I thought it would be good to share a little of my background, through our journey and the experiences I have had nursing my two little boys over the last 6 years.
I married my lovely husband in 2011, shortly after we conceived our first child. When our eldest, G, was born we entered a whirlwind of experiences.
We had a prodromal (start/stop) labour, we had one exam, which stalled labour and traumatised him and me. Hours later it kicked in again, waters broke, his amniotic fluid had meconium in it. From that and monitoring, refusing further exams, having a midwife try to manipulate me into exams threatening the necessity of a c-section, it was an extremely stressful experience.
To me breastfeeding was normal, it wasn’t a question of “if” I breastfed, it was “when” I breastfed, which didn’t really prepare me for his utter breast refusal from birth. Spending the first week praying he would latch on, completely exhausted, working on no sleep, and a screaming baby who wouldn’t nurse and wouldn’t sleep because they were so hungry.
Then on day 4, my milk came in! Hallelujah!
Even though he wouldn’t nurse, we went and bought a pump! Then started the around the clock process of expressing, cup feeding, expressing, cup feeding. He went from dropping 9% in 4 days, to regaining it all in the following 3!
We trialled nipple shields!! What a relief! He started nursing through them like a gem! He was still gaining beautifully. Unfortunately they can impair milk extraction, meaning I encountered mastitis for the first time. Not knowing of the more natural treatments at that point, we had our first load of antibiotics. Shortly followed by someone suggesting we try Soya Lecithin to avoid reoccurring mastitis, which really helped immensely in the following weeks that we exclusively used shields.
When he was 6 weeks he finally latched on of his own accord!! It was a completely unexpected moment. Having persisted at offering the breast regularly he never took it when offered, then one day laying down nursing he just did it all by himself without suggestion or prompting!
He had some issues with reflux, the Doctor just prescribed infant Gaviscon, unfortunately that just constipated him. He seemed worse after spiced foods so I cut them out until after he was 6m and he no longer seemed to have a problem with them. Though he was a pretty unsettled baby who slept poorly all around, and still struggles to sleep well years down the line. I didn’t know until he was starting solids that he reacted to dairy, but as I hadn’t noticed the connection, and hadn’t learned as much at that point. I didn’t realise it was the dairy causing what I now understand were symptoms of silent reflux.
That he was now latching on didn’t make nursing easy. He has a high palate, and the difference in latching with a shield vs directly meant his suckling technique was a bit off. Even with assistance we experienced vasospasm, blanching and general discomfort while nursing until he was around 8-9mo when it finally became a lot more comfortable.
Finally it seemed pretty plain sailing, I was able to do a course with my local children’s centre to become a breastfeeding peer supporter, and it was all going well. Until I started having gallbladder attacks shortly before his first birthday. This led to a huge change in diet to eating more healthily, restricting fat intake, avoiding MSG, which removed my symptoms, but didn’t address the root cause, which I’ve learnt a great deal about since. Unfortunately, one day I unknowingly ate a little more fat with hidden MSG, which resulted in a 2am wake up.
I woke up feeling like I was dying. My gallbladder had ruptured. But the doctors didn’t realise that until almost three weeks later when they couldn’t find it laparoscopically. In the mean time I was treated for jaundice, IV antibiotics for sepsis, no pain relief, because they didn’t know it was safe to have anything other than paracetamol (debatably safe any time) while nursing a 15mo.
G still came in to visit daily for the first few weeks, he would come to nurse and have cuddles three times a day and the staff were really supportive. But after my operation I was mentally detached, doped up on morphine for days, and in so much pain from having the operation open that he didn’t come in to visit for 6 days. Which now I regret, but there was little I can do about that now.
When I finally left the hospital 6 days post op, he walked over to me, latched on for 0.5 seconds, and walked away.
It was like he was touching base, and he hadn’t forgiven me for not being there.
He went on a nursing strike, he’d slept in a cot during my hospital stay, but wanted to come back to join us, which wasn’t possible with my post op pain relief. It took days of offering dream feeds, and cuddling, touching base, for him to realise I was still mummy and loved him. Then 6 days after the strike began he latched on of his own accord when he was awake, not only as an instinct in his sleep.
Fast forward a year and his little brother, J, joined us. Nursing through his pregnancy was challenging at times, my supply dipped and I was eating pre-bed muesli to boost my over night supply to placate my toddler who would still nurse frequently at night. Juggling a toddler, pregnancy pillow, husband and a heavily pregnant woman in a double bed was interesting at times. Fortunately my colostrum came in around 18, weeks which made life a bit easier.
When J arrived, we had a really healing birth experience. Another prodromal labour, including 32hrs on, a few days off, four days of low intensity contractions before it kicked off properly. Then he arrived at home, with a birth pool, his big brother slept through his arrival and woke up an hour after he joined us.
They tandem nursed for almost 2.5 years. Challenging at times, but a blessing throughout the ups and downs. To be able to show them love, continuity and care that way was a blessing to us all.
J latched on beautifully, the midwife observed he had a “small” tie, that wasn’t a problem because his latch “looked” perfect… superficially from the outside. Within three days I had blisters. Four days bleeding nipples. On day 3/4 I managed to get in touch with a local Le Leche League leader who had recently trained as a private tongue tie practitioner. Day five she assessed his tie, divided it, and his latch improved tremendously. Within a couple of days all the blisters/bleeding had completely resolved.
Then he had nappy rash, which I was reassured was… *normal*.
He had poor stool frequency, which I was told as long as he’s gaining is *normal* for breastfed babies.
He had milk spots, or baby acne, which were severe but… *normal*.
He started developing dry skin… *normal*
His first vaccines caused him to have eczema and gastritis… *normal*
He had a UTI following his gastritis, and the antibiotics messed up his tummy… *normal*
Delaying his 2nd and 3rd sets of vaccines, avoiding the rotavirus dose, following his UTI, he had more *normal* side effects including worsening eczema and sadness.
Starting solids… he had hives from almost every food… Not normal…
Now I realise none of these so called normal things are actually biologically normal or healthy. They’re just so common and prevalent in our society that they are treated as normal. When really they are all symptoms of something, and I now know symptoms shouldn’t be ignored, regardless of how common they are.
The GP said it was the worst eczema they’d ever seen. The dermatologist barely glanced at him and autopilot-prescribed lots of creams, saying it’s not diet related. Even though I showed him pictures of a full body hive break out from him touching eggs. Food doesn’t effect eczema, he said. He reluctantly did an allergy blood test, concluding he had at least 3 IgE allergies, but to keep feeding them to him because they won’t affect his skin. It’s unnecessary, he said.
J had about 13 known food triggers by his 13m check, all giving IgE symptoms, not normal.
We then started a total elimination diet (TED) and have since identified over 50 foods, and numerous chemicals and other physiological and environmental triggers, most if not all of which affect his skin and can cause eczema flares.
His immune system seems to have been pushed over the edge by the ingredients in his vaccines, which are known to cause mast cell degranulation. This means his white blood cells that release histamine are so trigger happy, his immune system responds to all these things with reactions. Depending on the severity or accumulation of exposures, any one of these could cause anaphylaxis. At the time of writing this, he is almost four and had 6 anaphylactic reactions to date. Though the severity of reactions varies, typically he will have at least a handful of reactions weekly, though often he has multiple reaction daily.
About 6months into our TED I was getting fed up of posting in dairy free groups and knowing there were mamas out there like me on extreme elimination diets. In groups where most mamas are only free from 1-3 things, posts about any more than that can get lost in the news feed lottery.
And so, TED mamas was born!!
In the last 2+ years since the group started we’ve flourished from a hand full of mums to thousands, around the world.
Our focus has evolved from being solely diet related, to including a lot more about healing, through focusing on gut health, reducing oxidative stress from environmental toxicity and endeavouring to stabilising mast cells.
From my walk, research, things I learn from my fellow mamas in groups, mixed with some of their contributions too; I hope this space will be a place of encouragement and support for others in their healing journeys.
TED life is tough, here’s hoping we can make it a little easier for each other in the trenches.
❤️TED mum aka Lillie.
* Lecithin for recurring mastitis:
* Help my baby won’t nurse! Breast refusal:
* Healing histamine, vaccines and mast cells: