[tri-med] Quick Aussie Alex Update

Sorry to have been in major lurk yet again, hopefully I will be back this
week.

Alex finally seems to have regained everything from the major crash the
other week. He is at least talking again (he reverted to signing, his
"first" language) We still have some memory holes but they are coming back.

To those folk whose children also suffer from the temperature drops, even
though I know Alex suffers them worse than most, please don't ignore them.
Because Alex is doing so well, its easier to see the effect that even the
smaller drops have on his functioning, and in particular his memory. And
having spoken now to a number of adults who suffer the same I am assuming
that this is an across the board symptom. And from where I sit I can
honestly say that its frustrating for me and really slows down Alex's day to
day progress.

We have had a week of appointments, which as usual means frustration time,
only two left to go to next week for now :-) (audiology and the great FM
debate plus his abdo ultrasound - nice and routine on that one I hope)

Lets see - opthamology. Alex has one body system that works BRILLIANTLY. His
eyes are as close to perfect as we can get!!! He is a little long sighted
but nothing that is interfering with anything (he makes errors in the last
line of the chart). His near sighted vision is so good that he can read
easily the last lines on the chart (mum on the other hand needs to get her
glasses out to see about 10 lines up :-)). Even while under the influence of
atropine he can still read the smallest stuff - something that amazed even
the opthamologist. As he said the muscle control of his eyes is nothing
short of amazing.

No sign of the nystagmus when we went - so it must be neurological. His
optic nerve looks great, but he still checked the pressure in his eyes and
its well within normal limits - so we can forget that as a worry at this
point. Alex definitely didn't like that test!!

His contrast vision is still down, but its not any worse than a few years
ago. So it looks like we pulled the neuroleptics in time to prevent further
damage but not soon enough to prevent some permanent damage. (Alex was on a
neuroleptic that caused some vision issues, specifically the ability to see
contrast eg grey writing on white paper, shades of colours etc. We pulled
that particular medicine and he got some of his contrast vision back but not
all)

So that was that appointment. Took three hours to get all the information,
mainly waiting for the various drops to work. But Stephen is just brilliant
at what he does so I would wait all day for him. When Alex had his surgery
earlier this year Stephen was in the theatres operating on someone else but
still popped by and said hi to Alex even though he hadn't seen him as a
patient for 2 or 3 years. My kind of doctor :-)

Cardiology - still some worrying events from his pacemaker download, but not
as many as previously. Unfortunately it didn't capture and keep data from
the event I was worried about (just my luck) - but there WAS a major event
for the day, time and time frame - still debating whether to go back and see
the cardiologist and express my concerns with him. The cardiologist on call
for the clinic was Dr Cooper and there is no way that I would ask him for an
opinion on Alex again. He admitted to my face that he would never do heart
surgery on a child with T-18, that it had never been done in this country
(true at that point) and he would not set a precedent. When Alex did have
the cardiac surgery he was so scathing and rude about the kids with
chromosome issues when he was there (there was a young girl there with T-21
as well) that I was tempted to report him. We see Gary or Graham and thats
it. Both are honest about the pro's and con's to all our families (many
families travel from interstate just to see them for a second opinion)and
even answered me honestly when I asked what they would do if Alex were their
child. (Asked because it was experimental, with no guarantees - they both
said they would do it)

On the plus side we still have over 4 years left with battery - so we aren't
looking at that surgery until Alex is in high school :-))

Developmental Ped - just a quick pop by and say hello. She did note the
deterioration in Alex's speech but otherwise was pleased. I think she was
also pleased that Alex wasn't on a high and so didn't protest too much when
I said no to playing with the toys in her office.

Neurologist - after all the hype and hope that this new neurologist would be
able to shed some light - it was a TOTAL AND EXPENSIVE WASTE OF TIME. The
only positive thing was he gave me Alex's scans to bring home (something
that I hadn't been able to get my hands on via the "regular" channels -
always "missing" when I requested copies grrrrrrr) and his praise for my
"file" on Alex and I didn't need to spend $200 for that thank you very much.
So we are back to square one on that one. I will give Prof one more shot at
this I think - but I will also start writing to Dr Axelrod again and start
considering seriously planning another trip to the US to meet up with her.
(NY here we come??) If we do I will also work it in to see Mike in Salt Lake
City re Alex's hearing. Wish I was going to conference this year (boo hoo)
If anyone has concerns re their triers hearing see Mike while you are at
conference - he's tops and is the only one who has consistently seen large
numbers of triers and followed their hearing over the years. Apart from that
he's just a nice guy!!

So that is that for the Alex update I think.

Unresolved issues still - big one is still this "muddled head" and we NEED
that MRI. Have decided that we WILL get it and have put in a call to the
Health Care Complaints Commission to speak with a PSO - no matter what
excuse they try, waiting list or the T-18 they will be able to get that
quashed. Mark (the PSO) is an OK guy. I am also going to make a formal
complaint (with the HCCC not the hospital - hospital complaints are a JOKE
as I found out with my complaint over their g-tube protocol - they STILL use
latex catheters) over past issues, including the medical meeting the other
week. Just need to warn Alex's ped that I am going to do it, because they
are going to know where I found out about it and they aren't going to like
having to do another formal investigation on a T-18 related issue. I think
amongst all the families I work with we have averaged one formal enquiry a
year for the past few years with this particular hospital. More if you
include regional hospitals - the HCCC and the health department will get the
message eventually. Can't wait for the changes to the anti-discrimination
laws (my promise from the law reform commission - and thanks to EVERYONE who
helped with the submission - its coming, its coming)

Alex is still growing way too tall (just shy of 5 feet), but not his feet!!
His feet haven't grown any in 18 months. Still eating me out of house and
home which always brings a smile to my face given that he was g-tube
dependent for so long. Still hates trying new things :-( but did at least
try chocolate icecream from a shop demonstrator during the week. He WILL try
food from shop demonstrators, which is a pain, because I have to be so
careful with them because of his allergies. Can just envisage Alex going
into anaphylaxis in the middle of a supermarket - NOT.

Still the great Pokemon lover, has almost finished Pokemon Ruby, only one
more badge to get :-)) Also rapt in Bey Blades and Harry Potter. We have
just finished reading BFG together and now he wants the
videos.................. Waiting patiently for a new dog (3 months at least
for them to train a new one). I am also contemplating a bit of PR and T-18
publicity regarding Jas by submitting the story of Jas and Alex to one of
our magazines. The Guide Dog Association are keen (more donations for them
:-))

With regards to Jas - I was doing a lot better this week - until I got the
most beautiful sympathy card from our Vet and his nurse Caroline. Undid me
totally...............

Did I say this was going to be a quick update? - OK - me going, have to work
today anyway (despite my promises NOT to work weekends anymore I need to
catch up from our week of appointments....)

"Love's the only house big enough for all the pain in the world"
Martina McBride

Keep Looking For Rainbows!!
Karen, Mum to Alex (8 years, T-18 Mosaic)

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

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