The Plot Thickens: Enter PANDAS (Not as friendly as it sounds)

We have had both a relieving and panic-inducing piece to James’ puzzle revealed recently.

 

It started a little over a month ago when he was miserable with these bizarre ulcers on the bottom half of his tongue. We thought it might have been either an allergic reaction or something viral, but we went to see the pediatrician in case there was anything we could do about it. Turns out that this was a complete Godsend of a reaction.

 

This past year, I have had this unnerving paranoia about strep. Though his throat was only slightly red, and he did not have a fever, we asked if they could swab him. And it was positive.

 

So immediately we made an appointment for his little sis and also had her swabbed. The past two times he had strep, she unfortunately had it as well. We thought we had some kind of virus running through the house, so we wanted to make sure we were not mistaking strep for a virus. And her test was negative.

 

Because of no obvious strep symptoms, this made me wonder if James had ever actually gotten rid of his previous strep infections. And made me wonder a bit more about PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections). As the name reveals, it’s an autoimmune condition brought on by strep bacteria that affects the brain. Symptoms include:

 

  • OCD
  • Tics
  • Extreme mood changes
  • Irritability
  • Bedwetting or change in urinary frequency
  • Separation anxiety
  • Sudden onset

 

Check, check, check, checkity check

PANDAS

 

We asked his pediatrician about it, and he mentioned we could retest him for strep after antibiotics to see if they had done their job. A week after we finished the course of antibiotics, we did just that. The rapid test in the office came back negative, but the culture came back positive with Group A Strep. Later, blood work showed that his antibodies for strep were SEVEN TIMES the high number of the normal range, thus indicating PANDAS.

 

Though this was terrifying information, things finally started to make sense. One of the big signs of PANDAS is the sudden onset, often pinpointed to the day that your child turned into a different kid. We are now wondering if he encountered this bacteria, which triggered an autoimmune response, 2.5 years ago. It seemed like overnight my calm, sweet baby boy became angry, aggressive, and completely unpredictable. His favorite songs would bring on screaming and tears. A moment of laughter could turn into rage in a second. We started walking on eggshells waiting for the next explosion. Food pickiness went through the roof and overall rigidity went with it. It felt like we lost him.

 

With all of the changes in his life, including the new baby, move, start of school, and just general age, it was easy to write off these behavioral changes. But deep down, I knew something wasn’t right. This poor child has been so sick, y’all.

 

So we are in the process of figuring out how to restore his health with this new information. Thankfully, we have a good start on this path with his anti-inflammatory diet. We are also under the care of functional medicine practitioners who are leaving no rock unturned. They are taking a completely comprehensive look at him, thinking about how to boost his immune system, seal up the gut lining and blood-brain barrier, and get rid of the strep (which is also likely in his gut). I am SO GRATEFUL. I can’t begin to tell you.

 

Unfortunately, when someone has a disability or diagnosis, it is so easy to write off their symptoms to that disability or diagnosis. “Well, aggression can be part of autism.” “Lots of kids who have autism have GI issues.” Or “sensory challenges go along with Down syndrome.” But why?? What is happening in the body to cause these symptoms? What is the root cause? I am elated to be under the care of people who are looking at what is physiologically going on inside his body to cause these behaviors or symptoms. And I am so hopeful that I’m getting my baby back. Only God knows to what extent his healing is taking place..but it is taking place.

To the Parents of My Former Students Who Have Special Needs

We recently received James’ latest IEP (Individualized Education Plan) report with his reevaluation results and official dual diagnosis- both Down syndrome and autism. The latter I can’t really deny any longer. When I first received it, I didn’t fully read through the report because 1) self-preservation, and 1a) there are only so many deficits you can read about at one time.

 

But it forces me to ask myself some hard questions-

Do these reports ever get easier to read? Why do they affect me so much? Do they affect how I define success? How DO I define success?

 

I guess in a way it’s the ultimate comparison…nobody ever wants to be on that left side of the bell curve, especially more than two standard deviations. It feels like while you’ve been fighting so hard to keep up, you just received a big notification that you lost.

 

So I sit here with the report tossed behind me and my journal in front of me and my sweet boy next to me. When I went to get him from quiet time in his room, he clearly said, “Downstairs, Let’s go. To couch. Want snack.” Completely unprompted. That’s a darn big deal. Those are the moments that don’t show up on reports like these.

 

These reports don’t measure value. They don’t measure joy. They don’t even really measure true growth. It’s impossible for them to show the amount of growth that one strong little boy has made. They don’t talk about resilience or perseverance, about hard work, or limitless love.

 

Oftentimes you wonder if we really need all of these assessments and ways of sorting. I know his teachers don’t define him through these assessments. I don’t define him through these assessments. But it forces us to look at him through that lens.

 

And each time I read one of these reports, I think about my own days as a teacher. I wish I would have had the deeper perspective I have now when delivering these kinds of reports or any kind of assessment about a child, especially one who had a special need, whether it was on paper or not.

 

To those parents of my beautiful former students, I hope I conveyed these things to you, but if I did not…

 

I wish I could tell you how I know how much you worry and how hard you work.

 

I wish I could tell you how I realize just how much you’ve entrusted me to let your baby shine when you can’t be with them.

 

And how much you would prefer not to create waves or go against the grain.

 

How you know how much teachers have on their plates, but your biggest responsibility is to stand up for your baby who is your whole world.

 

I wish I could tell you how your child is far more than any deficit a silly report lays out.

 

And how I pray they find their perfect place in life, that they’re happy, and shine like the bright star they are.

 

And sure, there’s a place for assessment and numbers and data. When used appropriately, they help us plan. They allow us to receive services we need. They help us grow.

 

But they in no way measure the love and purpose your child has brought into the world, through your love and purpose.

 

Nor do they measure the love and work that your child’s teachers have poured in.

 

And they for sure doesn’t measure how hard your baby has worked, how much they have grown, and how they have blessed those around them.

 

Sending you so much love, a big high five, and potentially, a glass of wine 😉

 

James sandbox

 

 

Finishing 2017 in Gratitude

James’ last two months have been interesting! He had a really beautiful three weeks in October, and then something switched right before Halloween. We’re not sure if he was having a reaction to eggs with too many banana pancakes, if he had an issue with the autumn leaf mold…apparently that’s a thing, or if there was some other unknown environmental trigger. But there was a big change- he had lots of eczema and the edginess and irritability returned. And it just stuck. We couldn’t figure out how to kick it, even after removing the eggs, reducing/increasing supplement doses, etc.

 

After about a month of this flare, we decided to ditch the homemade yogurt we had been holding onto for perhaps too long. Though the 24-hour yogurt fermentation process is supposed to just about eliminate any casein or lactose, we thought it might be worth trying. Especially since the first thing anyone tells you to do in most of these healing diets is to get rid of gluten and dairy. We had previously been scared of eliminating the yogurt when he struggled to eat much of anything else, but the lack of progress prompted us to go forward with it.

 

The two weeks following yogurt elimination, we wonder if he went through a little dairy detox. He seemed really unsettled–lots of pacing and extreme mood changes. His teachers reported breakthroughs regarding gross motor development, language, and cognition, but also would share how he needed much more prompting, had trouble focusing, and had more trouble transitioning between activities.

 

Then after two weeks, he seemed to be settling! And open to trying more foods!! Until I watched one too many Hallmark movies with gleeful children and their Christmas cookies, and the mom guilt told me maybe it wouldn’t hurt to give him a bit of organic dark chocolate. And Georgia snuck him more. And then we thought he had the stomach bug. Though as it continued on, we realized it most likely was a reaction. His gut bacteria overgrowth perhaps had a huge party with that chocolate and cane sugar!

 

When he got his appetite back, he strangely requested every carb he could think of… “I want….pasta! Christmas cookies! Birthday cake! Cheerios! Pizza! Pretzels!” Though I was thrilled with all of these verbalizations, many of these things he hasn’t had in over a year. It’s so interesting what sugar can do.

 

So we are still recovering from the dark chocolate incident, but it is indeed improving. And I am grateful for the ability to bounce back and to simply know that we can and will bounce back from these hiccups by God’s grace. We’ve come to the realization that we’ll always need to be careful, and food is probably always going to be a bit of a challenge. But then I think about where this journey has taken us so far.

 

Things that may not have happened if we weren’t on this journey:

 

  • Thomas just finished his second course in his post-masters certificate in human nutrition and functional medicine.
  • James has gone from a little boy who used to catch every virus that was near him to rarely being sick (from viruses ;)..maybe from food one day!)
  • I’ve shifted my mentality from germ avoidance for my family to equipping the body to fight off germs through diet, vitamins, and a healthy environment.
  • Through a few close friends and their gentle guidance, I’ve learned the importance of taking care of myself, which makes setbacks much less scary and more like opportunities to problem-solve, learn, and grow.
  • I’m getting the opportunity to interview and learn from truly incredible guests on the upcoming podcast.
  • I’m watching my daughter turn into such a caring, empathetic little human.
  • We’ve met countless amazing people I’m not sure we would have encountered, if not for this path.
  • I’m completely humbled by the fact that you, dear reader, care enough to take the time to follow James’ story. ❤ Thank you.

 

 

I know there are many more, but I’ve already gone on longer than intended, per usual.

 

Wishing everyone many, many blessings in the upcoming year. And even more importantly, the perspective and mindset to see the blessings, even through the setbacks!

James Georgia Christmas

10 Things We’ve Learned in Helping Our Picky Eater Accept Nourishing, Whole Foods

I’m writing this post with the disclaimer that we still have a ways to go in terms of my son eating non-preferred foods and sealing up his gut lining.

BUT…six months ago, I had a child who literally ate quinoa pasta for dinner every single night. I kid you not. Every night. And who would only eat raw tomatoes and cucumbers in the veggie department, which flared his eczema. And who had eaten meat maybe five times in his life. I used to cry after any kind of nutrition/functional medicine appointment, because I knew he would straight up refuse anything I was told to feed him.

Now he’s expanded his palette to include daily mixed greens salads, chicken, grass fed beef, salmon, carrots, spaghetti squash, green beans, and all kinds of fun things hidden in smoothies. And this week he’s eaten ground beef with shredded carrots, asparagus, and onions. Who is this child??

James new meal
This is now a typical meal for James! And I took the picture after he had finished his spaghetti squash. 🙂

So here is what we’ve learned from our super smart speech and occupational therapists and from trial and error with a cute little boy who between food sensitivities and sensory pickiness gave (is giving) us a run for our money.

  1. It’s not going to be perfect. This one was really hard for me, especially because of his many food sensitivities and reactions. Take it one step at a time- sometimes with steps being weeks apart and oftentimes one step forward, two steps back.
  1. Every small step is a win. Our therapists coached us that when James lets a non-preferred food stay on his plate, that’s a win. He touched it?? Even bigger win. And if he brings it to his mouth, that’s a home run! Usually with enough exposures, we can progress through these stages. Actually eating the non-preferred food might take quite a while, but setting the foundation for him is huge.
  1. Take the pressure off. The more you can pretend to not care, the better it is. If my little man knows I’m watching him, you bet he will refuse whatever new food is on the plate. I try to engage in conversation, sing songs, or even just walk away and let him do his thing.
  1. Cut out addicting foods. This was huge for us. Possibly #1. Cutting out artificial and processed foods opened up the door for more natural alternatives. Cutting out grains for James helped his palette open up even more. Once you cut out the foods that the body is addicted to, it makes way for the stuff you really want them to consume!

These past two weeks, we finally cut out homemade yogurt, leaving ghee, which only has trace amounts of casein and lactose, as his only dairy product. Interestingly, he has also been more adventurous at meals than ever before. He would never dare to touch a green bean or any kind of cooked vegetable for three years, and these past couple of weeks, he has started to eat them with little to no hesitation.

  1. Build on what they know. James loves anything crunchy, so my husband sautéed little shreds of chicken into crunchy pieces using salt and ghee. Once James loved those, we could sauté them less. Then we could transfer the method to beef and eventually salmon. He eats these things easily now, which amazes me when I think just how much he used to despise any kind of meat or fish.

We’ve also recently used this method for shredded pieces of organic carrots, calling them French fries.

  1. Make smoothies. These are so amazing for sneaking foods. He loved banana and blueberry smoothies (and his body tolerated them), so we started there. We could sneak lots of his supplements in these smoothies and eventually started adding little bits of veggies. I wonder if getting a bit of the taste of mixed greens with the smoothies has now helped him to eat them regularly, with honey, of course 😉
  1. Let them play with new foods. I’ll never forget his therapists telling me to let him play with new foods. I painfully took this advice when I introduced bone broth to him, but it worked–

He was not happy to see the bowl of broth with some quinoa pasta in front of him (this was before we cut out grains), but since I knew this was a big step, I let him watch some kid music videos to allow him to relax. And then I walked away. Eventually I saw him picking up the noodles and splashing them in the broth, with the commentary, “splish, splash!” I remained in the corner in the fetal position through this process.

But eventually, he started licking his fingers. And then he started to pick up the noodles and eat them. And 10 minutes later, I saw him scooping up the broth with a spoon saying “yummy!” Totally worth the pool of soup on the table.

  1. Place non-preferred or new foods next to familiar, preferred ones. The familiarity helps take the pressure off.
  1. Think about your main goals during the meal and the factors that could detract from those. For example, using a fork is still hard and intimidating for James. When I give him a new food, I will put it in a bowl with a spoon or just on a plate for him to explore with his hands. If I want to work on utensils, I will give him a food he is very familiar with and enjoys.
  1. Play with colors and fun designs. For some kids, it helps to have a non-preferred food next to a preferred that is the same color. Or to have the foods displayed in a fun way!

Parents of picky eaters, what you have found that has worked for you and your child??

How to Make Ghee

One of the many things I am grateful for in this health adventure is our introduction to ghee, butter’s major upgrade. Ghee originates in the Indian subcontinent and has been traditionally used to promote wellness both as a food and through topical application.

 

It’s rich in fat-soluble vitamins A, D, and E; high in butyrate; and has lots of both short-chain and medium-chain fatty acids. Because the milk solids are boiled out of the butter, it only has trace amounts of lactose and casein, making it allergen-friendly. By boiling out these milk solids and water, you also end up with a rich product that has a higher smoke point and is safer to use for higher temperature cooking.

 

Once you’ve cooked with ghee, you wonder how you ever cooked with anything else. So smooth, versatile, and delicious! By using ghee, we have convinced our picky eater to eat a whole lot of non-preferred foods.

 

It’s a bit on the pricey side, but the good news is that it’s really easy to make. And it’s probably one of my favorite things to make as well. I find the whole process to be therapeutic.

 

The gold standard for ghee is butter made from the milk of grass fed cows, which will give you the most health benefits. You can look to your local organic farmers or find Kerrygold Pure Irish Butter in many popular grocery stores. If you can’t find grass fed better, organic is your next best bet!

 

Here’s a quick tutorial on how to make ghee.

 

You need:

 

  • Two pounds of organic butter or grass fed butter (you can use one pound, but we go through it crazy fast)

**Note-it’s recommended to use unsalted or you will end up with salty ghee! When we didn’t have any other option, we tried salted a couple of times, and it seemed that a lot of the salt boiled out with the milk solids, so it wasn’t too bad! Just be prepared for it to be foamier. 

  • sauce pan
  • wooden spoon
  • sieve
  • several layers of cheesecloth or nutmilk bag
  • 24 ounce mason jar

 

From start to finish, the boiling process takes about 20-25 minutes with two pounds of butter and about 15 minutes with one pound. The first couple of times you do it, you want to monitor very closely, so the butter doesn’t burn. Once you get the hang of it and know what to expect, it’s a bit easier to multitask.

 

Directions:

 

  1. Cut butter into cubes

 

Ghee cubes

 

  1. Heat on medium low, scraping bottom and sides of pan to avoid burning.

 

  1. As the butter is melting, you will notice that it starts to foam.

 

Ghee foam 1

 

  1. Continue scraping the bottom and sides of the pan. The butter will start to boil, and as it bubbles, the foam will begin to clear. Bubbles will become larger and clearer as well, and foam will eventually disappear completely.

 

 

  1. As the butter continues to boil, you’ll notice the foam beginning to appear once again. Very important to continue scraping the sides and bottom of the pan to avoid burning.

 

 

  1. When it looks like this, it’s ready to be taken off the stove.
New foarm 1.4
Foamiest!

 

  1. Let the foam settle for a minute, and then strain the butter through several layers of cheesecloth. I use a nut milk bag, so I just strain it through two layers of the nut milk bag twice- the first time in a glass measuring cup, and the second directly into a mason jar.

 

Ghee strain 1
First strain
Ghee strain 2
Second strain

 

 

 

This is what you’ll see left behind.

 

Ghee strain 3

 

 

  1. Put the lid of the mason jar on loosely until it forms into a solid.
Ghee liquid
Liquid ghee
Ghee solid
Finished product!

 

Isn’t it pretty?? You can leave it at room temperature in a cabinet for up to 3 months or in the refrigerator for up to a year. Enjoy 🙂

 

Bubble Magic

Bubbles are a big deal at our house. James’ speech therapist showed us early on in his life just how much they could do.

 

He would do anything for these glorious rainbow soap spheres.

 

We’ve used them to help him say the “b” sound (reinforced by bubble blowing), sign and say “bubble,” sign/say “more,” eventually “more bubbles.” Then he learned to tell us if he wanted them to go “up high” or “down low.” Practicing the lip control and airflow control to blow them himself. Standing, taking a couple of steps, walking across a room, you name it.

 

Shortly after Georgia could walk, she knew how to make her brother happy by going to the cabinet and getting the bubbles.

 

The one thing we could never get him to do is pop them mid-air. While other kids frantically chased after them, popping in stride, he would watch them with the most euphoric look on his face, every muscle in his body tightened with intense focus. The only way he would pop them is if they landed on the floor or ground, when he felt their journeys were complete.

 

The other day, I tried to see bubbles like he sees them. I tried to look at them with his astute eye and intense focus. Letting the rest of the world fall away.

 

I saw the reflections of the windows drawing in sunlight, interspersed with effervescent rainbows.

 

I saw the images of myself, James, and Georgia, amusingly distorted in the lighthearted way only a bubble could create.

 

I saw bubbles that merged together, joining forces as they traveled whimsically toward their next adventure.

 

I watched them in their unpredictable paths, changing with someone’s breath or laughter or quick wave of the arm.

 

I know James sees much more than that.

 

Why would anyone want to pop them?

 

It’s James’ way- seeing and feeling things on a different wavelength.

 

It’s why when we pray, he doesn’t want to stop.

 

It’s why getting out his icons is the first thing he does each morning.

 

It’s why he reads my emotions like a book, oftentimes before I do.

 

It’s why when we think he’s paying least attention, he shows us that he hasn’t missed a beat.

 

It’s a gift.

 

And sometimes, on hard days, when there’s a royal meltdown when the bubble container closes, I wonder if it is a gift. I know many, including myself sometimes, would call his interaction with bubbles a stim.

 

And I wonder if as his gut heals and he gains more conventionally accepted knowledge and skills, he starts to treat bubbles the way others would- a game, rather than a mystery.

 

I will embrace whatever comes, as it does. But I am grateful for the chance to view the simple things in mystical ways.

 

james bubbles

 

 

 

 

 

 

Chewy Banana Chips

These yummy morsels don’t last long around here. Light, sweet, and just a bit salty. And ingredients you probably have in your home right now.

I started making banana chips when James was unable to tolerate his favorite crunchy snacks and was mouthing everything. The mouthing might be a combination of imbalance in his digestive tract and sensory need for more input. We are learning how these two things often go hand-in-hand.

For the time being, I was looking for a healthy snack with the short list of simple foods he was able to tolerate. One of those trusty foods was bananas.

Most of the banana chip recipes floating around used lemon juice, and the citric acid was a no-go for him. So I attempted to make them with olive oil, and they completely disappeared in a couple of hours. Totally hit the spot. My kids now call them cookies..why not? 😉

Banana chips

The initial goal was to have a crunchy snack, but my family much prefers the chewy. And the chewy sensory input was just as helpful for James.

So here are banana chips with none of the additives you might find in store-bought options!

Ingredients:

3 bananas (not overripe)

2 tbsp olive oil

Sea salt to taste

Directions:

Preheat oven to 200F

Lightly coat olive oil on a nonstick cookie sheet

Slice the bananas into about 1/4 inch slices

Lightly brush olive oil on both sides of the banana slices and place on cookie sheet

Sprinkle with sea salt

Bake for 3 hours, flipping slices after 90 minutes.

Enjoy!