The joyful tears of an ulcerative colitis mom....
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As many of you know we are on a journey of healing my 4 year old, Lucia of ulcerative colitis naturally. I’ve been sharing our journey here for a few reasons….
I did so much googling when I was trying to find our treatment plan, and I didn’t find much so I vowed to chronicle our journey for others. You are not alone, it IS possible to heal naturally and it does take a lot of hard work and diligence.
To help me process, my wise, kind mother-in-law pointed out how she has noticed that my blogging seems to really help me process our journey, and I think she’s right.
To share tips, resources and community. I’m here for you, if you want to talk, share your story, ask for tips (although I’m not a doctor, just a passionate mama)
So to catch you up if you’re new to our story…
These others posts may answer some of your pressing questions so before I get into my thoughts currently, I’d highly recommend skimming these others posts.
Our healing journey Part 1 (June 2018)
Our healing journey Part 2 (Sept 2018)
Natural Supplement Lists (May 2018) -I’ll be sharing some updates/changes to this below.
Our healing diet (Oct 2019)
Now onto the current day, at the moment we are doing regular labs ever 3 months with her pediatric GI, to check inflammation levels. There are several standing orders which I share about in my previous posts, I haven’t completed all the labs yet, but the ones that have come in, show some increased inflammation, I believe it is low levels. After her last labs in September I was on cloud 9 because her levels were the lowest they had ever been in her life and I was so excited!
I was being diligent, reading labels carefully, hounding family and friends to clear anything and everything through me, since Lucia’s list of allergies and intolerances was extensive. And I was giving her supplements every day, never missing! Once I saw the labs in September I stayed vigilant probably for another month or two, then I started to think about re-introducing foods, since the naturopath, functional medicine doc, pediatrician and pediatric GI all said we could once her gut was healed. But I didn’t have a great system for doing that. So I just did it in a very unstructured way, with no real way to measure or determine how it was effecting her. Also, we had determined that asking Lucia how a certain food made her feel, and her being aware of her body is in the works, but DEFINITELY not accurate, she’s 4 after-all. I'm 33 and struggle to be aware of my body all the time.
I feel guilt.
I feel responsible for her health.
I see a direct correlation between my vigilance and her inflammation.
It’s so much pressure! My husband is allowing me to take the lead on all things related to Lucia’s health, which in general is helpful, because there are so many decisions to make and I am her primary care-taker. We do discuss things together, but when it comes to a route to go, he encourages me and helps me process what is best.
He told me last night, “just because her inflammation levels are higher DOES NOT MEAN you aren’t doing a good job. You’re doing a great job babe.”
As I write this, tears are streaming down my face, it’s an emotional journey watching your little one face health challenges, and I want each of you to hear this.
JUST BECAUSE INFLAMMATION LEVELS ARE HIGHER, DOES NOT MEAN YOU AREN’T DOING A GOOD JOB!
So that’s where things are at, I’m feeling defeated and trying to reframe it in my mind to focus on the fact that this will motivate me, that this information is informative (not judging me, as if information could judge). We DO KNOW what works and we need to stay the course, even though her supplements every month cost us around $100-$200, it’s worth it!
Ok now onto the updated supplement list…..
1. VSL #3 (specific IBD probiotic) 2-3 capsules per day, opened and stirred into all-natural applesauce
2. Iron Supplement (because her iron levels are still low)- I have bought tons of different iron supplements, in different forms and flavors. This is the one that her functional medicine doc recommends, I don’t understand all the science behind it, but since it has high bio-availability her body is able to absorb closer to 90% of iron from the supplement versus others where the body only absorbs about 10% of the iron. Oh also, this one TASTES GOOD, like Lucia thinks it is a treat!!
3. Papaya Enzyme (1-2 per day, after a meal) to help with nutrient absorption (her stool color was too light and the naturopath said that relates to not enough transition time in the intestines- ie her food was going through her too fast)
4. Slippery Elm, 1 capsule per day, opened and stirred into her all-natural applesauce at the same time as VSL #3
5. Kids Tummy TLC (1-2 times per day, 5 drops each time in a juice or water)
6. Fish Oil (500 mg daily) - We opt for the liquid form of this, since Lucia isn’t supposed to have citrus, the gummies all have citrus in them.
7. Vitamin D (I found a chocolate flavor chewable, and she loves it) This one is so important!! When you have an autoimmune disease, keeping your vitamin d levels between 80-100 is the goal! Lucia’s MD’s agreed that her levels were low, but basically said everyone’s is low, it’s fine. I reject that idea! And what is so interesting is that at the end of the summer in Sept, Lucia’s levels were 75, and now, 3 months later, her levels are down significantly to 48, like I mentioned before I haven’t been very consistent with her supplements in the past month or two, BUT this lab result is a clear indicator that her body needs vitamin d in order to heal and function best! I requested this lab be added to Lucia’s regular blood work, as a nutritional indicator, and her MD’s were supportive of that, we seriously have an amazing care team, and no they don’t talk to each other, but each one knows we are working with others and supports our decisions, and I respect the input each of them has to bring to the table. (Ok, wow I could write a whole blog post just about vitamin d too)
8. Rhizinate Functional Medicine Doctor recommended as we are healing her gut.
9. Chewable B12- Methylcobalamine - This one is super important and something new I’ve learned. When you look at the CBC panel, look at the MCV score, which is showing you the size of the red blood cells. Her functional medicine doctor also recommended that the cells be 89, if they are larger than that or smaller than that, there is a vitamin B12 deficiency, most doctors don’t care about this number, as long as it is within the “range” which if you start to learn about that, is really not helpful and the range doesn’t actually mean you are healthy in that area. (Ok, I could honestly write a whole blog post just about this topic, so I’ll try and be brief) Essentially you should be taking B12 (only the methylcobalamine version) if your MCV on your CBC panel is not at 89. (I’m not an MD, so do you own research)
10. Vital Proteins Collagen Peptides - First off, collagen peptides over collagen powder, the peptides are higher in bio-availability, meaning easier for the body to absorb, especially people who have chronic inflammation, getting supplements with high bio-availability is especially important! We stir in one scoop per day to her applesauce with her VSL #3 and slippery elm.
Phew, lots of information.
For easy shopping, my amazon store has everything linked!
Please feel free to e-mail me if you have questions. I just love sharing our healing journey.
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