Narcolepsy

Recently Steven has been complaining of being extremely tired, not able to concentrate and focus, he is worried about losing his job

Narcolepsy Isn’t Like the Movies: 16 Secret Signs of Daytime Sleepiness

We all know the punch line of the narcolepsy joke – person falls asleep while standing or in the middle of the conversation. My daytime sleepiness doesn’t look like this. On the surface, it doesn’t look like much of anything.

Internally – my sleepiness aches. My limbs become heavy and pressure pushes on my skull. Over 15 minutes or so, I lose my ability to process thoughts and communicate (described best here). Sometimes I do eventually fall asleep. Other times, I snap out of it randomly and return to myself.
Externally - my sleepiness is fairly undetectable. At it’s worst – friends have reported that I seemed “subdued,” “quiet,” “annoyed” or “dazed.” While I’m experiencing utter cacophony internally – I look “subdued.”
Daytime sleepiness manifests in other ways that we may not associate with sleepiness.
Narcolepsy’s sleepiness can appear as poor mood regulation such as irritability, mood instability and a less positive mood. It can also appear as behavioral issues like internalizing or externalizing (aggressiveness, hyperactivity and impulsivity). Likewise, daytime sleepiness can show as neurocognitive deficits – problems with attention, organization, self-monitoring, planning, memory and verbal creativity. Over time, daytime sleepiness can manifest as poor academic functioning, social impairments and family dysfunction.

16 secret signs of daytime sleepiness:

1. Irritability
2. Mood instability
3. Less positive mood
4. Internalization
5. Aggressiveness
6. Hyperactivity
7. Impulsivity
8. Attention deficits 
9. Organization issues
10. Self-monitoring deficits 
11. Planning issues
12. Memory problems
13. Verbal creativity deficits 
14. Poor academic functioning
15. Social impairments
16. Family dysfunction

I recently attended a presentation by Dr. Judith Owens highlighting these manifestations of daytime sleepiness in children. Although perhaps exaggerated in children, I believe these signs apply to narcolepsy at any age.
These not-so-obvious signs of sleepiness are helpful for diagnosis. They can also help people living with narcolepsy recognize daytime sleepiness in their everyday lives, because once diagnosed, treatment and lifestyle changes may improve sleepiness but are unlikely to erase it.
For me, irritability, aggressiveness and fidgeting are huge signs. Blaming narcolepsy doesn’t make this behavior “okay” or excusable, but acknowledgement is the first step toward change. Discussing with loved ones will allow us to work together to put moodiness to bed. Literally.
Of course, moodiness isn’t always sleepiness in disguise. Hunger manifests as moodiness often. And sometimes moodiness is plain ol’ moodiness!
In closing, sleepiness is more than nodding off in one’s soup bowl. Sleepiness is as invisible as insulin levels in diabetics, but without objective tools to measure sleepiness yet, we must do our best to subjectively recognize it. In a sense, sleepiness is like a soul – floating around undetected, only seen when it takes shape in a body (like in our mood, behavior or performance).

Steven heard from Papworth

Steven had a call from Papworth today from a member of Dr West's team.

He asked questions about how he was feeling, when did he have his operation, and other information.

He expressed concern that the valve could be too small, and is going to track down all Stevens record from Great Ormond Street and Queen Elizabeth, and will keep monitoring which is good.

Steven still not well

Since Steven has come out of hospital he has not been well

He is diagnosed with non iron defiency Aneamia.

Symtoms include

Lethargy
Tiredness
Lack of concentration
Cannot formulate sentances properly
Restless at Night
Falling asleep at odd places and at odd times and then cannot be woken up.

Today he saw Dr Summers who has scheduled several blood tests for tomorrow, Steven is to go back for the results on Tuesday.

The Dr said the the symptoms seem to indicate the Spleen producing too many blood cells which may affect his heart valve.

What is the spleen?
The spleen is an organ about the size of a clenched fist found on the left-hand side of your upper abdomen. Its main functions are to filter your blood, create new blood cells and store platelets. It is also a key part of your body's immune system.

Where is the spleen found?
The spleen is found on the left side of your body, behind the stomach on a level with the 9th to 11th ribs. It is similar in structure to a lymph node, and is the largest lymphatic organ in the body. The spleen containstwo main types of tissue - white pulp and red pulp. White pulp is lymphatic tissue (material which is part of the immune system) mainly made up of white blood cells. Red pulp is made up of venous sinuses (bloodfilled cavities) and splenic cords. Splenic cords are special tissues which contain different types of red and
white blood cells.

What does the spleen do?
Blood flows into the spleen where it enters the white pulp. Here, white blood cells called B and T cells screen the blood flowing through. T cells help to recognise invading pathogens (germs - for example, bacteria and viruses) that might cause illness and then attack them. B cells make antibodies that help to stop infections from taking hold.
Blood also enters red pulp. Red pulp has three main functions:
It removes old and damaged red blood cells. Red blood cells have a lifespan of about 120 days. After this time they stop carrying oxygen effectively. Special cells called macrophages break down these old red blood cells. Haemoglobin (a chemical which carries oxygen) found within the cells is also broken down and then recycled.
Red pulp also stores up to one third of the body's supply of platelets. Platelets are fragments of cells circulating in the bloodstream that help to stop bleeding when we cut ourselves. These extra stored platelets can be released from the spleen if severe bleeding occurs. While the spleen performs a number of important functions, it is not essential to life. Other organs such as the liver and bone marrow are able to take over many of its jobs. Your spleen may be removed (splenectomy) for various reasons - for example, because of an illness that affects the spleen, or if it is damaged by an injury. Also, the spleen may not work well in some diseases - for example, sickle cell disease, thalassaemia, and lymphomas.
However, people who have had their spleen removed are more likely to get infections and may be put on long-term antibiotics to prevent this.

Steven at Doctors

Today Steven went to the Doctors and he gave him a sick note for 3 months.

Steven has been told he is aneamic. Normal levels are 12 and Steven is 10, coincidentally Debbie has just been diagnosed with Aneamia with exactly the same levels.  Steven has got to go to the hospital to have a camera down to make sure there is no internal bleeding.

Anaemia is a condition that develops when your blood does not contain enough healthy red blood cells. These cells are the main transporters of oxygen to the organs in your body. Symptoms of anaemia - like fatigue - occur because your organs aren't getting enough oxygen.

10 on the anemia scale means a few different things; that you are below range with a Hgb of 10, indicating anemia, classed as a grade 1 borderline mild to moderate anemia, you are pulling from your iron stores (ferritin) in the bone marrow and organs. All of which is corrected with iron IF this is due to a straight forward simple (IDA) iron deficiency anemia.

Steven Davies is famous

Steven Davies is a suspect CSI: Miami episode invasion :) lol.

CSI: Miami: Season 2, Episode 16

Invasion (23 Feb. 2004)

A masked man breaks in and trashes a house before shooting the father. The son is later found by the CSI team in a freezer.

	David Caruso	...	Lieutenant Horatio Caine
	Emily Procter	...	Calleigh Duquesne
	Adam Rodriguez	...	Eric Delko
	Khandi Alexander	...	Dr. Alexx Woods
	Rory Cochrane	...	Tim Speedle
	Sofia Milos	...	Detective Yelina Salas
	Lindsay Frost	...	Joanne Henderson
	Vincent Ventresca	...	Joseph Zellar
	Douglas Smith	...	Jason Henderson
	Todd Stashwick	...	Steve Davis

 

 

Salt 'N' Shake

All the time Steven was in hospital he complained about how ill treated and abused he had been as a child - the reason - because the advice of Doctors was that he should be on a low salt diet, so i bought him Salt 'n' Shake crisps and removed the little blue packet of salt - apparently that is child abuse.  Tonight i presented him with a packet of Salt 'N' Shake Crisps, as he obviously had missed them :)

The original Salt n' Shake

Salt 'N' Shake Now

Steven is Home

On the 16th August Steven was admitted to Queen Elizabeth Hospital in King's Lynn, he was diagnosed with Endocarditis, an infection of the heart valve.  After antibiotic care in the Hospital, the decision was made to transfer him to Papworth Hospital, in Cambridge, to assess the condition of his heart valve and maybe replacing it if necessary.

Today after 6 weeks in hospital Steven was eventually discharged in spite of reluctance from the registrar because his INR was so low.

Steven will have to self administer Clexane, and have to have blood tests taken every other day, in about 2 weeks time Steven will have to have another blood culture done to make sure there is no infection,  Steven has to take care in case of a secondary infection.

Steven Update

Steven has seen the surgeon this morning, they have decided not to operate because the infection seems to have almost cleared up, and his valve is in good condition, his course of antibiotics finish on wednesday and on wednesday he is seeing the cardiologist to sign him off, so he could be home on Thursday, when he gets home he will have to take care for several weeks because there is a risk of a secondary infection.

Papworth Visit

After work today we collected Jude and went to visit Steven in Papworth for the first time, it was an easy journey, with no problem, finding our way round Papworth was interesting but we made it.

This was not a happy visit, Papworth is not a nice hospital, very dated, the staff are good and the food is an improvement on King's Lynn, but the environment itself was very poor and dated and didn't look very hygienic.

Other causes for concern was Stevens test result haven't been sent from King's Lynn, and won't arrive till beginning of next week, most frustrating and disorganised to say the least.

The surgeon is also not happy with the risk involved in the operation, because it is rare to replace a replacement mitral valve there is very little information available, thus the risks are quite high.  Once the results arrive and the surgeon can study them, he might be able to make an informed decision about the treatment plan, but we continue the waiting game :(

Steven has been put on a new antibiotic Teicoplanin, which believe it or not was the anitbiotic tested on the culture taken, so why wasn't that the one he was put on ugh

Teicoplanin is an antibiotic used in the prophylaxis and treatment of serious infections caused by Gram-positive bacteria, including methicillin-resistant Staphylococcus aureus and Enterococcus faecalis. It is a glycopeptide antibiotic extracted from Actinoplanes teichomyceticus, with a similar spectrum of activity to vancomycin. Its mechanism of action is to inhibit bacterial cell wall synthesis.
Teicoplanin is marketed by Sanofi-Aventis under the trade name Targocid.
Oral teicoplanin has been demonstrated to be effective in the treatment of pseudomembranous colitis and Clostridium difficile-associated diarrhoea, with comparable efficacy with vancomycin.^[1]

Papworth

A month = 4 weeks after being admitted to Queen Elizabeth Hospital, King's Lynn Steven was transferred by Ambulance today to Papworth Hospital, Cambridgeshire.

Steven is on Hugh Fleming Ward.

We were hoping for a TOE today, but no such luck, so still playing the waiting game.

It Still goes on

Yesterday Steven had 3 teeth out, be glad when that is all done.
We had Miles and Charlotte overnight.

On Sunday evening Jenny started getting terrible pain in her left knee, yesterday she stayed upstairs because she could't walk, last night Andy rang, for advice, i told him to put her on Nurofen and massage into her knee some cream, if no better this morning she needs to go to the doctor.

She went to the doctor this morning and they took a blood test and told her she had Inflammatory Arthritis, she should keep trying to move it and if the pain gets too bad keep it raised.

The inflammatory arthritis pathway

Inflammatory arthritis is a term used to describe a group of conditions which affect your immune system. This means that your body’s defence system starts attacking your own tissues instead of germs, viruses and other foreign substances, which can cause pain, stiffness and joint damage. They’re also known as autoimmune diseases. The three most common forms of inflammatory arthritis are:

• rheumatoid arthritis 
• ankylosing spondylitis 
• psoriatic arthritis 

These conditions are also called systemic diseases because they can affect your whole body. They can happen at any age.
There’s no cure for these diseases at the moment, but the outlook for those diagnosed with inflammatory arthritis is significantly better than it was 20–30 years ago. Effective treatment begins much earlier and new drugs are available, which means less joint damage, less need for surgery and fewer complications.
Inflammatory arthritis isn’t the same as osteoarthritis, which happens when the cartilage in your joint wears away.

Steven Update

Bob has took Jude to the hospital today because of my training, it looks like Steven will be going to Papworth on the 19th September, he is down, fed up and depressed and one of the reasons is that the hospital is not communicating with him.

Disappointing Day

Steven had hoped to get out of hospital to surprise Jude by going to Pizza Hut tonight, but Dr Kumar wouldn't agree so it didn't happen.

Steven was very disappointed and depressed tonight, he is very anxious about the coming days and weeks.

CRP Levels

Stevens CRP levels are down to 37 from level 66 on the 6th September, they are hoping it keeps dropping at this level.

Papworth Referral

Steven was informed by Dr Kumar this morning that Steven was being referred to Papworth, unfortunately they couldn't get hold of me, so when i found out i tried to ring Steven unsuccessfully, then remembered he probably was having dental treatment.

In the end i decided to ring the ward and have a lovely chat with Dr Richard Marsden, he explained although Steven is on very strong antibiotics, they have reached a plateaux where the infection markers aren't getting as low as they expected, which means they are seeking advice from Papworth about whether a replacement valve is necessary.    We should hear their response shortly.

Low Blood Pressure

Steven seemed very tired and lethargic today, this often is the case the day after he has seen Miles. 

There is also concern that his blood pressure is low

Hypotension is the medical term for low blood pressure (less than 90/60 mm/Hg).

A blood pressure reading appears as two numbers. The first and higher of the two is a measure of systolic pressure, or the pressure in the arteries when the heart beats and fills them with blood. The second number measures diastolic pressure, or the pressure in the arteries when the heart rests between beats.

Normal blood pressure is usually in the range of 120/80 mmHg (systolic/diastolic). In healthy people, especially athletes, low blood pressure is a sign of good cardiovascular (heart and blood vessel) health. But low blood pressure can be a sign of an underlying problem - especially in elderly people - where it may cause inadequate blood flow to the heart, brain and other vital organs

Tiring Day

Well today, i had a day a work for AgeUK, and did my Dersingham customers, everything went well with no problems.

Then i went to see Steven, Dr Kumar said that he is about half way through his treatment, his consultant is talking to papworth about if and when his valve needs replacing, because as the infection is attached to artificial valve and it is non organic, they do not think it will clear up 100%, but this could be future plans not immediate plans.

I feel so tired and exhausted emotionally and physically.

Steven Update

Steven Text me today to say his CRP levels are high and are cause for concern

Measuring your C-reactive protein (CRP) levels can help in assessing your risk for heart disease.
Elevated CRP is associated with an increased risk for cardiovascular events, such as heart attack and stroke. Whether CRP actually causes the increased risk or is just a marker for it is still not known - but now we do know that treating people who have high CRP levels with statins can reduce their risk. This fact alone makes measuring CRP worthwhile in many individuals.
CRP is a protein that is released into the bloodstream during periods of inflammation. Since atherosclerosis¹ (the process that forms plaques in the arteries) is now thought to be at least partly an inflammatory process, it makes sense that CRP levels might be elevated during periods of active plaque formation, and that high levels of CRP would correlate with cardiovascular events.
CRP is measured using a high sensitivity test (called the hs-CRP blood test). In general, the higher the hs-CRP level, the higher the risk. Levels of hs-CRP below 1 are considered low; levels of 1 - 3 are considered moderately elevated; levels greater than 3 are considered high. Levels greater than 10 are usually only seen with active, obvious inflammatory processes, such as severe infection, major trauma, or chronic inflammatory diseases - these ultra-high levels cannot be used to interpret cardiac risk. Because CRP levels can fluctuate over time, most experts now recommend measuring 2 CRP levels a few weeks apart, and averaging the two values.

Steven's CRP is infection Marker 85which is apparently acceptable.

Steven also had a tooth removed today.

Had a text to say they had run out of his Antibiotic, incredible, he eventually got his antibiotic 10 hours late

Latest News

Yesterday when visiting Steven, he was bubbling and cantankerous and being a nuisance, up to his usual self, trying to escape.

We had Miles overnight whild Jude worked and he was very good.  This morning i ran Junior Church and we worked on Night and Day and the creation. Then we all had a Roast Dinner, and while mum had the children, me and Jude went to the hospital.

Steven was not quite as bright today, he looked and felt weary, however, he is now eating which is good.

This evening Steven's INR was very low, so he has to be on Clexne tonight.

Clexane injection contains the active ingredient enoxaparin, which is a type of medicine called a low molecular weight heparin. It is used to stop blood clots forming within the blood vessels.

Tonight i watched

X Factor

Series 9 - Episode 3

Gary Barlow, Nicole Scherzinger, Tulisa and Louis Walsh continue their tour of six major cities, giving their verdicts on another line-up of would-be chart stars, from genuine hopefuls to the completely hopeless. Mel B joins the panel in Manchester and Anastacia is a guest judge in Glasgow as hundreds of hopefuls try to prove they have what it takes to be the next pop sensation. The judges have already spotted some great potential this year, such as songwriter Ella Henderson and shy supermarket worker Jahmene Douglas, while other contestants have entertained for all the wrong reasons. Dermot O'Leary offers words of encouragement backstage as well as a shoulder to cry on for those who fail to impress.

Inspector George Gently

Series 5 - 2. Gently with Class

2/4. Ellen Mallam is left to drown in an upturned car by its driver, but the young woman's connection to James Blackstone, an aristocratic family's heir apparent, impedes Gently and Bacchus's investigation. The chief inspector discovers that the son's future has been carefully mapped out since birth by his implacable mother Alethea, and she will not countenance any interference in her plans. However, an astonishing twist causes the detectives to reconsider the case in its entirety. Sixties-set detective drama, starring Martin Shaw and Lee Ingleby, with Geraldine Somerville, James Norton, Roger Lloyd Pack, Christopher Fairbank and Ebony Buckle.

Birthdays Birthdays

We celebrate 2 birthdays today, Jenny's and Miles

After work, we went to Jenny's, should have gone for a BBQ but i was late leaving work, so they had one without us, but we spent an hour at Jenny's and had a drink with them.

Then i went and picked up Jude, Miles and Charlotte and we went to the hospital, where we went to see Steven, Kira was also there, luckily Steven was feeling a little better, Miles opened some Birthday presents with his daddy, and we had some birthday cake.  After 15 mins Jude and Charlotte took Miles downstairs so as not to tire Steven, while i spent time with Steven, then i went downstairs and took over and Jude saw Steven.  It seemed to work rather well.