Cheryl & Charlotte (aka Charlie)

My daughter Charlotte was born in 1988 following an extremely traumatic and severely delayed delivery, following which she was diagnosed with Severe Learning difficulties.

Despite this and her poor mental and physical prognosis, we worked her extremely hard with intensive therapies and managed to get her to walk at 5 years old and she had a very happy and full childhood until she started having seizures at around age 16. We don’t know what triggered this, some have said puberty, but she also had 3 nasty falls at school suffering broken jaw and bangs to the head each time, which could have also caused seizures to start.

At first, we weren’t sure what was even happening as initially the first seizure looked more like a panic attack. She had just 3 seizures the first year, but these gradually worsened and became much more frequent, until now she has one every 3-6 days.

She has them upon waking/sleeping in the night/early morning and often also if she is unwell and falls asleep during the day. Following a seizure, she is very distressed, crying and tired and unable to function at all the next day, and has to go back to bed. This can last up to 7 days.  Quite often she has another fit before she has fully recovered so this makes her recovery period even longer.  She usually goes to a day care centre which costs £100 a day for her, which is wasted money as she regularly is far too unwell to attend.

She has gone from being a happy, sociable, laughing, inquisitive, “naughty little moo” into a very sick young girl whose life is becoming hardly worth living for a big part of it.

It is horrendous for me having to perpetually watch her when she is sleeping via a video monitor.  Charlotte also has a tracheostomy tube following damage to her airway during spinal surgery when she was 12yrs and then a total laryngectomy following a Botox blunder in her salvia glands 7 yrs ago, so she has no voice box and cannot make any sound, therefore, I have to have the sound up on the monitor full blast and listen to every sound she makes so I can hear when she is having a seizure. This means that every time she signs in her sleep or moves an arm etc, it wakes me up and I have to investigate, so my sleep is perpetually interrupted. I am totally exhausted, and life is pretty crap for both of us.  I am divorced from Charlottes father and am sole breadwinner for us, I do not claim or receive any state benefits at all and this life style is severely impacting on my ability to continue to work, let alone have any kind of social life.

Her seizures start off with a sudden rigidity, severe stiffness and arching her back, which is spite of her metal rods, looks like it will break, she then starts shaking violently.  During this time, she is unable to breathe, and eventually loses consciousness.  I have to stay with her during this time.  When the seizure starts to abate, she will continue to have tremors that can go on for over ½ -1hr, sometimes 4+ hrs.  She will then fall into a very deep semi unconscious sleep and cannot be woken for 3-4hrs.  If this happens when we are at her day care etc its almost impossible to move her and requires an ambulance etc to help out.

Charlotte has tried most of the Anti-Convulsant Medications, inc Carbamazepine, Tegretol, Epilim, Fycompa, Lacosamide, Keppra and Clobazam.  The Keppra, which we were on for about 6 years turned her into the child from hell and kept her awake almost 24/7, we had several major near death misses where she got trapped in her bed guard in the early hours of the morning due to being awake half the night on the Keppra, I was finally woken up due to the sound of the bed guard rattling when she was in her death throws!  Once again I had to deal with all of this single handed as well as try to work. She was agitated and very distressed most of the time.  My complaints that this behaviour was caused by the Keppra were dismissed, however I was proved right when we finally took her off this horrendous drug.  Just check out most Epilepsy forums and a huge number of other people all complain about the Keppra mood changes!  Other drugs have caused her gums to disintegrate and the nerves of her teeth are exposed and very painful.  She also has liver issues due to these drugs and has to have regular blood tests to monitor this which is in itself very traumatic as we have to go to hospital each time as its nigh on impossible to get blood out of her, and usually takes 6-8 stabs with a needle.  

In the last 5 years, she has developed spasticity in her feet and achilles tendons which we believe is either caused by the AED meds or the brain damage caused by the repeated seizures.

Charlottes is at high risk of SUDEP (Sudden Death in Epilepsy) due to the seizures being nocturnal, uncontrolled and that she stops breathing during her seizures. 

We tried to get on the GW Pharmaceuticals Epidiolex trial 2 years ago, but it was being run in conjunction with the AED Clobazam which we were not using at that time, so were not allowed to participate, however all the patients our Neurologist put forward for the trial were seizure free during it.

We recently purchased some Charlottes Web Everyday Advanced CBD oil after seeing the documentary on Charlotte Figi, (and many other children) whose seizures were stopped using this oil.  After starting slow and low as instructed, her seizures did become far less, as we were able to go 10/11 days between them, however due to stock/supply issues in the UK, we kept running out and had to keep starting from scratch again each time we managed to obtain another bottle.  At £300 per bottle which I have to fund out of my own pocket, to keep having to start again due to supply issues, made this an unacceptable solution.  We had reached quite a large dose of CBD at 1.25ml 3 x daily but our feeling is that she will require a very tiny amount of THC as well as CBD such as the Tilray or Bedrocan varieties.

Even if the oil does not completely stop her seizures, it is quite obvious to us and all of her carers that her recovery is so much better whilst on the oil.  She is no where near as distressed and is a lot calmer and happier following the seizures.

I have written and requested her Neurologist to apply for a license for her to have medicinal cannabis oil on prescription, but as yet have not received an answer.

I also have triplet sons of 25yrs who have all now left home, I have always ensured that they could live a normal life and not be too effected by her difficulties.  Charlotte will always remain at home with me.  She will be 30 in November, and her quality of life is severely deteriorating due to her seizures and the awful medication that she has to take to TRY to stop her seizures, which doesn’t work anyway but poisons her body instead.  Her ability to function on any level together with her mobility and independence is failing badly.  She now requires 2 full time carers to assist her walking and every need, and we will soon need to equip and adapt the house with everything for someone who lacks any mobility whatsoever.  It will cost the NHS and state far more in the long run than the cost of prescribing medicinal cannabis oil for her.

Cheryl Keen

See Cheryl & Charlotte in The Telegraph

 

BASIA ZIENIEWICZ