Keto Chocorange Micro Mug Fudge.

This is my newest find, from my experimenting with ingredients in my kitchen.
IMG_20150226_231511

7g Allinsons wholemeal flour.
2 Eggs.
Teaspoon orange flavour.
30 ml double cream.
3 teaspoons hermaseta. Teaspoon cocoa powder. Microwave for 1.30 mins. (800w) may vary!

I served it cut up into chunks, with sweetened whipped cream as a dip.

I found it very moreish! My little Po loved it. It is his new favourite breakfast.
IMG-20150227-WA0001
Po is one now! I baked him a lovely birthday cake with two flavoured layers and two different flavoured creamy icings!

My hubby is currently still in the limbo stage, the hospital consultants don’t really know if they should allow him to go onto the Ketogenic Diet or if they want him to sample new drugs for them instead, poor bloke feels a little like a lab rat!

Thanks for reading!
God bless ūüėÄ

Finding our second wind.

Jah is doing great. He is loving his special interests lately, I still thank God everyday for his diet because it gave us our son back. With moving house and having a new baby I haven’t had time to blog lately but thought Id do a little post now, considering all is quiet and I have a little me time.

 

Since my husband got diagnosed with GLUT 1 I have been trying hard to make the diet as easy and simple as possible, with the two of them on the Modified Atkins Version of the Ketogenic diet I realised if I don’t make it simple Im in for a lot of hard work. We have been finding the diet very expensive too. My husband is constantly moaning about the price of the foods he now needs to eat. Men can eat so much too, I think his legs must be hollow, I don’t know where it all goes!

 

Jah was getting bored of chicken so I have invented a lamb dish that we all eat, (well sort of, I have less fat and spaghetti with mine!) I will post the recipe soon.

 

There has been good news from the community pediatrician who is linked to Jahs school, she reports that Jah has very minimal amounts of developmental delay now. This is due to his diet working, freeing him from the fits and allowing him to develop.

 

 

 

Thanks for reading. ūüėČ

Just before Christmas, Hospital Consultation.

Doctor re-diagnosed Jahs Todd’s Paralysis episodes, telling us they are actually Migraines, possibly the most awful Migraines to experience but still Migraines. This is something he has inherited from my side of the family and is separate to the GLUT¬†1.

The genealogy blood test that my husband and I had; The results were back. We had these test done to see where the GLUT 1 gene got passed to Jah from. The Doctor was actually able to diagnose my husband with Glut 1. They discussed the Ketogenic Diet being an option for my hubby because he still experiences difficulties with cramps in his legs and confused episodes when there has been a period of anxiety or excitement.

My hubby is a whole other story and one day I may write about him in detail but for now I think I should keep to Jah and his Diet.

Jah has been getting a lot of tummy aches.

Doctor was able to identify these pains as reflux and indigestion. Jah has two lots of tablets to take for three months to see if the problem resolves. My concern is that the fat content in the diet could cause a Ulser, hopefully the Medications he has been given will be doing some protection on this area and enable Jahs body to repair itself.

Todds Paralysis 15th September 2013.

Not even a week through the Epilim wean off.

My lovely lad had a Todd‚Äôs¬†Paralysis; He was so very frightened asking me to call an ambulance in his slurred voice. The whole of¬†the right side of his body went limp, he could still feel me tickling his hand but he couldn’t move it at all. His right arm, leg, foot and facial muscles wouldn’t work, he had absolutely no control over them.¬†He was¬†completely¬†conscious and aware throughout the whole episode, which lasted from 10:16am until 11:30am. His speech became just a “ah” noise and we all had a trip to the Children‚Äôs Hospital.

On the way to the hospital¬†Jah lost control of his bladder, this is quite usual during any seizure type,¬†my husband thought I had¬†spare clothes¬†for Jah and I thought he had them. So Jah managed to get his favourite person ‘Granddaddy’ to visit him in Hospital and bring him brand new clothes, even though Jah was discharged almost as soon as he got there. Well to be fair they allowed him to sleep the strange fit off.

From my understanding about Todd’s Paralysis.

Todd’s Paralysis is usually the weakness that follows a seizure.

(There are a lot more details about it here¬†¬†Wiki Todd’s Paralysis¬†.)

However the three that Jah has experienced have not followed any apparent seizure. Maybe he has experienced a fit, we are just unable to witness, after all nobody can see the electrical impulses in any ones brain.

I think that maybe¬†the Todd‚Äôs Paralysis is the actual fit for Jah. I am thinking¬†along this line because, his dad¬†experiences similar sensations, he has never received a diagnoses, but if¬†my husband is hungry, exhausted or stressed and anxious he¬†loses the control of his right leg, if he doesn’t sit down at this point to rest it off,¬†to recuperate, it continues to progress. I have seen him push¬†through the first stage trying hard to shake it off,¬†almost pretending it’s not happening to him but then he¬†loses the control of his other leg, his bladder and his right¬†arm, the limbs all spasm up leaving him unable to move, leaving him with no choice but to rest it off. It doesn’t affect his face like Jah but it‚Äôs scary enough! For him it‚Äôs annoying too.

Jah was soon back in the comfort of his own home.

Colouring in his racing car picture and relaxing on his beanbags, recovering from the exhaustion the fit had caused him.

 

The frequent and common triggers for these episodes are:

  • Medication wean off
  • Hunger
  • TV / computer screen watching in the morning
  • Tiredness
  • Low blood Ketone levels

Each of these have been evident in all three episodes.

Thanks for reading and¬†may God Bless you, ūüôā

Diagnoses and Pizza.

Diagnoses and Treatment.

We have finally got a proper diagnoses for Jah, GLUT1 Defect. Jah has a faulty gene that doesn’t allow the glucose in his blood to be converted into energy for his brain. This means that he will have to stay on the Ketogenic Diet for life because it is the only treatment for this defect. If he gets too much¬†glucose in his blood stream then he risks seizures again. Carbohydrates and sugars are what produce the glucose so that’s what he has to minimise the intake of. The Ketone levels¬†in his blood,¬†that his body produces because of¬†the ketogenic diet, are his medication so we are able to wean him off his last Anti Epileptic Drug (AED)¬†now. We managed to complete the wean off of two others previously so hopefully this last one won’t course any problems.

I’m quite upset about¬†him having to stay on the Diet¬†really, but for my lovely Jah I am staying positive and encouraging him lots. He will not be able to get the Birthday Cake he wanted, ever and he will never be able to eat pieces of fruit like the rest of the family do and I know he would love to. I have to keep reminding myself that this diet works, it’s a miracle diet that I feel God sent to help him and others like Jah.

Beef Burger.

I made him a beef burger yesterday, just a simple one with a handful of mince beef, some dried parsley, a finely chopped spring onion and an egg to bind it together. I moulded it in my hands and fried it. He loved having a burger in-between his special linseed and almond flour bread slices.

Pizza.

I had a pizza¬†to share with my hubby and EJ, so¬†thought it would be nice to make a pizza¬†for Jah too. I’m so glad I made the extra little bit of effort because Jah loved it, which actually surprised me¬†because he usually hates cheese.

Quick Pizza Recipe:

(3g Carb)

1 slice of special bread (made with almond flour)

5ml Tomato Ketchup

1 Spring Onion

2 mushrooms

Grated 0g Carb Cheese

Ham

I would have put some mixed herbs on too but I had none in my cupboard.

I used the slice of special bread as the pizza base, spread the ketchup on to it as the sauce topping. Then layered the mushrooms that I had sliced, the grated cheese and the diced ham on top.  I baked it alongside the large one I had bought in for the rest of the family so it took about 15 minutes on 200c.

I served it with fried mushrooms and cucumber.

For pudding I made him Egg Custard but didn’t mix it when¬†it was cooked, instead I turned it out so it looked like a little pancake with waves on.

He called his pudding a ‘mini egg custard ocean’

I have previously mentioned the recipe in an old post but here it is again.

LOW CARB EGG CUSTARD

1 Egg

30ml Double Cream

¬Ĺ teaspoon Vanilla flavouring

2 heaped teaspoons Hermaseta sweetener

Whisk all the ingredients well in a microwave jug.

Microwave it on full power for 1 minute turn it over/or stir then Microwave it for another 20 Seconds.

Leave to cool and serve.

Thanks for reading. 

May God Bless you :)

Mid-wean off the Keppra, routine.

We had to call 999.

Jah had a strange seizure, we had a mad dash in an ambulance to the hospital. This was 1/3 of the way into the wean. The¬†doctors witnessed and ¬†labelled Todd’s Paralysis but no one (including¬†me and my husband)¬†managed to witness¬†a fit at all. The Todd’s Paralysis lasted 3 hours and really frightened Jah. The whole of his right side became limp he was unable to move his arm or leg and his speech was very slurred too.¬†It slowly wore off and the hospital sent us home without treating him further nor giving any further advice. They¬†just said that we could continue the wean it was probably related but it was up to us¬†if we wanted to stick to the current dose or continue the slow decrease.

My decision.

After much thought I decided to continue his¬†slow¬†wean off the Keppra¬†Medication.¬†He is now on 2ml¬†AM and 1ml PM. This is half of what he was on at¬†his last consultation. I decided to continue because during the first gradual wean off Clobazam, which he had to take for a whole year, he seemed to have withdrawal fits. I know it sounds quite odd, but with each step down he’d fit then once his body¬†had adjusted to the new dose¬†the seizures would stop. The¬†same would happen again and again with every step down.¬†It was almost like he had¬†cluster fits from the withdrawal, but once the¬†Cobazam¬†medication was out of his system the fits settled down and didn’t get worse.¬†The type of¬†fits he would have¬† during the Clobazam¬†reduction were mainly drop attacks and myoclonic jerks.¬†These have not returned¬†since the Clobazam¬†has gone from his system and he has continued on his Ketogenic Diet.

Behaviours.

Since Jah has been on a reduced dose of Keppra¬†and following the Todd’s Paralysis episode, he has improved with regard to his temper and mood swings. I can actually say he is delightfully predictable, which for us is really quite a change! Jah is really enjoying his routines and understands a lot more clearly what is supposed to¬†follow what. For example he is totally aware of the bedtime and morning routines without prompts he knows what is next especially with¬†the morning routine, however weekends are treated the same as weekdays in our house because routine is quite an important thing in our family. It seems that learning through repetition has worked now the Keppra is going.

Our meal plan for Jah. 

It is so vitally important for Jah to get the right amount of Carb at the right times during the day. Especially now, his medication he takes is less than half of what he was on when he first started the diet in Aug 2011. It seems so long ago now I have written it but my memories of those days are so fresh in thought.

The daily feeding plan for Jah is given priority over all. Wherever we go we take food with us for him and there is no place we will deny him his food at the times and quantities he requires them.

Here is what he ate today, every day is very similar.

06:45 Cup of tea made with 15ml double cream and hermaseta sweetener.   Р1/2g carb

07:00 Two boiled eggs with a knob of butter.    Р0g carb

09:30 10g crisps.   Р5g carb

12:00 Beef meatballs (made by hand with just mince beef), Bovril gravy, 20g Carrots, Green beans and 20g Apple.   -3g carb

14:30 Sugar free Jelly and cucumber    Р0g carb

16:00 Half can Tuna with 1 dessertspoon Mayonnaise 1 table spoon olive oil and 1 teaspoon vinegar    -1/2gcarb

18:00 Roast Chicken breast, 30g boiled potato, broccoli, cauliflower, olive oil dressing.   Р5g carb

19:00 Special Cocoa   Р1g carb

Jah drinks 2litres of water and sugar free carb free squash everyday, this is to help prevent renal stones, from the high protein and fat intake.

 

Thanks for reading,

Being Difficult

Being Difficult…. is my title for todays post because…….

  • ¬†Jah is being difficult to handle lately.

Since Jah received the disappointing news of him¬†having to stay¬†on his diet another year¬†and¬†the Keppra wean started. Jah has developed new little ways, strange to how he used to be.¬†He has become quite demanding and opinionated. I’m sure this is the way any other 6-year-old¬†boy¬†with Autistic traits¬†would be, but because Jah has only recently and quite quickly caught up with this part of childhood, my husband and I are finding it a bit of a struggle to adapt and accommodate our Jahs¬†new ways. It’s still ‘finding our feet time’ and because we can’t predict the reactions of Jah, we are having to play it by¬†ear and take¬†one day at a time.

He is lashing out a lot more at us and has kicked me and his dad a lot more over this last week. I have invented reflection time, this is to replace time out because Jah totally freaked out about time out throwing things at us and screaming so our ears hurt if he was told to sit on the bottom step for 5 minutes to think about his actions.

Reflexion time is in his room (which he shares with his brother now we have moved house three months ago) he sits in his room alone and looks in a mirror that is on the wall opposite to where he sits. This doe’s actually work, for now it is anyway. I am planning to make a sensory room for him in the large under the stairs space. I just have to save first for a shed to get all of our bikes out of that area, then I can put my plan into action. I have all sorts of things we can have in this space that I have prepared ready, I think Jah will enjoy helping¬†us to re-create this special space, it can be our next project.

  • ¬†It’s been difficult finding alternate foods because Jah has gone off eggs, this includes omelette, egg custard and all the other eggy things he used to like.

However he is loving fish, so he is eating like a cat and having tuna, sardines, salmon and haddock. It’s costing me¬†a fortune on our tight budget but I cant find anything¬†else he will eat without me really¬†encouraging him, and by this I mean

“Please eat your egg custard Jah!”

“No!”

“You will be hungry if you don’t eat won’t you bab?”

“Yeah but then you will have to make me something else.”

“What would you like?”

“Nothing, you can get me a new toy then, I’ll eat it!”

“I will give you a¬†sticker for your star chart so you can earn towards your new toy, if you eat it.”

“Five stickers?”

“OK then. five stickers now eat your egg custard.”

“I don’t like it I’ll have tuna instead and I can do it myself.”

These conversations drive me bonkers!

He is probably just rebelling because he doesn’t want to be on the diet for any longer, but it’s so very important he is on it now because of the wean off his medications, that is currently taking place. I can see he is fighting for independence and control, but I¬†don’t know how to help him feel these things. I have tried my best to explain why and how the diet is helping him but he doesn’t remember ever having a seizure or how it made him feel so he must feel like we are betraying him or fooling him in some way.

One good thing though that I can report is he isn’t stealing food from his brother anymore. The carb free box is¬†working.