Dietary Intervention – The GAPs Diet

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I have wanted to write this post for a very long time. But every time I even thought about it, I developed terrible writer’s block. A new experience for me. Writing normally comes easily to me. Why such a blockage? Partly because this is a complex topic. It really warrants an entire book. No single blog post will do it justice. But primarily, honestly…fear. Fear of being judged, fear of reprisal, fear of offending people. But today, finally, I choose to go ahead in the face of my fear. Why? Because I believe in my heart that to fail to write about this topic would be a disservice to those who may find something worthwhile in here. (And then, in one of life’s great ironies, just as I had finally written the first few paragraphs of this post my computer crashed..I hadn’t saved the post, and there was no “recovered document” to be found…haha..the universe is testing my resolve!)

So here we go, let’s talk about diet. I know this is a highly controversial topic in the special needs community. I know there are children out there who are PEG fed, children who will “only eat white foods”, children who can’t tolerate certain textures due to sensory issues, children who gag and regurgitate, children who can’t chew at all. Getting any sort of nutrients into these children can be a battle. And parents of children with special needs are often so overwhelmed with other medical issues, therapies etc that the idea of making dietary changes can seem frightening if not impossible. I do not judge anyone for the choices they make in regards to their children. I believe all parents will ultimately do what they believe is in the best interests of their child. But dietary intervention was life altering for Sophie and our family, so I choose to share our story. I am not a dietitian, nor a doctor. I am not making recommendations on what is appropriate for anyone else’s child, or suggesting that worked for us will work for anyone else. I am merely sharing our story. You may find something in here that resonates with you. You may not.

I have written in earlier posts about what an unhappy baby Sophie was. Refluxy, colicky, crying in pain, waking repeatedly throughout the night. Her bowels were obviously not working well, as she was producing up to 15 stinky runny bowel movements per day. She had bouts of terrible nappy rash. She had loads of sensory issues. She was failing to thrive. She was beside herself, and so were we.

We suspected from early on that she was intolerant of dairy. Removing dairy from my diet while I was breastfeeding helped somewhat, for a little while. But the bowel issues and recurrent night wakings, with Sophie screaming out in pain, continued. I was going slowly insane with the stress and lack of sleep.

Then, when Sophie was about 12 months old, an old and dear friend of mine, Maree Symons (who happens to be a qualified naturopath), spoke to me about the GAPs (Gut and Psychology Syndrome) diet. I listened, but it all sounded a bit outlandish. And to be honest I was resistant to hearing what she had to say, as it seemed like a lot of hard work, and I was already at breaking point. She suggested I read the book. I ignored her advice for a few weeks, then ordered the book and read it. And I cried a river of tears. Why? Because it made sense. Because I knew in my heart that this could potentially really help my daughter. And because I felt it would be an impossible task. The diet sounded like a lot of hard work, and sleep deprivation and hard work are not a good combination. So for three long months I carried on, tucking the GAPs diet into a corner of my brain where it only occasionally came out to taunt me. But I couldn’t ignore that nagging voice forever.

Finally, when Sophie was 15 months old, I decided to bite the bullet and give this GAPs thing a go. What changed? A couple of things. Firstly, Maree told me that even though it might seem like life would be more complicated, the fact that I would need to plan ahead could actually make things easier on a day to day basis – being organized can sometimes decrease stress. That made sense to me. Secondly, our bio-medical doctor suggested that we make a six week commitment to GAPs in the first instance. He said that if I saw no changes at all during that time, perhaps GAPs wasn’t the answer. And if I did see changes, then that would be the impetus I needed to keep going. The GAPs diet is supposed to be adhered to for one to two years. At a time when getting through a single day was a challenge, making a one to two year commitment seemed outrageous. But six weeks – that I could deal with. And thirdly – I had decided that no matter how hard GAPs was, it couldn’t possibly be as hard as continuing on the path we were on. I couldn’t bear to keep having my child waking in pain throughout the night, couldn’t bear the thought of forever struggling to help her gain weight, couldn’t bear the thought of more nappy rashes, and continuing multiple nappy changes throughout the day. Something had to change. It was time.

So what exactly is the GAPs diet? Well I’m not the expert, and this isn’t the place to go into all the details. Some information can be found on http://www.gapsdiet.com/ . And all the details (including an explanation of the biochemistry behind the diet) are in the book (Gut & Psychology Syndrome, by Dr. Campbell-McBride). Essentially, a basic summary is that GAPs is a diet designed to help repair the gut by “healing and sealing” the gut wall and repopulating the gut with healthy gut flora. It is not a diet that you have to stick to for life. It is a diet that aims to fix the underlying digestion issues, rather than simply focusing on removing offending substances for a lifetime. The premise of the diet is that gut function and brain function are intricately linked. If your gut is not working properly, nutrients can’t be absorbed properly, and substances that shouldn’t be circulating in our systems can leak through the gut walls causing all sorts of health problems. It is a diet that is purported to help ameliorate many of the symptoms of autism, help resolve certain psychological disorders and some auto-immune conditions. It involves removing all starchy foods (including all grains, potato, sweet potato, corn and most beans/legumes), reducing fruit and other sugars, removing all additives, preservatives, colourings, flavourings, and eating organic, unprocessed ‘real’ food. GAPs also involves introducing foods such as meat and bone broths (to soothe and heal the gut lining), live fermented foods (to improve gut flora) and healthy oils (for calories and energy). The GAPs diet also incorporates fish oil and cod liver oil. Some people may need to take digestive enzymes or other supplements while on the diet. But primarily, GAPs is about eating real food, for real healing. GAPs also has protocols for children who would normally be completely breast or bottle fed. And GAPs can be done with children who are tube fed (by using a blenderised diet).

Well you can imagine how some people reacted when I suggested we were going to go down this path..What??? You aren’t going to give your child bread? Or rice? Or pasta? No carbs? How will she gain weight/ she is already underweight? Are you crazy? Isn’t that irresponsible? What has your GP said? Has your gastroenterologist approved? Well no, no-one in the western medical profession had given their approval. But we had exhausted all of their advice, and none of it helped. We were going to give this thing a shot.

My mother was one of many people who wasn’t very happy when I informed her of what we were going to do. But Sophie was staying at their house for one night each week, so they had to be on board if this was going to work. I was adamant that we were going to give this a go, and, somewhat reluctantly, my mother (to her credit) agreed to go along with it.

There was just one minor issue. I wasn’t intending to adhere to the diet in full. For those who have read previous posts you will see what a battle we had with breast and bottle feeding. We had finally managed to get Sophie to drink from a sippy cup, and she had finally started to drink rice milk. And I was terrified of giving that up. We tried her on almond milk and she flat out refused. She was intolerant of soy, and it wasn’t “GAPs legal” in any case. So I made a decision to keep her on rice milk (big mistake, as it turned out, but we all make mistakes). We also weren’t in a financial position to buy all organic produce, so I had to pick and choose what foods were the “least risky’ (in terms of pesticides etc), and which organic foods we would be able to afford. I figured that making some compromises while adhering to the rest of the protocol would be better than doing nothing at all.

So we launched into “almost GAPs”. The stove was on almost constantly, with a pot of bubbling stock on the top. I was tripping around all over town to source organic meats, sausages without starches or preservatives, cod liver oil, organic chicken frames. I will not lie. It was not easy. But then the miracles started to happen. Within less than 10 days Sophie’s bowel movements were substantially improved. Sophie was waking less. My mother noticed, and all of a sudden was much more supportive. She started (and continues to this day) to make stock, and cook up big bunches of veggies and other GAPs friendly food for Sophie. As time passed, Sophie’s sensory issues started to diminish. She was gaining weight. She looked healthier. Her overall development improved (probably as a result of improved sleep, and being in less pain). GAPs was working. After about four months, Sophie had completely normal bowel movements. And she was waking only two to three times a night. I figured that was the best we would ever get in terms of sleep. I thought that perhaps her sleep cycles were so disturbed after such a long period of poor sleep, that she would always be a night waker. I was wrong. When I finally had the courage to go ‘full GAPs”, and removed the rice milk, she started sleeping through the night. All night. Every night. Only four days after we stopped giving her the rice milk. For us, GAPs improved Sophie’s life (and ours!) beyond our wildest dreams.

We are not the “model GAPs family”. We followed full GAPs for only six months. It is supposed to be followed for one to two years. But Sophie was doing so well, that we decided to slowly introduce some non GAPs foods. Over the course of the next year we introduced quinoa, buckwheat, potato and sweet potato. Her system tolerated all of these foods. Eventually she was also able to tolerate rice again (perhaps two years after we removed it from her diet). She now occasionally eats corn. She still can’t tolerate dairy or soy, and we chose not to give her gluten. Perhaps if we had done GAPs for two years, her gut could tolerate dairy. Perhaps not. There is dairy intolerance on both sides of our family, and in reality humans are the only species that continue to eat/drink milk products after infancy. (GAPs actually does allow some dairy – but we did GAPs without dairy as Sophie was intolerant). Being dairy free is sometimes annoying, but something I am happy to live with.

Nowadays, Sophie still eats primarily GAPs type meals. With occasional starches and some other rare exceptions. For example we allow the odd artificial colouring or flavoring if at a child’s birthday party or other special occasion (though not any from the “dangerous food additives’ list http://www.traditionaloven.com/articles/wp-content/uploads/list_of_food_additives.pdf ). She is well nourished and eats just about anything we put in front of her.

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For us, changing Sophie’s diet was a resounding success. One of my biggest struggles and heartaches these days is seeing children who are suffering with bowel problems, reflux, colic, sleep problems or sensory issues, and wondering if their lives could be changed with dietary intervention. Hearing of children who could only eat three foods prior to GAPs, and now have a varied diet, and wondering if these children could be helped through GAPs.. Hearing of children who would only eat “white foods”, and who now eat all colours of the rainbow, and wishing that miracle for all parents who have children with ingrained food preferences. I find myself wanting to tell the world, but often keep quiet for fear of giving ‘unwanted advice’ or upsetting parents who are already over- stressed. And who is to say whether GAPs would work for them anyway? But I know it worked for us.

Please note that many children (and adults) take much longer to derive significant benefits from GAPs. We were lucky that Sophie responded so quickly. So if you decide to go down this path, and aren’t getting immediate results, please don’t be disheartened. There are plenty of support groups out there including GAPS Kids and GAPS Pantry on Facebook. There are many different stories, but almost every story is a success story, in that improvements are made. Sometimes miraculous ones.

Hospital Stay and Discharge

It has taken me a long time to write this post. I debated whether it was necessary/useful. I questioned myself about whether I was just having a whinge, looking for sympathy and being a victim…because I know so many Kabuki families had such a hard start with their kids in terms of medical complications. And so our “hard start” seems like nothing in comparison. This post has also been a while in the making as it was a difficult post to write. I kept getting “writers’ block”, as it was bringing up lots of emotions from that time. In the end I decided to persevere and post, as it provides some background about the state I was in when I started my journey into motherhood.

In some ways we were very lucky, in that Sophie was not born with some of the major medical issues that children with Kabuki can have…such as heart defects, kidney problems, or problems with aspirating fluids. That meant we avoided the trauma of having our child in the neonatal intensive care unit (NICU). While that was indeed a blessing, it also meant that Sophie’s issues were not immediately apparent to the doctors in hospital. It was to take us 20 months of battling the system to obtain our Kabuki diagnosis, and another year to obtain our Aspergers diagnosis…but I’ll save that story for another post.

Despite avoiding the serious medical complications, my introduction to motherhood was not an easy ride.

The first day after Sophie’s birth was a blur. I spent most of it asleep. Or, rather, unconscious.

The first night was anything but peaceful. We had been given permission to remain in the birthing suite so we could have a room to ourselves. The midwives felt that Sophie and I needed some privacy and space to recuperate overnight after the difficult birth. Unfortunately there was a change of shift, bringing a different midwife with a different opinion. This new midwife woke me and demanded to know when the baby had been fed. I told her that Sophie had been fed about 5 hours previously. I told her the doctors had informed me that Sophie was exhausted from the birth, and that it was feasible that she might sleep for up to 10 hours without another feed. The midwife told me in no uncertain terms that this was “absolute rubbish”. To my horror and disbelief she literally lifted my top, pulled hard and sharp on my nipple, and yelled that if I didn’t wake “the baby” to feed ‘”it”, she would express my milk and feed it to “the baby” in a bottle. I simply couldn’t believe it – this was the sort of treatment you read about from the 1960s, not something that really happens in this day and age.

She then proceeded to wake Sophie, and very roughly change her clothes, pushing and pulling her arms and legs, and throwing her about roughly. Poor Sophie started screaming hysterically. A high pitched wail of what sounded like sheer terror.

There was nothing I could physically do to stop this woman’s assault on my body or my baby. I still had the epidural in place and couldn’t walk. I was pinned to the bed. I felt disempowered, humiliated, and enraged at the way she was treating us. I yelled at her to please stop, burst into horrified tears. She didn’t stop, just kept yanking Sophie’s arms and legs, then virtually threw her at me before leaving the room in disgust. She returned just minutes later with an orderly in tow, and I was transferred into a shared ward. So much for some peace and privacy. I remember calling my husband in hysterics. I can’t remember any of the conversation.

The first night passed in a blur of exhaustion, intermingled with feelings of helplessness and pain. Helplessness because, paralysed from the waist down, I couldn’t even get out of bed to comfort Sophie each time she woke screaming. No little kitten mewls now. Just high pitched screams. I had to push the little red button and wait for the nurses to come, in their own time, to deliver my baby to my breast. Sophie didn’t latch very well, and didn’t feed much at any one time.  She kept collapsing into an exhausted sleep, only to wake again screaming within an hour or so. This went on all night. She was in discomfort from the very beginning.

I was experiencing pain in my incision each time I coughed. Which was still quite frequently. The nurses kept enquiring about my pain levels. I told them it was about a 4 when I wasn’t coughing, and an 8 when I was coughing. They looked at me like I was somewhat crazy, and I think they categorised me into the “difficult patient” category. “How could she be having pain? “ I could just see them thinking it. “She can’t be in pain – she has a damn epidural in!” Despite me telling them of my pain, no-one bothered to check my epidural site. And of course I was given no oral pain relief. I shouldn’t have needed it, as I had an epidural in place. It wasn’t until the next day, when they came to remove the epidural, that they discovered I was stuck to the bed with epidural fluid. A significant amount of the anesthetic had leaked onto the bed, not into my spine. I did get a very apologetic visit from the pain management team in a big hurry. But no apology from the various overnight nurses who had been virtually rolling their eyes when I reported my pain to them…only down-turned eyes and avoidance.

The second day was not much better. The only upside was that the nurses decided that I should be in a private room after all. I think a combination of my obvious ongoing distress, plus an obviously distressed and screaming baby helped them to make this decision.

That afternoon Sophie were unresponsive and pale when I was trying to feed her. I could not for the life of me wake her. She was floppy in my arms and completely non-responsive. I hobbled down the hallway to the nurses station yelling out “I can’t wake my baby I can’t wake my baby”. I was sternly reprimanded for carrying her down the hallway as it was “against hospital policy”. WTF? I’m scared that my baby might be unconscious, and I’m supposed to ring the bell and wait for a nurse to come? I don’t think so. This is my BABY we are talking about here. We had to strip her completely and wash her with a cold cloth before she could be roused. Then I went to change her nappy for the first time, and asked if I could be shown how. The nurse looked at me like I was a complete idiot, and made some off hand derogatory comment that I can’t remember. Perhaps it was the thousandth nappy she had changed, but I had never held a newborn before, never changed a nappy, I wanted to be sure I would do it correctly. I didn’t realize I would be expected to know how to do this.

That evening Sophie became jaundiced. They took her and put her in a little crib with the bili lights. She was stripped down to a nappy, and blindfolded. She hated it. She hated it so much that she just screamed and screamed and screamed. After several hours of listening to her screaming at my bedside, with me being able to do nothing to help, I begged the nurses to take her to the nursery so I could get some sleep. I just wanted the screaming to stop. After a couple of hours with no sleep, my guilt at abandoning her overcame me and I begged them to bring her back. She was still crying pitifully. It was so terribly sad. Here she was, brand new to the world, alone, blindfolded, stripped, flayed out, not being cuddled, not being held. The nurses never suggested to me that I could hold her. After a while I somehow figured out that I could hold her in my lap and move the light around so it would shine on her. She stopped screaming. I wish I had figured this out hours earlier. I felt like a bad mother for letting her scream so pitifully in that bili light crib for so many hours. Alone and helpless. And I felt angry that the nurses had not told me it could be different.

I think it was about then that I rang Frank in hysterical tears again. I think my underlying certainty that something was “wrong” with Sophie, combined with my grief over the birth process, amplified every little problem that happened during our hospital stay. I was distressed to the core and couldn’t cope with anything going wrong. Being a public hospital, husbands were not allowed to stay the night. But by now Frank was so damn sick of the treatment we’d been getting, and so upset with my distress, that he demanded to speak to the hospital administrator. It was about 3am but somehow the administrator was tracked down and Frank was given permission to come and sleep on the floor beside me. Thank god for that. Once Frank was there I felt safe. I felt like someone was on my side. I felt like the nurses wouldn’t dare mistreat me with him there. I felt like we would get through the next horrible few days until we could get the hell out of there and go home.

I received conflicting advice from every midwife in regards to how to go about feeding, how often to feed, how to get Sophie to latch. By the end of the stay I felt I couldn’t trust my mother’s instincts. I didn’t feel I could even judge how often to feed her. Should I wake her to feed ? Or leave her to sleep? The nurses and midwives insisted I should wake her every 3 hours, as she had been jaundiced and needed the fluids. The doula insisted I should let her sleep and feed when she wanted. Sophie wasn’t much help, as, unlike “neurotypical” babies, she only had one cry. She didn’t have different tones and noises for “hungry”, “cold”, tired”, “lonely” – just the one very high pitched wail.

By the next day, after only about 10 hours sleep in four days, I was starting to lose my grip. The doula suggested I should eat some placenta (which she had saved and frozen, as I intended to plant it under a tree). I had always thought that eating your placenta was something that crazy hippies did (I have a bit of the hippie in me, but not that much!). But at that point I would have eaten my right arm if I thought it would give me some respite. The doula dutifully shaved off some small pieces and placed them inside some avocado, suggesting I pretend it was sushi. I couldn’t bear the thought, but I was desperate. I swilled each mouthful down with a large swig of water. No chewing. Within 45 minutes I was relaxed, pleasantly light headed and very sleepy. Shortly after, I fell into my first peaceful sleep for days. I was a placenta eating convert!

During this whole period, I was dealing with growing concerns about the well-being of my child. From the day after Sophie was born I knew deep in my mother’s heart that something was wrong. To begin with it was something I couldn’t explain – I just thought she didn’t look quite right, and she didn’t feel quite right. I distinctly remember my family passing her around the room, and me looking on and thinking “there is something wrong with my baby”. The first icy twinges of fear closed around my heart. My fears were put down to an overreaction, as I was distraught about the birth and subsequent proceedings, and not coping well. But as the days passed I began to notice some physical differences. She didn’t have a grasp reflex, and no rooting reflex. She seemed floppy, and was having trouble breastfeeding. The doctors and midwives told me this was due to the drugs I had been given during the late part of my labour and the c-section. She had a simian crease, a sacral dimple, an umbilical hernia, and slight pectus excavatum (like a small “dint” in the center of her chest). One of her pupils looked bigger than the other. None of these things were noticed by the doctors. When I pointed them out, they brushed it off, and told me it wasn’t unusual for kids to have a few minor physical anomalies. Months later, when desperately searching for answers on the Internet, I was to discover that about 3% of the”normal’ population have one minor congenital anomaly, about 1% have two minor anomalies, and less than 1% have three or more. And that any baby with three or more minor anomalies should be considered as potentially having a genetic disorder…I’m not sure where those doctors went to medical school, but they must have missed out on that particular lecture.

All in all, my time in hospital was a pretty unhappy time. I just wanted to get out of there and back to the sanctuary of our home, where I thought things would improve. So three days after my c- section I discharged myself. I had imagined going home elated, thrilled with my newborn and full of the lovely bonding hormones of early motherhood. Instead I went home exhausted, in pain and feeling unheard and uneasy.   Pictures do lie!!! Or maybe not. There is a smile on my face, but you can possibly see the tiredness in my eyes….

 

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NEXT POST…FEEDING, SLEEPING, AND SEARCHING FOR ANSWERS