What It's Like....

It's hard to reconcile having a child who is so sick, when on his great days he looks like this.... But things continue to go downhill in the land of the belly blues, and we are grasping at straws for answers. What we know at this point is that Max has something called Food Protein Induced Enteropathy, and maybe a little of what is called FPIES (Food Protein Induced Enterocolitis). What that means is that his belly is fighting off food proteins like they are the enemy. His belly can't absorb them. And when the level of "toxins" gets too high, he vomits. And wakes up ten times a night screaming.

At this point, we've eliminated his known food allergens (dairy, egg, tomato, beef, tree nuts). We have also eliminated soy milk and soy products, because we saw that his symptoms got worse from soy. We have now eliminated all protein, as well as rice and rice products, because kids with these disorders seem to react the most to turkey, chicken, rice, all grains, green beans (legumes in general) and well, everything really.

So what's left for Max to eat. Ummm, nothing.

I have a huge amount of respect for our team at Stanford Children's Hospital. We now have a small army of doctors working to put the pieces of Max's puzzle together. The two GI doctors/allergist/nutritionist/and feeding therapist are all making themselves available 24/7 to help us figure this out. So when they told me yesterday that they feel strongly that he needs to be on his special Neocate formula ONLY for at least a week, of course my first thought was...

ARE YOU FUCKING KIDDING ME?

How in hell do you explain to a very verbal toddler that he can no longer eat solids?? How do you un-do sessions of feeding therapy/OT? It's taken a YEAR to get this child to accept anything from a spoon! I seriously cried last week when he actually ate three bites of chicken, because I was so overjoyed. I bring snacks everywhere. I offer food constantly. I let him touch/taste/smell all sorts of foods because that's what you do to help a child who won't eat. And then we had to start removing foods that he was allergic to. And I panicked. But I figured it out. We could replace his beloved cheese with rice cheese. He could have turkey meatballs instead of beef ones. When a mom at playgroup started waving crackers around for her kid, I could bust out some dairy/egg/soy free ones. We were making it work.

And then Max got worse. I found some wonderful support on an online forum for parents who have kids with food allergies, and they started making some interesting points. "Your son is SICK. Who cares if he knows how to eat with a fork if his belly is so sick that he feels terrible all the time?" In other words, getting three bites of chicken in his mouth is not a "win" if he's barfing five times in one day because he can't handle it. His body is telling us he needs to try Neocate only.

So how do we do this? Well, we've done a modified version of it for the past few days. I'm telling myself that it's to get him used to it, but really, it's to get me used to it. He is getting all of his nutrition from the Neocate formula anyway. Of course, the goal is to bring him back to "baseline". This means that he needs to have about a week of feeling better before we can introduce solids again. And when we do, it's going to be one single-ingredient food at a time, for a 5-7 day trial each. Once we know that food is "safe" it's considered a "pass", and we move on to the next food. Anything that he starts reacting to is considered a "fail", and we take it off the list for now.

I would love to know what his baseline is. On Christmas Eve he threw up 5 times, and then slept through the night. We're assuming that it was because his belly was empty, but it's also possible that the poor little guy exhausted himself. Two days later he started having great naps because we were only doing formula in the morning, and skipping solids for breakfast. Then last night was terrible again.

The thing about FPIES is that reactions are often delayed. In other words, my food log says that he threw up after eating green beans, but it could actually be that the banana from breakfast was bothering him. And kids with FPIES can react to ANYthing. Like all grains. And fruit.

And since our old pediatrician clearly MISSED THIS when we would bring him in and say that he was vomiting/rashy/couldn't sleep/and so on, we are now having to trial foods at 19 months old instead of at 6 months old. Which would have been SO much easier.

The other scary thing about this, is that kids with FPIES sometimes vomit to the point where they become lethargic and dehydrated. Not many of you know this, but there have been two times that I have had to call 911 after Max vomited because he suddenly became lethargic/sleepy/very sick. The first time we were at the park with some friends. Max threw up out of nowhere, was hysterical, and then pretty much collapsed against me. I sat with him for a while in the car, cleaned us up, tried to put him in his car seat so that we could drive to the doctor....no go. He wasn't acting like himself, he was so out of it. I took him back to the blanket where our friends were sitting and he slid down my lap and lay on the blanket with a blank look on his face. This is a child who usually doesn't stop moving. He never falls asleep on his own, much less in the middle of the park when it's not even nap time. I felt like an insane mother, but I was terrified. When his eyes started to roll back in his head for a split second, I called 911.

Kids with severe GI issues often get to the point where they almost pass out from what is happening in their bodies. Thank god we have only seen this happen twice. Thank god Max usually bounces back from vomiting/feeling sick pretty quickly. But as things continue to get worse, we don't know how his reactions will evolve. All we know is that they're not stopping.

It feels like we have crossed the threshold between "Max has food allergies and it's ok because we're dealing with it and he'll be fine" to "Now we have no idea the extent of what is happening in his body, but we know it's more severe than just food allergies. It's a major health issue, and it's going to take some major strategy to treat this."

And yet, our little dynamo still smiles like this....

Best Buds....Then and Now

Tis the Season for sharing some Christmas cheer with my best buddy Jack! We've started a little holiday tradition....check out how small we were LAST Christmas!

It's funny, last Christmas I was so little that I didn't want to sit still for too many pictures....

But THIS Christmas, well.....
Last Christmas I made friends with Rudolph....

Hey reindeer! Remember me???

This Christmas, Jack and I are big enough to REALLY be best buds. This is what best buds do...

I love you too man!

Jack has this cool car that he likes to cruise around in, but he needed me to help him fill it up with gas.....Thanks for letting me go for a ride buddy!

You want me to turn the GPS on how?

Now hang a right up here at the Christmas tree....

As you can see, Jack and I have lots to do when we hang out. Having such great friends is the true meaning of the season! We love you Weiss family!

Come On In

I've written, erased, re-written and back-spaced this post so many times. I'm so torn on what I want to say. Some times I sit down to write WE ARE LOSING OUR FUCKING MINDS. THIS IS SO HARD. I AM HEARTBROKEN FOR OUR LITTLE BOY, BECAUSE HE WON'T EAT, WON'T SLEEP. WE HAVE NO IDEA WHAT ELSE TO DO. OUR LIVES ARE CONSUMED BY DOCTOR'S APPOINTMENTS AND BRAINSTORMING HOW TO HELP HIM FEEL BETTER. NOTHING IS WORKING. HE HAS THROWN UP IN THE GUEST ROOM, THE LIVING ROOM, EVERY TOILET, AND TONIGHT IN MY HAND. WE HAVE BLANKETS AND SHEETS ROTTING IN THE LAUNDRY ROOM BECAUSE WE CAN'T KEEP UP WITH ALL OF THE LAUNDRY. EVERY TIME WE REJOICE THAT HE FINALLY ATE A MEAL, HE THROWS IT ALL UP. THIS IS WHY I DON'T EMAIL YOU BACK. THIS IS WHY YOU NEVER HEAR FROM US. THIS IS WHY WE MISSED YOUR CHRISTMAS PARTY AND I CRIED THE WHOLE NIGHT BECAUSE YOU ARE SUCH DEAR FRIENDS AND I REALLY WANTED TO BE THERE. TO BE IN THE LAND OF THE LIVING. TO DO NORMAL THINGS BECAUSE THAT'S WHAT MAX DESERVES. HE DOESN'T DESERVE SLEEP-DEPRIVED PARENTS WHO YELL AT EACH OTHER BECAUSE THEY'RE EXHAUSTED. I SPEND EVERY FREE MINUTE READING ABOUT REFLUX, ALLERGIES, FOOD REFUSAL. I TALK TO HIS TEAM OF DOCTORS NUMEROUS TIMES A WEEK. WE LIVE, SLEEP, EAT AND BREATHE TRYING TO FIGURE OUT HOW TO MAKE HIM FEEL BETTER.

WOW. And then I delete all of that and write that even with all of those things, we are blessed with the most phenomenal little human being on this planet. He makes these great little faces that say more than any words could. He is so dramatic, and animated, and we literally laugh out loud at how funny he is. I love every minute with him. For a kid who doesn't eat and doesn't sleep, he's so good natured. Even mid-tantrum in Target, he stopped, gathered himself, smiled widely and said "Hi!" to the nice lady that was walking by. He's a charmer this guy. And he's everything to me. He is my whole world. He is the best part of every day. I love singing him the "broccoli-woccoli" song when I'm trying to get him to eat. I love how messy his curls are when he wakes up from a nap. I love how he tucks his little head into my neck when he's sleeping next to me. I love how he calls out everything that he sees when we're driving in the car. I love that he is mine. Health issues and all, I wouldn't want any other baby boy in my life.

This is our dichotomy. Frustrated and helpless from not being able to figure out what is wrong. But filled with so much joy and love because we have this amazing little person blossoming more and more every day.

Now back to our regularly scheduled programming:

Omeprazole twice a day for reflux. Gastrocrom 4 times a day to "inhibit mast cell production and decrease the allergic inflammatory response". Never mind that I thought the doctor said MASS cell production, and that Gastrocrom sounds like the coolest new restaurant in San Francisco. Dr B says that she's hoping the Gastrocrom will be our "miracle drug".

Yeah, me too.


Dr. C, our GI doc, is now teaming with Dr. B to try to figure our little Max out. As he put it, "two heads are better than, well, nothing I guess".

We see an allergist, a nutritionist, two gastroenterologists, an occupational therapist/feeding specialist, and as of this morning, we are begging for a referral to the Sleep Disorders Clinic.


We are desperate.


How is it possible to have such an amazingly bright, happy little boy during the day, and yet he feels so miserable at night? How is it possible for Max to have so much energy, and yet eat so little solid food that his weight is now dropping? How is it possible that we have cut out a billion food groups and he is still throwing up? As Dr. C said, "Wow, if we keep getting positive allergy tests, than at some point he'll only be eating air".

Not funny.


There must be an answer somewhere. Every time we drive around in the pouring rain at three in the morning, with that adorable little face peeking out from underneath all of the blankets in his carseat, we ask ourselves a million questions about what we can do to help him.


But for now, we remain in crisis mode. We are cancelling plans for holiday parties, dropping out of play dates, doing anything we can to protect and preserve every spare minute for successful meals and substantial naps. Now don't get me wrong, we're still having fun. Just sticking close to home while we get everything sorted out.


It's easier to get Max to eat when he has the space to do this..... Thank god for coconut milk yogurt....and it's blueberry! The best part about this? He looked me straight in the eye, took a big spoonful of yogurt, and placed it VERY CAREFULLY in the center of his forehead. I was laughing so hard that it only encouraged him, and of course it only got worse from there!

As you can see, many meals are punctuated with what I call "the fishy face"....

Now that Max can use a fork, it's helped tremendously with eating. Why? Because forks are REALLY fun when you're 18 months old.

Though sometimes it's still easier to just use the good ol' hand to mouth method!

So just in case you're wondering, we're still here. Sitting around the dinner table, singing songs about noodles and cutting the crusts off of PB&J. I'll email you back as soon as I get this kid cleaned up......

Fashion Plate

A normal part of the developmental process for children is playing dress-up. You know, playing pretend......That's why Max is wearing my bracelet and a winter hat that is two sizes too small, all while attempting to send a fax.

Don't worry buddy, I won't let anyone see this picture at your wedding. I promise.

At least he finally found a hat that fit...
This one looked better on the catwalk though....

Happy Chanukah!

Tis the Season for my Mommy to finally update my blog! Geesh!

This year, I celebrated Chanukah in style. Of course, I'm big enough now to really GET what Chanukah means. It means that Jason and Rick come over and we make latkes! OK, not really. It means that Rick makes jelly donuts! And I get presents!

What did you say Mom?? Tell them what I really learned about Chanukah? Fiiiiine....

Chanukah is about being grateful for our blessings. It's about the triumph and perserverance of the Jewish people. It's about family. And if you ask Mommy, it's A LOT about watching the look in my eyes when the candles were lit, and holding me as she sings the blessing over the menorah. It's including me in the tradition of saying "Happy Chanukah" when the blessing ends, and everyone in our family getting a kiss and a hug. Mommy sings me some Chanukah songs, and then we watch the candles glowing. This was a great spot for me to watch our candles....I liked saying "Oooooo!" and "Kah!" (that means Chanukah).

OK, now back to my presents! Mom-Mom and Pop-Pop sent me this slick new ride!!!! Daddy helped me to put it together....

I supervised to make sure that the wheels wouldn't fall off later. Y'all know how my dad can be with his tools!

Daddy, you screw it in like this!

Are you sure it goes there? You might want to read the directions again....

And there it was, in it's shining blue glory (without the long handle, which Daddy attached later so he could push me around). Let me tell you, I haven't moved from this car since it got here!!!

I'll only let Mommy change my diaper if she pushes me in the car over to the changing table. I do "beep beep" on the horn, and we cruise around the house. Last weekend I drove my new car to the park, and when we got there I wouldn't get out to play! I just wanted to sit in my car! I take all of my stuffed animals for rides. And if no one will push me, I get out and push it myself, and then get back in at my new destination. Today I even gave my car a hug. Yep, because I love it so much. I ride up and down the driveway. Through the kitchen. Down the block. Can you hear me coming?? Beep Beep!

Full of Thanks

We are warriors battling enemy foods. But what really matters? This.....
This family. This amazing little boy, who is so full of light and love. Don't think for a minute that we're not enjoying every single second of him. Every tiny moment when he looks at me with a silly grin, every breath that he puffs on to my shoulder when I carry him upstairs to bed. Max is so dynamic, so full of energy and drama. With facial expressions that are huge and hysterical. And an insight that stuns me and makes me laugh out loud, all at the same time.

A few of my favorite things from the last few days?

Max likes to wake me up in the morning (because he's sleeping next to me) by tapping my chest and putting his face THISCLOSE to mine, and then his little voice says "Hi!". And when I open my eyes, he's right there breathing his little baby breath on me, grinning from ear to ear.

I've been counting down to any transition during the day by telling him "Two minutes" and holding up two fingers, and then "One minute". Of course he has no concept of two being more than one at this point, but I figured it would be a good habit to start. Except now when I say "Max, in one minute we're going to put our jammies on" he says "TWO!!"

I wiggled my nose at him today, and he cracked up laughing. And then put his fingers on his nose and wiggled it. And then when that didn't work, he just shook his head back and forth to make it wiggle.

Amazing, my boy.

So don't ever think for even a second that I am not absolutely in heaven about being this gorgeous, brilliant child's mother. And a wife to this guy...who's pretty wonderful too....
Who cares if you can eat dairy when you are surrounded by such love??

Thankful for the blessings of family. For this woman in particular, whose mothering built the house of love that keeps my own little family warm and safe. I am so thankful for her, my Momma, and for her laughter, good sense, and friendship. She anchors us, and I am so grateful for every visit we share.
And for this guy, Max's Uncle Scottie. For the days that I get to watch him love Max so completely, so fearlessly. His laughter mixes with Max's laughter, and I know that my little boy will grow up completely idolizing him.

Giving thanks. Saying a prayer for the beautiful journey that is our life. Watching my family grow and knowing that our lives are forever changed because of this tiny boy.

We're Not Done Yet....

Beef, cashews, pistachios. Soy.

It occurred to me a few weeks ago that when Max had his allergy testing done, they tested for 10 things....and 3 were positive. So who's to say that had they tested for 10 more, maybe they would find something else that he was allergic to? So they did. And he was.

It just felt like the tip of the iceberg.

Of course Max's sleep had gotten so much better. Tremendously better. Then suddenly, he was up from midnight to 4 am. And we had to drive him around not once, but three times a night.

Of course Max's throwing up was better. Except for the last two weeks, when he threw up 3 times.

So when we met with the allergist and they recommended doing another skin test to re-check his allergy levels, I was torn between not wanting him to have to go through the pain of the procedure, and wanting to get to the bottom of what was bothering him.

20 little skin pricks later, and Max is running up and down the hallways of the doctor's office, with no shirt on, with 20 little dots on his back marking a constellation of concern. Sure enough, there were 3 fiery red welts that showed up.....noting an allergic reaction to beef, cashews and pistachios (tree nuts in general).

Then, at our follow-up appointment with the GI doctor (after a frantic call to the on-call doc over the Thanksgiving holiday), the powers that be decided that the most plausible new piece to our Max puzzle must be that he is also allergic to Soy.


Are you fucking kidding me?

Our latest working hypothesis is this: We took Max off of dairy, eggs, tomato. His little body said "Yay!!! Thank god someone finally figured this out! I feel soooo much better!". And then we started giving him soy. Lots of soy, to make up for the fact that he couldn't have dairy. Soy milk, soy yogurt, soy cheese, soy cream cheese. So Max's little body said "Shiiiiit guys! Now I feel like crap again! No sleeping for me!" And then he said "OK geniuses, while you're at it, not only am I allergic to soy, but to beef, cashew and pistachio". And he finished it off with a "TA!!!"....that's Max's version of "Ta-Da!" that he likes to say. OK, he didn't really say all of those things (except for "TA!"), but if he could've, he would've.

And that's where we're at. Apparently 50% of kids with a serious dairy allergy also have a serious soy allergy. You think dairy is in everything? SOY is in everything. Take a look at the wrapper of the cookie/cracker/lunchmeat you're eating right now. Does it say Soy Lecithin? This makes eating Vegan look like a cakewalk. We're so hardcore here now, those Vegans can KISS IT. Day 2 of the dawning of the soy free world. No change yet, but we'll see how it goes.

Back To The Drawing Board

When I haven't posted anything new in a while, you can safely assume that things are going haywire over here again.

After a solid five or six days of positive changes for Max, we are now back to the drawing board.

The last two weeks have been a nightmare of sleep issues. How is it possible that Max could have been doing so well once we removed all of the allergens from his diet, and then regressed to being even worse than he was months ago??

In a nutshell? There's more that he's allergic to.

Beef. Cashews. Pistachios. And probably soy.

Stay tuned for another post about how we figured that out, what we've been doing in the meantime, and where we're going to go from here.....