Our story, the journey so far

It almost felt like going through time warp writing this especially as a lot of our journey was done sleep deprived and with a lot of stress!

I had a very easy pregnancy with Lachlan, apart from a bout of sciatica I had no other complaints.

I again went overdue with him (as I did Riley) only this time I opted to be induced as it was for us at the time the right thing to do with a 21 month old at home and little support around us in case I went into labour whilst hubby was at work. (I also had to be partially induced with Riley as I went into labour and stalled at 3cm and he had to be born with forceps so I was hoping to avoid all that stress again).

Labour was a breeze (compared to that of Riley’s) after the induction period it lasted all of about 2.5 hours. Little (or should I say not so little 3.92kg) Lachlan Cooper was born into the world he latched on like a baby possessed and fed and slept like a little dream so life was good.

 

Collage from birth (good and bad weeks) till 2 years of age

Collage from birth (good and bad weeks) till 2 years of age

It was about the 3.5/4 month mark that Lachlan developed eczema and from my notes in his Blue Book he had a really bad bout of it which required antibiotics and steroid creams.

(I was no stranger to steroid creams in that I had to use them for a very small period of time with Riley when he was small as he also had eczema – his was more environmental issues as he has dust mite and pollen allergies, and once we started air drying his clothes inside his eczema disappeared within a month or two. I never liked to use them & used the least amount I could as I didn’t believe what the GP was telling me that these steroid where safe to us.. I mean they are steroids!??

I battled his eczema round after round and had another lot of antibiotics much to my dismay, I personally hate the use of antibiotics but it had gotten so bad even after following all the GP’s advice it was the only way of keeping him out of hospital with a skin infection. At this point I felt hopeless, like I’d let my son down and life with two babies under 2 was getting on top of me.

Being the very determined person I am I threw my very sleep deprived self into researching everything I could about eczema. I would read till I fell asleep and even then tried to read some more. The more I read the more connection with food allergies and allergens in general I came across, I asked our GP who didn’t think there was a connection but my gut was telling me something wasn’t right.

I tried a dairy free period of which I saw a significant improvement in Lachlan’s skin (I wasn’t eating much dairy at the time as dairy isn’t really my friend either) and when I would reintroduce it his skin became worse. I also noticed every time I breastfed him his face would become quite red and hot to touch for a period of time and would then subside.

Months past and I plodded along with the boys doing the best I could with a very unsettled cranky itchy baby who would constantly attack his face. I was  awaiting an opening with a paediatric dermatologist but there was a couple of months wait to see one so I continued to research.

Then on the 8th November 2010 I was in the kitchen clearing up the boys dinners when I gave Lachlan a baby teething rusk as his teeth were giving him some grief only to turn around and find his lip had started to swell tenfold. Then the drooling started I knew something was going horribly wrong so rang 000. I can’t recall much of what happened in the time I was on the phone or when the ambulance got there (Thankfully we lived about 10 mins from a major hospital at the time and the ambulance arrived quite quickly) but I remember I was shaking and terrified with a toddler sitting with me just waiting unable to do anything. I still feel sick to my stomach about that night. The two paramedics who arrived where just amazing, they calmed me down, got Lachlan in the ambulance and started to administer adrenalin to stop his reaction. At this point I remember Lachlan trying to scream but he couldn’t, his eyes wide open staring at me helpless.

Being so little (6 months old at the time) I knew how quickly a baby’s health could deteriorate so I was petrified I would lose him. They worked on him in the ambulance for a bit and managed to stop the reaction and my husband got home at this point and Lachlan and I were driven as fast as they could to the ER. It didn’t help that evening a huge hailstorm was brewing and the traffic was horrendous. It felt like the longest drive of my life.

We got into the ER straight away and given his age he was given priority and it took a good 3-4 hours to stabilise him and even get the necessary needles/drips etc into him. It took 3 or 4 nurses to get one drip into him I think we had seen half of the ER staff by this point as they couldn’t find his veins. It was horrible to watch him go through it and he was badly bruised all up his little arms after it. Finally stabilised very late that night we got transferred to the children’s ward waiting room of the hospital to wait for a bed.  The two paramedics I cannot thank enough, they came to see us several times whilst we were waiting for a bed just to check up on him.

I remember it being a very long sleepless night, I couldn’t let Lachlan go nor did I want to. I think I eventually fell asleep with him on my chest in the world’s most uncomfortable chair. I was physically and mentally drained that night but so thankful to have my baby boy safe in my arms.

The next day the hospitals head paediatrician and what felt like a thousand trainees came to access Lachlan. It was recommended that we avoid all dairy, eggs, nuts, peanuts and wheat until our appointment which they had organised at Westmead Children’s Hospital Allergy clinic in the December until we knew what sort of allergies we were dealing with. We were not prescribed any Epi Pen given his age and were just to go on life as normal until then. The waiting and not knowing what to feed him for this period was very hard. I almost became too scared to feed him anything and I didn’t have any other advice from the hospital staff as what to do.

As fate would have it we actually had our appointment with the specialist paediatric dermatologist scheduled for later that week. (I had forgotten this until now I went through my notes in his blue book. I always thought we saw him before Lachlan’s reaction). When we arrived he was quite arrogant and fobbed off every question I had regarding food allergies, sensitivities and their links to eczema. He told us straight up there was no connection at all it was all environmental and in his words “was something he would learn to live with for the rest of his life” and it could be managed easily with steroids and antibiotics.

As you can imagine we were outraged,  Needless to say we never made the follow up appointment with this dermatologist and waited for our allergy testing for the following month still forever researching.

We celebrated a birthday and  Riley was helping me make the birthday cupcakes he accidently brushed up some raw egg on his cheek, he immediately broke out in a rash all over his face. My heart sank and thought oh no not again so I quickly gave him some antihistamines and within 10 mins he was fine. I rang the allergy unit and spoke with the allergist we were due to see and he booked Riley in as well for cross testing with Lachlan. (Riley had been eating eggs baked in things with no reactions since about 12 months old).

December rolled on and Hubby, Riley, Lachlan and I went to Westmead Children’s hospital. It was a long day with two kids in a waiting room with lots of tests and questions and trying to recall the events of that evening. The allergist had us have skin prick tests for both boys.

The verdict for Lachlan he tested positive to Milk, Wheat, and Peanuts, Egg (both yolk & white) with the egg and milk readings being quite high. I sat there reading and being told the results and the flood of information that came with it and burst into tears. It was so much to take in and so much to process in such a short amount of time. I really wasn’t expecting a list that extensive and they had only tested the major allergens today not to overload us.

Riley’s came up with eggs and peanuts. (He had never previously had peanuts before thank goodness!) The allergist was confident that his readings to eggs and given he had eaten them before with no major issues he would grow out of but for now we were just to avoid till the next appointment.

We saw the Dietician and spent some time with her got handed a folder full of information and that was it till March… We could email or call with any questions but that was it. No Epi Pen just we will see you in 3 months.

Lachlan’s wheat reading was considered low so they arranged for him to be challenged in hospital at this time as he did not have the developmental skills as of yet to be able to eat textured foods (they test with weetbix in the oral challenge). I did question the allergist and asked him in order for me to continue breastfeeding should I go allergen free which he said he didn’t recommend as it was very stressful on the mother. My heart told me it was the right thing to do so I did it anyway. This is when I put my already very healthy diet under complete scrutiny. Everything changed for the better when I decided to do this. Lachlan’s skin started to clear up (but we would still have our up and down weeks) but we seemed to be getting there but still using steroids.

At this time the allergist discussed a formula if I wanted to go down this path, my heart was telling me no, my head was fighting me with maybe this is the way things need to be? so we did a one day trial of soy formula (which I have only just forgiven myself about recently) as they would not give me a script for a specialty formula for him. Both he and I cried that day like nothing else, he refused to drink it and I don’t blame him it looked and smelt awful, and I immediately knew that there was no way I was going to do this. I also started researching soy at the same time and knew after reading the first 2 or 3 documents that this was NOT ok nor would I continue. If I had to remain allergen free I had done it for so long I could do it till 12 months of age at least.

March came and we went in for the 6 hour challenge. We were placed in a large room filled with kids, and their parents and a host of nurses and allergists and this is where we would remain till the end of the challenge and observation period to make sure no delayed reaction occurred. First they nurses started with a smear of weetbix (in water) on Lachlan’s cheek and then waited 10 mins, no reaction meant we moved to the next step of on the lip, wait, not reaction, then move onto inside the mouth etc etc till he was able to eat a full spoon of weetbix with no reaction.  We were considered a pass by the end of the challenge but needed to keep this up to build full tolerance to wheat and we had to stop if his skin got worse or we had any other symptoms. We did this and didn’t see any major changes in his skin so kept going with it to build the tolerance of it.

It was the month before in February that I purchased my Thermomix. Not trusting anything from a shop other than pure veggies, fruit and meat I learnt quite quickly that this machine would save my sanity with two young children and the amount of meal prep that lay before me.

I weaned Lachlan at 13 months and he never went on to any other form of milk or formula much to the dismay of the dieticians. Riley had never been a milk drinker nor did he have milk after he weaned at 12 months and he was a great eater so I had no concerns. Once I had weaned Lachlan I instantly saw changes in his skin. Even though I was completely allergen free he was still reacting to some of the proteins in my breast milk.

In this time we had decided to sell our older style home (which wasn’t helping the dust mite allergies Riley & I have or Lachlan’s eczema despite it being an all timber floored home) and build a new one, a fresh start for us all. So we hunted around for a carpet free home to rent whilst we waited for our land to register and the build to start. We noticed a change in Lachlan’s skin when we moved into our rental home which was all tiled. The older style home (which was still very neat and tidy) still had 50+ year of dust and obviously wasn’t helping with Lachlan’s skin.

In this time I started experimenting with different recipes trying to get my head around allergen free cooking now he was a toddler and not a baby although the delay in lumpy textures meant he was on purees for a lot longer than what most children are.

We were back in June for more testing and this time we tested tree nuts as well which added to our list of positive skin prick tests.

It was in the September that Feeding Two Growing Boys was born. I had lots of my personal friends asking me for recipes and a few allergy forums I belonged to at the time so I started the Facebook page to keep in touch with others newly working their way through this maze.

It was during this time that through pure trial and error I worked out Lachlan was soy and beef intolerant. This was through short elimination diets (which I talk about in my blog post “The right diet, is there such a thing”.) The nappies that came from eating beef where horrendous. Think about the worst nappy you have changed ever and multiple it by 10 and then some and this was 6 – 12 times a day. Something was very very wrong. I later came across the cross reaction theory in that children with cow’s milk allergies have an extremely high percentage (the actual percentage escapes me and I can’t find the source of where I got the info from anymore) of being cross reactive to beef. The stomach pains and screaming that happened at night time where like that of a child having nightmares, it was so heart wrenching to watch him in so much pain so beef & lamb (similar symptoms) were off the menu and through more eliminations other foods such as broccoli as well.

So I did the cooking with all the easy substitutions (egg replacer, Nuttelex etc) whilst I was finding my feet into healthier allergy friendly cooking. I found most of the recipe books written and the info given from the hospital to be high in sugar, bad fats and made it my mission to work towards better options. This is when I stumbled onto Fed UP by Sue Dengate. We trialled the “Failsafe” diet for a short period but once again I knew it wasn’t right for us. I found it very highly processed and once again bad fats and the no fruit other than pears honestly freaked me out. I grew up eating every fruit imaginable and the boys loved it to so this was going against everything I knew!!! (I know this diet works so well for so many but for us it wasn’t the right fit, we were always additive, preservative and colour free which I completely agree with we should all aim for this).

I then came across a few gut healing books which at the time had me in a spin, The Body Ecology diet by Donna Gates which at the time I had to reread a few time to process the information as it was full on. How on earth was I going to get a toddler to eat what she recommended??  I mean the boys where great eaters but I didn’t see it happening. I understood the connection with healing the gut so I kept researching as I was determined there had to be better ways to manage this but I did take a break with the trying to find the right solution as life with the two boys and the new build and running a business was all I could take at that point so just went with keeping Lachlan fed and safe which I did.

We had our next appointment in the May and we added a few more tree nuts to the list of positives and milk & egg readings were higher again.

A much happier, healthier child actually wanting to partake in activities

A much happier, healthier child actually wanting to partake in activities

Once we moved into our newly finished home in June, I had gathered enough information for me to start thinking about making some big changes. I did several more elimination diets (mostly gluten and wheat free) all whilst having a toddler who had gone from sleeping quite well to not at all. He was itchy, cranky and we were both so sleep deprived it was a horrible time one where I am surprised we both survived sane. Something had to give; I was in tears constantly through sheer frustration and exhaustion. The upkeep of the house from a constantly skin shedding child was huge, vacuuming his entire bed morning, after his day sleep and before bedtime, the floor and keeping our house clutter free was essential as was the mountains of washing.  I also found Riley playing up a lot in the last few months given all the time I was spending researching and trying to keep Lachlan from attacking himself and the amount of cooking I did. It was exhausting to have to deal with them both.

It was at this point I found a lot of the Failsafe ladies had moved onto Biomedical Dr’s and specialists and started investigating that route and then noticed a lot of them had then moved on to GAPS which I started to research (another Gut healing program), before taking a leap of faith and seeing a Naturopath as everything was pointing to leaky gut something no Dr knew anything about. The allergists couldn’t even explain it to me I felt like I was the one giving them a lecture every time we had an appointment.
Everything changed from here. We started him on a few supplements (I had always had him on magnesium, flaxseed oil, a probiotic and a green calcium through my research) but our naturopath wanted to detox his liver. We then ordered the IgG blood test in which we opted to test 93 foods this one test has changed our lives dramatically.
Lachlan tested very highly to grains (including rice, oats, barley and wheat). I always said  I had a gut feeling that something he had every day would come up as an irritant (rice) and sure enough it did. I started researching Grain free diets and it lead me to Paleo which I had heard quite a lot of following the pages that I had been for sometime but never thought to look into it anymore. Since being loosely Paleo (and I say loosely as Paleo is a diet rich in red meat, eggs and nuts are also included so we couldn’t follow 100% due to his known allergies) his eczema within a couple of weeks was nearly all gone. It was like a miracle cure that you hear or read about. I was amazed how quickly his body responded, the grains were irritating his gut and therefore causing the inflammation (which is what eczema is – it’s your bodies way of showing you something on the inside is not happy!).
To date we are currently doing the full 6 month elimination of all the foods he tested to and will then slowly reintroduce one by one and see what happens. I have also loosely done a Automimmune Paleo diet with him which is Paleo with some exclusions (nightshades, seeds, eggs etc) which a mix of the two is working well for us. He does tolerate spelt so we have chosen to keep that in his diet but only use it very sparingly as we don’t want to upset his healing gut.
He is now back to sleeping 12 hours a night, isn’t shedding the piles of skin a day so my workload has decreased and he isn’t scratching nearly as much (if he is tired or bored he will start out of habit).  He is such a happier little boy and has gained so much confidence in himself (he was very self conscious about his skin even at the young age of 2, he wouldn’t let anyone look at his skin but me and even then he was embarrassed about it) and now he is quite happy to show you his “Lovely skin, like Riley’s” as he calls it.
Last week we had our yearly skin prick test review and to no surprise to me he tested IgE (an actual allergy) to wheat again the same as when he was originally tested as a baby. He also tested IgE to rye, oats and barley which he also did in his IgG intolerance testing. Surprisingly though the allergist wants to perform a egg challenge on him due to his egg reading coming down slightly. Now I know from his IgG tests his body is highly rejecting eggs as a intolerance so he may never be able to eat them but it would be nice to think we could move from being labelled highly allergic to intolerant to eggs.
We have a month and a bit to go on the recommended 6 month elimination we are currently doing based on his IgG results which I will then sit down and reevaluate our next move.
How far he has come!

How far he has come!

So there you have it, long but to get the full story it had to be this way.

It’s been a long and stressful journey but I tell you it’s opened my eyes to so many different things and opportunities I would have never considered even doing in life like running FTGB’s facebook page, starting to write a cookbook and helping so many people who are at their wits end with their kids allergies/intolerances or just who are just overwhelmed with information they don’t even know where to start. I’ve been there and I know how they feel, it’s a lonely long road to travel and I hope that FTGB’s is a place you can come and “nut out” ideas, theories and most of all be supported by people going through a similar journey.
If you suspect leaky gut or digestive issues with your children or yourself it’s worth investigating the Paleo diet or even GAPS or Autoimmune Protocol if you have a confirmed autoimmune disease.
With 70% of our immune system located around the digestive system it is essential to eat well. Your overall health literally depends on it.
~
Kat
Disclaimer:
The information shared on Feeding Two Growing Boys is based solely on my own personal experiences and research.
The information offered here is not intended to replace medical/trained holistic advice.
Before beginning or making any changes please always consult your chosen health care provider.

How far we have come

Today is a bitter-sweet day, my baby boy turns 3. Part of me is super excited for the next chapter from toddler to preschooler and watching him continue to learn and grow, but there is a huge part of me that feels robbed of the last 3 years. It’s been a long stressful road full of fear, doubt, grief, self blame and stress and for a large portion felt like I was just living in survival mode.

I still have days like this but thankfully  not very often now that Lachlan is well on his way on his gut healing journey, but the whole process of dealing with a child with special needs is both mentally and physically draining regardless of their medical condition. It places strains on your marriage, relationships with other children and the way you conduct your day to day life to accommodate that child’s extra needs.

I’ve had people say “be thankful he is healthy” and “this is all you have to deal with” which to me personally is a kick in the guts. Yes my son isn’t dealing with cancer or a heart condition requiring surgery but his condition is still life threatening (anaphylactic allergies) and if his eczema was to ever become so infected it could land him in hospital with a severe infection as so many children who suffer eczema do. And this is without even touching on the challenges faced with every day outings and social gatherings for an anaphylactic person, I could be here for hours.

The sleep deprivation for both (mother and child) from a constantly uncomfortable child is torture. You expect to lose sleep with a baby/toddler but with eczema it’s a vicious cycle, an overtired baby/toddler means more and more scratching which leads to broken and inflamed skin which if not properly cared for equals infections and more scratching equals no sleep for Mum or bub.

Then there is the constant daily cleaning and washing, vacuuming and dusting to keep the house free from all the dry dead skin that severe eczema suffers shed, and my goodness shed they do! Add the stress of constantly monitoring every morsel that goes into your child’s body (and that every single thing he eats is made by yourself as you cannot risk cross contamination nor does anything pre prepared meet his dietary requirements), keeping food diaries and tracking flare ups and never once forgetting the digestive enzymes and supplements he needs to support his gut healing process. This in itself feels like a full time job and can be very overwhelming.

When I was compiling the pictures to do this blog post it bought back so many memories. To be totally honest with you all I haven’t been able to look his baby pictures from the really bad times till now… they have always reduced me to tears.

But through the many ups and downs this little man although tired, cranky, itchy and sometimes in pain has shown that he is one tough little cookie and that he isn’t going to let eczema beat him.

So I owe it to him to remain positive and strong and look back at all the happy and positive times we have had over the 3 years.  To look at him now you would never have known this is the journey he has been on.

How far we have come

(Left – Lachlan now, taken 2 weeks ago just before his 3rd birthday,

Top Left – Lachlan prior to any signs of eczema and then the remaining 3 photos showing to some extend how infected he became (and this was following a GP’s and dermatologists instructions & medications before I knew better!)

With all this I can happily and proudly say that after years of trials, errors, diets, eliminations, blood tests  & pouring every spare moment I have had into researching and reading anything and everything I could get my hands on, both holistic and traditional, what we are doing now is working and the above left hand picture is proof of this.

Not only is he a happier child, my stress levels are down, our house is a less stressful place to be in, my workload in skin care and upkeep of our home environment is no longer as demanding and all because he is healing from the inside –  something traditional avenues such as Dermatologists and allergists do not address in their practises. Steroids, antibiotics and lotions and potions are just band aid solutions, we need to be looking at the root of the problem and the root of the problem lies with gut health.

I am pleased to say Lachlan is almost nearly eczema free (we are working on the habitual scratching now which is a hard habit to break) but he is a thriving, happy, healthy and a very active little boy with the most beautiful placid nature that makes your heart melt.

I could be having the worst day and he will come up to me and give me a cuddle and say “I love you Mummy” and all is good in the world. A mother/child bond is always strong but when you have gone through something like Lachlan and I have you are so much closer.

Next chapter

I’m excited for today as it is a day of letting go of the harder chapters we have lived and starting the next happier and healthier chapters together.

So, Happy 3rd Birthday Lachlan, we love you more than you will ever know and from here the sky is the limit as we have already conquered so much.

Mummy

~ Kat