I have a nearly 5 year old by with low tone &
sensoryNumbness and tingling integration
dysfunctionBasal ganglia dysfunction
Carpal tunnel syndrome
Causes of sexual dysfunction
Chronic fatigue syndrome
Dysfunctional uterine bleeding (dub)
Ear barotrauma
Erection problems
Female sexual dysfunction
Femoral nerve dysfunction
Orgasmic dysfunction
Sciatica. He’s had intervention since infancy, is currently in OT. He has been quite late with almost all his gross motor skills (never crawled, walked at 22 mo etc) & now tests mostly 8-10 mo behind. He is intelligent, insightful & has excellent verbal skills. He’s enjoying his 2nd year of pre-K, has friends, his behavior is mostly age appropriate. He’s never been in daycare.
He utilizes a scheduled potty break during his short pre-K mornings to urinate & has not had an accident there since turning 4. In public he does okay as long as I take him to the bathroom every few hours.
At home, though, he often goes through multiple underwear/day unless I keep after him. I ask him to go when he gets up, after meals, 1-2 times between meals, bedtime. He usually resists, to varying degrees. I insist when he'll be away from a bathroom for a while, when company is visiting, or when I know it's been too long & he's probably had an accident. Otherwise I have lately been just reminding him, thinking he needs to learn to feel the need. His problem applies to bowel movements as well, he has never been
regularRegular insulin, often goes multiple times a day. He tries to hold his bm and is currently on a Rx
laxativeLaxative fiber
Laxative gentle suppositories
Laxative overdose because of a
fissureAnal fissure. I’ve tried periods of downplaying it all & also not asking him (to let him go on his own), both led to regression back to diapers. I’ve used a timer,
handHand or foot spasms
Hand tremor signals etc. but they don’t improve his cooperation. He responds same to other adults. I’ve tried many training methods and rewards but none get us past this stage. He has a reward bag for when he has stayed clean & dry all day & he is so proud when he earns a book or toy! He seems to want to do it. Even six months ago I wasn't sure he was interested, but now I am.
He will sit wet or soiled until someone notices & then gets angry when we say he must go potty & change. When asked he says he “doesn’t feel it coming out.” At times he is genuinely surprised his underwear is soiled. Or he has to look at his pants to see that they’re wet. But he can hold it for hours in public, sometimes tells me we need to find a bathroom, and at home he hides in another room to soil his pants. Seems contradictory to me.
Once he is at the toilet he will try to go, much of the time w/o further intervention. He just won’t initiate the process & often (forcefully) refuses. His OT suggested using an auditory cue when we’re away from home, then at home once he’s used to it. So far it hasn’t worked. I don't know what else to try with him at this age & cognitive ability.
For over a year I've kept thinking he's on the verge of being trained but then it doesn't happen. Does this sound like immature motor control, strength or motor planning? A control issue? Avoidance? His main compensatory strategy is avoidance. Are other low tone DSI kids like this? I can only find info about kids on the PDD spectrum, which doesn’t apply. Your thoughts, please.
Thank you for your encouragement, I'm glad you think I'm on the right track dealing with him because for the last several months I have really wondered if I should be doing something more but honestly I'm exhausted from almost two years of toilet training now, and I get concerned sometimes that there is too much emphasis on a daily basis as it is.
What would specialists be looking for, just physical abnormalities in general or are there specific problems that present in some children? I will ask at his 5 yr appointment about it although I do not know if our insurance (military) will allow us to see pediatric GI/urology, at first anyway. I do not wish to put him through more tests & exams than necessary as he has already been through many tests & procedures and is very wary (I could even say afraid) of doctors at this point.