLEASE don’t be afraid to
talk to them about this. Don’t dress it down or blow it off to
spare their feelings.”
One main discussion
with the kids was “What does PBS mean to you?” & the answers were
amazing on so many levels, ranging from things like “PBS means my
mom & dad taking my brother to the doctor every other day”, “PBS
means doctors telling my mom that I should’ve been aborted”, “PBS
means getting picked on at school a lot”.
But when siblings were
asked if they’d “rather not have PBS in the family, would their
lives be better?”, EVERY one said no “because our brother/sister
wouldn’t be here.”
One other doctor spoke
that day, pertaining to Bladder Function in PBS.
Kidney function is a
major side effect to PBS (was for me).
After dinner, we made
time for fun.
Kurt & Jen Walker put
together a Powerpoint Slideshow of all 4 previous conventions
(I’ve only been involved in the last 3 including this year), put
to music lasting about 20 minutes, finishing up with “Not The Only
One.”
Very emotional……..
I played a few songs live
including “Only One” which is hard to do on any given
normal day!
Forget about trying to
play it TO the people I wrote it about!
But got through it
best I could & we all had a good cry over it.
Lots of CD’s were sold
throughout the week & hopefully it will be passed on & promoted by
the community.
A few people did some
Karaoke too & fun was had by all!
Friday, 7/29:
After another
complimentary breakfast (YAY, LOL!), it was a jam-packed day…… 3
speakers while another psychosocial workshop was in progress for
the kids by a different person.
The topics touched
upon on this day were (please
forgive my memory on some of these,........getting old &
forgetful, ya know! LOL!):
Prenatal
Diagnosis & Intervention-
Given by a doctor who
was very generous, helpful, & entertaining.
There is surgery
available while still carrying a PBS child, but only in EXTREME
emergencies usually dealing with lung/breathing issues.
Anything else can wait
til after birth, no matter what level of severity.
While there are still
no definitive causes known for PBS, there are some recent & well
thought-out educated theories being discussed…..none of which are
genetic, oddly enough.
I was always led to
believe that PBS also caused kidney & urinary-related side-issues,
but it may actually be the other way around!
When ureters are
blocked for many of several reasons, it is possible that THAT is
causing the IN-ability of formation of abdominal muscles.
Of course with funding
for research into causes & treatments, better progress could
potentially come forward.
But I digress……….
Frontiers in
Kidney Development & REGENERATION-
The doctor who spoke
on this topic is hoping to do away with the need for Kidney
transplants in favor of rejuvenating EXISTING kidney tissue
through research, but admitted this is a long way away (probably
not in our lifetime).
Mostly theoretical but
good to know for down the road.
The Present &
Future of Organ Transplantation-
Presentation given by
the boss of the previous doctor who hopes he will be put of
business eventually, but in the meantime here is what is happening
currently & for the immediate future.
The remainder of the
afternoon was devoted to taking a “Duck Tour” of Boston.
We rode around in duck
shaped buses/boats (yes, both in one!), some of which were
authentic ones used in WWII I believe, which drove us through the
streets of Boston pointing out historic sites & then converted to
a boat to ride us through the river & see the town from that
perspective….very fun time!
Afterward we all had
free time to walk around the city for about 2 hours, then meet up
again to ride back to the hotel.
Once back at the
hotel, we all just unwound….some of us hanging at the bar talking
& watching TV.
Saturday, 7/30:
2 things planned for
the morning, then off to Kurt & Jen Walker’s house about 45
minutes away for a BBQ.
The morning events
were:
PBSN Open Forum:
General discussions
among the community covering several topics, including plans &
ideas for the PBSN with help from its members.
This was originally
slated for after the medical presentation, but the flight that my
doctors were taking was delayed, so we initiated the discussions
while waiting for them to arrive (& my pacing back & forth in
worry that they would get there too late in time to make any real
impact, LOL!) & continued it once they concluded.
The doctors stayed for
& even took part in the 2nd1/2 of the general
discussions after their presentation…& stayed to have lunch with
us to discuss things privately with members.
Management of
the Abdominal Wall Defect in PBS by Muscle Transplantation:
My surgeon Dr. Ralph
Ger is now retired & in his 80’s, but is renowned for developing &
performing breakthough surgical methods, mostly dealing with
muscles & unclosable wounds.
Since his retirement,
much of the work he used to do is now being done by Dr. Elliot
DuBoys of Woodbury, although HIS current main line of work is
general plastic surgery.
Both doctors spoke on
behalf on this procedure & as it turns out, Dr. DuBoys was a
resident in the hospital when he assisted Dr. Ger during MY
surgery back on August 18, 1982, which I was unaware of.
Dr. Ger’s article on my
surgery can be found here:
http://www.prunebelly.org/DrGer.html
Dr. DuBoys conducted
most of the presentation himself, although Dr. Ger DID speak at
length as well.
Dr. DuBoys started by
discussing general reasons for transplanting muscle from one part
of the body to the other, usually dealing with victims of
accidents or ulcers.
Once the discussion
turned to PBS, I was the guinea pig up on the screen!
Most of the pictures
used in their presentation can be seen in the article, but quite a
few were ones I never saw before OF ME!
They also showed a
“cough-graph”, similar to a lie detector test graph, of me
pre-surgery.
When muscles are
intact & you cough, the graph remains still because everything is
in place & still.
Without the muscles,
the graph is LITERALLY off the page because nothing is being
protected & everything shifts during the cough.
That FLOORED me, to
know that was me causing that to happen, & typical of me, I was in
tears through most of their presentation from being reminded of my
“previous life”.
The surgery basically
stems from building up my quadricep/thigh muscles, from which they
took one of the 4 in each leg & moved them up into the abdominal
area.
The 3 remaining
muscles in each leg then expand to make up the difference & there
is NO loss of leg usage at
ALL!
At the conclusion it
was a 95% correction of the abdominal area in my case & sadly, I
am the ONLY PBS person to have it done.
Others who have
considered it in the past have been advised against it for various
“risk-factors”, which these doctors say are false!
The problem is that
within the medical community there are several political & ego
issues to deal with, yet the CATCH 22 is that only after at least
a half dozen of these surgeries are done, will it only THEN be
recognized & considered worth looking into.
My doctors’ purpose
for coming to us is to try to persuade individuals to do this to
raise our numbers & chances for normalcy.
Practically anyone can
have it done, after figuring out individual insurance issues.
Several questions
were raised & asked during their presentation:
-The
mother who donated a kidney to her son Caleb, asked if she
could also donate muscle.
The answer is no, only
an identical twin can because they know that the muscle will grow
properly in size & speed.
-How early an age can
this procedure be done?
They cannot get any
definite answers from pediatric colleagues & their best educated
guess currently is around 12 or 13 years of age, because the
muscle growth won’t have far to go.
-What can be done
UNTIL the age of 12 or 13?
There are several
COSMETIC procedures that can be done that are similar to
“tummy-tucks”.
The excess skin can be
folded over like a binder to tighten the area & give you extra
protection.
The only downfall to
that is that most doctors lead you to think that’s as much as they
can do, but it DOESN’T fix the problem of lack of muscle!
The question then
becomes if someone does the cosmetic surgery at an early age, can
they still have THIS done at pre-puberty age?
The answer, which we
weren’t expecting, is YES, ABSOLUTELY!!!!
They can go back &
re-open the cosmetic procedure AND transplant the muscles.
LITERALLY at that
moment, I & the entire room gasped!!!!
NEW HOPE!!!!!!
-An adult PBS male
from Canada looked into having similar surgery done, but taking
muscle from the shoulder rather than the leg per his doctors & he
asked for Dr. Ger & DuBoys’ opinions………..”DON’T YOU DARE do that!
You will lose the use of your shoulder! You always use your legs
everyday & they build on their own. We’re very surprised someone
would offer that & we STRONGLY are opposed to it”.
-Another adult PBS
male, 31 years old & new to our community, asked whether he needed
it done…..whether it was necessary.
Dr. DuBoys asked, “Are
you limited in your daily life, medically or physically?”
”No.”
“Then I don’t
recommend you have it done…….if you had any major limitations,
especially with breathing & other body functions, then I would
suggest you have it done, BUT if you want to improve on what you
can do now, then yes I would recommend it then as well.”
(They spoke at length
privately afterward & numbers were exchanged)
-A PBS mother asked
about how conditions are after surgery…..does everything function
better?
Dr. Duboys didn’t have
an answer so I chimed in, “I can tell you YES……..you feel a
difference in that something is there that wasn’t there before but
recovery & rehab was not bad or long & breathing & other functions
became much easier & manageable!!!!”
This discussion ran at
least an hour longer than planned, but no one was in a rush to end
it until everyone was satisfied.
The doctors were VERY
generous with their time & information & I strongly feel it is THE
pivotal moment in care for anyone with PBS.
It is NOW a very
possible & doable reality for everyone after 23 years since mine.
Lots of people came to
me with optimistic questions afterwards & I even spoke with the
adult female about if she can consider this for herself.
She said that at the
moment, she can’t…….I don’t remember the term she used, but she
has a related condition where all her insides are shifted over due
to the lack of muscle keeping them in their proper place.
She has to correct
that first before anything else can happen, plus she also suffers
from severe asthma.
She also just married
& would like to have children, so there’s a lot for her to do.
After lunch, we all
bussed over to Kurt & Jen Walker’s house, about 45 minutes away,
for a relaxing low-key BBQ, complete with a balloon walk for the
kids & lots of conversation between everyone.
At one point I was
holding a little 2 year old boy named Joey.
He was hitting my face
& playing “got your nose”, etc.
He GOT it alright……his
little fingernails were quite sharp & he dug them into the right
side of my nose & I had to quickly put him down & get into the
house without causing too much ruckus & let anyone see the blood
gushing out non stop!
No damage once it
calmed down, aside from the fact that I had to wear a huge band
aid on the side of my face for the rest of the afternoon, LOL!
When Joey saw me with
it on, he got upset that he gave me a boo-boo & I talked him down.
How can ya be upset at
THAT point when he was MORE upset about it???
;-)
When we said goodbye
the next day & he saw the band aid was gone, he said, “No more boo
boo?”
”Nope, all better!”
BIG smiles then!!!!
:)
Jacob was worried too,
but was also relieved the next day.
Too much, these kids……
Back to the hotel &
again, everyone just unwound & did their own thing.
Some of us again hung
at the bar & chatted some more.
Sunday, 7/31:
Another complimentary
breakfast (LOL!) then slowly packing up & saying goodbyes.
Kurt & Jen did an
amazing job in planning this year.
Previous conventions
had a lot of info thrown at you but very little time to get to
know each other.
This year was the
perfect mix of the two.
This was definitely
the most effective & emotional convention yet & next year’s is
already being planned for California!
No definite venue yet,
but the woman planning it knows people who work for both Knots
Berry Farm & Disneyland, so those are both possibilities.
Have to figure out how
& if I can afford to go there financially.
Plus I’m not a big
traveller & luckily despite some news reports in NY AND Boston
about bomb threats in both train stations I needed to be in,
everything was uneventful to & from this time!
I haven’t flown in 30
years, so that, plus
financials, have to be
very thought out for next year.
My fellow board
members are amazing people who are completely dedicated to
reaching all goals for the PBSN.
Since the convention,
one woman wrote in to the Support Forum saying that while we were
all in Boston, her grandson was born 7/27 with PBS & died on 7/29
due to the lungs not receiving any necessary fluid.
Another woman is
carrying a PBS baby & is being given the most negative news from
her doctors & is begging for our help.
Luckily the members of the
community are amazing & beautiful people & ARE offering help in
ways such as spiritual support, doctors'
phone numbers & one even putting her & her family up at their
house if she has to travel
to get care, all in the HOPES of maybe giving this child a chance
to survive.
Many tears, but also
much inspiration from it.
THESE are the reasons
that the PBSN exists…we need help, attention, research, hope.
There’s so much more
to do.
The Support Forum has
become a private page on the site for members only for security
reasons, but membership registration is still free & we encourage
everyone to join & become active with us.
Thanks for reading &
caring.
-Frank W.
MORE ......
10/5/05 UPDATE
From Celena,
10/1/05
Hi I am in the hospital and
won't be able to get online so I thought I would share the
news with you.
Friday September 30th, my water broke at 6:30 pm.
My husband and I sped to
the hospital as the contractions were 4 minutes apart.
My doctor met me at the hospital and soon after confirming
that I was in labor gave me the epidueral and drained the
baby's abdomen.
It was almost 2 liters of
fluid backed up.
The baby's heart remained
strong and the doctor believed we could have a vaginal
delivery.
But I dilated to 5
centimeters and then could not go further.
The baby was in distress so
they had to do a C Section.
At 3 am he was born eyes
open and breathing on his own.
The NICU staff took him and then an hour later his lungs
had not grown enough to sustain life.
They brought us in to him
and encouraged us to spend time.
That little boy fought for
life from 3 am until he passed at 12:18 pm.
9 hours and 18 minutes.
His little life left all the hospital staff, neonatalgist,
etc crying and grieving with us.
He was so beautiful.
I asked them to dress him
up and let me be with him.
His grandparents came, my
sister and sister in law and best friend were all there to
hold him and look on his beauty.
My husband could not proceed with naming him George after
his father but in keeping with my son's beloved Emma child
he predicted, we named him Emmanuel.
We know that even if our
son cannot be with us God is with us.
So please tell everyone on
the site thank you for their love and support my question
has now been answered and our baby is in the arms of the
Lord.
With love,
Hope still remains!
From Gina,
10/4/05, roughly translated from Spanish:
Hello,
I communicate at two o'clock with all my sorrow
that today at 11:15 a.m. my baby died for septic shock.
The bacteria
that attacked it were stronger than his heart and since to
speak, it went away.
I am truly
sad, there is not there will be nothing that consoles me,
so although I have two more sons, my Juan Pablo the era
quite.
He was a very
brave boy who although it lived through a little time
fought against wind and tide to be alive.
I feel with
the moral duty to warn them and to give them to you thanks
for what in his moment they supported me and gave me words
of breath.
Desire of any
heart that both your son Lynn and your nephew Karla, go
out forward and have them with you as a lot of time.
Give them
greatly love and take care of them very much.
Thank you
again for everything and they I send one burn very loudly.
Affectionately,
Gina
***********************************************************************************************************
A
discussion between mothers of PBS children,
from 10/4/05:
From CM:
I don't
know where to start this post but I need to
get some things off my chest that are just
weighing so heavy I can hardly breathe some
times.
A few of
you know that in August we were told that my
8 year old son's kidney is not doing so
well.
The doctors
have started talking transplant and some
pre-testing has started.
It's a ways
off--up to a year or so--but that's still
too close for comfort for me.
My son has
started on Epogen and we have already been
able to cut down to just once a week, which
is good because he doesn't like those shots
at all.
Next week
he will start on a growth hormone which he
will administer himself.
He's not too
worried about that because he will do it
himself and he likes that idea.
My problems
come from the emotions of all of this.
None of my
family or friends know what I'm dealing
with.
I function
daily as if everything is okay but anything
can trigger me into tears.
For
instance, I can hardly read any of
the Support Forum posts on here lately.
Anything I
read about people with health issues makes
me cry and leaves me with a horrible feeling
of nausea.
I would
consider it borderline depression but I
fight it and fight it.
My faith is
as strong as ever and I know the Lord will
provide whatever I need to get through this.
But, I get
these dark thoughts and feelings that just
cripple me emotionally.
I've been
reading a lot about the Lord and praying and
I fully believe that these dark thoughts are
the devil at work but I have a hard time
with it nonetheless.
I felt a
little better last week after a time of
prayer and thought it would really make a
difference.
I prayed
for the Lord to handle the problems with my
son because I was just tired of worrying
about him.
I really
felt good about it all until Sunday.
My son had
an accident on his go-kart.
He bruised
his groin and lone testicle very bad.
He is still
in tremendous pain and very uncomfortable.
We did go
to the doctor and he said that it was just
bruised and we should be more careful of
that testicle in the future.
I was so
comfortable with my son on the go-kart
because he had finally had some energy to go
out and play which is something he doesn't
do very much lately. Basically, I wasn't
worried about him.
But, now
I'm wondering how much should I let him do.
I already
waver back and forth on this topic A LOT.
I sometimes
come across as the over-protective mom but
no one else knows what it's like to deal
with this.
I'm not
suppose to worry but then if I don't watch
it, he gets hurt or sick.
Where do I
draw the line between worry and just being
careful with him?
We have
many friends and family that have really
shown a lot of love and compassion and
prayer for my son
but I just
feel like screaming, "I don't want your
thoughts and prayers, I just want this to
all go away!"
Isn't this
horrible??!!??
Like I'm
the only one that has ever gone through
this!
Quite
selfish of me, isn't it?
I'm sure you will read this and quickly
suggest counseling for me but I just don't
know if I can do that.
I just
wanted to get this stuff off my chest.
But, I
don't know if I feel better or worse....
From LB:
I'm so
sorry you are having such a hard time!
It must be
so hard to walk that tight rope of trying to
let go and let him do things and then to try
to protect him from injury.
I know I
try to walk that line with my daughter and
do not often do a good job of it.
I think we
all have those times of feeling like we are
losing it and don't know where the line is.
(I know I do!)
I really
don't have any answers for you.
Please know
that, although I don't have any answers, I
am always here to listen and you can feel
free to spout off anytime you need to.
I wish I
had a magic wand and could take it all away
for you but I can't.
What I can
offer you is the support we all have here.
(I know
sometimes even that isn't enough!)
Thanks for
keeping us posted on how he is doing
(I'm really
glad your son decided to go ahead with the
growth hormone and is feeling more energetic
with the epogen!!)
and I will
keep you all in my prayers.
Let me know
if I can do anything else to help!
From DM:
I am So sorry for what you
are going through right now!
I think many
of us here have probably struggled with
atleast some of the same things you are
feeling!
I have gone
through some times where I have felt so
discouraged about my son's Issues ; even
recently.
I Also have a
hard time with others not understanding what
I'm going through or how hard this can be to
the point I have distanced myself from many.
I'm tired of
the "well meaning" yet hurtful comments & so
I have shied away from some who I used to
consider friends.
I know at
times i too am a little protective of my
son although I usually try & let him be as
"normal" as possible!
I am going to
Counseling For my son with a child
Psychologist at our Children's hospital & it
does help me to have someone to talk to.
It started
out being to get help with my son's
Neurological etc. issues but it has turned
out to be good for me to have someone to
Talk it all through with!
She works
with many Children & families of kids with
Medical/Neurological & Behavioral problems!
It is
something to consider.
I have also
started going through some of my "Topic"
scripture books & trying to "build me self
up"/make myself feel better by reading
Encouraging Scriptures!
Take Care
friend...I Love You...and I Care!
P.S. I WILL
be Thinking of You and Praying for
you...whether you want it or
not~grin~because I am your friend!
From JK:
There is not
a day of my life since I first heard the
word Prune Belly that I have not felt
exactly the way you describe.
You don't
need a shrink--you are just being truthful!
I appreciate
your honesty in having the courage to just
admit it....
sometimes I
think we mask a lot of hurt and pain under
layers of coping mechanisms...
whether it be
our "faith" or whatever else we use to
cope....
I know God
and I have had many a long discussion
(usually one-sided--mine) on these very same
issues....
I always said
I sure hope there is a heaven, cause I want
to make an appointment to have a face to
face discussion with Him!!
I think
everything you have brought up is entirely
understandable.
The bible is
full of stories of good people who try to
grapple with God when they are beset by what
are honestly UNFAIR life circumstances.
(The book of
Job comes to mind!)
I think there
is no deeper hurt than that of watching your
child suffer in any way whatsoever.
If you ever
need to talk, rant, vent, or
philosophize...please call/ email me.
I never
judge...and am quite sure I have felt (at
one time or another) 99% of the gamut of
emotions that you are experiencing (and then
some, as I age).
Dealing with
PBS IS a life-long & life-altering
experience...no matter which way the
pendulum swings with the outcome!
Anyone who
does not think so is just kidding
themselves.
I know
EXACTLY how you feel...and I also have
distanced myself from some very well meaning
& well intentioned friends
(I call them
the "normies" for "normal people")
over the
years, because I know, quite frankly, they
haven't a CLUE...
and they
don't know what it is like until they have
walked a mile in the shoes of a PBS parent.
I know many
times we masquerade our hurt with a veneer
of faith, or positivity, but a lot of times
that just doesn't cut it for me either....
altho I do
feel that faith helps, and sustains us.
I get very
angry at God, and I just hope He understands
my bitterness.
I somehow
think He does.
I think of
you & your son all the time.
NONE of it is
fair, or right.
But please
know you both have my love & support 100%--
so no matter
what the mood that strikes you---
no matter if/
when when you feel your faith is failing
you...
please find
some comfort in knowing there are those of
us who understand on a level that the
so-called "normal" world cannot even begin
to fathom.
Sometimes I
think it is entirely okay just to stand back
and scream at God.
(I'll even
help you scream! )
My heart
screams, daily, at the unfairness of it ALL.
From CW:
I can't tell
you how much I feel like a related to what I
read in your post because as I was reading
it I thought of my mom.
I can't
imagine what it must of been like for my mom
to hear that during my back surgery my
kidney failed.
My only
kidney.
I didn't know
what she was like during that time because I
was unconscious for two weeks.
I just know
she probably was going through the same
things you are going through.
I'm sure all
of us have asked WHY IS THIS HAPPENING TO ME
and WHY WON'T THIS STUFF JUST GO AWAY!!!
If you want I
can give your her e-mail and she can share
her experiences and where she went for
comfort.
As always for
everyone a part of the PBSN my prayers are
with you and I hope the best for you
and your son.
From CM:
Thank you all
so much for replying;
I do feel
better knowing that my raging, waffling
emotions are "normal" for us.
I do feel
like I have to "masquerade" my true feelings
around friends and family.
I guess
because I don't want people to see how down
I can get;
most people
wouldn't understand it from me because I'm
always so upbeat and a smile on my face.
Plus, I don't
want to bring other people down with my
problems.
But,
sometimes that's a lot I have to carry on my
shoulders so it's just easier to avoid
contact with people.
Don't get me
wrong, I'm no hermit by any means but I do
get to a point where I just want to stay
home and immerse myself in my family--
maybe that's
my comfort in all of this; knowing that I
can retreat into my family and home.
I sure appreciate all of your support and
input--it means so much more coming from
people who are in the same boat.
Even though
the boat sometimes feels like a speed boat!
From MM:
I know
exactly what you're talking about.
It's that the
worry never never goes away.
You never get
a break!!
And it feels
like its your responsibility to be on top of
everything and never let your guard down,
never relax.
Never have a
moment of peace or relief.
Every little
thing our kids say or do can cause worry.
Not only the
physical but also the social-
I worry
my son will be shunned because of being
large/different, or he lacks self-confidence
because of it.
I analyze
everything he says to check if there are pbs
issues to worry about.
My son's health has been good lately but I
very very clearly remember the feeling of
24/7 vigilance.
it is
exhausting and incredibly stressful.
My life was
like that for the first 7 years of his life.
I had panic
attacks for a few years AFTER his health was
better-
I think it
was a delayed reaction, I can't really
explain it.
But I am sure
it was related to his health issues.
I know
exactly what you mean about being on the
verge of tears all the time.
And I REALLY
resented, and still resent, friends and
family with "normal' kids
who have the
nerve and cluelessness to complain to me if
their kid needs a tonsillectomy or something
like that.
I just want
to slug them.
Or when they
complain their kids don't get to play enough
in a soccer game.
I just want
to scream and say you are so spoiled!!
I think that
is normal.
I don't feel
like a bad person for feeling that way but
sometimes I feel very very alone- that
nobody else can understand what it's like.
This is probably going to annoy you, but I
really think you need to do something for
yourself.
It really
helped me to go to a therapist.
She gave me
some permission or something to take care of
my needs somewhat instead of completely
giving myself up to whatever I thought the
kids needed.
I think you
are like me in that you take on a huge
burden to make sure everyone else is happy,
but as my therapist would say--"who is
taking care of you?? "
Of course I
said I can take care of myself.
(But the fact
that I was having panic attacks and I was
sitting there in her office unable to stop
crying
when I talked
about my worries regarding my son kinda flew
in the face of that.
I was unable
to even TALK I was crying so much, when I
tried to explain to her what my son had been
through in his life and how bad I felt for
him.)
I was resistant to going to therapy because
it seemed self-indulgent but really, you
have to keep yourself together if you want
to be there for your kids.
Also there
were things I didn't want to face but it was
a very good thing that I did.
It was good
to get to the point of believing everything
was NOT my responsibility and that I can't
control everything,
and all bad
things are not my fault, and it was ok for
me to make changes in my life that I needed.
I think that you are going through some
really really difficult stuff and you need
some relief somehow.
You said that
sometimes you feel nauseous when you read
posts or think about health issues, and you
are often on the verge of tears....that is
really serious.
That is not
something to make light of.
Why do you
say you don't think you can go to
counseling?
If
your children said they had those feelings,
you'd probably do something about it-talk to
a professional about it.
But you are
just as worthy and important, and emotional
"illness"
(not mental
illness, but feeling bad for a very
legitimate reason as you are)
is just as
real and needing of treatment as physical
illness, in my opinion anyway.
I personally
don't have any religious inclinations, but I
know that helps alot of people deal with
stress and is a good thing for those who it
helps,
but maybe
help from a medical professional in addition
to that would be worthwhile.
I wish I could do something to make you feel
better!
You are fun
and funny and sweet and smart and
interesting and perceptive and just an
all-around wonderful person.
You da bomb!!
Take care of
yourself.
We are all
nuts about you!
From Frank Walker:
I'm going to
ask my mother to write in with her thoughts
on this.....
I can only say this much.
Every person
in this community born with PBS is lucky &
blessed to have the loving, caring &
supportive parents they have.
YOU have made
us who we are.
From Anna:
I saw a
psychologist who specializes in helping
parents with sick children when I was
falling apart over my daughter's constant
medical problems.
The therapist
told me I was showing symptoms of Post
Traumatic Stress Disorder
(although in
the case of us PBS parents it's probably
more like ONGOING Traumatic Stress
Disorder).
Just having a
NAME for what I was going through, a real
diagnosis, made me feel a lot better and
helped stabilize me,
and I was
able to read about the disorder and find
more help and support.
The term also
comes in handy when dealing with the
clueless friends who can't seem to grasp
what you're going through.
From AG:
Frank, what
you said brought tears to my eyes!
Thank you.
I do think us Mom's think we have to take on
the WORLD.
But in
reality we can't do it alone.
I also had
panic attacks and have been diagnosed with
anxiety disorder.
It was
exactly a year ago.
My panic
attacks also only happened when my son was
well.
I think that
is when we let our guard down and we relax,
then our body doesn't know how to relax and
it freaks out (my explanation).
We do need to
take time for ourselves and learn how to
relax and enjoy life and not worry all the
time.
I also see a
therapist.
She told me
that I need to take time to do
"unresponsible" things,
like just sit
and watch TV and not think about anything,
or read a
book, or do Yoga, or anything for yourself.
We have so
many responsibilites, even more so with our
PBS kids,
that we HAVE
to give ourselves permission to have fun and
enjoy ourselves sometimes too.
I agree that
if you don't take care of yourself, then you
won't be able to take care of your son.
Maybe if you
think of it that way it will be easier for
you to TAKE CARE OF YOURSELF!
I landed in a
hospital (due to a panic attack before it
was diagnosed) in order to figure all this
out.
Don't let
that happen to you!
These
"little" signs are for a reason.
Something is
just not right.
Go with your
gut instinct (just like if it was with your
son) and get some help.
Yes, you can
rely on God to help you through this but you
need to take initiative and get some help
that you need for God even to help you.
I agree with talking with my
friends about my son.
Most of the
time if they ask how he is doing I say just
a few things and leave it as that.
They just
don't understand.
There were a
few times friends complained about the
smallest things when taking their kids to
the Dr. and I almost blew a gasket.
I wish that's
all I had to worry about!
I feel I have
alienated myself from my friends because of
all of this.
I do see some
of them occasionally but that's it.
You guys are
my true friends because you get it.
You know
exactly how I feel and why.
You know that
we are stressed to our limits and some days
just don't know how we can make it even 1
more day.
You know
what's it's like to sit by your child in a
hospital room and hold their hand and feel
completely helpless
because you
just don't know if they are going to make
it.
You can't
make it better.
How helpless!
We've all
been there and continue to feel this way.
Your symptoms
of nausea and crying easily are signs of
anxiety/depression.
Before I was
diagnosed with panic attacks I would feel
dizzy or my arms were shaky, and once I had
vertigo where the walls of the bathroom
moved.
I was freaked
out to what was going on and sure didn't
think it was anxiety related.
I did go to a
family Dr. (who was absolutely no help),
even though I told her my entire story
about my son and that I think it had to do
with that.
They did a
gazillion tests.
I convinced
myself that I had what Micheal J. Fox had
(the name escapes me) because of my arms
being shaky.
I cried for
days and was so extremely depressed because
I just couldn't have that.
Who would
take care of my son and my family?
Finally the
test results came back proving it wasn't
that but she couldn't give me a diagnosis.
But it still
took a hospital stay, because I went to the
ER with light headedness
and a feeling
of a hot rush through my entire body and
then had an abnormal EKG, to finally
diagnose the anxiety\panic attacks.
I had an
abnormal EKG because of the stress and also
I could not do the stress test for even 5
mintues because I stressed myself out.
The night I
spent in the hospital I was convinced I had
heart problems.
All of this
are signs of anixiety/depression.
I am on
Zoloft and LOVE IT!!!
It takes the
edge off just enough for me.
My therapist
said if I can get off it in a year or 2
that's fine, but if I need it there is
NOTHING wrong with taking it.
I was bound
and determined to get off of this ASAP, but
you know what it really doesn't matter if I
ever do.
Especially
now with me being my son's kidney donor, the
stress will mount again.
If I need
this medicine to help me cope, then so be
it.
Does that
make me a bad Mom?
Absolutely
not!
It makes me
an even BETTER Mom because I know I am
taking care of myself.
I just felt I
needed to share my entire story so you could
see that you are going through the same
thing as I am.
Please know we are all here for you.
I think this
kind of support is what is THE most
important part of PBSN.
WE ARE A
FAMILY!
We love
you!!!
Take care of
yourself so you can take care of your son!
From MM:
Your story is
so similar to mine!
I ended up in
the ER one night because I thought I was
having a heart attack or something.
It happened
when my husband was out of town and I was
home alone with kids.
They did
tests that night and found my heart was
fine.
But a few
days later while driving my heart started
racing and beating erratically and I got
dizzy and so freaked out,
convinced I
was going to die, that I almost drove into
oncoming traffic.
I had to pull
over into a hotel parking lot and call my
husband to come get me because I could not
drive.
I went to a
cardiologist who put me on a heart monitor
for a while but determined there was nothing
wrong.
He never
mentioned the possibility of panic attacks.
For months it
was an ordeal to drive to work every day
because about a third of the days
I would get
lightheaded, sweaty, and just completely
panicked- racing heart, weak, shaky while
driving.
It was
terrible.
It also
happened sometimes when I was alone with the
kids.
I would freak
out about the possibility of me having a
heart attack or something
and worried
about what the kids would do if that
happened and it would just spiral into
complete panic.
Even as I was
telling myself everything was fine, my body
would still go into adrenaline overload
mode.
Then one day
I saw in the paper that it was "National
Panic Attack Awareness Day" and they were
doing free screenings at a local clinic.
I went there
and talked to a psychiatrist who, after
about 3 minutes into my story, said I
definitely was having panic attacks.
I went to a
psychiatrist who put me on Zoloft and the
attacks went away!
I took Zoloft
for about 2 years.
Now I have
been attack-free without Zoloft for at least
3 years.
I had no side
effects from the Zoloft.
I find this all so weird because when there
is actually something to panic about, I
don't.
I sat through
12 hours of my son having spinal surgery
last year (with a 10% chance of some
paralysis) cool as a cucumber,
doing
crossword puzzles and eating, no problem.
And all the
stuff he went through when he was younger-
surgeries, frantic trips to the ER, etc.--
through all
that I remained rational and never "lost"
it, although completely freaked out
inside...
From my Mom!:
This is Ann
Walker, Frank's mom.
After reading
your message, I felt I had to reply.
As everyone
else has said, we have all experienced these
feelings.
I never
thought I had the strength to handle what
Frank was going through.
I was 22
years old and never heard of prune belly.
Watching your
child battle with health problems is the
hardest thing a mother has to handle.
You seem to
have a very strong faith and that is what
you have to hold on to.
As for being an over protective mom; you
are just being a very caring mom.
Frank was not
able to do any physical activity as he was
growing up.
In second
grade, the music teacher asked if Frank
would like to take up the violin as he was
not able to play a wind instrument.
Someone asked
him to join our church folk group as a
singer.
Eventually,
he started to play the tambourine.
From there he
went on to play piano and guitar.
He had
finally found something he could do and
enjoy.
As you know,
music is his life.
Your
son doesn't have to be an athlete.
Try to
introduce him to safer activities and see
what he feels he is meant to do.
Hold on to that faith.
God is
listening.
We will keep
all of you in our prayers and I am always
here if you want to discuss this further.
From
CM:
Thank you all
again for the continued posts.
It is really
helping me see that I have to get this under
control.
I think I've
had some panic attack-like issues in the
past few weeks or so.
I won't bore
you all with the details but it's
crowd/public related, mostly at school
events with people I know!
But, I just
try to handle it and not stress out.
I think I will contact my son's doctor for
counseling referrals.
I know I need to get a handle on this or it
will just get worse as my son progresses
toward ESRD and transplant.
I know I need to make sure my son is being
all the person he can be, too.
He has been
so wonderful through all of this--still a
smile on his face and understanding it all
so well.
I talk to him
as much as he allows just to make sure he's
doing well emotionally.
The school
has been wonderful with him, too.
His Special
Ed teacher works closely with him and allows
him opportunities to work with her one and
one that really boosts his confidence.
He even helps
out his teacher from last year (5th grade)
instead of going to recess and that makes
him feel important and helpful.
Thank you all again-----
God Bless the PBSN community!
|
|
My home E-mail address is
spoonwalkcd@msn.com.
Please feel free to write
me about any of these topics & I’ll do my best to reply
ASAP.
Thanks very much-
Frank Walker
VP of
www.prunebelly.org
|
e-mail
<<>>
Frank
Walker
