This week marked Jacob’s first 60 days under the care of Dr. Jerry Kartzinel. Our youngest has endured two months of daily supplements, 30 hours of ABA therapy, 12 hours of speech therapy and 2 hours of occupational therapy. The biggest question people want to know — is it making any difference?
Yes. And no.
We see leaps and bounds in some areas, while other areas have remained stagnant. Some of my biggest hopes have not yet been realized. If I think about it long enough, panic starts to set in. The panic of what if things don’t get better, what if things get worse, what if he never learns things that I want him to know, what if I leave this earth and he still needs me. I force my thoughts to stop because I know better than to keep going. I also tell myself it has only been 60 days, but worry and panic linger around like the smell of a homemade meal. Most days are good, but some days are really rough.
What amazes me the most, honestly, are the behaviors that have literally disappeared. Almost immediately, we noticed specific things just stop. Jacob no longer spins randomly in the living room. He no longer searches for small corners or spaces to squeeze into and stay for extended amounts of time. Gone are the days where we would have to block certain walls or Jacob would sit there and gently knock his head against it. The biggest behavior change has been Jacob no longer putting everything in his mouth. Before beginning the treatment plan with Dr. K, most of Jacob’s interactions with everyday objects and toys were through oral sensory. Pages of books didn’t get turned, instead they were used to chew on. The TV remote was like a lollipop. We were constantly canvassing our home for objects he could choke on because we knew they would automatically go straight to his mouth. While some of that was typically developing behavior, it seemed concerning because that’s the only way he would interact with objects and toys. To see these behaviors completely gone amazes me.
Another behavior, usually associated with Autism, that has decreased significantly is the tip-toe walking. It only reappeared sporadically for about 4 days as Jacob fell victim to flumageddon at our home during Spring Break. Other than that, his walking and running is completely typical. We were prepared to see some behavioral regression as he was sick. Countless parents had documented their experiences with regression in the various Autism groups we follow on social media, but I’d be lying if I said it still didn’t concern us. Thankfully, since being flu-free the tip-toe walking has not returned.
We also notice higher levels of interaction and engagement. Some days he approaches Juan with a ball in hand. They can sit together for extended amounts of time and roll, throw or kick the ball back and forth. The belly laughs that ensue from our boy are like gold in our home. While he’s still not pointing at objects that he wants, he will pull on our pants to motion for help most of the time. It can still be a puzzle to figure out exactly what he wants. He displays excitement and happiness when Juan comes home and will follow Juan to the door in tears as he leaves for work. This wasn’t always the case, as Juan could go and come without any reaction from Jacob. It was like he didn’t even notice. While I don’t exactly receive the same amount of excitement nor disappointment from Jacob when I arrive or leave, I can say that he does respond emotionally. We roughly estimate that Jacob responds to his name a little less than half of the time, which is an improvement from zero percent before January. His eye contact has improved, his overall alertness and positive mood has also increased.
If you were to walk into our home, you’d probably see Jacob roaming our house as he pleases. He has a chair in the living room he prefers to sit in, but he tolerates sharing that space with others. If brother or sister happen to be sitting there, it’s not a big deal. If he notices the Netflix or the Disney Channel app appear on the TV, he’s like a soldier getting in formation. I’ve never seen a toddler walk so quickly to his spot as he settles in to watch TV for a bit. He’s not fixated on one particular show or movie, instead he enjoys a variety which makes life easier for us. Like almost all toddlers, his attention to TV is pretty limited. As soon as he’s no longer interested, he climbs out of the chair and starts to roam again. He might pick up a ball and want to engage in play with one of us, or all of us. We are intentional about floor time after dinner, where we are working on goals we’ve created ourselves. This week it’s all about trying to teach him parts of the face. Eyes. Nose. Mouth. Ears. We play peek-a-boo and there is interaction between the two of us. He can only handle about 10-15 minutes of something before he’s ready for a change. We play with stacking cubes and the indoor slide is his absolute favorite. Every now and then we can catch him dancing to a song.
But it’s not all roses and unicorns. I promise. He doesn’t like to take baths, which is a pretty new phenomenon. There’s lots of crying during bath time which annoys the older brother who is usually forced to join him in the tub. One kid crying, with the other kid whining about the crying kid is enough to make me never want to bathe them again. But we do, because stinky children just aren’t cute. His sleeping pattern hasn’t shown any major improvement, despite the 1 mg of melatonin almost nightly. We actually stopped giving it to him because he was still waking up for 1-3 hours almost every night. More than once we’ve caught him climbing out of his crib, and we’re in complete denial about what that could mean for the limited sleep we already get.
There have been no major improvements in Jacob’s overall speech. He has acquired about 5 words: up, dada, mama, agua and lala. Most of the time he doesn’t use them in the appropriate context, he just sort of blurts them out at random times as he roams the house. While Jacob’s speech is limited, he understands what “no” means and has grown accustomed to tantruming at the sound of the it. Full-on flop — kitchen floor, living room floor, bedroom, restaurant, church, car — Jacob Crespo does not discriminate with his tantrum flopping. Speak the word “no” and he’ll show you how mad he can get.
So, what’s next?
We had our second follow-up with Dr. K today. Juan arrived at my workplace for our scheduled phone-call appointment with Whataburger in hand. People who work at a school can attest to the privilege of having a hot lunch delivered to you. For 30 minutes, I went from school counselor to mama. We called Dr. K’s office on speakerphone, and had ready our list of topics, questions and concerns. Our doctor did not disappoint, he was ready for an increase in specific supplements and the introduction of another. His reassurance over the phone was just as soothing as I remember it being when I sat across from him in his office. Our plan was adjusted in the following ways:
- Increase in melatonin from 1 mg per night to 1.5 mg per night
- B-12 shots will be given daily in the AM for the next 5 weeks
- Increase in Omega-3 Fish Oil from 2.5 mL twice daily to 3mL twice daily
- Increase in L-Carnitine from 1 mL twice daily to 2 mL twice daily
- Add 2.5 mg twice daily of Leucovorin (Folinic Acid)
- All other aspects of the treatment plan will stay in place
The doctor did order another round of stool testing to monitor current levels of yeast and bacteria. Our next follow up will occur in about 5 weeks. We begin the adjusted treatment plan tomorrow.
We have remained 100% consistent with Jacob’s gluten and dairy free diet. To his credit, Jacob will try new foods and eats a variety of things already. We’ve purposefully have tried more anti-yeast recipes and foods (yes, there’s such a thing!) to combat the yeast overgrowth his initial lab results showed. Instead of bananas, we give blueberries. Instead of organic rice, we use cauliflower rice. I cook brussel sprouts and blend them into mashed avocado and he can’t even tell.
I have to remind myself that none of this was promised to be easy. In the bubble of our home, Jacob is a happy and healthy 2-year old. It’s not until I compare the behaviors and milestones I see other parents proudly display (as they should!) on Facebook and Instagram that I’m reminded of our daily challenge. It’s not until we go out in the world where I’m faced with the discrepancies of what my son can do and other kids his age are doing. It’s easy to see what’s missing rather than focusing on what’s there. I know there’s so much to be thankful for because there’s so much Jacob can do. It’s an intentional practice of focusing on the positive rather the negative. Our hope for Jacob remains as strong as ever. Who knows what the next 5 weeks will bring.
Signed with love, Kat.