What happened at your pediatric neurologist evaluation? possible DX

[Thing1Thing2]

What happened at your child's first appointment and what tests did they order? My appointment was orginally not till next month, but now it's been bumped up to this Monday!

I'm wondering what to expect, what tests to ask for and what to prepare?

I have some of his episodes on videotape. Should I bring that?

Edited by Thing1Thing2 - 11/9/11 at 9:24pm

[countryduck]

I would like to know this too.  We have our first appt in about 6 weeks.  I don't really have much on video right now myself.  I need to get prepared!!!  Hope someone comes along and answers this.

[FarmerBeth]

We had a very in depth interview about background (family members past issues, developmental milestones, what issues were most concerning now).  Then we were given behavioral rating sheets, and the school was also given behavioral rating sheets (preschool teachers or other caregivers are sometimes given rating sheets if the child is younger).  I was directed to which tests to ask for (actually, everything was coordinated by the hospital neuro-developmental pediatric team, so I was really lucky, I didn't have to do too much arranging all by myself).  There were hearing tests done, auditory processing tests (also done by an audiologist), SLP assessments, and occupational therapy assessments.  We also had behavior rating scales to do for these last two, and so did DS's teachers.

If bringing the videotape helps you feel like you can explain your child better, I don't see why not.  I think all you can do to prepare is bring your spouse if possible, and if not find out anything where you aren't on the same wavelength about your child.  Make sure you know about any family medical conditions, and if he's had any previous assessments done, bring them along.

The only other thing I can say is give yourself a little time cushion around the appointment so that you can relax more and have some time to process any new info.  Good luck to you!

[Thing1Thing2]

Thanks for the advice, FarmerBeth. I will give myself a little time to relax before the appointment. I've worked so hard to get this appointment that I don't want to mess it up!

[FarmerBeth]

You're welcome!

[Thing1Thing2]

Okay, so we went to the Ped Neurologist today and at first glance she didn't know why we were there. He knew all the answers to the questions and named all the colors and counted. She even commented on him having a "large" vocabulary for his age.

When we started telling her about his sensory issues, she realized why we were there. She ruled out autism because his language is so advanced. She didn't rule out PDD-NOS or SPD. She said the two conditions for PDD NOS were exhibited and so that couldn't be ruled out. One of the conditions was "parallel playing". He doesn't really interact with his friends, he just plays beside them.

She also had him do a few tests. She tried to have him push against her hands with his legs, and he was very weak. She mentioned that he sits like a "W" as well. She also noticed his thumb was bending backwards quite a way and called that something else. but I forgot what she called it. So, she referred us to an occupational therapist and a school of some sort that is supposed to have a "sensory gym."

I already have an appointment with another OT tomorrow night and my insurance is covering it. But maybe we will go to both OT's. I'm also interested in the sensory gym as I know DS will love it.

He was very well behaved in her office. I was hoping he would show his wild and uncontrollable side, but of course - this is the one time he's ever been an angel at the Dr's office! 

[FarmerBeth]

I'm glad you are seeing the OT, too.  A sensory evaluation should help clear things up.  Our DS was ruled out rather rapidly for autism when we first saw the doctor when he was a preschooler for the same reason as yours (great verbal ability), and because he verbally handled social situations when he played (like being able to respectfully tell others if they were doing something that made him uncomfortable, or being able to play a make believe game with his sister), the other issues like response to sounds and stimulus, getting stuck on an activity and being completely incapable of transitioning, tics that were sometimes more rhythmic like stims, were brushed aside and put into ADD and tic disorder camps.  I think that if he had seen an OT sooner, the pediatrician would have had more info to know where I was coming from (more info made a lot of difference this third go around of evaluations.  It's good your pediatric neurologist is taking his sensory needs seriously.  You might also want to see if you can have someone (actually it was the OT who did this for us) watch his behavior in a group setting where he has to deal with more sensory and social stimulation.  The standard sensory processing scores include scoring on social and thinking (things like imagination, rigidity, etc) issues as well as the more expected ones of gross and fine motor, proprioceptive (balance), auditory and visual processing and over and under sensory sensitivity.

Sounds like things are on the right track!

[Thing1Thing2]

We saw the OT today and it went okay. I was expecting to get some kind of a diagnosis, but all she told us was that he has sensory issues and needs therapy. His first appointment is next Monday. It seems like this will help him, at least until we can get him registered at the school district and get him a possible diagnosis. I know he has sensory issues, but I'd like to find out what is behind all of this? The neurologist said possibly PPD-NOS or Aspergers.

There were alot of issues that came up during the eval. For one, he started stimming and I'm glad she caught that. Also, it seems he has low muscle tone. And also a few times the OT tried to get him to do something like stack blocks, but he wanted to play his way and was very adamant about "correcting" her. "No, the blocks need to go in two lines, not a tower".

The "gym" they showed us that he will be working in didn't have much in it. Just a swing and a trampoline. There may have been other items hidden in cabinets - but I was disappointed that they didn't have a little more equipment. But I dont know much about this, so I'm just going along with it.

Thanks for the info FarmerBeth, yes I think things are on the right track! So sorry your LO didn't get the help he needed right away - that must have been so hard. Glad he's getting the help he needs now. It's difficult water to navigate, especially being new to all of this.

[FarmerBeth]

I think they might take a little longer to narrow down an exact diagnosis at your son's age, anyway, but a round-about one can do you fine for now since it seems the therapies are getting put into place.  I do some teacher's aide work and I see lots of trampolines and swings in the sensory rooms.  They're supposed to be good for developing rhythm, proprioceptive (balance sense) and overall muscle tone, and a lot of kids seem to need the movement to get their sensory needs attended to.  DS seems to thrive on lots of swimming and fine motor fidgets; it takes a while to figure out what kids need.

[Thing1Thing2]

DS hates swings, trampolines and anything that takes him into the air, so I'm not sure how he's going to do on the equipment. I'm wondering if he will even get on it!

He does love swimming too, and motor things.

I'm thinking you're right about finding a diagnosis at his age. I was hoping it would be a little more clear.  What was your son's diagnosis, if you don't mind me asking? I know you said ADD, but I think you said they got a better diagnosis later on?

[babygirlie]

They will get to know him and see what he enjoys and work off of that. There may be times they want him to protest to get a certain reaction t hough so don't be surprised about that.

We don't go to the school gym we go to the hospital one. It's mainly play time. At first they had these foam stairs and ramp and they took her up and run her down as best as they could then they went to the trampoline which she was carried on. There are several types of swings but all in our gym are like 6 inches from the ground. One is 3 feet by 3 feet and the teacher sits in front of her and swings or sits on it with her. There's another one that's like a foam square log which she has let go of the rope and fallen backwards but its not like she's swinging more than a foot or two away from teacher and was caught. The cabinets are stuffed full of toys and they try to make her do wooden puzzles which she despises and makes her cry but the one teacher makes her finish. They also have  sand box full of beans.

It's all about playing at this age and there isn't a whole lot of pushing but just enough

[Emmeline II]

I don't know if I mentioned this on your other thread, but I'd try a developmental-behavioral pediatrician. We took ds to a hospital clinic and got detailed eval; the appointment was 3hrs. and he saw the developmental-behavioral ped, a speech language pathologist, and psychologist -- though ds was 6y 11mo at the time; I don't know what the appointment for a younger child is like.

[FarmerBeth]

Originally Posted by BonnieNova 

DS hates swings, trampolines and anything that takes him into the air, so I'm not sure how he's going to do on the equipment. I'm wondering if he will even get on it!

He does love swimming too, and motor things.

I'm thinking you're right about finding a diagnosis at his age. I was hoping it would be a little more clear.  What was your son's diagnosis, if you don't mind me asking? I know you said ADD, but I think you said they got a better diagnosis later on?

His original diagnosis was Tourette's spectrum disorder (usually it takes a little linger for doctors to give and outright diagnosis for full fledged Tourettes syndrome) with ADD (inattentive type) and OCD as part of the disorder, co-morbid anxiety and non verbal learning disability.  The second evaluation reconfirmed Tourettes but disputed non verbal learning disability as the second IQ test didn't have quite that pattern (definite problem with fine and gross motor and processing speed is common in NVLD, but strong math and visual patterning abilities are not), so the idea was that the social skill and processing speed problems were secondary to ADD.  By this year's evaluation, the social skill problems were way more prominent because at age 11 some types of social problems are much less common than in a 7 year old.  Also, his behavioral scorings no longer pointed to ADD, even though he had been off medication for half a year, and the flavor of the OCD and the tics was not looking typical to Tourette's.  We had an initial informal diagnoses of Asperger's by the school SLP and the psychologist, and if we have formal confirmation we'll know for the end of next week.  I think when there are disorders with a lot of overlapping symptoms (like Tourette's and Asperger's) the diagnosis can be tricky, and they are both disorders where it can be easier to confirm at an older age.  I think if you can get a head start in the basic right direction at your son's age, it's a lot smoother for schooling and parenting.

[Thing1Thing2]

My DS was not approved for special ed services!! But I'm concerned because I know he needs the help. He showed some autistic behavior, but his intelligence was rated "superior" and this knocked him out of the window for help.

Evaluations with the school district included:

Psychologist

Speech Therapist

Occupational Therapist

Bear in mind that he has already had an evaluation with a private OT and is getting OT  once a week through our insurance right now.

-The speech therapist said he is "bright" he is currently 2 years ahead in speech.

-The Psychologist said he seems to be neurotypical, but she did notice there were some strange behaviors that concerned her. For instance, he has poor eye contact. Also, he couldn't answer a question properly when she asked him. He had a hard time asking her what type of ice cream she liked. He "told" her that she liked chocolate without even knowing. she also noticed some other "autistic" type behavior. He is 1 year ahead in math and puzzles.

-The OT noticed he had poor motor skills, especially grasping. She rated him at the 5 percentile for motor grasping. She noticed he was very persistent and this is what helps him succeed.

His IQ was rated at 98 percentile, but he also scored "very likely probablilty of autism" on the vineyard test.

They said they need to observe him in a preschool setting in order to really get a take on his abilities. I have enrolled him for daycare for a month at the agency where he was evaluated and they will do a final evaluation at the end of October to see if he qualifies. I have no doubt that he *should* qualify, but I'm not sure that with the way they scored his intelligence if he will.

I just hope he shows his behavior in the day care setting this October.

[Thing1Thing2]

NAK - Hi Farmer Beth. Sorry I didn't reply to your post earlier. It's been a crazy couple of months and I missed your reply.

Thanks for telling me about your DS's diagnoses. I have a feeling it's going to take a while with DS too. He was recently evaluated and scored as typical. But his behaviors at home were much different than he showed at the evaluators. He mostly stims and has problems with emotional regulation when he's bored.

Thanks again - I'm beginning to see how an accurate diagnosis can take a while.

[Emmeline II]

Originally Posted by BonnieNova 

My DS was not approved for special ed services!! But I'm concerned because I know he needs the help. He showed some autistic behavior, but his intelligence was rated "superior" and this knocked him out of the window for help.

Hmm...I wonder about the school--children with high IQs are not excluded from special education eligibility. Ds' first school told me that he wasn't eligible for Child Find because he didn't have articulation issues  .  Though "Special Education" isn't just about academic help, it also covers speech therapy (for social reciprocity and pragmatics, not just articulation), OT, and behavioral support/legal protections. I wasn't involved with the school when ds was that age, though now at 7yo, with average to above average intelligence and at/above grade level in all subjects, ds STILL qualifies for special education as OHI--so I wouldn't accept without question what the school tells you -- whether it comes from ignorance or self-interest, schools often give inaccurate information..

Wright's Law: From Emotions to Advocacy

Tips for Parents: Meeting the Needs of Twice-Exceptional Children

The Child Find Mandate: What Does It Mean to You? - Wrightslaw.

Passing grades, IQ scores...

 

[Thing1Thing2]

I think in this case it covers self interest. They kept mentioning how they are not "required" to help unless DS's issues would cause problems in a preschool setting. I took that to mean that they are trying to prevent any issues in school, not help my DS. Even the psychologist said that he could use the help, but she didn't know how to "sell" it to the school district because he didn't fit into any of the special needs categories. I feel that the evaluators didn't want to look bad to the school board.

Thanks for the links. May I ask what OHI stands for?

[Emmeline II]

Originally Posted by BonnieNova 

I think in this case it covers self interest. They kept mentioning how they are not "required" to help unless DS's issues would cause problems in a preschool setting.

I took that to mean that they are trying to prevent any issues in school, not help my DS. Even the psychologist said that he could use the help, but she didn't know how to "sell" it to the school district because he didn't fit into any of the special needs categories. I feel that the evaluators didn't want to look bad to the school board.

Thanks for the links. May I ask what OHI stands for?

That is what the law is intended to cover, though I would think they would say he did not qualify instead of repeatedly saying they're not "required" to offer services. OHI means "Other Health Impaired" under IDEA, for which PDD-NOS should qualify (I think--I would expect a detailed explanation from them if they said it didn't). If you have not shown the neurologist's report to them, I'd consider it; or ask the neuro for a summary of the report geared to the school and how your ds' issues will affect learning. They don't have to take a private eval over their own, but if there is a conflict and your ds is denied services I think you can appeal and they may have to pay for an outside eval (from what I have read, I don't have personal experience with this part). "From Emotions to Advocacy" details this type of thing in one place (though most of it is probably on their website); the e-version of this book is cheaper.

I don't have time to find the actual law right now, but the link below is a summary of IDEA:

IDEA (The Individuals with Disabilities Education Act)

The categories of disabilities are; autism, deaf/blind, deafness, hearing impaired, mental retardation, multiple disabilities, orthopedic impairment, serious emotional disturbance, specific learning disabilities, speech or language impairment, traumatic brain injury, visual impairment including blindness, and other health impairment. To be eligible, a student must have a disability that adversely affects her or his educational performance and must need special education in order to receive an appropriate education. 

http://www.webmd.com/add-adhd/guide/adhd-causes

Under IDEA/IEP, if your child has a disability that adversely affects educational performance, your child is entitled to an education that is designed to meet the child's unique needs and from which your child receives educational benefit.

A 504 is helping your child get the same education that everyone else is getting--more for a student that needs accommodations to help them learn (like sitting next to the teacher) or for behavior, and that they are not punished for things that they cannot control due to the ADHD (like needing to work standing up or not sit inside a group).

[A IEP or 504 is not an escalation or punishments for the teacher/school. It's more about getting all appropriate parties involved and on the same page. The student, parent/legal guardian, teachers, principals, Pupil Services administrators, support staff (i.e. nurse, counselor, psychologist, language/speech pathologist) as well as the student's physician or therapist may be involved in the placement process including the 504 meeting.]

Key Differences Between Section 504, the ADA, and the IDEA.

(http://www.wrightslaw.com/info/sec504.summ.rights.htm)

Edited by Emmeline II - 9/24/11 at 10:56am

[FarmerBeth]

Hi BonnieNova!  Keep the dialogue going with the preschool as much as possible.  Any accommodations that your DS was not yet approved for may become more obviously necessary in a group, school setting as well as more obvious with age.I know that my son is by far not the only child I've met where because of higher IQ and high verbal ability, autism spectrum disorders were not even considered.  However, the more frequent and intense the social interactions, and the older the child and the higher the expectations, the more obvious special needs become.  The input of the preschool teachers, and later the classroom teachers, could be what helps to show that your son does require some special services.  Get as informed as you can as to your child's educational rights, and then keep at it no matter the outcome. (By the way, DS does have the formal diagnoses now, of ASD, although we were told by the old diagnostic system it would have specified Aspergers, now they are just saying ASD and naming strengths and weaknesses.  Like your DS, he was ahead by a couple of years in verbals, in the 5th percentile in fine motor, but also a slow processing speed, gifted patterning, logic and math.  Bright kids are hard to diagnose, but not impossible, so keep involved if you know something is up!)

[khaoskat]

I would ask for your child's specific test scores.

For instance, speech testing is usually made up of 3 tests..

1) Articulation

2) Receptive

3) Expressive

My son currently has an articulation disorder diagnosis (previous was I believe Speech Apraxia).  While he has always scored high on Receptive, his last testing at the transition from Pre-school to school aged services put him on an almost 3rd grade level for Receptive.  He has had huge strides in his Expressive and I believe is now on grade level.  But his articulation is behind.  It is at least 2.5 deviations behind.  His combined speech puts him right on target...but he still qualifies for an IEP due to his Articulation problems.

So, what is important to know is his individual test and subtest scores, and where each of those put him on the scale.