Tuesday, September 3, 2013

A Little Toilet Talk

Today is the first day of school. The kids are all excitedly returning to classes, meeting up with old friends, making new ones and I am preparing to foster a new relationship with new teachers. Having a child with a special need, no matter how small, requires good communication with his teachers.
A few years ago while my son (for his privacy, I am not attaching his name to this post) was in Kindergarten, I had to accept the reality that there was a reason I was still trying to potty train my 5 year old, and it wasn't him being stubborn. He was having accidents of the number 2 variety. I had searched online for answers and all I could find was other parents asking the same questions, nobody had answers. It was frustrating, it was lonely and it was embarrassing.
Well, I had to do something and I was certain it was just a behavior thing, so in my attempt to access mental health resources I spoke to a social worker and she told me, before you seek out mental health care you need to rule out physiological causes. Why had it not occurred to me before that there could be something wrong? So off to the family doctor we went, and then we waited impatiently for my referral to the pediatrician, Dr Adlam.
Taking my son to Dr. Adlam was eye opening for me, one of the first questions she asked was if he had been diagnosed for ADHD. He had seen a child psychologist through his preschool for a developmental screening, as he was in the supported development program as a result of a speech delay, and what the psychologists report had said was that my son had been right where he was supposed to be across the board with the exception of his attention span. Dr Adlam's question really wasn't a surprise, although this was another thing that hadn't really crossed my mind as a possibility. She asked me to give him a daily dose of LaxADay, to help get things moving.

That day, we focused on the potty issues, and she diagnosed Joseph with Encopresis. It had a name, and it wasn't his fault. Finally there was going to be progress. Encopresis, put simply, is extreme constipation. The colon becomes so full, that stool begins leaking out. The constant pressure on the colon reduces the childs sensitivity so that they don't feel when they have to go, and often don't feel that they have gone. The strangest part, is that the smell of poo becomes so normal to the child that they don't even smell it anymore. Encopresis, is fairly uncommon, affecting about 2% of children between the ages of 3 and 10, and it is more common with children also diagnosed with ADHD and Autism. Teachers don't usually see this illness because most children affected have accidents at home and not school.

On our next visit to Dr Adlam, my son was diagnosed with ADHD and we began down the long road or finding the right drug. I became a little frustrated as the focus of our appointments seemed to be about taking care of the ADHD, and we barely touched on the bathroom issue that had brought us there in the first place. I was resistent to druging my son. I even spoke to a nutritionist, she gave a plan to help cope with the encopresis and possibly help with the ADHD, but even she did not recommend the restrictive diet that is used by those hoping to forego medication for ADHD. I brought her diet plan to Dr Adlam, who said, it all looks good, except there really isn't enough evidence to justify the ADHD diets.
Meanwhile, there was trouble at school. My son's kindergarten teacher had resorted to letting my son stand at his desk as this seemed to help him keep focused. She expressed concerns that if we didn't find something that worked for him soon he might fall behind in school. Summer came, we kept trying different doses, and a new school year came.
Grade one was difficult. My son had 2 teachers that year who were job sharing, and he got along well with one, but the other was more stern and they seemed to butt heads. I don't really blame her, my sons situation was unique and difficult. There was many a trip to the office that year for both my son and I. Finally, half way through the school year, Dr Adlam prescribed Adderall and it worked. As his teacher put it, when the drug works, you know the diagnosis is good.
There was more good news, Dr Adlam, on hearing that the Adderall was working, said it was time to focus on the Encopresis and I finally understood why ADHD had to be treated first. The hardest part of treating Encopresis is changing your child's behavior, and getting them to really listen to their body, and you can't expect a child who is incapable of sitting still for a bed time story to be able to notice those body signals that have become so subtle. Now, finally we are on the road to recovery.
Last October, we moved my son to a new school and that has made the biggest difference in his recovery. In his old school, his issue wasn't a secret among his peers, they had been witness to his accidents, but in his new school he had a fresh start and a good reason to try harder. The other thing, I get to credit last years success with, is his teacher. I made sure to start things on the right foot for my son by getting in touch with his teacher right away, letting her know about his issues and developing a strategy to deal with it.
Last year, my son had, maybe 2 accidents at school. This was a victory. Tonight, I will print out some information about Encopresis, and write a letter to my sons new teacher so we can enjoy more success.
The Encopresis battle is far from over, it can take years for the colon to function properly, and relapses happen. My son still takes LaxADay daily, and we sit him on the toilet regularly to prevent issues. He has enough sensitivity now that he can feel it coming, and accidents have become far less common.
I decided to write this today, because today I am armed with an answer instead of a question. I hope that this one small answer might make it into the search results of parents asking the same questions I once asked. There is hope, I have been walking the Encopresis road, and the sun shines brightly at the end of the tunnel.
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