The Past, Present and Future

Life has been quite full on for us lately. Our son who is on the BioMed journey had dental surgery  in early September which he came out of extremely upset.  The cannula was still in his hand when he woke and he hated that.  He was saying “Help me Help me”, wanted to hide under the blanket, was cold – it was very distressing for everyone.  I’m so glad my husband had taken the day off work to come with us.  He calmed once we got in the car and started moving.

The following weekend I had a miscarriage at 11 weeks during which I lost a lot of blood and ended up in shock so I was in hospital for a night. The weekend after that my husband had a job interview interstate , which unfortunately he didn’t get.  On top of that he’s been working on a new project which has taken up basically all his free time which inturn, means no free time for me as I am full time child carer.  Anyway, our son recovered from his surgery well and I am still building back up but we are getting there.

We have been continuing on with the S-adenosyl b12 shots for a few months now. Our son now marks the spot with a whiteboard marker for the Emla cream to go on and then once it has done its magic (and sometimes even before) we do the shot.  He insists on standing for them now for some reason. Although he is familiar with needles now, we still can’t get a blood test done.  He was terrified last week when we tried to get a test done so we gave up to maybe try another day.

I’m not sure if its making a huge difference as yet.  I must go back and compare some videos and my notes from before we started them. I know that he definitely doesn’t seem to go down/backwards in the days before he is due for it.

It had become apparent lately that when he couldn’t answer a question, he would go to a default of saying what he was thinking about or a line he knew by rote from a game or movie. It was as if he had too much information to process or couldn’t gather his thoughts and put it all together to process it and develop an appropriate response. I asked him the other week where the words were getting mixed up and he said “In my head”. I had a feeling this was the case as opposed to them getting jumbled on the way to his mouth. Many times our son would hit his head out of frustration in not being able to get his point across or make his thoughts understood. In discussion with our Biomed Dr we have decided to introduce Bethanecol.

It is believed (my take on it anyway) that information comes into the brain from the differing inputs and senses and then travels across the brain a few times to process and come together.  When these streams of information are travelling at different speeds, they cannot come together and therefore it all becomes a big jumble of information.  Bethanecol enables these streams of information to travel at the same speed.

The results from using this drug can be astounding. Non verbal children have been speaking in sentences within an hour of the first dose.  This is one of the reasons (besides a possible adverse reaction of which to my knowledge there has been none) that the Doctors like to do the first dose in their rooms – its so rewarding to see such an immediate change in a child. I should have it by the end of the week and we are booked in for his first dose next Wednesday.   I can’t wait.

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Moving Goal Posts

Well not moving goal posts as the goal is always the same – to make our son healthy.  Its more that the rules of the game have changed.

I had been thinking that I’d finally gotten my head around the GFDFCFSF diet and we had started reducing fructose after reading the book Sweet Poison.  My husband is now fructose free and I’m almost fructose free – its harder when already dairy free which my husband is not. He has lost about 8kg in a month with this small change.

So when our Biomed doctor said that she thought our son had candida in his gut, going fructose free wasn’t that daunting.  Then I realised that an anti candida diet is much more than just fructose free.  This is when I thought my head was going to explode.

All the basics I had come to rely on were to be removed -rice, rice flour, rice milk, rice puffs, potato, potato starch, dextrose, raw cane sugar, honey, let alone his apples and bananas.   Add to that that he isn’t allowed to take nuts to Kinder due to a child with anaphylaxis in his class, so that rules out another food category for baking treats.  Not that we have many treats at all but I like to have something that he can have when birthday treats are taken to Kinder. Fortunately he does like savoury over sweet most times anyway. After some more research, I believe brown rice is ok as it actually helps detoxify and remove the dying candida from the system.

Today I am much more at peace with it. He loves chicknuts (roasted chickpeas), so I am going to work from there and next year his school allows nuts so YAY! Even if rice and its derivatives isn’t OK, we can go over to nutmilks, coconut flour and nut flours.  I’m unsure about quinoa and other seeds as yet.

Breakfast stumped me for a while until I remembered he loves bacon.  I got him to eat some omlette today too, so I think cooked breakfasts are going to be the go.  The only thing I’m sad about is that getting his own breakfast of cereal has been his big independence leap. I can see lunches being sausages and salads and then back to the classic meat and vege dinners of our parents generation.

We will get there.

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Filed under Baking, Bio Med

See I said I wasn’t good at this… and a recipe

I get so busy ‘doing’ that I dont’ blog about it. I actually started this post in June!

My kitchen has been a mess this week. I needed a special treat to send to Kinder with my son for days when other kids bought in birthday cake to share. I attempted to make macarons as they are popping up everywhere and an original gluten free, dairy free, soy free, corn free recipe.  Well the almond ones were a complete failure and ended up in the bin.  I did realise though that I don’t actually like the strong almond flavour of a traditional macaron so at least I learnt something.

I’d reserved half of the meringue to make coconut ones as my sons kinder is also nut free.  They taste a lot better than the almond ones in my opinion as I’ve never been a fan of strong almond flavours such as marzipan.  I even refused to have marzipan on our wedding cake.

But I still wasn’t happy with these to send them to kinder.  They were huge and very sweet. So instead I went back to an old favourite that I have been making for years.  I used to make this as a teenager when I took over making the cakes and biscuits in our house.  I didn’t have to tweak it at all.  I just needed to make sure that the rice bubbles I used were gluten free and use Nuttelex instead of butter or regular margarine like I would have in the past.

Date and Bubble Slice

250gm dates – chopped

1/2 cup sugar

125gm margarine or butter

4 cups rice bubbles

Combine dates sugar and butter in a small pan and cook until the dates are mushy.  Be careful not to overcook this mix as if you do your bars will go very hard.

Place your rice bubbles into a large bowl and stir in date mix until it is combined.

Spray your slice pan with a little oil and sprinkle with coconut.

Press your mix in firmly and sprinkle the top with more coconut.

Allow to become almost set in the fridge then slice into fingers or if its fully set, use a bread knife to cut your fingers.

Enjoy.

Maybe one day I’ll update with photos.

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Filed under Baking, Corn Free (CF), Dairy Free (DF), Gluten Free (GF), Soy Free (SF)

ABC interview with Dr Nancy OHara

Dr Nancy OHara has recently been in Australia as the keynote speaker at the MINDD conference.

Here is her interview on ABC Radio’s ‘Life Matters’ regarding the relationship of nutrition and environmental factors on the rise of allergies, asthma and developmental disorder in our modern world.

Dr Nancy OHara on ABC Life Matters on Nutrition and Developmental and other Disorders

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B12 shots – Not so scary after all! Ok, maybe a little bit

We have started the next stage in our protocols – B12 injections.  Most use methyl B12, but the organic acid urine test (OAT) returned markers which pointed to s-adenysol B12 being the better option for our son.

B12 is not a cure all.  Dr James Neubrander pioneered this therapy and describes its effects below:

 It is important to understand that the effects of Methyl-B12 are due to what Methyl-B12 allows to happen in the brain and not because it “makes speech”, “makes awareness”, or “makes socialization”. If I put earmuffs and a blindfold on you and drop you by parachute deep into the heart of Africa, once you land and are found by the natives, you will not understand the language. If you continue to wear the earmuffs and blindfold, because you cannot lip-read or hear the language being spoken, you will remain in the dark. However, once your remove the earmuffs and blindfold, though you still do not know the language, you will now have the same advantage every other baby born into their society has. You will have the opportunity to begin to lip-read. You will have the opportunity to hear the language spoken. You will have theopportunity to first understand receptive language. And eventually your tribesmen will have the opportunity to hear you express yourself to them! Removing the earmuffs and blindfold did not increase your intelligence nor did it add any new brain cells. What it did was now allow your brain to begin to absorb information, store information, utilize information, process information, and respond appropriately to the situations at hand.

So it is with children taking Methyl-B12; they seem to blossom over time. Everything kicks in and starts working; therapists are amazed!….. What has happened is Methyl-B12 has taken off the earmuffs and blindfold that have been blocking the children’s brains from utilizing the neurons and brain cells that were already in place but that were just waiting for the right circumstances to occur. The addition of Methyl-B12 allows the conditions to be right! However, Methyl-B12 is not what does it, is not what makes the child learn, is not what brings the child back. Instead, it is ABA, OT, PT, speech therapy, and all the other forms of therapy that finalizes the deal and gives the child back to his parents and to the world. However, without Methyl-B12 leveling the playing field, children on the spectrum would never be able to realize the advantage that unaffected children enjoy in a learning environment! And so it is – Methyl-B12 the gloves , therapies the hands!

Reference

I was really confident in administering these shots.  Although I’d never given shots before, I was always the one to take our kids for vaccines (when they were getting them), blood tests and even circumcision.

They are injected every 3 days, subcutaneously in the bottom.  On Thursday night , the 14th July 2011, we waited until our son was asleep then applied Emla (anaesthetic) cream.  After 30-45 minutes, we went in to do the injection.  I suppose the first sign it wasn’t going to work was that I couldn’t identify exactly where I’d put the cream.  The piece of plastic bag I’d put put over the site had come off and probably half the cream too. I got the needle in but our son cried out so he obviously felt it.  I pulled the needle out before injecting even though it was only a tiny amount of solution.  Then as my husband picked him up to move him to his bed (he loves to go to sleep in Mummy and Daddy’s bed) , I thought I’d try again.  As soon as the needle touched his skin he cried out again, then when my husband pulled his sheet up on him, he flinched and cried out “No, No!”  As one of the parents says on Dr Neubranders site says ” No child should have monsters in the night”, so we decided we had to do it when he was awake.

The next day (Friday the 15th July 2011) we told our son that there was a new medicine that we had to put on in this cream and piece of plastic.  We applied the cream and a dot of marker pen to remind us where the cream was. One hour and lots of reminders for him not to rub it later, we told him we that we just had to take the plastic off.  Again he bent over my husbands knee, the same as he did to apply the cream.  I had the syringe uncapped and at room temperature so as I removed the plastic covering the cream, I quickly injected the s-adenysol B12.  The actual volume of the shot is 0.044mL so its only a tiny amount so it can be injected quickly.  It was done and he didn’t feel it. YAY!  We also didn’t feel like we were being dishonest to him either by doing things to him in his sleep.

We didn’t get pink wees the next day, so I must have injected at a shallow enough angle too.

We have done 5 injections now.  The emla cream still stings him and I’m considering doing it without the cream as he complains of the stinging for about 5 minutes. If I just did the injection then it may still sting but it would be all over and done with.

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5 Orange Tic Tacs

That is all it has taken to teach our son to swallow capsules.

Previously I’d been opening up his capsules and mixing them with juice or fruit puree.  Lately our son had started gagging at the sight of these mixes and to be honest, they did taste terrible.  I’m very proud that he has taken his supplements in this way for so long.

A couple of times I’d tried to teach him to swallow capsules by using the empty shells of the capsules we had.  This never worked though as they collapsed in his mouth and he ended up chewing them.  Also now that I put some more thought into it, an empty capsule wouldn’t have been easy to wash down with water as it would float.

This morning I did a little googling and came across the Tic Tac method.  Basically you find something small that if they do chew it or it melts in their mouth that it won’t taste terrible – or waste or improperly dose supplements.  Although containing maltodextrin which can be wheat or corn derived, it is processed down so far that no proteins are left to cause a reaction.  I decided to use Tic Tacs in spite of the risk of corn or wheat for the longer term goal of ensuring that he will continue to take his supplements.

I’d spoken to our son about how if he could swallow capsules then he wouldn’t taste the supplements. So tonight we had a glass of water and a straw (apparently they concentrate on the straw and not the capsule) and our tic tacs.  He had a suck of water, I popped the tic tac in his mouth and after a bit of movement around the mouth, it went down! And then the next 4 – one even without a drink! Next he said he wanted to take his capsules and he took the smaller 2 straight down. I’m so proud of our boy.  He is only 5 1/2 and he has mastered the art of capsule swallowing which is hard for many adults.

Now we will wait a while and really get this down pat then work up to the larger capsules. I’m sure this little step will make this whole journey much easier.

ETA – Ok, today wasnt’ as successful but we will keep trying

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Yay for the little things

After 4 months on the Biomed journey, one of the recent changes has been changes in tastes.

At first our son refused to replace dairy with rice milk, but when on holidays he had some rice milk made into a hot chocolate.  I started to make my own drinking chocolate mix which is equal parts pure cocoa powder and icing sugar. Then one day about 2 weeks ago he asked for a bowl of rice bubbles (I get pure rice puff from a wholefoods store) with rice milk.  Since then they are the default answer for “I’m hungry”.  He is also drinking rice milk by the glassful.  By using the rice milk with 300mg of calcium per 250mL, this means that if I track how much rice milk he has during the day, I don’t need to supplement as much calcium for him in his evening meds.

Spring onion dip used to be a favourite around these parts until going dairy free.  Our son loves dips so I tried to introduce hommus but he wasnt’ a fan.  Salsa was ok but not a huge hit.  Yesterday for some reason I bought a tub of hommus dip – and he ate almost the whole 200gm tub!  Today I thought I’d push my luck with eggplant dip and he is currently ploughing through that. I think I need to buy more rice crackers (we find Sakata plain ones good but some kids do react to them)

When I was looking for the eggplant dip today, I found a range of suitable dips by Yumi Seafoods. I can see us working our way through their range. Even their creamy ones are gluten and dairy free mayonnaise based. I must check what type of oil they are using in their mayo first to make sure its not soy or corn oil. I am presuming that its canola  as that is what is used in their mayonnaise but that is one thing I’ve learnt – presume nothing.

Another improvement that has come along without us specifically addressing them is nail biting.  our son was getting bad at nail biting, often biting his nails until they bled.  I tried the yucky nail polish but that didn’t work.  About 3 weeks after starting biomed I noticed his nails had grown long and I actually needed to  cut them! I hadn’t cut his nails for about 2 years but now I need to cut them every week or so.

Hair washing used to be a real trauma.  The thought of getting bubbles in his eyes prevented me from shampooing his hair for a couple of years.  We relied on plain water washing his hair in the shower.  I must admit that plain water did do an alright job but sometimes it did need something a bit more to remove the build up of  skin and oil on his scalp.  It wasn’t long after starting biomed that I was suddenly able to wash his hair.  We get him to hold a flannel over his eyes just in case but at least now its easy.

One thing that I’m sure will have improved is his reaction to swimming. He loves the idea of it but I think its a combination of putting his head in the water and the sensation of semi weightlessness that holds him back.  I can’t wait for warmer weather to get back to the pool.

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Filed under Bio Med, Corn Free (CF), Dairy Free (DF), Gluten Free (GF), Progress Reports

Word-isms…So I don’t forget

Although I write about our eldest son a lot on here, he has a little brother (who is small and very silly) and about to turn 4 next month.  Maybe its because he has accompanied us to most speech therapy sessions, that he has outstanding language skills for his age but his pronunciation of some words gives us a giggle.  This is all new to us as our eldest has always been a boy of few words.

I want to record his little word-isms otherwise I know I will forget them.

bompy = bumpy
demember = remember
destructions = instructions
pin-yano = piano
Cee-um-bee-bies = CBeebies (BBC TV for Kids channel)
Loo – lis = Lewis
de-chine = machine
alligator = elevator
cane-0 = volcano
mergency = emergency
dalarm = alarm

I’m sure there are so many more.

Kids grow up and change so quickly. I need to remind myself to stop and just be with them rather than be doing the things that I might feel ‘need’ to be done.  The constant requests for a hug from the little brother (who compared to his older brother is very demanding) may interrupt me but it can never go unanswered because this time is fleeting.  You never know when the hug request that you turn down might be the last one.

Both boys have been sick over the last week.  Is it bad to think that in some way that it is nice as  even though they are growing up, they still need you and a cuddle on your lap makes them feel so much better?

I don’t know how people do it, but I hope my boys grow into those teenagers and young adults who are still happy to spend time with their parents – even in public! Shock and horror.

I wonder though, is that how re raise our children or growth we need to make as parents to grow with our children which makes us the type of person our children want to be with? I’m not saying be our children’s best friend – we still need to be the parent – but we need to be able to relate to them.  Food for thought anyway.

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Some detective work required

We had a wonderful (but exhausting) holiday and are now trying to relax a little before the routine of school starts again next week.

Whilst on holidays we started a new supplement of Carnitine and CoQ10.  We have to build up to 4 capsules a day – 2 each morning and afternoon. The first day we introduced it, I tried mixing it into a chocolate crackle but it tasted terrible.  The compound tastes very tart like Vitamin C. The next day I mixed with his other supplements, which get mixed with a little apple juice, which gets taken after dinner, just before bed.  For some reason, he really didn’t want to take it but I convinced him to.  As soon as he swallowed the last mouthful, up it all came again, a long with everything he had eaten for the day.  We thought he mustn’t have been feeling well as he didn’t want to take any supplements. After a shower, new pj’s and new bedding, he slept the night through with no more worries.  The next morning when he woke, his eyes looked like this:

The force of vomiting must have burst tiny capillaries around his eyes. They took about 2 days to clear.

Seeing as we needed to build up to morning and night, I gave the next few doses in the morning mixed with a little orange juice.  We found putting it onto a spoon and spooning it straight into the back of his mouth the best way.  He had no more reactions to it so I introduced it at night time aswell.  I mixed it separately but gave it to him at the same time as his other supplements, after dinner.  A few hours later, he vomited in his sleep.  We put it down to increasing the dosage so we dropped the dosage back down to 1 per day on and empty stomach.

We didn’t put together what was really happening for a few more days.  One night we were going our for dinner, I decided to give him all his supplements before we went out so I didn’t have to worry about giving them once we got home. At the same time that I was giving the carnitine/CoQ10, I gave the other supplements.  An hour or so later, he vomited again whilst playing.  It was then that it clicked.  He was only ever sick with it when he had it in combination with other supplements.  I don’t know which ones are interacting but something obviously is.

We are still to build up the dosage but at least we know now that it needs to be given separately to all other supplements.

There may be a bit of a flurry of posts this week.  Whilst on holidays I had time to think about what I want to write and I know I’ve missed  pre and post appointment blogs for last month.  We have our next appointment next week too!

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Filed under Bio Med

Noooooooo!

Cupcake by Jillian Nicole via Flickr

They look innocent don’t they?

Yesterday our son was accidentally given one of the birthday treats brought in to his Kinder.  He has substitute treats in the pantry at Kinder for him to have on days like today, but he was accidentally served up a cupcake.

I suppose it had to happen one day but it is still disappointing.  We put in all this hard work only to have the rug pulled from underneath us by someone else’s mistake.  Our son is usually very good and will ask if something is safe for him, but today he didn’t and ate it all by the time they realised their mistake.

He hasn’t reacted too badly fortunately. He is puffy around his eyes, sing song-y in his self entertainment when bored at the doctors and less responsive when we speak to him.  He was still able to take me through the whole “Goldilocks and the Three Bears” story that he laid out around our house. It was lovely to see things that he is doing at Kinder sinking in and him being able to process it and retell it in his own way complete with 3 different sized bowls on the table and 3 different sized chairs.

We had a doctors appointment today which as always was very enlightening.  Hopefully I’ll be back with a pre appointment and post appointment updates before we go on holidays on Friday.

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Filed under Bio Med, Gluten Free (GF)