Hope for healing: childhood chronic health disorders
Emma is a mum of 2 beautiful boys who has been to hell and back before finding the GAPS protocol, and an answer to her prayers. She was a client of mine (back when I was still coaching): I supported her when she started the GAPS Introduction diet for a multitude of chronic health issues, the worst of which were SPD, Failure to Thrive and severe eczema. She has kindly written their story to offer hope to other mothers who are stuck in the hopelessness of the current epidemic of childhood chronic disease. I'll start with the miraculous Before and After pictures of her eldest, Mason. When I first saw these, I got quite tearful at the incredible impact that a lioness mother can have on her child.
Mason and Harrison's Story
We have been parents for 6.5 years, and so far while we have quite a list of challenges we have battled, we are winning these battles. It has taken some time, but we are on track to making a life full of health and hope for our children. It has not been easy, and at times it has seemed all too hard and impossible. This is a journey of parenthood that could have been different, it should not have been this hard. The impact our Gut has on future generations, and the choices we make, and that are forced on us from the moment of conception, are what shape our children and families. For us, like many the list of issues is long: SPD, anxiety, IBS, chronic bronchitis, failure to thrive, global developmental delays, Sleep apnea and disorders, severe stutter, hearing loss, anemia, severe and chronic eczema, asthma, low muscle tone, behavioral issues and the list just goes on.
When our eldest son Mason was born, our lives changed forever, like it does for any parent. Mason had quite a traumatic entry into the world, I received IV antibiotics during labour due to the meconium in my leaking waters. He was showing distress throughout the entire 12 hour induced labour. I started to push uncontrollably, and was told not to push as I was not ready. I was given an epidural to stop me from pushing, they checked me low and behold I was dilated... The obstetrician used a vacuum with such force, that the vacuum flew through the room and hit the back wall with a bang! The resus team were called in case of the worst, thankfully he seemed fine when he was born!
It was a busy night I was told, so I was left in the labour ward alone with Mason overnight, he was crying, I was crying, and my catheter bag was so full it was starting to back track. I tried to pick up my crying baby but could not reach him. The next morning when I finally saw a nurse I remember telling her I have NO colostrum at all! None what so ever, after many midwifes squeezed my nipples they also agreed that strangely there was nothing… 3 days later we started supplementing with formula waiting for my milk to come in… eventually it did, but with no colostrum Mason was not off to a great start.
At 10 days old I noticed his clavicle looked strange, an x-ray later that day showed it was fractured and healing…I realised at that point that the vacuum most likely flew off across the room when Masons shoulders were lodged in my pelvis, fracturing his Collarbone in the process. This, along with the IV antibiotics, the state of my health and the forced induction resulting in no Colostrum are what I believe set a catalyst for the following 6 years of his life.
By two weeks old Mason started to develop skin issues, baby ache, very severe cradle cap, and then eczema. At 8 weeks old I vividly remember his appointment with a highly recommended private pediatric dermatologist at the children's hospital. He had skin prick tests which all showed no allergies… I was told to cover him in cortisone creams and just keep doing so until it resolved. At 8 months or so the skin prick tests again showed no allergies and we were referred to a private eczema nurse clinician at the Children's Hospital. She told me Mason needed antibiotics and bleach baths everyday… his swabs showed high levels of staph in his eczema and his whole body was covered in bleeding, scabbing rash. She took out a rough cloth, soaked it in a bleach solution and began scrubbing his bleeding, scabbing skin… I was to hold him down so she could do this…she said he also needed more antibiotics and that I should scrub him in this fashion every day before putting him into a bleach bath.
She gave me a long list of supplies to buy which included bulk amounts of cortisone creams from the pharmacy, tubigrip and bandages, oils, moisturizers, scouring sponges, bottles of White King Bleach and bags of pool salt from Bunning… I did everything she said, I was so desperate for my little boy to be free from his pain. But we were both traumatized. Mason began to get scared of having baths or me applying creams to him.
Due to Masons fractured collarbone we were assigned a pediatrician at the hospital where he was born. We saw her on average once a month as Mason seemed to have a never ending and growing list of medical problems and delays.
At 9mths old we went to Sleep School for 5 nights as Mason would not settle at night and was waking multiple times throughout the night - we made no improvements.
He started to develop a cough around 10 month old, which just would not go away. The pediatrician reviewed him every few weeks and eventually we gave in and started a course of Broad spectrum antibiotics - 3 courses and no improvement she referred him to a respiratory specialist at the Children's Hospital. The specialist said he has asthma and x-rays showed scarring on his lungs and so he told us he has Chronic Bronchitis and to continue Antibiotics until the infection completely resolved, this was months and months of antibiotics.
A few months later his weight was dropping and blood tests showed he was anemic. He was put on iron supplements and high caloric drinks. I was told to give him cheese burgers and anything he would eat to help him gain weight - and that point he had dropped to around the 5th percentile. We took him to a child eating disorder specialist, this was very little help. He continued breastfeeding until 18 months and eating a limited diet.
At 18 months old he was not walking at all, not where he should be with speech and seemed to have very low muscle tone, his pediatrician diagnosed him with Failure to Thrive and Global delays, she referred him to Early Intervention. At this point he still had a barking ongoing cough, so she referred him to the children's for Cystic Fibrosis tests… Thankfully these were negative!
We noticed he had a Hydrocele and Hernia, so the Pediatrician referred us to yet another specialist, we kept monitoring it and at 3.5 years old he went under general anesthetic to have it corrected.
When Harry came into the world, naturally at 37 weeks Mason was almost 2 and very sick, and we were very drained and exhausted from spending the night in the Children's Emergency department with him. Mason had to wait a week to meet his new brother, and had just been accepted into Early Intervention where he would receive Speech Therapy, Physiotherapy, OT and some Psychology support. Early Intervention was such a blessing and support for us.
While we were feeling like we were finally getting some support for Mason, our new baby Harrison was not doing so well. He would cry constantly, and I mean constantly! I was absolutely beside myself and would call the private hospital where he was born almost every day begging for them to find space for us in the month baby unit. At 8 weeks old we got the call and were admitted for 6 nights.
They told me Harrison had colic and that I had postnatal depression…
Back home and Mason was making progress in Early Intervention, his language was finally catching up and he was starting to run and play more.
At 2yrs old, at his first dentist appointment, we were told his teeth were crumbling, this can be caused by antibiotics, something Mason had had plenty of, he was referred to a pediatric dentist and a few months later went under another general anesthetic to have 4 crowns applied to the affected molars.
At 3 years old he suddenly developed a stutter which was absolutely heart breaking! He would quite often rate a 9/10 and would take 30 seconds or so to complete 1 sentence, it was yet another blow for him. I believe that his brain/nervous system simply could not manage the strain for growing, healing, catching up on all his delays and manage to form sentences at the same time. He commenced Lipscombe therapy at Early Intervention where we would go every few days. Plus do the therapy at home daily.
At this point I had cut out processed foods and he was eating a mostly Paleo diet, I had removed dairy completely in the hope it would clear his eczema. For a short while it did, but after a few weeks it came back with a vengeance.
Mason, Harrison and myself all went to Sleep School again, this time a different one that promised to help with Harry's sleep issues as well as Masons food refusal - we made no improvements again...
Mason’s Early Intervention Key Worker/Speech Therapist had picked up that Harry was also now delayed in Speech and Gross Motor Skills at 18mths, like his older brother! They accepted him into the program and suggested a hearing test first. From here we found out that he was moderately deaf, then an overnight sleep study also showed he had severe obstructive sleep apnea caused by very large tonsil and adenoids… this would explain why I had not slept in almost 2 years!
It was recommended he have his tonsils and adenoids removed and grommets put in, I did not even consider another option I just agreed and the week after he turned two he had the operation.
Harry always had displayed behavioral problems, he was very rough with other children, and would constantly want to wrestle his big brother, who was weaker than him. When we had found out he was moderately deaf, I instantly put his behavior down to that, and thought that once he could hear properly he would calm down, and be a more chilled out, less violent child… I was wrong.
Around 2.5yrs old his therapists started to mention Sensory Processing Disorder, and possible ADHD type behaviors - I resisted a diagnosis and wanted to just keep working with the boys and their therapists hoping all the therapies would make a difference.
We were attending Early Intervention 1 -2 days a week, doing Mason's speech therapy for his stutter, gross motor therapies for both boys, behavioral type therapies, I was taping Harry’s feet as his muscle tone was so low his ankles would roll in, between the boy's Medical specialists and therapists we would have at least 2-3 appointments a week, I was doing everything possible at home to help Harry meet his sensory requires and needs… we were burnt out, it was just a constant onslaught of problems, appointment, therapies, behaviors, and the eczema was relentless! Mason had gone backwards and started to refuse food again! I was losing my mind!
Harry seemed to go downhill with his speech and behavior again, and a trip to his ENT revealed his grommets had fallen out, he went back to hospital for another general anesthetic and second set of grommets.
We also found out Harry had a peanut allergy and were put on a wait list with the allergy clinic at the Children’s Hospital, 3 years on the waiting list and I have given up on that idea...
Mason was having antihistamines every night to stop him scratching, he was on antibiotics, taking Iron and Vit D, fish oil, supermarket probiotics and I had tried every ‘Wonder/Miracle’ eczema cream or tonic that well-meaning people had sworn by…
I was a nurse before having the boys, and so had such a narrow, medical based view on these problems. I even did extra training in vaccinations! So it was simply how I viewed the health system… I never started to question these treatments or methods until they didn’t actual work or seemed to make things worse. I had started to research how food and lifestyle impact our health, and I am not talking about the food pyramid, calorie counting and avoiding the sun… I am talking about the paleo lifestyle and a holistic and natural approach to child rearing and life in general. I became fascinated with how much we are affected by what we put into our bodies and how these things are impacting us in ways that many of us can’t seem to notice or join the dots.
In 2015 I had starting work as P.A to Jo Whitton, of Quirky Cooking. I was helping her put together her cooking program designed for people doing the GAPS protocol. I was transcribing the videos, formatting and doing lots of admin type work. I was seeing lots of emails come in from people whose journeys with their children were so familiar and close to home! I had considered GAPS, but was put off by friends telling me it would be “too hard on the kids and too much cooking etc”
So, I continued with what we were doing, and just kept going with healthy whole food/paleo type eating… However, it’s easy to say that but when your child refuses food and is so underweight it’s just not so easy to get broths, fats and veggies in. When all your child wants to eat is popcorn, rice crackers and fruit, and when they are so ill and underweight you JUST LET THEM EAT WHATEVER YOU CAN GET INTO THEM! I know there would be so many parents who understand this feeling, the feeling of desperation, your child is so sickly thin, so anything you can get into them is a win. When I read comments from members of the GAPS cooking program say things like “they won’t starve themselves, they will eat the soups and veggies after a few days” I just could not believe it, “my Mason would never eat those foods, I have tried those foods and he will only eat finger foods” I would say “…he’s so picky, GAPS won’t work for us.”
Then out of the blue Mason developed quite severe anxiety. He would burst into tears at the drop of a hat, he would hysterically cry if I got out of the car to check the letterbox, he was so concerned about something happening to me, always asking if I will die, if I am going to leave him or if something bad was going to happen to me. It was very overwhelming for us because I just couldn’t understand why all of a sudden, he was a crying, fearful mess. He started having terrible night terrors that would last 30 or more minutes, he would wake multiple times and be in our bed every night.
I remember very clearly the day I decided we MUST start GAPS, I had reached my limit, I was broken, and I didn’t know what was possibly left to try, I decided we will start the kids on GAPS and we WILL heal them and get over these seemly impossible hurdles.
After consulting with Elyse Commerford, an amazing GASPS Practitioner, I decided we would do a few weeks on stages 4-3 to ease the boys in, since their diets were already dairy free and mostly grain and sugar free already I figured this will be enough of a ween into it. We started stage 1 in October 2016 - Mason was in 4 yr old Kinder. The first few days were hard. Mason was very tired and stayed home from Kinder that week. He lay exhausted on the couch, vomiting on and off for the first 2 days. He hated baths, after his traumatic experiences with his eczema, so I put the television in the bathroom, so he would have long detox baths. Harry managed a lot easier than Mason.
I asked Mary Kelly, to be our coach, and support us via email for the first few weeks of commencing intro. I remember asking her what to do if they do not eat the broths and soups, what will happen, because surely, they will starve?!
Day 3, they were begging for Lamb broth, even asking to take cups of it to bed with them. They were eating more food in 1 day than they would have eaten in a whole week pre GAPS, and it was all real, whole, nourishing foods, meats, broths, veggies, fats - I was blown away and completely over the moon, what a feeling it was to finally feel like I was winning at this parenting gig!
Week 2 and Mason struggled with constipation, and began to lose weight, he did not have weight to spare! His ribs and hips were poking out and I began to panic, that motherly instinct to shelter and protect my children at all costs was a very hard feeling to ignore. I hated seeing Mason even skinnier than usual, I was so protective of him. I had to put all my trust in the food and the innate intelligence of his body to heal and nourish itself, and I had to keep providing these things for him. We persevered and continued. In a few weeks’ time I noticed the change, he started to gain weight, his eyes were brighter, he was less anxious, he had more energy. YES!
Despite the eczema not improving, these other changes were all we needed to be spurred on.
Harry was thriving on GAPS, he craved the food and would eat anything in front of him. His behavior slowly started to improve very slightly, but at that point I couldn’t care less about his behaviors, I was just so thrilled and fulfilled seeing my boys eat such nourishing, healing foods with such enjoyment!
It wasn’t until about 7 months into GAPS that I saw an improvement in Masons eczema. Once it did finally go away we were over the moon! It was such a feeling of accomplishment! The introduction of nuts flared it up again, but that’s OK, at least we could see why it came back and felt in control for the first time ever.
It’s now 12mths into GAPS, the boys are still stage 5, and we have slowly introduced some dairy. They are still nut free, and I plan to keep it that way for now.
I am confident we all have the MTHFR mutation, Harry and I both have a tongue and lip tie, mason has a concave chest and both boys had hydroceles, and seem to struggle with detox and waking at night.
Yes, we are a year in, but with so many challenges and obstacles to face I feel like slow and steady is the best path for us. We have slowly started to implement Mary's parasite protocol too, and plan to make that a focus for the next few months now that we have achieved some serious healing.
Over the last two years we have implemented many changes to our family and lifestyle, many are GAPS recommendations and some just things that make sense to me. Some examples are;
Good quality filtered water for drinking and showering
Removing the microwave
Removing toxic cookware and just using cast iron
Getting outside in the sun everyday
Barefoot when possible outside, and being in nature
Removing all chemicals from the home including cleaning and toiletries
Starting a veggie garden and having chooks
Not worrying about an eating schedule - breakfast/lunch/dinner, and instead eating when hungry.
During our journey, I did feel that there is little, if any, support for the GAPs kids themselves. Besides us to teach and support them on GAPS, my boys don’t have any friends doing GAPS, and no one else who seems to get them. Although Mason and Harry understand why they do GAPS, it is hard at times as they can feel quite excluded or different. I felt that if I can provide a tool for my boys, and other children doing GAPS that the process would be easier for them. I wrote the book ‘I’m a GAPS Kid’ with Masons help one day, and within a few months it was published! We also started a YouTube channel for other GAPS Kids to watch, so they can see that there are kids just like them, who thrive and enjoy GAPS. Hopefully this will make the tough times a little easier.
So, here we are… 1 year into GAPS Intro, Mason is almost eczema free, doing well in school, and at a healthy weight and height. Harry is now in the 90th percentile for height and weight! I am holding out hope for that we can remove any diagnosis of SPD and other behaviors - but I understand that these things take time, and I am setting them up for life. They have been sick just once in the last 12 months, and that was a virus that lasted a week…. That is AMAZING!
If anything I have mentioned resonates with you, and your children’s story I strongly suggest you consider GAPS and look at food to heal your kids. We all have the power and strength as parents to heal our children and teach them the power of food. This is just the beginning for them, I have so much trust and hope that we are on the path to a healthy and empowered life for them and the generations following them.
xx Emma has kindly offered the readers of Good Mood Food a discount of 10% on her delightful children's book, 'I'm a GAPS Kid'. It is a wonderful and rare resource to help our healing little ones to feel that they are not alone, and that they are brave! You can order a copy of 'I'm a GAPS kid' here: www.imagapskid.com , use the coupon GOODMOODFOOD10 at checkout to get your discount.