Travelling

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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

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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).

http://www.bbcgoodfood.com/recipes/7603/panfried-duck-breast-with-creamed-cabbage-chestnut

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

Confessions of a food maniac

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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

MAD

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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?

 

 

Changing

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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.

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Trout with Asian greens

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I ate some lightly steamed gai lan covered with soy sauce and toasted sesame oil last night. Caspian decided to steal some, which might be attributed to the amazing smell of the sauce. I decided to take a gamble and make some for Caspian. So what follows is the result. I must say I am surprised at the volume of vegies that I calculated for him. He didn’t eat all of it as it got cold and perhaps not so yummy, so I would say start out with a small amount and test your ketokid to see if they like it. If you just wanted to serve a bowl of Bok choy for the carb serve it can get up to 50g + which really impressed me. This is 372 Calories with 23 g of protein a day. The Bok Choy would be fabulous in a stirfry…..

17 g Trout

17g Carrot Moroccan  by Pilpal

22g avocado

18g Mayonnaise

15g coconut or fish oil served separately

2g Soy sauce or Tamari ( wheat free soy sauce)

16g Rice milk to be served separately

15g Bok Choy

I pan cooked the trout for the whole family and simply weighted out the amount for Caspian. Place the mayonnaise on top of the fish. Place the avocado and carrot next to the fish. Steam the bok choy last and drip the soy sauce and sesame oil on top. The oil and rice milk (or almond milk) are to be served separately. Enjoy!

These are the values I found on Calorie king for 100g trout: Protein 25g, fat 6g,0g of carbohydrate. For 100g of steamed boy choy: Protein 1.5g, 0.1g of fat and 1.8g of carbohydrates. Please check these values yourself and run it by your Dietitian if you are uncertain in anyway.

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Quick vegetable soup

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Caspian ate a carrot yesterday. A big fat whole one. He really gnawed it and his face went orange and little bits dropped onto the floor. After he got to the stub my brain woke up and I realised that he had taken the whole carrot and not a slither that I had offered him.

Caspian has been waking us up and 445am for the last 9 days so my brain was in reverse when this happened. I started to cajole myself that it was ok, he would be fine… he wasn’t. After 2 small seizures on Monday, at 4 am Tuesday Caspian threw a big tonic clonic so we rang the ambulance and trundled off to hospital. Bum. Ok, it wasn’t just the carrot, we had just dropped his Topamax last week and this may have not helped, but thats a boring story so …. shh.

I am Old Mother Hubbard at the moment, my cupboard is bare. I am OVER cooking, for anyone. This little recipe is a desperate “what is left in the back of the fridge?” recipe. It is not deeply creative or inspiring but it has a bounty of beautiful vegetables and that is so fabulous.   Broken down it is vegetable, choice of fat , layer with protein. 372 calories, 23 grams of protein a day at a 4:1 ratio.

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Carrot 39 grams

Animal fat 34 grams, split into 20 grams pork fat and 14grams fish oil.

Beans 24 grams

Peas 14 grams

Egg 33 grams ( or meat of choice)

I cooked the vegetables first in water with chicken that I was cooking for the  flavour with a sprig of parsley. Create an omelette with the egg.

Weigh out the vegetables, weigh and slice layers of omelette. The soup can be whole chunky vegetables with omelette on top or pureed. If your child prefers vegetables chunky consider whisking in raw egg rather than creating an omelette.

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The odd bit is using fat. I split my pure fat into fish oil 1/3 and animal fat 2/3 roughly.   Caspian loves pork fat diced (I blame his Chinese grandmother) I leave it whole in his soup as he loves munching it.

Serve with a side of fish oil.

This is what Caspian eats now and I was a bit too embarrassed to share it with you for a while, but there you have it. I do many versions of this, with chicken and shallots and other lovely veggies.