A few questions for you all...

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Registered: 03-26-2003
A few questions for you all...
6
Mon, 10-10-2005 - 1:04am

Hi, I recognize some of you from other boards. And need some advice . Here is my dilemma.


Dh and I have a son who is now 10. He currently has the DX of ADHD/ODD and bipolar disorder and has dysgraphia (a handwriting disorder). Yet there are still some unexplained behaviors. He doesn't know how to tie his shoes, he can't count money or tell time, he is a concrete thinker, he gets very upset if something doesn't go the way he thinks it should, even though he never expressed his thoughts on how it should go in the first place

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Registered: 06-25-2003
Mon, 10-10-2005 - 9:05am

Hey Kathy!

LTNT. I do remember you hung out on this board for a little while. I tought you were going to have Joiner evaluated for AS? Did that go ahead?

I do see some red flags there, but it could be AS or NVLD (non-verbal language disorder) However some of the social issues you mention; -showing/sharing when no-one is interested and not 'getting' that the are not interested, is an AS red flag. Also early and precocious language is common in many kids with AS. So is early and precocious reading

Does Joiner have any obsessive interests?

Also we have a few moms on this board who have kids with co-morbid BP and AS/PDD DXes so it is not unheard of. In my experience a LOT of AS kids are mis-DXed with ADHD/OCD. Who made the call on this DX for Joiner? A neurologist, (neuro)psychologist or Developmental Ped? Is he on ADHD meds? How is that working out?

You mentioned he has sensory isues (and I remember you from the SID board). How is his muscle tone? It is common for sensory kids to have low tone, That could be contributing to is fine motor issues. It is possible that the bathroom accidents are a combined sensory (doesn't feel the urge to go until he really *needs to go), and low tone (can't hold it). a full OT or PT evaluation should ferret out any low tone issues.

In some school districts, an educational label of Autism will entitle you to extra services, However, most health insurances explictly exclude evaluations and other help for kids with an ASD/PDD. You usually have to go through the schools.

HTH

-Paula

-Paula

visit my blog at www.onesickmother.com
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Registered: 09-17-2003
Mon, 10-10-2005 - 9:13am

Hi Kathy,

My name is Beverly and I have a 14 y/o ds who has been dx'd with Bi-polar disorder, Conduct disorder, Tourette's Syndrome, Severe Anxiety disorder and developing psychotic disorder. Your son sounds exactly the same as mine did at that age. When he was 10 we went through all of the testing for ASD's because of alot of the same things you are describing. He scored borderline on just about everything. The way the doctors have explained it to me is that he has spent so much of his formative years coping with his emotions and rages that he has missed the "normal" learning that children do. Having bi-polar disorder is a sort of pervasive development disorder - it pervasively affects every area of their development except for physical. These kids are emotionally and socially stunted.

Rodney has been in cognitive behavioral therapy since he was six and he still needs an aide full time because he just doesn't process what is going on around him very well. He usually misses social cues and he can take what other people are saying and twist it around to suit his version of reality at that moment. If he is feeling angry he takes everything that happens around him as a personal insult. If he is feeling depressed he uses what other people say to reinforce his negative image of himself. He finally learned to tie his shoes a couple of years ago (personally I don't get what the big deal about shoe tying is - if they can't do it there is always velcro), he still has problems reading a clock - so he has a digital watch. He still has bedwetting problems, he has been on DDAVP for the last couple of years and it works really well, but we can't seem to stop it without the problems showing up again.

Even thought Rodney doesn't have an official ASD diagnoses, alot of the same things work with him as with ASD kids. I don't know what the advantages of having the Aspergers diagnoses would be as far as health insurance would be but I think that having you recognize these things in him will help if you can find a therapist who can help you try and work through them with Joiner. I firmly believe that with medications and therapy, you treat the behaviors that you are seeing - not the diagnosis.

Beverly

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Registered: 03-26-2003
Mon, 10-10-2005 - 9:35am

Hi Kathy,

Ditto what Beverly said.

He sounds alot like my friends BP son who is also diagnosed with tourettes, OCD, ADHD, severe LD's and PDD-NOS. The PDD part was because there were just those quirks that couldn't be accounted for from the other diagnosis. Though he does not seem autism spectrum in many ways there is that part that is hard to account for where he is pervasively delayed.

I am not sure about insurance. My kids really don't get anything more out of insurance from the AS diagnosis than they would with any other. THey get therapy through behavioral health (soon to switch to a social skills group) and they have seen neurologists and psychologists. They don't get OT, speech or any of that through our insurance because our insurance doesn't cover those unless there is a severe phsycial delay. The insurance considers thier problems educational so covered by schools.

Where the diagnosis does help is with accessing services through our states department of developmental disabilities or "Regional Centers". To access that you have to have autism, CP, epilepsy or MR. They provide respite, educational consulting, and such services.

Also the diagnosis does help for us in schools as they can access autism specialists for consultation and pull outs as well as the HFA program in middle and high school. That helps Cait but most likely isn't an appropriate program for Mike anyway. He needs a more intensive program.

I think these kids like my friends son and yours are a new category all in thier own where they end up an alphabet soup of diagnosis because no one knows where exactly to place them. That is very frustrating for my friend and I bet it is for you as well. Best thing is a complete evaluation (perhaps neuropsych) that will completely show all the childs strengths and needs and how to help them progress/learn.

Renee

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Avatar for kathy_in_ga
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Registered: 03-26-2003
Mon, 10-10-2005 - 9:36am

Hi Paula, yes I remember seeing you. We had Joiner tested this summer, Originally he had a DX of ADHD/Bipolar. But the ODD was added.

Avatar for kathy_in_ga
iVillage Member
Registered: 03-26-2003
Mon, 10-10-2005 - 9:51am

THANK YOU! WOW! that totally sounds like Joiner. He does the same things, turning things around, missing the real meaning of a social action all of it.


When he was

Avatar for kathy_in_ga
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Registered: 03-26-2003
Mon, 10-10-2005 - 10:06am

Hi Rene, good to see you. I posted a minute ago about my feeling of the multiple DX's , and not really fitting in a certain category. I feel, there will be some kind of finding, a gene or new disorder that may explain Joiner's and others problems. Once that is done then it would be easier to treat the symptoms correctly ( have had some bad reactions to medication, esp adhd meds).Right now Joiner is on 3 medications. Each for something different (depakote, abilify and newly added focalin XR). Each take away some of the behaviors, and I am glad we have that much. We work hard on the other behaviors. But for some reason Joiner doesn't believe me on a few social things. Maybe it's because I am the mother. He told me one day that is teacher was yelling at him, come to find out she was being stern, trying to get him to do his work. I have been looking for some kind of social skills group or therapist. He is supposed to get that in his specialized school, and I have asked about it. They say they show him as each occurrence happens what is correct (yeah right, rolling eyes).