Johann and Shannon Pretorius
Age of parents:
36 and 35
Age: 7 months
Is this your only child?
No, he has an older sister, Jamie (3 years old)
Diagnosis of child:
Dylan contracted bacterial meningitis 4 weeks after his birth. A week after the meningitis cleared, he was having up to 20 seizures a day. The cause of the seizures has never really been understood. The current professional opinion is that Dylan suffers from a very rare glucose intolerance, known as GluT 1 deficiency; we will be doing another MRI and LP soon to confirm this.
What are the biggest challenges facing your child on a daily basis?
Dylan is on the Ketogenic Diet, his diet needs to be very well controlled and requires constant monitoring, we draw blood 2-4 times a day to test his levels and make sure ketones and glucose are within range. It is a very hands on diet and it requires constant attention. It can be stressful when his levels are out, MCT oil if ketones are low or apple juice if ketones are too high. Kath Megaw our dietician is incredible; she is hands on, and ALWAYS available, even at 3am in the morning. On day 2 of the diet his seizures stopped and I am SO pleased to say that he hasn’t had another major seizure since. We are currently experiencing fluctuating levels, so the twitches (seizures) have started again but we are confident we will soon have this back under control.
What are the happiest moments you have with your child on a daily basis?
Dylan is a very happy baby, and full of smiles and giggles. He loves his sister, Jaime, and whenever he sees her, he laughs and gets the biggest smile! For the 3 months that Dylan was in and out of hospital, he was completely out of it, and not with us at all. We went to Cape Town and met Kath, and she gave us back our baby boy, and for that, we will be forever grateful!
Are you married?
Has your special needs child had an effect on your marriage?
Yes, the journey we are on with Dylan, is constantly testing our marriage. I am a very cautious person, while Johann makes decisions on the spot. We sometimes have different opinions and different ways of looking and dealing with the situation. At the same time it has also brought us closer together, we talk a lot more.
Are your family and friends supportive?
They are, very. Both our families have been there for us, from the start. We are a close family and both sets of grandparents try and spend as much time with their grandkids as possible. I think it is important for Johann and I to be as knowledgeable as possible about Dylan’s condition. We need to do another MRI and LP, so we can understand as to why the seizures took place and what the long-term treatment is.
What has your child taught you about yourself, both positively and negatively?
Dylan is a real fighter and has had a hard time of it, since day 2. He has taught me to have faith and to be strong. He doesn’t complain or cry when we prick him for blood and he takes all his meds so well. Jaime has been incredible through everything and still is. She has taught me to be patient. She gives me time to sort Dylan out.
The whole time while Dylan was in and out of hospital made me seriously consider what I want for my family and myself. I decided to leave the corporate world, as my job demanded a lot of time away from my family, lots of traveling. I am now self employed which has freed me up to spend more time with my kids. This experience has made me appreciate the most important thing in life – Family!
Do you take time out, if so what do you do to relax?
Not really. Jaime is a very busy 3 year old and looking after Dylan and having to constantly monitor him, takes up a lot of our time. We try and sneak in a spa treatment once a month. I must be honest I can’t remember the last time we had a date night. We try and go to my folks place at the Vaal Dam as much as possible, which does give us some time out.
What has made the biggest difference to your child’s quality of life?
The Ketogenic Diet. The anti-epileptic meds were not helping him at all, and were actually making the seizures worse. Putting him on the Ketogenic Diet as early as we did, I believe, was THE BEST thing ever, and I hate to think where we would be now if we hadn’t of done it. It is very scary that the doctors do not offer the diet as a first option treatment. Dylan responded immediately to the diet and I have also met a few Mom’s where the diet has significantly decreased the amount of seizures their kids were having. When we approached our Neurologist, who was treating Dylan at the time, she said we were jumping the gun and we haven’t exhausted all our options with medications yet. Why “drug” your child, when you can try something non-invasive like the Ketogenic Diet, it can make all the difference. If we hadn’t searched for it on the internet, we would never have found out about it. The diet needs to be brought to parents’ attention, as a viable and effective option.
What is your dream for your child?
For my children to be happy and healthy kids. For them to play with each other and to be kids for as long as possible.