One of the areas that I struggle with the most, in regards to raising Corrigan, is discipline. Though we have not had the opportunity to take another look at his brain, experts on Corrigan all agree that his neonatal crisis has clearly caused some brain damage. Each hyperammonemic event since the first has had the potential to further damage his brain, though we believe that each and every event, subsequent to the neonatal one, has been handled so quickly, and Corrigan’s body responds so rapidly to rescue meds, that the impact has been minimal, if at all. Though honestly, we have no way of knowing.
His disorder also causes an elevation in specific metabolites. In Corrigan’s case (Citrullinemia) the metabolite is citrulline. In other Urea Cycle Disorders the metabolites are different. Currently there is no treatment for elevated citrulline. For good reason, the spotlight and urgency has always been on keeping his plasma ammonia down but none of our doctors have shown any concern about elevated citrulline. Could the excess citrulline be at the root of Corrigan’s behavior changes? Maybe. Maybe not. I am not really fond of the unknown, and I am certainly no expert, but this is a rare disorder so the answers aren’t always easy and it takes time to do competent research (Not to mention funding. Donate to the NUCDF? Your donation could save Corrigan’s brain!) Some amazing researchers and crusaiders for UCD’s are working hard to find answers to a lot of questions about Urea Cycle Disorders and the brain. Meanwhile, many of us are left waiting, and wondering why so many of our affected children have similar learning difficulties and behavioral problems.
How do you discipline a child that may be displaying certain negative behaviors but those behaviors could be due to his disorder? Years ago, a metabolic doctor told us that even with plasma ammonia numbers that are “normal” for a child with UCD, that number is often still double what is normal for someone that does not have a Urea Cycle Disorder and he went on to describe that ammonia as a constant “itch” or “agitation” to Corrigan’s brain. Imagine trying to concentrate if your brain “itched.” Imagine controlling your temper if you cannot speak in more than two-word sentences, and Mom doesn’t understand you want to watch Mighty Machines and instead she puts on Dora, and your brain is being agitated by ammonia? Now add in an elevated metabolite to the mix. Kaboom!
A month ago Corrigan’s labs came back nearly perfect, but with an odd doubling of his “normal” level of citrulline. He averages in the 1600’s (normal is ( I think) in the 0-67 range) but his jumped well over 3000. In the last few weeks we have seen changes in his personality in that he seems extra frustrated at times, prone to more strong outbursts and a general inability to stay on task for his usual periods of time. His last set of labs, a week or so ago, show that those levels have gone down a bit but not much.
However, here is my conundrum. Some testing results from downstate and assessments that I was shown at yesterday’s IEP meeting have placed him, developmentally, in the 20-24 month range. He is, chronologically, nearly four years old, but developmentally is only two years old. Coupled with his inability to communicate on more than an 18-month level (in both expressive and receptive areas) it would not be a surprise that many of these recent behavioral changes could simply be that Corrigan is entering the “terrible two’s.”
When I was pregnant with Corrigan, I signed up at babycenter.com and joined the birth month group for May 2008. Dozens of those same women are still chatting amongst themselves as those May 2008 babies are entering Preschool. It is a wonderful way to share the journey together but when it became clear that Corrigan was slipping behind his babycenter peers, it was too hard for me to log in and join in their conversations. There is no way on Earth I could peek into the May 2008 group right now. I am sure those kids are probably getting their driver’s licenses and speaking fluent Madarin Chinese-and my little man can’t even take off his own shirt.
But what if I bumped back a few years? What if I moved to the May 2010 group? Those precious peanuts are all turning two, the same developmental age as Corrigan, and maybe I could see what behavioral issues are popping up with those munchkins.
I didn’t get far, page one in fact, before I saw this…
“Is my May 2010 baby the spawn of Satan?”
The mom went on to describe a toddler that would not listen, whose moods turned from happy to sad in an instant, and whose temper tantrums were epic. Her post had dozens of responses that started like this…”OMG I COULD HAVE WRITTEN THE SAME POST!”
I poked around some more…
“Our little guy will be two on May 30….he is our only child. In the last couple of months he has gotten progressively worse in terms of tantrums and temper. It seems like he’ll get “mad” on a dime. A lot of times if he doesn’t get his way, he begins whining/crying/yelling, then many times screaming and he’ll find something to hit or he’ll throw something. Since this is my first….I’m wondering if this is normal or if we have a child with a temper problem!“
Oh my, the mothers commiserating in this post made me smile. “Me too,” I thought. “Me too!” Heck, my neuro-typical 15-year old gave me some fits during his “three’s” that baffled me.
Another shared…”My son doesn’t listen to me worth a flip. He is SOOOOO bad for me! I just don’t get it. I spend all day saying no, put that down, step back from the tv, don’t climb on that, put that down, don’t touch, play with your toys…. ahhhhh is anyone else’s kid this naughty or am I the worst mom in history“
Oh sweet Mama. No. No you’re not the worst mom in history. And neither am I.
I am reading “Positive Discipline for Children with Special Needs” and am taking notes. Even if there are sneaky, invisible metabolites causing behavior issues for Corrigan, those behaviors still need to be addressed and I need a ton of guidance on how to handle this issue in the best way possible. I don’t want to punish him for things he cannot control, but a temper-throwing four-year old is nothing compared to a temper-throwing ten-year old. He has the strength of a preschooler and the mentality of a toddler and I have to help guide him through this in the safest, most helpful way that I can.
I need advice.
Do you have any?