Chloe, 11 years
Chloe was diagnosed with Infantile Spasms at 6 months of age. She had not rolled over, was not using her hands, and was becoming increasingly stiff and spastic. She was losing the ability to hold her head up, and suffered violent jackknife spasms. We were told that she would probably grow up severely retarded with many physical problems.
The first drug we tried was ACTH. Chloe became withdrawn and irritable, and stopped making eye contact. She cried all day and all night, except while nursing. She had fits of uncontrollable rages so bad that another customer in a grocery store accused me of abusing her. Though the ACTH moderated her EEG somewhat, and the seizures were somewhat less violent, they did not decrease in frequency, and as she suffered from a half dozen illnesses at once due to her weakened immune system, her developmental skills dropped to nothing.
Chloe was put on a DOUBLE dose of ACTH. She didn’t sleep, she didn’t respond to anyone, she developed the extreme cushingoid features associated with the drug. She had thrush so bad from the lowered immunity, that the entire inside of her mouth, her neck and face was white with fungus. Double dosing did not work either. We considered brain surgery, but the PER scans were inconclusive. We then tried Tegretol. Chloe’s seizures stopped for two months, and she began to develop, smiling again, learning to roll over and to sit up. Then, at one year (on my older daughter’s third birthday) Chloe had a breakthrough seizure. Her seizures rapidly climbed back up to 20 a day. We were devastated. We experimented with dosage levels, but nothing worked.
Then someone on the Internet’s epilepsy discussion group suggested that I read “Seizures and Epilepsy in Childhood”, which contained that wonderful chapter on the ketogenic diet. I had seen one brief reference to the diet in a medical paper when Chloe was first diagnosed, but when I brought it up to my pediatrician her response was “I would never put a growing child on this diet”. End of story. But after reading the chapter in this book from Johns Hopkins. The more I read the more convinced I became that the diet was our answer. I tentatively suggested the diet with our neurologist. After discussing it with her colleagues, she told us she was very willing to give it a try.
In January of 2004, Chloe was hospitalized to begin the diet. It took a month of fine-tuning until she had a day free of seizures. Elimination of Tegretol also helped, because of its high sugar content.
My parents were visiting at the time and I remember very clearly the whole family was sitting watching TV when my father suddenly said, “I haven’t seen Chloe have a seizure today, have you?” Not one person in the room had seen a seizure. We watched her carefully for a few more days, but she remained seizure-free. She has been seizure-free ever since (down from 50 seizures per day at her worst).
Almost a year after starting the diet, she had and EEG. The neurologist said it was, “completely normal”! This child’s EEG went from wild hypsarrythmia to COMPLETELY NORMAL because of diet! She is now 11½ years old, bright and curious, with no physical handicaps. We are over the moon that she will be able to lead a normal life, despite the dismal odds we initially faced.
Cameron, 11 years
Cameron is a 11-year old boy with an amazing head of thick, curly blonde hair. He’s very tall, and he has always appeared to be in great health.
So, when Cameron developed quick jerking seizures at the age of 10 months, even the neurologist didn’t believe he had epilepsy. He was mis-diagnosed as having “Startle Disease”… a jerking reaction to loud sounds or stimuli. His EEG was abnormal, but the neurologist believed Cameron could just be one of those people who has a “normally abnormal” brainwave pattern.
However, as time went on, Cameron would continue to have this “startle reaction” even when there was no stimulus. At that point, with the help of a video-monitored EEG, he was re-diagnosed with myoclonic epilepsy.
To treat the epilepsy, doctors tried every drug available. Most of them would work for two weeks then they would become totally ineffective. By the time we ran out of drugs to try… Cameron was having five seizures a day while on 3 drugs simultaneously.
In January of 2005 Cameron was started on the ketogenic diet under Kath Megaw and Dr Simon Strachan. He spent five days in the hospital. Here’s what happened when he came home from the hospital:
- He had a total of five seizures in the first two weeks home… and he hasn’t had one since.
- He continued to eat three meals a day consisting mainly of fat… but “tastefully combined” so Cameron really enjoys what he eats.
- For example, at breakfast each day he has nearly an entire egg, scrambled with butter, fruit, and cream diluted with a little water to drink.
- For lunch, he loves a little bowl of popcorn with lots of butter and five strips of bacon.
- For dinner, he might get a little steak, broccoli, lettuce with mayonnaise dressing, and diluted cream to drink.
That’s a typical day of meals for Cameron and he seems very happy. Developmentally, he’s never been better. His language slipped considerably while on all the drugs. Now, he’s talking in long, complete sentences. He’s riding a two-wheeled bike without training wheels and he’s roller-blading (kiddy-style).
The prognosis for myoclonic epilepsy is not good. 95% of the children are retarded. However, the diet seemed to have lifted Cameron out of that dismal prospect. Everyone who knows him saw a remarkable improvement and 11 years later he is a energetic 11 year old.
Connor Yates-Butler, 2 years
My name is Connor Yates-Butler, I am 2 years and 8 months old. I have cerebral palsy and epilepsy. My seizures started when I was about 8 months old. The doctors tried all different meds and on full dosage (which made me so tired all the time) and nothing worked. I was having 14+ seizures a day. The paed told my parents to get hold of Kath and start the ketogenic diet. I started the diet on the 27th Feb 2013 and I have never been better. I have days were I have no seizures which is fantastic. I am so grateful for Kath and the Ketogenic diet.
Keilah, 14 months
MAE (Myoclonic Astatic Epilepsy)
Hi All, my name is Keilah and this is my story
I was almost 14 months old when I had my 1st seizure, a tonic clonic seizure of 10 minutes long. The next week I started to get head dropping seizures and within days it was over a 100 a day. The doctor put me on an AED (anti-epileptic drugs) and clever people said it helps in 80% of cases.
This made my seizure numbers more per day, they were more intense and I even got new seizure types, I was aggressive, drowsy and daddy used the word lethargic, I don’t know what that means but I felt sick and I looked sick. I tried my best to impress mommy & daddy with my development but the increased seizures including the new ones made me fell to the ground when I tried to walk and run.
The Doctor said we should increase the AED and add a new helmet to help me not to hit my head when I fell to the ground. After 6 weeks mommy and daddy weaned me off the AED and my seizures went back to what they were before.
Aunty Kath told my mommy about the Ketogenic Diet that has amazing results with seizure control and reducing the number of seizures. A high FAT low Carb diet that cause the body to create ketones and ketones help the brain with seizures. Can you believe it, plain food that we eat every day can help with my seizures J and I don’t even need a new helmet. Mommy gave me a bottle of Ketovolve(special keto milk) to see if I liked it and I did. I started the diet on 21 May 2011.
My seizures immediately decreased from over a 100 to between 15-20 a day. I was diagnosed with MAE(Myoclonic Astatic Epilepsy) or they call it Doose Syndrome. The doctor gave me another AED to take in combination with the Diet. My seizure numbers decreased a little but what was amazing is that my seizures where getting shorter and shorter and less intense. Only my mommy and daddy could see when I had a seizure and to everyone else it looked like a toddler movement. I was weaned off the diet in December 2012 but still get my MCT oils every day because it is good for my brain. I am also still on the AED but I am very happy and learning a lot. My speech and occupational therapist help me to practise and learn new things that help me with my development and the only helmet I need is when I ride a little horse with the name “Little Brave” every week J
Thank you to my wonderful team that looks after me and supports me through everything! And to my best friend, thank you Jesus.
Marius Douglas, 4 years
Reflux cramps, cholic
Marius was born on February 12th 2009. He weighed 4.225kg and was a very healthy and big baby boy! All went well with the c-section delivery and he was breastfed. He had no problems up until 4 weeks. He then developed reflux and cramps/colic. At first it was silent reflux but after about 8 weeks he cried after bringing up the milk. He was put on anti-relux meds (Losec, Nexiam and Ulsanic). It didn’t really help and the crying got worse. He didn’t sleep well at night and we had to take turns to sit with him during the night. A few days after he started on the meds he developed “staring episodes” and we immediately went to the paed who said it was “Sandifer’s Syndrome”; which is a reflux syndrome in small babies. It basically is small episodes that look like small seizures, but actually episodes from the pain of the reflux (the body’s way to express the pain and discomfort). Marius was then admitted in hospital after an apnoea-episode. Several tests were done and resistant reflux was diagnosed. No medication helped and a Nissen-procedure was the only option. The operation went very well and he didn’t bring up any milk or food after the procedure. He was 5 months at that stage. But he developed severe convulsions after the anaesthesia. They couldn’t manage to get the seizures under control and he was in status epilepticus. They did all kinds of blood tests (testing for metabolic disorders etc.), MRI scans of the brain and also EEG-testing to see whether he had epilepsy. All tests came back negative, so no one had an idea what was going on. In the meantime he was giving big doses of AED (anti-epileptic drugs) to stop the seizures. Eventually it stopped but he was like a zombie, not responding at all and sleeping all the time, like he was in a coma.
Altogether he was put on 12 different AEDs! He was on 9 AED’s at one time and eventually ended up in NNICU (he was 6 months old at the time) because the drugs they gave him could cause him to stop breathing. This was a very, very emotional time for us as we didn’t know if our baby would survive.
God answered our prayers and he pulled through but still remained in a semi-coma. All through this they inserted a naso-gastric tube as he couldn’t drink from his bottle. He completely “de-learned” how to suck from a bottle. This was very traumatic for us as he sucked normally and also ate food when he was admitted for the first time. And then he got RSV…twice!
Eventually the doctor’s said there is nothing more they can do for Marius, as they tried everything. Well obviously not everything…we didn’t try the ketogenic diet! Kath MeGaw came by the hospital to see Marius and us in a consultation. We started him on the diet immediately. It did take a few weeks before Marius was in ketosis but when he was we could slowly but surely see him waking up and responding more and more. Something was eventually working!!
It took quite a long time before the diet helped with the seizure control but we managed to go home after 4 months in hospital! I had to resign from my job to be with him at home. It was still not smooth sailing as he’s body still adjusted on the diet. At that time he was still on four AED’s but we were convinced it was the drugs aggravating the seizures so we decided to wean him off all medication as we believed the diet alone will control his epilepsy.
It took eight months to wean him off the meds and we did it! It was a rough ride but we pulled through and Marius was in a very good state. He continued to be more and more awake and respondent. Eventually he was just on the diet and we only gave Valium when necessary. It was definitely the best decision ever to get him off the drugs and on the diet alone!
Today he is still on the diet alone. He started eating by himself about a year and a half ago and loving it! He enjoys the food we’re making him and his body has completely adjusted and accepted the diet. We definitely think that he is starting to outgrow the epilepsy, with the help of the diet, as he almost never gets seizures anymore. And if he does have a seizure, he recovers from it by himself and it is not necessary for us to give Valium anymore. This by itself is a huge accomplishment, knowing where we were.
We read up a lot about the diet and trying to know everything and to understand it completely but it was so overwhelming to understand that a diet can “cure”/help our boy!
Marius’s development is obviously far behind and so he has physiotherapy every week and we also started with horse riding. In the beginning he was very weak and just laid over the pony’s back. It was just amazing to see how he got better and better every week. Now he is sitting upright on the pony all by himself while Tammy (his au pair) is holding his hand! He is also sitting on his own for long periods and also recently wants to stand on his own! We are seeing progress, although it’s slow, and for that we are truly thankful to our Lord.
We seek advice from numerous doctors regarding a diagnosis for our boy’s condition but none has been found. He was tested for a genetic syndrome but all tests came back negative. No one can tell us what is wrong with him. He is diagnosed with “Developmental Delay” and “Epilepsy”. We believe he was put in this position because of medication and wrong decisions…
We believe that our Almighty Father has given us this very special boy to touch other people’s lives and hearts regardless of all the pain and heartache we went through, we know He has a plan with us and our little man. And if that plan is to use Marius to gain people for His Kingdom through his life’s story, then who are we to complain.
Markus Venter, 21 months
My name is Markus.
I had my first seizure that lasted 20 minutes when I was 6 months old. In the months that followed I had plenty more difficult to control seizures. Some was short and some lasted over an hour. Some were twitches and others were absence stares.
There were many hospital stays en plenty of emergency room visits to stop the seizures.
My doctor gave me medicine to try to control all the seizures. At one stage I was taking five different AED’s (anticonvulsant drugs) .
Mommy said it made me very drowsy. I didn’t want to eat. I looked sleepy all the time and I didn’t even want to smile. I felt unhappy all the time.
When I was 11 months old my doctor diagnosed me with Dravet Syndrome. It is a mutation of the SCN1A gene and I was born with it. It causes severe drug-resistant epilepsy and for that reason mommy and daddy decided for me to try the ketogenic diet.
Today I am 21 months old and I’ve been on the diet for 6 months. Although my seizures are still continuing they are much shorter in duration. I also stopped taking two of the anticonvulsants.
Mommy says I am much more alert and awake and she gives me my mctoil every day. The oil together with all the fatty foods it is very good for my brain.
I am a bit delayed in my walking and talking. Mommy thinks a big reason for that is because of all the medicine and their side-effects. I wish I could have started the diet sooner.
But otherwise I am a happy boy that stays at home with my nanny and goes to speech- and occupational therapist to help with my development.
Thank you Kath and your team for all the support!!
Maryke Venter 072 528 0310
Where do I start and how much do I remember of the last 14yrs of my life? I will have to remember that period very carefully as my memory is not quite as good as it used to be.
I was 25yrs old when I developed Epilepsy. It all started one night in my sleep that had me wake up to find every light on in the bedroom on and my husband to be staring at me with big eyes and saying to me; ‘ Mikki, you have just had a seizure ‘. I thought he had lost it and told him to go back to sleep which is something I very easily did. The following morning my body told me the truth. I could hardly move. Every muscle in my body was in a spasm and I had a headache from hell. I couldn’t get to my doctor fast enough who sent me straight away to a Medi-Clinic where I had an EEG and MRI done as well as several other tests. After much waiting for results I was informed that I had some form of Epilepsy and needed to see a Neurologist. A bit of a shock to the system is a bit of an understatement. My hubby and I walked out of the clinic in dead silence, not knowing what to say to each other. Acceptance was hard and there are still days that I find it hard to come to terms with.
For 8 months I went through nights of seizures and then all of a sudden, one month before I was due to get married – they disappeared!!
4yrs went by and in that time I had our first child, we bought our first home and were the perfect family. Then I fell pregnant with my second child and for the first year all went well. We moved in to a bigger home, the kids had a ball being near to the sea and then things went wrong. I started having seizures again, this time no longer at night but in the broad daylight. Then the fun started. I think I saw 80% of the Neurologists in Cape Town, being put on various medications, fiddling with the strength of one and decreasing another one. Sadly, nothing seemed to kick in. I was fortunate and still am ok knowing that I am about to have a seizure and over the years have learnt to lie down in a certain position and go through one. Sometimes I am alone, other times my family are at home and they are amazing in helping and caring for me.
It had however got to the stage where I needed to find someone who would know what to do with me and someone that I would allow them to do whatever needed to be done. It was then that I was fortunate and blessed to find the most amazing Neurologist: Dr James Butler. A calm and gentle man who lived for the welfare and lives of his patients with his whole heart. I wish I had met him sooner. It was from here on that the ball got on the roll and decisions were made as to what could be done to help me. It was decided to go ahead with surgery so off I went to Constaniaberg Medi Clinic which became my second home. EEG’S and all the tests were done to find out where to go and what to do. Sadly the first operation could not be done. I failed terribly in a memory test that was done and I couldn’t afford that. So it was back on medication, once again fiddling with medication and trying our hardest to find a good combination. After 18 months of not getting my brain to come to the party, I begged to see if we could try surgery again. The same tests again in hospital and this time we were successful. I was blessed to have the most amazing Neurosurgeon, Dr Melvill, who took out what was needed and it was a success!!!!!!!!!!!!!!!
But I was still having seizures and this is where my memory took a knock and to this day I still can’t remember things that happened to me. The only way to know is to ask.
So now I am once again on various medications. The one thing that Dr Butler feels very strongly for me is to try the Ketogenic Diet, hence the reason why I am here today. He has put several patients on to it and it has helped them with their seizures. So this is how I have come to meet Kath Megaw. She is the woman that Dr Butler sends his patients to and thanks to her; she modifies diets accordingly and in my case to Epilepsy.
The reasons for being here today are endless. I want to learn more about the diet, what my body needs to hopefully help me in some way with my seizures. I met Kath at the beginning of the year and what a wonderful woman. She has been so encouraging, helping me when I have emailed her with loads of questions and it is so reassuring that Dr Butler and her work together.
Last year from January ‘till July of that year. I had had 26 grand mal seizures. So far this year to date I have had 7 grand mals!!!!! Quite a big difference.
Every bit of information that is out there I am grabbing. Listening to others who have been on the diet and what theirs is like, my ears are wide open. My friends and family are so encouraging but I often have to remember that it might not last forever. My brain will play its own game and will decide what it wants to do. In the mean time I will be thankful for every seizure-free day that goes by but if one comes along, I will learn to pick myself up and start counting again.
Saskia Joely Lombard
The birth of saskia,a happy joyous moment that turned like the tide into a soul depleting experience. From private hospital to provincial to Red Cross Childrens Hospital, this is where the journey began.
Saskia,our little earth angel. She has taught us abundant love and tears. Our souls have been painted with her jagged journey.
Our hearts admire her strength to fight her daily battles. Who would think that a 12 week vaccination would change her life, steal her thoughts. The Pros and Cons, unfortunately were the Con.(Ssshh, to blame the vaccine is a swear word)but like I said, there is pros and cons, a personal decision. She suffers with bad convulsions. Just as she gets stronger, they knock her down.
Meds do not seem to win the battle, only her heart, our little brave heart seeking and pleading for freedom. Saskia is a little human chemist as she is on so much medication, the side affects she could have and does have are scary.
The Ketogenic Diet was a song to our ears, it was our only option and worth a try. Hopefully it would reduce seizures and therefore reduce meds as well. Six months we tried, but could not get a true result as she was in and out of hospital with chest infections which affected her ketones like a roller coaster. We want to try again as she has a PEG through which we feed her.
Therefore we can have more controlled ketone levels and nutrition. It has been almost four years and the scars are written on our hearts, her words are silent yet her quiet voice has captured the hearts of many. She is our “Little Face Sparkle Eyes”, and we will never say never. She will walk and dance,sing a song and clap her hands.
This whole experience we have gained an extended family. From nurses to parents,therapists to doctors. We are truly grateful for the genuine caring help of her pediatrician Dr A L swart, he is truly amazing. Thank you so so much.
It is our journey to help saskia achieve the best that she can be, but ironically she has helped us achieve the best that we can be and for that we THANK YOU SASKIA.
Keywords of our journey.
Joy,shock,denial, tears,anger,convulsions,brain,scans,sedation,stats,monitors,high care,caring nurses,low muscle,tone,secretions,aspiration,lung, infections,physio(skop and donder),nasal gastric tube,peg,infections,anti-biotic(big time),x rays,chest scans,bloodtests,apnoea,oxygen,intubation,ICU,my sister sue our amazing guardian angel,paramedics (thank you ER guys)…….the list is limitless.
Shay Plummer, 3 years
Our beautiful little girl, Shay, is 3 years old, and every bit the gift that is the translation of her name.
Shay was born at full term, after a much-longed for pregnancy and declared to be as perfect and healthy as she looked. Unfortunately, looks can be deceiving and within a few days of her birth, her challenges began to arise.
Shay lacked any sucking reflex and had to be fed small amounts by syringe every two hours. She has exceptionally low muscle tone, making her floppy and unable to move purposefully or hold her head. The full range of blood tests, chromosomal screening and brain scans done at a tiny ten days old, showed no abnormality, no explanation for her symptoms. There is no history of neurological or paediatric disorders on either her dad’s or my side of the family
By a few weeks old, it became increasingly obvious that Shay did not respond to visual stimulus. We spent hours every day, hungry to make contact with her beautiful blue eyes, but to no avail. Opthamological exams at four weeks old showed no structural abnormalities: again – there was no explanation for her inability to see the world around her.
Then the seizures started. They didn’t respond to the first anti-epileptic drug or the second or the third or the desperate fourth. They ranged from aggressive spasms making her little body jerk and shake, to tiny twitches and eye rolls to excessive myoclonic jerks, leaving her screaming in terror. Massive doses of ACTH – a steroid used to treat the devastating form of epilepsy she was diagnosed with (Infantile Spasms) left her with rickets, bloated, covered in acne, sleepless and irritable … And the seizures remained.
Metabolic studies in the Netherlands, CGA Array testing in the UK, a spinal tap, more brain scans and further testing for more obscure disorders again provided no answers. There has been endless research and specialist consultations, numerous hospitalisations, speech therapy to teach her to suck, physical therapy to ease her sore little body, occupational therapy in attempts to develop her eye sight… with no results. Our beautiful child barely seemed present, drifting in and out of a place in her head that was far, far away from us, but also hopefully far away from the pain and the fear and medication that has defined her short life.
Just before her one year birthday, shortly after Shay’s first magical smile, a third brain scan revealed the unthinkable. Shay’s brain is degenerating. Instead of growing exponentially the way normal infant brains do to accommodate the incredible development that takes place by the age of two, Shay’s brain has atrophied to the point that it is in worse shape than it was at 2 months of age.
Further consultation with a leucodystrophy specialist in the Netherlands, ruled out a white matter brain disorder – Shay’s brain imaging didn’t reflect the type of atrophy consistent with this family of brain disease. We partook in a genetic research programme in Finland for Finnish heritage diseases (a long shot, but her symptoms were a good match.) But the results were negative for the genetic mutation found in sufferers of this disorder (PEHO syndrome).
Shay had a muscle biopsy performed when she was 13 months old (a horrible operation under general anaesthetic to remove a cubic centimetre of muscle from her little thigh) in order to analyse the tissue for mitochondrial disease. The results were negative. To date we still have no diagnosis. We have come to terms with this (some days).
When Shay was 18 months old, her seizures became so bad that she lost all ability to suck or swallow and the precious, treasured smiles went from few and far between to completely absent. We had lost the tiny bit of Shay that we had access to.
In desperation we agreed to a gastrostomy; an operation to have feeding tube fitted directly into her tummy. At this stage, she was still on two anti-epileptic drugs, neither of which was making any difference at all.
Immediately after her mic-key was fitted, working with Kath Megaw, we started Shay on the ketogenic diet.
No sudden miraculous change took place. But slowly, gradually, a small light came back to our little girl’s face. After three months, her EEG had settled from the hypsarrythmia to which it had deteriorated before we started the ketogenic diet.
We insisted to our neurologist that we wanted to wean the first of her remaining AED’s. Over 3 months, Shay became increasingly content. She cried less. She started to smile occasionally in response to stimulus. We celebrated!!!
We weaned the last AED. Four months later, Shay’s seizures remained better than ever before. 6 months ago, her latest MRI revealed that the rate of her brain atrophy appears to have slowed.
It hasn’t been an easy journey. Pricking a teeny tiny finger three times a day to test ketones is heartrending for a parent. Worrying about grandparents and friends and her nanny giving her a “treat” because they really don’t yet understand the principles has been difficult. Education is a process.
Kath has been through it all with us. SMS’s and the BBM’s in the middle of the night were not uncommon. She wept with us. She celebrated with us.
In June, Shay celebrated her third birthday. Her multitude of doctors had diagnosed a probable life expectancy of two. Our little girl is a rebel at heart.
Shay will never function normally. She will never see us or recognise our faces. She will never walk or talk. But thanks to Kath, thanks to the ketogenic diet, Shay is responsive in her own way. She has pleasure in her life. And Shay’s pleasure brings us more joy than I ever imagined possible.
Zac Bruwer, 4 years
Zacs story is quite sad and every time I share it with someone it reminds me of how precious life is and how we sometimes take it for granted!
Zac was born on the 25 may in 2009, he was a perfect little boy, healthy and full of life. Shortly after celebrating his 1st birthday at 15 month old the worst thing happened to him, to us as a family!
On the 25th of August 2010 our driveway gate (500kg) fell on Zac’s tiny little body, crushing and suffocating him! I was not home at the time and he was being taken care of by his nanny!
I got terrible phone call from her screaming and I rushed home! When we drove up our street I noticed our gate was lying on the driveway and I wondered what blue teddy was lying under the gate and then it hit me it was my baby, my little Zac!
I jumped out the car and with strength that I don’t know where I got it from threw the gate off him, his body was cold, blue and he wasn’t breathing!
I started CPR straight away and we rushed him to hospital. The Doctors administered two shots of adrenalin and he was resuscitated.
He was put on life support and we didn’t know if he was going to pull through! They declared him brain dead and wanted to switch life support off, I refused and insisted on another EEG in the morning. The second EEG showed activity, very very little, but it was enough for me!
We were transferred a week later to Cape Town and admitted to Constantia Medi Clinic, we stayed in hospital for 4 months I never left his side, I never went outside, I didn’t move from his bed side, I was waiting for him to wake up, to smile or even cry but it never happened!
I did hyperbaric oxygen treatment with him and waited and waited for his beautiful smile, nothing! He just lay there staring straight ahead with no emotion or feeling, he literally felt nothing no pain, he was operated on and didn’t even cry!
Five months later we came home and I had to bring Zac to meet his 2 brothers who were convinced he was ok, they took one look at him and said confused,” he looks the same” oh how my heart broke, knowing he will never be the same little Zac they kissed goodbye 5 months ago when they went to school!
My oldest son Damon now 13 years old said as soon as he can see again he will be fine, and that’s what they waiting for! Kyle my youngest son, now 11 years old, is constantly trying to make Zac laugh, and often looks at photos of Zac before his accident trying to understand what is wrong!
That is my driving force for wanting to heal my Zac so that he can do something as simple as smile!!
Zac is spastic Quadriplegic, he is cerebal palsy he is cognitively blind and suffers from severe epilepsy BUT he is alive and 2 years 11 months ago he was in a full vegetative state with no awareness able to do nothing not even swallow his own spit, he has a gastroscopic tube in his tummy where he can get fed directly into his stomach.
One of the side effect was he started getting seizures/epilepsy and with that he vomited all the time sometimes 25 times a day. Medication was having very little effect on him everything was so severe and he was too small for higher doses. So I started the Ketogenic diet and it stopped the vomiting!
We have raised funds twice and I have taken him to China twice since his accident to have stem cell transplanted, it has been a success! The chances of it working where not very good but we took a chance!
Zacs is still spastic quadriplegic but can now move his legs and arms and I have almost got him to sit unsupported on his own. He has so much more awareness and turns his head to look around especially when he hears his brothers. He can cry and make baby sounds goo goo ga words! His expressions can show me when he is upset sore or happy!
Zac can see a bit now, he can distinguish between light and dark and shadows and sometimes it looks like he is focusing on things! I believe his sight will return with therapy!
Zac also started eating and drinking a bottle, the suck swallow and breath motion is very difficult as it requires a lot of coordination but he did it, sadly he had a epileptic relapse due to me stopping his ketogenic diet and has lost that ability, he has also started vomiting again but I am getting that under control. He did once he will do it again!
(Ketogenic milk is too expensive and I could no longer afford it)
Zac is a amazing little boy and everyone who comes into contact with him leave feeling a tremendous amount of love because that is what he is pure unconditional love. All I ever want for my son is a chance a chance at rehab, proper diet, proper care, so not only to make my life easier but most important to make his life and quality of life the best possible!!
With all my heart I thank you,
Lots of hugs, Lorena & Zac
Ava Hope, 1 Year
Tuberous Sclerosis & Epilepsy
Hi everyone. My name is Ava Hope Wink.
My mom’s name is Shervani and my dad is Werner. I am 1 year and 1 week old 🙂
When I was 3 months old I was diagnosed with Tuberous Sclerosis and Epilepsy. I started to get absence seizures and infantile spasms.
My mommy then met a very nice lady called Kath, and she put me on this weird diet called the Ketogenic diet. I started this diet on 16 March 2013. Don’t they know little ladies don’t do high fat diets… I need to maintain my figure 😉 But it worked as I haven’t had any seizures since the 7 April 🙂
I am doing really well. And growing nice and big and I must admit I’m quite the cutie. There has been a lot if improvement since my last EEG, so I think I’ll stick to this high fat diet for as long as I need it. I’m really sorry we could not make it to attend the clinic and meet you all but definitely next year.
Love you all, Ava xx
Kristan Hendrikz, 12 Years
Kristan is a 12 year old girl full of soul. She is a beautiful child with a strong faith in God. Her sense of humor makes her a delightful individual. She has thankfully been seizure free for three years. She is no longer on any epileptic medication and on no particular diet. Kristan was diagnosed with epilepsy when she was three. It got progressively worse and no medication worked effectively. As the seizures continued, Kristan began to have difficulties with her speech and acquiring language skills. She drooled and sometimes wet herself. She would lose consciousness and suffer lameness in her arms and legs after a severe seizure. She was on the highest dosages of medication and her condition seemed to be getting progressively worse. Within a month of starting the Keto diet her seizures tapered off. We reduced her medication completely and followed the Keto diet strictly for a year. Slowly but surely we found we did not need to follow the Keto diet as strictly and today she eats what she likes. Kristan is being homeschooled and is progressing steadily. She is creative and shows artistic talent. She loves music, drawing, building puzzles and loves socialising.
Kristan is a 12 year old girl full of soul. She is a beautiful child with a strong faith in God. Her sense of humor makes her a delightful individual.
She has thankfully been seizure free for three years. She is no longer on any epileptic medication and on no particular diet.
Kristan was diagnosed with epilepsy when she was three. It got progressively worse and no medication worked effectively. As the seizures continued, Kristan began to have difficulties with her speech and acquiring language skills. She drooled and sometimes wet herself. She would lose consciousness and suffer lameness in her arms and legs after a severe seizure. She was on the highest dosages of medication and her condition seemed to be getting progressively worse.
Within a month of starting the Keto diet her seizures tapered off. We reduced her medication completely and followed the Keto diet strictly for a year. Slowly but surely we found we did not need to follow the Keto diet as strictly and today she eats what she likes.
Kristan is being homeschooled and is progressing steadily. She is creative and shows artistic talent. She loves music, drawing, building puzzles and loves socialising.