What do I want - OT or NP?

[Sdel]

I would like my DD to be tested for sensory and possibly other issues.  I believe she is sensory seeking and at a minimum has postural issues (W-sits and poor balance).  She has had an OT eval and they claim she is "average" in gross and fine motor, but I see that my DD has issues and is lacking compared to her peer group and they didn't address half of my concerns (primarily the postural/sensory seeking stuff and a complete inability to read her internal body cues).  Her pediatrician has pretty much already offered to give me an ADHD diagnosis and meds but I felt like it was pretty much a "dope her up and it'll all be good" attitude.  She may have ADHD, but I don't want to just rely on meds.  There is also a strong family incidence of autism with two of her cousins having autism.

 

Next month my DH is going with one of his adult kids to a NP to take a huge battery of tests.  His current psychiatrist thinks he'll probably test on the autism scale.  Since he'll be there, he could try to schedule my DD for an appointment.  

 

The question is, do I want a neuropsych or do I want to find an OT that works with sensory issues and get a second opinion for sensory?

 

Stefanie

[PeterPan]

Who did the OT eval?  If it was the ps, they were only looking for the most severe presentations (2 standard deviations below the mean is the norm in our area) to determine services.  Yes, if you had just a run of the mill OT, you might get a very different result if you take her for a SIPT or to somebody who deals with a lot of sensory and spectrum.

 

How old is this dc?  My ds still W sits, and the OT told us it was normal through about 2.  It's definitely not normal (as I understand) in school age kids and can indicate low tone.  Yes, the sensory issues and tone would go together.  

 

I agree with you on the meds.  I'm not anti-med, but there's so much you can change and physical things to deal with.  My ds got a provisional diagnosis of ADHD from the first psych we took him to, and the ps psych tested and could not confirm.  Now we're going for a 2nd (3rd) opinion with a psych who specializes in aspergers.  Psych 2 found with his computer test that ds had fabulous attention (read hyperfocusing) but really high impulsivity.  So it reads as ADHD on the surface, but it's not diagnosable that way if you can't demonstrate inattention, at least not according to the ps psych.  And what he's showing explains what we see in my ds.  

 

So maybe at least give the process a couple months, get some evals, and see where that gets you?  The younger the child, the less likely I'd be to medicate and the more likely I'd be to work through a lot of modifications and accommodations, just me personally.  If the child is in *danger* or unable to learn, those would be my lines where I'd definitely move sooner.  But if the child is in danger, why are we not getting behavioral interventions?  And has the child had OT?  Our OT recommended Focus Moves, and that brings my boy into a better state where he can work with me.  So I'm not anti-med, but I think it's sorta one-sided to dispense meds without mentioning that there are all these other things to do TOO.  

 

When they get a little older (8-10+), you can do Cogmed.  There's also neurofeedback, and I'm guessing nf is effective much younger.  The research is showing Cogmed not effective younger, and I think the issue is the method of interaction with the computer.  Neurofeedback doesn't require that, so it would be more effective younger, I would think.  I've finally found an OT locally who does NF, so I'm hoping to get to try it with dd (adhd without controversy, haha).  

 

I guess the question is whether this 2nd psych will spend the time to dig in and examine carefully?  Our first psych just said "he walked in the room, looked me in the eye, and talked to me; he can't be on the spectrum."  This 3rd psych is going to spend hours and hours JUST examining the spectrum question, really spending time with him and talking.  I have no clue what the conclusion will be, but I'm just saying that time ought to make a difference.  And it won't be one day but over multiple days.  So maybe see where other people are taking their kids and who is taking the time to draw it out of kids? It's weird because for an adult they'll spend an hour or two and you're done. Maybe your dh's will spend longer?  Most people I've talked with had a 1-2 hour session, got an informal diagnosis (no write-up, etc.) and were done. The adult can answer questions and has so many experiences it's not hard to get there.  For the child, the eval is usually many hours and you're trying to create a paperwork trail of documentation, because you're going to be arguing for services, using it to get stuff through your insurance and disabilities board and school services, etc.  It's much more involved.  The person who does that adult even might or might not be the right person to do the child eval.  Just depends on their set-up.  

 

No matter what, I agree with you on 2nd opinions.  I definitely think things get missed.  I had decided just to accept the results of the first eval, and it was actually the ps psych and then another professional I took him to who persuaded me we needed a 2nd opinion on this.  However there *is* a lot of willingness to call things social delay due to ADHD or say they're missing things because they're not attending.  We don't feel that's what's happening with my ds and we now have computer evidence demonstrating there is not inattention, just impulsivity.  But I'm just saying that *can* be an outcome.  It can also be the child is just young enough that they aren't ready to diagnose yet.  I'm being told locally that you're more like 7-9 for the HFA/Aspergers diagnosis, that before that they just sorta figure it's within the realm of normal.  You end up with these sliding labels (first round ADHD or ODD, next round a few years later mood disorder, then finally in their teens ASD).  Obviously they were spectrum all along, but it's something of the imprecision, the screwy definitions, and the lack of really spending time with the kids that results in this, not to mention that some behaviors just plain ARE common in the age.  If you say your 6 yo boy wets, people go oh yeah mine does too.  But there's does because he's too busy to get up, and setting timers solves it.  Mine does because he's so undersensitive.  He'll literally stand in church and pee and pee because he has NO CLUE it's happening.  It just happens to him.

 

And yes, our psych was a jerk to me, saying parents shouldn't tutor their kids for SLDs and strongly hinting that *I* was the problem with flagging the behavioral questionaires when nobody else flagged them quite as hard as I did.  But *I* am the one with him all day so OF COURSE I'm seeing stuff!!  But that idiot, jerk, fool, rash, money-taking whatever hinted *I* was mental and I dropped it.  Now I've got two other professionals strongly saying something got missed.  *I* didn't bring it up, they did.  I tried to walk away and let the "ADHD with social delays" thing stand and they're the ones telling me not to.  So yes, if they're hinting you're nuts, that's their arrogant gig.  Your only concern is correct explanations and assistance for your kid, and that's all you should be focused on.  And yes, with that family history I think your question is perfectly valid.  It's only a question of whether that particular psych is set up to work with kids or whether someone else will take more time.  

 

PS.  So the answer is BOTH.   :)

 

 

[kbutton]

I have two kids who just finished OT. They both pass the public school standards, but they are/were on the low end of functional in some areas. One is sensory over the top but mostly great tone (low in a few specific ahead, strong as an ox in others). The other one has low tone head to toe, but almost no sensory issues. Both have some problems with crossing the midline and motor planning (one had VT first for convergence issues, and the bilateral exercises he did for that primed the pump for OT to work). My low tone kid has the most motor planning trouble.

 

Sensory is very related to attention because it's a distraction the child can't really get away from. It's constant. You might notice great improvement with attention, or just some improvement through OT, but if the OT does a good job, you'll be glad you did it to address sensory. Our OT explained that sensory stuff never goes away--it just takes different forms as a child ages, so it's important to address it. Our psych is quite adamant that the sensory stuff becomes anxiety as the child ages. If they are both right, I take that to mean that you'll be dealing with anxiety if you don't deal with sensory! That is definitely the case with our sensory kid. He was very sensory-defensive with unexpected touch, and it resulted in him hitting other kids--they'd tap him on the shoulder from behind, often to keep him from getting into some kind of trouble, and he'd freak out, turn around, and smack them. He often didn't even remember what they were doing--he just felt extreme fear instantly, and then horror that he'd smacked someone. Anyway, OT helped tremendously with that. They also used Zones of Regulation with him, and that was really helpful. We still have ADHD. OT just gave us fewer distractions. :-)

 

Low tone--this kiddo is ADHD inattentive type. He benefited greatly from OT, but it's on us to keep up with exercises for building muscles. He still w sits, but it's getting to be much better. He's much stronger. It's really hard to work all the activities in that we need to, but our OT gave us the tools to do what we need, and we are free to come back in the future if we run into additional issues. OT showed us how to make a lot of the activities fun, and how to combine activities to get the most from them at once.

[kbutton]

Oh, I meant to tell you that our older son is diagnosed with PDD-NOS (spectrum), ADHD, and SPD. Sensory stuff was the most obvious, ADHD started to become a maybe--we needed to rule out complete boredom in school first (hyperactivity has come into play as we move toward puberty), and spectrum was the least pronounced until he was about 9. Now it's fairly obvious.

[Sdel]

My DD is 7 and will be 8 in Nov.  She was seen at a run-of-the-mill OT who started off telling us that insurance wouldn't cover anything sensory. She has not been seen by any kind of psych so far.  At the appointment they did the motor test and we filled out the sensory questionnaire.  The results were relayed to me as fine and gross motor were within normal average, but I can see she's really active so you can google "heavy work" activities the help with that, but they would not be providing any services.  When I asked about postural issues, I was simply told to correct her when I saw the behavior and that sports would help with that and they didn't address the sensory questionnaire at all.

 

She's almost 8 and still can't do a cartwheel or even a simple pivot turn.  She gets herself all tangled up and forgets her handedness.  In soccer it seems like she can't visually adjust to the players running around on the field, and when she goes to kick there is a noticeable delay and it appears she has to reorient herself before she can kick.  She also has a lot of problems with swimming.....she can't keep her legs straight and she has issues floating (tone?) as well.  She's also the "dangerous" child.....she almost impaled her self jousting with a hammock and her "lance" caught the railing of our deck.  She has always pulled her hands out of mine and tried to take off across parking lots without looking.  She also will get so bad she'll barrel head first into the couch with enough force that I'm afraid she'll break her neck (Fortunately she seems to be outgrowing that one).  She constantly spinning or sliding whole body on the floor, climbing up something, or going in circles around us, W sits, and when writing will occasionally bend over and put her head on the table.  She'll even walk around bent sideways from the waist.  She also does have a lot of anxiety and poor attention and EF. 

 

She can learn....but she doesn't seem to retain *anything* done auditory.  I don't do read alouds because she doesn't seem to pick up on it at all, even after multiple repetitions, even when she is interested in the materials, and fidget tools/play dough don't seem to help.  The only thing that helps the auditory retention is some form of exercise just prior.  It is really hard to figure out when is the best time for school.  Once she gets tired or hungry she gets incredibly resistant to anything and her behavior tanks.  She can not tell when she 's hungry or tired or needs to go to the bathroom.  She'll be insisting to high heaven that she's got "to go pee" bad and can't hold it and then 5 seconds later she's conked out asleep.  She'll eat 2 bites of breakfast and pronounce herself "full" and then refuse to eat until dinner.  Very frustrating because her behavior is horrid.  When she's hungry she won't say she's hungry, she'll just start chewing on her shirt or toys and then won't admit she's hungry (funny that she never took a pacifier as a baby).  

 

She has attention issues, but my gut doesn't scream ADD/ADHD.  I don't think she's on the spectrum, but with such a huge family incidence, I'm a bit more open to consider some of the possibilities.

 

If you had to pick one to do first, would it be sensory or NP?

 

Stefanie

[PeterPan]

You'll be able to get into a good OT for sensory sooner than a good psych, most likely.  There are exceptions to that, but I'm just saying in general.  My ds is very hypo-sensitive, like what you're describing, and yes he crashes into couches, has it affect his sense of eating and bathrooming, etc.  That's noteworthy that she chews on her shirt and hypo-sensitive can be a spectrum indicator.  (I think it was listed in DSM4, yes? Where did I read that?)  

 

Another way to approach this would be to find a place that does all the evals under one roof.  As far as your insurance, they spent probably $80 on that crap eval, and I'd dispute it.  The proper eval for sensory is going to be several hours.  Sometimes they'll run the shorter eval and sort of eval and do therapy and add as they go, meaning that short 1 hour eval is more of an intake.  But to have paid for one hour and gotten that much of a blowoff is astonishing.  You couldn't possibly have been with the right OT.  Someone who knows sensory would have gotten you going in a heartbeat.  

 

You want an OT that is dealing with a lot of ASD, if that helps your search.  If the OT is SIPT-certified, that's a very very good sign.  SIPT is one particular test, and there are other ways, meaning they don't *have* to be SIPT-certified.  It's just something to look for.  The lists are available on the western publishing site for SIPT-certified.  

 

So you're saying it's a budget question or a what will help question?  My answer is still both.  I'd find out who you want for them and then see where you're at.  It may take you a while to confirm you have the psych you really want.  

 

Yes, my ds' computer testing, at least the 2nd round where I saw the results myself, showed crazy high IMPULSIVITY and extremely good attention.  Working with him is astonishing because he's both very focused and out of body, off the walls at the same time.  He'll be there, and then bam he'll just be gone or somersaulting off.  I put him in gymnastics btw.  If you're having trouble deciding what to do, OT is not the *only* option.  I'm still working on getting him funding for OT, but it's amazing what gymnastics has been able to do for him.  It takes a lot though, not just an hour a week.  He's in there 4 hours a week, and I'd get him in more if I could.  Actually, I had him in 5 but he maxed out of one of the classes.  He's at the Y, which is affordable, accepting of disabilities and people with slower progressions, and which has wonderful people teaching the classes.  I've checked into private, which could get him more hours, but I'm concerned about pressure and whether they might max out his social maturity.  With the Y program, it's easier for me to support that and make sure he's ok.  As long as he's doing his gymnastics 4 hours a week and swimming three days a week, his crashing is held in check.  Remember he's hyposensitive, so all that rolling, crashing, etc. is fabulous, fabulous for him.  They focus on core and upper body strength in gymnastics.  A lot of the things he's doing are the same things they'd want him to do in OT (wheelbarrow, sit-ups, things for core, etc.).  It's just this way it's games, games, games.  It doesn't address everything, but it might be something you could start NOW for a price you can afford NOW that would possibly give you a little help while you sort through your other options.

 

I think, with what you're describing, the np eval is inevitable, sorry.  The OT eval for sensory you need.  It's more just what you can afford and who the right person is to do it.  I'd rather have something NOW and take my time on figuring out the evals, which is why I mention the gymnastics.  If she's doing that and you're having this much trouble, that's very wow.  Try taking off it a week before her next OT eval and using somebody who sees a lot of ASD or who does SIPT.  I hope you can get coverage for the re-eval, if that's your issue.  

[Sdel]

You'll be able to get into a good OT for sensory sooner than a good psych, most likely.  There are exceptions to that, but I'm just saying in general.  My ds is very hypo-sensitive, like what you're describing, and yes he crashes into couches, has it affect his sense of eating and bathrooming, etc.  That's noteworthy that she chews on her shirt and hypo-sensitive can be a spectrum indicator.  (I think it was listed in DSM4, yes? Where did I read that?)  

 

And we have a very spectrum heavy family on DH's side.  One of my nephews is severely autistic to the point he will never function enough to be on his own.  It probably doesn't help that she was a 28 weeker.  She doesn't chew on her shirt anymore....but she still chews on anything and everything plastic when she get's hungry.

 

Another way to approach this would be to find a place that does all the evals under one roof.  As far as your insurance, they spent probably $80 on that crap eval, and I'd dispute it.  The proper eval for sensory is going to be several hours.  Sometimes they'll run the shorter eval and sort of eval and do therapy and add as they go, meaning that short 1 hour eval is more of an intake.  But to have paid for one hour and gotten that much of a blowoff is astonishing.  You couldn't possibly have been with the right OT.  Someone who knows sensory would have gotten you going in a heartbeat.  

 

No, it was all OOP.  The OT said the carrier considers sensory issues "theoretical" and they don't pay for any of it unless it is so severe it obviously impairs functioning or is attached to other impairing diagnoses. 

 

You want an OT that is dealing with a lot of ASD, if that helps your search.  If the OT is SIPT-certified, that's a very very good sign.  SIPT is one particular test, and there are other ways, meaning they don't *have* to be SIPT-certified.  It's just something to look for.  The lists are available on the western publishing site for SIPT-certified.  

 

So you're saying it's a budget question or a what will help question?  My answer is still both.  I'd find out who you want for them and then see where you're at.  It may take you a while to confirm you have the psych you really want.  

 

I'll look one up this coming week.  Budget isn't as much of an issue as travel is.  I'm just looking for what will get us started on making a difference soonest. It is really hard to get consistent school done because she is so off and on.  Some days feel derailed before we even get to the breakfast table. 

 

Yes, my ds' computer testing, at least the 2nd round where I saw the results myself, showed crazy high IMPULSIVITY and extremely good attention.  Working with him is astonishing because he's both very focused and out of body, off the walls at the same time.  He'll be there, and then bam he'll just be gone or somersaulting off.  I put him in gymnastics btw.  If you're having trouble deciding what to do, OT is not the *only* option.  I'm still working on getting him funding for OT, but it's amazing what gymnastics has been able to do for him.  It takes a lot though, not just an hour a week.  He's in there 4 hours a week, and I'd get him in more if I could.  Actually, I had him in 5 but he maxed out of one of the classes.  He's at the Y, which is affordable, accepting of disabilities and people with slower progressions, and which has wonderful people teaching the classes.  I've checked into private, which could get him more hours, but I'm concerned about pressure and whether they might max out his social maturity.  With the Y program, it's easier for me to support that and make sure he's ok.  As long as he's doing his gymnastics 4 hours a week and swimming three days a week, his crashing is held in check.  Remember he's hyposensitive, so all that rolling, crashing, etc. is fabulous, fabulous for him.  They focus on core and upper body strength in gymnastics.  A lot of the things he's doing are the same things they'd want him to do in OT (wheelbarrow, sit-ups, things for core, etc.).  It's just this way it's games, games, games.  It doesn't address everything, but it might be something you could start NOW for a price you can afford NOW that would possibly give you a little help while you sort through your other options.

 

This is how I would describe her.....both very focused and off the walls.  There one minute and somersaulting off the next.  We do gymnastics on Monday afternoons.  She only officially has a lesson once, but I take the toddler in the mornings and since he's the only one in the class the instructors let her tag along so she can get some extra bounce and crash in.  Tuesday and Thursday mornings we recently started having a 30 minute swim lesson.  If we try to do it in the afternoon she gets pretty spazzy and resistant.  For about 16 weeks a year we have soccer.  Official practice 1 hour a week and then a 1 hour game on Saturday morning.  And then Fridays her gym has a parents night out that she goes to religiously.  Sunday is consistently her worst day, and our consistent low activity day.

 

I think, with what you're describing, the np eval is inevitable, sorry.  The OT eval for sensory you need.  It's more just what you can afford and who the right person is to do it.  I'd rather have something NOW and take my time on figuring out the evals, which is why I mention the gymnastics.  If she's doing that and you're having this much trouble, that's very wow.  Try taking off it a week before her next OT eval and using somebody who sees a lot of ASD or who does SIPT.  I hope you can get coverage for the re-eval, if that's your issue.  

 

It gets better when the activity is consistent....but yes, I still deal with some level of the constant seeking no matter how much activity she gets.  I think it is because of the possible low tone.  I just really feel like I engage her in the activity to help with the seeking, then she gets tired from the low tone/postural issues, and then she loses her ability to control herself or can't just sit still and relax and then starts the seeking until she simply crashes in exhaustion.  Right now she's tired (stayed up late without permission and had to get up early) and it's been a low activity day and she's currently hopping up, rocking on her belly over the arm of the couch, and then back down to feet on the floor....repeat, twist to arch back over the back of the couch with her head on the seat....etc.....

 

 

I think I'll be trying to get an appointment at TX Childrens in Houston this week...they should have everyone I need there, either as a group or separate.

 

 

Stefanie

[PeterPan]

Yes, you should get in and get both done.  Just make sure, sure, sure that your OT does sensory well!  http://www.wpspublish.com/store/Training/TherapistIndex

That's the link for SIPT-certified.  Isn't the only way to get a good OT, but it sure is a marker.  

 

The OT should help you make some changes right away with a home program to get that stimming toned down.  When you have the OT eval, ask them about things you can do in addition to their home program to help her.  My ds will have 2 hours of gymnastics Monday, swimming and another hour of gymnastics on Tuesday, wednesday off, Thursday swimming and gymnastics, and so on.  He can do 3 hours of sports in a day and not even BLINK.  

 

Horse riding can be good and it's super fab for core.  If you have money to blow, horse riding is one you can't go wrong with.  Find someone who does hippotherapy (I forget what it's called) so they have experience with SN and can bring that dimension.  It will do things you're not expecting, like building shoulder strength and hand strength for her writing and she'll love it. (Currying the horse, fastening the buckles, etc., things they might not let her do right away but will eventually.)  OT is good, but you can balance it out with these other things.  

[Lecka]

Getting it all done at once sounds really, really nice to me.  That is not an option I am aware of in my area.  That sounds like it would be ideal to me.  Everyone could have all the information at the same time, and have all the information they needed to be able to do what they needed to do ---- instead of having blanks not filled in that would be helpful to them.  That sounds great to me -- I hope you can get in in a reasonable period of time!

[Sdel]

We have two people on the OT list in my hometown, and multitudes in Houston. I think I'll try one of the OT's close to home and research NP's through insurance because our insurance is crap on psych stuff. We will not have one of those accessible in town unless maybe the uni has one squirreled away by some miracle.

 

And I guess I'll stop stalling on the horseback riding lessons.

 

Stefanie

[MomOfABunch]

Given the behavior you described above, I would do NP and think about finding a developmental Ped. Your description sounds like more than just sensory seeking behavior.