Help with a Lurker's Son?

[Deleted]

Dirty Lurker here. I need anonymous advice and maybe a little support. This is painfully long, so I will state my primary questions up front:

Has anyone had experience with non-constipation-related encopresis, and what advice can they give for a 5 year old who has daily accidents?

And also, who has a child with clear issues and no clear diagnosis who can make me feel a little less helpless/useless?

My son is 5 years old. He has a lot of issues that don't add up to a neat diagnosis. Here is a rundown:

• He behaves like classic ADHD most of the time, but we tried stimulant medication and it did not go well (6 straight hours of screaming on two separate medications)
• He obsesses about wanting things to the point of trying to leave any building (and sometimes succeeding) to try and get to Target/his friend's house/wherever on his own. He has completely escaped from school and home.
• But he doesn't care much about how clothing feels, get worried about future events, or need things to be in any particular place. He doesn't fit the profile for OCD or Anxiety Disorder, though he takes Zoloft for anxiety. It helps a little.
• He is a sensory seeker, but shows great self control the majority of the time. He doesn't benefit from his chew toys, seat wedge, sensory brushes, or weighted vest at all any more. We still do some joint compression but that is about it.
  
• He has bad encopresis. Like daily poop accidents. Sometimes multiple. He has been checked for constipation, nope, bacterial growth, nope, toilet fear, nope (though sometimes he freaks out and insists he doesn't need to go, and then has an accident 5 minutes later. Other times he is great and just wants a magazine and some privacy which are always granted).
  
• His sleep is not very good. Lately he goes to bed by 8:30 or 9 with the help of melatonin, but he *always* wakes up before 6. Sometimes as early as 4:45, and is chipper and will not go back to sleep. We have tried putting him to bed earlier (7:30 for two weeks) and he just wakes up even earlier. He naps occasionally.
• When he tantrums, it isn't typical 5 year old stuff. It's violent and lasts hours. He has punched preschool teachers, broken furniture, and is generally sent home at least once a month because they can not calm him down. When he does calm it's like it never happened. When he is calm he is sweet, polite, and empathetic to everyone around him. He is always the first one to help another kid who has fallen or is sad about something. He has never been violent towards another child... only adults.
  
• Nobody can predict his triggers.  Initially people think we just aren't paying attention, but within a month or two everyone who works with him has admitted that there is no predictable pattern. Some transitions go terrible one day and great the next, he may go two days in a row with no accidents, and then the next day have three. 

I know there is a mood disorder, though it isn't popular to diagnose kids his age. What happened when we tried a stimulant pretty much confirms it. He is on a mood stabilizer which helps somewhat, but insurance doesn't want to cover it and I don't think we've reached the therapeutic dose for him yet. The mood stabilizer and anti-anxiety combine seem to be helping a little with everything but the encopresis.

I have no idea how this kid is going to do in Kindergarten. We've told the school he will attend, which is a very hands-on charter which I hope will help. And honestly, I'm to the point where I can deal with all of it except the leaving buildings and poop accidents. We have had to rush out of so many places and events because he has an accident. He doesn't tell us when it happens or seem to care, so we usually find out by smell, which is so fucking embarrassing. We never go anywhere without a backpack of extra clothes, bags, and wipes. We had him on a toilet schedule but he tantrumed every time we enforced it. He will go on his own sometimes, but you can't convince him to try. He claims nothing hurts, he isn't afraid of the toilet and does a good job peeing in it, he just "doesn't want to sit" (I wish I could figure out a way for him to shit standing).  The fact that he still wears a pull up at night doesn't even phase me yet. His 3 1/2 year old sister is completely toilet trained, day and night. We have 0 of the same issues with her.

We've done OT. He has a restricted diet (gluten/dairy free, low sugar, no dyes, etc). He's in BT and has a psychiatrist. He takes medication. We supplement him with extra zinc and iron. We have all kinds of charts, stars, incentives, consequences and we are consistent with them. I truly don't know what else to try.

H is bipolar (diagnosed two years ago, medicated and mostly stable), which doesn't help, but my son's episodes don't seem to correlate with his dad's or get worse when H is down and not very fun to be around. H does not get physically violent, but he does yell and turns into "a dark cloud" when things are overwhelming for him. This doesn't usually phase my son at least outwardly (my daughter is another story) and doesn't increase incidents in him at all or make him extra emotional.  We keep track of this for BT.
 
So seriously... what is left? Everybody is out of ideas. His teachers, his therapist, his OT cut him loose because they couldn't think of anything else to do with him (he had mastered their curriculum for 7 year olds with ADHD). Psych just wants to increase doses, but that isn't magic either. And NONE of this helps with the mass quantities of literal shit we clean up on a daily basis.

Did I mention he's FIVE?

500,000 Internet Points to you if you got through all of this. I wish it were shorter, I really do.

[Deleted]

I've got nothing except hugs. That must be so difficult to deal with. Hang in there, it sounds like you're doing everything YOU can for him.

[mrlittlejeans]

I don't have advice, but I wanted to say that I'm so sorry for you and your son. You guys will be in my thoughts and prayers.

[margotmacomber]

This is so hard.  I only have my BA in psych and I know what I say won't help much.  Have you tried Behavioral Psych?  He is so young, something has to be out there for him.  I would think at least he needs someone on his  caseload that is dedicated and constant.  There is a solution out there, it just needs to be found.  ( hugs )

[Deleted]

Jun 5, 2013 23:34:03 GMT -5 margotmacomber said:

This is so hard.  I only have my BA in psych and I know what I say won't help much.  Have you tried Behavioral Psych?  He is so young, something has to be out there for him.  I would think at least he needs someone on his  caseload that is dedicated and constant.  There is a solution out there, it just needs to be found.  ( hugs )

He does have a Masters-level Behavioral Therapist.  I honestly can't find a pediatric psychologist within 20 miles of us.  He has been evaluated at our Children's Hospital but not accepted for regular treatment.

There has to be something we're missing or not trying.... equine therapy?  I just don't know.

[MWOS]

Forgive me if this is an obvious question, but has he seen a neurologist?

I worry about seizures, especially with the loss of bowel control

[macchiatto]

Occasional lurker here. I'm so sorry you're dealing with all this. I have an MA in clinical counseling and just finished a year of auditing classes in assessing and treating childhood disorders. We did cover encopresis, so I have some familiarity with it and treatment strategies, if not direct experience treating it.

I was also going to ask if you had been able to find a child psychologist or a master's-level therapist who specializes in children. I'm sorry you haven't been able to find a child psychologist close by. Though it might be worth broadening your search a bit if they could help you find some answers. You may be able to go for a limited number of sessions for a better evaluation and to get a treatment plan in place but not have to make a longer drive every week indefinitely.

One of my boys has some special needs (and a lot of these bigger questions of what's really going on, what else could we be doing therapy-wise, etc., are on my mind as i prep for tomorrow's devel pedi appt); I can relate to the frustration when there aren't clear answers. I'm so sorry. I hope you find a break-through soon.

[Deleted]

Jun 5, 2013 23:43:52 GMT -5 MWOS said:

Forgive me if this is an obvious question, but has he seen a neurologist?

I worry about seizures, especially with the loss of bowel control

Not an obvious question at all.  I tried to list out everything, but I could have written another page or two and still left something out. 

One of his evaluations included neurology, but no scans, just eye-coordination tests and questionnaires.  He has never had an episode that looked like a seizure - not the typical muscle tenseness or staring and being still.  The accidents tend to happen when he is actively engaged in an activity.  Either active (running around with friends) or passive (reading, drawing, etc).

What could we ask a neurologist to check?  H has a neurologist and a neuroscientist (because he's a case study now), and mostly they look at qEEGs and MRI data.  The last time I suggested we get an EEG for my son, the neuroscientist laughed a little and suggested we wait until he's 7 and can sit long enough to get a useful reading.

[margotmacomber]

Jun 5, 2013 23:38:44 GMT -5 @mairzydoats said:

Jun 5, 2013 23:34:03 GMT -5 margotmacomber said:

This is so hard.  I only have my BA in psych and I know what I say won't help much.  Have you tried Behavioral Psych?  He is so young, something has to be out there for him.  I would think at least he needs someone on his  caseload that is dedicated and constant.  There is a solution out there, it just needs to be found.  ( hugs )

He does have a Masters-level Behavioral Therapist.  I honestly can't find a pediatric psychologist within 20 miles of us.  He has been evaluated at our Children's Hospital but not accepted for regular treatment.

There has to be something we're missing or not trying.... equine therapy?  I just don't know.

I am so sorry.  I don't have anything close to an answer.  I just want to give you all of the hugs I can.

Everything I type I delete because I'm sure you've already thought of it.  I hope the best for you.

[MWOS]

Jun 5, 2013 23:53:06 GMT -5 @mairzydoats said:

Jun 5, 2013 23:43:52 GMT -5 MWOS said:

Forgive me if this is an obvious question, but has he seen a neurologist?

I worry about seizures, especially with the loss of bowel control

Not an obvious question at all.  I tried to list out everything, but I could have written another page or two and still left something out. 

One of his evaluations included neurology, but no scans, just eye-coordination tests and questionnaires.  He has never had an episode that looked like a seizure - not the typical muscle tenseness or staring and being still.  The accidents tend to happen when he is actively engaged in an activity.  Either active (running around with friends) or passive (reading, drawing, etc).

What could we ask a neurologist to check?  H has a neurologist and a neuroscientist (because he's a case study now), and mostly they look at qEEGs and MRI data.  The last time I suggested we get an EEG for my son, the neuroscientist laughed a little and suggested we wait until he's 7 and can sit long enough to get a useful reading.

Why is your husband a case study for a neurologist and a neuroscientist? That could potentially be very important. I found this online:
Even if epilepsy is a long shot, EEGs are not invasive or painful and it'd be easy to rule this out completely

It may be hard to tell if someone is having a seizure. Some seizures only cause a person to have staring spells. These may go unnoticed.

Specific symptoms depend on what part of the brain is involved. They occur suddenly and may include:

Brief blackout followed by period of confusion (the person cannot remember a period of time)
Changes in behavior such as picking at one's clothing
Drooling or frothing at the mouth
Eye movements
Grunting and snorting
Loss of bladder or bowel control
Mood changes such as sudden anger, unexplainable fear, panic, joy, or laughter
Shaking of the entire body
Sudden falling
Tasting a bitter or metallic flavor
Teeth clenching
Temporary halt in breathing
Uncontrollable muscle spasms with twitching and jerking limbs
Symptoms may stop after a few seconds minutes, or continue for 15 minutes. They rarely continue longer.

The person may have warning symptoms before the attack, such as:

Fear or anxiety
Nausea
Vertigo
Visual symptoms (such as flashing bright lights, spots, or wavy lines before the eyes)

[Deleted]

Jun 5, 2013 23:53:13 GMT -5 margotmacomber said:

Jun 5, 2013 23:38:44 GMT -5 @mairzydoats said:

He does have a Masters-level Behavioral Therapist.  I honestly can't find a pediatric psychologist within 20 miles of us.  He has been evaluated at our Children's Hospital but not accepted for regular treatment.

There has to be something we're missing or not trying.... equine therapy?  I just don't know.

I am so sorry.  I don't have anything close to an answer.  I just want to give you all of the hugs I can.

Everything I type I delete because I'm sure you've already thought of it.  I hope the best for you.

No, please, suggest away!  There has to be something that seems obvious to someone who isn't immersed in it.

I like the suggestion of finding a psychologist farther away and not going weekly - I will look into that.  


Insurance is of course a factor.  I tried to get into the supposedly best child psychiatrist in the state (of which there are very few to begin with) but the $300 med check charges were prohibitive to say the least.

I'm in CO, which has a lot of resources, it really does.  I'm just not finding ones that I can either easily get to or afford.

[Deleted]

Jun 5, 2013 23:58:42 GMT -5 MWOS said:

Jun 5, 2013 23:53:06 GMT -5 @mairzydoats said:

Why is your husband a case study for a neurologist and a neuroscientist? That could potentially be very important. I found this online:
Even if epilepsy is a long shot, EEGs are not invasive or painful and it'd be easy to rule this out completely.....

H is a case study because he is weirdly medication-resistant and has a fun combination of Bipolar and adult ADD that is hard to treat anyway. For instance, he was on Nuvigil for a while because he was narcoleptic during the day, AND Adderal - so basically meth and meth plus. I remember one day he took his meds, drank two red bulls, and then took a nap on the couch. We do suspect our son could have a similar metabolism for medication.

We do look for staring and don't see it, but I will try to be more focused on that and ask him about light flashes or funny tastes - it's a great suggestion. Outside of the bowel accidents and change in mood, he doesn't show any of the other listed symptoms. His mood changes are sudden, but usually happen during a transition. The one thing that may fit here is that when he obsesses about something, like "I want to go to Target and get a toy RIGHT NOW" or "I want to go to so-and so's house RIGHT NOW" (who we haven't seen in months) it seems to come out of nowhere.



And I suck at the quoting... I can't seem to get my text out of your window.

[MWOS]

I've been looking this up and I honestly think it's a good idea to get him tested. There are so many kinds of seizures that may or may not line up with his behavior.

www.epilepsy.com/epilepsy/epilepsy_temporallobe

the "old memories resurfacing" really struck me. I was looking at temporal lobe seizures because another site had mentioned OCD symptoms associated with temporal lobe.

I'm not a doctor, though. I don't even play one on the internet anymore. I hope more than anything you get some answers soon. You and your son will be in my thoughts.

[litebright]

Okay. Let's start with the basics. I'm in CO, too, BTW.

Has he been evaluated by the school district? Does he have an IEP in place and/or educational dx for services? Is your charter on board with that? I'm kind of surprised you're opting for a charter with these behaviors -- I also wouldn't be surprised if they bounce him back to the public school district. They are legally able to do that if they can't meet his needs, and many of the charters are pretty upfront about the fact that they have minimal staff for kids with SN. I kind of wonder if he wouldn't be better off in a self-contained classroom with the kind of elopement and violent outbursts that you're describing. If his IQ is off the charts, they can accomodate advanced coursework while still keeping him in a place that's safe for him and others.

Has he had an evaluation from a developmental pediatrician? The wait list is long, I know -- my DD1 has ASD and we ended up getting her dx through a child psych (Molly White in Parker) because it was faster than Childrens. You said he was evaluated by Childrens -- was it a full developmental evaluation? Speech, OT, IQ, ADOS, etc?

I know it's frustrating to be in dx limbo -- it was hard for me for even just the few months that we had to wait. Knowing that you're probably dealing with a mood disorder that can't/won't be dx'd possibly for years due to young age would just be hell, I'm so sorry.

Have you looked at places like the Star Center? Even just to call and ask advice on what to do next or get an eval? They deal with sensory issues, emotional/behavioral issues, etc. and are pretty well-regarded.

And have you applied to your local developmental disabilities board (mine is DDRC, I'm in JeffCo -- they have different ones in each county)? They can provide some help in terms of waivers/waitlists/funds for therapies as well as resources and information, and they're very helpful people in general.

At a practical level, can you put him back in pull-ups? I know it's not what you want to do, but hell, he can still pull them down to go pee and at least then you're not dealing with shitty pants & underwear on a constant basis.

I'm also going to page auntie because she is a SN guru and may have more advice.

Big hugs, this sounds like it's totally wearing on you.

[LauraMoser]

I just wanted to add to MWOS's post. My dad has epilepsy and has had it since childhood. His seizures have changed drastically over time. Whereas he used to have the classic Grand Mal seizure with convulsions, muscle spasms, falling, etc, they have now morphed into periods of staring, no or very little interaction, and confusion. When they first started presenting in this way, we had no idea that it was indeed a seizure still. So be on the lookout for any single one of those symptoms in the list. You previously said that it happens at times when he is doing something passive. That honestly makes me think that maybe when he seems to be doing something like drawing, that maybe he could possibly be experiencing the visual disturbances, staring, or other less noticeable symptoms of a seizure. My dad's almost-catatonic state lasts a good 24+ hours, but I know that it can be a much shorter period of time for some people.

I'd definitely find a neurologist that will take you seriously. Its worth a shot, even if it just rules out epilepsy in the end.

You sound like a wonderful mother and advocate for your son. I hope you find your answers soon.

ETA: Has he ever had any head injuries? Even minor? My dad was told his epilepsy was likely due to a bad fall he had as a young kid. Of course that was probably 40 years ago or more, so who knows if its actually true.

[WOT?*]

I'll try to not be a wall-o-words. It's me though. Some of this is rather graphic in description.

My seven year old GD (we're adopting) has bladder and encopresis issues. She will hold for 4-5 days because it "hurts" to poop. Her issues are psych related because she withheld (or wasn't permitted to go or wasn't properly potty trained at the proper age) when she was little and wouldn't poop for days, causing impaction issues and so it's ingrained that when she goes it's going to hurt. Generally when she goes, it is the size of a baby's arm and solid, so I completely understand her trauma and fear.

Per urology, I have her on a regimen of an adult dose of Miralax daily to make sure she doesn't constipate; it's given with cranberry juice to help with her chronic bladder infections. Every few months (generally when we have a three-day weekend) we will "clean out her system" by doubling up on the doses of Miralax so she does an adult dose morning and night, and we keep her close to the toilet. She's supposed to drink a bottle of water at school each day and hopefully refill and has a WOBL watch that is set to chime and vibrate at regular intervals (set to good break times during the school day rather than regularly timed intervals). At home she uses the toilet every 1-1.5 hours. If she is not supervised she will sit and take a quick pee but not clear her bladder. (She is incapable of fully emptying her bladder. It's distended and she has an issue with valve coordination at the upper and lower urethra so they don't work in conjunction and she will retain urine in her urethra if she is not seated, potty, sit and relax, pee again to empty again. Her bladder is distended to the size of an adult and she regularly releases a full child's bladder of urine. The bladder issues also correspond to her encopresis. As she becomes more impacted it's more difficult for her to fully empty her bladder. She will leak urine through 3-4 pair of pants daily, and she will leak softer stool around the impaction when she's having bad spells.

We've had her in urology and done studies to relax her muscles. One of the things we do that helps, besides the Miralax (it rather helps that her mom told her Miralax was "magic that made her poop." For a long time she would sit down right after we gave it thinking it would help it come out more easily.)

What we've found, and what urology had us do after a muscle analysis, is to have her sit on the toilet with her feet on a footstool so that they are supported and not hanging or swinging. Her knees should be even with her hips, not up high, feet solidly on the stool. She sits on the toilet with a book for about ten minutes. Sitting on the toilet with her feet propped relaxes her pelvic floor and allows the bladder to empty more freely. I've found that with the relaxed floor and muscles, it also relaxes the rectum/anus and the poop will generally slide out more easily rather than needing to be forced. It's generally one good book, or ten minutes, for the process. It would be a good time for you to have fun together, read together, do puzzles or do anything that will distract him from the fact that he's sitting on the toilet.

Also, is it possible that there's a "fear factor" going on? The toilet is larger than his poor little bottom and some kids (especially with disorders) might feel unstable in the large seat with no support behind them. Do you think maybe a toilet seat insert to make the toilet smaller help him? You can get a padded insert (with a favorite cartoon character if he likes one of the popular ones) or a seat with an attached insert so it's adult/child dual purpose seat. Or something like this (maybe more adult-sized. I'd worry that the step on this is too high so his feet wouldn't be positioned properly and he'd be too big for it. But with the handles and step it's a great idea.) www.amazon.com/Mommys-Helper-Contoured-Cushie-Step/dp/B000AV5LZ8/ref=cm_cr_pr_product_top

I am very sorry you have to deal with this. It sounds like you're doing a great job trying to get a handle on it. I hope you find causation and can treat for it.

[litebright]

Oh, and also, I happen to think resources in CO are shitty. We have things here and there, with huge driving distances involved for most residents unless they are in Denver proper; very few people to choose from in most pediatric specialties, and huge loopholes for insurance companies not to cover any therapies for kids with developmental/psych disorders, so parents are looking at costs in the tens of thousands of dollars OOP per year to get treatment for their kids and most people just scrape together what they can.

I think it's an absolute crime that the autism waiver only covers 75 kids in the state at a time and that the wait list is so long that most kids will age off it without receiving any help at all. The public school system has been a godsend and a bright spot, but I'm not surprised at all that you're having trouble locating professionals to help your son.

[WOT?*]

Jun 5, 2013 23:53:06 GMT -5 @mairzydoats said:

Jun 5, 2013 23:43:52 GMT -5 MWOS said:

Forgive me if this is an obvious question, but has he seen a neurologist?

I worry about seizures, especially with the loss of bowel control

Not an obvious question at all.  I tried to list out everything, but I could have written another page or two and still left something out. 

One of his evaluations included neurology, but no scans, just eye-coordination tests and questionnaires.  He has never had an episode that looked like a seizure - not the typical muscle tenseness or staring and being still.  The accidents tend to happen when he is actively engaged in an activity.  Either active (running around with friends) or passive (reading, drawing, etc).

What could we ask a neurologist to check?  H has a neurologist and a neuroscientist (because he's a case study now), and mostly they look at qEEGs and MRI data.  The last time I suggested we get an EEG for my son, the neuroscientist laughed a little and suggested we wait until he's 7 and can sit long enough to get a useful reading.

If you read part of my novel you'll note the process we use to get DD to use the restroom. I see that his accidents occur when he's reading, which is one thing we have GD do on the toilet. It could be that his floor is so relaxes while he's relaxed and reading that it simply releases. Maybe if you move this exercise to the toilet it will help. He will be concentrating on reading and not pooping. Also, make sure his feet are supported and not hanging to further relax his muscles.

The accidents during high activity would be because his system is being "generated" or whatever.  The urologist had us increase her activity level to get her stool moving through her intestines rather than sitting because she was sedentary.  The increase in movement causes the large intestine to push the food through more quickly. I don't know how you would resolve this issue outside of making sure he was clear before he went outside to run around and play.

GD is 7, btw, and still wears Good Nights every night.  I anticipate she will until she's probably ten or so.  No need to worry about that part of the issue.  It's not uncommon.

[Deleted]

Jun 6, 2013 0:25:11 GMT -5 litebright said:

Okay. Let's start with the basics. I'm in CO, too, BTW.

Has he been evaluated by the school district? Does he have an IEP in place and/or educational dx for services? Is your charter on board with that? I'm kind of surprised you're opting for a charter with these behaviors -- I also wouldn't be surprised if they bounce him back to the public school district. They are legally able to do that if they can't meet his needs, and many of the charters are pretty upfront about the fact that they have minimal staff for kids with SN. I kind of wonder if he wouldn't be better off in a self-contained classroom with the kind of elopement and violent outbursts that you're describing. If his IQ is off the charts, they can accomodate advanced coursework while still keeping him in a place that's safe for him and others.

Totally aware that he could get booted back to his district school, but after talking with that school and the charter I'm willing to gamble that.  I'm struggling to find a way to get an IEP before he starts Kindergarten - is there an obvious way to do that and I've missed it or not asked the right question?  I seriously laid this all out for the charter and they seem ready/willing to take him on.  IQ is out there for sure, but again G&T doesn't seem to start until 1st or 2nd grade.  I'll take any guidance I can get here - I don't even know where I would find a truly self-contained classroom.  He was "disenrolled" from a Montessori preschool already and Bal-Swan put him on the two year waiting list which he ages out of before it even gets close.... His current preschool is awesome and rolls with him, but like I said we do have to pick him up pretty frequently.

Has he had an evaluation from a developmental pediatrician? The wait list is long, I know -- my DD1 has ASD and we ended up getting her dx through a child psych (Molly White in Parker) because it was faster than Childrens. You said he was evaluated by Childrens -- was it a full developmental evaluation? Speech, OT, IQ, ADOS, etc?

It was the full Children's eval including IQ, OT, Speech, Sleep (because we asked), Neruo (like I mentioned above, just questions and eye tests) and Psych.  We also did the state eval (why can't I remember what it's called now) and ASQ when he was 3 that effectively ruled Autism out, so Children's didn't do ADOS based on that.  We have done multiple ADHD and sleep-focused evals as well.  He went to weekly OT at Children's for about 6 months before they ran out of ideas.  He *can* do anything age-appropriate and beyond... it's just a matter of what he *will* do.

I know it's frustrating to be in dx limbo -- it was hard for me for even just the few months that we had to wait. Knowing that you're probably dealing with a mood disorder that can't/won't be dx'd possibly for years due to young age would just be hell, I'm so sorry. 

The "good" news is that we do have him on Abilify.  The bad news is that we don't seem to have a good therapeutic dose and insurance doesn't think a 5 year old should be on that med (neither does the manufacturer - their savings program starts at 6).

Have you looked at places like the Star Center? Even just to call and ask advice on what to do next or get an eval? They deal with sensory issues, emotional/behavioral issues, etc. and are pretty well-regarded.

I hadn't called them because of their location, but you're right that they may have some good other suggestions.

And have you applied to your local developmental disabilities board (mine is DDRC, I'm in JeffCo -- they have different ones in each county)? They can provide some help in terms of waivers/waitlists/funds for therapies as well as resources and information, and they're very helpful people in general.

That hadn't even occurred to me.  I will look into it.  It's hard to think about some of these things as "developmental disabilities" especially without a clear diagnosis.  Even ADHD doesn't seem like a disabling disorder.  Bipolar/mood disorder on the other hand....

At a practical level, can you put him back in pull-ups? I know it's not what you want to do, but hell, he can still pull them down to go pee and at least then you're not dealing with shitty pants & underwear on a constant basis.

When we try that he just takes it as a pass of convenience and then never goes to the bathroom at all.  He'll just poop and pee in them, and since he doesn't seem to care about the smell or discomfort, he won't change it and then he will get really awful diaper rashes.  It kills me every time.  We don't berate him for the accidents, but when he is screaming in the bathtub because the water and soap everything else hurts him I have to remind him that he could have avoided the pain if he just told us he needed to go.  He really seems to be ignoring his body, but what do you do about that when he won't comply with a schedule?
 
Big hugs, this sounds like it's totally wearing on you.

Thank you, it is.  Most moms are sad about Kindergarten because their baby is growing up.  I'm terrified about what the hell is going to happen.

[Deleted]

You are all awesome, thank you. I have to get to bed, but I will check in to see if there are even more great ideas in the morning. And I will be looking for a neurologist who will test him.

I did forget that we also saw GI at Children's specifically, did muscle testing and ruled out constipation and poor muscle tone there. He hates the seat inserts, and is honestly a pretty big kid so there is definitely no "falling in" concern with him. He seems adverse to sitting the toilet, but not afraid. So far we can't figure out why and offers of stools, seats, toys, treats, etc don't seem to help.

Okay... sleep... and dreams of days of no clean up.

[WOT?*]

I'd also suggest a neurologist (and/or neuropsychologist, etc.)  We are following that route with GD2. It's possible that some of the issues are neuro-related even if it's not a seizure disorder. XH had epilepsy but it was adult-onset due to multiple head trauma and not childhood-related so I can't tell you enco-related issues there. My neighbor's son had puberty-onset seizure-disorder which is not uncommon particularly in boys. I'm not sure that the encopresis is epilepsy-related since it seems activity-related but the being content in wet/dirty pants could be neurological.  GD2 will not change her pants and will generally tell me she's not wet even when she is. She can't "feel" it (although I think she can because she hides it when I ask if she's wet) when she leaks.

I'm leaning more toward it being a neuropsych-related issue in your son not related to a seizure disorder. But ABSOLUTELY have it ruled out because you know your son, and even if the enco isn't related, other symptoms may be. There are a zillion types of seizure disorders, not all of them manifesting in what most people would think of as seizures. Blank stares, a twitching finger, eye-movement, tics...all are symptomatic of seizures but most go unnoticed because they're so slight or they're not "the horizontal flop" as my XH calls his. And it's best to rule out than to have a missed diagnosis. EEGs are an absolutely painless diagnostic tool.

ETA:  I just want to add that margotmacomber mary Without Sound macchiato litebright  LauraMoser you all are amazing and came up with some really good information and suggestions.

ETA2: To piggyback on LauraMoser my XH would have an "aura" before seizures where he would see colors, sometimes get a metallic taste in his mouth.  At times he would be writing and would just continue to write back-and-forth in the same place or continue right off the page, and have other less obvious signs of seizure-related activity that were actually seizures.  He could actually be moving and doing stuff but still be seizing internally, with just a "shaking it off" to clear his head afterwards, in what would typically be a "zoning" type of seizure but he wouldn't visibly "space out" - he'd just repetitively do whatever task he was doing (generally they were "mindless" or hand-task type activities like writing, using a wrench and such) for a period of time.  It's something to look for anyway.

[ellipses84]

I have a child relative who had a lot of the same behaviors, particularly violent tantrums and obsessive behavior. He was diagnosed with ADHD at 5 and no medications ever worked for him. That's because he has Asperger's Syndrome. It took years, many psychologists, therapists, medications, etc. until he saw the right Dr who correctly diagnosed him after 20 minutes of talking to him, after months of waiting for an appt. He has improved a lot since the correct diagnosis.

((Hugs)) You are his biggest advocate and will have to fight to get him the help he needs. Also, having both parents learn how to respond to him and diffuse situations can really help daily life.

ETA: Also, he didn't have bowel issues, but did pee his pants at least once a week, even past age 10. Most people who meet him consider him very social and sweet and don't notice the issues he has.

[litebright]

I just popped back in. You get an IEP by calling your public school district and requesting an evaluation -- but now that school is out, it's not going to happen until fall. They have a certain number of days to legally respond to those kind of requests, but only school-year days are counted or something, since the classrooms don't operate all year long. You could at least call the district and ask about the process and see if there's anything you can get rolling. My DD1 has had an IEP for the past two years, it's been a positive experience overall.

Assuming he qualifies for services, what services you are offered in an IEP may influence your enrollment choices -- which again, sucks, because you won't know until after he's started at the charter. The district may want him in a program at a particular school and push for him to attend in order to provide an appropriate and consistent level of support to make progress. We enrolled DD1 at one preschool, then switched after her first IEP meeting (before she even started preschool, we came in at the end of a school year) in order to get her into a particular class with higher levels of support than a typical preschool classroom, that the district wanted her in (and their recommendation was spot-on appropriate, too).

I believe by law they are required to provide services even if he attends a private/charter school, but obviously the charter needs to be in that discussion as well to see what can be worked out -- whether a therapist comes to him or he gets transported, how often, etc. and how it impacts his participation in his own classroom.

Good luck, it sounds like there are still some avenues for you to explore beyond what you've done so far. So that's good.

[litebright]

P.s., if you're considering Bal-Swan, I bet you're not too far from me.

[WOT?*]

Jun 6, 2013 1:18:24 GMT -5 ellipses84 said:

I have a child relative who had a lot of the same behaviors, particularly violent tantrums and obsessive behavior. He was diagnosed with ADHD at 5 and no medications ever worked for him. That's because he has Asperger's Syndrome. It took years, many psychologists, therapists, medications, etc. until he saw the right Dr who correctly diagnosed him after 20 minutes of talking to him, after months of waiting for an appt. He has improved a lot since the correct diagnosis.

((Hugs)) You are his biggest advocate and will have to fight to get him the help he needs. Also, having both parents learn how to respond to him and diffuse situations can really help daily life.

ETA: Also, he didn't have bowel issues, but did pee his pants at least once a week, even past age 10. Most people who meet him consider him very social and sweet and don't notice the issues he has.

Excellent advice.  XH's son is on the spectrum (high-functioning autism) and I recall them having issues with him as well.  I looked up symptoms with Aspergers and there is a correlation between them not being able to identify the social aspects of toileting, being accustomed to their soiled clothing (feel, smell), not being able to identify the "need" when they have to go...  GD has ADHD which also correlates but I think you already looked into that iirc.  Definitely food for thought.   to ellipses84

[Deleted]

I live in Switzerland. BIORESONANCE Testing is very popular here -- based on the laws of physics -- I swear by this testing -- they test every body system and every food source possible. It's pain free and if your kid can't sit still during in than you hold two flat discs to their neck for 1 minute to gather the data and then the Dr will call you with the results. 

I don't know if they do bioresonance testing in America. Medical drs will call it rubbish but until you go thru the testing and find the results and take the necessary actions no one should mock it.

Many hugs for you. I cannot imagine the patience you have built up. Hang in there and I hope you find a solution soon. 

[auntie]

Jun 5, 2013 23:23:25 GMT -5 @mairzydoats said:

My son is 5 years old. He has a lot of issues that don't add up to a neat diagnosis. Here is a rundown:

• He behaves like classic ADHD most of the time, but we tried stimulant medication and it did not go well (6 straight hours of screaming on two separate medications)
• It's interesting that he didn't respond well to an ADHD medication. Maybe he doesn't have ADHD. Or maybe he reacted to the med. 
  
  
• Typically kids with ADHD will do well on a med from one of the two basic classes of stimulant meds. Stimulants are either based on the active ingredient in Ritalin or the one in Dexedrine. If you trialed Ritalin and Concerta, you tried one active ingredient not two. Same for Dexedrine, Adderall and Vyvanace. Some people become emotionally labile on one of the active ingredients but not the other. You could also try a course of a non-stimulant medication like Straterra or Tenex/Intuniv for attentional issues.
• 
  
• He obsesses about wanting things to the point of trying to leave any building (and sometimes succeeding) to try and get to Target/his friend's house/wherever on his own. He has completely escaped from school and home.
• 
  
• Getting stuck or fixated on having something a certain way is classic AS. Alas elopement is fairly common as well. This is a behavior that can be challenging in school and may require a more restrictive setting than a charter can and will provide. ASD's bring social and emotional immaturity and poor executive function skills to the party even when a kid is reasonably bright he will struggle to delay gratification or regulate his behavior at a level expected of his age.
• 
  
• But he doesn't care much about how clothing feels, get worried about future events, or need things to be in any particular place. He doesn't fit the profile for OCD or Anxiety Disorder, though he takes Zoloft for anxiety. It helps a little.
• He is a sensory seeker, but shows great self control the majority of the time.
  
•  He doesn't benefit from his chew toys, seat wedge, sensory brushes, or weighted vest at all any more. We still do some joint compression but that is about it.
  
• 
  
• Sensory processing glitches can be different for different people. There's an old saying about ASDs- if you've seen one person with autism- you have seen one person with autism. Don't be expecting Rainman.
  
• Who is managing his meds? Zoloft is an interesting choice for a child with a strong family hx of bipolar disorder. The SSRI are generally not used in people with bipolar or a strong likelihood of developing the condition- these meds can cause activation of even trigger bipolar. In these situations, Risperdal is often used to help a person become unstuck and to calm down the anxiety and irritablity. I know a couple kids with a bipolar parent who are able to take Zoloft or Lexapro safely so long as they have a tiny dose of Risperdal along with it.
• 
  
• He has bad encopresis. Like daily poop accidents. Sometimes multiple. He has been checked for constipation, nope, bacterial growth, nope, toilet fear, nope (though sometimes he freaks out and insists he doesn't need to go, and then has an accident 5 minutes later. Other times he is great and just wants a magazine and some privacy which are always granted).
  
• 
  
• Encopresis without a history of constipation is basically just soiling. Sometimes kids with SPD are unable to consistently  "read" their body's signals to go and a schedule of attempting to evacuate is put into place after eating. 
• Sometimes this is purely behavioral in nature an can be used to get out of a less preferred activity or to get back at a parent who is enforcing control.
• DS had a shitter in his second grade class- the kid was a genius who didn't like gym class and would soil to avoid it. The other kids, many who had sensory issues themselves, hated him. He was only placd with the LOs because the middle school kids tried to light him on fire at recess.
• If your son doesn't realize how his behavior impacts what others think of him and treat him, school is going to be difficult. Michelle Garcia Winner has Soical Thinking lessons to help kids on spectrum and with intense ADHD take ownership of how their action impact what others think.
  
   
• His sleep is not very good. Lately he goes to bed by 8:30 or 9 with the help of melatonin, but he *always* wakes up before 6. Sometimes as early as 4:45, and is chipper and will not go back to sleep. We have tried putting him to bed earlier (7:30 for two weeks) and he just wakes up even earlier. He naps occasionally.
• Difficulty with sleep and a reduced need for sleep are red flags for ASD. Melatonin typically tanks after a couple weeks of constant use. A lot of families whose kids are reduced need sleeper or have insomnia use Intunive/Tenex for ADHD at bedtime since the side effects associated with it as sleepiness.
• 
  
• When he tantrums, it isn't typical 5 year old stuff. It's violent and lasts hours. He has punched preschool teachers, broken furniture, and is generally sent home at least once a month because they can not calm him down. When he does calm it's like it never happened. When he is calm he is sweet, polite, and empathetic to everyone around him. He is always the first one to help another kid who has fallen or is sad about something. He has never been violent towards another child... only adults. 
  
• 
  
• Classic AS. Most kids with AS can be very reactive and even aggressive. This behavior will be a problem in "real school". I expect the charter will disenroll him if he becomes very uncooperative or violent even if he's usually pretty mellow. You must put a Plan B in place so you can implement it asap in that eventuality. To that end, Litebrights suggestion of a MFE for all areas of suspected disability is critical. This request must be in writing to protect your son's rights under IDEA- phone calls and emails can be ignored. Even if you do get an IEP, the manifest determination protections are fairly limited if he is a risk or significant disruption to others. 
• 
  
• Nobody can predict his triggers.  Initially people think we just aren't paying attention, but within a month or two everyone who works with him has admitted that there is no predictable pattern. Some transitions go terrible one day and great the next, he may go two days in a row with no accidents, and then the next day have three. 
• 
  
• You need to request a FBA as part of any workup done. A behaviorist collecting data on his behavior may be able to uncover why an emerging skill like transitioning can be fine one day and gone the next. Sometimes it's as simple as hydration or blood sugar; sometimes what's playing in his head needs to end before he can move on to the next thing. A BCBA should be able to see this better than those who are close to him.

I know there is a mood disorder, though it isn't popular to diagnose kids his age. What happened when we tried a stimulant pretty much confirms it. He is on a mood stabilizer which helps somewhat, but insurance doesn't want to cover it and I don't think we've reached the therapeutic dose for him yet. The mood stabilizer and anti-anxiety combine seem to be helping a little with everything but the encopresis.


Abilify is an atypical antipsychotic, Risperdal is as well. Risperdal is indicated for 5 and up; talk to your doc and see if switching is appropriate in your case. These drugs can be quite pricey and Risperdal should be covered. It has a longer history of use in children as well.


The stimulant reaction could have just been a bad fit rather than proof of a mood disorder. DS and my mother (who is a narcoleptic, btw) both react emotionally to Ritalin based meds. My mother becomes a viscious douche bag and my son a sobbing psychotic. Fun times. My mother switched to another tx plan and my son does well on Adderall. I know kids who are fine on Concerta and nuts on Adderall- it's very individualized.

I have no idea how this kid is going to do in Kindergarten. We've told the school he will attend, which is a very hands-on charter which I hope will help. And honestly, I'm to the point where I can deal with all of it except the leaving buildings and poop accidents. We have had to rush out of so many places and events because he has an accident. He doesn't tell us when it happens or seem to care, so we usually find out by smell, which is so fucking embarrassing. We never go anywhere without a backpack of extra clothes, bags, and wipes. We had him on a toilet schedule but he tantrumed every time we enforced it. He will go on his own sometimes, but you can't convince him to try. He claims nothing hurts, he isn't afraid of the toilet and does a good job peeing in it, he just "doesn't want to sit" (I wish I could figure out a way for him to shit standing).  The fact that he still wears a pull up at night doesn't even phase me yet. His 3 1/2 year old sister is completely toilet trained, day and night. We have 0 of the same issues with her.


Does he have any hypotonia? This is almost universal to some degree with kids on spectrum. Often they have low tone in their trunk region which can make the physical act of moving their bowels more difficult that it is for other people. This can be really subtle because tone isn't the same as muscle strength. Clues to this might be that he has trouble sitting upright in a hard chair for a long time, has very lax joints or fatigues more easily than kids his age- especially if he's being asked to do something that isn't a favorite activity.

We've done OT. He has a restricted diet (gluten/dairy free, low sugar, no dyes, etc). He's in BT and has a psychiatrist. He takes medication. We supplement him with extra zinc and iron. We have all kinds of charts, stars, incentives, consequences and we are consistent with them. I truly don't know what else to try.


Are you working with someone to cobble this tx plan or going it alone? 
FWIW, sticker charts just pissed my kid off. The visual reminder of where he "failed" exacerbated his behavior because it ramped up his anxiety. If your DS is like mind, you can expect the early years of school to be hell since teachers seem devoted to this sort of visual.

H is bipolar (diagnosed two years ago, medicated and mostly stable), which doesn't help, but my son's episodes don't seem to correlate with his dad's or get worse when H is down and not very fun to be around. H does not get physically violent, but he does yell and turns into "a dark cloud" when things are overwhelming for him. This doesn't usually phase my son at least outwardly (my daughter is another story) and doesn't increase incidents in him at all or make him extra emotional.  We keep track of this for BT.


If your son has an ASD, he may be oblivious to your DH's mood because he can't read the emotional content of his verbal and non-verbal communication. I used to car pool with DS and 2 other boys when DS was about 8. The ride was almost an hour to school and they were badly behaved many afternoons. It used to freak me out that DS couldn't read my emotions as well as these two other boys who barely knew me could. I am DS's "preferred person"; he is more tuned into me than to anyone since I am a constant and advocate in his life.
 
So seriously... what is left? Everybody is out of ideas. His teachers, his therapist, his OT cut him loose because they couldn't think of anything else to do with him (he had mastered their curriculum for 7 year olds with ADHD). Psych just wants to increase doses, but that isn't magic either. And NONE of this helps with the mass quantities of literal shit we clean up on a daily basis.

Did I mention he's FIVE?

500,000 Internet Points to you if you got through all of this. I wish it were shorter, I really do.

If I were in your place I would see whatever expert Litebright suggests for a full private evaluation. I would request an MFE via USPS with return receipt requested today. And I would get a copy of this book and see if it sounds familiar-

The OASIS Guide to Aspergers Syndrome

[imojoebunny]

Just want to say your not alone. My DD was toilet trained from 3-5 years. From then on, she wet her pants every day practically for no medically explainable reason, though there were loads of theories. She was diagnosed in January with ADHD and visual processing disorder. We started her on Ritalin and she magically stopped wetting her pants, but started crying every day for an hour or more. It was horrible. We tried a long acting amphetamine, and she was up until midnight (suppose to be 7 hour time release), Then we tried a 4 hour amphetamine, and she was ok on that, but very argumentative, and it did not help much in the classroom. She is currently unmedicated and is still not wetting her pants anymore. We are going to try Kapvay in the fall before she goes back to school. She has done very well with one on one reading tutoring, after making no progress in her classroom for 1.5 years. Watching her in a classroom is like watching an institutionalized person, she just isn't there and bobs her head around like she is on another planet. She does not have any classroom behavior problems because she is in her own world fidgeting and wiggling to stimulate her self or what ever makes her brain do that. She is smart, just completely unfocused.

Because she is smart, she does not qualify for an IEP. The progress that she has made with the expensive private tutor brought her up to the 17%. despite her much higher potential, she is not eligible for services, only accommodation under a 504 plan. The accommodations do not come with support for the teacher, so they can do little more than dumb down the curriculum, so they can pass her, not attempt to improve her ability to function and learn. We are taking her out of public school and putting her in a private school that has small class size and will provide special education support for DD and the teacher without having an IEP. It is big $$$, but we feel we have no choice. we have given the school two years to do something, and despite having a wonderful teacher, and support outside of school, it is not enough. I do not have the patience or the will to fight them anymore. DD needs to learn now, not in 3 or 4 years when she completely fails because they haven't taught her anything for years.

I highly recommend the neurologist. He has been much better than the general ped or the phycologist about working on getting the right medication. The medication should make things better not worse. If he does have autism of bi-polar, the medications will not work, and will likely make things significantly worse, but even in kids that don't have those things, the wrong medication can make things worse. The pediatric Neurologist we go to has mountains of experience and won't settle for crappy side effects or ineffective meds. There are at least 50 different ones to try and way more combinations.

I wish you lots of good luck. I know how hard it is to watch your child suffer and continuously worry about their future. For the first time in a long while, I feel like there is some hope for DD, that we will eventually find the right balance between therapy, specialized tutoring, and medication that will help her reach her potential.

I would call the school now and ask for a meeting the first day you can. If you wait until school starts, you will likely be pushed back for at least two months, and it will be the end of the year before you get anything from them. There are some letters online that tell you what to ask for under Idea. You might also want to consider hiring an advocate. Don't do what I did and wait 1.5 years because they told me "oh, we will try level one intervention for 90 days, then level two, then level three," meanwhile, we do a ton at home and outside of school and suddenly, DD doesn't qualify anymore because she is considered average at 17%, not because the problem has gone away or because she isn't smart enough to get to well above average,, but because the kid is working so stinking hard, and her teacher, tutor, doctor, and our family are twisting into a pretzel to get her through 1st grade.

Sorry for the long diatribe. Hope some of our experience helps.

[deanlicker78]

My stepson is 8 and has ADHD and is Bipolar. He poops his pants all the time and also wets the bed at night. He wears a pull up at night which he hates, because he's 8 but he has already destroyed a couple of mattresses so he has to wear one. He has no fear of the toilet, he has been checked more than once by a Dr, there is no reason for him to poop in his pants other than when he is busy doing something he just doesn't want to take the time to stop and use the bathroom. He will sit in poopy pants all day until we notice the smell and make him get cleaned up. He has been teased at school about it and it doesn't bother him.

The only thing that will stop him is if we tell him that if he won't use the bathroom then he needs to wear a pull up during the day. He hates pull ups so if he knows that is an option, he will use the bathroom and have no accidents. We have to constantly remind him though.

My SS also wakes up before 6am every single morning. No matter what time he goes to bed at night, he rises extremely early. Even when he was on an anxiety med that turned him into a little zombie, he was still waking up between 5 and 6. It's just his natural time to wake.

We have no pediatric psychiatrists in our area either, we have to drive over an hour away to take him to one. When we finally got his mother to agree to take him there, they redid all his meds and things have improved somewhat.

[Deleted]

Just coming back to thank everyone who replied. I've read this thread about 50 times today and while I'm overwhelmed and very sad to think about what is likely coming over the next several years, I am also glad to feel there are paths to consider again. This time last year I was on the phone constantly trying to get evaluations, OT, allergy testing, etc set up - looks like I need another round of that at another level. I thought I had a decent collection of professionals, but it clearly isn't enough, and I'm the only one tying the information together.

Thank you all again for your support and commiseration. I will no doubt be asking more questions in the future.

Also, litebright has a PM (I have no idea how to tag, so hopefully she sees it).