Matthew’s Friends Keto-Stars
At Matthew’s Friends, we know and understand how vital ‘support ‘is when on a prescribed Ketogenic Dietary Therapy.
We want to recognise not only the patients, be they children or adults, but also those around them that contribute so much and can make the difference between success and failure.
This is your opportunity to say ‘Thank You’ to a special person or family member, group, school, hospice. Perhaps a certain restaurant or hotel has gone that ‘extra mile’ that has helped your family eat/holiday together happily.
Tell us via this form why they deserve a special ‘Keto-Star’ award from Matthew’s Friends and they will receive a special certificate that they can display with pride.
They may also receive a surprise gift with their certificate!
Go ahead, nominate today and show that special ‘Keto-Star’ how much they are valued by you AND by us here at Matthew’s Friends Ketogenic Dietary Therapies Charity.
Matthew’s Friends Keto Stars Spring 2017!!
He is seizure free, drug free and so very happy now! This is all because of the amazingly powerful and effective Ketogenic diet.
When he was two, he developed severe, drug resistant epilepsy. He was knocked down so much but he got up again and played on! He wore a scrum cap to take the sting out of the blows which were relentless. His head used to drop to the floor like a bowling ball. It was torture for him and torture for us.
He tried six drugs, none of them worked. After two years we became desperate for a cure. So he took the dietitians advice and he embarked on a two and a half year feeding plan, with no exceptions and no days off! He took a specific measurement of protein, carbohydrate and fat, three times a day, seven days a week. He did the blood tests, he checked the glucose and ketones twice daily. It took months to get it right, we fine tuned the diet to suit HIS body which took a large amount of observation and record keeping.
Every detail of James was taken into account when tweaking the programme; physical activity, stamina, mood, speech, learning, appetite, interactions and energy levels. It was so very difficult, but the motivation to continue was there, because he just kept getting better!
After six months, he finally became seizure free, on his fifth birthday. What a birthday present! Everyone’s hard work had paid off. He continued the diet for two years as planned. It was such pressure on a young lad, no parties, no break outs! We avoided crowds because where there are people, there is always food! We didn’t talk about food. We kept food out of sight and we certainly didn’t make toast when he was nearby! When we started the diet he hardly had the energy to chew and he threw most food back at me. By the end of the diet he would try anything and I actually can’t think of a food he doesn’t like now
On his sixth birthday he visited the Munster Rugby team at a training session. They gave him a jersey and a birthday card. Paul, Donnacha, Peter and Simon spent a lot of time talking to James. Was James giving them advice on how to win a battle I wonder?
We were halfway there. He pushed on for another year despite awful tummy pain. Everything was weighed to the gram. He drank the cream, he ate the butter. He did what he had to do to rid himself of those awful seizures. He knew it had to be done. His body told him so. Now he is seven, he is off the diet and there is absolutely nothing stopping him from living life to the full.
He is a Ketogenic role model. He is a true inspiration for dietary treatment of epilepsy. It was so hard, but so worth it!
Thank you to all who have helped us on our journey, especially staff at CUH and Matthew’s Friends.
Feedback from James’ mum
‘I just want to thank you so much for sharing James’s story in the newsletter. We were delighted to see it and I really hope it will inspire somebody to give Keto a go. James loves money and vouchers so he was thrilled to receive his gold (keto) star award . He actually knows how much he deserves it and he appreciates that the diet just had to be done!‘
Claire, Mum to James
After a normal pregnancy, Rhys was born two weeks early, in May 2010. It was hard not to notice the large birthmark on his little face but it wasn’t a major concern to me as I was just so pleased to meet him. What I was not aware of is that a birthmark, especially one in the position of Rhys’s, could be a visual indication of a rare neurological condition called Sturge Weber Syndrome.
Our paediatrician kindly made us aware that he would like to conduct further investigations and so, at 6 weeks old, Rhys had an MRI scan that later confirmed that he did indeed have Sturge Weber Syndrome and so our journey began. We learnt that the condition, which affects 1:50000 people, had no known cause but could result in abnormal blood vessels on the skin, brain and eyes and could cause onset of seizures and glaucoma. We tried to continue life as normally as possible as there was the chance that Rhys may not have seizures at all but unfortunately, during a family holiday to Spain when he was 13 weeks old, he had his first seizure, followed by the next, and the next…
Doctors found it incredibly difficult to control his seizures and he stayed for a few weeks in the intensive care unit in Valencia Hospital. With seizures returning every time he moved from I.V. medication to oral, we flew home on a private medical flight and were in our local hospital for another few weeks before he was stable enough to come home.
Over the next year, Rhys was constantly playing catch-up with the dosage of medication to his weight and ended up on a combination of three different anti-epileptic medications. Despite this, he was still having regular seizures so, after careful consideration and investigations, he underwent his first functional hemispherotomy neurosurgery (disconnection of the right hand side of his brain) when he was 14 months old at Great Ormond Street Hospital. Following the surgery, Rhys’s seizures subsided and he went from strength to strength. He learnt to walk, seemed happy and came off two of his medications but sadly, after a year, we saw the telltale signs that he was having seizure activity again.
We tried, with the help of Great Ormond Street Hospital, to find the right combination of medicines to relieve him of the worsening seizures but, although he would sometimes go for days without a seizure, he was likely to have one at any given time. It was out for dinner with friends one night that one of them mentioned that her son was on the Ketogenic Diet to control his seizures. I had heard of the diet before but didn’t know much about it. Hearing her talk about it and given that we were failing to manage Rhys’s seizures well on medication, I asked the specialist team caring for him for a referral to the dietitians which they were happy to do.
Rhys was weighed, examined and tested for his suitability for the diet and, as he was, we were given his ‘prescription’ and access to all the supplements he would need. We were also given the Matthew’s Friend’s website for help, support and advice. I got home and meticulously planned meal after meal for Rhys in anticipation of his start date. I will be honest and say that it did seem incredibly overwhelming at first. This is what reminded me to take a look at the Matthew’s Friends website. Here I found lots of inspiration and the opportunity to request a starter box. We found, on its arrival that it was just so thoughtful, containing useful utensils, pots and a set of accurate scales as well as treats that Rhys would still be allowed once the diet commenced. We didn’t know at that time, how much we ended up relying on some of those things!
We continued the Ketogenic Diet for around six months and stopped due to it being discovered that Rhys could have his hemispherotomy surgery re-done. Prior to the diet, Rhys was having as many as 10 clusters of drop seizures a day. Once he was achieving good ketone levels regularly, his head seemed clearer and the length of time per day that he was having seizures decreased by a half to three quarters and he was never hungry.
I soon knew all of the weight allowances for the common items in his food choices and challenged myself to match his meals with the rest of the family. When we ate out, I prepared him food to take along and, more often than not, he was not aware that he wasn’t eating from the restaurant menu. He did not miss sweets and treats as he was allowed sugar free jelly and I baked him ketogenic cupcakes and biscuits and made ketogenic cocoa truffles and ketogenic chocolate yoghurt.
At the time of going on the diet, Rhys had tried so many medications and this offered an alternative. It is known that Sturge Weber Syndrome is notorious for difficult-to-control epilepsy so we were genuinely grateful to be making some difference for him on a daily basis. We are so thankful and pleased now to say that Rhys is doing fantastically well following his latest operation so long may it continue this time.
Latest Keto-Star Awards!
ROWAN HOUSE Young Epilepsy
NOMINATED BY KELLY WALSH…
“Nathan moved into Rowan house at Young Epilepsy in September 2015. Besides the fact that I was sending my son away to school and giving up ‘control’ of his medicine and everyday care I had to hand over the keto diet. I was not sure how they were going to manage his diet – and watch everything like I did – while taking care of him and the other boys in the house.
Well the team at Rowan House – Rob, Celia, Ben, Madalina and Jo and Andreina took my book of suggested recipes, ordered the necessary supplies and started cooking. Nathan always likes to point out when his routine is altered and not once has he told me that they missed a snack or bedtime milk shake. Nathan even comes home and tells me I need to cook like them!
Thank you for taking such good care of Nathan and watching every detail.”
NOMINATED BY JANE DOWNING…
“Dragos, who worked as an A&E Doctor, was diagnosed with an aggressive type of brain tumour last year. His dedication to an incredibly strict Ketogenic diet has been outstanding. He doesn’t particularly enjoy it. But he, with the support of his wife, for the sake of their two young sons have stuck to this difficult diet. He has been commended by his specialists, including a unique nutritional study being undertaken in the UK, for his attitude and ability to follow it.
Knowing how important food and variety was to Dragos I have been truly astounded by their dedication to what is clearly a challenging diet.”
Keto-Stars Roll of Honour – Spring 2016
Our very first Keto-Star award goes to Rhea and her Grandfather Vithal…
Purabi, Rhea’s Mum, tells us how she felt about receiving the awards for her precious daughter and Dad….
“Rhea’s been on the Ketogenic Diet for her Epilepsy now for coming up to 10 years! During that time we have had the support of the neuro and Ketogenic diet teams at GOSH but the support that has meant the most to us has come from a charity called Matthews Friends who have offered us so much help and support at the times we have needed it the most – weekends and evenings. We would have been lost without Emma Williams Julie Edwards and the rest of the team. They have always been there for us. Rhea’s benefited lots from being on the diet, however, we have all as a family had to commit to it in different ways and at times it’s not been easy. Rhea has had to cope with some of the side effects which she has done so well and her body has had to get used to having a diet of 80% fat. She’s also had to have three monthly blood tests.
My dad has been a super star and has been making up Rhea’s ketogenic feeds for the last 9 years now and that’s the favourite time of the day for him! He puts so much passion into making up the milks and weighs all the Ingredients so accurately. Dad cried today when he got his certificate! And I’ve had to liaise closely with all the teams over the years. Every single new drug she is stated on means that I have to have discussions with the medicine information team at GOSH so we can work out the carbohydrate values of drugs and figure out which brand has the least carbs in. Anyway it’s all been so worthwhile because today my dad and Rhea have won Keto star certificates from Matthew’s Friends and it’s made this one very happy household indeed!
My dad also got a special chefs apron which he will wear when he makes the feeds up and Rhea got a lovely pillow pet. These awards have given us such a boost as a family and we are so grateful to Emma and everyone at Matthew’s Friends. Much love to you all!”
Of course we would not forget super Keto-Star Mum Purabi herself, she was very happy to receive these flowers and message from all the team at Matthew’s Friends.
Oakley and Jayden are very happy to have received their Keto-Star Awards!
Their Aunt Katherine nominated them both for adapting and dealing brilliantly as their little sister Isabelle started the Ketogenic Diet.
“They haven’t complained once about having to eat out of sight of Isabelle or having to adapt to have the ‘same’ meal.”
We think they are fantastic big brothers and Matthew’s Friends Keto-Stars!
BEST WESTERN Mytton Fold Hotel & Golf Club | Blackburn
This hotel was nominated by Keto Mum Debbie Banks… “Amazing family run hotel. Very accommodating for Keto . Set up a microwave, mini oven, access to fridge / freezer. Nothing too much trouble . Really helpful staff”. On hearing they had received their award, Debbie said “Amazing! well done you truly deserve it xxx”
The hotel announced on social media… “We are very proud to have received a ‘KetoStar’ award from Matthew’s Friends today!” along with their great photo of the staff and their certificate.
Two other Keto Mums joined in the congratulations…
Karen Ridley… “Well deserved” and Joanne Glover “Oh wow and totally deserved we have loved spending our Keto weekends away there.. amazing support”
Nominated by Caroline Matthews, another fantastic Keto-Mum….
“Rachel’s son Henry has started the diet quite recently. She’s embraced the diet head on and is always inventing new recipes and finding new products. She’s set up a small and very informative (closed) Facebook group . “UK Ketogenic Diet for Medical Purposes”.
We think Rachel is a Keto-Star and Henry is too! We wish them good luck on their Keto journey, keep up the good work Rachel!