Discussions By Condition: I cannot get a diagnosis.

help with son

Posted In: I cannot get a diagnosis. 4 Replies
  • Posted By: bananahoagie
  • December 6, 2010
  • 02:27 PM

I'M not sure where to put this so i guess here is better then any. My son is 5 years old. When i was pregnant with him i had several ultrasounds because his legs kept coming up shorter then they should have been. He was born at 39 weeks he weighted 6lbs 4oz and 19.50 inches long. He rolled over early, said sounds dada,baba, mama that type of things early. He sat unsupported at 5 months crawled at 7 walked at 10. None of his issues has ever been the things he could do or how he moved.

At 5 weeks of age he was diagnosed with congenital heart defects. Arterial Septial defect, Coartation of the Aorta, thickness of of aortic vaulve and mitrial vaulve. He gets check up every year and on his 4 year check up he was diagnosed with Left Ventricular Non-Compaction (LVNC).

By age one he started losing words like mama. He pointed to much of what he wanted and wouldnt talk much. We finally got the doctors at his office to let us see a special doctor im sorry im not sure exactly what type of doctor he was, except he saw children with things like ADHD. That doctor said he had low muscle tone, showed signs Autisim, hes very short for his age and said perhaps Williams Syndrome. We got a referral for childerns hospital.

After 9 months of waiting for that important day we were told she doesnt see any signs of Autisim. Said hes a little delayed in mental abilities, instead of being 3 year 11 months old mentally hes more of 2 1/2 mentally. He was tested for williams syndrome and taht came back negeative and then they tested for every other genetic disorder and he came back negative.

Starting at age 3 he begain taking Speech therapy. They said he has a severe language problem with Receptive and Expressive Language. He speaks sentences now with no problem, but were still not sure how much he actaully understand that we tell him. He can not pay attention he wont sit still when we ask him to. He wont read one book,play one game, watch one show for longer then a minute or two. He bounces off the walls it seems.

He has issues with behavior. He doesnt listen to a thing his dad or i say. He screams and kicks and crys worse then his 2 year old sister. He is in kindergarten and the note we received from his teacher is as follows..

."He sits quietly at the carpet, now whether he is paying attention is not always clear.He is far behind the class in letter and sound recognition and other first quarter skills like positions, counting to 25, saying (not singing) the abc's. He also calls a rectangle a "door". In the second quarter (which begins next week) I anticipate that X will struggle with patterns, (aabc, abbc, abcc), sequencing 4 pictures of a story, his birthday, right and left, days of the week, and sorting by shape (he didn't know what to do when I told him to sort by color either). One of his major difficulties is with following multi step directions. He sits right next to me and as long as I tell him one instruction at a time on a paper, he is ok. He cannot work independently after hearing the instructions and seeing examples modeled at the carpet to the whole class. Without verbal prompts,X would just sit quietly at his seat and do nothing or color randomly on the paper. "

That was in a email i received from his teacher.

This is very frustrating and were trying to get him help. Any help or advice or point in the right direction were so greatful for.

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4 Replies:

  • I'M not sure where to put this so i guess here is better then any. My son is 5 years old. When i was pregnant with him i had several ultrasounds because his legs kept coming up shorter then they should have been. He was born at 39 weeks he weighted 6lbs 4oz and 19.50 inches long. He rolled over early, said sounds dada,baba, mama that type of things early. He sat unsupported at 5 months crawled at 7 walked at 10. None of his issues has ever been the things he could do or how he moved. At 5 weeks of age he was diagnosed with congenital heart defects. Arterial Septial defect, Coartation of the Aorta, thickness of of aortic vaulve and mitrial vaulve. He gets check up every year and on his 4 year check up he was diagnosed with Left Ventricular Non-Compaction (LVNC). By age one he started losing words like mama. He pointed to much of what he wanted and wouldnt talk much. We finally got the doctors at his office to let us see a special doctor im sorry im not sure exactly what type of doctor he was, except he saw children with things like ADHD. That doctor said he had low muscle tone, showed signs Autisim, hes very short for his age and said perhaps Williams Syndrome. We got a referral for childerns hospital. After 9 months of waiting for that important day we were told she doesnt see any signs of Autisim. Said hes a little delayed in mental abilities, instead of being 3 year 11 months old mentally hes more of 2 1/2 mentally. He was tested for williams syndrome and taht came back negeative and then they tested for every other genetic disorder and he came back negative. Starting at age 3 he begain taking Speech therapy. They said he has a severe language problem with Receptive and Expressive Language. He speaks sentences now with no problem, but were still not sure how much he actaully understand that we tell him. He can not pay attention he wont sit still when we ask him to. He wont read one book,play one game, watch one show for longer then a minute or two. He bounces off the walls it seems. He has issues with behavior. He doesnt listen to a thing his dad or i say. He screams and kicks and crys worse then his 2 year old sister. He is in kindergarten and the note we received from his teacher is as follows.. ."He sits quietly at the carpet, now whether he is paying attention is not always clear.He is far behind the class in letter and sound recognition and other first quarter skills like positions, counting to 25, saying (not singing) the abc's. He also calls a rectangle a "door". In the second quarter (which begins next week) I anticipate that X will struggle with patterns, (aabc, abbc, abcc), sequencing 4 pictures of a story, his birthday, right and left, days of the week, and sorting by shape (he didn't know what to do when I told him to sort by color either). One of his major difficulties is with following multi step directions. He sits right next to me and as long as I tell him one instruction at a time on a paper, he is ok. He cannot work independently after hearing the instructions and seeing examples modeled at the carpet to the whole class. Without verbal prompts,X would just sit quietly at his seat and do nothing or color randomly on the paper. " That was in a email i received from his teacher. This is very frustrating and were trying to get him help. Any help or advice or point in the right direction were so greatful for.It sounds like he has a learning disability, maybe along with ADHD. A good child psychiatrist or child neurologist should be helpful, and you may have to travel to find a good one. Medications can help with behavior/ADHD, which he may or may not need right now, but most important really is that the school recognizes whatever problem he might have. Most public schools are very tuned in to meeting the needs of children with learning difficulty and providing appropriate support and education.
    Anonymous 42789 Replies
    • December 8, 2010
    • 00:27 AM
    • 0
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  • Your experiences do sound very frustrating. I agree with the previous poster that a seeing a pediatric neurologist or a pediatric psychologist (or even a developmental pediatrician) is exactly the right thing for you to do now. Keep making appointments with different doctors until you get a diagnosis which makes sense to you. Behavioral conditions can be extremely tricky for a doctor to sort out in the very short time they have to make their analysis, so sometimes it can take a several attempts with different doctors before you get a correct opinion. For what it's worth, I could't help but notice that some of the things you mentioned do occur with autism or other types of PDD ("pervasive development disorder"):-Learning language initially but then losing it later-Poor muscle tone-Not giving you cues to let you know whether he's heard you-Inability to internalize multi-step instructions-Delayed development I have seen these traits in children I know with PDD or autism (but keep in mind I am no expert). PDD and autism typically include repetitive behaviors in addition. Does your son do any of the following? Rocking, head rolling, hand flapping, repetitive self-injurying motions, arranging objects, getting upset at changes in the house, getting upset at changes to his routine, interacting with a toy in the same unusual way every time, walking the same path over and over, being overly obsessed with a certain object or video? Be as assertive as you can in pushing for a helpful diagnosis and for the guidance and support which should follow it. It sounds like you've had a rough road so far, and you and your son deserve better.
    Walker12 30 Replies
    • December 15, 2010
    • 04:49 PM
    • 0
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  • It is important to get Autism ruled out by someone who specialises in the disorder. I strongly suggest you do this for your son. It can be hard to pick up in young ones but can be more pronounced once they get to school and all the social interaction issues start then occurring too. I have Aspergers and wasnt diagnosed till my late 30s. Loss of speech can occur in Autism or Aspergers, so can not being able to concentrate on things others want you to concentrate on. Trouble following steps correctly and organisation issues are all part of Autism"They said he has a severe language problem with Receptive and Expressive Language" Also could be Aspergers"He has issues with behavior. He doesnt listen to a thing his dad or i say. He screams and kicks and crys worse then his 2 year old sister." Part of Autism spectrum It's thou hard to know right now due to his age so make sure you get him to an expert in it.
    taniaaust1 2267 Replies
    • December 16, 2010
    • 09:39 AM
    • 0
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  • Just wanted to add that my own child, was a special needs child right throu school, they diagnosed her with learning difficulties etc.. had child learning specialists assess her etc etc. It shocks me that they all missed that she was clearly had Asperger's so she went right throu school being thought of just as learning disabled and being seen as a difficult child due to her behaviours. (and her case is extremely clear to see its Aspergers).
    taniaaust1 2267 Replies
    • December 16, 2010
    • 09:43 AM
    • 0
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