Not Artistic…AUTISTIC!
Cooper’s stomach issues are returning in full force. Although his demeanor is as sunny as usual he still isn’t pooping. Sigh.
I am doing my part. I am being diligent with increasing his water intake, removing junk from his diet, introducing new foods, etc. When I choose a battle I stick with it. And it’s working. So great.
But as of yesterday he hadn’t pooped in 5 five days and even started waking up in the middle of the night again.
So, that tells me that although diet is important, it still isn’t everything. This is definitely a sensory issue.
I called the gastro doctor back yet and received little to no help. It went something like this:
Kate: Cooper’s constipation is returning in full force. I am improving his diet, increasing his water intake and giving him less milk. He hasn’t pooped in 5 days. The usual dose of Miralax isn’t working. I feel that something bigger is going on here and I can’t watch him be in pain constantly nor can I take him in for surgery every 3 months to have poop removed.
Nurse: So he isn’t stooling?
Kate: (MASSIVE EYE ROLL) Nope, he NOT is pooping. Nor does it appear he is getting a regular sensation to poop.
Nurse: Can you have him sit on the toilet?
Kate: (WHY DIDN’T I THINK OF THAT) Well, actually no. I can’t. He’s severely autistic and will only random sit on a baby potty for few seconds a day. Nor will he initiate going to the bathroom. Traditionally I have to keep him naked but after the Ex-Lax caused him to poop on my new carpet 6 times I am a little fearful of letting him run around naked.
Nurse: Hhhmmmm….Let’s go ahead and increase that Ex-Lax and Miralax daily. Mix 4 scoopfuls with Gatorade.
Kate: Um……….well unfortunately Cooper won’t drink Gatorade. We discussed that on our last call. I can try juice. Also, I really don’t feel like a 5 year old body should be medicated so heavily on a daily basis. Is that really the best we can do? I’ll do the high dose for a day to get him cleared out but I just don’t feel like we can keep going like this.
Nurse: Well, I can refer you from some physical therapy but go ahead and really up the medication and give me a call in 2 weeks.
Sigh.
I feel like I am to the point where I just can’t believe this is the best we can do. Really?
And it’s not like I blame people but come on….I can’t have the first autistic kid that can’t poop. Or maybe other people are just OK with medication being the only answer? I don’t know.
Yesterday afternoon I received a call from a scheduler at the physical therapy office. Also, another interesting phone call.
First, she was very sweet. And very friendly. But, also must live in a bubble.
Scheduler: Hi, this is so and so from so and so. I see that Cooper has been referred here to get some physical therapy to help him stool. Can you tell me a little bit about him so I can get him with the right therapist?
Kate: Sure. Cooper is 5 years old. He had an impaction removed last Friday. He is autistic and nonverbal and it appears he isn’t getting the urge to poop. He also struggles to stay seated on the toilet for longer than 20 seconds and physically push the poop out. It is clearly a sensory problem.
Scheduler: Ok. I can help with that. So he is artistic and struggles to sit down. That’s good to know. I will need to get him in room with a lift so they can move him around.
Kate: Wait. What. He’s not artistic….he’s autistic.
Scheduler: Artistic?
Kate: Autistic! You know…autism? 1 in 42 kids have it. Do you see kids on the spectrum that struggle with constipation?
Scheduler: (Talking to someone else) Hey, do we see kids that are aaaauuuuurrrrrttttiiiisstttic? (To me) Let me put you on hold.
Kate: Wait….he also doesn’t struggle with the act of sitting down. He can freely sit. He just chooses not too.
Scheduler: (Cheesy music)
I was driving home from work at this point and I seriously burst out laughing. What in the world was happening here.
I ended up speaking with 4 different therapists on my 45 minute ride home. Each one got progressively better and more understanding of our situation.
A sense of humor is key my friends. This has all been a learning curve to me. I was thrown into a game where I didn’t know the rules. And when I lose Cooper loses. Those are some pretty high stakes. I will eventually find someone that can help me. I know that. It’s hard to be patient though.
And now we have a new joke at our house…..
Super Cooper The Artist!
As a RN, let me tell you there is no easy solution to any pooping problem. While I don’t have experience with pediatric pooping issues, I worked with adult GI issues throughout my hospital career. It’s 2016 and we really have no better options than more and more powerful laxatives, and that’s it. I know you do enemas already; they can do a more powerful enema in a medical clinic, kind of like a colonic, if you can catch it before an impaction happens. Once an impaction happens, as you well know, Coops would have to have the surgery again.
Autistics are notorious for pooping problems not just because of their limited diet, but because it DOES cause mechanical problems with the bowel (resulting in constipation). There are some meds they can give to adults to make their intestines squeeze more, but I’m not sure these are approved for kids; the two that come to mind are Lubiprostone (Amitiza), and Linaclotide (Linzess). As far as not having the sensation to poop, there is nothing that can be done about it because it’s usually a nerve innervation problem. Your doctors SHOULD know about autistics and all these things…it appears you’ve been unlucky in that regard. 🙁
I’m glad you can laugh at that lady who said your son was artistic instead of autistic, but as a medical professional, I find her lack of information appalling. Maybe she’s new to the job or something.
This is a tough one for you all. I can imagine the frustration in trying to get Cooper the help he needs. Forgive me if you’ve already answered these questions in an earlier post I’m new to the blog I just found it after Instagram.
1. Does he take any medications?
2. You mentioned adjustments to his diet. How severe? This is probably the biggest challenge. My own son has digestion issues too, and making changes to his diet is a mountain of colossal proportions.
3. Have you met with a Nutrition Soecialist? That may be a tall order because of Question 2 and expense. It’s something I am trying to set up through one of Bennett’s benefits. It’s a slog. But then of course there will be IMPLEMENTATION. Another story entirely
i hope you get some answers or at least some help. I know it isn’t easy.
Ken
Ugh!!! Hoping you get a good fix for your little guy. Why do so many in the medical field just want to throw medication at everything? I mean we do medicate our son for ADHD and mood, but good golly – that’s treating the symptoms not the cause. Hugs!
So frustrating! Try removing all dairy for at least 2 weeks. (You could substitute with coconut milk or almond milk) My son was the same way. It was a depressing nightmare till we took out completely the foods that we’re causing problems. I would say by day 7 of all dairy gone we got things working again…dairy causes massive inflammation but can be out of you’d system within 7-14 days. Of course doctors may not tell you that.
Just so you know – somehow the recent blog entries aren’t showing up properly for me. I don’t know if anyone else has this problem. On the topic, WOW — chalk one up for unhelpfulness. You’re right, others must also have this issue — so how to connect with them? I don’t have any answers but I hope you find others with similar issues who can perhaps offer advice.
In many cases, medication is the only option, after behavioral therapies have been exhausted. A GI doctor and pediatrician can only help with medical problems in their scope.
If your little guy won’t sit on a potty, can’t stop moving and is poop holding then it’s behavior. Try consulting with a child psychiatrist that specializes in children with developmental disorders, specifically autism. Keep an open mind about medication. There are people on them for years with positive life-changing results.
jMN is right, the blog is being wonky.
Thank you! I am looking into pooping therapy. 🙂 Just saying it makes me giggle!