This is the day to day account of my 21 year old son's battle with UV.
I have made many notes over the last 18 months and watched this awful illness almost destroy us as a family.
My medical observation notes from when all this awful stuff started in 2011 are handwritten so I will re-write them when I get time.
My son, who means the world to me, has always been special. He is my third child and dearly loved. At birth he seemed completely normal.
By the age of two years, he began to stand out from other toddlers due to his incredible memory and ability to learn new words way above the level of his peers.
By the age of 5 the diagnosis of ADD was made. Dan, although incredibly gifted in many ways began to show signs that although he could memorize almost everything, he had a lack of understanding of many day to day things. He became obsessional about routines and certain object and the diagnosis soon moved towards Aspergers.
Dan had also developed some health problems. By the age of 6 or 7 he was complaining of palpitations when he went to bed at night. He was placed on 24 and 48 hour heart monitors but nothing abnormal showed up. he had a heart murmur but that had been there since birth.
There were also calcium distribution problems. His little finger nails were like paper and curled once they grew and he had to have malformed back teeth removed at a very young age.
Despite this, he had a normal childhood despite the challenges of Aspergers. Education was difficult and he was badly let down by the UK school system as he needs were just not met.
By the age of 15 it was clear that he also had an overgrown jaw which prevented him from chewing food. I think it is all connected to the calcium problem, After orthodontic work this improved slightly so we managed to avoid surgery.
Hindsight is a Wonderful Thing.
Knowing what we know now, the Urticarial Vasculitis was manifesting by the age of 16 in 2007.
Dan often complained of "shooting pains" in his arms and legs, palpitations, chest pain and dizziness. He also had very high blood pressure for such a young person.
I took him to the GP over and over again. I was told he must be having panic attacks causing the symptoms and the high BP must be because he was nervous at the surgery. I believed the GP and tried to reassure Dan nothing was wrong. If only I had heard of Vasculitis!
Dan continued to suffer.
The Summer he turned 16, out of the blue, he developed Hayfever. He had never had this before and was dutifully placed on antihistamines. Strangely he also started to become sensitive to every day products. Sun cream that we had always used started to irritate his skin to the point we would have to scrub him in the shower to get every trace off of him. Shower Gels caused him to turn bright pink and itchy and he started to develop a wheeze that the GP said was just an allergy to dust or something.
At the age of 17 Dan started complaining of severe heartburn. We gave him the usual over the counter medicines and warned him about eating spicy food and drinking too much alcohol. However, it just got worse to the point that Dan started having problems keeping liquids down.
Back to the G.P's we went. The GP was concerned enough for Dan to have an examination where a camera is passed into his stomach to see what was going on. Dan found this a traumatic event and has sworn he will never have it done again. Usually, somebody with Aspergers lives in a very black and white world so no really does mean no! Unfortunatley, he was diagnosed with a Hiatus Hernia and Barretts Esophagus.
Dan was by now 18 years old and diagnosed with a condition that is mainly seen in adults that have suffered severe reflux for many years. It is almost unheard of in an 18 year old. Due to the fact that the change in the lining of his esophagus could lead to the cells turning cancerous he will need to be monitored at least every 2 years. I was really upset. As Mum's do, I started imagining the worse scenario and new I would have problems getting Dan to agree to the camera procedure in the future. After a couple of weeks of being in a complete state I knew I had to be positive for Dan and tried to shelve this problem in the back of my mind.
The reflux was still so bad that if Dan had a drink of beer, moments later he would have to rush to the bathroom as the whole drink would just shoot right out again. The GP put Dan on Proton Pump Inhibitors to stop the acid but this did not prevent the reflux.
Dan was referred to the hospital to see a stomach doctor. This doctor decided that the little valve that should close after food has passed through was faulty and would need to be surgically tightened. As I said, hindsight is a wonderful thing and we were later to learn that the valve was inflamed due to Vasculitis which prevented it from working properly. He did not need surgery at all.
Any way, the diagnosis of UV during the terrible Summer of 2011 made all of that irrelevant.
Summer 2011. Diagnosis of Urticarial Vasculits
We now knew Dan, for some strange reason, had suddenly become hypersensitive to so many things. He had terrible Hayfever and was developing Asthma. He was complaining more and more of aches and shooting pains but as I had been told by the G.P everything was stress related I did not pay as much attention as I should have.
Then the rash came.
This started slowly at first. Little spots here and there and all over itching. We gave Dan anti-histamines and hoped he was just re-acting to pollen. However, the rash kept increasing and he was finding it harder to breathe.
The rash began to spread over his entire body. He was itching all over. Then the swelling started. First his feet, then his hands and he began to look really unwell.
I took Dan to at least 3 different G.P's that all said it must be an allergy. They did not do any blood tests and dismissed my concern that he had developed high blood pressure. I was told to change the washing powder I used and wash everything he came into contact with with a product for sensitive skin.
I really thought I had done everything I could.
The problem was it was August now and we were about to go on holiday to Hawaii for nearly 3 weeks. Dan would be at home but his Nana would be checking on him. I honestly just thought it was an allergy so we made the decision to go.
The first week we were away was not too much of a problem. I called home every day and got an update on the rash and how Dan was feeling.
By the second week it was clear something more sinister was going on. Dan was becoming really ill. His reflux was awful, palpitations and a temperature capped it off.
Dan's Nana took him to a GP who said it was still just an allergy and to be honest, did not want to know.
Things went from bad to worse. I got the call I was dreading. Dan's Nana had to rush him to A&E late one evening as he had started vomiting, sweating, covered head to toe in an awful rash, his feet were so swollen he had to crawl to reach the telephone to call her. He was clearly very unwell.
The A&E department were close to useless. They did a blood test but did not follow up the result and still kept saying it was an allergy. However, a nurse on the ward took one look at Dan and said she thought it looked like a problem with his immune system. Dan's Nana confronted the hospital doctor and suggested this to which he said "we are A&E doctors, not immunologists" and promptly discharged him with steroids and told him to go back to his GP! Nana was furious.
By this time we were thinking about cutting our holiday short and returning to the UK. I trusted Dan's Nan to care for him but knew I had to take urgent action to get him the treatment he needed.
From my hotel room I scoured the internet to find the best immunologist in our home area. One name kept coming up. Hilary Longhurst. Hilary is a consultant Immunologist based in Barts Hospital, London.
Luckily 's she did have a clinic once a month in our local hospital. I called Dan's Nana with her contact details. Nana called her secretary who recognized at once that Dan was in real trouble. The Secretary was amazing and called our G.P's direct to make an appointment for Dan to see Hilary at her next clinic. This would be soon after we returned home.
Dan was now on 6 5mg prednisolone tablets a day along with antihistamines.
Dan was very ill when he finally made it to the clinic. He had just had a barium swallow requested by his stomach Doctor for his reflux but Hilary and her colleague Dr Jenkins wanted Dan admitted at once. His pulse was well over 100, his BP was very high and he could hardly walk. We did not know at the time but his blood test showed ESR levels over 100 which is about the highest even Hilary has seen. Dan was put on a drip (steroids I think). Dr Jenkins wanted to monitor Dan is hospital for at least 2 weeks and do a bone marrow biopsy. However, due to Dan's Aspergers he refused to eat or drink and wanted to come home. We managed to keep him in 1 night. The next day a skin biopsy showed Urticarial Vasculitis. At last all our fighting with G.P's and doctors paid off. I always knew his symptoms were too extreme to be an allergy and my Mother's instinct was right.
Dan came home on the understanding that I would do observations at home to pass to Hilary and return him to the hospital if things got worse.
November 2011. Home Obsevations.
11/11/11
Dan has chest pain on the left hand side of his chest. He also has pain in his left wrist. The rash is evident. Lesions on his left palm. His hands are painful. Pain in feet. The underside of his foot is swollen and it is to painful for him to walk today. Feeling very weak and drained. Painful lump on his right hand thumb. Solid large lump on his head with increasing head pain. Pain in head coming in severe bouts lasting up to 10 minutes.
Pulse 114 BPM. BP 133 over 62.
12/11/11
Severe chest pains. His chest is also hot to touch and itchy. Painful hands (palms) and feet. Body rash increasing. The muscles in Dan's arms are painful. feeling very weak. Deafness in right ear over the last few days.
Pulse 98 BMP. BP 142 over 87.
13/11/12
Woke up with painful toe joint and lumps on hands. Feet painful and itchy. Chest pain increasing. Very deaf in right ear.
Severe head pains.
Feeling very weak and starting to get wheezy. Breathing becoming an effort.
Pulse 104 BPM. BP 143 over 76.
14/11/11
Pain in upper lower underarms. Sharp head pains. Much more wheezy and having problems getting enough air. Painful palms. Weakness in muscles. Rash has improved but a nocturnal cough has developed. Inactive day. Unusual bowel movements. Increasing depression. Deafness in right ear.
Pulse 85 BPM. BP 150 over 77.
15/11/11
Woke up with tummy cramp and sever lower back pain.(before taking antihistamine). In evening, throat began to swell and close. 2 puffs of Seratide and antihistamines taken. Deafness in right ear and shooting head pains continue.
Dan now has a wheezy cough day and night. The rash returns as soon as Dan id due for his 4 hourly antihistamine. Acid reflux today.
Pulse 107 BPM. BP 130 over 67.
16/11/11
Severe chest pain in the morning. Bloodshot right eye. Small amount of rash returning to body, especially Dan's wrists. Large red itchy lump just below left elbow. Hives and rash as soon as blood pressure cuff removed.
Pulse 92 BPM. BP 130 0ver 67.
17/11/11
Woke up with severe head pain on lower right side. Headache and discomfort. Worse if Dan bends down. Rash on feet and body. although Dan is drinking lots of water he is passing dark orange urine. Increased acid reflux. Rash is worse today on hands and feet. Feet too painful to walk. Consultant advised to increase the amount of Seratide Inhaler.
Pulse 94 BPM. BP 138 0ver 67.
18/11/11
Severe rash around neck and top of arms. Feels like his throat is closing. Head pain has gone but his scalp is really itchy. Feeling very unwell. Painful left foot. Puffy eyes. Body rash much worse than usual. Ringing in right ear.
Pulse 121 BPM. BP 137 over 68.
19/11/11
Cough and wheezing so bad that Dan will take Seratide 125 twice a day from now on. Pain in wrist and foot. rash is itch but under a little more control.
Dan's chest is very bad. Wheezing, Acid reflux is also increasing.
20/11/11
Stabbing pains in Dan's chest. Apart from this, it has been a better day.
22/11/11
Itchy feet. Constant left chest pain. Cough is continuing. Dan has had a bad headache all day. No shooting pains in his head though.
Pulse 87 BPM. BP 128 over 66.
23/11/11
Dan keeps going deaf in right ear. Very bad headache. He was grumpy today so did not want me to check his BP or pulse.
Dan blew his nose this morning and blood came out of both nostrils. Shocking chest pains.
Blood test today has created an itchy rash around the test site. Hospital checked pulse which was 114.
Right knee joint aching and itchy at the same time.
24/11/11
Dan woke during the night with unusual extreme thirst. Pain in finger joints.
25/11/11
Shooting pains on right side of head. Pain in wrists.
Pulse 90 BPM. BP 137 over 65.
26/11/11
Rash has returned to Dan's wrists. Very lumpy lesions. Not the flat type he often suffers with. Shooting pains along right arm. Flickering right eye and pain on right side of head.
Pulse 83 BPM. BP 125 over 66. (Taken late at night)
27/11/11
Dan was woken in the early morning with chest pains. Also had a shocking pain behind left hand jaw bone.
Continuing shooting head pains and bad wheezing.
Pulse 95 BPM. BP 133 over 67.
28/11/11
Head and chest pains. Swollen eye lids before antihistamines were taken. No rash today and breathing is getting a little better. Deafness a little better.
Late evening: A large solid lump has appeared on the right hand side of the top of Dan's head. dan is very worried.
Pulse 80 BPM. BP 126 over 66.
29/11/11
A few chest pains today. Small amount of skin rash. No head pain today.
Pulse 86 BPM. BP 132 over 70.
30/11/11
Rash under right eye and eye lid swollen. Eye flickering. Aching muscles. The wheezing has increased despite increasing the Seratide to 3 times a day. Painful acid reflux. Lump came up on the roof of Dan's mouth but went after an hour or so.
Pulse 85 BPM. Pulse 126 over 66.
1/12/11
A very bad day. Arms and legs ache. Rash coming back. Rash on face and neck. Very severe lower back pain. Large lump on right arm very painful. This is a large solid lump about 3 inches x 2 inches. The lump is pink and itchy.
Rash seems more lumpy than usual and started by following the vein along Dan's right arm. Severe shooting pains up right arm and right side of neck. Rash on palms. Dan feels weak and achey. Night cough has returned.
Pulse 100 BPM. BP 136 over 75
3/12/11
Bad shooting pain on right side of head. Severe Palpitations. feel weak and unwell. Aches all over.
During the winter, things seem to calm for Dan. He took all his prescribed medication (but no steroids at this time) and seemed to cope. The chest pain, palpitations etc continued but the rash seemed to go away.
Dan was started on Plaquenil at this time and I honestly believe that this is the medication that has helped to get rid of the rash. Dan continued with Seratide for his chest, antihistamines 2-3 times a day and Lanzoprazole to control the reflux.
Due to this short period of remission it was felt by all involved that Pollen was a trigger for Dan's illness. I now think this was wishful thinking.
When the next real big flare started, the nature of the beast had changed. The rash and itching had gone only to be replaced with much more sinister symptoms.
I had a break from note taking as I wanted Dan to feel as normal as possible. The next big flare started in the spring, but was controllable until June 2012.
DANS SYMPTOMS. (New for Summer
2012)
Dan has had increasing acid problems
and is taking Lanzoprazole 3 times a day. This had stopped following
his medication regime but has now returned. This is now helping.
For the last few days Dan has started
getting shocking pains in his head and in his left arm and hand. Very
severe shocking pain’s on the left side of his chest. He said he
thought he was having heart attacks. BP was 135 over 58. This has
started again for the last week or so.
Large veins on his right arm look
swollen and protruding close to his hand. They have been raised for
several days now.
Dan feels itchy again but has only had
a few rashes come and go very quickly.
On 18th June, Dan had to get
an early flight home from Bulgaria as following 4 mosquito bites that
evening, his throat began to swell to the point it was pressing
against the back of his tongue. He took 6 steroids immediately and
after a while the swelling decreased. He took a decreasing dose over
the next week and the swelling completely went. Does he need an
epi-pen? He said he had a sore throat just before the swelling but it
went away when he took the steroids.
June 23rd.
Dan has had severe head pains today. He
complained his head felt full of “pressure” and later that
evening we could see a large vein protruding on the left side of his
head (about 3 inches above his temple and about 4 inches long). Dan
said this is the exact spot where he felt the severe shooting pains
in his head yesterday.
The chest pain has not been as bad
today.
Dan is taking anti-histamines 3 times a
day now instead of 2 as he cannot cope on a lower dose. He is also
occasionally using the nasal spray at lunchtime as well as his eyes
start to swell.
June 29th
Dan still has shocking pains in his
head and this evening. On the left side of his head a large
vein/artery? It was swollen and protruding. It was also pulsating. I
have taken a photo. He said his head felt painful and said he could
feel “pressure in his head”.
Dan also complains of shooting/shocking
pains at the back of his jaw on both sides.
The shooting pains in his arms are
mainly on the left hand side and the veins were again swollen and
protruding. You could feel them by touching as they stuck out so
much. This seems to come and go.
Night sweats have been better since Dan
has increased all his antihistamines and sprays to 4 times a day.
2nd July
2012
Dan is now on 4 doses of anti-histamine
per day.
I have talked to Dan about other things
he is worried about. He has just told me that for several months,
almost every day before he goes to bed his tongue goes numb for 15 –
20 minutes. There is no tingling but as the numbness wears off his
mouth produces a large amount of saliva.
He has also said he gets shooting pains
in his jaw on both sides.
Evening
Dan is very wheezy tonight and says it
sounds really loud when he breathes in and his friends have commented
on this. He feels like he cannot get enough air. He has not had any
pains in his head tonight but has had shooting pains in his left foot
(this is new). His chest feels itchy and he has been having
palpitations. He has been coughing up dark mucus again which had
stopped over the winter.
BP 140/67 pulse 88.
Dan
Symptoms July 16th Onwards
2012.
After his last appointment Dan refused
to take the steroids. His symptoms got worse with a large vein on his
palm next to his thumb swollen and pulsating.
He also had what he calls a “pressure”
type headache for 6 days with shooting pains in his head.
His tongue is still going numb.
He panicked last night when he started
to get a very loud “pounding” noise in his ear and has agreed to
take the steroids.
He is still having occasional drenching
night sweats.
He had terrible chest pains again that
he described as feeling like a heart attack.
17th
July.
Dan has started the steroids.
He has just admitted that 2 days ago he
had vision problems and I think that has also scared him into taking
the steroids. He described it as black shading around the edge of his
line of vision and could only really describe it as being really
“weird”. It only lasted a few seconds and then went away.
The vein on his head has been back a
couple of times.
10.pm
Dan is complaining of aching knee
joints and pain in his shoulders. He has had continued palpitations.
He says when he lays on his back to go
to sleep they get worse and stop him from falling asleep. This is
eased if he lays on his side.
The aching all over is quite severe
tonight.
18th
July
Dan has had some palpitations today.
His biggest problem is the swollen vein
in his left hand on his palm. The pulsating is driving him mad. He
also had a strange pain that he said felt itchy and very
uncomfortable that went up the big vein in his left arm and caused
pain in his arm pit. This has not happened before.
His blow test was lower than usual
tonight but still ok.
He no longer has a headache.
The aching all over has eased today.
So far, his tongue has not gone numb
today.
21/7/12
Large vein protruding and pulsating on
Dans head again. He took 4 steroids this morning so on seeing the
vein this afternoon I made him take 2 more. His BP was 118/64 and his
pulse 104.
22/7/12
The vein on Dan's head was back when he got up this morning but went
down Ok after taking 4 steroids. He still has the swollen, pulsating
vein in his palm but it appears to be gradually going down.
Dan has complained of the loud “pounding” sound in his left ear
again but it did not last too long.
Today seems to be the first day his tongue has not gone numb.
He has had palpitations and occasionally shooting pains on the left
side of his chest.
He has not had the night sweats for a good few days now. His pulse
was down to 80 bpm tonight.
He has had a small lump come up under his chin which we will look at
again tomorrow.
23/07/12
The large vein on Dans head has returned many times today. The
pulsating is now annoying him and he says it makes him feel weird.
Dan still has the pulsating vein on his palm that is still driving
him crazy but his palm does not look as swollen today.
Dan has also started complaining of low back pain and has started
passing the orange urine again. He says it is not painful to pass
water but the back pain is a real problem. I am not sure if he should
go to the GP in case he has a urine infection but I will see how he
is over the next few days.
He took 4 steroids today as he had taken 4 yesterday. He is going to
take 3 tomorrow.
He no longer has a headache and the shooting pains in his body have
not happened today.
24/07/12
The vein is Dan’s head is not as prominent today but has stayed all
day and we can see it pulsating. He also has had a sharp pain in his
head where the vein is, although it did not last long.
The vein in his hand has stopped pulsating today.
He has also complained that he could feel a “squeezing” sensation
where he normally gets the chest pain in his left side.
The vein in his head seems to have now become a daily thing although
not as prominent.
Dan has started on 3 steriods.
25/07/12
The large vein on the left side of Dan's head is really bad today. It
is large and pulsating. Dan said last night the pain ran down from
the vein to his jaw (left side) and his tongue went numb again.
The throbbing is becoming uncomfortable and he is finding it hard to
manage.
Dan has also had aching joints today mainly knees, wrists and arms.
Knees are getting quite uncomfortable.
Dan had a couple of shooting/shocking pains in his chest this
morning.
Dan’s palm is much better today and the pulsating has stopped.
Coughs up dark brown mucus every morning.
The weather has been hot today.
Dan said his urine looked green tonight instead of orange.
Dan;s symptoms. AUGUST 2012
2/08/12
Dan helped his brother move some
furniture but this seems to cause more of the sharp shooting pains in
his head. His palms had been hurting since yesterday (his
appointment) and were worse after lifting the furniture. He later had
a headache. After speaking to Dan, trying to understand how he is
feeling (Aspergers) he says he sometimes feels like he cannot breathe
enough air in to meet his needs. This is worse after any physical
activity but can happen at rest too.
03/08/12
Today Dan has reduced the steroids to
two a day. He is suffering daily with a shooting pain down the left
side of his jaw. It hurts more when he yawns. He is now up at 2.am
with a terrible cough and a “tightening” in his chest. His blow
test was OK but it sounds like the asthma cough.
Aching all over today. He has another
headache again. He also came over feint and had to flop down on a
chair until it passed. The vein in his left side of his head has been
ok today. He had a couple of red rashes on his arms today.
4/08/12
Dan has still been feeling achy with a
headache today. He has been complaining of feeling feint several
times today, almost like he is going to black out.
I keep my blood pressure monitor set up
ready to use and as he came over feint again at 17:00. I managed to
sit him down and do his BP. At the height of feeling feint it was 210
over 121 Pulse 89. As it started to pass it was 184 over 150 and when
it had passed it was 118 over 73 pulse 95. This all happened in the
space of under 10 minutes.
The cough has subsided. Dan is still
having palpitations on and off. He looks generally unwell today. 2
steroids. He has had some pulsating that is visible on his left palm.
5th Aug.
Dan has been ok during the day apart
from a rash on the back of his neck. His breathing has been better as
he has used the inhaler Salbutamol (open airways)
This evening Dan has stabbing chest
pain pain upper left and also strange pain just under his left rib
cage. Very painful, even to touch. Dan also has pain in the centre of
his stomach.
I took his blood pressure on both arms
tonight as when the machine started tightening on his left arm he
felt strange so we had to stop for a few minutes.
Right arm 142 over 123 pulse 82.
Left arm 108 over 69, Dan has had a couple of head pains
again today.
6/08/12
Dan has been talking about the daily
palpitations he gets. He says they come on when you bend down or when
he lays down on his back at night. This often wakes him during the
night. If he lays on his right side, with his chest quite close to
the bed, this seems to stop them. Activity such as making his bed
causes a spell of palpitations. Could this be SVT? This condition has
been with him for many years but is now much, much worse. He also
notices increased episodes if he has eaten something sweet. This
seems to make the attacks much worse.
Dan has had one sharp chest pain today.
His arms (did not see his legs) has a mottled effect tonight that
looked like he had a purple fish net on them with white patches
between the purple mesh (hard to describe).The link below I found on
the internet which looks exactly the same.
7/08/12
Today has been quite a good day. Dan
still continues to have several daily episodes of palpitations which
is getting him down. He has had some sharp chest pain again today and
for the first time had the stabbing pain on the right side of his
chest as well as the left.
He still looks pale and has stated that
although he is eating lots he is not putting on any weight?
The night sweats have subsided.
The night cough still occurs and the
palpitations seems to shock him awake several times a night which is
making him very tired.
10/08/12
The last 2 days have been much the
same. One incident of numb tongue and Dan is still complaining of jaw
pain and general aches. The night cough has not been so bad.
He told me today that he is worried
about his memory and ability to take in information. He says this is
a new thing. For example He cannot remember say, an appointment time,
just minutes after being told.
The shooting pains in his head and body
have been minimal but he is still complaining of general aching.
His urine is normal colour and the low
back pain has gone at the moment. He is still on 2 steroids a day.
14/08/12
The last few days have been uneventful.
Just the usual symptoms. The vein was pulsating on Dan's head again
last night but he tends to ignore it now and just accepts it will
always be there (Aspergers!). The night cough is back and Dan was
complaining of a tight chest last night. This has been bad for a
couple of nights but the night sweats have still not returned, Dan
had a headache again last night but has decided to move down to 1
steroid. The numb tongue and jaw pain have also disappeared over the
last couple of days.
15/08/12
Today Dan has had sweaty, uncomfortable
palms. He also has a lesion at the top of his left arm that is round
and quite scaled. He said he has felt itchy today and has the white
and blue mottled marks on his arms (lots of white patches with blue
veins). 1 steroid now.
16/08/12
Dan was very chesty last night and his
blow test was ok (400) but a little lower than usual. He also started
coughing up dark mucus this morning.
The only symptom Dan has had today
apart from the mucus is a really bad shooting pain running from his
collar bone area up to his left jaw. He states the pains are very
sharp and painful and said he has not had them run up his neck
before. Usually the pain is just in his jaw. He has found this quite
distressing. 1 steroid. He still gets palpitations daily so I do not
usually mention this in his notes.
17/08/12
Dan has said he felt like he was going
to pass out several times today. He said that when it happened he
felt like his pulse was going funny and he described a tightness in
his chest that he thinks is his heart. He said he also feels a “head
rush” when he gets up too quick. This is the way Dan described it.
He is getting depressed but does not want to see his GP.
September 2012.
2/09/12
We have just returned from a two week
trip abroad. While we were away Dan had to increase his steroids to 3
a day due to increasing chest and head pains as well as general
muscle pain. The feeling he was going to pass out was happening more
and he had terrible pains in his head. He decreased this to two
steroids but has started having terrible night sweats again that wake
him at about 4.am every day. The sheets have to be changed daily as
they are ringing wet.
Tonight Dan says he feels generally
unwell, itchy on his legs and there is a red rash on a vein on his
left hand. Dan has also started getting tremors again that he has not
had for some time.
Dan has just informed me he is now
having problems with his right testicle. There is a small pea sized
lump at the bottom of his right testicle but he was too embarrassed
to tell me but the pain is getting worse so he felt he had too. He
said it now hurts if he coughs or sneezes and generally feels a
gripping sensation inside the testicle. He said he now has pain in
his stomach too which feels like pressure around his bladder.
Dan also has increasing reflux again
and pain in his gullet.
He tried to play a game of football
this week but kicking the ball caused severe pain in his feet and he
had to stop.
Dan Symptoms September 2012 (After
Consultation with Hilary and Professor Jahwad at Barts)
CURRENT MEDICATION LIST
Prednisolone. Varying amount.
Seratide 125. 2 puffs, 3 times a day.
Ventolin. 2 puffs twice a day and when required.
Hydroxychlorquine 200mg. 2 tablets twice a day.
Cetrizine 10mg 4 times a day.
Quetapine 200mg. 1 tablet a day.
Lanzoprazole, 15mg. 2 tablets daily.
Ranatadine- As required.
Zolpidem-As required.
Clonazepam-As required.
Dan did not agree to having his
testicular pain checked out. I am trying to persuade him to see GP.
Steroids have been increased to 3 per day until further notice to try
and stabilise.
07/09/12
Dan is in agony and cannot walk on his
foot as he attempted to kick a football for 10 minutes last night.
Taking Ibuprofen to manage the pain. Usual head and chest pains.
Looks unwell. Any pressure on his body, even using a finger for too
long on an object causes pain and swelling.
09/09/12
Dan looking exhausted. Terrible night
sweats have started again and Dan has been up since 4.am after
completely soaking his bed including pillow protectors, duvet cover,
sheets and his night clothes. Dan is still feeling sick and
continuing to lose weight.
23/09/12
After a good spell for a couple of
weeks being on 3 steroids Dan has started complaining again of the
faintness and has started getting very severe shooting pains in his
head. These seem much worse than he has ever had before and the pain
literally stops him in his tracks. I am quite worried about this. He
has also started having chest tightness and his breathing is not so
good so it would appear the beneficial effect of the extra steroid is
starting to wear off. The night cough is back and he is exhausted the
next day as he is not sleeping properly. Dan still has testicular
pain but is still refusing to see a doctor about it. The Aspergers
makes it very difficult to communicate to Dan how important this is.
24/09/12
Terrible day yesterday. Dan felt ill.
His chest was the main problem. He was saving trouble taking in
enough air so used Salbutamol? But this seemed to make things worse.
(Allergic?) He could not sleep due to the pain and lack of air he
could inhale. He said, in his words he felt his lungs were sticking
together. He said his body felt hot all over and he had a terrible
headache all day. This morning he looks pale and exhausted. His
Aspergers logic has told him that the only way to beat it is to not
go to bed. I have tried to explain he needs sleep, even a little to
stay strong but we will see what he does tonight.
He is becoming more depressed as he is
so limited to daily activities. He cannot kick a ball, squeeze the
button on a lawn mower etc. without pain and swelling. He is only 21
and wants to be “normal”.
26/09/12
Worse day so far. Depression has been
so bad Dan disappeared and said he needed a break for a few days.
After lots of texting he admitted the depression is now out of
control. I was concerned he intended to harm himself. He was missing
for 7 hours. He returned home and has agreed to an emergency GP
appointment tomorrow. His chest pain has been awful to the point he
felt like he was having a heart attack. The shock of it left him
shaking. He is not sleeping because as soon as he lays on his back or
side he coughs and the sound of trying to inhale prevents sleep. He
also has a vein swollen from his left wrist to his elbow where it
pulsates. He has just had enough. He has finally admitted he needs to
go back on anti-depressants. He is pale and exhausted and still
losing weight. I am now very concerned over his mental state. He was
sectioned due to depression when he was 16 so it can be serious with
Dan. He has been having shooting head pains regularly even on the
steroids.
27/09/12
Dan agreed to see the GP about the
depression. The GP prescribed Citalopram 20mg and made an urgent
referral to the Linden Centre (Psychiatric Unit) due to the severity
of his symptoms. The GP also changed the inhaler to Ventolin which
Dan said helped but I think it is actually the same medication, just
under the brand name, prescribed by Dr Longhurst.
This evening, Dan came home in a state.
He could not stop clenching his jaw, shaking, terrible pains in his
head, smoky vision and seeing dark areas in his peripheral vision,
stomach pain and nausea. He said he felt like he was going to have a
fit or something. His pupils had dilated to the point they almost
covered his iris. He said he felt very unwell.
We rushed him to A+E where they
suspected Temporal Arteris. His BP was very high and pulse going up
to 111.
Dan was admitted and they were planning
to increase his steroids from 3 to 6 and said it was an emergency
situation.
We also told them he was in agony with
his right testicle and is now unable to pass water without
difficulty. Dan still refused to be examined but they suspect a
hernia that needs urgent attention.
28/09/12
Dan absconded from the hospital without
treatment. He has Aspergers and is phobic of hospitals and could not
cope. I contacted his consultant at Barts, Dr longhurst who advised
to call the police if he did not return home very soon as he is a
vulnerable adult and his condition if not treated could cause
permanent blindness.
The hospital had security looking for
Dan but luckily he returned home although still unwell and in a
distressed state. He refused to go back to the ward so the hospital
contacted Dan's GP and Dan agreed to go there. The GP also stopped
the Citalapram in case he was having a severe reaction, even though
he has taken them regularly in the past.
Dr Longhurst advised us to increase the
steroids. (he will still only take 3)
The hospital were very concerned about
the probable testicular hernia it is assumed Dan has as the pain
level suggests it may be strangulating. This may become a medical
emergency if we cannot persuade Dan to allow somebody to examine him.
It has been explained untreated it could become a real problem but
due to Dan's Aspergers and difficulty with understanding he just
states that if he is going to die so be it as he cannot cope with
being ill every day any longer anyway. I believe his mental health is
deteriorating rapidly so the GP today has request his psychiatric
referral to now be an emergency appointment. The GP also stated Dan's
blood pressure was high.
October 2012
6/10/12
Dan still refuses to go to the
hospital. I have tried everything possible but at this point I cannot
cope with the stress any more so I have had to leave it to Dan to
come to me when he feels ready to go.
Since the suspected hernia, even though
Dan is on 3 steroids a day some symptoms are now worsening. The cough
is back and his chest is hurting him so much he has even asked for
painkillers. The black sputum is back and I am trying to persuade him
to get a sample for me.
He is also now suffering badly from low
stomach pain and looks very unwell. He is still getting shooting
pains in his head that were so disabling that he had to pull over his
car for 10 minutes until he was fit enough to drive and he had smoky
vision in his right eye briefly a few nights ago.
He is in a lot of pain after eating so
now eats very little. He also complains of low back pain.
7/10/12
Dan has now said he will go to the
hospital Tuesday. He said the pain and swelling in his right testicle
“comes and goes” (he may be playing it down to avoid hospital)
but tonight he said his right leg went numb and then he had pain
going up to his hip on the right side.
His chest is still very painful and the
cough at night is awful. The right testicle area has now
been“pulsating” for several days.
08/10/12
Dan still has a lot of pain and looks
unwell. Coughing this morning caused real agony in his testicles so
he has said he will go back to A&E tomorrow. He continues to have
bad shooting pains in his head and the night sweats have returned.
09/10/12
Dan went to A&E today and had his
tummy and testicles checked. There was no sign of a hernia or a
tumour. There was some protein in his urine. 100ml DL?
Dan had terrible night sweats last
night and soaked the bed.
Tonight, the large pupils are back
(even in bright light) and his head has been pulsating but not
hurting. Dan has a slight tremor in his legs and especially his
hips. He feels again like he is going to have a fit or something. He
refuses to go to A&E again so I have made him take 6 steroids in
total today.
Earlier this evening he had a really
sharp pain in the left side of his chest that made him cry out. His
friends were very distressed who witnessed this.
The pulsating in Dan's testicle has
been terrible today, although not as painful. I am worried about him.
He has also developed sores in the
corners of his mouth. He takes vitamin and Iron supplements everyday
so I am not convinced it is a vitamin deficiency (I have Pernicious
Anaemia) as one of them is quite large.
I took Dan's BP. Left arm was 138 over
63 with a pulse of 96.
His right arm (which has had a
pulsating vein lately) was 100 over 82 with a pulse of 121. The
monitor was very painful on this arm and made his hand hurt.
Things seem to be getting worse at the
moment.
10/10/12
Dan has taken 6 steroids again. He has
had palpitations and chest pain. There was no night sweat last night.
The nocturnal coughing continued. The large veins on Dan’s head are
very prominent tonight but he does not have a headache, Dan is
complaining of pain in his right leg. Dan looks unwell again.
BP: Left arm is 128 over 79.
Pulse 88. Right arm is 93 over 50. Pulse 93. (on 5th
August there was a similar reading in both arms Right arm
142 over 123 pulse 82. Left arm 108 over 69)
The right
arm was painful again during testing and caused his hand to hurt and
his whole arm to go pink.
His pulse has reduced on the 6 steroids
so we will continue on 6 until his symptoms improve and then start
weaning down.
11th and 12th
October. 6 steroids.
Dan had a terrible night sweat on 11th
but not on 12th. His testicle pain is easing but he is
still complaining that he is finding hard to get enough air into his
body. His heart has been racing both days and he still looks tired
and unwell.
His chest is really painful and
stopping him from sleeping.
The veins have been coming and going on
his head but there are no severe shooting pains at the moment.
21st October
Summary of last few weeks
Dan is gradually
reducing the steroids from 6 a day and is just starting on 3.
The last few
weeks have seen a continuation of Dan's Symptoms. However, the higher
dose of steroids has helped the testicular pain and the shooting head
pains. He still gets the pulsating veins on his head coming and
going.
He has had the
enlarged pupils and pulsating in his head making him feel like he is
about to have a fit and hard to think and get words out several more
times. He will not go to A&E again.
Dan's chest and
wheezing has been so bad he did not sleep for 2 nights running as the
sound of the wheeze and the constant coughing kept him awake. This
has eased but he still feels he is unable to get enough air into his
body. His blow test is however 450. He often complains that he feels
like his lungs do not work properly. He has pain in his back that may
be caused by the coughing?
Night sweats
come and go but are less frequent at the moment.
A big problem is
chest pain. Dan still gets the shocking pain on the left of his
chest. He has palpitations every day and has now developed a new
pulsating in the centre of his chest that feels like somebody is
constantly poking him in the chest. He finds this hard to cope with.
He says it feels like his heart “hurts”.
Dan is still
having problems with his bladder. He often has problems passing urine
during the day and then has to get up several times in the night
needing to go.
Dan is depressed
as he has “had enough” of feeling unwell every day. We now have
emergency appointment with The Linden Centre Psychiatric Unit on 16th
November.
22/10/12
Dan has weaned
down to 3 steroids.
23/10/12
Dan did not sleep much last night due to his coughing.
Dan had complained of a severe headache this afternoon which was only
relieved by strong painkillers.
This evening he was at his friends when he started grabbing his head
and could only make stuttering noises when he tried to speak. He was
sweating at the same time. His friend contacted me and we got him
home and he took 6 steroids. He said his top lip was
tingling and he has hurt his teeth by clenching his jaw while this
incident was happening. He would not go to A&E.
A good half an hour after he had problems remembering and could not
take in what I was saying to him to answer questions. All he could
say was that he felt like he was going to pass out or have some kind
of a fit? I am very concerned about this.
Left BP 145 over 79 pulse 97 and right BP 153 over 74 pulse 95. (This
was taken an hour after the event). An hour later he had another
sharp pain in his head and felt like he had been “tasered” down
his left side. He said this only lasted a few moments.
He had just gone down to 3 steroids last night and does
not want to stay on 6 so he said he will take 5 tomorrow. We are
running out so I will have to get a quick prescription from the GP.
The bladder problems are continuing also.
This is the message Dan sent to his friend from home later in the
evening:
“That's
ok lol. I have never felt like that b4. Felt like I was gonna just
pass out or somink. I'm so fed up with it all. Wish it would just
hurry up and give me a stroke and die lol. Its so frustrating its
unreal. I'm just watching tv for half hour then gonna go bed. Wuu2? X
24/10/12
Dan has been
tired but no incidents today. 6 steroids tonight.
25/10/12
A much better day. The coughing is slowing down and he has got some
sleep. He is still coughing up mucus speckled with “dark brown”
and has promised to try and get a sample.
5 steroids tonight.
26/10/12
A reasonably good day. The nocturnal cough eased a lot last night and
apart from a “weird pulsing” in the centre of Dan's chest and
sharp pain at the top of his back (between his shoulder blades) today
has been unremarkable.
5 steroids tonight.
27/10/12
Dan has still been having central stabbing chest pain today. He says
his heart sometimes jumps and does a few really big beats that feel
different to the usual palpitations. Tonight, he had a severe pain on
the top of his head. It lasted a couple of minutes. He said he put
pressure on the area which helped to reduce the pain. The nocturnal
coughing is much better.
5 steroids tonight.
28/10/12
Dan is still finding it difficult to get enough air. He sounds wheezy
although his blow test is 400. He has not had any head pain today but
is still having stabbing pains in the centre of his chest.
4 steroids tonight.
29/10/12
Dan has been OK today. He has had the usual palpitations and chest
pain but overall an unremarkable day.
4 steroids tonight.
30/10/12
Dan is having severe stabbing pains in his right lung. The pain has
spread up his side and back. The pain has been awful. Dan's blow test
has dropped to 250. He describes the pain as sharp pain which gets
worse when he breathes in. The nocturnal coughing is starting to
return. Dan has palpitations on bending down again. He has had a
shooting head pain again.
His symptoms seem to be returning as he is lowering the steroids.
4 steroids tonight.
31/10/12
Dan is still having pain and says he finds it hard to get enough air.
His blow test was down to 250/300 again. The nocturnal cough is
returning.
4 steroids tonight.
November 2012
1/11/12
Dan has had terrible shooting pains in the same spot on the left hand
side of his chest today.
The pain has been so intense it makes him cry out.
His blow test is still around 300 and Dan's cough is getting worse.
He looks pale and tired today. He had a bad headache most of last
night although it has eased off during today. (5.pm)
More chest pains this evening and pain in his lower back. Dan also
has a headache again.
4 steroids tonight.
2/11/12
The same problems. Head and chest pain but coughing not been too bad.
4 steroids tonight.
3/11/12
Dan had pulsing in his head and chest followed later in the evening
with a head pain that was so intense he could not drive his car and
had t get a friend to take over.
4 steroids tonight.
4/11/12
Similar symptoms again today. Shooting chest pain and the pain
stabbing in the same place. The vein on Dan's head pulsated during
the day and he had shocking pain later in the day.
Dan is too scared to go lower than 4 steroids as this is when the
problems seem to start.
4 steroids tonight.
5/11/12
The nocturnal coughing has eased and so have the night sweats.
However the head and chest pains are very bad and very distressing
for Dan.
4 steroids tonight.
6/11/12.
This morning Dan had to pull over in his car as he had really bad
chest pain and became dizzy. This dizziness lasted about 10 minutes.
The shooting head pains continue. Every day seems the same now and
there is no overall improvement regarding his head and chest. Dan
does not feel able to reduce to 3 steroids as he is only just coping
on 4. We are very worried about his head pain and the effect on him
when he suffers an acute burst of pain. This is now making some
activities dangerous as Dan cannot predict when this or the dizzy
spell will start.
4 steroids tonight.
This has been a hectic week.
Dan went to see his consultant on Wednesday. She is concerned by the TIA's (mini strokes) Dan is having. He is also suffering terrible chest pains and dizziness etc.
Hilary has decided to start Dan on Imuran. This is a drug that will suppress his immune system and become his 9th daily medication.
He is having the initial blood test done to see if he can tolerate it and then we will be given the go ahead to start.
It is clearly not good for somebody so young to be on this type of drug but we need to reduce the steroids due to the damage they can do. It has to be better than a full blown stroke. Hilary, our consultant said she would like this drug started alongside his other meds to prevent " permanent damage".
As soon as we get the go ahead from her we will start.
Fingers crossed that nothing happens in the meantime.
This has been a hectic week.
Dan went to see his consultant on Wednesday. She is concerned by the TIA's (mini strokes) Dan is having. He is also suffering terrible chest pains and dizziness etc.
Hilary has decided to start Dan on Imuran. This is a drug that will suppress his immune system and become his 9th daily medication.
He is having the initial blood test done to see if he can tolerate it and then we will be given the go ahead to start.
It is clearly not good for somebody so young to be on this type of drug but we need to reduce the steroids due to the damage they can do. It has to be better than a full blown stroke. Hilary, our consultant said she would like this drug started alongside his other meds to prevent " permanent damage".
As soon as we get the go ahead from her we will start.
Fingers crossed that nothing happens in the meantime.
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