First let me start by saying that I am not a doctor or a certified medial professional. This story is my own experience and the suggestions are just that, a suggestion of what worked for us. Please check with your doctor before taking any advice stated here.
My son Jaden was born a healthy cubby smiley baby boy. He was our first child and we were totally clueless as to what to expect. The first 12 weeks of his life were ‘normal’ by our standards. He slept like a newborn, ate like a newborn and well…acted like a newborn. But as weeks passed and all my friends children began sleeping well and fussing less I started to feel insecure about our little guy. His sleeping pattern went from normal to bad to just terrible. At 9 months he was still waking every 2 hours and when he woke he didn’t just fall back asleep after nursing or being soothed..he screamed… for hours! Being a first time mom I just figured I got a bad sleeper. It wasn’t until after having my second child that I realized how abnormal his behaviour was. Now after our third child I realize that we were crazy to not have seen this as abnormal. Don’t get me wrong I am not saying all bad sleepers have health issues but for us it was the first of many signs he began to display.
Our biggest sign was what started as a simple harmless looking’ rash’ on his bum that we
rash on his bum
chalked up to as a diaper rash. This rash was mild but persisted despite our best efforts. So my son kept growing and the rash, sleeplessness and irritability grew along with him.
So fast forward to after my second son was born and Jaden was 3 years old. We decided to take a trip to Brazil so that my family could meet our second son Avery. This trip ended up being a very big turning point in our family’s health and wellbeing. At this point Jaden’s behaviour was out of control. He would go from being the very best, calmest and well spoken little boy to a total ‘monster’ (for lack of a better word). We dismissed this behaviour for a long time as normal toddler temper tantrums, the terrible twos, then threes, but when compared to other children they were next level. Now I know what your thinking, don’t compare right, but how could we not when each outburst lasted hours with full on rage, self hitting and the lose of any forms of reason. Talking to him was out of the question and nothing we did could calm him down, even if we gave in to whatever crazy demands he had. Most of the time we had to let it ride out and he would eventually pass out from all the effort. One of the symptoms we missed at this time was that my son would get super flush and extremely hot right before these tantrums, in fact when my son was a baby he would usual get so hot at night that he would wake up dripping sweat (more on this later).
Looking back on this I can honestly say that this was a very hard, dark time in our lives. It put a strain on our relationship as a family and it had us all on edge and walking on egg shells around my son. I figured it was just a matter of time before he would be labelled as on the spectrum or as having a behavioural disorder. I blamed myself, I thought I was ‘breaking’ my son. Surely this was my fault, I wasn’t tough enough, I wasn’t strong enough. My parenting style was much to gentle, we are to attached, me and my husband weren’t united enough, I did not sleep train, I let him nurse on command, you name it I thought it as a reason behind my son’t behaviour. At my weakest moment and at the hight of my sleep exhaustion when even caved to sleep training. We tried all kinds of methods and at my lowest moment I let my son cry for 3 hours one night. But ultimately that has no effect on my son and he continued, even at 3, to wake constantly during the night. OK so back to our Brazil trip…
One day while we were on the beach my mom saw my son’s ‘diaper rash’ and almost freaked out. She demanded that this rash was not normal and needed to be looked at by a doctor. She literally spent the entire trip telling me this. So when we got back to Canada I made an appointment with his paediatrician. And that is when the LONG FRUSTRATING journey to heal my son began…..
Until that moment I had never addressed my son’s rash, irritability and sleeplessness as a connected group of symptoms for an underlying problem . We had seen many health care practitioners over his 3 years of life to address his symptoms individuality but never as a whole. For his sleep and irritability we tried homeopathic medicine, osteopathy, sleep training and even spiritual cleansing… but nothing helped. It was my mother’s comments to look at my son’s skin that spared this transition for us. Again when we addressed my son’t skin issue individually we got no where. The doctors and 5 different dermatologists confirmed he just had eczema.. But this was so frustrating because just didn’t seem like the full picture to me.Our luck was that my son was very vocal and began telling us that he felt like his skin was on fire and that he was so so itchy all the time. This set off a light switch in my head because I thought, if he is itchy wouldn’t that make him irritable! As a researcher I began looking into these symptoms as a whole.
Yes you read that right my son was pooping white stools, which I now know is a sign of gut damage and malabsorption. That to me was the symptoms that made the most difference in my research. I read about leaky gut and how the skin, gut and brain connections are very strong.
Armed with all this information and knowledge was excited to share this with his doctor and for an allergy test to be performed on my son. Let’s just say she was not keen to do this. I literally had to demand the referral and refused to leave without one. But boy am I glad I did because our IgE skin prick test revealed he was allergic to all 20..yes 20 of the things he tested him for. The allergist looked at me, handed me a sheet of paper with basic instructions and said “good luck, come back in 2 years”. Let’s just say I left that appointment in tears and totally lost as to what the hell I was suppose to feed my son!!! In my opinion the health care we received at this point in our recovery disappointing, how can they send a mother away from an appointment like that with NO SUPPORT!! NADA!! No referral to a dietician, no further testing to see what was going on… nothing!
Once again my strength as a scientist and stubbornness were the only reason we came out of this. I knew that this was not normal and that something else was goining on. No one can be allergic to lettuce right! So I asked to be seen by a paediatric GI..which again was met with hesitation. I eventually did get a referral but with a 13 month wait because, even though my son was pooing blood at this point, he was not considered high priority! So while we waited I knew I could do more for him. So I began to clean up his diet.
But I was not seeing such drastic results and I was once again left discouraged. Until.. enter my mom, for the second time…
With our Brazilian background we understand parasites and amoebas all to well, so my mom suggested doing a fecal test on my son just to be sure. This was the hardest test to get my doctor to perform, despite all the symptoms my son was experiencing. But my persistence paid off and we discovered that my son had a very nasty case of dientamoeba fragilis (if anyone is interested in how we successfully treated this let me know in the comments), yuck right! My doctor prescribed a 10 day antibiotic treatment for the entire family just to be sure (even though our tests were negative). After a unsuccessful round of antibiotics we were referred to a very highly recommended and well known paediatric contagious diseases expert. She informed me that the only drugs that would kill this amoeba is very strong, causes neurological issues and is banned in Canada…. we would have to live with this infection… wait what!! Ya you read that right those were her word. But that was not good enough for me. So back to the literature I went reading countless articles on dientamoeba. Unfortunately there is not much research on this type of ameoba but the few that did exist reported that we were using the right antibiotic (finally one thing going our way) but also that dientamoeba was very fragile and usually coexisted with pinworms, using their eggs to infect the host. Despite my son having NO symptoms of pinworms we tested him anyways…and guess what, he had pinworms. So we did a pinworm treatment followed by another round of antibiotics and I can happily report he is amoeba, and pinworm free…YAY right, well not so fast…
So now that the infection was gone I was left with a child with even more GI damage due to the rounds of heavy antibiotics. His symptoms and behavioural outburst were still super bad despite us being on an elimination diet. All the research I did at this point told me that the gut takes a LONG time to heal, so we had to be patient. I was not yet vegan but I tried very hard to clean up my sons diet. Gluten, dairy, rice, fish, citrus, nightshades, and any form of sugar or food from a box was OUT! Easy right… ya no, it was the hardest dietary and cooking time of my life. My husband and I were working full time, I was finishing up my PhD, we just had my second son and I had to make everything my son ate from scratch. I made a lot of disgusting food back then and spent was to long on recipes and overthinking meals.
But slowly I learned what recipes were quick to make, what to batch make and what was easy to digest and promoted gut healing by being anti-inflammatory. It was a difficult stage but as the week passed his skin cleared, then his tummy pains stopped, his stool became the typical brown color and his nose stopped bleeding. But the biggest transformation, the most rewarding outcome was that we got my son back. The bubbly, calm, well spoken and just pleasant little man was back in our lives. Sure he still has the normal tantrums 6 year old have, he doesn’t listen all the time and throws typical fits but that’s the thing..they are typical, normal child behaviour. He no longer feels itchy and irritated and I see a happy healthy life in his future.
Two years after we discovered all his allergies we can happily report that my son can eat everything that was on his NO list except gluten. The power we have to heal our bodies is amazing. Don’t underestimate yourself but also don’t settle against your instincts. I know this wont be true for everyone but I think learning to listen and respect your body takes time, patience and practise. If you get that right you are well on your way to heath and happiness. My son will likely never be able to eat gluten but we have come a long long way from where we started and to me that is a success story.
1.BE PATIENT: the gut can take up to a year to heal depending on the damage. For us it was about 2 years for a FULL recovery.
2 EAT SIMPLY: You dont have to go to go to such lengths (like I did) to make everything from scratch and go above and beyond with what you make (Looking back I think that was a mistake). The key is to just eat simply, to make sure you are eating WHOLE foods! Be aware of ‘gluten free’ items at the store. If it isn’t naturally gluten free it will have a LOT of junk (which are gut irritants) . This junk will not help your gut heal. Give the body time before introducing these items or better yet skip this stuff!
3. EAT WHOLE FOODS: This point is an extension of the one above. In order to eat simply and allow your body to heal itself the biggest thing I can recommend is to eat a WHOLE FOOD diet, ideally plant based. What this means is that if it comes in a package skip it. This is the easiest most effect way to eliminate any food that will irritate or cause further damage to your gut. If you are not going plant based then at least minimize gluten, dairy (I would cut this one for sure) and meat!
4. BE TRANSPARENT: be open and honest with your child. My son was 3 when we discovered his allergies so he knew very well what pizza, cake and candy bars were. So we were very open and honest as to why we were cutting them out. We also at one point let him eat regular pizza and told him to pay attention to how he felt. He realized quickly why we were cutting it out. Let your child feel the emotions of having a diet change…it sucked for my son! But we taught him to to listen to his body and respect what his body was trying to tell him. After 2 years my son is very aware of his body, he respects it and he listens to it…which I think is amazing, the silver lining of this entire process!
5. DONT DWELL: DO not dwell or make allergies a big deal. The worst thing you can do is to let your child see that you feel bad for them. They will pick up on your emotional cues.