[tri-med] Well...we finally have some answers

Hi All :o)
Well?we took Devon to Dr. Blumenfeld on Thursday?and we got some
answers?some good?some not so good. The really great part is that Devon was
tested for the first time for glaucoma (common with Trisomy 13)?and his
pressures are normal :o) If you?d have told me Devon would let ANYONE take a
big fat pen lookin? thing with a little rubber on the end and push it
repeatedly onto the surface of his eyeball 5 or 6 times each?I?d have told
you you were on drugs!!! But he did and we didn?t even have to put him in a
head and body lock!!! Thank God for iPods!!! Today was Devon?s new iPod
Shuffle?s debut and it DID help keep him much happier while at the doctors
;o) Nothin? like a little Sean Paul, Black Eyed Peas, Disturbed, Green Jelly
and Guns-n-Roses with a little Bear in the Big Blue House and hand clapping
songs tossed in to the mix to make him get jiggy with it :o) The not so good
part is that his cataract is worse (the one in the rt eye is not a concern
so much because that eye does not function well at all anyway). It could be
operated on if it becomes a necessity?but the big concern is that since
there will be an incision in his eye (mind you it?s his only good eye)?and
if he messes with his eye the first week after surgery?like he does all the
time?he could do permanent damage and lose his vision irreparably. Of
course?he could leave it alone because he?ll know that it will hurt?.he?s
pretty smart that way. We are going to be using Cyclogel to dilate his pupil
twice a day. Dr. Blumenfeld says that his cataract is right under his
abnormally placed pupil and the cloudiness has increased a little. Using the
drops will let more light in around the cataract and should help somewhat.
Interestingly enough?we have been told at every other appointment (with the
butthead guy before Dr. Blumenfeld), that nothing had changed. Obviously, he
was wrong :o(  Of course Devon is not the most cooperative young man so he
didn?t make it easy. The thing is?while he DID have his moments of
frustration, anger and temper with Dr. Blumenfeld?Devon was VERY cooperative
for him?we didn?t have to put him in a head lock even one time!! Dr.
Blumenfeld was able to do a very good exam. The worrisome things are that
the doctor said that Devon?s pupils were not reacting as well as he
remembers them reacting before. He said it?s also possible that perhaps his
retina is just not functioning as it should anymore?? There is a test that
he could have done at Bascom in Miami?however?since his retina is not normal
in the first place the test results would come back abnormal no matter what.


 

Devon is also on a very good Lutein/Zeaxinthan supplement that should help
as well as all the high Lutein content fruits and veggies we can stuff him
with. Devon is now also off the Strattera  since June 20th I believe,
because it?s more than possible that it has caused part of the vision loss.
The Strattera is still working it?s way out of his body as we think he?s
most likely a slow metabolizer which would mean that instead of the
Strattera having a 5 hour half life it would have a 50 hour half
life?meaning when he had his does every morning, he was only at half peak
for the dose before. Figure it exponentially and well?it could take a few
months or so to be completely out of his system since it?s stored in the
liver/plasma :o( Dr. Cantrell mentioned that the medication may have caused
Devon to lose the pigmentation from his Macula and that the intermittent
improvements we?ve see could be the rods and cones starting to work again???
I?m not sure whether that could still be part of the problem or not??? Dr.
Cantrell?what do YOU think?? It?s also possible that Devon has a Pterygium
which is a slight thickening of the sclera between the iris and the nose
caused by the eye getting dried out from sun, incomplete blink or in Devon?s
case?sleeping with his eye partially open. It?s characterized by
bloodshottedness (my new word) in that white sclera part of his eyeball
between the iris and his nose?which Devon has. The doctor is unsure if he
actually has a Pterygium?but IF he does it can be more easily removed than a
cataract if it moves over his cornea down the road. We now lubricate his
eyes every night. The doctor wants him back in 3 months and he will be
monitored closely. He has good days and not so good days?his vision
fluctuates. We?re actually pretty hopeful that it will continue to
improve?albeit slowly?as it HAS improved a little since the middle of June.
I have very high hopes for the supplements to help him! Dr. Blumenfeld
didn?t really have much to comment on the Lutein although his office has
samples of Bausch and Lomb Lutein supplements in the waiting room to give
away?so I don?t really get why he wouldn?t say anything one way or the other
about it?? He said that he could do surgery to remove the cataract but he?s
concerned that Devon would push on his eyeball or poke it the first week
after surgery and obviously that could be disasterous :o(
Soooooooooo?Thursday night around 2 AM I woke up with this continuous loop
going through my head brainstorming ways to keeps his hands out of his eyes.
At first I thought about a hard patch?and dismissed that idea because he
would be completely blind if we covered that eye...plus there?s the fact
that he has NEVER tolerated ANYTHING on his head or face! Small detail that
one :o( Then I thought we could make it a clear hard plastic patch and drill
holes in it??? But then of course short of bolting it to his head there?s no
way I can think of to make it stay on :o( Now folks?keep in mind it was
around 3 AM around this time and in the light of day most of my night time
ideas seem pretty ridiculous :o( After dismissing those ideas it occurred to
me that we need to limit his elbows so he can?t reach his eyes. I thought
ok?maybe we could get a couple of those soft elbow pads, and maybe a PVC
elbow joint and 2 short lengths of pipe (one for each side of his
elbow?roomy enough to not hurt his arm of course). I thought after getting
everything the right lengths we could then seal the fittings together (not
while it?s on Devon mind you) and cut the new gizmo long ways so that we
could first put the elbow pads on and the take the split PVC gizmo and fit
the 2 long halves together around his arms/elbows. Next we?d probably have
to use some self grabbing ace bandage to hold it in place??? 

 

At this point I gave up staying in bed and decided that maybe we?d just have
to club him over the head to keep him knocked out until his eye heals??
NAH?most people frown on that sort of thing :o( RATS! 

 

However?in the bright light of day I thought about all the different braces
and splints available and decided to look into that. I started when I went
to Ritter?s to fill Devon?s new prescription. Ken (our pharmacist) and I
went through what he had on his shelves and we got a few ideas?dismissed
others and ended up looking in catalogues. There are a couple possibilities
in there and he told me to take the catalogue home and call the company
because they?ve been known to get creative with creating special things when
needed. HMMMMPPH! I bet they never thought of my PVC brace!!!! When I took
the catalogue to the car I decided to walk across the parking lot to Orange
Belt Pharmacy and see what goodies they had. And BY JOVE I think I?ve got
it!!!! There is a DonJoy Comfort Form Wrist immobilizer that I really think
would work and still be comfy. I just gotta get 2 XLG ones and give them a
trial run to see if our Houdini/Devon can get out of them. He?s pretty
determined when he wants out of something :o) Just for a couple
examples?when we used a Tumble Forms Feeder seat with him when he was
younger?he would try to get up out of it. Keep in mind it has a harness and
the seat part is velcroed onto the curved base. He couldn?t actually get out
of the harness but he ended up prying himself off the base and then would
walk over to us all hunched over like some deranged turtle with a weirdo
shell on it?s back :o) It was really funny looking and he knew it :o) He has
also busted out of a papoose board before with those 1 ½ foot wide strips of
Xtreme Velcro?the boy is a mini me HULK!!!!

 

I have even wondered if they could cast his elbows and 3? on either side at
a slightly bent angle so maybe he could feed himself still and do other
things so he wouldn?t go completely bonkers??? Does anyone think they could
do that??? AND still wondering if a mild sedative just for the time that we
need to keep his hands out of his eyes might help??? I can?t help
remembering the loopy/dreamy smile he used to get in pre op before surgery
when we gave him the Versed?kinda made me wish I could have some :o)

 

I figure we?ve got 3 months until his next appointment to find a
solution?any suggestions would be greatly appreciated :o) This way?when we
go back to Dr. Blumenfeld, we would be able to tell him we found a way to
keep Devon?s hands out of his eyes so he could remove the cataract :o)
That?s the plan anyway :o) 

Funny really?we?ve always said we didn?t want to do cataract surgery unless
it meant the difference between Devon being blind or retaining what vision
he has. I?ve known of too many trisomy kids who?ve had cataract surgery and
ended up worse off after the surgery because of scar tissue?at least it sure
seems like it??? But now that it?s us/Devon?and watching him walk into walls
and the front of the house or feeling his way to me on the couch with a big
grin on his face or missing his bowl with the spoon?well?now it seems like
the cataract surgery is the lesser evil?and it scares the *^%@ out of me!!!
Is it unrealistic to hope that just the supplements will make the cataract
go away??? I guess it is :o( I don?t really think there?s anything that
could make the cataract go away completely except surgery is there??? 

 

Love,

Penny...loving & devoted wife to Joe, the best husband in the world...mom to
Nick (16 yrs old...lover of Fishing, Dragons, Turtles, Blue Collar Comedy
Tour, RollerCoasters, Chocolate Icecream w/ Ovaltine sprinkles, Devon (12
yrs...lover of Barney, Blue, Nappy ol' Bear w/dreadlocks, Elmo, & food in
general. Full trisomy 13 w/balanced translocation 5 and 13) , and Trooper
the Wonder Dog...our 10? year old yellow lab adopted from FL Lab Rescue
12/13/02 :o) Please visit the webpage my wonderful friend Karen made for me
on our trisomy listserv at:

 <http://www.trisomyonline.org/victor.html>
http://www.trisomyonline.org/victor.html      

AND...see our Trooper on FL Lab Rescue's website at:

 <http://www.labradorrescue.net/success/index.html>
http://www.labradorrescue.net/success/index.html (Look for the name
Trooper...page 4 or 5 right now) AND :o)
<http://livingwithtrisomy13.org/album9.htm>
http://livingwithtrisomy13.org/album9.htm

AND  <http://web.coehs.siu.edu/Grants/TRIS/>
http://web.coehs.siu.edu/Grants/TRIS/

"Faith sees the invisible, believes the incredible & receives the
impossible"

 


                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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