Questions about DD & what to expect at Developmental Ped.? *UPDATE!!*

[WindyCityMom]

My daughter, N, 3y1m, has an appointment on Tuesday with a Developmental Pediatrician.  Our family doctor referred us there.  What should I expect?

She has several issues.  Can anyone here help me make sense of them?  Also, what should I bring up at the Ped's office? 

-Extreme social anxiety.  DD literally shuts down in social situations, and becomes mute (even with me) and will not make eye contact.  Her entire body becomes stiff and she almost seems to regress developmentally for that moment.

-Severe dermatillomania.  She picks and picks and picks at her lips, skin (belly, legs, sides) and nails until she bleeds, and keeps doing it.  Her nails are kept very short (and she still complains about them being too long and picks and picks at them.  She had MRSA on her scalp due to the picking :(

-Severe issues with water touching her face.  She reacts as if it's acid.  It's extremely difficult to bathe her, she cannot tolerate it.

-Issues with "icky" things.  Foods included.  She has a very difficult time when she sneezes- she freaks out and is incapable of wiping her own nose- she is just very distressed with it.  Wipes hands multiple times when eating.

-Above average sensitivity to hot and cold (foods, weather, bath water).

-EXTREME insatiable hunger.  Bloodwork was done, don't have the results back.  I'm wondering if she feels like she needs the full sensation.

-VERY overwhelmed by noise and crowds.  Will eventually go into her own world and block everything out, including people talking to her directly.

Some other things
-Gets fixated on certain objects (toys) for days at a time and will play with nothing else.

-Extremely territorial and posessive, does not share or take turns.

-When playing, things must be a certain way.

-Will usually not play with other children.  When she tries it seems awkward for her.

-Will color for hours at a time- will color all day long if we let her.

-Will draw hundreds and hundreds of things on her paper (circles, "N"s, stars, etc.) .  When her paper is used up, she gets a new one.  She has notebooks filled with these drawings.  She is capable of drawing a wonderful very detailed face with eyebrows, pupils, facial hair, etc. but won't do so- she only draws the above mentioned things (right now it's "N"s).

-Lines up toys frequently.  Also puts things in bags constantly.  Takes them out, puts them in, takes them out.  Repetitively.

-Has issues making eye contact.  Usually will, but her eyes don't remain there for very long- it is hard to get her to have constant eye contact for more than a few seconds.

-Very unathletic, to say the least.  Has issues climbing, always has, and needs help doing so.  VERY scared of falling, but does take risks occasionally (hangs off of the side of the couch, etc).

-VERY clumsy, walks into walls, trips a lot, etc.

-Has trouble regulating the loudness of her voice

I have noticed some arm/hand flapping... I've got video that I need to post.

What do you make of my DD?  I'm sure there are some sensory issues going on but is there anything else that stands out to you?

[SilverLace]

It's a good thing that you have the appointment.  Our was with a neuropsychologist, so maybe it will be different, but basically she tested my step son with a wide variety of tests and gathered data from parents and teachers.  He was 8 at the time and went twice for several hours each time.

I would just say up front that you want them to be very thorough- and if they are good they will be- these types of assessments are a big part of what they offer families (as you might sadly find after you are more on your own figuring out the right interventions).

As for what is going on with your DD.... I'd be very cautious to say having never met her and just reading one post.  It is clear that she needs this evaluation and I hope that it helps.

Going for the evaluation was pretty emotional for my DH, understandably, and it takes time after to integrate it all. 

[WindyCityMom]

Thanks so much!

[shelbean91]

We just had my ds2 at the developmental ped where he was dx'd with autism.  They are very, very thorough - we were there with the physician's assistant for 2+ hours the first time, where she asked me lots of questions, asked him lots of questions, and did many, many observations.  The next appt was with the actual ped, where he went over all the results (we had to fill out LOTS of questions ahead of time, as did his teachers - he's 6).  He gave me tons of paperwork to read through, did more observations and asked what I wanted from the appointment.

I was certain he was on the spectrum, as my 8 yo was dx'd when he was 2 1/2.  I'm very familiar with autism, but my ds2 presents very differently than my ds1.  In AZ, if there is an autism dx, we get therapies paid for by the state - therapies that would be $100+/hr out of pocket. Between my 2 boys, they have 8 hrs of therapy a WEEK.  Here, under 6 can get those therapies by being 'at risk' for autism, but over 6 needs a real diagnosis.

So, I told him I needed to confirm the dx of autism so I could continue getting therapies from the state.  In addition, we've been having extreme challenges at school, and I wanted to discuss the options of medication.  I'm very much a 'medication as a last resort' but we're quickly getting to the last resort.  He's had 2 years of preschool, a year of kinder, and most of 1st grade and the issues we have keep getting bigger.

Not being a medical professional, but a parent of 2 with autism and a teacher, I'd say you have many symptoms of autism - but I'm not qualified to dx in any way.  The social anxiety, the water aversion, the flapping, the lining up, the clumsiness, etc., are all signs to me.  My ds2 had a slight speech delay, has a HUGE aversion to bugs, freaked out if water got in his face during a bath, needs things EXACTLY as expected (had a meltdown at school b/c the sub used the blue math book before the purple math book - now, I have no idea exactly what that means other than I know they have math broken into 2 sessions), he's very clumsy, doesn't respect personal space, etc.

So, if you have a specific concern, such as autism, sensory issues, etc., be sure to bring that up.  That shouldn't make too much difference in their evaluation, as they should start more general, but ours started with 'what are your concerns' and we went from there.

[Stephenie]

When we went, they planned ahead of time to do an ASD specific test, the ADOS because they had a short list of symptoms that my son experiences that all pointed to something on the spectrum. Between the test and the questioning, we were there about two hours. At the end, the doctor told me that my son has Asperger's, told me a bit about it and let me ask a few questions.  A follow up appointment was set up after the diagnosis so I could further discuss it with the doctor. That one was about an hour.  I brought a list, much like the one you posted here to his first appointment and it helped me remember what my main concerns were and the doctor said it was really helpful in diagnosing him.

Good luck with your appointment! 

[WindyCityMom]

thank you SO much!  (all three of you!)

I sometimes second guess myself because DD is very, very verbal.  She reminds me a lot of a girl in a YouTube video: www.youtube.com/threeredheads who has Aspergers.  This girl is also very very verbal (I did some googling as well, and I messaged her mother on facebook to see how the girl is doing and asked some questions...).  I had always read that ASD kids are NOT verbal and don't make eye contact.  I'm guessing DD might be borderline?  Not sure...

Anyways, thank you all so much.  I hope it's okay that it's only myself and my DD present.. my husband needs to stay with the baby because we won't have a car and will have to take the bus- baby doesn't do well with the cold and it's easier to just take one kid.  I have my list made up though, so hopefully it helps.

[Emmeline II]

Originally Posted by WindyCityMom 

thank you SO much!  (all three of you!)

I sometimes second guess myself because DD is very, very verbal.  She reminds me a lot of a girl in a YouTube video: www.youtube.com/threeredheads who has Aspergers.  This girl is also very very verbal (I did some googling as well, and I messaged her mother on facebook to see how the girl is doing and asked some questions...).  I had always read that ASD kids are NOT verbal and don't make eye contact.  I'm guessing DD might be borderline?  Not sure...

Asperger's is atypical eye contact (not none) and normal cognitive and language development (the latter two is what differentiates Asperger's from Autism).

[Stephenie]

My kiddo with Asperger's makes some eye contract (a lot like what you described in your post actually, won't maintain it) and is verbally advanced. As the above poster said, normal language development is what distinguishes Autism and Asperger's.

Almost no one fits every typical ASD symptom, that's what it's a spectrum with a wide variety of symptoms and abilities. 

Good luck with it all, I know how stressed out you probably feel right now. For me, waiting for the appointment was the hardest part of the whole process. 

[chiefmir]

Just wanted to chime in the the developmental pediatrician appointment is probably going to be 2-4 hours- depending on whether they do all the observations/interviews in one session or break it up into two (most I know do one session, with a second- shorter- meeting later on to discuss diagnosis).  It is different froma neuropsychological evaluation which can easily run 6-8 hours (usually broken up into two sessions). In my experience, there are (relatively) few neuropsychologists who see under school age (5-6 year old) kids.

Asperger's is often differentiated from "high functioning autism" (which is a pretty non-descriptive term, IMO) by the speech development.  Usually, early speech development is normal to advanced.  The issues who up more with the pragmatic aspects of language-- knowing how to start/continue/stop a conversation, NOT only discussing ones own interests (often the kids speak like "little professors"), not understanding the reciprocity of language and conversation, missing the non-verbal cues of social conversation (inflection, voice modulation, facial expressions, gestures,etc.) and concrete use of langauge (i.e. not understanding idioms, metaphors, sarcasm, jokes, double meanings, etc.)

I hope the evaluation give you some of the answers you need!

[SilverLace]

Just chiming in to agree with other posters... my step son makes eye contact (not normal, but brief) and he is highly verbal (as he has gotten older we can see his how limited his functional and reciprocal language are, but that is hard when they are little).  Like many, I think, we have too much talk about the special interests, and very little (to sometimes no) talk about other things.

I've heard some providers get fixated on the eye contact aspect.... but the DSM doesn't say no eye contact, it says "marked impairments".

[WindyCityMom]

UPDATE!

We have a diagnosis.  Two, actually.  Sensory Processing Disorder (I figured) and Asperger's.  I'm now waiting for a phone call so that I can schedule an eval. with OT. 

If anyone needs more info (now or in the future, if you happen to stumble across this post while searching) feel free to PM me.  I'm just so exhausted to go into everything.

[Linda on the move]

Originally Posted by WindyCityMom 

UPDATE!

We have a diagnosis.  Two, actually.  Sensory Processing Disorder (I figured) and Asperger's.

I feel like we should have a private little club for moms of girls with Asperger's.  Did you know that boys are dx'ed as being on the spectrum about 10 times more often than girls?  How are you doing? How are you feeling? Do you need warm fuzzies? Book recommendations? Assurance that she has a great future?  You don't have to go into everything, just let us now how to be supportive.

[nayma]

i'm going to totally agree with linda, and say that i want a club for girls with asperger's .  i feel like i meet girl aspies in real life, but they are sooooo underdiagnosed and misunderstood.  the thing my dd says most often re: classes we attend - "mama, why aren't there more girls?"  :(.

and, yes, how are you?  this may have come as a relief, a shock, a little of both.  please remember that there's a lot of change probably going on in your head right now, but your little dd is the same girl she was before the diagnosis.  please pm any of us for support, etc.

[~Charlie's~Angel~]

Wow, OP.  You have so much on your plate.  I hope you and your daughter are receiving the love and support you deserve.  Many hugs to you.  Now is the time for healing and learning.  PEACE!

[Kalebs Mommy]

Hi all.

My son has his first appointment with his Developmental Ped. in one week.

After reading everyone's replies, it seems that the majority of what they are seen for is Autism. My son does not have Autism; he has Pachygyria and my husband and I were looking for help with his behavior/impulse control.

Has anyone seen a DP for this anything like it?

Thanks!

[mopdop2000]

We took our DS2 to a Child Development Clinic at Denver Children's Hospital b/c no one is small town CO seemed to know what the deal was with him. This clinic is for all kids with developmental issues, even though he was actually diagnosed with autism (which is questionable) and Fragile X Syndrome (which is genetic and explains all the autism symptoms). At his first appt. he was evaluated by a Dev Ped, ST, OT and PT - all of which he was already seeing. They made recommendations for his therapists based on their experience of kids with similar challenges.

His Developmental Ped he sees also recently diagnosed him with ADHD too and I feel like she has a handle on his whole person.

So, what I am meaning to say is that Developmental Ped's deal with a whole range of things and should be able to make recommendations for necessary therapies etc.

[Kalebs Mommy]

We just had my son's first appointment with his DP and she-much to my shock-diagnosed him with Autism!

This is not what I expected and it doesn't feel right to both my husband and myself. I don't want to doubt her-she seemed like she know exactly what she was talking about.She was very helpful and informative. I am going to wait a few days for all of the information she gave me to sink in, but my gut tells me this isn't him. Could it be denial? So far my mommy instincts haven't let me down.

Is there anyone else who feels that their child has been misdiagnosed or found out that they actually did receive the wrong diagnosis?