|
|
|
|
|
|
|
|
JUNE 04 |
|
||||
|
|
|
|
|
|
|
|
|
|
|
|
|
|
NOVEMBER 2003
Slight sore throat/ He looks
flushed but he has not got a temperature, I checked it twice. Seems the prednisone
is kicking in, he is starting to eat like a horse (or more like his brother J
) The picky bone boy ate Steak-2 Small Baked Potatos-2 helpings of
corn-Applesauce (no sugar) Yikes!!
SUNDAY NOVEMBER 2ND, 2003
SAYS LEFT KNEE HURTS AGAIN – AFTER BIKE
RIDE
Back to normal, as things can be, the great news is that Ian RODE HIS BIKE today, something he has not wanted to do in months. It made me feel sooooo good to see it.
Again he is ravenous This time it’s Chicken-2
servings of Mashed Potatoes Corn and 2 pieces of Garlic Bread. Damn I may need
a 2nd job to feed him LOLOL
MONDAY NOVEMBER 3RD, 2003
Ian’s
1st Physical Therapy appointment is at
WEDNESDAY NOVEMBER 5TH, 2003
1st follow up
visit. The day starts early, we have to be out
of the house by 0630. 1st stop Dunkin Donuts. Ian wants a Bagel and
Mom needs caffeine
The
traffic is not to bad, we arrive at about
We check in fine and are almost
immediately called for the pre-checks. We do the usual Height and Weight check.
Ian has gained a pound and his BP is a bit high. (I was told this could happen
because of the meds – doesn’t seem to alarm anyone)
We head to the exam room and wait. Ian tells me the Dr’s don’t seem to know the rules. He is supposed to really get into his Game Boy Game and then the Dr is supposed to arrive and interrupt it. (We use this technique to hurry the Dr’s along LOL) oh well it isn’t working this time I tell him. The good part about waiting is that it means you are not that sick. The longer you wait the better you are. If everything goes RUSH, RUSH, RUSH it means you are SICK.
Ian figures out another technique to use
for hurrying the Dr’s. he decides to go to the
bathroom, and once he is gone, Dr S pokes his head in the door. Don’t it just figure??? I head to the bathroom to find
him. Yep he is STILL in there. We
finally head back to the exam room and Dr S returns.
Dr S checks Ian out and is pleased with his
improvements. He asks Ian if he feels up to the kids in his class or almost up
to them. We get almost for an answer. This is WAY better than a mere 2
weeks ago. (Was it only that long ago??? Seems like a lifetime ago that this
madness began)
Ian does the important test,
he gets up off the floor without pushing on anything, not even himself. Dr. is
pleased. We discuss the new meds we will
be adding. Methotrexate and Folic Acid. The
Methotrexate will be given once per week on Saturdays and the Folic Acid Monday
thru Friday, since the Folic Acid interferes with the
absorption of the Methotrexate you must skip it on the day you take the
Methotrexate.
Then we are told we will have to go down
for more blood work and the tears being to flow. Dr S is very understanding and
gives Ian a shot blocker thingy that is a small rubber thing with lil tines on
it. You rub it on the area prior to the needle poke and it helps mask the
sensation. Ian is still not convinced but quiets down. Dr. S also says we
should see someone to help Ian deal with the needle phobia. I definitely agree.
I am given my forms and off we go to the front desk
|
|
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 |
|
NORM |
4-175 |
3.0-12 |
5.0-150 |
110-295 |
2.0-40 |
3.0-30 |
CURRENT MEDS
|
PREDNISONE |
ZANTEC |
FOLIC ACID |
METHTREXATE |
|
25 mg Twice
Daily |
75 mg Twice Daily |
1mg
M-F @
dinner |
12.5
mg Twice Daily Saturday
ONLY |
We need a follow up in 3 weeks, and an
appointment with Behavioral Health, and to go downstairs for the blood work.
Ok we leave with “someone will call you” for BOTH appointments to be scheduled. I have learned to wait till they call me, because it is very difficult to get a hold of anyone in there and if per chance you DO. The appointment they offer is 3 months from say next Tuesday. And you end up leaving a message for a call back anyway. Now that I am USED to this system I am OK with it. J
Ok off the Phlebotomy
dept. BUSY place. I go to check in…ooops no
blue card. (Blue Card =’s Children’s
Hospital ID) I follow the corridor back the way I came to another desk,
the man behind the desk quickly issues us a BLUE card.
This has Ian’s name DOB and Children’s Hospital ID number. Back to
Phlebotomy and turn in the Blue card. The woman at this desk is jovial and says
we are NOW part of the elite club. I reply laughing “No offence, this is
one club membership I would have liked to have SKIPPED” She nods in agreement with a big smile.
Ian is fine until it is his turn, then the
tears begin. We have a fantastic tech named Sherma, she offers to let him go to
another room, so he can lie down while she does it, or
stay here and get it over with. Ian is mad, he wants the EMLA. I explain it
will take too long to work now, and we will be better prepared next time and
ask upstairs for it. So I grip his hand and cover his eyes, and Sherma begins,
the next thing I know Ian wants me to more my hand…It isn’t hurting
and he wants to watch. Yuck, now the boy is just like his father. LOL, (Hey I can’t even watch when they do the finger
prick on me-Mom is super wimp when is comes to needles)
Wow we are DONE!!! Off to the
Well of course if you take ANY kid to a
food court, what is the choice??? You guessed it McDonalds. While I reiterate to Ian
this is a treat and will NOT happen on a regular basis. He happily munches down
his chicken nuggets and French fries. Mom has a salad. With lunch complete,
it’s back to CVS pick up the scripts and head for the car. We parked on
the TOP floor (Ian wanted to) but I told him NOT next time, seems lots of folks
have the idea to arrive or depart at this time and it takes a while to get down
all 8 floors.
The ride home is uneventful and we arrive
there at about
The kitchen window sill is looking like quite the pharmacy, but Ian is great about all the meds he has to take. He reminds me at dinner time, since he likes to take them with a drink OTHER than water to mask the taste if he doesn’t quite get it down on the 1st try.
SATURDAY NOVEMBER 8TH, 2003
Ian
1st dose of Methotrexate, so far nothing seems to have really
bothered him, meaning no side effects to speak of. Though Ian complains about
being very tired today, and I had noticed while reading JULIA’S DIARY,
that it is mentioned that she too was affected with this as a side effect of
the Methotrexate. So I shrug it off and things move along as usual. THANK YOU
again to Julia’s dad for posting her diary. It is what is keeping me sane
thru this whole thing.
MONDAY NOVEMBER 10TH, 2003
Ian 2nd PT appt. things are a
bit busier this time, he does all his warm up
stretches and then they do a few exercises and I am shown how to incorporate
the stretching with other things, like playing a card game so that it will not
be such a tedious task to complete. These will work out well. Home late (for us that is
I am in my usual spot on the computer,
when Ian comes in and asks me to get my digital camera ready. I ask if he
thinks he is ready to try the wall climb again so soon. He couldn’t make
it last time and he was very disappointed. Yep he says, he
wants to try.
Camera in hand I head to the hallway. I
tell him to wait until the flash is warmed up and it is ALL SET. Ok bud, thumbs
up. And up he goes, it takes him a few tries but he gets BOTH feet off the
ground and hangs there for a little bit. Not as long as he used to, nor did he
get as high, but he got BOTH feet OFF the ground and
stayed there. Check it out
clic here to see
Spiderman’s Return not too bad for only 19 days on the medication.
TUESDAY NOVEMBER 11TH, 2003
Well
today is a holiday and I decided against working. I am told by Ian’s Dad
that the Prednisone is almost gone and we need to order a refill.
Ok no problem there. Or so I thought. I
do the Rapid Refill thing and figure we are all set..NOPE
Insurance company says we shouldn’t
be out yet and CVS calls back to relay this. I tell them the dosage was changed
by Dr K on 10/29 from the 3 pills twice a day to 5 pills twice a day, and we
are now almost out, they say they will cal the Dr and take care of the
adjustment.
I call later that day and they still have
not heard from the Dr. But they know he needs to stay on his dosage and tell me
that if I have to I can come in and pick up enough for a few days until the Dr.
gets back to them.
THURSDAY NOVEMBER 13TH, 2003
Ok today is Ian’s 1st appointment at the “Coping Clinic” this is where he can talk to someone about what is going on in his life. The main reason for this is to help him cope with the lab work. So he can stay calm while they take the blood samples.
Our appointment is for
All goes well with the pickup and the
drive in. We arrive in PLENTY of time for our appt. but there are NO parking
spots left in the garage. NO PROBLEM there, I turn around and head for the
Valet Parking. (it’s only $3.00 more) We hop out
of the car, and I hand my keys to the valet, and we are off.
CHILDRENS
HOSPITAL PARKING INFO
We head in to get the ticket validated. PLEASE ALWAYS REMEMBER TO DO THIS !!! It will save you a lot of $$$$. I then ask at the desk if there is any way to locate our favorite intern. They checked all the places they could think of, but no luck. Bummer. Well it is still early and we head to the Longwood Galleria for lunch. Where else do the kids eat?? Yep McDonald’s again. Thank goodness I brought my own. I WAS on a diet before all this started. The good news is thru it all I have maintained, and NOT gained anything. But I haven’t lost anything either. Whew.
Ok off to FEGAN 8 and Rachel. We meet and she has become more familiar with Ian’s case and she says she has a free hour after this one, and she would like to see Ian for the 2nd hour. (note: the 1st visit is usually just the parents, so they can get the facts and such about the child) so Rachel and I talk from 1-2 and she sees Ian from 2-3.
Poor Dylan is BORED to tears tho he has
found a friend in the waiting room. He
is keeping busy with his Game Boy
Advanced while I fill out the 6 pages of questions about Ian.
Things went well, and we head for home
around
MONDAY NOVEMBER 17TH, 2003
3rd PT appointment, things are progressing
nicely, he works on some strengthening exercises and the hour flies by. We are
done before you know it.
THURSDAY NOVEMBER 20TH, 2003
Today is Parent Teacher Conferences. Well
surprise, surprise, I get nothing but RAVE reviews on BOTH boys. Tho
Ian’s teacher is quite impressed with the progress he has made
physically. At the start of the year he was quiet,(to
a degree-he never shuts up ;) thin and frail. Now he is perky, filling out a
bit and seems quite healthy. I am grinning from ear to ear. It is good to hear
these things. He is a good student, he needs to slow down and not always try to
be the first one done.
I head to Dylan’s teacher and get
the same kind of review on him. These are days you feel like your doing things
RIGHT for a change. Today they were both just normal kids and no sign of the
disease. Except the puffy face, but I keep telling myself that this will go
away once the dosage is lowered. And because he was so thin to start with, it
doesn’t look too bad.
FRIDAY NOVEMBER 21ST, 2003
Ok mom got smarter today, she DID NOT work
and try to race home to get the boys and then BACK to
Ian’s 2nd appointment
with Rachel, they worked on a few more relaxation techniques and she suggested
that I go down stairs to the Rheumatology Dept. to see if the EMLA was
something we could get ahead of time and do ourselves or does it have to be
done by a nurse. Since we are in the same building, why not??
I ask at the desk, and I have to ask a
nurse, no problem there, but it is getting late. I tell her never mind, I will
ask as soon as I get here on Wednesday. Thanks any way.
Off to the car and the traffic, man I hate
coming out of
MONDAY NOVEMBER 24TH, 2003
PT appt #4, things go as usual. Ian works
on arms and leg strength. He is making it look easy. I hope that when they check his blood work
this week he can go down a bit on the prednisone. (wishful
thinking I know…it’s only been a month on the meds)
Ok finally got some info on the EMLA. Yep
it is a prescription and it can be done by me. Now I just need to get the
stuff. Will call Dr Laura and see if we can arrange it.
TUESDAY
NOVEMBERER 25TH, 2003
I Called Dr Laura today, she says that EMLA
is not available locally, (seems they had some packaging issues and had to
recall the product to make it child proof) The local Pharmacies have sent the
old tubes back and have not received the new stuff yet.
She recommends an alternative-LMX4 she has
called my local CVS and they DO have it. Great I will be there ASAP to pick it
up. Since we have an appointment tomorrow, this will be really helpful. I am on
my way home at the time and change directions for the Drug Store. I head to the
pharmacy counter and ask, yet they have it…but man it’s a teeny
tube maybe 2 doses and $15.00 yikes. I’ll have to ask about a script for
the EMLA in Children’s tomorrow.
WEDNESDAY
NOVEMBERER 26TH, 2003
Ok follow up visit number 2. BOTH boys and I head out the
door at
Mom
needs the caffeine and kids want donuts.
The traffic tho heavy is moving right
along, we make great time and arrive at the parking garage at
We
head to the 6th floor around
Dr S2 is in to see us today. He seems
pleased with Ian’s progress, and in the areas that are still lagging,
(his neck for one) he tells Ian that it is one of the last places that comes
back to prior strength.
He did have some disturbing news tho. It
seems that there have been 3 more cases
of Dermatomyositis in the LAST 2 WEEKS. I hope there is
someone trying to make a correlation of the cases to see if there is a common
factor. Because of the rarity of this disease, this to me would be considered
an epidemic.
We discuss
Ian’s meds, Dr S2 wants to put the whole dosages
in the AM, which means no “appetizers” with dinner. Ian thinks this is a good idea. Dr S
notices the LMX4 on Ian’s arm and we talk about getting us a script of
it. Yep no problem there. He also writes us a script
for Zantax 150mg, these we can get this way. The 75mg
are now NON script and VERY pricey. We get another script for prednisone but
20mg pills this time (not the current 5mg ones we use). We will have to mix and
match to make the required 50 mg but it will cut down on the number of pills
considerably.
I ask if
they ever found the x-ray of his left leg. He will check with Dr Susan and be
right back. They both return, and Dr Susan says Ian looks wonderful. The best
explanation about what they found is that it is a less dense spot in his left
femur. This would make it more susceptible to fractures etc. So since they are
not bone people, we add yet another Dr. to the list.
We give Dr
Susan a copy of the Spiderman
Photo and
she is thrilled. I ask about the OTHER JDMS cases that they have, seems one lil
boy was admitted just yesterday, only slightly less weak than Ian was when he
was admitted.
I offer to go visit, to let them know, things will get
better, but I know, patient confidentiality, she can’t tell me who they
are, so I give her my email address and tell her to give it to the parents, if
they want to just talk, please let me know.
We head for the front desk…with 3 new
scripts and to make 2 more appointments, 1 with Orthopedics and 1 with
Rheumatology. I hand in the papers, the
clerk at the desk calls Orthopedics and we get an appointment for Tuesday December 23rd,2003 @ 1:00
pm and wow we actually got our appointment for Dr S too, no call backs his
time. It’s for
Now it is
off to Phlebotomy, for the lab tests. Ian is more secure with the LMX4 on his
arm and as we walk in he reminds me to ask for “Sherma”. I see her
behind the counter so I tell her Ian would like to wait for her if that is ok.
“no Problem” she says. We are asked twice
if we are waiting for Sherma, yes is always the response.
We are
called and head into the same room as last time. Ian starts to get hyper, but I
see him use his relaxation techniques that Rachel taught him. No tears,
breathing deep, he has the LMX4, the shot blocker form Dr S2 and he is good to
go. He asks Sherma when se is going to start (his eyes are closed-and mom is
looking the other way) She already has, she tells him. He didn’t feel a
thing. No tears, no nuthin. Yahhhhhhooooooo!!!
Ian and I
head back to the waiting area and lil bro.
I decide to get the scripts filled BEFORE we head for home. So back to the big screen TV, after I drop the scripts off at the
lobby CVS. Great 20 minutes and now only 1 stop on the way home,
Wal-Mart.
|
|
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 |
|
NORM |
4-175 |
3.0-12 |
5.0-150 |
110-295 |
2.0-4.0 |
3.0-30 |
CURRENT MEDS
|
PREDNISONE |
ZANTEC |
FOLIC ACID |
METHOTREXATE |
|
25 mg Twice
Daily |
75 mg Twice Daily |
1mg M-F @ dinner |
12.5
mg Twice Daily Saturday
ONLY |
|
ADJUSTED |
MEDS |
EFFECTIVE |
|
|
50
mg/day/AM |
75 mg/day/AM |
1 mg M-F/AM |
12.5
mg Twice Daily Saturday
ONLY |
THURSDAY
NOVEMBERER 27TH, 2003~~~~~~~THANKSGVING
Quiet day, Dad and the boys did the cooking and mom
did homework. A good day to be thankful things were caught early and we are
headed up the recovery ladder.
|
|
|
|
|
|
|
|
JUNE 04 |
|
||||
|
|
|
|
|
|
|
|
|
|
|
|
|
|
