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Diabetes & Asperger's Syndrome

Discussion in 'Parents of Children with Type 1' started by Anja821, Mar 19, 2008.

  1. Anja821

    Anja821 Approved members

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    Hi all,
    I'm new here. I should have joined years ago! My DS, Evan, is 5 and was diagnosed at age 2 1/2. Last year he was also diagnosed with Asperger's Syndrome (which is on the autism spectrum).

    Prior to the AS dx, we attributed his behavioral issues to highs and lows, particularly lows.

    Does anyone else have this experience? There are many days I'm still not convinced the AS dx is accurate - even after 3 independent evaluations.

    What I'm referring to are crazy antics, aggressiveness, hyperactivity, tantrums which are beyond the "normal" scope for a 5 year old.

    I'd love to hear from you!
     
  2. Shirley and Jamie V.

    Shirley and Jamie V. Approved members

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    Our daughter is 9 and was diagnosed at 7. We have really good control generally and have been pumping for almost a year now. For me, the HARDEST part of d has ALWAYS been behavioral. After a terrible high BG tantrum, we can joke about Maggie bright and dark. I can't believe how many times I've said "If you're not over 250, you're grounded!"

    I had an adult D friend who said that coming off a night of highs and corrections leave you feeling really hung over. When her behavior is erratic, irrational or just plain miserable, I try to imagine what she must feel like.

    Last weekend all of the cousins went to the circus followed by a birthday party. Although we counted every last carb and thought we kept her numbers close to range, she woke up on Monday UNBEARABLE!!!! She started her day screaming from her bed that she was angry with her father and me because she didn't get her cousins at her birthday etc..... Our child is not spoiled and does not usually behave this way. It is for us, however, an all too common over-carb hangover.

    As for Ausburger's, I don't know what the particular guidelines are. (I'm an art historian by trade), but I am surprised by the number of children discussed on his site who are diagnosed with behavioral-based syndromes. It seems many can be the result of off-target BG's.

    I hope you find the answers you are looking for. Until then, you have found a wonderful resource full of kind and generous people here.
     
  3. DustinsDad

    DustinsDad Approved members

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    The first thing to realize is that the diagnosis is clinical and not medical. I only have the one child, so had no reference as to "normal". It did not become apparent to me until studying behaviors amongst his peers.

    One of the parts I have trouble with is the impulsiveness that comes with the hyperactivity. Each child is different, so my experiences won't be the same as yours, but it is really difficult to separate what is little child behavior from what is "extra". My son has trouble with frustration, and it escalates very quickly into inappropriate behavior (he's also in the Asperger's side of the spectrum).

    For us, the most important thing in striving for normal behavior is structure and routine. It helps a lot if we tell him well in advance of any pending changes to his routine. Things are much better now at 10 years old than at 5 as far as adaptability and peer relationships, but it is still work in progress.

    PM me if you would like to compare notes or just to chat. We've been through early intervention and special services and also school services.
     
  4. allisa

    allisa Approved members

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    Welcome !

    Where did your son get his evaluation done ? By a Developmental Peditrician ? Neuroligst ? You sound as though you are not fully secure in his dx....have you had more opinions ?

    My daughter ( non Diabetic) has PDD NOS as well as Down syndrome, so we've "been around the block" when it comes to evals and testing.

    IT is all very overwhelming some days !! If the AS diagnosis is correct....don't sepair completely yet !! There is a lot that can be done with interventions, etc....I belong to a GREAT site for parents with kids who have Autism...believe it or not....there is even MORE traffic and messages on that board than this ( and this one moves pretty fast !!)

    http://www.autism-pdd.net/forum/default.asp

    You will find a ton of moms ( and dads) with kids with the same dx, tons of advice and even some adults with autism who give wonderful insight !!

    I think much like a DIabetes dx.....you will know your child best and what will work and not work....so research, get involved and be sure you are confident in your doctors.

    PM if you like ~
     
  5. Anja821

    Anja821 Approved members

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    He was dx'd by a behavioral psychiatrist, a developmental pediatrician, and the psychologist from Milestones, the service we use for TSS and BSC services.

    My problem is drawing the line between behavior associated with diabetes (highs/lows) and developmental issues. The more I read through this forum, the more I will understand how diabetes affects behaviors, and learn how other children handle the stress of this disease.
     
  6. Anja821

    Anja821 Approved members

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    I hate to say this but I'm really glad to have found someone who is also going through diabetes issues and ASD issues simultaneously! I am on the Oasis forum hosted by Barb Kirby and have learned a lot from them. DS currently receives TSS and BSC services in addition to twice monthly services through the IU.

    I will PM you to pick your brain some more. Thank you so much!!
     
  7. DoxiePa

    DoxiePa New Member

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    I note that the last post on this thread was over two years ago, but I assume you are still dealing with this combination Aspergers-Type 1 treatment. Often our challenges come at meal times, particularly once the insulin is already on board and we know he has to have the corresponding carbs. Have you run into this?
     
  8. m7vjewell

    m7vjewell New Member

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    3 y/o with T1D and behavior concerns

    My daughter was diagnosed a year ago (2 1/2 years old) and since then her behavior has been very difficult. She has multiple tantrums daily and can get upset very easily. Bedtime is the worst. Prior to her diagnosis, she was (in my opinion) the most well-behaved child I have ever met! I am not sure how to handle the tantrums and bedtime routine. And am curious if this is normal? I am also wondering if she has Asperberger's? I know that it is more common in males, but there are times when I really question this. I am an occupational therapist and have some familiarity with the ASD, but am never diagnose medical diagnoses.

    Any ideas on how to manage the behavior problems? Especially bedtime?

    Thanks from one sleep deprived mom,



    (She is currently on a pump).
     
  9. Mwills27

    Mwills27 Approved members

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    Autism and Diabetes

    My son who is 8 was diagnosed with type one on July 26 2011. Oh the struggles... He was also diagnosed with Autism spectrum disorder when he was three. Because of the years in between I highly doubt his Autism diagnosis was in any way based on blood sugars. He was not diabetic when diagnosed with Autism.

    In doing my research in the past month since his diagnosis, I find there are a great many papers out there about the increased rate of Autism spectrum disorders among type 1 diabetic children.

    If anyone would like to have a side conversation with me about this, feel free to contact me.

    Also of interest, my son has been sick since birth, has an unknown immune disorder, multiple recurrent pneumonias and has only one kidney. (just in case there's anyone else out there like him)

    Thanks,

    Melanie
     
  10. MrsBadshoe

    MrsBadshoe Super Moderator

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    I have two type 1 diabetics and on asperger child. The two at times can exhibit the same behaviors....when my type 1's are on a super high there behavior and reactions can be very similar to my asperger son. I can't even imagine having the two in the same child and trying to sort through the behavior.

    I definitely agree that notice in advance does make the change that much easier to get through. I would keep thing as much to a routine and simple as possible...does your son like the same foods. If so I think variety would make your life more difficult in trying to predict insulin needs. The more stable his numbers are the less the behavior will be about diabetes and more about aspergers..
     
  11. Aspi&Diabetic

    Aspi&Diabetic New Member

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    why?

    Hi There
    I live in London I am from Poland My son was diagnosed when he was about 3 years old with type 1 Now he is diagnosed as ASPI Asperger Syndrom He is 5 Why? Why doctors can't tell me why?
     
  12. Aspi&Diabetic

    Aspi&Diabetic New Member

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    Because of the years in between I highly doubt his Autism diagnosis was in any way based on blood sugars.
    What do U mean? Do U think Autism or Asperger Syndrom can be mislead with hypoglicemia or hiperglicemia? Maybe they had MODY 2 not type 1 I red mutation of gens cause Mody 2 and cause AS so maybe it is the same gen? Personally I feel that doctors do not see some facts and can`t think hollistic Pls help if U have any clues
    *Recently I am interested in Polish doctor Piotr Trzonkowski (clinical immunology)from Gdansk and his immune resarches which can cure diabetes 1 in children He begins trials
     
  13. Aspi&Diabetic

    Aspi&Diabetic New Member

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    Melanie

    Hi There
    Pls let me know if U find something new or interesting It is strange for me that doctors can not tell me what is the cause of Type 1 and Aspi
    Best Regards
     
  14. ViragoTwins

    ViragoTwins Approved members

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    Hi All. One of my identical twin boys was dx with Type 1 in April 2012, now in June & July of this year, both boys were dx with Asperger's. It seemed to really start to show to us when our TD1 son had major issues dealing with the requirements of the disease, but we'd had behavioural issues with the boys all their lives. Now looking back at the behaviour, it really fits the Asperger's dx. We tried numerous methods of child rearing techniques with none of them really helping-now we have a reason why. We are just at the beginning of our Asperger's journey, but I'm hoping that with this new knowledge we can develop the tools to help them cope in life.

    Jan
     
  15. Christopher

    Christopher Approved members

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    I have not heard of this doctor before. Please post information on how he is curing Type 1 in children. Thanks.
     
  16. Mwills27

    Mwills27 Approved members

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    Hi there,

    I know it's been over a year since you've last posted, but there is some therory of Autism and obviously type 1 diabetes being Autoimmune related. To date, I've never had a doctor tell me "why" my son has so many co-morbid conditions. I don't expect ever to really know why, however I still research it now and again.

    Handling T1 with Autism isn't for wimps. It's a daily struggle. If anyone going through this ever needs to chat, please send me a message. I'll be on the forum more regularly now.
     
  17. kimmcannally

    kimmcannally Approved members

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    J has been on the spectrum since birth. He was born the way he is. It took me years of bugging doctors to get him diagnosed with Aspergers. They did list him as PDD-NOS when he was younger, but no one told me that meant he was on the spectrum. :( He was finally officially dx with Aspergers a year or so before he was dx with Type 1.
    Puberty has done great things for his ASD, and not such great things for his D. I've never tried to tease out what is a blood sugar behavior and what is an ASD behavior. For him a high just makes his ASD behavior worse. It's been difficult dealing with him since he was a baby and having D has changed things. Not made it more difficult, but the ASD makes dealing with the D more difficult.
    He was 2 weeks shy of his 13th birthday when diagnosed with D.
     

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