FOLLOW UP:
29/08/2010
Purpose of
Review:
Tracy, in fact this is all a positive report. I was telling people at
dinner tonight about your e-health. This confirms the benefits. I
have reduced contact from the 9th for 4 months so if my
responses are slow do not worry. I can do your record from
Italy. Terry NO DAPSONE increase.
From: tracey [mailto: tickle@gmail.com]
Sent: Saturday, 28 August 2010 7:28 PM
To: Hannan, Terry J
Subject: Re: Updated record.
Hi Dr Terry
Long time no txt.
No Mum. No boyfriend. Definitely no alcohol. Moving
house temporarily.
Swelling of face in morning gone by night. Minor.
Something different, one nostril nearly swollen shut?
Weird.
Starting to get itchy and rashes are starting to appear.
Terribly tired . Not sleeping well.
Would it be the thing to do if you gave me permission to
increase dapsone dose.
Also started taking lexapro tabs for anxiety and
depression. Anxiety attacks.
10 mg.
I exercise, tai chi, walk most places, am learning to play
ukelele ( fun) doing pliability exercises and radio two
three times a week. Church on sunday bible study one
evening a week. At least six hours two times a week
programming for radio.
Will check for your reply tomorrow.
Thanx ,Tracey.
Keeping busy, Dont want to get on the downward spiral.
Just concerned about health.
On Thu, May 27, 2010 at 10:22 PM, tracey <
tickle@gmail.com> wrote:
Assessment:
History
Assessment:
Examination
Investigations:
Management:
2214 hrs-I think your ‘disease’ is stable but the ‘stresses’ that
causes it are not. In fact it is amazing how well you are
handling them. If you recall you ended up in the DEM at LGH
when we could not control the recurrences. Look upon yourself
as an excellent survivor (with a little help from your friends.)
From: tracey [mailto: tickle@gmail.com]
Sent: Sunday, 29 August 2010 8:10 PM
To: Hannan, Terry J
Subject: Re: Updated record.
Hi Dr Terry
thanx for your reply . Have a great time in Italy. Could be
a good idea to tell me why no increase in dapsone. Then I
wont do it. Thanx again Tracey
26/05/2010
2343 hrs-DrTerry
Fuck shit what the heck.
Have stomach pain constantly.
Being tested for chlamydia gonorrhea?.
mostly on left side from 6-12+ not much after.
bloods+urine.
Mostly think out of med prof that it is bowel what ever+I
shoul\d be gluten free. acording to angio+aspergers.
Lets see. X T
25/05/2010
Hi Tracy, Yes the Depo sounds good. Your symptoms based
on what we know, are very likely related to maternal issues-all
normal.
From: tracey [mailto: tickle@gmail.com] Sent: Tuesday, 25
May 2010 11:32 PM
To: Hannan, Terry JSubject: Re: Updated record.
Hi Dr Terry.
This is the whole poo farm.
My eyes Have a bit of swelling around them and my throat feels like
it is being squeezed a little bit. just enough to be slightly
uncomfortable.
I am seeing dr E tomorrow and I think the depo provera shot would
be a good idea. No estrogen. What do you think.
I know all the the things that could go wrong by not having the
balance , but , the things I have been looking at on the web about
aspergers females is so me. Could someone be so chromosomally
challenged?
I get so sick when I have break through bleeding with the depo. I
wonder is it saving me from worse?
When do you go on holidays next? T
25/05/2010
19/05/2010
Purpose of
Review:
From: tracey [mailto: tickle@gmail.com]
Sent: Wednesday, 19 May 2010 9:49 PM
To: Hannan, Terry J
Subject: Re: Updated record.Always with
food So I say Hi
my name is Tracey and I'm an alchoholic . What problem
do people have with that? My Mum goes into paliative
care tomorrow. Suck eggs. As long as it is what she needs
cos she is so sick . I cant take the drugs that u can take.I
dont want to die, dont people understand?Is your Mum
alive?T
On Wed, May 19, 2010 at 10:01 PM, Hannan, Terry J
<Terry.Hannan@dhhs.tas.gov.au> wrote:OK. Hold onto
your pants. The next short time period will be tough. As the
French say “merde”. However, you CAN do it. Palliation permits
you to come to her AS A DAUGHTER/LOVER and let the
clinical people do the physical caring.
26/04/2010
Purpose of
Review:
2114 hrs- Hey Dr Terry
So tired. I seem to pay all day for 20 mins in the garden
lately. Looking back on what I have eaten I seem to have
ingested some estrogen based foods. They truly do affect
my condition or else I crave them sub consciously because
of an imbalance in my body chemicals. Just something
a Chinese herbalist put me on to.
Do you like Tom Waits? I find his music to be very male.
I admire his talent.Men seem to be attracted to his style
more so than women. I am not a loony , just burning a cd
for my boyfriend. Just like giving him a bunch of flowers!
He likes Tom.
Radio music wise Foxwell Brown is Star fm's latest
prediction for a hit. We get music months in advance of
popular commercial radio. You can find him on YouTube.
Cute. Funny. Aussie.
Tired of feeling tired at the moment.
Reading Augustin Burroughs Running with scissors.
Read Dry and Wolf at the table. Very easy reads. Take just
over a day.
Am reading Janet Frame. NZ writer. She wasn't run of the
mill either.
The thing I like about getting older is discovering that
there are so many books out there. So many interesting
theories, thoughts ,people , lives lived and still living,
music still to be heard and never will there be enough time
to discover it all. Forget space ( outer ) the earth's
resources don't need to be used in this wasteful fashion.
Earth friendly cars and travel Vehicles would be the
coolest.
Sometimes I feel we are one of God's most interesting
experiments Look at you and me . You have an amazing
talent. Your diagnostic skills are incredibly accurate. You
saved two lives in a matter of minutes. Mine and the lady
in the bed across from me. It was awful to watch how she
was getting sicker and sicker. And me in St Helens a cute
but swollen question mark. I flew to you on silver wings ,
delivered by angels, you took one look at me and I was
saved ! I hav'nt thanked you for a while so , here I
go...Thank you Doctor Terry. Thank you for saving my
life.
You must also know for the record that Ro . The nurse at
St Helens hospital suggested to the Dr that I should go to
Launceston to see you so that I might get an accurate
diagnosis. She knew. Lots!
All this from your eternally grateful patient , Tracey .
06/04/2010
Purpose of
Review:
From: tracey [mailto: tickle@gmail.com]
Sent: Monday, 5 April 2010 9:28 AM
To: Hannan, Terry J
Subject: Re: Updated record.
Hi Dr Terry.
I'm concerned that I might be feeling a bit depressed. Not
handling having to dicipline a 13 yr old . Not up to the
stand offs. Been doing it all the last few weeks and am
feeling a bit overwhelmed. Actually the confrontations
remind me of bullying, with me being the one suffering the
bullying. That depresses me as it reminds me of the girls
father. It bugs me so much that I zone out and forget my
tablets.
Just got to warn you I'm not into Platitudes at the moment.
Can't see the goodness in them .( I think they are full of
shit.).
Think that says it all .!!!
I'm aware that this could be menopause related. Certainly
do feel like the crazy lady.
Your question, do I feel suicidal? Yes I do and I feel like
crying alot too.
Might get you thinking that I have been here before.
Enough to recognise the signs and symptoms very early.
If I see the Dr, he will most likely want to put me on
tablets. I need your advice on this in particular as I have
tried these things before and they make me feel very much
worse , so much so that I have avoided them up till now.
Used to take atarax before they took that one off the list.
They only have the evil mind bending ones now. Nothing
is very easy for me at the moment, but I don't want to get
talked into taking their God awful pills.
Will wait for your reply.
Tracey
22/03/10
Purpose of
Review:
Management:
1943 hrs-20/03/2010-Hi Dr Terry
some minor swellings. As could be fore told in
the prophecy. Stress city. Seeing dr E next wed
if I remember.Blood tests on monday. sent
to you.
I like my new look. Having a good
time on radio. Moving
house in 2 weeks.Am aware that I rate high in
the life stress charts.
Gee I hope we have an easter where we dont
meet. As much as i like seeing your smiling
face. Hey I havent thanked you for saving my
life for a while. Thankyou very much Dr Terry I
relive that time often .You wouldnt think I had
much to be happy about at the moment but it is
life and i`m living it and there are lots of
kind people that make every day I WAKE UP
WORTHWHILE. thanks again Tracey
Tracy, a very appropriate insight and no platitudes from here.
I agree with the word ‘depressed’. The words you use suggest
“reactive” (to environment) rather than “endogenous”
(internal/chemical imbalance).
Your past notes also indicate the possible role of your mother’s
illness in all this. The “letting go /aloneness” that comes with
this.
The tablet regimen will be one of the first to go in situations like
this (normal). It is important to remember that we are ‘of the
understanding’ that “stress” can induce your angioedema
attacks so keep that in mind.
This is not a platitude but your ability to reach out like this is a
sign of your inner health and yes life is ‘shit’ at the moment.
Do not be afraint o discuss with your local doc but state you are
concerned about medications and your angioedema.
Terry
11/02/10
Purpose of
Review:
Assessment:
History
01/02/2010
Purpose of
Review:
1142 hrs- Hi Dr Terry. You are the best! You
will never guess what just happened! Met a lady
in the OP shop who has a family history of
angioedema. She is in her 60`s and two of her
brothers have it and it seems to be skipping a
couple of generations.
has`nt come out in a definite medical way in
later generations. Don`t know what type they
are . So glad to bump into this lady it has
made my year. She said that her mother had it
and she was a survivor of the nazi
concentration camps. It is just hitting me now
what an amazing thing has occured.Thankyou for
making the career choices you did. Thanks for
being there. Tracey
25-Feb-10-1321 hrs-Tell me about it Dr Terry!!!!!
O.K. Neesha was in hospital last weekend, so not over
boyfriend bust up then I get a call last night that Mum is in
hospital. She lives in Geelong. Some sort of bowel
infection. Her Dr wouldn't listen to her when she said
something was wrong. A new Dr she is seeing.. Poor old
bugger.
Sooooooo I think I have reached my limit. Eldest
daughter and two grandsons coming to visit for a week too.
Megan is a very kind and thoughtful girl so not too much
to worry about there.
Okay I'm starting to go under with all this unasked for
pressure. The asked for stuff is manageable. and I have to
move out of the house I'm in ,in about 8 weeks. Too much
rubbish rattling around in my head. Would like to hide
under a rock till it is all over. Mostly remembering to take
tablets. No catch up doses! These pills are doing a good
job to keep up.
Stressed x 10. Tracey.
so.kay ! the word for it should be changed from unplanned to un
expected.The last one in my late 40s died so i didnt have to make that
choice. i have been so good with my anti baby injections it still sits in
my mind that dapsone could interfere with my best plans. decided to see
what happens and not freak out. dr Inness had something to do with the
lepers in central australia. He is the Dr i am seeing at the moment cos
i`m not impressed with the other Drs being scared for whatever reason to
approach you. Dr I seems to be a colleague you have something in
common with. When I consult with him he seems to me, a complete
layman, to see the links with hormones and others concerning my skin
condition as well. He said to take it easy for acouple of days to see if the
swelling settles. My throat under my chin has started to swell so he said
cut out too much physical stuff and take it easy. I start to see that
Assessment:
History
26-Jan-10
Purpose of Review:
Assessment: History
Assessment:
Examination
09-Jan-09
something might happen and I clean up my act and do more than i need
to . I just dont want things to be in a mess if things do go wrong.
Anxiety?Fear Stress. I simply just want to live. Dont have any plans
.Only want to wake up in the morning.
Thanx Tracey. P.S He also said tongue in cheek that I am allergic
to men. Believe me that got a reaction.
1758 hrs 03/02/2010- Hi Dr TerryDr Iness Is at the gp north clinic here
in st helens. Will email details to you tomorrow. Dr I would like to work
in on this one with you. Will think about going off depo as soon as it
runs out . What to use instead? No condoms . too frustrating for the man
. Seems the older guys get the urge dies like r.i.p no second chances if
they have to wait to put a condom on. things aren`t too good on that
front as I seem to be sharing the bed with his ex his daughter and wait
thats not all his last girlfriend of a decade ago. they didnt have much
about for guys re counselling for abused men in
relationships. AAAAARRRGGGGHHHH!!!!!!!!!!! what ? whats that
you say? I must have killed a china man .!!! Dr I is looking to getting
something done about one of the nerves in my hand. Needs fixing. What
is the neurologist situation up there. Have they found someone to replace
the fellow specialist that died? Will text more tomorrow. Thanx T
Purpose of
Review:
Medical
Assessment:
From: tracey [mailto: tickle@gmail.com]
Sent: Monday, 25 January 2010 11:23 AM
To: Hannan, Terry J
Subject: Re: FW: Scanned from MFP-05372228 04/01/2010 14:02Hi Dr Tery
not feeling so good. Will make appointment 4 soon with Dr E. is thyroid
problem to be expected?
Having a bit of trouble swallowing & dealing with nausea. Rash I only had
when things were bad is back but not too bad. Feel yuck. Body heat is high and
i sometimes wonder if my hands and feet could boil water. Well enough chat .
Hope things arent too challenging for you. best wishes Tracey
1306hrs – 27/01/2010-Nothing on calender. My throat feels weird. near adams
apple. Hormones/estrogen. I have pimples i normaly get during pre period time.
Things are o.k but idon`t feel well. just like before things went wrong. I am
letting people close to me know that I can`t take too much stress at the
moment. I.E. arguing , intense discussions silly jokes. Will do what I have to
do if things go haywire. I would just rather not. Bit of swelling around eyes&
boyfriend said face looked a bit puffy. Being doing a few extra shifts at radio
station. Daughter has been away for two weeks. Feeling a bit emotional.
Hormones? Just don`t feel well. Will get dr to do pregnancy test? possible.
Would like to cancel that one out. I feel sick in my throat not my stomach.
Think i will leave it for you to have a Look at and get back to you tomorrow.
Thanks Dr Terry. Tracey
1755 hrsTracey, any ‘events of significance’ occurring at this time?
Anniversaries, birthdays, conflict days or just memories? Thyroid??
1215 hrs-Hi Dr Terry No wonder I couldn't wait to get off the steroids. Must have been l
WW3 inside me. Have told you about the nausea taking over from the eat everything in s
feeling. Fluid retention is up with this hot weather.some other weird stuff is happening , n
too deadly.
Seem to be handling stemitil tabs ( 5mg ) okay. I usually react to the first dose.
The rash I still have is confined to the inner thigh and groin area and is irritated by swea
Being so much heavier this year is not very pleasant. Thank God for reverse cycle air
conditioners. And thank God for you too!
Thanks Tracey On Thu, Nov 5, 2009 at 10:
Hannan, Terry J <Terry.Hannan@dhhs.tas.gov.au> wrote:Tracey, I was able to find an
interaction between Prednisolone and Dapsone (the first decreases the levels of the 2nd).
off the Prednisolone the Dapsone should be at a higher dose in your body. So best to obse
over the next week or so.
Never...! Thanx again. Tracey
On Thu, Jan 14, 2010 at 5:44 PM, Hannan, Terry J <Terry.Hannan@dhhs.tas.gov.au>
wrote:OK. This IS normal. Just don’t do CATCH UP.
From: tracey [mailto: tickle@gmail.com]
Sent: Thursday, 14 January 2010 4:47 PM
To: Hannan, Terry J
Subject: Re: FW: Scanned from MFP-05372228 04/01/2010 14:02
Hi Dr Terry having trouble remembering to take my tablets. is this a thing that happens w
you feel better? I will try harder.Just feel too good I guess. Thanx Tracey
On Tue, Jan 5, 2010 at 2:15 PM, tracey < tickle@gmail.com> wrote: Sounds to me like
have been truly blessed !
On Tue, Jan 5, 2010 at 2:12 PM, Hannan, Terry J <Terry.Hannan@dhhs.tas.gov.au> wro
Tracey, This sounds like a ‘new’ (uncovered) person. I have my grandsons here at the mo
Investigations:
Management:
Review:
04-Jan-09
29-Oct-09
Purpose of
Review:
Assessment:
History
Assessment:
Examination
Investigations:
Management:
Purpose of
Review:
Hang in there champ!
05/12/2009-1046hrs-Hi Dr Terry Feeling so much better. Finally got Dr E to diagnose r
Eczema . Cortisone cream gave almost instant relief. Can mow heaps of grass without fee
like I am going to die. Might be going on a bike ride tomorrow. Thanks for being there fo
Tracey
On Sat, Nov 28, 2009 at 10:52 AM, tracey < tickle@gmail.com> wrote:
Hi Dr Terry, Welcome back. There is the biggest thunder storm happening as I am Email
you. evil thoughts are no indication of good health.
still got bad rash happening. would like to deal with this. investigating estrogen in foods a
altering diet due to the effect it has on me. thank cyber space for the internet. Have felt m
looking into HAE3 of late. best to take information in small bites. it goes in better.
m
Good to have you back. Tracey
1540hrs 30/12/2009
Hi Dr Terry Just to let you know that I had a blood test today and the resul
should be sent to you. Should be interesting I think. Well I`m interested. N
liking blood tests at the moment . they hurt more than usual. Must be the
sensitive type. I am 50 now.
The rash i`m being treated for is most annoying and dr Innes has prescrib
stronger cream. I hope it works for a while at least.
Happy new year!!!!!!!!!! Tracey
Tracey, I was able to find an interaction between Prednisolone
Dapsone (the first decreases the levels of the 2 nd). So now off the Prednisolone th
Dapsone should be at a higher dose in your body. So best to observe over the ne
or so.
1047 hrs-04/11/2009-
***
1727 hrs-28/10/09-Tracy, this strongly suggests the Dapsone is working. Stress-pre-angioedema sym
insight-control. Well done.
We can consider fine tuning the dose soon. I need to research the doses.
From: tracey [mailto: tickle@gmail.com] Sent: Wednesday, 28 October 2009 4:15 PM
funny you should ask. just drove in to st H to pick up child & was late due to an unexpected visitor. child was tx
me to come get her. started feeling there was going to be some problem with breathing. used ventolin puffer. no
is doing much. feel like it is more in the area of my thyroid gland. rash got excessively irritating about an hour a
ago. thought this morning that maybe i was a bit worried about nothing as the symptoms werent progressing. n
what to do. can you ring me if you need to as i wont be near a computer till tomorrow. thanks Tracey
p.s just trying to stay calm. so i can tell what is going on.
On Tue, Oct 27, 2009 at 4:43 PM, Hannan, Terry J <Terry.Hannan@dhhs.tas.gov.au> wrote:Can you breathe
OK but airway would be of concern. Maybe Dapsone is modifying response. Send email tomorrow or
necessary.From: tracey [mailto: tickle@gmail.com] Sent: Tuesday, 27 October 2009 2:28 PM
Hi Dr Terry . Not sure how on earth you could tell from a photo when my face is already so swollen. hard to do
thing as online access is not available. this is how it starts. itchy eyes . swelling around eyes. rash. seems not to
aggressive. itchy eyes usually means i might not be able to see the next morning. will try to get you a photo late
afternoon. Thanks Tracey
Medical Assessment:
CNC Assessment
Investigations:
Management:
Hi Dr Terry
Rash is getting pretty bad. didnt sleep well last night.swelling around eyes is much worse. feel tired and short o
swelling in throat area is same as yesterday.
got an appointment to see dr E. at 4.15. he will probably want to put me back on steroids. [Take copy of this to
notes]
NO steroids! At least your airway is safe based on what you tell me. We are in NO MAN’S LAND at the momen
OK. Rash is not typical of angioedema.
will check my email before i go to see what you say. the symptoms are awfully hard to bear at the moment as th
like someone puting pins in the nerves. the itching is worse at night but a nuisance in the day. dont understand w
dapsone is meant to be doing. can you please explain.[I am not sure people know how it works or when it does.]
Tracey
From: tracey [mailto: tickle@gmail.com] Sent: Thursday, 29 October 2009 2:16 PM
Hi Dr Terry Rash is getting pretty bad. didnt sleep well last night.swelling around eyes is much worse. feel tired
of breath. swelling in throat area is same as yesterday. got an appointment to see dr E. at 4.15. he will probably
put me back on steroids. will check my email before i go to see what you say. the symptoms are awfully hard to
moment as the rash is like someone puting pins in the nerves. the itching is worse at night but a nuisance in the
understand what the dapsone is meant to be doing. can you please explain. Thanks Tracey
21-Dec-09
Review:
Purpose of
Review:
Use of the internet in patient care has proved a lifesaver for me. It has cut
stress levels enormously by getting answers to solve problems I might be h
very fast. I have found that it has kept my spirits up and helped me in my
recovery. You are so prompt with your replies it is great.
Thank youTracey
On Tue, Dec 15, 2009 at 2:25 PM, Hannan, Terry J
<Terry.Hannan@dhhs.tas.gov.au> wrote:
Good. I am in Sydney at a conference relating to patient's use of Internet for their
care
From: tracey [mailto: tickle@gmail.com]
Sent: Tue 12/15/2009 11:19 AM
To: Hannan, Terry J
Subject: Re: Updated record
Hi Dr Terry
No1 ok
No2 ok
No3 read it on drug info site on internet.
No4 I am relieved.
Thankyou
Tracey
Best wishes and a safe and happy Christmas to you and your family!
On Mon, Dec 14, 2009 at 4:33 PM, Hannan, Terry J
<Terry.Hannan@dhhs.tas.gov.au> wrote:
1.
2.
3.
4.
14-Oct-09
Purpose of
Review:
Medical
Assessment:
B12 once every 3 months.
If still anemic then ANOTHER cause.
We do not want you off Dapsone. Who considered that?
DO not need lots of blood tests.
From: tracey [mailto: tickle@gmail.com] Sent: Wednesday, 14 October 2009 12:46 PM
Hi Dr Terry down to 10mg. getting a little bit itchy. no rash yet. Notice the itchy bit becau
hasn`t been an issue for quite a while. Haven't been to see Dr E yet to get the results of las
bloods.
Dragging my feet a bit. Trying to keep up with the housework. Hard to find the energy s
days. Looking forward to the 28th when i don`t have to take steroids for a while. Maybe I
my girlish figure back ! Well for a while anyway. Great weather for ducks. Not for lawn m
Don`t have any ducks but have lots of lawn. Take care Tracy
1. 1250hrs-Well done.
2. You are experiencing the “steroid withdrawal” syndrome.
3. I was just sharing lunch with Libby as she is working with us this week.
4.
5.
CNC Assessment
Investigations:
Management:
1701 hrs-15/10/09-1. Steroids rev up the system, change your blood sugar to diabetic in s
situations, thin your bones, make your muscles weak and make you feel like s..t.
2. Your symptom documentation suggest 'modulation/modification' of the angioedema an
makes me hopeful it is working. WE (including Libby) have been discussing your case to
the intention of trying to get it published.
Hi Dr Terry re point 2. Could you please enlighten me to the other charming aspects of s
withdrawal syndrome so i don`t start confusing things .
My face and neck are swelling and my eyes are itchy. now none of this is anything but sli
annoying in the discomfort zone but it is noticeable.
just thought i would mention it rather than not. thanks Tracey
1.
2.
3.
4.
Review:
02-Oct-09
Purpose of
Review:
Medical Assessment:
28-Sep-09
Well done.
You are experiencing the “steroid withdrawal” syndrome.
I was just sharing lunch with Libby as she is working with us this week.
Remember “our past determines our present. We determine our future.
1429hrs-26/10/2009-Hi Dr Terry itchy swollen eyes &rash getting progressively worse. W
this out . want to get off the steroids. Daughter out herself into hospital with bad stomach
not related to pregnancy. Better now. they couldnt find what it was only what it wasnt. Ke
forgetting to ask if she is seeing another specialist. got to go illegally using library compu
online access closed for a course. Thanks tracey]
1644 hrs 27/10/09-Can you breathe? Eyes OK but airway would be of concern. Maybe D
modifying response. Send email tomorrow or earlier if necessary.
From: tracey [mailto: tickle@gmail.com] Sent: Tuesday, 27 October 2009 2:28 PM
Hi Dr Terry . Not sure how on earth you could tell from a photo when my face is already
swollen. hard to do the photo thing as online access is not available. this is how it starts. i
eyes . swelling around eyes. rash. seems not to be as aggressive. itchy eyes usually means
not be able to see the next morning. will try to get you a photo later this afternoon. Thank
Angioedema review.
1.
2.
3.
CNC Assessment
Investigations:
Management:
Blood tests-NORMAL
Remember “our past determines our present. We determine our future.
Recurrent stress symptoms and NO episodes of Angioedema. She doe NOT requ
steroids. Most of her symptoms are stress-related.
Dapsone appears to working in reducing attacks of angioedema.
BP is stress and Prednisolone effects (as well as elevating WBC).
1.
2.
Review:
Same dose of Dapsone
WITHDRAW AND ELIMINATE STEROIDS AS FOLLOWS.
a. 2/10/09-5/10/09 25MG/D
b. 6/10/09-12/10/09 15mg (3 x5mg) a day
c. 13/10/09-20/10/09 10mg (2x5mg) a day
d. 21/10/09-28/10/09 5mg (1 x 5mg) a day
e. Cease on 28/10/09
By email [1519hrs 6/10/10-Hi Dr Terry I start taking 15mg tabs tonight
Purpose of
From: tracey [mailto: tickle@gmail.com]Sent: Sat 9/26/2009 10:56 AM
. Fluid
retention is increasing. Irealise that most symptoms I have now are to do w
drugs and not the condition. will discuss all with dr E today and get back to
I need to . doing bloods today. hope all is going well with you. Tracey]
07/10/09-1336 hrs-Yeah ,Yeah .!!!! Such " lateness" for bloods. will get them
today. Had a good session with my psychologist. She is helping me with d
ways of seeing things. cds for relaxing and not thinking. Great stuff to roun
what you ( we) are trying to achieve.Would rather deal with Drs when I am
feeling well. It is easier and less stressful. thanking you ]
24-Sep-09
Review:
thanks Dr TerryCan I ask you how the blood test went ? Feeling a bit down at the momen
too much. My footy team Geelong is in the grandfinal so today will be stressful for a few
Say hi ! to libby for me. Will remember to make sure the Drs & hospital do an ecg next t
Lost the draft of an email I was to send as I am not too familiar with the procedure. It wou
send so I had to save it. Glad I`m not a doctor! Puting on weight fit to bust. Would like t
break from the steroids but can`t seem to see the end of it all. Maybe this is what is gettin
down. Well today is bright and cheering for the soul and so I am. see you soon. Tracey
Medical Assessment:
1552-27/09/09-Tracey, I am in Sydney airport. I agree the steroids are probably not good
and are having side effects that are maksing waht we are trying to achieve. I have a 'feelin
Dapsone is working and we awill trya na dsort all this out at the next meeting. Terry
CNC Assessment
Investigations:
Management:
Review:
Purpose of
Review:
1457hrs-23/09/09-Hi drs T&L in answer to q1. o.k . will remember next time.
Q3. more so. it is constant and uncomfortable. a constant pressure.
Q4. can you clue me in on this one.
Heart still a bit fast. Having bloods done today. Should I see Dr E ? Thanks
Tracey
Medical Assessment:
CNC Assessment
Investigations:
Management:
22-Sep-09
Review:
Purpose of
Review:
Medical Assessment:
11-Sep-09
CNC Assessment
Investigations:
Management:
Review:
Purpose of
Review:
Medical Assessment:
CNC Assessment
Investigations:
Bloods as ordered
0930 hrs-Q3-this sounds more like the ‘stress’ symptoms than the angioedema-always wi
difficulot to differentiate.
Q4-there is a high risk of blaming everything on the angioedema. You are ‘allowed’ to de
other symptoms of other problems. It will always need ‘careful’ clarification.
From: tracey
[mailto: tickle@gmail.com] Sent: Tuesday, 22 September 2009
hi Dr Terry things started getting worse yesterday so went to see dr E and
me to the hospital for an injection of hydroncortisone. not sure of dose. hea
was going at 100 miles an hour and throat started swelling more than it has
for the last few days. tablets being taken , one prednesilone + one dapsone
morning and same at night. taking it very easy today. injection seemed to h
heart still beating fast but not as fast as yesterday. looked in the side effect
dapsone and that was one of them. glad Libby went well. say hi to her for m
you on the 3rd of next month. tracey.
1456hrs-Tracey,
1. Make sure they get an ECG-cardiograph.
2. The fast heart rate may be due to the ‘attack’.
3. Was the swelling ‘less’ than before?
4. We have to be careful ‘what we are treating’ here.
Terry c.c. Dr. E. Cawson
FBC,UEC, LFTS
Review of response to Dapsone
Improving symptoms
Clarified allergy history – perhaps more drug intolerances than allergies
Clarified Angioedema history with photographic evidence of partial attacks over the past
History of undiagnosed acute abdominal pain as a child – consistent with type III Heredit
Angioedema
Discussed social history with significant stressors related to past relationships
FBC, UEC, LFTs
Management:
Review:
04-Sep-09
Purpose of
Review:
Medical Assessment:
CNC Assessment
Investigations:
Management:
1.
2.
Added 25mg night dose of Dapsone
Reassurance that on the correct diagnostic pathway and will eventually withdraw
completely
3. Maintain withdrawal regime of oral steroids
4. F/U with Terry Hannan on 25th September
1558 hrs-17/09/09
1. Tracy-case presentation well received and Libby did fantastically
2. IF attack is less severe then it may be the Dapsone
3. Try a whole tablet at night i.e. 2 per day
From: tracey [mailto: tickle@gmail.com] Sent: Thursday, 17 September 2009 3:31 PM
hi Dr Terry Not feeling good. swelling in face and neck. rash on arms legs and face. Not a
before because steroids control most swelling. stress recognised and being dealt with. No
only to shops. too many tourists! Seeing Dr E tomorrow. See you on the 25th. Tracey
1326 hrs- Hi Terry Just to let you know i picked the new drugs up and start them today. G
query about depo provera . forgot that i had that injection and must be ready for another o
this be OK ? Sorry forgot about mentioning this one.Glad you got the photo OK. it was a
trial with needing help to do it. Should be simple you would think. Hmmmmm!!!!!! Have
day See you next Friday . Thanking you Tracey
Tracey-I have just performed a literature search and am unable to find any interaction bet
Dapsone and Medroxyprogesterone acetate. This does not mean it will not occur as they a
combination.
05/09/09- Hi again Sorry Terry sometimes I can be slow on Picking up things that are being pointed out to
surprise ! is obviously that the assessment confirms the hereditary angioedema ? Hi terry
In answer to your questions . injection every three months. I will be seeing you next Friday and will bring photo
a nice normal photo. Not too scarey. e you then Tracey ri, Sep 4, 2009 at 4:35 PM
Well. Done.
1.
2.
3.
Can you send a NORMAL photo. It was pointed out to me they should be put side by side in your re
Which dose are you on?
DEPO-PROVERA (Injection) Prescription required. S4
Medroxyprogesterone acetate; NaCl, hydroxybenzoates; susp (vial);
Dose: Endometrial, renal cell carcinomas: initially 600-1200 mg IMI wkly; then 450-600 mg every 1
Breast carcinoma: 500 mg/day IMI for 4 wks; then 500-1000 mg at wkly intervals. Endometriosis: 5
wk or 100 mg every 2 wks IMI for greater than or equal to 6 mths. Contraception (150 mg/mL vial o
mg deep IMI every 3 mths, see full PI
Pack: 50 mg /1 mL 1 mL [1] : PBS/RPBS (Rp 1) PBS: $11.79
Pack: 150 mg /1 mL 1 mL [1] Brand substitution is permitted. : PBS/RPBS (Rp 1) PBS: $17.75 [$3
Please confirm receipt of record.
28-Aug-09
Review:
Purpose of
Review:
Review of angioedema.
Medical Assessment:
Hereditary Angioedema confirmed.
CNC Assessment
Investigations:
Management:
Review:
NIL [Do LFTS and FBC]
 Explained nature of her condition and saw photographic evidence of angioedema
 Commenced dapsone 50 mg daily for angioedema
 Decrease dose of corticosteroids slowly.
o 50 mg per day until 11th September
o 25 mg per day until 25th September
o Dose determined following the review by Dr Hannan
Dr Hannan 2 weeks [1535 hrs-02/09/09-Hi Terry Please find attached photo as discussed
to use as spoken about . Hope this will assist Tracey
To whom it may concern . I Tracey Mary do give my permission to Dr Terry Hanan to
photograph of me for any medical reasons he sees fit.]
17-Aug-09
Purpose of
Review:
Medical Assessment:
CNC Assessment
Investigations:
11-Aug-09
Management:
Review:
Purpose of
Review:
Assessment:
Investigations:
Management:
Review:
10-Aug-09
Purpose of
Review:
Assessment:
Investigations:
Management:
Review:
Dear Terry You are the man ! TraceyFrom: tracey [mailto: tickle@gmail.com] Sent: M
17 August 2009 11:32 AM Hi Terry You must be on holidays by now. i don't have the i
on at home so i use the online access centre in St Helens. my condition is worsening ie; sw
where the rash is on arms face throat and legs .Not feeling too good but no breathing diffi
so far. they don't want to see me in the hospital down here unless I am having breathing
difficulties. Is it ok for them to give me steroids to take the swelling down now before th
swelling gets too bad ? I am puting on my best front as my best face is out of action at th
moment. I hope you are having the best holiday ever you deserve it. yes I would like to
an appointment to see you. do I contact the specialist clinic at L G H ? see you soon Trace
On Mon, Aug 17, 2009 at 12:01 PM, Hannan, Terry J
1. Steroids safe
2. I am chasing results
3. Do you have or you should make an appointment to see me next week. As I am
4. c.c. Specialist Clinics URN 197967 Tracey
C1 Esterase C1 Est Functional 164 % (>70)
Report from St Vincent's Hospital, Melbourne.
1309 hrs-Hi Dr Hannan thankyou for the email. Have to say that after leaving you yester
of questions started popping into my head. like how serious is this condition? The questio
were asking made me think that it is life threatening in that it could wipe me off the plane
time. I would be most interested in seeing any information you currently have on angioed
Awaiting your reply.
1345 hrs- Tracey, by chance I had received a review of this condition yesterday from the
literature. It was essential for my continuing education.
Several issues were new to me.
1. Stress is often a major precipitant (of which you have had your fair share).
2. Adrenaline (Epi-Pen) is not the appropriate therapy.
3. Some new therapies are available for prevention and acute attacks.
I will try and collate some materials for you as YOU will often need to educate those who
you. These materials I am trying to have sent to me to distribute to the medical staff in the
ALL the more reason for YOU to have your own record.
1723 hrs-Tracey, yes I will send information to whomever you give permission to do so.
I also recommend that you ‘email it to yourself’ so there is a copy available anywhere in t
world. You diagnosis and management profile are not yet complete so we need to clarify
together. You do have another appointment with me? Terry
From: tracey [mailto: tickle@gmail.com] Sent: Friday, 14 August 2009 4:46 PM Hi T
wondering if you could send any information you have on current treatment to st helens d
hospital so they can put it in my file as the nurses who are my champions in the battle fo
as are you. I am eternally in awe of you. Tracey
History is suggestive of Angioedema
She is currently well.
Awaiting C 1 esterase assay
1. Cease Prednisolone
2. NO further medications unless review by Dr Ecchetema or Dr Hannan
After blood results available