The Truth about Remi and children like her

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.

My biggest problem currently

 Let me blow up on this topic


WHY DOES EVERYTHING TASTY HAS TO BE DAIRY


Cheese

Butter

Milk

Yoghurt


IT HAS TO BE SWEET


Chocolate


IT HAS TO BE BURNT, CRISPY, CRUNCHY


Chips

Fried chicken 


IT HAS TO BE TOMATO 


Tomato tasty 


Anything with  dairy, sugar, amine, etc.


LIFE IS SOOOOOO UNFAIR 

The biggest part of parenthood is diving down to childhood trauma involutarily

We as parents have the obligation to really look after our bodies and our minds. To Really do that

Because that is the only way we can stand above the childhood trauma that we had, flashing before our very eyes, in that instantaneous moment, taking our rational mind over, and exert past trauma and lashing towards our children.  

When we felt like we are not being heard.

When we felt like we are not being listened to. 

When we felt like we are not in control over things.

I have a tendency to just - suppress suppress suppress (don't hold my boundary strong enough, don't use my words well enough to communicate the strong stance of not wanting to go there), then all of a sudden explode, yelling and shouting. 


That is not the kids problem.  That is my problem for not being able to express my needs better. 

And that is utmost work in progress.

It is not fair for our children, to be trembling crying on the floor

It will not work for our children to be treated like that, they will not learn anything


Whilst I know avoidance is not always the best, repair is better, but I am still learning how to do that repair as well, which is something I am lacking as well


And now I am dealing with the guilt and I am crying myself for letting that happen. 

I did manage to stop myself that moment, decide to forego that probiotics & teeth brushing, rather than choking Remi on the probiotics in a syringe in the car as she swings on the seatbelt as she clearly said she does not want it. 

I managed to stop myself from doing that action, which I know will scar Remi from any syringes going forward. 

I did try to pace myself, take deep breath as much as I can, letting off steam bit by bit in least damaging way for the kids. 


I feel like crying myself, from everything, most importantly from my own behaviour, under-enforcing boundary and over-reacting from getting suppressed explosion. 


Then I must remember that I was hurt too, in the past. 

That was my old way of coping and I see it better

I need to stop the vicious cycle and be better.

I need to remember to be kind to myself too.

To the past, hurt, younger version of myself. 

The crying turns from feeling regretful to feel sorry for myself.

Licking my own wounds.


I can only promise to my daughters, to my husband and to me, that I will take care of myself better, so I can control my emotion better in the future.

Parenting is hard :( 

Working with your family members

 As children are getting bigger


we are learning to work with each other


Alexis is the most similar to me with her way of thinking

Its just that  she is very fast, and I am very fast, and if we both too fast, in a slightly different direction, train crash. 


Jack is the most opposite to me

They are also adapting to me 


Do I want the experience to be pleasant? then I need to balance my mouth & my mind

It is also about 'making the experience' pleasant for Remi, Jack

so it is about angle-ing it so that they feel like they are part of the journey too


it takes time, of course

I'm sure we get better as we learn more :) 


I always can work with my mom, but I never really work with my dad, until I was 32 years old, working on management rights together. It was a pleasure to work with him, I admire his brain a lot. 



Frustration Frustration Frustration Frustration Frustration Frustration

 HEre i am screaming


SCREAMING


How hard does things have to be!!!!!!!!!!!!!!!!!!!!!!!


This has a high risk to 


* undo everything i have done


I have to do it tactfully


But I am so nervous !!!!!!!!!!!!!!!!!!!!!


GAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAH


-------------------------


I have increased breakfast options for my kids 



My vision for the kids

 Alexis (6 years old)


Something to do with people, for sure
She will understand the psychology of people,  groups,  community
Her learning about famous people, history, cultures, war, would help her understand about the psychology of society 


Remi (2 years old)

Although it is still a bit too early to tell. She has a less 'people pleasing' tendency than Alexis.  She is less swayable by things.  She has a lot of anger and  fight for justice.  She has particularly strong conviction about things.   

My view about children

I rather then talking about the skills they are practicing, the imagination they are thinking, the things they are creating / building, the things they are doing to improve the life of themselves or others, the things that they learnt about the world


Parents are getting over their guilt by justifying themselves by being immersed in screen junk food and peer play with no adults whatsoever - is the way life is nowadays & it’s acceptable



When their kids are disconnected & defiant, parents resort to punishment, bribing to buy more materials, rewarding good behaviour by screen time, whilst the reason why they are disconnected in the first place is - because they just want - genuine deep connection - who their parents can provide more selflessly than their peers. This is a fact. Kids need the following before they can learn to have a trusted boyfriend or partner

emotional regulation


It is no wonder why anxiety depression and many mental health conditions are worst than ever in this society



Short term (one day) harmless, long term it’s unhealthy esp for young kids who don’t know any better.



Two days of being in this acceptable culture is enough to open Alexis’s lid.  Now she also sees how the most laidback parenting is. She sees other kids get what she doesn’t get. Comparison is the thief of joy



Im fighting so hard to go against the norm

I’m trying to find other parents who aren’t in mainstream



I know exposure to mainstream is inevitable but I also want her to be exposed by families who aren’t driven by junk food, screen and materialism in gaining their daily happiness