Wednesday, November 16, 2016

SIBO: An Unwelcome Party Crasher

It’s been awhile! Over a year, in fact! James has had some big changes in his life. He got a new sister,  

Meet my best friend, Georgia girl! I call her, "Shore-sha"

started a new school, enrolled in the 3’s classroom in his old school, graduated from early intervention. Even took his first couple of steps! Wow, that was a glorious day. It will be a little while until these steps turn into truly independent walking, but we see these little and big signs of progress every day. So many positive things. 

There is, however, one change we could do without…and that’s his small intestinal bacterial overgrowth, affectionately known as SIBO- a relentless beast that refuses to leave.

Without writing a novel, SIBO is essentially when bacteria that should be in the colon take over your small intestine in large numbers, wreaking havoc on your entire system, especially since the health of the gut handles a large portion of your immune system and even neurological function. We continue to hear about how the gut is your second brain, and have seen this to be true in our house!  SIBO can cause bloating, fatigue, nausea, diarrhea, weight loss, weight gain, abdominal pain, shortness of breath, insomnia, a jillion food sensitivities, among other lovely symptoms! Basically, you feel like you have or are on the verge of food poisoning a good majority of the time. You can take antibiotics for SIBO, but there’s a high recurrence rate, as for many who have it, your body is not equipped to fight the bacteria off and get your microbiome back in check.

Interestingly, James’ dad, Thomas, has it, too. Thomas is down 30 pounds since the introduction of SIBO into his life- we sometimes think about marketing it! Both of these boys got it after taking two rounds of antibiotics, both for a sinus infection and ear infection. Thomas started his symptoms in May 2015, and James started in October 2015. For awhile, we had no idea what was going on, but thanks to Thomas’ persistent research, jumping between a million doctors, and a nun’s diagnosis (yup..before any physician called it, she nailed it on the head. The nuns know what’s up!!), after months and months, we started to get to the bottom of it. Which has helped to speed up getting to the bottom of James' situation.

James has had small patches of eczema on his cheeks, since he was about 14 months old, which come and go, but when he was 2.5, after being treated with antibiotics, the eczema became more severe, and we saw MAJOR behavioral changes in him. He’s always had some repetitive behaviors, but these went through the roof. He was mouthing on everything on God's green earth. And I was baffled as to why my sweet boy was just screaming at me, completely unpredictably, and then sobbing inconsolably. He’s always been a routine guy, but he became far more rigid, and I saw his relatively easygoing ways turn into meltdowns.  Anything could set him off---the sun was shining a bit too much outside, a leaf blew in the wrong direction, Mom sang that song that I just asked for but now I hate it.

Was it age? Georgia? Another diagnosis? Maybe all of these? We started to adapt to these new behaviors and learn tactics to help him, and at the same time, we tried every topical anything for his eczema…all failed or helped minimally and temporarily.  We did various types of probiotics, fish oil, the works!

By his birthday, we saw evidence of digestive issues daily, and we knew something else was going on. We went to an integrative health dietician, who shared that the eczema was an immune response, and we started him on soy, egg, gluten, and dairy elimination diets. All of the dairy alternatives seemed to make things worse. So we finally had IgG level testing done to look at food sensitivities, and his test lit up like a Christmas tree. 

The only foods he could have that would supposedly produce zero reaction were corn gluten (whatever that is), goat's milk, mushrooms, alfalfa, yeast, and certain types of meat and fish, which he hates.  So we started to try and give him the foods that he would accept but were on the lower reactive side. Big improvement! Less eczema, better diapers, happier James. But the symptoms would still come and go.

We finally went to see a GI, who eventually prescribed us flagyl, which can be used as an antibiotic to basically atomic bomb the bacteria causing SIBO. Within one week, his skin was perfectly clear, and he was all sunshine. Though problem-solving James’s symptoms was usually at the top of our home conversation topics, for a good week or two, it didn’t even come up! Happier, more aware, more comfortable James was back. Then we suspect those pesky bacteria slowly returned. More unpredictable screaming; bright red, itchy patches on his cheeks, arms, and back; and not so fun diaper changes.

Right now, both Thomas and James are under the care of functional medicine physicians for testing and supplement plans to get their systems working the way they’re supposed to. The issue is that they’re reactive to everything. James can eat literally 6 foods that he will accept and won’t react to. Over time, those “safe” foods become unsafe because of repeated exposure.  We do one supplement every week and monitor closely to see if there are any reactions. Throw in his food preferences, and that makes for a super adventurous mealtime!

The great thing about the functional medicine physicians is that they are really trying to get to the bottom of WHY the boys have SIBO. We suspect that they both have some kind of genetic predisposition to issues with detoxing. In speaking with others who have SIBO, many have had some genetic testing done and discovered they have difficulty detoxing from certain medicines, mold exposure, pesticides, chemicals, or a variety of other toxins we’re exposed to. Potentially, the toxins built up over time, and the antibiotics were just what put them right over the edge. We are generally a wannabe holistic family, but these circumstances have definitely motivated us to step up our game.

We also wonder if James' extreme hypermobility made him more susceptible to the condition.
It's comfortable for everyone to sleep like this, right?

Though it’s pretty cool that he can make his legs go to crazy places, we wonder if this hypermobility is playing a role in the motility of his gut, not allowing his digestive system to push things through the way they're supposed to and letting the bacteria fester. We have to figure out what made them both so susceptible to it and then how to best tackle it. 

Praying friends..we would love your prayer warrior skills for guidance for us and for the healthcare providers working with these guys! They are pretty much two of the strongest people I know. Thomas has never let his year-and-a-half-long-food-poisoning-like symptoms be an excuse for anything. And our little James has continued to make major strides in his development in spite of feeling awful a good majority of the time and not really being able to fully express it to anyone.  

It breaks my heart when he asks us for a goldfish or cheese or tomato or bread or any of his other favorites that are just off limits. (So much secret sandwich, tomato, grape, milk, you name it consuming going on in my house right now!) But he rarely complains! Though he did find a crunch bar on Halloween and out of desperation, bit right through it, ingested the plastic and all. Those were a fun few days!

He’s truly my hero. He very understandably has his moments, but he still manages to greet us with a big smile and “Good morning, I’m fine, how are you?” every single morning….and afternoon…and evening. J We love this little guy to pieces. 

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