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Angela Tomlinson-Teague hasn't added a story.
Our daughter Penelope has been in and out of hospitals and ER's for
quite some time now. We feel like we are lead in a circle only to end
up at our starting point. I guess it is partly because her symptoms
seem so multi-systemic that it can be hard which path to choose first.
As a gifted and talented toddler, Penelope
-started
talking and signing to get needs met at 4 months
-reading at 10
months
-by 12 months had mastered reading and speaking hundreds
of words.
-at 3 years old Penelope reads at well over a 2nd grade
level with amazing comprehension and imagination
Somewhere after she began to walk, her fast development both
physically and cognitively went from being above average to
average...to below average..to dangerous especially as far as her
weight was concerned. This all correlated with our weening her from
the breast gradually and introducing new foods.
Within a few months:
-she began showing signs of severe
gastric distress and anything she ate made her physically ill.
-She began showing signs of disconnection between the left side
of her body and her gate changed.
-she began limping as well as
severe toe walking.
-We have also seen signs that she is
experiencing numbness or tingling in her extremities.
-Her
balance is dangerously uncontrolled.
She can go from being high functioning to almost non-functional
within a day depending on whether or not she has had solid foods.
-She will cry for hours in pain and struggle to communicate
during these "spells"
-often stuttering and slurrig
her words and pointing rather than talking in full sentences as she
can do on good days.
-She can't sleep through the night and
wakes every hour on the hour crying and confused, unable to be soothed.
The rashes that she can have during a reaction vary from eczema
to open weeping sores and it can hurt to urinate as well as pass stool
(if she isn't severely constipated which seems to happen after every reaction)
We have had issues with her stool turning black, severe
constipation leading to visible blood in the stool, her body swells
and her belly puffs out till no clothes fit her. She can gain many
pounds quickly (we realize now that it is fluid retention) and it can
take over a week for this to clear. Usually by the time it does she's
lost all the weight that she gained during the flare up and a few more
pounds.
She currently reads at over a first grade level and has
thousands of words in her vocabulary. We mastered the Dolch sight
words in only one day when she was a year old.
Our local Hospital, AI Dupont Nemours...has unsuccessfully tried
to treat her not once...not twice...but four times now . We have
finally found one doctor to follow through her medical issues but he
is as baffled by her as everyone else has been. She has a doctor now
that is dedicated to helping diagnose her but we have no answers yet.
We are left wondering where we can go now to get our baby
diagnosed. and what is worse, she is showing reaction to her medically
necessary formula since they changed processes in some of the other
formulas. Based on her reactions we fear a cross contamination is
taking place and we are now trying to buy back dated and unexpired
cans of the formula to hold her over until the FDA can get us some
answers! Regardless, we know that this formula isn't going to suffice
for her much longer and we don't know what to do.
Please take the time to contact me if you have any ideas on how
we can get her helped! She is our blessing...our light...and as a
family her medical condition is costing us more than our own health.
We are fighting to keep our house and afford her medical care!
We are fighting to stay together as a family but as you know food
permeates every fabric of American society...it is hard when your
child wants to eat something as simple as a banana and you know that
it isn't possible without adverse reactions.
Any help you can offer is greatly appreciated!
This fundraiser is set up so that we can:
*Pay for her
specialized formula at 42 dollars per can!
*Start paying medical
bills
*Give us funds to be able to travel to specialists and
hospitals out side of our insurance area.
*allow us to use
outside specialized laboratories in testing procedures
*Set up an
emergency fund to support us if we in fact end up in the hospital again.
UPDATE: November 2012
*Penelope is entirely formula fed
currently and seeing a wonderful OT and PT on a regular basis. Her
doctor has his eyes focused on a few fairly rare conditions that
affect digestion and metabolic function and in the next few weeks she
will undergo many over night stays in the hospital with testing. Her
doctor wants to rule out HFI and CSID.
We just want our child to play without issues with environmental
allergies that in turn upset her digestive process. We have noted a
reaction in her new formula and are now scrambling to get old label
cans. Since going back she is much more stable.
Penelope's formula company has changed her formula...we've
begged and gone back and forth with their legal and medical team to
try to get them to remake enough formula to get her through these
important growth years with nothing more than more red tape to go
through. We are searching for something that can sustain her because
the formula causes so many issues now :(
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