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JUNE 04 |
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JANUARY 2004
I am left wondering at this point if it
WILL be a Happy New Year. I know, I
know, think positive. I am trying, but if the Dermatomyositis was the ONLY
problem, well things would be looking just ducky.
It is
this Bone “thing” that has me worried. From what I have read and
researched about these “things”, regardless of what it is, cyst or
tumor, it means surgery to correct it. I am so NOT looking forward to telling
Ian this. He has been SOOOOO strong and brave thru this whole thing. He
doesn’t complain about much, and the ones he does have are quite valid.
I am
afraid that when I tell him about another hospital stay, ALL of his bravery
will go out the window. (not that I would blame him, I
know if it were me, mine would – how I wish it WAS me and not my little
boy)
Ok
shaking it off, shaking it off, New Years around here was quiet. We all stayed
in and did whatever. We got Xmas packed away again, yahoo I have my house back.
No more tree to trip over and toys everywhere. Had the boys move all the new
toys into their room, no where to put anything yet, but at least this way 90%
of the house is back to normal and I can close the door to their room. LOL.
Dad
watched football and Mom again was scouring the internet for a new car.
Mom
headed for bed around
|
PREDNISONE |
ZANTEC |
FOLIC ACID |
METHOTREXATE |
|
|
50
mg/day/AM |
75 mg/day/AM |
1 mg M-F/AM |
12.5
mg Twice Daily Saturday
ONLY |
|
|
ADJUSTED |
MEDS |
EFFECTIVE |
1/1/2004 |
CYCLOSPORINE |
|
45
mg/day/AM |
75 mg/day/AM |
1 mg M-F/AM |
12.5
mg Twice Daily Saturday
ONLY |
Twice/daily |
We will
go down 5mg per week unless told otherwise by Dr. S, here’s crossing my
fingers for no relapse.
Things still in the normal gear for now, but
getting close to the 9th appointment for the MRI.
Mom is
still looking for her new AUTOMATIC SHIFT car. I thought I had a deal for a new
Mitsubishi, but it didn’t work out. I shopped around and then went back
to Central Mitsubishi in
Raynham. FOLKS, avoid this place at all costs. I had a great deal all set and
then the sale of my old car fell thru. Well when I went back with this
information not only did the price of the car suddenly go up $1722.00 but they
then only offered me $2000.00 for a trade in that the NADA says is worth
$3100.00 and the Sale Manager was belligerent to boot. Guess that is what
happens to females alone buying a car. (This was my deal to do, and husband was
ok with it, so I didn’t need to drag him along to the dealerships) So the
boys and I walked out on the deal and I really do need to thank the belligerent
S.@.B.
If I had
bought that car on
I have
loved the Mazda6
since I saw it Xmas of 2002 while visiting my in laws in
I do all
my pricing via the internet BEFORE I even go look at a car. That way if I do like it, I am not clueless. The
place was very short on Sales help; I did end up speaking to the Sales Manager,
since everyone else was busy. He gave me a plate and the keys and said try it,
with out so much as a copy of my license. I was
floored. I took off for ½ hour all by myself. I was on the highway and the back
roads. And folks this thing is the B*lls. I had already priced this lil baby
out and they offered me a deal for $200.00 LESS than the internet site I was
looking at. It was sold in minutes.
The kids
were a bit disappointed that I didn’t take them with me this time, but
made things soooo much easier on me without them ;).
The Boys go back to school today from their Xmas
vacation, as with most kids they would rather not. J . But the bad news is, today is the day Ian has
gym. I have already called his teacher and told him about the bone
“thing” and that there is to be no running around type of stuff,
since I am already pushing our luck by letting him ditch the crutches.
Well see how Ian feels about it when he gets home,
I could be in deep doo doo.
Nope he is ok with the no gym thing, I have put in
a call to the Pediatrician, Dr Laura since I really don’t know how we
should handle PT. and speak to her voice mail, I leave
a message that all is going well with the Dermatomyositis, but now we have the
bone “thing” to deal with. And also is there some
“other” Orthopedic person she knows of, since I didn’t
“clic” with Dr K.
Ok off to PT. I tell his therapist about the new
discovery and she adjusts accordingly, about 20 minutes after we get home from
PT the phone rings. Yep it is awesome Dr Laura. I give her the 411 on the Ortho stuff and what do I do??
She recommends another Dr. who is associated with
the same hospital but actually see patients at her office too. WOW that is a
WHOLE lot closer to home for us. She gives me his number and tells me to call
and see if we can get squeezed into his next session at her office. She tells
me he VERY friendly and will explain in detail what is going on. Now that
sounds more like it.
Well
I wait until
So at
this point there is nothing more to be done today, I will try again tomorrow to
make an appointment closer to home.
|
PREDNISONE |
ZANTEC |
FOLIC ACID |
METHOTREXATE |
|
|
45
mg/day/AM |
75 mg/day/AM |
1 mg M-F/AM |
12.5 mg
Twice Daily Saturday
ONLY |
Twice/daily |
|
ADJUSTED |
MEDS |
EFFECTIVE |
|
CYCLOSPORINE |
|
40
mg/day/AM |
75 mg/day/AM |
1 mg M-F/AM |
12.5
mg Twice Daily Saturday
ONLY |
Twice/daily |
I try again to make an appointment locally,
no luck, it’s a good thing I took the
appointment in
It’s
a typical day, Mom to work at 0330, Kids and Husband to school. But Keith meets
me at home at
Since we
are early I figure we can hop up to Rheumatology and pick up the results of the
last set of labs done on
We
always seem to have impeccable timing, we find Dr Susan at the computer
adjacent to the waiting room and she comes out to say hi when she hears me ask
for his blood work and tell them he sees her.
She
confesses that she ate MOST of the goodies that we brought in on the last
visit. Gee better her than me. I am supposed to be on a diet, and I have TONS
of cookies at my house. I call Keith over since he is the responsible party for
any weight gain. LOLOL
|
|
CPK or CK |
Aldolase |
Von Will |
LDH |
AST |
ALT |
|
10/22 |
504 |
15.3 |
221 |
527 |
58 |
25 |
|
10/25 |
130 |
15.3 |
170 |
489 |
37 |
25 |
|
11/5 |
35 |
8.3 |
261 |
322 |
22 |
19 |
|
11/26 |
23 |
6.5 |
301 |
319 |
22 |
24 |
|
12/24 |
36 |
8.1 |
241 |
290 |
19 |
20 |
|
|
4-175 |
3.0-12 |
5.0-150 |
110-295 |
2.0-4.0 |
3.0-30 |
I ask if
I can get a copy of his blood work from the last visit and she says SURE and
immediately pulls it up on the computer. We look at the results together and
she says that they are ALL looking good except one. The von
Willdebrand. And that one is not to far off. (see
the above chart) This is WONDERFUL news, now just crossing my fingers that they
STAY down now that we are backing off the Prednisone.
We chit
chat a bit and Mom makes the mistake of mentioning the EMLA (which means
needle) and Ian starts to get the quivery lower lip. Dr Susan takes it from
there and tells him how brave she thinks he is and how much SHE as a big person
didn’t like having her blood drawn the other day, but Ian must be such a
champ at it. She then gives him a big hug. (man has he
got it figured out on how to get the attention of pretty women ;) we give him
the business about this in the elevator LOL)
Just
want to say THANK YOU Dr
Susan, for always taking time for us, when ever we just show up.
We use
the Fegan6 waiting area to put on the EMLA and then head down to the 2nd
floor and radiology.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Ok
it’s off to MRI now and we arrive at the waiting area around
Sometimes
I would wish they would remember that we all don’t KNOW ALL the
rules. I really don’t WANT to know all the rules. I wish I didn’t
even have to go there with my son. But I do - so I will, But
can you clerks remember that we parents are not usually functioning at top
efficiency if we are there with our kids. We are worried, We are stressed, We are tense and so way not sure of who to see or where
to push the paperwork.
Within a few minutes Ian is taken in. Dad goes
with him this time. Mom just can’t this time, so I stay with Dylan and
play in the waiting room.
He does
great I am told by Dad, when they return. We bundle up and get ready to go to
dinner. Since it is now
Ok so we
head to the food court at the Longwood Galleria and have dinner. Kids had duh,
McDonalds and the grown ups had Chinese. We get back to the car and head for
home. Just as we get to the light on the corner of Rt 9 my husband’s cell
rings again, this time it is Gramps from Florida. I tell him we are headed home
and he will call us there.
Mom has
been at it since 3:00am when she go up for work, I can hear my pillow calling
my name…that’s where I am headed when we get home.
Gramps
calls and talks to Ian then me, then Dylan then his lil boy..I
remind him to check this site. As I always try to update it as soon as
possible. :::wavs::: Hi Dad, Hi Lois !!!!
Mom does
lights out for the night………………………………………………………………………..
Today is PT day and of course the bus is
late getting the boys home form school, they arrive at
We get
home around 5:15 and have dinner etc, Mom in law arrives around 7:00( she is going
to put Dylan on the bus in the AM and be there when he gets home just in case
we get held up in Boston)
Dad gets
home about
We make it out of the house on time and
head for
I check
in (only once this time) and we settle into a few seats, Ian is quite content
playing his GameBoy and it is only minutes before he is called in. Dad goes
this time too.
Mom sits
in the waiting area and plays with her Palm Pilot and before you
know it they are back. I had just been looking at the clock on the wall and
thinking that Dylan was headed out for the bus and they’re done 8:25am
He
didn’t need any contrast, so no needles and Dr K was looking at the CT
scan as it was being done. They even redid a few areas because they
couldn’t see what they wanted on the 1st set. I suppose Dr K
gets a few brownie points for actually being there for his test, but I hope his
bedside manner has improved too. I feel clueless when I leave Orthopedics.
They
were told to wait for the results, so that we can take them with us to the
appointment later.
The tech
brings out the results and we are free to do whatever until the Dr Appointment
at
We check
in and are taken to the exam room quickly. No sooner does the nurse put the CT
scan in the holder outside the room, then someone
picks it up and walks away with it. (this later turns
out to be Dr R)
We all get
to go in this time and we are seen by a Dr R and he looks Ian over, when I
mention the crutches he says “I can see why” I am puzzled, but we
move on. Asks Ian about any pain etc and Ian say nope.
Then he heads out to confer with Dr K.
They
both return and we talk for a bit, Dr K asks if we have been using the crutches
and I tell him only a bit, he has put us between a rock and a hard place. We
HAVE to exercise the leg muscles on one hand but yet have to be careful of the
leg bone. He won’t get better from the Dermatomyositis if we don’t
exercise the legs.
He tells
us he thinks it is an enchondroma (enkun’drowmu – A benign (noncancerous) growth of cartilage
in the bones or in other areas where cartilage is not normally found) I really
didn’t understand it at the time. Any information I relay is after the
fact, via web searches. I ask if I can SEE the MRI that gave them this
information, sure, if this computer works. Dr K brings it up and shows me
and I ask if I can get a print of the view that we are looking at and I am told
“no” no
explanation, no reason just no. Excuse me, what is up with this?? If I had not
asked I wouldn’t even have seen that much. And Keith and I had already
looked at the CT scans at breakfast or we would have never seen those either.
He wants to “just watch” it at this point.
We were
told if it breaks of course then they will biopsy it and repair the break, they
want to see him again in 3 months and will x-ray it again in 6 months. If
there are any changes then they will probably biopsy it while doing the CT
scan. Also if he has any pain in this area or trouble walking he should be seen
right away. So let me see, a month ago we put the kid on crutches, now it is do
nothing and skip the crutches. This just doesn’t sound right to me.
Thankfully I already have an appointment with another orthopedic person
I ask
about PT and he says no contact sports and no gym but no other details than that.
So what do I tell the therapist???
Well if
nothing else it is not more BAD news, it’s more like non news. We are all
done and ready to head home at
We scoot
up to the 6th floor and drop off some more goodies for Dr Susan and
then head to the Chocolate store. After that Keith decides to donate blood. (mom has been thinking about it, but just not brave enough
yet) we hang out there until he is done. We head for home around
Now it
is just another day, tho one other bit of news. Ian has gotten to the point
that he can take all his medication BY HIMSELF. I check the amount on the
Cyclosporine but he even takes that on his own. I am proud at how well he is
handling all this, but on the other hand I wish he didn’t HAVE to.
Dosage
change
|
PREDNISONE |
ZANTEC |
FOLIC ACID |
METHOTREXATE |
|
|
40 mg/day/AM |
75 mg/day/AM |
1 mg M-F/AM |
12.5 mg Twice Daily Saturday ONLY |
Twice/daily |
|
ADJUSTED |
MEDS |
EFFECTIVE |
|
CYCLOSPORINE |
|
35 mg/day/AM |
75 mg/day/AM |
1 mg M-F/AM |
12.5 mg Twice Daily Saturday ONLY |
Twice/daily |
WEDENSDAY
Appointment with
Rheumatology 11:30
I am up
around
We head out around
We arrive at Fagen6 around
We get to the exam room about
Then we wait, and wait, and wait. The waiting room was
the busiest I have ever seen it, when we walked in, almost as bad as Fegan2 is
all the time, so I figure it will be a while. I hear discussions in the hall
about how many people are waiting, well to me that must mean they are taking
extra care of someone, and a mere 3 months ago that was probably us.
We are checked on once or twice and of course when
Ian heads to the bathroom the Dr shows up. LOL It is somewhere
around
Dr J and I go over what has been happening for the
last 4 weeks since the last visit. He knows about the MRI and the CT Scan and he then logs right in to the hospital computer and
checks out the results, so he has ALL the information relating to Ian. (Now why
can’t orthopedics be as knowledgeable??? Or as
helpful??)
Dr J tells me ALL about the findings on the MRI/CT
reports and I apologize for taking up his time in Rheumatology with Orthopedic
questions, but I feel much more comfortable up here and they always have been
friendly and helpful and take the time to explain everything. This is NOT how I
feel in orthopedics.
We go over Ian’s meds and how he feels. Ian
feels fine tho I have noticed he gets flushed cheeks sometimes, and his eyes
look purpler on some days, I’m thinking it could be the light or just the
time of day, because today they look fine. (it may
also be me worrying since we are going down on his Prednisone ::shrugging:::
who knows.)
Dr J moves on and starts to examine Ian. He seems
to be doing fine. All the muscle tests he goes thru look good, even his neck
muscles this time seem to be in good shape.
I ask if I can get 2 of Ian’s meds in 3 month
increments since they are so pricey at the retail pharmacy and if I mail away
for them it will save big bucks. No problem there.
We discuss how we are tapering the meds and I show
him the charts of his blood work results and med dosages that I created for
this web site and my own records. “this is
great, can I copy them?” OF course. I’ll
even print you one in color for the next visit. (mom
is patting herself on the head. Yep good job)
We are all done and he goes to get Dr S (the boss;)
and he comes in to check on Ian, says he looks great, tho the leg muscles seem
to be a bit weak. (Got
that rock and a hard place here-exercise the legs muscles but take it easy on
the left leg BONE. How do we accomplish THAT??)
He says Ian’s neck muscles look good, he is
doing super. Yahoo. We are told to hold off tapering
the Prednisone until we get the results of today’s blood work. Well I
kind of expected that.
This is yet another good visit. Now off to Phlebotomy.
We ask for Sherma but she is out to lunch, and another tech has already come
into do the work, Ian toughs it out and we are FINALLY ready to head home.
It is
While updating some of my notes later on I try to
figure out when the next appointment should be, and it is not on a day we want.
4 weeks from today is 2/18 Ian’s birthday. When I tell him this he breaks
down, “not on my birthday” I comfort him and tell him no problem,
THIS time we will have to reschedule the appointment. Either 3 weeks or 5 weeks
or even on the 13th when we have another appointment in
Today is
just another day, mom gets a phone call that her new car has arrived at the dealership
and we can do the paperwork on Monday and the car will be ready Tuesday. (I
have school and may not be able to pick it up until Wednesday oh well)
The boys
have friends over and they are downstairs playing Game Cube, when I check my
email and find a note from Dr J. Ian’s numbers look GOOD, even with the
reduction in Prednisone. YAHOO YAHOO!!!!!
The only
one he didn’t have was the vonWil and he asked me to page him next week
to get that one. THANK
YOU THANK YOU DR J. That was a great bit of news.
|
|
CPK or CK |
Aldolase |
Von Will |
LDH |
AST |
ALT |
|
10-15-03/Wed |
516 |
~~ |
~~ |
~~ |
~~ |
~~ |
|
10-22-03/Wed |
501 |
15.3 |
- |
527 |
58 |
25 |
|
10-25-03/Sat |
130 |
15.3 |
170 |
489 |
37 |
25 |
|
11-05-03/Wed |
35 |
8.3 |
261 |
322 |
22 |
19 |
|
11-26-03/Wed |
23 |
6.5 |
301 |
319 |
22 |
24 |
|
12-24-03/Wed |
36 |
8.1 |
241 |
290 |
19 |
20 |
|
01-21-04/Wed |
39 |
9.3 |
205 |
265 |
21 |
16 |
|
NORM |
4-175 |
3.0-12 |
5.0-150 |
110-295 |
2.0-40 |
3.0-30 |
Dosage
change
|
PREDNISONE |
ZANTEC |
FOLIC ACID |
METHOTREXATE |
|
|
35 mg/day/AM |
75 mg/day/AM |
1 mg M-F/AM |
12.5 mg Twice Daily Saturday ONLY |
Twice/daily |
|
ADJUSTED |
MEDS |
EFFECTIVE |
|
CYCLOSPORINE |
|
30 mg/day/AM |
75 mg/day/AM |
1 mg M-F/AM |
12.5 mg Twice Daily Saturday ONLY |
Twice/daily |
The boys, Dad and Mom in Law have headed off to
Dosage
change
|
PREDNISONE |
ZANTEC |
FOLIC ACID |
METHOTREXATE |
|
|
30 mg/day/AM |
75 mg/day/AM |
1 mg M-F/AM |
12.5 mg Twice Daily Saturday ONLY |
Twice/daily |
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ADJUSTED |
MEDS |
EFFECTIVE |
|
NEORAL |
|
25 mg/day/AM |
75 mg/day/AM |
1 mg M-F/AM |
12.5 mg Twice Daily Saturday ONLY |
Twice/daily |
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JUNE 04 |
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