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    Joined: Sep 2013
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    Hello! I searched for this as a forum topic, but didn't find anything, although I can't imagine it hasn't been asked before.

    My son just turned 3 and we are starting to see a child psychiatrist to better handle his emotional needs. She would like to rule in or out SPD. Some days I am sure he does have SPD and some days I don't see it. Bottomline, we need to just go through the entire eval process.
    Can any of the parents who have been in this position share their experience with testing?

    Also the doctor wants to do genetic testing. I ask, for what? She says, "Just to see if he has any quirky genes." I respond, "How would that inform us? What can you test for?" She says, "Nothing specific, we can just seeing variants." Anyone have genetic testing done?

    Thank you!

    Update: The OT said that he definitely does not have SPD, but what she calls "Sensory Defensive". We have now eliminated just about everything.



    Last edited by GGG; 04/15/14 03:58 PM.
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    I went through the same internal debate as you, and I spoke with my pediatrician, a psychologist who specializes in gifted children, an OT and read everything I could on both issues. Ultimately, the OT as well as my personal research served me best.

    Besides the sensory modulation challenges that may present as OEs, there are many other components to SPD that can be physically tested so the answer may be more objective (e.g. tone, motor planning, gross & fine motor skills, finger position sense, balance).

    Most importantly IMO, our OT evaluation also included an evaluation of regulation and emotional function observed during the OT challenges, because a key component of managing this issue is observing a child's current regulatory capacity and developing a plan to bridge those skills. Are you seeing any other issues such as anxiety and difficulty with transitions? Anxiety can indeed be its own separate disorder or a by-product of a child's reaction to sensory issues and lack of ability to regulate response to those challenges. During treatment, the OT models skills to manage level of arousal.

    I'm approaching this matter as treating the underlying sensory and regulations issues first, and then see if any other issues remain. Each child's situation is different, so your approach may vary.

    I'm not sure from your post in what particular areas your son is challenged, but you may have to see other specialists outside your OT to assess other concerns (ex: visual processing, auditory).

    I don't have any experience with genetic testing requests in relation to SPD, but someone else may have that answer.

    Another key issue is that some professionals believe SPD can be a stand-alone disorder and others believe that SPD isn't a disorder and is only co-morbid with something else such as autism or ADHD. Be careful with both the missed diagnosis as well as the misdiagnosis - everyone views the situation through the personal lens of their experience (including me), but there is significant overlap between all kinds of disorders as well as some aspects of giftedness.

    There are quite a few books that contain information on SPD, but my personal favorites are the books by Lindsey Biel, Lucy Miller as well as the Eides,"The Mislabeled Child". The Eides and Biel also produced a seminar available on video, "Sensory Processing Master Class".

    Best of luck in your search for answers!

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    I'm going to follow this with interest as my son at 2.25 is exhibiting signs of both sensory seeking and avoidance. DS has faced significant challenges around sleep and feeding since infancy. Although we have no diagnosis in earlier generations of our family, on my mother's side there are red flags for SPD going back 3 generations. To start, I've scheduled a consult with DS's pediatrician, and I plan to discuss with her referral to an OT and, if applicable, a developmental pediatrician.


    What is to give light must endure burning.
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    Can you clarify what are his symptoms? What are the behaviors that concern you?

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    Wow. This forum is a lifesaver. Thank you all for responding/following/listening/sharing good resources (love the book suggestions).

    My son turned 3 a few weeks ago. I am a former Special Education Teacher and I have a lot of experience with children who have been diagnosed with emotional and behavioral challenges. So, I have been using the techniques I used for years in the classroom and to help parents and as we approached age 3, I came to the conclusion that I need help, so I asked my pediatrician what to do and she referred us to the psychiatrist. She is also referring us for an OT eval.

    Here is our backstory:
    Our son was colicky, never slept well until about two and still has great difficulty falling asleep. He communicated/spoke/recognized letters/read early. His gross motor was either average or just at the end of the normal expected range.

    He seemed to choke on food easy, didn't latch well at the beginning of breastfeeding but otherwise no other feeding issues.

    His physical development is consistent, he is very large for his age, always 99 percentile or so in height, physically healthy aside from a bizarre severe allergy to dogs, which confounds the doctors (and breaks our hearts).

    Currently, he has probably 5 of 7 days a week in which he has tantrums up to 15 times a day and the duration of at least one can be up to two hours. He has always had difficulty with transitions. He is driven to finish tasks before we move on, if he sees a cabinet door open and we leaving the house, for example, he can't leave until he closes it. If he is enjoying a song in the car, he screams for us to not turn off the car until the song ends. He loves routine, he struggles when our schedule is off. Order is important to him, he enjoys cleaning his room and taking inventory of his books, toys, etc.

    I thought he might have ASD at around 18 months because he was only interested in letters and puzzles (for several consecutive hours). He was always very social and was speaking in sentences and had a vocab of about 100 words at the time so the doctor was sure it was not ASD.

    It was around 2.5 when someone with a gifted son approached me and said that her son was so much like mine at that age and she thinks he's gifted. I checked out a book at the library/researched the topic online and it was beginning to be clear. But I definitely had a denial/shock phase. The psychiatrist said that he is clearly gifted but I still have those moments when it hits me in the gut (all of the anxiety about his future)and I think, "Maybe we are all wrong?" Many of my friends are teachers in the lower grades and they sometimes give me scary looks and say things like, "I have kids in the first grade who can't do that [insert something academic]."

    When the psychiatrist asked about sensory issues, I listed a few things but when I got home, I began to remember: he screamed at every single diaper change until about a year, wasn't into being snuggled, one of his first words was "light" and he obsessed with lights for a year, he always, always, always resists a bath, screamed at every toothbrushing until recently, hates his hair being combed, tells me that he hates certain shirts. One of his first big sentences was, "I want a different shirt". This is all evidence pointing toward SPD.

    We aren't sure if he knows what to say to get out of something like getting his hair brushed so that he can continue doing something he wants to do or if he is bothered by his hair getting brushed. It's so hard to know because he is very emotionally intelligent and uses certain phrases to get out of other things. This is where the question of this behavior being an overexcitibility or SPD.

    The preschool teacher has never seen a tantrum or any sensory issues. Really, we only see these issues at home.

    Tonight we went to a birthday party at a bouncy house venue. The last time we went, a year ago, he would not get into the bouncy houses and only wanted me to tell him how the pumps worked. Tonight's party was a evening one with black lights and music, we were very curious how it would play out. He thought it was great, ran around playing. When it was pizza time, everyone was sitting in a room eating and watching the birthday boy open presents. He jolted out the door down the hallway. I went after him and asked him what he was doing, he said, "I hear someone crying, I need to see if they are ok." He kept running down all of these hallways and at the very end was a toddler crying with her mom. They were so far away and no one else heard her cry. I have no idea what to make of that. Sensitive hearing? Genuine concern? Jolting from the frenzy of the party, hearing a cry and happy to find an excuse to jolt?

    Thank you all again.






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    Sounds like my DD (4), we are getting the full OT eval tomorrow. They suspect SPD

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    I can tell you what my older son was tested for when he had sensory issues at 2-3 yrs. of age. Fragile X. He was delayed socially. Sensory seeking. Language impaired. He talked but was not understood. Non compliant,avoided age appropriate tasks,etc.
    Everything came back fine. He was speach imapired enough to get into local school special needs prek. Speech and social incressed 100%. His last year in prek sensory issues at home were gone. No more sensory issues. No more tantrums, no more delay. He is in 2nd. grade doing above average work, though not gifted.
    My younger child had had no speach delay, walked and talked early, was not sensory seeking and was DX at 2 1/2 with ASD. Or what would have been aspergers before DSM 5 was published.He is 2E, 142 IQ. His only sensory issue is loud noises. He is going into grade 1 and is mostly indistingushable from peers, except for his academic abilities he displays and ear covering at loud noises.
    Opted to not do genetic testing on him since older son had it and all was fine. School eval back then suggested we get Sensory Processing DX on our own, but we choose not to. The school district here considers SPD part of the Autism spectrum.

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    Wow - I have a friend that has a son with fragile-X - what therapy was used to help him?


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    Originally Posted by GGG
    I came to the conclusion that I need help, so I asked my pediatrician what to do and she referred us to the psychiatrist. She is also referring us for an OT eval.

    Our family's experience is that an OT is usually going to come back with suggestions of SPD, whether or not that is the underlying issue. I'd recommend a neuropsych eval to look more fully.

    Originally Posted by GGG
    Currently, he has probably 5 of 7 days a week in which he has tantrums up to 15 times a day and the duration of at least one can be up to two hours. He has always had difficulty with transitions. He is driven to finish tasks before we move on, if he sees a cabinet door open and we leaving the house, for example, he can't leave until he closes it. If he is enjoying a song in the car, he screams for us to not turn off the car until the song ends. He loves routine, he struggles when our schedule is off. Order is important to him, he enjoys cleaning his room and taking inventory of his books, toys, etc.

    I thought he might have ASD at around 18 months because he was only interested in letters and puzzles (for several consecutive hours). He was always very social and was speaking in sentences and had a vocab of about 100 words at the time so the doctor was sure it was not ASD.

    What kind of doctor was that? Forgive my skepticism, but I'm skeptical-- your description here sounds very much like ASD, and I would want to see a specialist.

    Our 2E ASD child (Verbal IQ > 99.9 percentile) had no substantive language delays, and yet is very clearly autistic.

    I'd seek out someone who specializes in autism and ask them to rule in/out. Make sure they do the ADOS.

    Originally Posted by GGG
    The psychiatrist said that he is clearly gifted but I still have those moments when it hits me in the gut (all of the anxiety about his future)and I think, "Maybe we are all wrong?" Many of my friends are teachers in the lower grades and they sometimes give me scary looks and say things like, "I have kids in the first grade who can't do that [insert something academic]."

    It is perfectly possible to have a developmental difference and yet be gifted. Even extremely so.

    "Overexcitabilities" are IMO too often used to explain away things that would be better dealt with directly.

    Originally Posted by GGG
    When the psychiatrist asked about sensory issues, I listed a few things but when I got home, I began to remember: he screamed at every single diaper change until about a year, wasn't into being snuggled, one of his first words was "light" and he obsessed with lights for a year, he always, always, always resists a bath, screamed at every toothbrushing until recently, hates his hair being combed, tells me that he hates certain shirts. One of his first big sentences was, "I want a different shirt". This is all evidence pointing toward SPD.

    Or ASD, which embraces these issues plus trouble with transitions, need for order, need to finish tasks, etc. Needing to finish tasks isn't "sensory"-- but very typical of kids with ASD. I'm not diagnosing your child over the Internet-- no one should-- but I do think you should seek further expertise.

    We did well to see a doc at a children's hospital autism clinic, one who'd seen thousands of kids and was very well tuned to rule autism in or out. You want that kind of expertise.

    Hang in there. It gets better.

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    Originally Posted by madeinuk
    Wow - I have a friend that has a son with fragile-X - what therapy was used to help him?
    Tests came back fine. He did it have it. But it was what our ped neuro wanted to rule out.

    The prek was blended with all types of kids. Small class,1 teacher and 1 para with 10 kids back then.

    My aspie was high functioning enough to attend same prek.

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