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  1. #1
    ArizonaGirl is offline Sapphire level (2000+ posts)
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    Default Update and more questions!! DS behavior and a starting place

    UPDATE!!!
    We spoke with the psychologist today and he seemed to think that some of the behaviors DS exhibits are "outside the range of normal," and he mentioned OCD and ADHD as possibilities. He suggested that we make an appointment with a psychiatrist for an evaluation and testing and make an appointment with the school district to have a preschool evaluation through ESS (they evaluate gross and fine motor skills, speech, and social skills). We have another appointment to discuss coping skills in 2 weeks.

    I am a little bummed that we have to go through so much testing and other appointments, but hopeful that maybe we are closer to helping my little man deal better with life.

    ************************************************** ************************************************** **********

    Not sure if I should post here about this or not, but here it goes...

    DS has always been a very emotional, high-needs child and he has recently been having some impulse-control issues at school. This has led us to schedule an appointment with a psychologist specializing in children. I made a list of the behaviors below that we are going to address with him.

    1. He has no tolerance for frustration. He gets angry very easily and seems to escalate from 0 to 60 in seconds. He then screams and cries and then depending on the situation hits, or kicks.
    2. He seems to have trouble distinguishing between his emotions, like he almost doesn’t realize what an appropriate response for something is. (ex: I shut the fridge door and he wanted to do it so then he pitched a fit and yelled and screamed because I shut the door and he wanted to do it)
    3. His teacher has said that when he is really frustrated or angry and it lasts for more than a few moments, she noticed his head leans to the left and it appears stuck that way for a while after he calms down. He does not seem to notice it and it is only slight
    4. He still has at least 1 pee accident every 2 weeks and he has been potty trained for almost 2 years. It is like he gets so focused at what he is doing that he forgets or ignores the fact that he has to go potty
    5. He gets so focused in tasks that he seems to almost be absorbed in his own world and you can talk to him and he doesn’t respond, or even seem to hear you
    6. He seems to get very fixated on things (ex: he has to have his favorite corner on his blanket, everything has to be done a certain way, like getting dressed (shirt has to go on a certain way), teachers have commented that he yells and bosses other children around because they “aren’t doing something the right way.”)

    Should I be trying to address any other issues? Are there any other basic questions that I have missed mentioning? Do you all think this is the right person to start with for these problems or should I start with someone else? His pedi is the person who suggested this psychologist?

    I am sorry I guess I am rambling a bit, but my mind is just whizzing with thoughts right now.

    TIA
    Last edited by ArizonaGirl; 04-30-2013 at 10:46 PM.
    Lindsey

    Married to DH June 2005 gave birth to Shawn December 2008 and Lilian August 2012




  2. #2
    Melbel's Avatar
    Melbel is offline Diamond level (5000+ posts)
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    I am so sorry that your son is struggling. What you described sounds like PANDAS or PANS. OCD type behavior along with tantrums/rages are hallmark symptoms.

    Here are some resources for PANDAS:

    https://word.office.live.com/wv/Word...PANS+Scale.doc

    http://pandasnetwork.org/resources-new-research/ (there is a list of providers on this site)

    http://www.pandasresourcenetwork.org


    Many children with PANDAS/PANS are also testing positive for Lyme Disease (Lyme can trigger PANS symptoms)

    See post #56 here for recommendations on Lyme testing: http://windsorpeak.com/vbulletin/sho...=388630&page=2

    Discussion of Lyme and PANDAS (overlapping symptoms, etc.): http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3292400/

  3. #3
    Gena's Avatar
    Gena is offline Emerald level (3000+ posts)
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    I suggest that you meet with the psychologist and also ask your ped for a referral to a developmental pediatrician. A dev ped can test for and rule in/out medical based disorders, including underlying illness, vitamin deficiencies, metabolic issues, etc. If needed, a dev ped can refer you to a neurologist or other specialist. Unfortunately, dev peds often have long waiting lists for new patients (we waited 6 months to see ours the first time). So get on the list as early as possible - you can always cancel if the issues resolve. In the meantime do the appointment with the psychologist and see what he/she has to say.

    Hugs.
    Gena

    DS, age 11 and always amazing

    “Autistics are the ultimate square pegs, and the problem with pounding a square peg into a round hole is not that the hammering is hard work. It's that you're destroying the peg." - Paul Collins, Not Even Wrong

  4. #4
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    Most of those things you listed are characteristics of my son (not officially diagnosed autism spectrum disorder). How is he at socializing with other kids?
    DS1 - 8/09
    DS2 - 9/11

  5. #5
    ArizonaGirl is offline Sapphire level (2000+ posts)
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    I'm sorry, I have just not had much time to respond.

    Melbel, I had not thought about infection, so I will have to look into that further.

    Gena, I will leave the pedi a message about a referral to a developmental pedi and try to schedule an appointment even if it is down the road.

    Indigo99, he seems a little awkward in social situations, but I can't quite put my finger on exactly how, KWIM. He is very shy and clingy, particularly around strangers and new kids that he has never met before.

    Thanks for the replies everyone, I appreciate it.
    Lindsey

    Married to DH June 2005 gave birth to Shawn December 2008 and Lilian August 2012




  6. #6
    Gena's Avatar
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    Quote Originally Posted by ArizonaGirl View Post
    UPDATE!!!
    We spoke with the psychologist today and he seemed to think that some of the behaviors DS exhibits are "outside the range of normal," and he mentioned OCD and ADHD as possibilities. He suggested that we make an appointment with a psychiatrist for an evaluation and testing and make an appointment with the school district to have a preschool evaluation through ESS (they evaluate gross and fine motor skills, speech, and social skills). We have another appointment to discuss coping skills in 2 weeks.

    I am a little bummed that we have to go through so much testing and other appointments, but hopeful that maybe we are closer to helping my little man deal better with life.
    I understand how hard it is to go through all the testing and appointments when what you really want is an answer now. It's frustrating.

    However, getting an accurate diagnosis is a process, not an event - especially when a child is so young. I have a lot more respect and trust for doctors who take the time to order a thorough evaluation and look at several different possibilities than a doctor who will give a young child such a serious diagnosis after one appointment. Many doctors will not diagnosis OCD or ADHD in a child under the age of 7, so it's important to look at what else might be going on.

    The diagnostic process with DS took about 5 months (and that was after the 6 month wait to even see the dev ped the first time). And even after getting the diagnosis we have done additional testing to rule out other things.

    The main thing is that while you are in the process of getting all the evaluations done, you make sure have support (from your medical specialists as well as from family/friends) and you develop techniques to address the behavior/issues. Coping skills are a good place to start and you can work on this even before you get a solid diagnosis. Once you have a confirmed diagnosis, that might open doors to resources and help you fine-tune your plan.

    Hugs . Hang in there.
    Gena

    DS, age 11 and always amazing

    “Autistics are the ultimate square pegs, and the problem with pounding a square peg into a round hole is not that the hammering is hard work. It's that you're destroying the peg." - Paul Collins, Not Even Wrong

  7. #7
    mikeys_mom is offline Sapphire level (2000+ posts)
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    Quote Originally Posted by ArizonaGirl View Post
    UPDATE!!!
    We spoke with the psychologist today and he seemed to think that some of the behaviors DS exhibits are "outside the range of normal," and he mentioned OCD and ADHD as possibilities. He suggested that we make an appointment with a psychiatrist for an evaluation and testing and make an appointment with the school district to have a preschool evaluation through ESS (they evaluate gross and fine motor skills, speech, and social skills). We have another appointment to discuss coping skills in 2 weeks.

    I am a little bummed that we have to go through so much testing and other appointments, but hopeful that maybe we are closer to helping my little man deal better with life.
    We went through the diagnosis process about a year ago with 8yo DS. It took about 8 months until we got the formal diagnosis of Aspergers for DS.
    Like you, at the time, I just wanted answers right away. Now, looking back, I'm so glad we went through the process of all the various Dr's and specialists because I feel confident in the issues that we ruled out and that the diagnosis is appropriate. It has allowed us to move forward and get DS the right therapies and that has made such a positive change in his life.

    It is really hard to watch your child struggle and really not know exactly what to do about it. Hopefully you will start to get some answers soon.
    DS - 10
    DD - 8
    Twin Girls - 6

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