SPD and Restroom Issues

by Shannon K
(Houston, Texas)

PLEASE HELP ME! My daughter just turned 4 and is still having toilet issues. She has bowel held since she was 18 months old. She has really good days and then we will go days with accidents all day long. I am at my wits end and dont know what else to do or who else to turn to. She was diagnosed with SPD and now her therapist is telling me that she does not think she has SPD (because she cant replicate the "behaviors" we are reporting). Just a little background on my daughter...

She has bowel held since she was 18 months old
She is TERRIFIED of water in her face and eyes. This makes bath time VERY difficult.
She has tantrums seemingly out of NO WHERE.
She moves NON STOP

She will cover her ears at loud sounds and tells me to make it stop or will have a melt down.
She prefers to play alone or side by side play. She has few friends and always seems to gravitate toward a younger quiet child than the girls her age.

Always wants hugs or "Squeezes" as she calls them.
Her therapy is for 45 minutes once a week. They have done shaving cream on the face (and then wiped it off) which does not show her reaction to water. They do the ball pit play. Which she tolerates very well. They have done the swinging and the zipline. All things she loves (really anything that has her moving she would do ALL DAY LONG). Finger painting they did last week and she touched it twice and said "OK I am done". The therapist said this was normal (which I am questioning because I was a daycare teacher for 5 years and NEVER meet a kid who didnt get covered in head to toe when we would finger paint).
I have asked her OT what we can do about the bowel holding or to improve the bowel function. And the response I keep getting is "I just dont know. I think she may be manipulating you". I am NOT in denial that my kid can work me. I know she can. It is something I am working on as a parent but to say she is manipulating me with her bowel movements seems absurd to me (plus she started the holding at 18 months old and that is just not old enough to realize "Hey I can get a reaction out of momma if I dont poop."

PLEASE help me. I dont know what to do at this point. I was so excited when I thought we had answers and we were going to get help. Now it seems like the OT is ripping the rug right out from under my feet again.

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Jan 12, 2013
restroom issues
by: Anonymous

T. is 8 years old. He calls it "my little problem" when he soils his underwear with poop. The family dr. recommended giving him a capful of
miralax in a glass of juice once in the morning and once in the evening. We are now down to once a day and T. seems to have fewer incidents. The way it was explained to me is that his bm becomes like a cork and there is liquid seepage around it. Since we have begun this regimen there have been fewer and fewer incidents of his needing to run down stairs and change his underwear.

Jan 10, 2013
Bathroom challenge
by: Anonymous

I really feel for you. I agree you might want to try another pediatric OT. Therapists are like a pair of shoes, some fit & some don't. Perhaps there is some Autism spectrum disorder as well. May want to ask your pediatrician for a psychologist referral who specializes in children and sensory issues/autism. My son (now 7) sounds just like your child. We just hung in there and it was VERY HARD. He finally got it by age 5. He does now do #2 in the toilet, wiping is still hard. I make him clean up the mess and have him put his undies in a plastic bag for the laundry or sometimes we just throw them away. I stay flat faced (no emotion) and don't talk to him while we are in the bathroom together (again, really hard to do but it works best for both of us.) He also takes a fiber gummy every day to help w/bowel movement. I wish I could give you a hug. Stay strong and be the best advocate you can for your child, you will never regret it! If insurance is an issue, see if places will take a reduced rate fee or payment plans.

Dec 27, 2012
potty problems
by: Anonymous

I agree with other post. If you can get another OT evaluation maybe from another provider. My son is 4 and 1/2 and we are still working on potty training. He will go pee if I "make" him but will not go poop. He still wears diapers because he will not wear underwear (too uncomfortable-part of the SPD). OT is helping with that. We see an outpatient therapist for the anxiety that goes along with SPD and to help him regulate his emotions. That is helping tremendously. She suggested we start with just having him sit on the toilet with his pants still up, once a day for a couple minutes. Then progress to pants down but diaper on, etc. There might be some manipulation going on, there always in when it comes to potty training but it does sound like it's mostly sensory or a fear/anxiety. Good luck. Don't give up until you find someone that listens to you.

Dec 10, 2012
Bowel Issues
by: Anonymous

It sounds like you need to find a new OT. These behaviors definitely sound like SPD.

When my daughter's sensory issues "flare" it seems there are always related bowel/bladder issues. We have had some success with reward charts. You could also try setting a timer for two-hours increments and having her try to go everytime it goes off.

My daughter also had withholding due to constipation. If constipation has been an issue in the past, a child will withhold out of fear. So, if that's an issue, it has to be addressed first. For us, dietary changes have been a huge help in that area.

Though we have never tried it, I had an OT tell me once that there is listening therapy specifically targeted at bowel/bladder issues. It might be worth pursuing if these issues are having a significant impact on your life.

All the best to you as you look for resources to help your daughter!

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