Nutrition – Raising Awareness

I started this blog when Liam’s tics started getting really bad, we had also just received his epilepsy diagnosis, I was in quite a state as we had been battling over the years with concentration, transition and fine motor troubles.  When his tic appeared, I was at the end of my tether.

I had been dragging Liam from one appointment to the next, therapy session after therapy session and then the tic formed and I just didn’t know what to do anymore.  I must say, I hit rock bottom when we received his epilepsy diagnosis after his EEG.

Mom guilt set in quite deeply, especially since he should never have been put on Ritalin.  I should have demanded an EEG before that Ritalin prescription was handed over, but ever trusting, I accepted the word of his Neurologist who said that an EEG wasn’t necessary.  I was so angry and upset and felt like I had been failing Liam over the years.  Just before we stopped giving him Ritalin, he developed both motor and vocal tics, one which included throwing his head back, so reading was becoming more and more challenging as he would keep losing his place.

We had been witnessing his tics for over 4 months when I decided to look at how nutrition can play a part in ones mental and physical well-being.  In the fifth month, after attending a nutritional talk on brain fog, I started giving Liam AIM BarleyLife and AIM FloraFood supplements and we started to notice his tics change.  Before the supplements, he was thrusting his shoulders up, throwing his head back and making a uh-huh sound – you can view the video here.  After starting the supplements his tics changed to just a sound like he was clearing his lungs of air – you can view the video here.

Once we introduced Metagenics Omegagenics and did the food intolerance test, eliminating gluten, dairy and eggs from his diet, we haven’t seen any tics at all.  We haven’t received any complaints from his school about his concentration.  At the last feedback session we had with his teacher, the only thing that was an issue, but not a serious one, was his handwriting.  We have also seen a massive change in his behaviour overall, he is no longer randomly screeching when he gets excited about something, he barely interrupts us when we are talking anymore, he’s concentrating for longer periods at a time when he’s doing something he doesn’t particularly enjoy, and he’s remembering his manners more often now too.

I decided to start this blog, not only to try to help others who may be going through what we have been going through, but also in the hopes of finding others who have been through this and have managed to help their children without medication.

I would always brush off any nutritional information in the past, I think mainly because of news headlines, one-day fat is bad for you, the next day fat is good for you, one day eggs are bad for you, the next day they’re good for you, and so it goes on.  You actually just don’t know what to do, so you just do what’s easiest.  I had heard about how bad aspartame is for you, but why would corporations put it into diet drinks, so I shrugged it off.  At the end of the day, if you like the taste of something, you will probably dismiss any information saying that that food is bad for you.  How could it possibly affect you anyway, right?  But it does, and that’s the scary part, we just don’t realise what we are putting into our bodies and HOW it really affects our mental and physical well-being.

On top of all the food advice and research going around, you also don’t want to be ‘that person’ who doesn’t eat this and doesn’t eat that, the picky eater, the one who brings their own snacks to a party, the one who says ‘oh no, I can’t eat that, it has gluten in it’, the one that people complain about and dread inviting over.

Soon after getting Liam and Ray’s results back we received a dinner invite at a friends house.  I accepted and mentioned that we are now gluten, dairy and egg free, but we can eat meat, fish, rice, veg and maize.  My friend replied thanking me for the heads-up. Then a couple of days before the dinner I received a message from her saying that she didn’t know what to do for pudding because of the ‘gluten, lactose, fructose and glucose people’.  I felt so guilty and embarrassed – eeeeeek I’m one of THOSE friends now.  I replied and told her I would bring chocolates along.

Even though I may have felt embarrassed, I still feel it is incredibly important to stick to my guns.  We have seen a remarkable difference in Liam, especially with his tics, so I will push through any embarrassment, or comments and eye rolls.  I want to talk to everyone about the differences we have seen in Liam, I want them to also try help their children nutritionally.

I realise that some children are picky eaters, so healthy eating isn’t always an option and medication is an easier alternative.  I’m not anti-meds, I’m just incredibly weary of the side-effects they can cause.  I will be taking Liam for another EEG before the year is over, and if the results still show that he has epilepsy, then I will consider putting him back onto his meds, especially when the warmer months approach and he will be swimming again, but I am hoping that that won’t be necessary.  I truly believe that we are on the right path.

I have spoken at length about AIM BarleyLife, AIM FloraFood and Metagenics Omegagenics.  If you would like to read up on what these supplements are, and their benefits, click on the links below:-

The links above do take you to American based websites, however, you can get all of the above products in South Africa, through a Nutritionist or Wellness Coach.

Gluten, Dairy & Egg Free

When I received the food intolerance results saying that Liam and Ray are gluten, casein and egg intolerant, my first reaction was relief.  I was just so happy to know what was potentially causing Liam’s concentration, tic and possibly his CAE problems, as well as Ray’s weight loss problems.

Soon panic set in when I realised that gluten, dairy and eggs were in pretty much everything we ate.

I received their results on a Friday and had an appointment to see the Nutritionist the following Tuesday.  In between, I managed to spend a small fortune on gluten, dairy, egg free products.  I bought two 250g boxes of gluten & egg free penné for R120.00, spent about R50.00 on potato starch, R100.00 on gluten & egg free spaghetti, R35.00 on a tiny bag of almond milk powder, R180.00 on a kg of almonds, R20.00 on cheesecloth (I watched a few youtube videos on how to make almond milk…).

The two boxes of penné are still in our cupboard, the potato starch hasn’t been touched since March (I used it once), we have used the spaghetti, the almond milk powder had casein in it… didn’t think to check that, most of the almonds are still in the cupboard because I soon discovered that you can’t make almond milk in a food processor (I have now ordered a blender which I should receive this week).

I realised after seeing the Nutritionist that you can keep it extremely simple, there was no need to complicate things.  So I adopted the KISS strategy – Keep It Simple Stupid.

Kids like to snack, so my first point was, what do I give Liam to snack on.  Luckily there are a few products available that we used to eat before and that we can continue eating which are free from gluten, dairy and eggs:

  • Crisps: Lays Salted is the least unhealthy option, you can also buy Lays Sour Cream & Onion, Lays Balsamic Vinegar, Simba Smoked Beef, Willards Flings (as well as many others, but these are the ones we regularly buy).  Popcorn is also a winner.
  • Sweets: Jelly Tots, Wine Gums (most jelly type sweets, you just need to read the label), Manhattan marshmallows.
  • Chocolate: Beacon Midnight Velvet, Lindt Excellence 70% & 85% Cocoa Dark (we basically only buy the Beacon Midnight Velvet, as it’s cheaper than Lindt.  Some of the Nestlé Albany chocolates are also dairy and gluten free.

Realising that there are still loads of ‘snacks and treats’ that can still be consumed made me feel much better.  I always keep some sweets hidden in the house for the times when there is a party at school and Liam can’t eat what’s in the party pack, so we swap it out for something he can eat.  Lindt also do a dark chocolate bunny which helped so much during Easter, he was given an Easter egg at school, which he couldn’t eat, so he gave it away, when we got home I gave him the dark chocolate bunny and he was so happy.

I did find that, during Easter, there wasn’t much choice in Easter eggs, apart from the Lindt dark chocolate bunny.  Beacon did bring out a dark chocolate marshmallow egg, but it had dairy or gluten in it (I can’t remember which), so that wasn’t an option.  Luckily my colleague was visiting from Austria the week before the Easter weekend, so he brought over a nice selection of dairy and gluten free Easter eggs.  He saved the day!  I’m going to have to get creative next Easter though and may end up buying stacks of Midnight Velvet to melt and mold into bunnies and eggs, and then foil them up in some bright colours.

As for lunches, Liam has always been easy.  Before the food intolerance test he would always ask for cucumber, cheese and tomato… hence the blog name, but now it’s just cucumber and tomato ha ha.  I usually put a plate of fruits and veg together for him, whatever is in season.  At the moment, as it’s winter, he gets a naartjie, cucumber, cherry tomatoes, carrots, sometimes broccoli, and then a slice of ham or some shaved chicken breast.  In the summer months he gets grapes and watermelon instead of naartjie.  Most days he asks for another plate of fruits and veg after his first plate.  Then he has a bowl or two of Flings, or Lays as a snack in between lunch and dinner.  He’s also happy to have a plate of fruits and veg for breakfast.

Then for Ray, I have been pre-cooking and freezing lunches for him to take to work.  The easiest one has been a black rice, onions, peas, mushrooms and boerewors mix.  My dad used to make this dish when I was younger, but with white rice, he used to call it ‘Gemors’.  I was buying black rice from our local Pick ‘n Pay, but they have been out of stock now for the past month or so, and I’ve been searching every Pick ‘n Pay I go to.  I am about to use the last bit of what I have left, so I’m not sure what I’ll do once it’s finished.  I’ll probably use brown rice…  I also pre-cook, mash up and freeze veg for him, so when he gets bored of the Gemors dish then he cooks himself a chicken breast in the morning, or some boerewors and takes some frozen veg to work.

Dinner time is easy too.  I try to stick to a rotating meal plan, but sometimes that doesn’t pan out.  Generally we eat chicken breasts and rice with peas, or fish, mash potatoes and peas or mixed veg, or spaghetti with gluten free pasta, or steak and chips with veg.  Liam doesn’t like avocados, but Ray and I love them, so we eat avo’s almost every night now that they are back in season, yay!  I always try to cook more than what’s needed for dinner to carry over for breakfast

Some days a little bug bites me and I throw the KISS strategy out of the window and try and make something I have found on Pinterest.

In April Liam was begging me for pizza, and I found an awesome quinoa base recipe, so I soaked the quinoa the whole day, and that evening I made the base (it was hard work the first time.  I put the quinoa ‘batter’ onto baking paper, just like the recipe said, but then once cooked, the baking paper had soaked into the base, so I had to peel every little bit off it – it was piping hot as it had just come out of the oven too, so my fingers were very sore).  I had bought dairy free cheese from Woolworths and made Liam a pizza I was super proud of, it had bacon, banana and cheese on it, yum!  Liam was over the moon with his pizza and tucked in.  I returned to the kitchen to re-do the recipe for Ray so he could also eat pizza.  While I was busy in the kitchen, Liam brought his plate through, told me how much he LOVED the pizza and put his plate on the counter… he had eaten everything apart from the quinoa base lol!  He said he didn’t really like the taste of it, but the rest was very nice.

Most recently I attempted making chocolate fudge…. The recipe called for only three ingredients, coconut milk, icing sugar and dark chocolate…. seemed quite simple.  I knocked it all together, followed the recipe step-by-step and ended up with chocolate sludge.  It was sickly sweet and quite revolting actually.  I think that the problem is that the ingredients are a little different to those we have in South Africa, so most of them won’t work out perfectly, for instance, the icing sugar we have is made with corn starch, but in America you can get icing sugar made with tapioca starch, which was apparently the key in the recipe I was following.

I’m going to make coconut bomb things next, I know that it will work out as I made them when we were banting, so it’s a safe bet.

It hasn’t always been perfect though, cutting gluten, dairy and eggs out of ones diet is difficult, just not as difficult as I had expected.  Luckily the intolerance’s aren’t allergies, so when mistakes are made, there aren’t terrible consequences.

There was a ‘slip ‘n slide day’ at Liam’s school the one day, and I hadn’t received the newsletter about it, but there was a reminder on D6 about the money that needed to be sent for it, so I put the money into an envelope and sent it to school so that Liam didn’t miss out on the fun.  That afternoon I collected him from school and Liam told me that he made a mistake and had eaten a chicken and mayo roll.  I told him that it was fine and that we all make mistakes.  His cousin had a sleepover that night, by 19:00 Liam was so grumpy and tired, he told me he just wanted to go to bed and he was asleep by 19:15.  Very out of character for him as usually, when his cousins come over, he’s still awake at 21:00.  I found out the next week that there were options on the newsletter, which I had never received, to choose a snack for the kids for slip ‘n slide day.

We have also attended quite a few birthday parties and Liam loves cake, so I always tell him that he can have a small slice of cake.  Most often he falls asleep on the backseat of the car on our way home from all the fun, gluten, dairy and eggs ha ha.

Initially I was buying almond milk, which is quite pricey, so two months ago we switched to soya milk, which was a terrible idea.  I had been having trouble with my hormones and basically felt that I had just got a nice balance when we started drinking soya milk in our tea.  It wasn’t long and my hormones were way off balance once again.  A couple of weeks ago I read in one of the information packs that the Nutritionist gave me that soya can throw your hormones off balance quite badly, so that made sense and I stopped buying soya milk.  I bought Renewed Balance cream from AIM and have been drinking my BarleyLife and Peak Endurance every morning and think that maybe I have started balancing my hormones again.

Ray started losing weight really nicely to begin with, but has plateaued again, he thinks it’s from the sugar (it may have been from the soya milk too…), so we are going to concentrate on eliminating sugar from his diet.

I have taken Liam off his epilepsy meds now that it’s winter and he isn’t swimming anymore.  I worried about the potential liver damage and suicidal thoughts side-effects that the meds can cause and feel much better now that he’s off them.

So far, we have had no serious illnesses this winter, Liam had a little cough about a week and a half ago, I gave him nose spray and put the humidifier on in his room at night and his cough has gone.  Ray hasn’t been sick at all so far, and I had a bit of a sore throat, and what felt like the beginning stages of laryngitis last week, but that’s cleared up now with the help of nose spray.

So far so good!

Nutrition Talk & Food Intolerance Tests

Soon after Liam’s epilepsy diagnosis, I attended a nutrition talk with a friend about ‘Brain Fog’.

The talk was extremely eye opening and touched on many of the problems we had been experiencing with Liam over the years.

After the talk I chatted with the Nutritionist and briefly explained what we had been going through and she suggested we do a food intolerance test and to also start Liam on BarleyLife, FloraFood and Omegagenics supplements (something my sister-in-law had been telling me to do for about a year and a half, but I never listened *hangs head in shame*).  The Nutritionist also suggested we cut Aspartame out of Liam’s diet completely, which we had done already as our Doctor advised it would be best when we received Liam’s epilepsy diagnosis.

The food intolerance test was quite pricey, and medical aid won’t cover the cost of the test as it’s nutrition based *eye roll*, so we couldn’t do the test immediately.  In the meantime I bought Liam AIM BarleyLife and AIM FloraFood and started him on the supplements.  Metagenics’ Omegagenics was also a little bit expensive, so I had to wait for the next month to buy them for Liam.

After about two weeks of Liam drinking BarleyLife and Flora Food, we noticed that his tics eased, they weren’t as disruptive anymore.  I took another video, which you can view here.  His tic was now more of a vocal clearing air from the lungs sound.  Every now and again we’d notice a motor tic, but nothing as frequent as before.

Needless to say, I was sold!  I knew we were on the right track and it felt great!

The next month we did the ImuPro food intolerance test on 90 foods.  We also decided that Ray should get tested, as he has been struggling with his weight for many years, so both him and Liam went into Lancet with the paperwork and Lancet sent the blood and paperwork to the MDS lab in Durban for testing.

What the ImuPro test does is test for the presence of specific IgG antibodies to particular foods.  The test will then outline the levels of IgG antibodies to those specific foods depending on how elevated the levels are and list them as ‘not elevated, ‘elevated’ or ‘highly elevated’.  The ‘highly elevated’ foods will be your type III food hypersensitivities; not to be confused with a type I food allergy, which is detected by testing for IgE-mediated food allergies that can cause serious reactions like anaphylactic shock, vomiting, itching, rashes etc.

Type III food hypersensitivities can cause problems in your body that you are probably aware of, but not aware that the food you are eating is causing the trouble, specifically inflammatory processes.  They are also very difficult to detect as symptoms caused by a type III food hypersensitivity can sometimes only occur after a few hours or even a few days after consuming a particular food.

I’m going to liken my example of the small intestine to a battle you would see in, let’s say, Lord of the Rings:

So a person is intolerant to casein (in dairy) and gluten, and they eat a cheeseburger; the food reaches the small intestine.  The primary function of the small intestine is to break down and absorb nutrients and minerals from the food and release them into the blood stream through the intestinal wall (the wall blocking the invaders getting through to the citadel); but the villi in the small intestine and the intestinal walls are damaged due to many years of eating foods containing casein and gluten (the wall is damaged due to boulders being thrown at it by the enemy).  Proteins and enzymes from the casein and gluten get through the intestinal wall into the bloodstream without being broken down (the enemy breaches the wall in one piece).  The immune system initiates an immune reaction against these food proteins as they are seen as invaders.  In the process, immune complexes are destroyed and inflammatory processes begin (soldiers try to stop the enemy from going any further, but many soldiers and villagers are killed, and the enemy gets closer and closer to reaching the castle, once there, the enemy takes over the kingdom). With inflammation in the intestinal lining you could experience cramps, IBS, diarrhea, bloating or vomiting and for inflammation in the blood you could experience sinusitis, skin conditions like eczema, ear infections, diabetes or even heart conditions, ADHD, depression or other neurological conditions.

We received the results of their tests about a week later and we were so surprised by both Liam and Ray’s food intolerance’s.  Both of them were dairy, gluten and egg intolerant.  Ray also had a pretty high peanut intolerance, and Liam had ‘elevated’ IgG levels for cucumber and apple too.

At first I must admit, the results made my heart beat super fast.  I didn’t know how I was going to be able to cut all of that our of their diets.  Gluten free products are extremely expensive, but then most of them still contain egg, so my mind was going a mile a minute.

I made an appointment to see the Nutritionist once I had the results and she spent an amazing 2 hours chatting with me and put my mind at ease completely.  She advised that for Liam’s cucumber and apple intolerance’s, I should cut them out of his diet for 5 weeks only and then reintroduce them (this gave me a lot of relief as Liam loves cucumber so much).  She also told me that both Ray and Liam will never be able to reintroduce dairy, gluten or eggs as their intolerance’s were just too high and most likely the cause of their villi being damaged and causing other issues within their bodies.  She helped me so much.  It wasn’t all doom and gloom!  I’ll cover the appointment with the Nutritionist in more detail in a separate blog post.

Although I did end up buying some very expensive gluten and egg free pasta’s and other overpriced gluten free rubbish, after about a week I decided to adopt the KISS approach – Keep It Simple Stupid!

Luckily Liam loves most fruits and veggies, and he prefers them raw.  Ever since he was a toddler he would ask me for ‘cucumber, cheese and tomato’, hence the blog name.  Unfortunately I couldn’t give him cucumber for the next 5 weeks, and cheese is now completely out of the question, so I prepared plates of grapes, watermelon, carrots, broccoli and cherry tomatoes with some chicken breast or cooked ham for lunches and he’s been perfectly happy with that.

Dinners I would make fish, peas and mash, or chicken, rice and mixed veg, or spaghetti with gluten/egg free pasta, or steak, chips and peas.

Now that it’s winter, grapes and watermelon are no longer in season, so I give him naartjies in their place.

As for Ray, he started losing weight quite nicely, but has since plateaued again, but we think that may be because of his sweet tooth and plan on cutting sugar out over the next month or so to see if that will jump start his weight loss again.

We have noticed a remarkable difference in Liam’s behaviour.  Before he would interrupt us constantly while we spoke, now he waits his turn before talking.  He used to randomly scream when he’d get excited about something (everything would excite him), we haven’t heard him shriek/scream for ages.  He seems more focused, much more helpful around the house, he’s remembering his manners more often than not.

EEG – Liam’s Story

Liam’s appointment for his EEG was scheduled for 19 January 2017, I had explained the process to him the day before and told him that he would need to sit as still as possible.  I was a little worried that he wouldn’t be able to with his motor tics, but figured that the technician would know how to deal with that.

When we were called in, Liam was asked to lie down on the bed and to be as still as possible while the technician popped the electrodes onto his head.  Liam ticced once during the process and the technician asked me what that was, so I explained Liam’s motor and vocal tics to her.  She nodded and continued popping the electrodes onto his head.  Liam fell asleep before she was done placing the electrodes and I asked her if it would be a problem with him asleep, she said it was fine and began the test.

She asked me a series of questions about Liam, like whether he usually falls asleep so easily, when did the tics start, what medication he was on etc.

After a little while she asked me to wake Liam up gently so that he didn’t move too much when he awoke.  I went to the bed and called his name and gently shook his shoulder until his eyes started to open and asked him not to move, but to stay awake.  His eyes were so heavy he could barely keep them open.

The technician asked him to breathe in and out deeply, which he did, but it looked to me like he was dozing off between breaths.  She then asked him to focus on something in the room without moving his head and to stare at the object.  After that she asked him to keep his eyes closed and placed a light in front of his face and then the light began to flash.  Once that was all done, she started taking the electrodes off his head and we were done.  The test ran for about 30 minutes from the time the electrodes were on his head until she took them off his head, and he was asleep for about 20 minutes of the test.

As mentioned in my previous blog post ‘What Makes You Tic – Liam’s Story‘, Liam caught a bit of a cold the next day, and I started giving him cold meds to clear it up.  He only wanted to eat raw fruits and vegetables and he did a pH test for fun which showed his alkaline levels were quite high.  We didn’t notice him tic between 21 and 25 January.

On 25 January our family Doctor told me that he really needed to see me about Liam’s EEG results and I made an appointment to see him on the afternoon of 26 January.

Once again, I thought that maybe now we would get a diagnosis of ADD, ADHD or Autism, but he told me that Liam has epilepsy.  I was shocked!  Epilepsy had never crossed our minds, and so I didn’t have any questions prepared for him.

He explained that Liam would ‘shut down’ for 2-5 seconds at a time, multiple times during the day and that it was a very difficult thing to spot, but it would explain why he had trouble following instructions and concentrating.  He said that Liam should never have been put on Ritalin and he should never be given any stimulant medication, as that would increase his episodes.  He told me that it’s not the convulsing kind of epilepsy and that many people immediately think of that, and what they see in the movies, when they hear the word ‘epilepsy’.  Liam will simply start doing something, he would ‘shut down’ for between 2-5 seconds, and then continue what he was doing.  In fact, the most dangerous part of this kind of epilepsy would be if he were swimming, and knowing how much Liam loved to swim, said he was quite relieved that nothing terrible had happened in the pool.  Liam would need to go onto anticonvulsant medication and he would more than likely grow out of it by his 18th birthday.

He didn’t call it CAE, or Childhood Absence Epilepsy, but as a mommy does, when I got home I consulted the great oracle Google and read as much as I could with the symptoms our Doctor had described to me.  With those symptoms in mind, I read that it was called CAE.

With the new found fear I had of medications, I read the package insert for Navalpro CR200 which was prescribed.  I read that it could cause liver damage, suicidal thoughts and a variety of other side-effects, and that the drug was also given to Bipolar patients.  Our Doctor had handed me a blood test form before leaving his rooms to test Liam’s liver after 2 months of being on the new meds, urgh!

Nevertheless, I gave Liam the meds as directed, but wasn’t entirely happy about it.  I was very worried that the meds would cause other problems.

About a week later, I popped into our Doctors rooms to collect the chronic medication form he had filled in.  Attached to the form was the Neurologists brief letter to our Doctor with his findings.  In the letter he noted that the EEG was ‘an awake EEG’.  This concerned me, as Liam was asleep for most of the test, and I wondered if he was aware of that fact, and if not, if the results would be different if he knew Liam was asleep.

I had also had time to do some research on CAE and so when I went in to collect the form, I also dropped off a list of questions I had for our Doctor.  In one of the questions I mentioned that Liam was asleep for most of the test.  It has been over 2 months now since dropping off the questions and I have still not had any answers.  Our Doctor has emailed me to say that he has been having difficulty getting in touch with the Neurologist, and that Liam’s file is on his desk and will remain there until he can get the answers to my questions.

In the meantime, I am still convinced there is a nutrition connection to all of the issues that have been popping up over the years, and I have been pursuing that idea.

What Makes You Tic – Liam’s Story

When Liam was seven and a half, and after almost a year of being on Ritalin (on and off… I would stop giving it to him during weekends or school holidays), I noticed a tic form.

The tic was in the form of him thrusting his hips if sitting, and jumping if standing.  We decided to keep our eye on it and see if it would go away before seeing his Pediatric Neurologist.  When he was a bit younger, and before he was on Ritalin, we did notice certain tics begin, but they soon disappeared, so we thought the same thing would happen this time.

In the third week, we saw the tic slowly disappear and breathed a huge sigh of relief.

Towards the middle of November 2016 I noticed that he started jerking his shoulders up.  It was then that I decided to take him off Ritalin.  I had read that Ritalin could cause a tic, and if you saw one appear, you should stop Ritalin immediately and the tic should go away immediately too.  Unfortunately, this was not the case in Liam’s situation.  The tic continued, and soon the shoulder jerk was coupled with a vocal ‘uh-huh’ sound.

At the time I was visiting our family Doctor for hormone issues I was experiencing and told him about the tic and that I had taken Liam off Ritalin.  He asked me about Liam’s EEG results.  We had never done an EEG because when I asked his Pediatric Neurologist, she said it was not necessary.  Our Doctor was devastated and gave me a referral for Liam to get an EEG done.

I made an appointment, but with Christmas approaching coupled with a waiting list, we could only get the EEG done mid-January 2017.  In the meantime, we watched as Liam’s tic became a shoulder jerk, vocal ‘uh-huh’ and a backwards head jerk.

You can view Liam’s motor and vocal tics here in a video I made of him reading.  I had to cut some of the video before posting it as he kept on losing his place in the book and the video was really long.

I read everything I could find on tic disorders and Tourette Syndrome and read that unless the tics have been happening for longer than a year, a Tourette Syndrome diagnosis won’t be made.

Knowing that some tics can come and go, I was quite relieved to hear that a diagnosis wouldn’t be made just yet if I took him to a doctor, we had time.  I read that tic disorders, or Tourette Syndrome was hereditary.  No-one in our family ever displayed any motor or vocal tics.

I had also read that bringing your child’s attention to the tic was not a good idea, so for a while we didn’t bring it up or talk about it when he was within earshot.  As far as Liam was aware, we didn’t know it was happening.  Then one day, his tics were so bad, I couldn’t help but ask him about it.  In all honesty I wanted to know if he was aware of it and I wanted to know if it was distracting for him.  So we were sitting on the couch and I asked him ‘Why do you do this?’ and I made the movement and vocal sound that he made.  I made sure my tone of voice wasn’t in any way anything other than loving.  He shrugged his shoulders and said ‘I don’t know, my brain just makes me do it.’  In that answer, I knew that he was aware of it, and he couldn’t help doing it.  I didn’t bring it up with him again.

In doing more research, I read that although Ritalin can cause tics to appear, and stopping the drug would stop the tic, Ritalin can also bring to surface an underlying tic disorder, so once you stop taking the drug, the tic or tics will still remain.

Liam would tic mostly in the afternoons, maybe because he was more tired than he was in the mornings, and we would only notice it if he was sitting still doing something like reading or watching tv.  However, by the end of December we saw him tic whilst swimming or playing outside.  It had obviously gotten worse and I was very eager to get the EEG done.

I asked his teachers to let me know if they see him tic at school, up until then, they weren’t aware of it at all.  I couldn’t believe that, because once he was home after school his tics were extremely obvious.

His EEG was scheduled for 19 January.  The day after the EEG he caught a bit of a cold, so I gave him some cold meds.  On 21 January we didn’t notice his tics, again on 22 January, no tic.  On 23, 24 & 25 January we still didn’t notice the tic at all.  We thought we were home free!  Then on 26 January it was back again.

When I noticed his tics were back again, I had to think about exactly what we were doing differently for those 5 days and I came up with two possibilities; either it was the combination of cold meds and his immune system being down, or it was what he was eating.  I concluded that the chances were pretty strong that it was because of what he was eating.

It had been before payday, so we had no junk food in the house.  He wasn’t feeling top notch, so he was asking for only fruits and vegetables (he normally eats loads of fruits and veg, but he would also eat a bit of rubbish during the day).  For the life of me, I cannot recall exactly what he ate during the time, but I know that we had cucumber, watermelon, grapes, carrots and tomatoes in our house, so he would have eaten a lot of it all.

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Liam’s pH strip compared to mine

We also keep a roll of OceanMilk pH Litmus Paper in our kitchen to test our alkaline levels every now and then, Liam had spotted it on 20 January and tested his pH levels under his tongue for the fun of it, the paper came out blue.  It was so noteworthy at the time that I took a photo of our strips and sent it to my mom.

On 25 January, when I got paid, I headed to Makro and bought frozen pizzas, chips, yogurts, and pretty much everything else that was in the more-for-less catalogue at the time.  I know for a fact that I would have thrown a frozen pizza into the oven for him for lunch after school that very day.

I started putting the pieces together, it was becoming clear that there was a nutrition connection and I was determined to get to the bottom of it.

Life Coach – Liam’s Story

When Liam was little, he made friends very easily, he had a group of friends in creche that he loved spending time with and he played so well with others.

When we moved him to ‘big’ school, he again made friends easily, he formed a bond with one boy in particular and they were great buddies.

Things changed when he went into Grade 0, his buddy left the school and the other kids decided whether they would like Liam to play with them or not.  Some days he would come home and tell me all about the games he played with the other kids.  Some days nobody would allow him to play with them.

As the year dragged on, I gradually saw Liam’s self-confidence fade.

He would always strike up conversation with strangers in the shops, particularly with elderly ladies, they loved it!  And he loved the attention he would get from them, but soon he began to withdraw and I noticed he was getting shy.

I also noticed that he began to suppress his emotions, instead of crying tears if he was upset or sad about something, he would literally suck it up; take a big breath and hold it, put his hands between his glasses and his eyes and then slowly breathe out.

One day I walked Liam to school, kissed and hugged him goodbye, and started walking out of the school grounds.  The walk took me past the Grade 0 playground where I would always try and spot Liam playing.  This particular day I stopped dead in my tracks.  He was with two boys who were shaking their heads at him and I watched them walk away.  I saw Liam’s head drop as he turned to sit on a bench nearby.  The image of him sitting on that bench has been burnt into my heart and brain.  My little six year old was clearly suppressing his tears, he was staring at his lap, sitting there in his hat, t-shirt, shorts, socks and little shoes, so many children playing on the playground, no-one taking notice of my heart sore little boy sitting on his own.  I walked up to the fence and called out to him, his head lifted at the sound of his name and I waved, he spotted me and I immediately saw his spirits lift.  He came over to me and I asked him if he was okay, he nodded and I suggested he find a family friend’s kid who was in the same grade, he said that it was okay, they would ring the bell soon for class to start.  I held his little hand through the fence and told him how much I loved him.  I had to leave, as much as I wanted to stay, as much as I wanted to walk back around, take his bag and bring him home with me, I had to leave.  Tears are streaming down my face as I type this, this memory breaks me every time I think of it.

These social and emotional issues began after we had taken Liam to the Educational Psychologist, so when I took Liam to see the Pediatric Neurologist I told her that Liam was having trouble making friends and expressing his emotions.  She told us that group play therapy would help him and gave me a few contacts.

At the time my dearest friend was working on opening a Life Coaching Centre.  It was a very exciting time as she was finding Life Coaches and tutors and finalising the rental of the rooms nearby.  She was planning on opening in January 2016.

We decided that we would try and help Liam at home in the meantime, he was starting at a new school soon, and hopefully with that he would quickly make friends and we would see his confidence grow.

I found a lovely suggestion on the internet to help get your child to open up and talk to you, and that was to ask him or her each night before bedtime ‘What made you happy today?  What made you sad today?  What made you laugh today?  What made you cry today?’ etc.  This worked for us quite nicely, he spoke to me about things that he wouldn’t normally have talked about.

One time I was going through the questions with him and when I asked him ‘What made you sad today?’, he told me that one of the kids at school asked him to take his glasses off so that he could see his glasses, so Liam did it and in return this boy started laughing at Liam’s squint.  I wasn’t upset with the boy, the majority of the children didn’t know that Liam had a squint as he was always wearing his glasses, so his eyes were always aligned.  The child probably thought that Liam was squinting on purpose as a joke, I don’t know, but I do like to give people the benefit of the doubt.  I did tell Liam though that he didn’t have to take his glasses off at school when someone asks him to, and I actually preferred it if he didn’t as I didn’t want anyone breaking them.

Soon the new school year began, Liam was very excited about going to a new school and as we had hoped, he quickly made a friend with another boy who was also new at the school.  They hit it off and I was so grateful that my boy had someone to play with!  However, during the first term, in our parent/teacher meeting, his teacher told us that Liam and his friend were super close, which was great, but they both refused to play with other kids and would also kick up a fuss if they were doing group activities but weren’t in the same group.

By now my friends business was open and she had some pretty awesome Life Coaches, including herself, that could work with him.

He started his sessions in February 2016 and his Life Coach started giving him the essential tools and skills he needed.  She would give him challenges for school, like, to ask the girl that sits next to him in class how she is.  His Life Coach helped him identify emotions and guided him with healthy ways to express them.  She also worked on fine motor skills and did activities with him during their sessions together.

By the third term of school, Liam was friends with almost everyone!  His good buddy and him were playing together, or separately, or in a large group, or alone.

He was starting to cry tears again!  I took full advantage of those tears and would just hold him, tell him that it will be okay and kept holding until the tears stopped.

He also started handling frustration so much better.  Before he would ball up his fists and shake, or bang whatever it was that he was busy with on the floor.  One time I caught him punching a computer screen out of frustration.  Now he seemed to step back, take a break, walk it off and return to the task once he had cooled down.

He still has a Life Coaching session once a month, I feel it is important for his emotional well-being.

I have an extremely kind and compassionate young boy, he is able to empathise, he feels terrible if he thinks he’s hurt someone’s feelings.  He is a fun loving, amazing little human being who tells me he loves me, tells me when he likes my hair a certain way, notices when I’ve changed the colour of my toenail polish.  He adores babies and loves to be near them.  He asks questions about everything and is also quite the witty fellow.

His cousins had a tiff the other day while we were in the car and Liam started to sulk, I thought he was sulking because my mom and I were singing a Roxette song really loud, so when I turned the volume down and asked him why he was upset, he said that he just wanted his cousins to stop being angry with each other because they are brothers and they should love each other all the time.  I told him that sometimes brothers fight, but that didn’t cheer him up, he only cheered up once they apologised to each other.

The other day when I went to fetch him from school, a little boy had slipped and fallen, he wasn’t hurt, but he was upset and refused to stand up and walk to his mom’s car, Liam went up to him to help him up and make sure he was okay.

He is still shy when meeting new people, but that is okay, we are working on his confidence and self-esteem every single day.

I shudder to think where we’d be now if it weren’t for the help of his Life Coach, a very special person who, I feel, every child could benefit from seeing.  Life throws us so many ups and downs, we should equip our children with the skills to deal with the curve balls.

Out of all of the specialists, therapists and doctors Liam has seen, there are three that I don’t regret, I don’t feel we wasted money on and I would do it all over again if I had to, and they are Life Coaching, Vision Therapy and Occupational Therapy.  They are doing what they do out of their passion for helping children, it shows in the way they interact with your child and they get just as excited as you when there is a breakthrough.

Pediatric Neurologist – Liam’s Story

After a long wait, our appointment with the Pediatric Neurologist finally arrived.  I was extremely nervous as I had an idea that she would prescribe Ritalin or Concerta, and I wasn’t too certain I was prepared to give Liam either drug.

She first called me into her room and we had a talk about the issues Liam was having, I told her about the Educational Psychologist’s report (which I had emailed to her way before our appointment, but which she didn’t seem to have on hand).  I explained all the steps we had been taking to give Liam the help he needed.

She then asked me to wait outside so that she could see Liam separately.  After a little time, she let Liam out and asked me to return.  She had noted down some of the issues she had observed, and advised that she thought Ritalin would help.  I asked her about an EEG, as this was a step suggested by the Educational Psychologist, however, she told me that it was not necessary.

She handed me a prescription and told me to return in a month so that she can see how he’s doing on it.  She also told me that if I notice any ‘tics’ forming, I should immediately stop giving him Ritalin and make an appointment to see her sooner.  I paid the R1900.00 new patient consultation fee and off we went.

I realised some time after the appointment that we still didn’t have a diagnosis.  This frustrated me as I was really hoping for some clue as to what Liam had… ADHD, ADD, Asperger’s, Autism, whatever!  Obviously I didn’t want him to have any of those, but clearly there were problems and surely there had to be a diagnosis for it?

With script in hand, I had never struggled with an inner battle as I did that day.  Looking back, I wish I had listened to my gut, however, I filled the script and started Liam on Ritalin on the Saturday so that I could keep an eye on him.

I think that at the time I was desperate to help my child.  I felt guilty driving him from one appointment to the next after school most days.  My heart was aching watching him work so hard every single afternoon after school on homework and exercises.  I felt conflicted as teachers were bringing issues up and I didn’t know what more I could do.  We also had the financial strain of paying for therapies, specialists, assessments and for placement in a new school.  I just thought that maybe Ritalin was the answer we were looking for, so decided to try it.

Initially Liam was on the 4 hour acting Ritalin and we saw a change immediately.  He got his Spongebob Squarepants colouring-in book out and started colouring.  We were amazed!  Our kid, who absolutely hated colouring-in, was now colouring in the lines, using more than one colour on the page and his work was so neat!  All Liam did that whole weekend was colour-in, we were shocked.

On the Monday, he asked us if he could take his colouring book to school with him and we said YES!  Absolutely!!

We also noticed that he didn’t want to eat while on the drug.  We knew this was one of the side-effects, but thought that maybe Liam wouldn’t be affected as his appetite was always huge.  It was a big surprise when he didn’t ask for a snack or a meal until later in the afternoon.

By the Wednesday, Liam developed a very high fever.  I gave him some meds to bring it down, but it didn’t help.  I work from home, so had been busy in the office and I wasn’t able to pay too much attention to Liam, but by 5pm his fever was rising and I didn’t like it.

I was convinced it was the Ritalin (still am), I took him to the ER and had the Doctors take a look at him.  They ran blood and urine tests on him, he had x-rays taken, but the Doctors couldn’t explain the fever, they did say that it couldn’t have been the Ritalin though…

Eventually once they were happy his fever had broken they sent us home with some meds and told us to keep an eye on him.

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Sick day from school

Soon after returning home his temperature started to rise again and we gave him some of the meds, which he threw up immediately.  I decided to give him Nurofen instead and it brought his fever down again.  We kept him home from school the next day and he seemed fine, went straight back to colouring-in.

We were almost near the end of the school year and I was hoping for some positive feedback in the last term, but as always, discussions were always only on the negative and never on the positive.  Liam was struggling socially, now more than ever as he would take his colouring-in book to school and just sit and colour.  He still struggled to follow instructions and they were concerned about his concentration.

I felt so frustrated.  We were doing everything we could, what was the problem!?  Why couldn’t we have a parent/teacher meeting that also focused on the positive.  I felt that Liam was ahead with his reading.  He was reading Dr Seuss green back books without a problem earlier in the year already, I knew for a fact that some of his schoolmates weren’t able to read yet.  In the meetings I would always get the ‘Liam is behind with this, and Liam is behind with that’, ‘his classmates can do this, but Liam can’t’.  In my desperation to get something positive out of his teacher once, I asked her how his classmates were doing with reading, she told me that she cannot discuss or compare Liam to the other children.  URGH!  Complete and utter frustration!

Luckily his reports were always pretty good for a kid who had so many issues and difficulties.  His strengths seemed to be in Math and English, his weaknesses were usually with Art and PE.  However, with PE, no matter how many times I explained that Liam had no depth perception, this was never taken into consideration.

Liam graduated Grade 0 and we had school holidays and Christmas.  I didn’t give him Ritalin during the holidays.

He started Grade 1 at the new school in the new year and I had high hopes that things would begin to improve.  And they did.  Liam was getting more attention in his classes.  His teachers had wonderful things to say about him.  We had our first parent/teacher meeting during the first term and I have never had such positive feedback.  The meeting was done in such a way that, although there were a few issues that they had noticed, the focus was on the positive.  I really felt we had made the right choice with his new school and I loved the intimate setting.

We saw such great improvement that Liam’s Occupational Therapist felt we could end his sessions with her.  His Vision Therapy also came to end as they felt there wasn’t much more that could be done at the time with his vision.  For the first time in so many years we were no longer rushing from one therapy session to the next and from one appointment to the next.  It was wonderful!

During the July school holidays I made a decision and took Liam off Ritalin completely.  I decided that I wasn’t going to tell his teacher that I had taken him off, I wanted to see if she would notice.  My plan backfired in August 2016 when I got a message from her saying that Liam was having trouble concentrating in class.  Oops.

I didn’t have any Ritalin at home as we had run out and we needed to make an appointment with the Pediatric Neurologist again to renew his prescription.  Luckily because Liam wasn’t a new patient, we got an appointment to see her the next week.  She saw Liam first, then asked me to go through while Liam waited in the waiting room.  She asked me why I had taken Liam off Ritalin, I told her that I wasn’t entirely happy with him on it, he had no appetite while on it and I was worried about the other possible side-effects.  I preferred him off Ritalin, but was also concerned about his school work if he didn’t have it, so I was extremely conflicted.  She chatted with me for a while and we agreed that Liam would go back onto Ritalin, but we would ween him onto the slow release kind.

I had to give him his normal dosage first, then after a couple of weeks start giving him the slow release, higher dosage tablet.  One day before I gave him his first slow release tablet I noticed he started to jerk his hips.  I didn’t want to panic about it because he had displayed some ‘tic’ behavior before when he was much younger, and after a couple of weeks the ‘tic’ would disappear as fast as it started.  I spoke with Ray about it and we decided that if the ‘tic’ persisted for longer than a month, we would contact his Doctor.

As the month went on we noticed that if he was sitting down, he would thrust his hips, if he was standing up, he would jump.

It did appear as though the ‘tic’ had started to subside, and so I didn’t contact his Doctor and we pushed on.

During the final term of school I noticed that Liam started jerking his shoulders upwards, after witnessing this for a few days I took him off Ritalin and decided that I would never put him back on it, there had to be another way.  I had read that if a child displays ‘tics’ whilst on Ritalin, you should stop the dosage completely and the ‘tic’ should go away.  Unfortunately this was not the case.  Soon he was jerking his shoulders upwards and making a sound like ‘uh-huh’ at the same time.

During the time, I was visiting our family GP for a hormone issue I was going through.  I told him about the ‘tics’ Liam was displaying at the time and I gave him the low down on what had been happening over the last year since he started Ritalin and that I had decided to take him off it completely.  He asked me what Liam’s EEG results were and I told him that his Neurologist had said it wasn’t necessary.  I got such a fright when he suddenly said loudly ‘NO!  Nobody should ever be put on Ritalin without an EEG!’  The blood drained from my face.  I felt accused, and my response was something like ‘You know!  All you doctors are assholes, one asshole says this and the other asshole says that!  We put our trust in you.  I don’t have the qualifications you are all supposed to have.’  His reply ‘You need to take him off Ritalin immediately.’  My reply ‘I told you that I took him off Ritalin last week already!’  In my defense, I was there for hormone issues and I realise my reply was extremely defensive and childish and that he was in fact upset with the Neurologist and not with me.

He wrote a referral for an EEG and I left feeling angry at the Pediatric Neurologist, I had asked her if we can do an EEG and she had said it was not necessary.  Now my child was ticcing all over the place and I felt like we had taken a massive step backwards.