Family Weekend 2012 - Hilton Hotel Warwick
Preparations for the 2012 Family weekend began almost as soon as the trustees had recovered from the previous one. Speakers have to be approached well in advance before they are booked up; the same applies to the venue and the crèche company.
Eventually everything came together and we set up and waited for the first people to arrive. This year is slightly different to other years because more of our members have joined the Facebook group. Even though people may not have met face to face it almost felt as though we knew each other and we were looking forward to meeting in person.
Lisa and I set up our stall with the goods we would be selling and the collection boxes with the lovely new pictures of Isaac Stimpson on them. Lisa also tried to make me understand her very efficient ordering system! Pam and Alan set up their Christmas card stall next to us and we were ready to go. Unfortunately, Tracey Hattley who had information on transition and funding for independent living couldn’t make it as her car decided to break down at the last minute but we also had a stand with many different information leaflets for people to take so at least we could offer some information.
As people drifted in we found ourselves looking at each others’ name badges to confirm it was who we thought it was. It was lovely to see the newest members who were there for the first time with their little ones and, for me, to see members who had been at the first family days when the group first began. People chatted to each other over a cuppa and a cream cake and the children played together and shared their toys with hardly any incidents!
The afternoon flew by and before long we had sold lots of wristbands and trolley tokens and Lisa had orders for clothing. Pam and Alan had sold a huge amount of their stock of Christmas cards and notelets. Everybody eventually drifted off to their rooms to refresh themselves for the evening meal.
The evening events began with an entertainer for the children who all seemed to thoroughly enjoy it (along with a few parents)! People mingled and chatted over a drink and Greg handed out his quiz sheets, of which there were three for each table. Some of us however, abandoned the quiz when the food was ready. It had been a long day and we all needed some food, not to mention dessert! During the evening everybody sang Happy Birthday to Abi, Olivia’s sister and she blew out the candles on her cake, she was thrilled with all of the attention. We were also presented with some fantastic cheques from fundraising which people had done for the group.
We had been given so many lovely raffle prizes so we split the raffle into a children’s and adults raffle. Sophie and Caity did a great job of selling raffle tickets and sold over £500 worth on the night. The girls also took turns at calling out ticket numbers and we had a long queue of other children all waiting to choose a ticket, they all loved being involved.
Sunday morning arrives and the dining room is full of Sturge Weber members and from what I could see, all of the children were behaving beautifully.
After breakfast the children were sent out on their trips or settled in the crèche and people helped themselves to refreshments and chatted while the screen was set up.
Dr Sarah Aylett
Our first speaker of the day was Dr Sarah Aylett Consultant Paediatric Neurologist paediatric from Great Ormond Street Children’s Hospital London. Many of you will already know Dr Aylett through the Sturge Weber clinic held at GOSH. The Sturge Weber clinic has been able to double the capacity of children seen since 2011, now offering 10 appointments a month instead of 4, In Oct 2011 the team was also joined by Tracey White a Clinical Nurse Specialist. Dr Aylett was asked to cover 3 key issues all of which can be related to Sturge Weber Syndrome; sleep, reflux and aspirin.
Sleep disruption (insomnia) can be very common with neurological conditions such as Sturge Weber Syndrome, especially for those who have a learning delay or ADHD. Some may find it difficult to feel tired or get to sleep and some suffer with not being able to stay asleep for the normal period of time. The main cause for this is because the brain isn’t producing enough of the natural hormone Melatonin which upsets the natural circadian rhythm which is how sleep works. Dr Aylett explained ways to approach and encourage a better sleep pattern, sleep routine plays a huge role so try and create a bed time routine and do not allow any naps during the day. Try to encourage children to sleep on their own and reward for good behaviour. Exercise increases our Melatonin level which then improves the natural circadian rhythm. Reduce the daily sugar intake and no sugary drinks such as juice, fizzy, milk, hot chocolate or any drinks containing caffeine such as tea and coffee at least 4 hours before bed. Light through the eyes stimulates the Suprachiasmatic Nucleus which reduces the natural melatonin, dark will increase melatonin levels so to help increase it in the summer months use darkened curtains or blinds to shut out the light, avoid all electronics and television before bed too.
Medication can be prescribed to reset sleep time, a natural dose of Melatonin can be given orally it has been reported that it has found to be very effective in helping to get to sleep but not as effective in helping to stay asleep.
Dr Aylett reported that from a study carried out on children with Neurological Developmental Disorder and suffering impaired sleep, on average, the time taken in getting to sleep was decreased by 60 minutes with the use of Melatonin. Chloral Hydrate can also be prescribed but this medication is not recommended to be used daily, it is very effective because of the sedative it contains. The dosage is worked out on body weight and has a sedation time of 4 - 6 hours. Vallergen has also been used as a sedative but less often than Choral Hydrate. Dr Aylett also spoke about "parasomnias" such as rapid eye movement (REM), sleep starts (jerking whilst asleep) and even teeth grinding or head banging, she explained that parasomnias are not seizures.
Reflux difficulties, also known as Dysphagia are usually a mixed disorder caused by a combination of structural abnormalities, neurological conditions, cardio respiratory problems and behavioural issues. A multidisciplinary approach utilising the expertise of speech and language therapists, occupational therapists, dieticians, otolaryngologists, psychologists, neurologists, surgeons, and gastroenterologists could be necessary. Gastro Oesophageal Reflux is also common in neurological and physical disorders it can cause pain and discomfort. A PH study can detect the amount of acid present and medication such as Omeprazole / Lansoprazole can be given to reduce the acid if problems persist. When the muscle is either weak or relaxes inappropriately a Fundoplication surgical technique that strengthens the barrier to acid reflux when the sphincter does not function normally can be carried out.
Dr Aylett finished on the last topic on the benefits of Sturge Weber sufferers taking aspirin. She explained it is taken as a daily dose and recommended to prevent clotting and to reduce the stickiness of the blood.
MRIs have proven where aspirin has been used that the blood is able to flow efficiently keeping a better regulation of the venous veins in the brain and allowing the oxygen to be delivered correctly.
Sarah Aylett reported that 20 children with Sturge Weber syndrome were reviewed before using aspirin. 119 stoke like episodes were reported during that period and after taking a daily dose of aspirin (1-2 mg per kilo) body weight these ‘stroke like’ episodes reduced by 65%.
Professor Simon Baron-Cohen
Our second speaker was Simon Baron-Cohen a Professor of Developmental Psychopathology in the Departments of Psychiatry and Experimental Psychology at the University of Cambridge. He is the Director of the University's Autism Research Centre and a Fellow of Trinity College. He is best known for his work on Autism.
Professor Baron Cohen firstly thanked the group for asking him to attend especially as he has a personal connection with SWS. He explained that his sister Suzy who turned 50 last year has the condition so when asked by Jenny to attend out conference he was delighted, he explained how his sister had been affected and shared photos with us, Jenny was unaware of his personal connection when she first approached him.
Professor Cohen explained Autism spectrum disorder (ASD), anyone who has a learning delay or language delay may have autistic tendencies, the effects which can cause range from;
- Social-interaction difficulties, e.g. difficulty engaging or recognising emotions from others, understanding how others think and feel, and holding a conversation and communication challenges, e.g. difficulty sustaining a conversation.
- Stereotyped behaviour or repetitive behaviour, e.g. repeating words or actions, obsessively following routines or schedules, and playing in repetitive ways and figurative language difficult e.g. needs literal language with clear instructions.
- Hyper sensitivity, e.g. hypersensitive to light, sound, touch, taste, and smell. Other children with autism are “under-sensitive”
He explained there are many similarities with Asperger syndrome in people with autism, Asperger syndrome has fewer problems associated with speaking and are often of average, or above average, intelligence. They do not usually have the accompanying learning disabilities associated with autism, but they may have specific learning difficulties. These may include dyslexia and dyspraxia or other conditions such as attention deficit hyperactivity disorder (ADHD) and epilepsy. However, some children are diagnosed with Attention Deficit Hyperactivity Disorder (ADHD), Attention Deficit Disorder (ADD), Anxiety Disorder or a relatively high-functioning form of autism such as Asperger Syndrome.
Diagnosis of Autism over the years has increased because of the condition being more recognised by the professionals instead of being classed as bad behaviour. Autism can cause frustration, anger, anxiety and deep distress not just to the sufferer but to the carer/parent & family there is no cure for autism, but there are ways to help minimise the symptoms of autism and to maximise learning such as, behavioural therapy and other therapeutic options which help to reinforce wanted behaviours, and reduce unwanted behaviours.
Speech-language therapists can help people with autism improve their ability to communicate and interact with others. Occupational therapists can help people find ways to adjust tasks to match their needs and abilities. Psychologists use various types of talk therapy with their patients and are often involved in the process of diagnosing both children and adults with autism. They may also recommend appropriate treatment programs, and/or support the process of evaluation, benchmarking and ongoing assessment. Physiotherapists design activities and exercise to build motor control and improve posture and balance.
Educational intervention involves a team of people, including the parents, teachers, caregivers, school psychologists, and other child development specialists who work together to design an Individualised Education Plan (IEP) to help guide the child’s school experiences to help to learn academic subjects and gain traditional readiness skills. They also help improve functional communication and spontaneity, enhance social skills such as joint attention, gain cognitive skills such as symbolic play, reduce disruptive behaviour, and generalise learnt skills by applying them to new situations.
Many children with autism are hypersensitive to light, sound, touch, taste, and smell. Other children with autism are “under-sensitive” to sensory stimuli. Figure out what sights, sounds, smells, movements, and tactile sensations trigger your child’s “bad” or disruptive behaviours and what elicits a positive response. What does your autistic child find stressful, calming, uncomfortable, and enjoyable? If you understand what affects your child, you’ll be better at troubleshooting problems, preventing situations that cause difficulties, and creating successful experiences.
Professor Baron Cohen ends by explaining that boys are four times more likely than girls to have autism, and there is no proven fact that the measles vaccine causes Autism.
When Jenny first asked me if I would be interested in talking at the May conference about my experience of living with Sturge Weber I immediately said yes! I thought it might be helpful for others, particularly the parents of younger children with Sturge Weber, to have an insight into living with Sturge Weber and the key issues it can present. I also wanted to emphasise the positive - having Sturge Weber syndrome isn’t something any of us would want, but the condition is quite variable, and living with it - however complex our needs - doesn’t mean we can’t make every day count!
At first I thought it might be an easy and fun thing to do, but as the months became weeks, and the weeks became days, the prospect of standing up and talking in front of lots of people became a bit more worrying ! I worked with my Dad to create a few slides and a script of what I wanted to say, and rehearsed it lots of times to make sure I would get it right on the day.
When the moment came, it was a bit scary and nerve racking at first, but I felt I had the support of everyone watching in the audience, and once I got going I think I did ok. Certainly, the feedback I have got afterwards, particularly through the Facebook page, suggests people found it interesting and helpful !
Ian’s presentation from the day can be viewed on this website.
Dr. Marit Bjornvold and Ine Cockerell
Our 4th speakers were Dr. Marit Bjornvold and Ine Cockerell, Epilepsy nurses from Norway who spoke about the National Centre for Rare Epilepsy Disorders at Oslo University Hospital.
She explained that Oslo university hospital consists of 16 centres, each with a different expertise for around 320 disorders. One of the centres is The National Centre for Rare Epilepsy Disorders which treats just 4 epilepsy related disorders - Tuberous Sclerosis, Landau Kleffner, Sturge Weber and Aicardi syndrome. The centre serves epilepsy patients all over Norway with difficult to treat epilepsy.
The department has national function for examination of epilepsy surgery and follow-up of patients operated on. In addition, they have national functions for the treatment of mentally disabled people with epilepsy, and they are a national competence centre of rare epilepsy related diagnoses, national competence centre of epilepsy and developmental disability and a regional competence centre of epilepsy and autism.
Dr. Marit Bjornvold and Ine Cockerell said they both found our conference very beneficial to them and have gained much knowledge to take back with them, not only from the professionals that had spoken but the sufferers and parents too; they would like to work alongside Dr Aylett in research and sharing information.
Our final speaker was Louise Derbyshire from Contact a Family, She explained that Contact a Family was founded in 1974, a National Charity that offer support, information and advice to over 340,000 families with disabled children whatever their condition or disability.
Last year alone their helpline answered over 8,000 enquiries from families in crisis or need, linked 179,000 families of children with specific rare conditions, linked 10,000 families with local services and resources and helped 5,000 families to get a statement of special educational needs, a crucial and usually hard-won first step in gaining financial and educational help from local authorities. They are always campaigning to improve the circumstances of families with disabled children and making a positive difference to the whole family.
Louise was speaking on the topic of how siblings of disabled children are affected, she explained that all children are different and show their emotions differently, some siblings will cope with a disabled brother or sister taking no notice of their disabilities but some may find it difficult. Some will feel embarrassed especially around their friends about their disabled brother/sister, some will get angry and some may be feeling scared and be thinking "Am I going to get what my brother/ sister has got?", Many siblings also feel left out because their parents can’t give them any time which can result in resentment towards their disabled brother/sister. Louise explained some of the ways which can help.
- Always be honest, explain the disability that your child has to their siblings (age appropriately) to prevent any misunderstanding, involve the siblings so they will have a better understanding, always answer questions which will help address any fears or concerns they may be having, Explain that certain behaviours are associated with the disability and not personal towards them.
- Children do not often talk; some ways to encourage them to express their feelings are by using play such as making a scrap book of all family members. For each one list the things they like and the things they don’t like - things they find easy and things they find hard. This will make siblings aware that their brother/sister has abilities as well as disabilities. Involve the sibling and always give rewards.
Louise asked if we could all fill a short questionnaire in and participate in a true or false team game, she provided us all with a Contact a Family information pack containing a siblings guide book, feelings and activity worksheets for our siblings to use and a list of other books that have been written specifically for parents and brothers/sisters of children with special needs.
Sturge Weber Syndrome is already a listed condition on the Contact a Family website offering information on diagnosis/treatment of Sturge Weber Syndrome and extra support via their forum which contains 13 parent stories and ways to make contact.
After a long day of interesting speakers it was time for the children to return from their trips, they all had a whale of a time and the weather was very kind to them. Little ones were collected from the crèche and, after refreshments; people began to make their way home with lots to think about. Everybody seemed to have found the day valuable in regard to the professional speakers, meeting other parents and their children mixing with lots of other Sturge Weber children. The valuation forms people completed also backed this up.