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Tapestry Threads

I am no stranger to the connection between diet and its effect on health. When I was growing up a popular slogan was “You are what you eat”. As a child I had no idea how much that simple statement would come to play in my life & now my children's. I have several chronic health issues that I manage and my side of the family is riddled with numerous conditions that modified menus help in maintaining. It becomes second-nature & more of a necessary lifestyle. The alternative choice is ignoring the impact that trigger foods have and suffering the symptom flare-ups. I had hopes that these genes would not be passed on to my kids, that they would be spared and able to live a life without needing to consider their diet (life eating). That turned out to be rather naïve and ignorant on my part.


Unraveling the tapestry started by picking at mysterious rashes, distended belly, chronic acidic diarrhea, colic, developmental delays & regression and illness after illness. It has been exhausting & time-consuming. I’ve gritted my teeth, cried in frustration, lost sleep, spent hours reading & researching, stood my ground when others question the necessity, pushed doctors to help, second-guessed observations and most importantly persevered & trusted my intuition. I’ve thought about throwing the towel in & saying I’m done.


And I have done just that several times. It’s just too much to keep up. Then, I look at my children's precious smiles & know that I cannot give up. After my self-indulged hiatuses I’ve found that I’d rather spend my time being vigilant over their food & trying to mitigate symptoms than dealing with the fallout & how miserable they can be. I can continue to hope that they will outgrow overly sensitive bodies, but also recognize that may not happen.


Ivan's food issues started at birth. Now, I would offer some argument to that. While he was in utero, I had an enormous amount of food aversions. Looking back at the foods I could not eat & comparing to the foods he does not tolerate, it is startling how many of my aversions & his intolerances line-up. Coincidence? Personally, I don’t think so. (So far this is also proving to be the case with Holly). Makes you think...


Ivan's food issues are the result of a combination of factors – the main ones seeming to be the genetics of family history (allergies, sensitivities) & a metabolic issue. His symptoms range from systemic reactions through neuro-behavioral changes and everything in between. To date Holly's main symptoms are horrible GI issues like trapped gas, major abdominal cramps & sinus infections.


I guess the best jumping off point would be when Ivan was an infant. Nursing was not the cuddly bonding time that so many moms & babies benefit from. It was a constant struggle. Fortunately, there were no “mechanical” issues on my end to compound the experience, but by 2 months I was tracking my food trying to find causes to troublesome symptoms. Ivan would nurse for typically 5-10 minutes, no matter how much or what type of coaxing was done to try for more. Holly's a quick nurser, too.


Ivan had an insatiable appetite & still does. We tried supplementing with formula, hypoallergenic formula, elemental prescription formula, and cow & goat’s milk – all to no avail. All caused symptoms. At 10 months old, we told the pediatrician that we were going to trial the Gluten-free, Casein-free diet; his reply was that he didn’t feel it was necessary and it would be rather labor-intensive. But, if we wanted to go that route, it was our choice.


The GI specialist that we saw at a university several hours drive from home was of no help when I informed him that Ivan was reacting to the elemental formula. The doctor’s response was that he didn’t see how that was possible. He had other patients with more sensitive systems than my son’s and they tolerated the special formula. No other treatment/advice offered from him. Talk about supportive! So we marched onward forging our own path after receiving that type of feedback. To say this has been frustrating would be a gross understatement.


When Ivan was around 5 months old we started to introduce solids due to his insatiable appetite. The symptoms flared up & became even more challenging to figure out then. Not only did I have to track everything I was eating; now I had to track his intake. Trying to find culprits to symptoms when having to consider two diets was infinitely harder, impossible at times. I was determined to nurse until he was at least 1 year-old. With all the research that has been done on the benefits of nursing and having a healthier immune system, I persevered especially since he was already showing signs of allergies.


I had a countdown going for Ivan's 1st birthday & not for the reasons most moms’ do. I couldn’t wait to be done with the nursing. I just could not take it anymore and I hoped by taking my diet out of the equation it might be easier to find the culprits to his nasty symptoms. Unfortunately that was not the case. For Holly, there was no timetable, just going on trial and error.

 

We made a hard decision to wean Holly at 18 months old. She only had 2 foods and goat's milk, but something that I couldn't ferret out in my diet kept her flared up.


I started meticulously logging/charting when Ivan was around 6 months old. The charting has evolved from the beginning. In a nutshell, I logged EVERY thing; rashes/symptoms prior to eating & after eating, anytime symptoms appeared, what & how much he ingested & time of day, diapers contents with frequency & consistency of deposits, behavioral changes, seizure-type activity, environmental allergies, medication reactions, illnesses, toileting issues, changes in routines, sleep patterns & disturbances, and introductions of new foods.


Hunting for patterns to try unraveling mysterious, troublesome symptoms has been a challenge for me & I consider myself a detail-oriented person. It’s hard to “know” what causes some symptoms because there are so many variables to consider. For example, behavioral changes are they due to an adverse reaction or a typical developmental phase? Being a stay-at-home mom has helped because it gives me more time to see the day-to-day nuances.


Sidebar: I used to say for me, being a SAHM was not my cup of tea. I now tell people that I work at home & am growing into it.  It’s not at all what I envisioned it would be. I would go to the mat with anybody that says it’s not a full-time job, especially in our home with all the hours of logging, doctor appointments, reading & researching for answers, etc… And then trying to still have time to just enjoy my kids & attempt to keep house. Housekeeping is definitely not my strength & depending on how you look at it, I have a rather convenient “excuse” to not have an immaculate home (not even close). If I have to choose between our family’s health & “fun” time or cleaning, cleaning’s not even on my radar. There are days that I wish I could do it all, but I’m getting better at realizing that I’m not Super Woman and mostly I’m OK with that.


After countless doctor visits, tests, therapies, logging, reporting observations & systemic reactions we have an extensive list of diagnostic labels for Ivan. This journey has been long & tiresome, but well worth it because it is all done for the benefit, success and well being of my children.  I have to add that we are NOT label-seekers nor do we want labels. We want to understand the cause & effect. We want to know the ins & outs of our kids so that we can best help them be happy, healthy & successful with their lives. We want to fully encourage their natural strengths & have coping strategies for any challenges. We are firm believers in Early Intervention and the benefits it had being paramount to where our son is today on this arduous path. We also feel strongly that our proactive perseverance has been & will continue to be the best tool in our hands.


Ivan is 5 years-old and we are just beginning to feel like we can weave the tapestry back together and hopefully continue adding on many more threads. Our journey with him has also paved a smoother path for his sister because we've been there, done that. We have more knowledge & awareness that help us "catch" things sooner with her, so hopefully she doesn't suffer with symptoms untreated for as long. And this go-around we have an allergist on our side, listening! He knows the kids, the history & us. And. He. Hears. Us.


Aside from unconditional love, the best thing we can do as parents is to advocate for our children. Do not accept the pat answer of “let’s wait & see”. Waiting & seeing is the absolute worst disservice that can be done for a child. If you have a niggling hunch that something is atypical, you owe it to your child to thoroughly check it out. What’s the harm? Worst-case scenario – you’ll get peace of mind that things check out okay. And best case scenario – you’ll get the jump start needed to give your child a fighting chance to mitigate how much a special need impacts their life.

 

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