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. 


Thursday, August 6, 2015

Speech and early literacy fun

James’ speech and communication continues to be something he really enjoys. For his quarterly evaluation, which happens every three months, and for funsies, I listed all of the words/word approximations that he has...and got to 65! All of which he has worked incredibly hard for. Most favorite and most frequently heard is “no.” :) Our Speech therapist does a combo of directed speech play and just kind of following his lead to incorporate words in his daily routines, and we follow suit throughout the day. With his two-year-old self, the strategy of following his lead works especially well right now.

For most multisyllabic words, he still picks out one syllable or sound to say (e.g., “za” for pizza).  With the low muscle tone, many times it’s harder to understand children with Down syndrome, but the more practice they get, the better. We’re working to say the full word and to also begin to say two word phrases.  I put together something called a pacing guide (it matched my crafting abilities) to help him visually see the two parts to a word.


I just point to each sticker as I model saying each syllable. This can also help with when we expand to two words, and we can add stickers, as needed! 

Kids who have Down syndrome tend to have stronger visual memories over auditory memories, and this definitely holds true for James. So we’ve been taking advantage of his visual memory by doing a lot of speech practice with pictures and the accompanying printed words.  See and Learn has some great flashcard sets and apps, and he loves them. 

With the strong visual memory, reading can also be a strength. James has started naming some of his alphabet letters when he sees them and/or verbalizing the sounds that they make. The LeapFrog Phonics Magnetic Letter set was probably one of the best 15 dollars we’ve spent—he loves that bus! We can play with letters together, we use it for PT to stand, and because the bus has a magnet where the letters are to be placed (making it less frustrating), it’s helped with his fine motor skills, which has then transferred to his puzzles. Though they used to be on the hate list, he actually doesn’t mind puzzles now. At least with a little bribing. Thanks, Bus!

The letter X is hilarious!


And for fun and because he doesn’t seem to mind, we started working a little bit on recognizing sight words. Again with the visual memory strength, emphasizing sight words will probably be key to his reading success. We try to inundate him with print and language through reading together and having pictures and words paired together, but I zoned in on super familiar sight words for more direct instruction—Daddy, Mom, and James to be exact. I guide him to match together the word flashcards, which are underneath the pictures of us. With enough practice, he'll start to identify and read the words without any picture help.



Eventually, we'll use those words to make some early reading books with simple, predictable sentences (e.g., I see Mom. I see Daddy.) that we can read together. Lots of these ideas are from Teaching Reading to Children with Down Syndrome:  A Guide for Parents and Teachers by Patricia Logan Oelwein.  Though a little older (written in the 90’s) there’s some good stuff in there.

And of course- we only do these activities in small chunks and only when it’s fun! Last thing I want him to do is to start hating words and reading when it’s something that he enjoys so very much.

A couple of people who have walked similar paths have also just suggested labeling toys and things around the house with index cards to make it even more print-rich. They’ve seen this visual support really strengthen their children’s speech skills and hopefully overall literacy skills as well. This has been on my to-do list for a while. One day.


I am reminded continuously that practice does indeed make perfect. The more we do something in small chunks, even when it seems completely ineffective, the more we see results. This progress usually happens over a long period of time, but totally worth the wait. Just today, I watched him independently pick up letters for his alphabet train, name them excitedly, turn them so the letters were upright, and place them properly in the train to hear what it had to say about each letter. A few months ago, he would have just shaken the letters back and forth or banged them together and called it a day!
There's no way I'm pretending to play with the train for your posed picture right now. Also, you put the Z next to G. That makes no sense. 


Keep working and playing hard, my friend. You’re doing great.



Monday, April 13, 2015

Moving right along


James took his first crawling steps on all fours mid-January, and we were absolutely thrilled.  We piled his favorite toys on top of benches and other things just out of reach, so he was motivated to stay on his hands and knees instead of going to his favorite, army crawling. However, we knew he was bound to come up with something more creative than just traditional crawling.

Which brings us to the half crawl, half side scoot!



Though less efficient than army crawling, this turned into James’ preferred method of getting around.  We figured it was because he always liked to get into a sitting position on his left side, and the side scoot allowed him to do that immediately.

It drove us all a little nuts, especially me (and James), since I was mostly just chasing him around on all fours, cramping his style, blocking him from sitting on the left side. One time, he stopped in his tracks to turn around and sign “stop” to me.  Sorry, buddy, not this time…but way to use that sign appropriately!

His PT also recommended using a hand towel to sort of scoop under his chest and lift him up, keeping him on all fours. He didn’t mind this so much at first, since it seemed a little less invasive than someone’s hands on his hips. But when the towel lost its magic, we had to entice him with a favorite toy across the room, and when he went for it, quickly wrap the towel underneath him. It didn’t take him too long to begin to avoid the trap, but the strategy definitely did help when we didn't overuse it!



Every time we were with him on all fours, we also just guided his body to get into sitting on his right side to sort of even out the crawling.  Throughout this process, we reminded ourselves that the primary goal of his physical therapy is not necessarily to accelerate his movement, but to make sure he’s not developing compensations in order to help his overall gross motor movement for the long haul.

Wait..you're calling my side scoot a compensation?? YOU try it!


We slowly started to see more all fours and less scoot-crawling, and now, he’s starting to go distances on hands and knees without any prompting!  He has a sibling coming in August, and with my expanding mid-section, I have to say that I am thankful for less all fours chasing these days. It’s also so gratifying to see him motivated to go, go go on his own.

We continue to work on his climbing (hooray for stairs and obstacle courses!), standing, squatting, and pulling to stand, all often involving goldfish crackers, bubbles, or kid music videos.  And since he’s been crawling more traditionally, he’s starting to pull to stand from the floor on his own! We were thrilled this week when he crawled from his room to the bathtub, pulled up on the bathtub, and was trying to figure out how to climb in. 

His hard work is paying off. Maybe it’s finally time to baby proof. J

As a good friend told him, go get into trouble, James. You’ve earned it!

Thursday, February 12, 2015

Our Funny Valentine

Kids are quirky, and our almost two year old is no exception.  He makes us belly laugh every day.

I’ve heard that naps are wasted on the young, but not on James. This kid loves his sleep.  Whenever he sees his blanket or puppy that goes to sleep with him, he blows it a kiss and then promptly pops his thumb in his mouth.  Sometimes after a nap, it takes him a few minutes to be willing to part with his blanket.  When we ask if he wants to come with us and play, we get a “no” and a dive toward his precious snuggle things.  If he was able to climb right now, I’m pretty sure he would climb into his crib rather than out.

Throwback to a year ago when he was enjoying his nap in a super comfy position


In the morning when he wakes up, we’re often greeted first with his hearty “ho ho ho” laugh, and then “bye.”  At first, we thought he was kicking us out to get some more sleep, but we’ve learned that “bye” is currently both a farewell and a greeting--like "yassou" or "aloha." :)

After the “bye” we get a fist pump and “ts,” which means “dance” or “song” in James’ language. We’ll hear this request all day long, and he loves to begin his day with it. Favorite songs these days include anything by Laurie Berkner or Larry the Cucumber, “Wheels on the Bus,” “Itsy Bitsy Spider,” “Shake it Off” by T Swift, Pharrell’s “Happy,” and specifically the Ludacris part in Justin Bieber’s “Baby.” When he knows Luda’s coming, it completely overwhelms his little self with joy.

Other things that bring James joy—finding the “moon” in his books. He always points it out (“oo!”), and likes to make sure you are aware as well by guiding your finger to it with his little hand.  He also enjoys hugging stuffed animals and feeding them cookies, telling monkeys to stop jumping on the bed, saying A-“men” repeatedly in church, tomatoes (so many tomatoes), Elmo, throwing blocks, dance parties, and vacuum cleaners. 

Meeting Elmo with one of his best buds
Sharing a snack


Speaking of vacuums, I made the mistake last night of forgetting to put ours away when it was right next to his time out spot.  The entire minute, he just stared at it and told it to “go,” completely distracting him from his wrongdoing.

More and more word approximations are emerging, but our signs are still going strong, and he’s started making them up! His two latest are crossing his arms for “pretzels” and holding up his hand like he’s carrying a pizza for “pizza,” accompanied by a “za!”  I don’t know that he’s actually seen or paid attention to a non-stick form of pretzel or someone carrying a pizza on the shoulder, but they both make perfect sense. We now have requests for pretzels during breakfast (and tomatoes…always tomatoes).

Happy Valentine’s Day, James.  Love you more than words can describe.




Tuesday, December 16, 2014

Won't the real James please stand up?


So James started army crawling the beginning of June, and six months later….still army crawling. Like a few feet if he’s very motivated.  He could army crawl anywhere if he wanted to, but he has this gift of being satisfied with whatever is right in front of him. If that’s nothing, there are his feet, hands, belly…the possibilities are endless!



Joke's on you, Mom! I don't need any of those toys you strategically placed away from me!



 However, we can see a big difference in his overall muscle tone, and he’s getting better at going from sit to stand when he’s sitting on a bench or a step! And we have plenty to keep him busy to keep moving toward that glorious day when he will be walking. Here are some of the fun activities and contraptions James gets to experience:

Proprioception activities

Proprioception is our ability to sense the positioning of our bodies.  To help improve proprioception, therapists often give patients a little more input to help stimulate that feedback to the brain.  James loves this stuff. One day, Thomas was working to help James sit with his legs in a 90 degree position on a bench. This is what happened to James.

Loving the ankle weights and theraband to help with legs going in the froggy position


When Thomas busted out the ankle weights, I was a little terrified, but James absolutely loved it.  The weights helped give feedback to his brain that this was the way his little legs were supposed to be positioned when sitting on a bench.  We started using the ankle weights when he was standing, too, as he often didn’t really want to bear weight and just let his legs hang.  Once we started using the weights, we started to see some improvement. 

James’ PT also helped us create a makeshift weight belt, using a sock and the beloved ankle weights again.  




We secured the position of the weights with rubber bands, and now we use the belt when we play on all fours and when we practice walking on our knees as well. The knee walking (sometimes with our knees over his, walking him through the motions) helps develop the alternating motor pattern James needs to crawl and eventually to walk, all with the bonus input of the weighted belt.



 Activities with new, fancy orthotics: 

Though the ankle weights helped James’ standing, he hyperextended his knees like crazy, meaning that he locked his knees to the point that he would sort of hang on his joints.  Definitely not healthy for his little legs in the long run.  So we started to look into some orthotics.  Often times, kids with Down syndrome will get a SureStep SMO (Supra Malleolar Orthosis).  This is because of soft and flexible flat feet. The SMO will help support the ankle and right above the ankle to allow for more stability. 

We needed more support than the SMO offered, but we also didn’t want to inhibit James’ development and movement during floor play with an orthotic that was too restrictive.  So we talked to James' therapists and individuals we respected and trusted, and eventually got this fancy thing!




It has the SMO, but on top of it, there’s a pullover that gives a little extra support when standing, and it becomes an AFO (ankle-foot orthosis). http://www.surestep.net/pullover.php

This brilliant contraption has been a blessing to James.  When we practice standing, we put on the pullover.  Otherwise, we hang out with just the SMOs when we’re doing floor play.  The only negative thing has been finding shoes that are big enough to fit over this monstrosity.  We had to go up three sizes, but the wonderful folks at Stride Rite were committed to finding a shoe that would be just right.  

And to practice standing and sitting and standing again, we sing the chorus from Eminem’s "The Real Slim Shady"- his new favorite song. Parents of the year. In our pathetic defense, it was the first song that came to mind that included something about standing up.  

What are they singing to me, and why are my shoes so giant?

We also put stuffed animas on top of our head to get him to stand up and grab them! The best thing for him is engaging his quads in moving up and down with controlled standing and sitting.





 It’s awesome to watch him get a little bit stronger each day.  Though it takes a little bit longer to hit all of the milestones that typically come to mind, we are blessed to see all of the little changes.  And while we are waiting, our chatterbox has plenty to say! This week’s newest words are “socks” and “wee” for kiwi--two things very close to his little heart. Maybe he wants to talk about walking before doing it. This sweet boy is full of surprises.