Recently Caspian’s big brother Max, asked me if I wanted Caspian to be normal like him, ever? Thankfully I asked him “Why?”, “you seem to love him as he is” was his reply. Little did Max know I had been striving and straining for that end result. It had cost me a lot of tears to love my little warrior as he is. With his wild ways, sharp elbows and sleeplessness. De Martini talks of parts of yourself you disown or don’t like will appear and reapp ear in your life until you embrace it. For me it was conflict, overvaluing intelligence and appearing to be a good person (shame/pride). On the wisdom of my heart and a good friend I have strived to love and accept Caspian as he is. Naturally I still have moments & days were I really resent his behaviour, I would be lying to say anything else. However, I am changed for the better. (feel free to sing with me). Now I see a bright shining warrior boy. He’s regaining his lost height; he has beautiful strong body and delightful face. He is cheeky, strong willed and loving. He is so changed from a few years ago. Now it is a delight to watch him move. He runs swiftly, climbs, jumps like a madman, scoots around the block!

I still yearn for the day he wakes from a seizure and he doesn’t stammer terribly like he did this morning, I yearn for all the words he has learnt to be accessible to him and I yearn to chat to him. But for now I am content. He is beautiful, happier and I am too.IMG_4203

Let’s rest here awhile


Fatigue set in.

We decided to rest awhile.

Caspian took 10 weeks to wean from about 12 grams of carbohydrates a day up to 60 grams ( but I fudged from 45 grams)  and then to wean down off the fat. It was more of a cliff dive at the end. He is a happy little fellow now with his face full of carbs.

His seizures stayed low for a while but they are more frequent visitors now.

It was just over 2 years on both diets. Caspian definitely benefited for being on the diets. Especially the modified atkins. His language is at times fabulous and a little bit complex. He got to say goodbye to a drug that did not agree with him. His gut and asthma improved quite a bit which was a fabulous bonus ( best bit). He had a decrease in seizures. Would I recommend trialling the MAD? yes, yes and yes.

Guess what ? he still loves his fat.


I have moved my thoughts over to my new blog Joyful purpose, a significantly less specific blog.

May you find the miracles you need, XXX Mary-Anne




Well faithful travellers, you may be wondering where I have been? I have been to BLAND land and it was so boring there I did not feel like sending you a postcard.

Caspian and I took a small excursion to Spice city, accidental exposure to MSG mountain and the return journey was a disaster!!! Combine delicious, spicy exciting morsels with snot and you get misery in the thousandth degrees.


I chucked a tantrum on Wednesday, pronounced that it was all over. No more Ketogenic meals were going to be made by my hands, No, No, No, No! That beloved man of my mine took over and cranked up the fat and pumped out some meals and Caspian has improved. His behavior and speech picked up, his interaction with friends was spot on for 4. Obviously the ketogenic meals still work and are needed. This tantrum of mine was really about the necessity and ongoing validity of this diet for Caspian. Is it still serving a purpose? Yes. I shall trudge on .

 My fellow parents, how often have you struggled with this diet yourselves? It is a relentless, somewhat cruel deprivation and I confess; I hate it. And yet, I frequently weep with Joy at the gradual steady healing my little man is undergoing.  It is like being split in half, one side KNOWS with certainty the need for the restricted foods, the other side of me wails and fights the misery I feel I am putting him through, and the continuous work, work, work of meal preparations. Bit of a complainer aren’t I?

I’d love to know those of you parents travelling this road are going….


XXX Mary-Anne



Roast Duck


Duck; it is delicious, easy to cook and naturally nice and fatty. In Australia Duck is sold in the major supermarkets under the brand name Luv a Duck. They also sell tubs of duck fat. Grab the duck breast with skin.

I pan fried a nice piece of duck breast with skin and then popped it into the oven for 20 min. One option for flavor is to squeeze a little orange juice onto the skin and add salt.

It is shocking how much fat comes out! Save this fatty dripping and ladle it on top of the meat at the end for further fat. Be aware Duck is unforgiving. If you over cook it, it will shrivel, harden and be unpalatable. The microwave is particularly good at killing duck. Watch what temperature you cook that duck at as well, too hot and the fat burns and no Ketokid wants to eat that.

I haven’t given a specific recipe today- just ideas.

Duck fillet with added duck fat on top or another added oil.

Roast carrot – 30 grams or Roast pear or beetroot.


This is a great recipe from the BBC, obviously you must leave the sugar out. Cabbage and pear are both low carbohydrates and great for low allergens too (except for wind creation).

Caspian loves the duck and I am wondering if anyone else is using it extensively?

Confessions of a food maniac


How do you end up with nasty asthma, terrible diarrhoea, horrific epilepsy and serious food intolerances?

And how the hell do you fix that?

You dance naked drenched in wine in the light of the full moon, opps no – wrong blog.

This is how I have begun.  With the assistance of our fantastic hospital Caspian has gained a great amount of epilepsy control using the Ketogenic diet and then the Modified Atkins diet.  An awesome beginning. In Caspian’s case this has helped control his epilepsy but exacerbated his diarrhoea and asthma to catastrophic levels. As you may remember he began to avoid food extensively in November last year. Caspian refused food so much that he was eating pork fat, meat and rice milk almost exclusively. This state of affairs was not safe nor sustainable.

Enter the Royal Prince Alfred Hospital (RPAH) allergy elimination diet. This is a brilliant system that assists you to identify which man-made and natural food components set up asthma, gut symptoms or eczema in your child. By April this year (2013) I had a good idea of which triggers bothered Caspian.  The miracle was his return to eating a greater variety of foods. His asthma for the first time in his life faded away. Sleep, that elusive treasure began to be in decent, uneventful chunks.

I next turned to his gut. He was still in a bad way with diarrhea/ constipation ( thanks to the ketogenic diet). Lets just say my nose and everyone else on the block, knew all was not ok in that department. Many complementary health practitioners would say that true health begins in the gut. In a way I have arrived at the true problem with Caspian last. Enter the Specific Carbohydrate diet (SCD) and the Gut and psychology syndrome diet (GAPS). Gaps is built on SCD. These are specifically designed to allow intestines to heal. In May after starting the Atkins diet I removed soy milk & rice milk from Caspian’s diet. Really, I did little else. It has had a remarkable effect, and my nose knows it. Lets just say that things are moving in the right direction with Cas’ belly. I have been paying attention to the speed of which his carbohydrates are taken up too… this is Low glycaemic foods.

And guess what, his epilepsy is even better than ever!!!! Not the same as on the classic ketogenic, but better. 

Now that I have got that off my chest I can return to actually serving you food, not words for posts..


Each of these diets has multiple books, websites, forums and facebook pages dedicated to them. Rpah has done its thing since the 1970’s. SCD had it beginnings in material dating from the 1940’s, The ketogenic diet goes back to ideas from the 1920’s and 30’s. This stuff is not new. It all has strong science behind it. Never in a million years would I believe I would combine the information from 6 serious and profoundly important diets to help my smallest son begin in his journey of healing. And it is working.

Rpah allergy clinic– and book for New South Welshman. For the rest of the world it is beautifully put together by Sue Dengate in her ” Fed Up” series.

Sue Dengates “ Fed Up” and “ Fed up with Asthma”

Food intolerance network

“Breaking the Vicious Cycle” by Elaine Godschall

SCD website

GAPS By Natasha Campell-McBride

GAPS website

Gaps guide

USyd low glycaemic index

Ketogenic – Charlie foundation

Atkins for seizures



And the answer is ….

 MAD works for Caspian.

 It really works well for Caspian.

 What have I learned about transitioning from Classic Ketogenic to Modified Atkins that I can share with you?

 1 It is moderate protein, not unlimited, an easy thing to forget but important.

 For 5 weeks after the transition Caspian had 2 seizures. I was feeding Caspian a lot of protein. Then he fell apart in a crazy way. He then had 9 seizures in 14 days. Nasty.

 I suspect that in those 5 weeks Caspian was using the extra protein for body repairs and growth. After my little Prince had grown all the excess protein wasn’t needed- which naturally played havoc with his ketone production, hence the fall apart.

 2. Pace the Carbohydrates.  Initially I was giving Caspian his carbohydrates three times a day- this I suspect also temporally interrupted his ketone production – thus making seizures a possibility. I now give him his carbs a little bit all day. (Two grams of carbs at a time).

 3. Be suspicious.  Beware the easily absorbed carbohydrates.  Like rice milk & soymilk. Rice milk is low carb but I suspect would have a high glycemic index. Jasmine rice is more quickly absorbed than sugar- it has a faster impact than sugar on the blood stream! I removed this from Cas’ diet and I believe this is the true reason Caspian has had so few seizures in the last month.  More than anything I am focusing on low glycaemic foods- vegetables.  Caspian has dropped his topomax twice in the last three weeks; one tiny seizure was the result.

 What I find amazing is that Caspian has had a little cold this week and not a single witnessed seizure. Preschool is amazed at his involvement and word power this week, isn’t that so cool?!

The transition off the Classic diet was liberating but definitely unnerving. I feel the precision of the Ketogenic diet is like a training ground.  When you spend so many hours a week precisely measuring carbohydrates in foods and hunting for low carbohydrate options that your child likes it has an impact. The impact is imbedded knowledge of suitable low carb & high fat foods.  
This means I now adlib with Caspian’s meals on the Modified Atkins with ease. Life is so much more fun!!!! What has your transition been like?





IMG_7388It has been a big week for our little family.  Our world has changed in 7 days.

On Monday Caspian, my dad and myself went to our hospital for overnight telemetry (his other super grandparents came later). Telemetry is EEG monitoring of brain waves over time. Caspian was measured up and dotted with red texta. He had 21 electrodes glued to his head and 4 on his chest. Then he was wrapped up in bandages to prevent his little fingers from tearing them off.  That was at 11 am.

By 9 pm he had failed to have a nap, the melatonin I had given him had worn off and he had ripped the bandages off 4 times.  He and I were wailing in distress. I called it off. Last year he stayed up until 12am. I wasn’t doing that again.

Luckily we still managed to get some nice information on the little chap and our neurologist, David and I got a plan together. Caspian is changing drugs and he is finishing the Ketogenic diet and starting the Modified Atkins Diet, MAD.

For my global friends in the know, you understand how incredible and momentous this is. It is FREEEDOM. Little counting, no fasting between meals, unlimited fat and more protein- we can ad lib. Breakfast out, food off communal tables again & no panics when Caspian refuses to eat. Hallelujah!!!

What amazes me has been my response.  Joy. I’ve been dancing in the kitchen with utter abandon. Until the pressure was off I had no real idea how consuming and intense this diet has been. Please don’t mistake my relief for regret as it has been worth it.  I had committed in my mind, planned, to do the ketogenic diet as long as it took, much more than two years if necessary. Sadly Caspian seems to be in the group of kids that improves on the diet, but isn’t seizure free. The modified Atkins diet gives him the ongoing support of some seizure control and protection but in a more forgiving manner. The rigidity & tyranny of counting every scrap of food is gone… a collective sign has gone up in our house. Caspian has stayed in ketosis this past week and had only one seizure so things look good. Surprisingly he is eating less, not more- other than the initial gorging of 3 fried eggs and 2 ½ rashes of bacon (fried in fat) on the first day. David and I have had little conniptions trying to adapt to this freedom… what should we feed him, how much fat??? It is a guesswork job. After precision for eleven months, guesswork takes getting use to.

One story ends and another adventure begins.