Wednesday, March 22, 2017

Momma Bear vs. The Big Bad Doctor

Today, I was not-so-subtly accused of being one of those crazy moms that overreact about everything. Liam finally had an appointment with Kennedy Krieger today. My expectations and hopes were high, which could only lead to my inevitable disappointment.

First, I had to carry my son across the busy streets of Baltimore in the face-numbing wind to 3 different buildings until the security guards finally pointed us in the right direction. An elevator ride and 2 registration desks later, and we finally found the place we were supposed to be. Thank God I left early.

The first exam room was simple enough. A nice nurse. Some vital signs. And a few general questions to prep for the doctor. Then, we were led down a long, winding hallway until we got to the doctor's exam room. At this point, Liam was incredible restless. So, I pulled out my phone to play Liam's favorite YouTube kids channel while we waited.

Within a few moments, the doctor walked in and introduced herself. Then she said, "I'm gonna go get some toys while you wrestle the phone away from him." I gave her an odd look, as I told Liam to say bye-bye to the videos so that he could play. She returned with a dump truck and a few board books. Liam immediately grabbed the dump truck and started driving around the exam room. The doctor looked at me and said, "he can eat and drink, but no electronics," as if it was going to be a problem. I nodded and said "ok," and prepared myself for whatever was next.

After asking me several questions about my concerns with Liam, the doctor started evaluating my son through play. I sat on the sidelines, biting my tongue so that I would not interfere with her assessment.

Once the doctor was finished, she told me that Liam was delayed in expressive and receptive speech. At 30 months old, Liam's language skills were at a 21 month old level. Thankfully, she explained that there were no signs of autism or any other disabilities. The doctor explained that having a speech delay is a risk factor for developing a learning disability later in life, particularly when Liam would start learning to read. However, it was nothing to be concerned about at the moment.

So, what could my husband and I do to help him? Start using more hand gestures or sign language when talking to Liam so that he would not only understand us better, but so that he would also start using gestures himself when he was unable to find the words. Also, use simple phrases when talking to Liam to help him better understand what we expect of him. In other words, when Liam neglects to do something we ask of him, it is possible that he truly does not understand what we are asking.

But here's where things took a turn for the worst. The doctor told us to eliminate all technology from his life, including TV, iPads, phones, and battery-operated toys. These devices are said to discourage language and imagination. The doctor told me we should cut Liam off from technology cold turkey. Was she serious?

And then, I asked what she thought of my concerns with Liam's feeding issues. She said, "that's just normal toddler behavior." I was shocked and angered all at the same time. I would not have made this appointment for my child if I thought there was a chance of this being "normal." I proceeded to describe some of Liam's behaviors so that she would understand my concerns.

After only half-listening to what I was saying, the doctor said, "okay, well Liam might be a little outside of the normal spectrum for feeding then." She said she would write a referral for Liam to be evaluated by the feeding clinic. Are you kidding?! I thought that was part of the reason we were here in the first place! Now we would have to make a separate appointment altogether for Liam's feeding issues?

At this point, I was so angry and disappointed that my ears started ringing and my cheeks grew flush. I did my best to keep my smile glued to my face so that my son would not detect my sour mood. The entire way out of the office and to the car, I fought tears. The whole way home, I focused only on the GPS to avoid my thoughts.

I was so hopeful that someone would finally be able to help us with Liam. But here we were again...with another person letting us down.

Do we follow through with the feeding clinic referral? Or do we let it go, chalking it all up to "normal" behavior? Nevermind the fact that my child had lost 2 pounds in a week or that his ribcage was showing. Forget that my son has a meltdown in the middle of the night because he has hunger pains but still refuses to eat. That must just be "normal."

Thursday, March 16, 2017

This Mom Sh*t is Hard

It's time to get honest. Really, truly honest.

My kids have issues. And yes, I know every kid has issues to some extent. I also know that "it could always be worse." But when it is your kids who are suffering, it hurts your heart in a way that stops your  world from spinning. It consumes your mind and prevents you from focusing on any individual task. Forget doing anything thay requires brain power because your children now occupy every available head space.

Let's start with Maya, my beautiful, smiling 4 month old girl. We have tried 4 different kinds of formula, including the very costly Nutramigen, in an effort to relieve her gastrointestinal symptoms. She spits up after every feed. Sometimes it dribbles out of her mouth while she giggles. Other times, she cries in pain until she projectile vomits, and then breathes a sigh of relief. We've tried Zantac for possible reflux, but saw no relief. And because her symptoms didn't really seem to match up with reflux (aside from the projectile vomiting), the pediatrician basically ruled it out.

Beginning around 6pm every night, she cries and draws up her little legs with abdominal cramping and gas pain. We've tried gas drops, gripe water, and probiotics. All of which only provide temporary relief.

And as for the diarrhea, I will spare you the details. But let me tell you, my husband and I never expected to have so many discussions about the color and consistency of poo.

Aside from all of the GI upset, Maya is a happy, easy-going little girl. All the more reason I feel bad for her. This week, we will be seeing a pediatric GI doctor at Hopkins. I pray she is able to offer us some insight into Maya's tummy problems so this poor girl can finally get some relief.

And then there is my 2 and a half year old boy, Liam. He has had so many struggles in his short little life. He was diagnosed with reflux as a baby and has been on Zantac ever since. We've tried to wean him off several times, but have been very unsuccessful. His symptoms returned within weeks every time.

Liam has always been in the <10th percentile for weight. And we've struggled to get him to eat since he started solids. To rule out anything physical, he had a GI workup at Hopkins, including an EGD and sigmoidoscopy, shortly after turning 18 months old. Everything came back normal, which is a blessing and a curse. Of course we are grateful there is nothing physically wrong. But that leaves us with the harsh reality that his refusal of food is behavioral.

The GI doctor explained that he likely developed a negative association with food due to the pain caused by reflux. Plan of action: add Carnation Instant Breakfast to his bottles to keep his weight up and maximize his calorie intake by adding fats (ex. butter, peanut butter, Nutella) to the foods he will eat. All of which sounded great in addressing his physical needs. But no one bothered to tell us how to address his negative association with food.

As Liam approached his 2nd birthday, my husband and I noticed a whole new issue. Liam had developed his own toddler language, which sounded like a combination of Russian and jibberish. He would carry conversations without anyone knowing what he was saying, and then get frustrated when people didn't understand him.

Our pediatrician acknowledged that Liam's speech was delayed, but assured us that all kids develop language at a different pace. But the more people didn't understand him, the more he started acting out. He started biting, hitting, and throwing tantrums. He would cry because we never knew what was wrong, even though he was trying desperately to tell us.

So I made the call to Infants & Toddlers, a state-run program that helped children under the age of 3 who met a certain set of criteria. They would come to the house to assess Liam and determine which (if any) services he qualified for. I was determined to get him the help he needed.

After the initial assessment, Infants & Toddlers determined that Liam qualified for speech therapy (ST). I felt so relieved! But...what about his feeding issues? He did not qualify for occupational therapy (OT) because he met all the necessary milestones in other areas. I expressed my concern, and was told that OT could be added if Liam was not making progress.

A few months into ST, and Liam was making progress...but very slowly. And because we were still having feeding issues, OT was added to his regimen. It wasn't until OT came to work with Liam that he really started making progress.

After working with him for a few weeks, she noticed that Liam had poor motor function in his mouth. We had to work with him on chewing and moving food around in his mouth with his tongue. She also determined that Liam had some motor planning issues (which I, of course, needed to google). In the most simplistic terms, things that are automatic processes to me, are not automatic for Liam. When asked to do something new, Liam has difficulty determining what steps are necessary to get to the end result. I was shocked no one had figured it out before.

Each week, I learned new ways to help Liam. Not only did he progress in speech and feeding, but also his behavior improved. I was so relieved that Liam was picking up words and trying new foods. Day to day things were still very much a struggle, but at least things were better.

And then my world came crashing down on me. Two weeks ago, Liam started refusing to eat again. He would only drink his bottles with Carnation. He began throwing tantrums, and having anxiety attacks. He woke up multiple times a night, climbing into bed with us. When I tried to take him back to his room, he would cry so uncontrollably that he would start dry heaving. When I asked him what was wrong, he couldn't tell me. He started using more jibberish than real words again. Out of seemingly nowhere, he would cry out "owwww" and hold his belly in pain.

In those 2 weeks, Liam lost 2 pounds and showed significant regression. He no longer wanted to walk and run; he wanted to be carried everywhere. When he was hungry, he would ask for his "ba ba." On the rare occasion he actually attempted to eat, he would chew a few times and then spit the food back out. I was completely at a loss as to what could have happened to spark such a change. And every time I tried to talk to Liam about it, he would refuse to talk, cry uncontrollably, or use his own language so I couldn't understand him.

That was the last straw. I called Kennedy Krieger to ask for an evaluation. Something was clearly wrong with my child. And it was beyond simply having ST and OT come to the house to work with him. After faxing over Liam's records and evaluations from Infants & Toddlers, I was able to get him in next week. I pray they are able to give us some answers. But more importantly, I pray they are able to tell us how to help our boy.

These upcoming appointments for my kids are consuming me. Will these professionals be able to help us? If they are able to determine a diagnosis, what will it mean for my kids' futures? And how am I supposed to go about my daily routine, acting as though everything is "normal"?

On work days, I do my best to put my game face on because I have other people who need me. My patients are scared for their own health, and need me to be a source of calm and positivity for them. When I am home with the kids, I put a smile on and play Supermom. I try to soak up every moment with them, knowing full well that it could all change at any moment. It's not until the kids are asleep and my husband and I get to talk that I allow myself to unravel. Because even Supermom can only be strong for so long.