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My Keto Journey

Jenny’s Fantastic Low GI Meals

Low GI Diet

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We are very excited to share these fantastic meals provided by Jenny de Pontes, who has started the low Glycaemix Index (GI) diet for her daughter.  They are bright, colourful and creative.  Well done Jenny. 

Here is some information on the Low GI Diet:
This diet was developed as a treatment for epilepsy was developed in 2002 at the Massachusetts General hospital by dietitian Heidi Pfeifer and Dr Thiele.


The Foods Glycaemic index refers to its effect on blood sugar level. The Glycaemic index can be modified by adding fats or proteins to carbohydrates, slowing digestion and therefore lowering the glycaemic index.

The Low GI Diet is similar to the modified Atkins diet and ketogenic diet as it regulates the quantity of carbohydrates consumed typically to 40-60g per day. Carbohydrate rich foods are limited to those with a glycaemic index of < 50 .

All the diets require individualized tailoring to meet the individual’s needs. All these diets need to be done under guidance and treatment of a team comprising a Neurologist, Physician or Paediatrician and specialist Ketogenic dietitian.

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Special Report

Nutr-e-volution’s OmniCT(MCT oil) and Ketovolve

Product Review

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The  Nutr-e-volution’s  MCT Oil (Medium Chain Triglyceride) bottle have gotten a bit of a revamp on their label.  Still the same great product (liquid Gold ☺) in the same brown bottle but new OmniCT label.  We have been using this product from the start by giving it with a syringe.  This is a great product that is tasteless but the texture is oily.  Those of you who know Keilah have seen her giving  herself a 5ml or 10ml MCT oil syringe, I am not lying!!!  You can add MCT oil when baking goodies and has a smoke point of 160 degrees Celsius.  Usually MCT oil is given on the MCT diet but you can use MCT oil as a top up on the Classical diet, Modified Atkins Diet or Low GI diet too. 

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Ketovolve is another great product from Nutr-e-volution’s .  Keilah was on ketovolve bottles when she was little and I have started baking with it now.  This is on a 4:1 ratio so very high in FAT per 100g but also has protein in and low carb.  Ketovolve can also be given through nose feeds or on continuous feeds via a peg.  Ketovolve is also free of gluten, Sucrose, Fructose and Casein (Dairy Free) . 

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On 2.67:1 ratio and 321 calories (Gluten free, Wheat Free and Dairy Free)

25g Avo

25g Banana

20g Coconut Milk

9g Ketovolve

12g MCT oil

7g MCT powder

2 TBSP Sweetner

5g Vanilla powder 

Blend everything in a blender until creamy.

Ingredients Photo

Ps Please use the EKM tool to work out your child’s meal or ask your dietician to re-calculate this meal according to your child’s values ☺

If you would like to view some more Ketovolve recipes, download the recipe book at http://www.ketovolve.care/ or click on http://specialkids.co.za/home/images/pdf/Ketovolve.pdf

Have a great week everyone

The Story of Adam – Our Keto Journey

Daddy Blog

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Thank you so much to Phillip Kruger for sharing his and Jolene’s journey with their adorable boy Adam.  Phillip proudly presented this talk at The Keilah Foundation Breakfast held in Johannesburg on the 7th March.  I know it will touch everyone’s hearts.


My son, Adam Kruger, was born on the 17
th of January 2014.

Before his birth, Jolene and I imagined him as a little boy running around the garden with a shrill laughter ringing through the air and a smile capturing our imaginations.

We imagined he could follow in his parents footsteps and be an attorney and taking on the world.

But then tragedy struck and in the very early days of his life we were devastated by the news that Adam had a brain injury, due to severe birth asphyxiation.

In the early days that passed in NNICU, I remember clearly clinging on to the hope that Adam would still be the boy we imagined.

As days turned into weeks, however, we realized that Adam’s movements were not quite right and wondered whether it was CP or seizures?

As weeks turned into months, however, we realized that he had abnormally many seizures, but we didn’t know the extent of it yet.

As this point Adam was 4 months old and the seizures were too many to count and we as parents spent countless hours researching what a myoclonic seizure is and how bad it is, what it meant and how to cure it.

At this stage Doctors medicated Adam with phenobarbital and epilim. We must have had the only 4 month old that slept through from all the drugs Adam was on!

The turning point came when we thought Adam had infantile spasms. The fear we felt was indescribable and little did we know our journey was going to be taking a different route.

The good news was that Adam did not have infantile spasms. The bad news was that we soon discovered he had so many different kinds of seizures and they were attacking him constantly.

We soon realized that medications did not really help that much, as his metabolism just burnt it up and most blood tests came back saying therapeutic levels have not been be achieved.

The Doctors were baffled and decided to put Adam in a dormican coma. During his 6 month milestone, Jolene held his hand while he was blissfully in a coma and on a vent. We often still feel the overwhelming sadness that we never got to hold him and play with him on that day.

Due to the number of seizures the Dr diagnosed Adam with malignant migrating partial epilepsy of infancy (MMPEI).

We immediately consulted much acclaimed Dr. Google and what we read was actually horrific. Our fear was unspeakable.

Adam was brought out of the coma and the seizures seemed better, but as soon as a hospital bug hit his system, the seizures came back.

The Doctors solution further increased his dosage of phenobarb.

After 72 days in hospital we finally took Adam home and we were overjoyed.

At this point we also had full realization that we were taking home the seizures and a horrific diagnosis.

This was at this point that we realized that clinging onto the hope that Adam would be that boy we thought he was going to be, was based on fallacy.

Realizing this spurred on a period of mourning and quite a bit of bargaining with God begging him to take something else but give Adam back his life.

We felt angry and betrayed. Betrayed by religion, medical science and betrayed by the general belief that “things will be OK in the end”.

At this point we had an 8 month old that slept 18-20 hours a day due to extreme doses of meds. We couldn’t really get to know him because he was constantly sleeping.

After several months we realized that the meds were not working and it was time to fight seizures head on.

This was when our little miracles started to happen.

Our first little miracle was when our Doctor informed us that Adam did not have MMPEI. We were truly over-joyed. To have such a sword hanging over us removed was nothing short of a miracle.

It was round about this time that we started the ketogenic diet, our second glimpse of little miracle.

At first we had a hard time getting the ketogenic diet to work, but just as we were about to give up, the Keilah Foundation found my wife, Jolene.

The Keilah Foundation in turn sent Kath and Amanda from Nutriepaeds across our paths and it was at this point that the ketogenic diet became Adam’s life line.

Slowly but surely we saw his ketones climbing. One day we noticed a complete drop off in the seizure rates and far less intense seizures. Yes the seizures were not gone but less.

The diet at this point gave us the courage to wean Adam off phenobarbital. It was a scary time but the best decision we ever made.

Behind the “phenofog”, as we like to call it, emerged a little boy that was just an amazing blessing. Adam started to smile at us and stare at us, and he cried for the very first time in 6 months when he was unhappy.

Slowly we got to know him and fell in love with him, utterly and completely. We started living again and enjoying life. And slowly the seizures lessened.

The ultimate little miracle of Adam on the ketogenic diet is that allowed us to start dreaming about what the future will hold for us as a family and also gave us the strength to accept that Adam may not the little boy we had naively hoped for, but that Adam is Adam, and that he is far more than we could ever have hoped for. He makes us so proud regardless of his disabilities.

Adam has taught me that perfection lies within the cracks of human demeanor. That true happiness is mixed with joy, sadness, fear, pain and hope.

We have made peace with the monster we call seizures, I know it is something we may have to live with for the rest of our lives, but I will not allow it to rob us of any more time together.

We will fight it for and on behalf of Adam and will be forever grateful for the people we have met along the journey, but most of all we are thankful we have met our miracle, Adam Kruger.

December

Mommy Blog

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It is close to the end of the year and I am sure you all are ready for a great holiday.  Some summer sun and fun for all.

This has been a very tough year for a lot of families.  Families have received bad news regarding their precious little ones in different ways.  It is difficult to stay positive in times like that but we need to support from each other.   We need to take it one day at a time.  Also, rest up so that we are strong enough to fight for what is needed.  YOU ARE doing the best and are all amazing!!! Don’t entertain any ideas that don’t align with this.

Never let anyone put a ceiling on you your child’s abilities.  Looking back I am in awe of how Keilah is able to do more and more and teaching me lessons along the way.   Our brave little princesses and princes have shown us what brave and courageous looks like, we just need to look into their eyes and it shines brightly.

The dedication and thoroughness of our children’s team of Neurologist, Paediatric Neurologist, Paediatric Dietician, Paediatrician, Psychologist, Physiotherapist, Occupational Therapist, Speech Therapist, Teachers and Care givers is a blessing.  Without them, where would our kids be?  You build such strong relations with these amazing professionals that they are part of your family and why see them as any different.  The Lord has heard every prayer and has guided each one of them with the right approach for our kids.  Thank you to the Lord for guiding us all each and every day with what is the best for our children and being with us through every situation.

May you all have a blessed Merry Christmas and may the New Year bring love, peace, guidance and happiness to you all. 

As a mom of a child with special needs…

Our story

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As a mom of a child with special needs, I find myself constantly looking for options… alternatives to pharmaceuticals and traditional therapies. I have never been one to accept being told that there is only one way to do something, I have always looked for alternative options. You could say I march to my own drum beat….

Despite the advances of modern medicine, there are some conditions that cannot be cured. Epilepsy is one of them and cerebral palsy another. Unfortunately we are dealing with both. Sure, there are a number of pharmaceutical drugs available to reduce the instances and duration of a seizure, Botox and baclofen to reduce spasticity but they don’t come without personal cost. Long term use of these medications does carry risk factors, and we suggest you chat to your doctor about them. With these risks, it’s worth trying alternatives don’t you think? With risks like these, it’s worth trying alternatives don’t you think?


There’s some controversy over the use of essential oils to prevent epileptic seizures. Without a doubt, some essential oils should be avoided if you have epilepsy. That doesn’t mean that it shouldn’t be considered a viable alternative. Aromatherapy is an age old natural remedy that has been used to address a number of health conditions. Topical application and inhalation of therapeutic grade essential oils make it a potent form of therapy because of the significant effect on the central nervous system. Essential oils are known for their ability to “fly” through the thickest cell walls.  In fact, essential oils are nature’s most effective delivery agent for feeding your body’s several trillion cells with nutrition and oxygen and helping to eliminate toxins. I believe that Gods love and wisdom is in every drop of essential oils and that is why they work so well.


I’ve learned quite a bit about alternative medicine including the use of therapeutic grade essential oils for epilepsy and cerebral palsy over the past 6 months. Applying oils like Frankincense, Cedarwood and Lavender behind the ears, crown of the head, down spine and on the feet in combination with foot reflexology has shown a reduction in the number of seizures. I also have a blend of oils mixed in coconut oil which greatly reduce spasticity in Ella’s legs. The beauty of oils is that there literally is an essential oil for anything.


The reason I share my story is because while essential oils for seizures and CP may not be a cure, they are certainly helpful at improving my precious daughter’s quality of life. When facing any serious illness, it’s to your benefit to seek options and weigh the pros and cons of each. I am not a doctor so I’m certainly not advising you to discontinue any prescribed medication; I only urge you to start reading about them and possibly give them a try.

Essential oils are God’s gift through nature for a number of things that ail us. They should not be ignored. I am very happy to share my research and experiences with essential oils. You are welcome to email me if you would like you chat more about this. NicciDry@gmail.com

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Disclaimer:

TKF believes that there many different solutions out there for you, some traditional and some alternative, but recommends that you consult your neurologist, paediatrician and/or dietitian before embarking on any alternative therapies. No expressed or implied warranty or guarantee should be constructed from the content of this article.   

DaVinci Syrup

Product Review

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One of the most amazing products I have found in the UK is Caramel Da Vinci syrup. 

Some of the mommies add it in their coffee but for our precious keto kids this means we can add it to cream milkshakes, liguigen, coconut milk, ice –cream, muffins, cookies and even adding it to fat bombs!!!! 

This is one of those products you can add to anything.  The have a variety of different flavours too, depending on the mood.  Macadamia nut, Hazelnut, Almond, Peanut butter, Huckleberry,  Toasted Marshmallow, Pumpkin Pie, Blueberry, Lime, Pineapple, Root Beer, Ginger bread, Cinnamon, Banana, Orange, White Chocolate, Vanilla, Coconut, Strawberry, Peppermint Paddy, Butterscotch, Cookie Dough, Pancake, Cherry, Chocolate and Caramel.

I have Caramel in my cupboard and when you turn open the lid, it smells like delicious caramel.  This product does contain sugar alcohols, so please be careful when giving this to your little one, sugar alcohols can create glucose spikes in some keto kids.

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My Warrior Princess

Gabriella’s Story Part Three

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So my warrior princess has now been on the ketogenic diet for about 4 months and it’s really becoming a way of life for me. I won’t lie, the early days were a bit of a hack what with all the pedantic weighing and measuring of everything, not to mention my determination to ensure she ate all her meals and finished her bottles. I stressed my self out to be honest. Then one day I made the decision to let go just a little… Obviously not on the weighing and measuring but on making it my life mission for Ella to finish every last bit of her meals. It was liberating I must admit, I thing Ella felt it too as she started fussing less and even started enjoying her food a little more.

The most empowering moment however, was the day I learnt how to calculate my own menus and meal plans. I felt like I had just been given a super power… It was awesome!!! I spent hours on end experimenting both on the computer and in the kitchen. We have now found a few winners and a few…well, not so much!

Having a baby/toddler on the diet is a little challenging in my opinion as recipes are not as easy to come across… Especially when you have a little fuss pot… So I have made it my mission to put together a good variety of baby friendly recipes that are Ella approved. Not only on purée form but also transitional for finger feeding. Watch this space as I’m a mamma on a mission!!


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<3 Ella’s Mom, Nicole Dry


La Heavenly Homemade Vanilla Soft Serve
Product Review

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I found this product thanks to the UK parents on the Facebook group Childhood Epilepsy -The Ketogenic Way.   This is one of those amazing products that can add a lot of fat to a meal without knowing it is there.  And who does not love ice-cream!!!  I found if you choose the vanilla flavour you can add anything to it e.g., fruit etc.

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Mix a packet Le Heavenly Homemade Vanilla Soft Serve Mix with 600 g Woolworths Double Thick cream and 150g egg.  Use a sweetener of your choice to sweeten.  Mix for a couple of minutes and place 70g into freezable Tupperware.  This freezes rock hard so I would suggest taking it out of the freezer an hour before eating.  The ratio that I worked this out is 5:1 so I add a fruit for Keilah and give this as a snack option.  One packet makes 8 meals (snacks).  Also, if you have an ice-cream maker the texture is more like real ice-cream but you don’t have to have one.

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I bought this product from LowCarbMegaStore using PayPal and waited 6 days for my package to arrive.  Really so worth it and easy it use.  Please contact the Keilah Foundation to get contact details.

Have a lovely and seizure free week ☺

Belinda

 

Gabriella’s Story – Part Two

Gabriella’s story continues

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Despite this rocky beginning, slowly, slowly, she got stronger. But it was a minute by minute growth and I still battled intense demons. Why had this happened to us? Surely we didn’t deserve it. I sometimes blamed myself. I read up on everything to do with preemies and talked to my doctor and nurses constantly so that I understood as much as possible, I believed knowledge was power and I needed as much power as I could get. As the weeks rolled on, our routine became much more bearable. Enjoyable, even. Doctors started saying things like “when she comes home…” which doesn’t seem like much, but it was like angels singing to me. It meant they were certain she would be coming home. She was off of the ventilator and breathing on her own without assistance from CPAP and I could even nurse her! Things were really looking up, she had surprised us all and all the staff were talking about her strength and how she was such a little fighter. These conversations healed my aching heart more than any medicine could ever do and I revelled in them. 

Then, July 31st, 2013. 75 days after she was born and on her actual due date, we were told that our daughter could go home. Poof! Just like that, she was ours. Not the doctors’ or nurses’, but ours! I had little fear that she’d go and do something stupid like stop breathing. Maybe it was foolish, but I had total faith in my angel’s strength and determination. She was home. And she thrived at home. But we soon found out that having her home was almost as hard as having her in the NICU. Due to missing out on the last 11 weeks in utero, she had an immune deficiency. Even a simple cold could land her back in the ICU on a ventilator. So we were on lock down. We didn’t take her anywhere and visits from family and friends were few and far between.

The weeks and months to follow were full of check-ups and physical therapy. This is when we were told Ella had neurological issues as she was developmentally delayed and had a degree of spasticity. It seems she will very likely have cerebral palsy but we will need to wait until she reaches about 2 years before we have a better idea of the extent of the damage. Just as I thought things couldn’t get any harder, I started noticing that she was having strange “startle” type movements. At first I assumed they were harmless, but the more I saw them I got a sick feeling in my tummy because deep down I knew there was something wrong. I started to suspect infantile spasms and was terrified. Through my research I learnt about the ketogenic diet and decided to contact Kath and ask for her advice and help. We decided to start the diet after an abnormal EEG result and amazingly the “startle” movements (infantile spasms) stopped within 2 days. We then flew to Cape Town and had another EEG and Dr Butler agreed that the diet was a good option for her as well as a low dose of Epilim as she was still having focal seizures.

We have now been on the keto diet for 2 months and thankfully have had no more infantile spasms however we are still trying to control the focal seizures. I am both positive and hopeful that over time she will be completely seizure free. I am so grateful for finding Kath as she has been amazing and her team has been so helpful and supportive through the difficult times. 

Ella’s mom (Nicole Dry)

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Gabriella’s Story – Part One

Gabriella: God Gives Strength

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My little Princess was born at 29 weeks weighing 1,26kgs. Her early days in the NICU were easy, or so I thought. When she was born, she was amazingly breathing on her own after only two days on the ventilator. I was told that was a good thing and I was running on a false sense of security, delusion and loads of adrenalin… I thought we would sail through it without any problems whatsoever. Sadly, I wasn’t aware that it’s quite common for things to go really well in the first few days… They call it the honeymoon phase. I even got to hold her. It was the most amazing moment of my life. Nothing like what the first time was supposed to be, though. She had tubes and wires that beeped and whooshed everywhere and I couldn’t move her much, once I had her in place. But her nurses were wonderful and helped me to forget that she was so tiny. I even managed to forget we were in the loud, scary NICU for a few fleeting moments. But then we experienced her first hiccup and I crashed…

I was so freaked out and petrified, I cried a lot and even struggled to see her because I would just crumble. We experienced the most gut wrenching fear and pain at two and a half weeks that snapped me back into reality. Our Paediatrician came into my room and sat down to talk. Ella had suffered a pleural effusion and she had worked for 5 hours trying to resuscitate her. They were able to revive her (“like, from the dead?” I remember thinking), but she was on a ventilator and had an emergency underwater drain in her chest to try drain out all of the water. She wasn’t able to tell me if Ella would be okay, which was the hardest truth to hear when all you want is to be told is not to worry and that everything would be fine. I don’t remember much from that day aside from refusing a sedative the nurses were trying to give me and laying in the hospital bed with my husband, promising to each other that we’d get through it together. We prayed nonstop all day while I constantly fought away any negative thought that persistently kept creeping into my head. Our little warrior princess did indeed survive the effusion, but her outcome was still much unknown. We were warned that babies as sick/premature as she was, could have any number of lifelong problems. This was my biggest fear.

Ella’s mom (Nicole Dry)

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Product Review

Scale | Spatula | Silicone Chocolate Moulds

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I am always trying to save where I can, but if you want a project to go smooth, effortless and without any hiccups you need the right tools for the job!!! The first thing is:

THE SCALE.  Ah, my trusty friend.  We have come a long way and I have changed batteries twice.  A good quality scale is needed to measure in grams.  My scale measures in 0.0g, which is very accurate.  The scale also needs to be able to work on batteries so that you can weigh out a meal anywhere you go.  I have actually never plugged my electric cable in.  It also needs to be a durable scale that can take being handled every day.  

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Spatulas are helpful with scraping the last of the food out of the mixing bowl.  This is how you get all the precious fat out.  No more leaving the last spoonful in the bowl to lick out!  I have four spatulas in my drawer in order to make sure that I always have a clean spare on hand.

Chocolate moulds are very useful for our wonderful fat bombs.  The fat bomb recipe I use is 25g of coconut oil (heat in the microwave, as it must be in liquid form) and 11 g Nutella.  Mix it and pour it out into funky chocolate moulds.  Place moulds in the freezer for a half hour and you have delicious fat bombs.  I have bought a couple of chocolate moulds at Checkers that I use over and over.  You can also make jelly sweet with Low Cal jelly and gelatine.  This will be very similar to jelly teddies in texture and you can also add liquigen or cream to make the fat content higher.

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Binding Agents

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I tried to make some keto rusks for Keilah in the week… well it did not turn out the way I had imagined!  Let’s just say I envisioned a rusk that did not end up as a pile of crumbs when picking it up!!!  So I bought some rusks (for hubby) and phoned the number on the packet to find out if anyone could give me advise to what I was doing wrong.  It turns out I need a ‘binding agent’ because I was using Almond and Coconut flour (which is regarded as gluten-free baking).   When using these flours, your amount of liquid needs to be double the amount of flour.  Also, you usually bake rusks that use normal flour for 45 minutes at 180 degrees but these flours only need to be baked for 30 minutes at 180 degrees. Okay, so now for the “binding agent” part… usually it is a matter of personal preference but there are different qualities to each that can affect the end result of the binding ability of the rusk. Most often breads/rusks are made exclusively with xanthan gum and have a tendency to feel or taste wet, even when completely cooled. Breads/rusks made with guar gum as the only binding agent can sometimes collapse or become very dry. As mentioned above, sometimes using a combination of guar gum and xanthan gum is required to get the best end result.

Xanthan Gum

Screen Shot 2014-07-10 at 7.15.43 PM If you use too much xanthan gum in a recipe you may notice a heavy, gummy or even slimy texture in your baked goods – so measure carefully when using xanthan gum. People with allergies or sensitivity to corn may be advised by their physician to avoid xanthan gum. Xanthan gum also generally costs almost 3 times as much as guar gum.

Guar Gum

Screen Shot 2014-07-10 at 7.15.43 PM   Guar gum is high in soluble fiber and has eight times the thickening power as corn-starch.  Like xanthan gum, measure carefully when using guar gum in gluten-free recipes or you may end up with heavy, stringy baked goods. Guar gum is a high fiber product and has been associated with gastrointestinal upset in some people.

General Tips for Using Xanthan Gum and Guar Gum in Gluten-Free Cooking

  • Bread, rusks and pizza dough recipes: Add 1 teaspoon xanthan gum or guar gum per cup of gluten-free flour used in bread and pizza dough recipes
  • Cake, muffin and quick bread recipes: Add 1/2 teaspoon xanthan gum or guar gum per one cup of gluten-free flour used
  • Cookie and bar recipes: Add 1/2 teaspoon (or less) xanthan gum or guar gum per one cup gluten-free flour used

 

Having a back up plan

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Hi all, I hope you and your little ones are doing well! I want to chat about having a couple of back up plans regards to certain situations. It is helpful if you have a plan set out in situations that you don’t have think about it. The first scenario is if your child snuck in a sweet or something that they should not have eaten. I have spoken to Keilah’s dietician and in Keilah’s oil Tupperware that goes to school with her; I have put in an extra syringe with 3ml MCT oil. The school will administer this to her in the case of her eating something she shouldn’t have. The second scenario is if your child is sick. I have discussed this with Kath (Keilah’s dietician) and she has suggested giving an extra 2ml oil every 2 hours when Keilah is feeling unwell. Also, discuss with your dietician/paediatrician what type of pain medication, fever medication and tummy pain medication to have stocked in your cupboard (kids usually get ill in the middle of the night, but I am sure you know what I am talking about). All the medications need to be sugar free so make sure you use a pharmacist you can trust. I made the mistake once and bought a product for teething as a new chemist told me the product was sugar free… Well, when I got home and gave it to Keilah, she started having seizures and at this time of the day, her ketones normal is usually 6.1, hers was now 1.5. Needless to say, I did not ask that chemist for help ever again! Third scenario is when ketones are too low or high and what to do in that instance. Fourth scenario is what to do if glucose are too low or high and what to do in that instance. It is very important to know that in any of these scenarios you can cope with it on a keto friendly way without being stressed.

Taking Ketones

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I know… it feels awful to prick your child to get ketone and glucose readings! My husband flat out refused to do this in the beginning of the initiation of the Ketogenic diet, but now does it because this helps Keilah. Taking the reading of ketones and glucose in this manner, are unfortunately much needed as without these reading, your hands are cut off. Giving a couple of millilitres of oil or juice, depending on what the reading says, can mean that seizures are stopped and a pattern emerges to tweak the diet. I am one of those mothers who first have to test everything on myself before trying it on my child. It does not matter if it is finger pricking, tasting MCT oil, Ligiuigen, Ketocal, Nutilis or supplements… I do it all before giving to Keilah. The trick with finger pricking is to rub the finger point for about a minute and then prick your child’s finger. This helps numb the pain of the prick, as you don’t get that stinging feeling as you would usually after a prick and the prick itself is not sore at all. Another tip is to not use the same finger to prick every time and continuously rotate the fingers you prick. If you keep on pricking the same one or 2 fingers, the skin on those fingers gets hard and overtime becomes more difficult to prick. You don’t want your little one sitting on your lap being pricked more than they should. I also try and distract Keilah by showing her something or telling her a story. I usually tell her about Sleeping Beauty and that include Keilah in the story as being a very brave and precious little girl. If you use urine sticks with babies then I would recommend putting cotton wool in the diaper. You need to put the cotton wool in the right spot in order to absorb the urine. Also change the diaper quickly after urination. As this can be very tedious, the blood strips can be used as an alternative method, which is much quicker and very accurate. Have a blessed seizure free week.

From Belinda & Keilah

My Keto Journey

Our Journey

Hi all, My name is Belinda and I am a parent just like any of you.  Well done that you have been brave enough to choose the Ketogenic Diet for your child.  Yes!!!!  Brave enough!!!  I know, that for a lot of you it has not been an easy decision to make.  We all have been flung into this this epilepsy world where we need to become knowledgeable very quick regarding med-side effects, seizure types and being lead to what is the best course of treatment for our child, not just for now but also for future progress and outcome. I did so much research regarding the ketogenic diet and got so excited with every success story that I read, I could see in my mind’s eye Keilah’s little face also being a part of that group.  So, we decided that we are going to do exactly what Kath (Keilah’s dietician) tells us to do because this was going to be a success and Keilah’s seizures were going to disappear.  Yes, we put the words out there!!!! Please don’t be upset when a typical keto meals maybe goes like this.  Sometimes you are so chuffed that this is a brilliant meal and your child is going to love it.  And then, your child gives you one look that expresses the fact that this is not going to happen.  They are not even going to try a taste of it!!!!  Arghhhhhhh   This is very disheartening and I feel your pain!  Especially if you have done research, spent time weighing everything out, making sure there are meat & veggies & grains and desert in one meal (making sure the meal is balanced you know) Including that the meal actually looks appetising and also not trying to burn it (in my experience)  To get everything PERFECT because you know that if you get this exactly right that this means that your child may not  have a seizure and that is what we are working to achieve.  Not every meal is like this!  Then you get other meals that are like hitting it out of the park J Starting the Ketogenic Diet process, we sometimes forget that they are dealing with children with specific palets.  They too are also discovering what they like and don’t like.  My huband HATES beetroot and liver, I myself are really fond of the 2.  So we need to be gentle on our little ones and ourselves that are on a exploration expedition too.  A very scientific expedition that can take away your child’s seizure. Never force a child to eat because that will create problems.  Did I just up your anxiety levels with a few degrees?  I know my anxiety was sky high because not only must your child eat their meal but eat every single bite!  A very wise dietician told me that a child will not go hungry and eventually eat when they are hungry.  So be calm and patient when giving the food and if they don’t want just stop and try again later.  Try distraction as a method and always be positive.  Have a lot of keto friendly food in the house if you quickly need to make another meal for some reason.  It also helps if your food looks like your child’s meal, it does not have to be the exact thing but toddlers like eating off your plate. Good luck everyone and you have been doing an awesome job.  Please send us pictures of your brilliant meals so that we can share them to make the journey easier for everyone.

Hiding Fat In Keto Meals

My Keto Journey

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Hiding Fat in keto meals

This week I have been trying to hide FAT in keto meals.  I great way to hide coconut oil is in Nutella fat bombs.  This only uses 2 ingredients, Coconut oil 22g and Nutella 10g, this is on a 4:1.  Weight the ingredients out and mix them in a bowl, you can also add a couple of drops of sweetener.     Pour into chocolate moulds and freeze in freezer for half an hour.  Usually I just remove it from the mould and keep it in a BPA free Tupperware in freezer.  Mine don’t last long and usually gets eaten up very quickly and have to make a new batch every second day.  You can also keep them in the fridge if you like. Another clever idea is to add the cream to the sugar free jelly.  It is very fun to pour the mixture in creative moulds.  The cream can also be used as milkshake.  You can add nomu cacao with sweetener or some coconut milk and sweetener. Also, it is much easier to hide the total amount in oil in a muffin recipe or pizza recipe.  There is a lot of yummy and fail prove recipes and I have attached a pizza recipe of Keilah’s. She loves this pizza and it is on a 4:1 ratio. You could also create a reward chart and if all the oil or milkshake has been drank then the reward would be a toy or outing to a favourite place. I have invested in a waffle maker over the weekend and can’t wait to make my very first waffle and cream for Keilah.  You know how it goes, so I hope this is a great hit with my little girl. Good luck with your week and a blessed seizure free week to you all.   image

Marko in hospital

Marco’s Journey – Part 1

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On the 13th March 2013 at 16:30pm, our beautiful baby boy Marco Luiz Pinheiro was born at 39 weeks after a very healthy and uneventful pregnancy at Sandton Clinic weighing 2.92kgs. We were delighted to have another child, but also rather nervous at the thought of having three kids to raise and educate. Marco had not been a planned pregnancy, although an unexpected gift from God which we embraced. Marco’s first couple of months of life where also uneventful. He was healthy, relaxed and an easy baby. Put on weight regularly, very easily content, although not a good sleeper, which was unusual for us, as we were very spoilt with our other two children as they slept through by 3 months. However, the joy of having a new born baby filled our home, and the dynamics of having a bigger family also settled pretty quickly with everybody knowing exactly what was expected. Marco has two older siblings – brother – Luca (7) and sister – Emma (4) and they are besotted with their beautiful baby brother. Although Marco was growing beautifully from a physical perspective, by 6 months of age we noticed that Marco was not very responsive both physically and emotionally, and we started to be concerned. However, I kept reminding myself that all children are different and although I didn’t want to jump to any conclusions, maybe a way of protecting myself…. I realized that we needed to start investigating if there was in fact something wrong. We took him to an Opthalmologist – Dr Gideon Du Plessis at the Pretoria Eye Clinic, and he picked up that Marco had a condition called a Duane Syndrome. Duane’s syndrome is a congenital rare type of strabismus most commonly characterized by the inability of the eye to move outwards. He also recommended that we do an MRI to check the Brain, Optic Nerve and Orbits. Everything came back normal. However this would not explain his unresponsiveness and lack of development. We continued to investigate further… We then took him to an audiologist – Celeste De Freitas, for her to assess his hearing. The appointment was very heart wrenching, and emotional. Although Celeste picked up that there was auditory response, she was very concerned and felt that we needed to get to a neurologist as soon as possible. I left her rooms in floods of tears, and immediately booked with my paediatrician for Marco’s 6 month checkup. Marco at the time was 6 and half months old. That same day we got to see Dr Patrick Li – Paediatrician. He also mentioned that due to the fact, that he had such low muscle tone, could not hold his head upright, and push up with his arms whilst lying on his tummy, he was concerned that developmentally there was something not right, and the only person who could clear this up was a Paediatric Neurologist. He gave me 3 Paed neurologists telephone numbers and sent us on our way. I tried immediately to obtain an appointment, and they were all fully booked for the next 3 months. We were now in early Oct 2013, and the earliest appointment I could get was end of January 2014. I was devastated and tried all possible ways via family and friends to see if anybody had an influence to try and get me an earlier appointment, as there was no ways I could wait for three months, not knowing what was actually going on with Marco’s brain. We noticed from time to time, that he would get “sudden frights” and when I mentioned it to the Paediatrician he said it was a startle reflex… “all babies have it, it will eventually go away”. Eventually – 3 weeks later there was a cancellation, and on 25th October 2013 (My Mom’s Birthday), we got to see Dr. Dorcas Wilson – Paediatric Neurologist at Sunninghill Hospital. Dr. Wilson is part of a team of three doctors who work together and are highly rated in their field. She asked questions, examined him and immediately diagnosed him with Infantile Spasms/ Epilepsy aka West Syndrome. She held no punches. Told us that he had to be admitted immediately and she wanted to monitor him for about 3 days and do an EEG to see his brain activity. She also told us to prepare ourselves for a long road as the treatment is heavy and lengthy. Marco’s slow development is directly related to the seizures, and that there may have been some damage to the brain already. He will probably need help throughout his developing years, school, etc. There is nothing they can do about that but it is imperative that they stop these seizures as soon as possible in order to prevent the brain from further harm and thus allow it to develop. All his gross motor skills rely on brain development, so the key is to treat as aggressively as they can (considering all risks and side effects), stop these seizures, monitor his response to the treatment, and then plan a course of action. We left the Drs rooms in absolute shock and devastation, and admitted Marco into the peadiatric ward at Sunninghill Hospital. When they did the EEG he was asleep and it showed his brain activity as extremely busy… Not good. Two days later everything went pear shaped. He had his worst seizure ever. He had a cluster, which is multiple seizures over a period of time. I counted over 40 seizures over a period of about 50mins, and the Dr was present for about 30mins, also video recording the seizures. They watch and wait to see how he gets out of it, but if it takes too long (like over an hour) then they intervene. They medicated him and moved him to High Care where they continued to medicate and monitor him closely. The meds they gave him sedated him for several days, as they monitored him. During one of his seizures he may have ingested some mucous into the lungs because at High Care they found him wheezing and congested. X-ray showed a section of his lung had collapsed due to the thick mucus in that section of the lung. They did physiotherapy and nebulized him and sucked up a lot of mucous. Our poor little man was lying there in deep sleep and they’re doing physiotherapy on him, then pricking him to put in a main line, drip in his head, tube down his throat, wires everywhere. We were heartbroken, and along with this we had two other children at home who were also going through turmoil in their own minds not knowing when there baby brother was going to come home… And Mom and Dad who were always at the hospital. Family and friends assisted with looking after them, but our home life had all of a sudden changed. They started running blood tests, metabolic screening, lumbar punctures, CT Scans, more MRI’s trying to establish the etiology of the diagnosis. Marco remained in High Care for 10 days, as they stabilized him and controlled the seizures. They put Marco on ACTH (Steroids), and Sabril (Vigabatrin) to control the seizures and monitored him closely. We were devastated at what had happened in just 48 hours to our precious little baby, and how our lives had been turned upside town.

Blood Ketones

By Belinda Hall

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Blood Ketones With the Ketogenic diet, one needs to monitor ketones and glucose levels. You read ketone levels with urine or blood ketone sticks. For a parent wanting to have an accurate reading, I would currently suggest that you choose the blood ketone sticks, but different dieticians have different methods and it is suggested that it’s best to work with your dietician on making the best decision for your child. When you start the diet, the ketones should usually range between 4 and 6. The higher the ketone level, the better; but not always as every child’s body is different and might react better with lower ketones. The most accurate results are taken 20 minutes after your child has finished eating a meal or first thing in the morning, in order to get a base line. I would also always take the glucose readings when you take the ketones readings too, because monitoring and logging all of these readings can help identify patterns. It will always be about tweaking the diet at different stages. When the ketones are too high, I usually give Keilah 10ml juice to bring her ketones down by 1. It is always safe to discuss a plan with your dietician in case such a scenario happens before the time, as then you will know what to do if it happens. Ketones that are too high will cause ketoacidosis. High levels of ketones cause the blood to become more acidic. Some kids won’t even have to have high ketones for ketoacidosis to occur. Symptoms ketoacidosis are: – Not being alert, – Not being interactive, – Lack in energy level, – Rapid breathing (hyperventilating) – Nausea – Vomiting When any of these symptoms occur phone the paediatrician and dietician immediately. Glucose levels should also be between 4 and 5, but like I have stated, everyone’s body is unique and this might differ depending on the child. If Keilah’s glucose is above 5, it would cause her to have a seizure. There are two different scenarios that create high glucose levels. The first scenario is if Keilah is coming down with something, her glucose is higher and the next day the symptoms of that illness would appear. The second scenario is if she had a meal where a fruit has spiked her glucose. Writing down all these levels might sound very tedious, but it will help so much with patterns regarding your little one. Good luck with your week and a blessed seizure free week to you all! Belinda Hall

Part 2

Marco’s Journey – Part 2

My Keto Journey

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The medication stabilised Marco, and he ended up staying in hospital for 21 days, until we were absolutely sure that he was on the correct meds, dose and stable. By mid-November, we had been discharged and with loads of medication and portable oxygen in case Marco battled to breathe, and received an action plan in the event that something went wrong. My husband and I were on tender hooks – constantly worrying about Marco and at times too frightened to go to sleep in case something happened. Luca and Emma were delighted to have Marco home again and at one point my oldest son said, “Mom, I am so happy that we can now be a family again”. My heart broke for my children, as their lives had been turned upside down. I immediately began to spend my waking moments doing research into this condition; “Googling” every website I could find, linking in with other people who had had children with the same diagnosis, going into “Online chat forums” and networking with other Moms & Dads who were willing to assist with and advise best possible outcomes. I found this to be beneficial as I was proactively trying to find ways and solutions to help my son. I also met people who had walked a very scary road, and they gave me good suggestions and contact numbers of therapists; dieticians; homeopaths; physicians; occupational therapists who specialised in CVI (Cortical Visual Impairment), a condition that also affects children with seizures; who had helped their families. We spent a very quiet and family focused Christmas and December 2013 holiday trying to regroup and consolidate our fears and expectations – not knowing what the future might hold (not that we ever do). In January 2014, Marco, started doing Neuro-developmental Physio with Sandy King, twice a week, Occupational therapy and swimming. At this point I was also given Kath Megaw’s details – Paediatric Dietician – and after an in depth telephone consult – I was convinced that I needed to get Marco onto the Ketogenic Diet! Marco was still having the odd break through seizure from time to time, and Kath assured me that the diet would help with this, over and above the fact that it would protect, restore and help build his neurological pathways. I must say that the diet agreed very well with Marco and the tiny “twitches” and odd break through seizures became a thing of the past! However when Marco gets sick (common cold, tonsillitis, high fevers), we are on high alert, and then we still see the odd seizure. We have spent the past few months doing everything I have mentioned to try and assist Marco as much as possible. Marco is now 14 months old, and he is certainly more responsive and happy, loves rolling from his back to his tummy and back again, is trying hard to push up, and is sitting with assistance! We realise that this is going to be a long road, but we are hopeful that with all the therapies and effort from all of us, Marco will in time be able to sit on his own, crawl and hopefully walk. We are very blessed to have a wonderful and supportive family. Our friends and therapists have also been very supportive and encouraging. I have to say that Dr Dorcas Wilson our Paediatric Neurologist has been amazing to us as a family. Her professional care over Marco has been unbelievable! God willing, I pray each and every day that Marco will grow up to be healthy, happy and independent human being, and live a full and generous life…..

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