Remi is a child that is born with inherited gut issue.
I knew her health wasn't right from the moment she came home.
She had jaundice. Her nose is congested every night, we have to suck the snot out, otherwise she won't be able to sleep. Her sinus issue is an ongoing issue, some days better than others, but seem to always be constant.
What I did not know is, mucus build up, is not just a localised issue. But there is a bigger problem behind with her body's immune system.
Upon starting solid, she has constipation issue. Bad constipation issue. Bleed in her bum hole. Of course I did everything I could at the time. Changing her diet. More fibre. More water. Less dairy, etc. It was confusing puzzle and when it finally subsides 6 months later, I don't even know what made it better.
She always scratches, even from 6 months old. As she was young, we could distract her out from it, or hold her hands and don't let her do too much of it.
From infancy, not sure when, Remi would probably always have citrobacter pathogen, inherited from me. At 12 months onwards, I am sure the citrobacter pathogen manifested. Combined with stress, lack of proper sleep, constipation, her whole system is out of balance, the citrobacter pathogen (along with others) multiplies more and more. Remi stresses a lot as a toddler, whilst it could be classed as 'normal toddler behaviour' but I am 100% certain her out-of-whack immune system is causing inflammation in her brain, nervous system and disrupted neurotransmitter as well.
Remi's anxiety is to the roof, even since infant. I, as the mother, is giving my all, day and night around the clock to provide emotional comfort and safety for her. However a lot of resentment and stresses in the mother, sometimes exploded outwards as outburst to the whole family.
At around 1.5 year old, Remi got hit by covid-19. It produces rashes in her skin.
At 23 months old, she got hit by HFM (hand foot mouth) disease except its not the typical symptoms., it hit the skin. Hundreds of dots breakout in her skin.
At 24 months old, even after HFM virus is treated, her eczema is at the worst.
Skin is the largest organ in your body. It is the biggest indicator that your immune system is out of balance. Eczema is inflammation on the skin.
Dermatologist prescribed the strongest steroid to a toddler. We applied it for a few weeks and her skin cleared up. Dermatologist suggest to continually keep up with using steroid until older age, where she can access an eczema injection from 12 years old onwards. Upon researching, the injection (dupixent) is just to 'shut up' specific T communication cell, not to flare up the eczema, I was extremely disappointed that the best solution that can be offered by western medical world is just a band-aid treatment.
I know for sure, there is an underlying gut issue.
From Nov 2023, I was determined to make radical change to her diet but I am not sure where to start. There has to be something else. Booked appointments with naturopaths. Introduced to the concepts of "salicylates". Was given some kind of solution, but not too satisfied as it feels a bit like a guessing game. Then double down in treatment in Feb-2024, meeting a naturopath in Carindale who seem to be the best in kinesiology practice.
At the age of 2, this kinesiologist argues that Remi's gut system does NOT agree to: Sugars, Amines, Glutamates / MSG, Egg, Milk/Dairy, Gluten, Corn, Yeast, Soy, Peanuts, Shellfish, Nuts, Flavour enhancers, Citrus and Goat.
I fell to my knees. What can I feed my child then?! Kinesiologist convinced that she can 'heal' remi by keeping her nervous system calm towards these foods. I wasn't convinced entirely but I had no choice. but to go with the treatment, which was very arduous and painful (Feb-24 to Jun-24 for about $1000).
Eliminating all of those food are impossible. It may be possible but it will kill Remi's desire in food. She basically can only eat plain (slightly salted) meat, and plain veggies. And that is it. Psychologically it would be too damaging to her, and to me. I was still trying to work hard in introducing new safe food to Remi so she can gradually eliminate those, but I felt in complete despair on how difficult this whole thing is.
In Jun-24, I decided to try another way, a complete gut microbiome test that cost $500 all up. And I also discovered a new guidance by Karen Fischer the Eczema diet. Ordered 3 books from Karen and devoured it.
I learnt more on how Remi's gut system works, how all the food I am giving her, the sleep, the stress, her daily life is affecting her gut, skin, brain and nervous system. The puzzle pieces start to come together and I realised that EVERYTHING IS INTERCONNECTED.
At the age of 3, I found the right naturopath for Remi. She is experienced in dealing with the gut microbiome test. Turns out her citrobacter reading was found to be 992.64. Out of normal range of 0-5.
It honestly explains everything.
Herbal liquid is prescribed for the next 12 months to eradicate this citrobacter phatogen. Naturopath also gives supplement "Marshmallow powder" to help with balancing her neurotransmitter.
Now we are 2 months into the herbal liquid. There has been windows (a couple of days) where she is completely itch-free on her hands, or itch-free on her feet, or itch-free on her knees. I could not believe it. But the itchiness comes back. They all take turns. We still have to prescribe steroid every 10 days, aim is to reduce the frequency.
Her sleeping has improved significantly. Some days better than others. But she sleeps through the night a lot more now. When she sleeps very well, her skin improves significantly.
The latest blood test shown significant igE reading (allergy level) being 791 (normal is 0-60), cannot explain exactly what made it out of whack, but it confirms that the journey is not over. Theres still far to go. But at least we have a parameter to work with.
Being a threenager, Remi is getting pickier with her food. It is harder to get veggies into her system.
I hated not being in control of things, I hated the ambiguity, guessing game nature of this mysterious gut work that we do for Remi. IN 2024, a lot of things are still LIMITED. I cannot wait in twenty years time for gut work research to improve in terms of its markers, ability to pinpoint issues, so that I don't have to feel so much in the dark.
But this is so far, as best, as we can get, I think.
The journey still feels VERY long, but I am telling myself to remind hopeful.