So confused about different Dx
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| Tue, 10-25-2005 - 5:10pm |
My DS (7) has been evaluated by a private Psychiatrist, Pediatric Neurologist, school appointed psychiatrist, and school phychologist. We have gotten several different diagnoses, including Asperger's, ADHD, ODD, and possible Bipolar Disorder.
How do I know what the "true" Dx is? and who do I believe? Do I just keep going from specialist to specialist in the hopes that eventually a few of them will agree on something? Who is the "right" person to take my DS to?
I know it's not necessarily the name that's important as much as the symptoms/ behaviors and how to best treat/ handle them. I am not convinced that we have a clear picture yet of DS's full range of difficulties, or his potential for that matter. School is a nightmare (home's not much better) and our IEP eligibility meeting is next week. I don't know how to progress without an accurate picture of what's going on.
At a loss...
Melissa

I am so sorry. It can be hard. Some kids are really hard to place as far as diagnostics go. Some are alphabet soup kids.
The biggest thing to do is to get a full, thorough eval to learn what his strengths and needs are and how to teach him. One diagnosis will not tell you all who your son is. Each child even within one diagnosis can be so different. BUT often we do need diagnostics to help determine services and to even understand what is going on and find others like ourselves.
However, on those diagnosis, I will say that AS can cause symptoms that mimic all those disorders. A child with AS can hit the diagnostic criteria for all of those due to the AS. Bipolar as well but since you only say possible bipolar and has a diagnosis of AS, I am thinking he likely leans a bit more toward the AS part?
Ok, I am not a doctor. Just gonna give you my experiences as a parent and friend who has met lots of kids with those different diagnosis. First, I am going to say I would bet he has significant ADHD type behavior, but that would not fit him completely or be his full diagnosis. It may help in how to teach him but ADHD doesn't discribe him totally.
ODD, well I gotta tell you, I don't like that DX. I think it is a load of malarky but I am not a doc. I think there is always some other issue or challenge at play with a child with ODD and to use that label just either puts blame on the child or parent. I can go into 101 reasons why AS kids can be oppositional due to thier AS and really what helps is teaching them understanding how thier brain works. For instance, they tend to get stuck and don't transition well. Then they get overstimulated at noise and particularly lots of verbal direction. So what happens is that you start giving verbal demands to a child who can't easily transition, they start to resist because thier brains need a chance to get around that new idea, then we hit them with more verbals and BAM they are oppositional. There is more than that but alot of it comes down to pure neurology not willfullness.
Bipolar, while some kids with AS can also be truly bipolar most are not, HOWEVER, many many many have mood swings and mood instability. All that stress all day long trying to cope and many are explosive. It is all neurological.
This is a very long rambling, so sorry. Sometimes it is hard to make sense of. I guess if I were you I would research each diagnosis and see which one fits your ds best in your oppinion and perhaps go to a specialist with that and see.
Each doc has thier own oppinions and sometimes until a kid is a slam dunk in one diagnosis or another they may be an alphabet soup.
Oh, definitely read "raising blaze". This womans situation is very similar and it is a great book. Blaze has since been diagnosed autism spectrum but he didn't fit neatly into one or another either. My youngest dave doesn't, but he is doing well now so it isn't a big issue anymore. It may be in the future again.
Renee (who thinks she was no help what so ever)
Melissa, I completely agree with Renee. I know it's frustrating but it is more about understanding there is an issue and dealing with that. For me it was recognizing that his behavior was not on purpose. Just that simple fact (that I frequently have to remind myslef of) helped us so much. We also had a range of Dx. i thought ADD/ODD, brought his to therapist who said anxiety, then psychiatrist said Anxiety/OCD. The after the full evaluation by the pysycholgist Aspergers/depression. She beleived his other issues his ODD like behavior, OCD, anxiety were more symptoms of the AS rather than seperate issues. I still question, well could they just not figure it out, so it all fit nice and neat under AS??? But the reality is it's the issues We have to learn to cope with, regardless of what the diagnosis is. I understand your frustrated I really do but like Renee said read up all you can and see where you feel he fits. The more I read on AS the more I see this is where he fits, for the most part Im shocked it took us so long to figure it out.
Amanda
Thank you, Renee and Amanda, for your responses. You were not rambling, and you did help - even just to know that my ds isn't the only kid who doesn't fit nicely into a Dx.
I guess one of my biggest confusions is about whether or not to try medication, and if so, which one? If he's ADHD, it's a stimulant. If he's Bipolar, it's an anti-psychotic or a mood-stabilizer. If he's anxious, it's an anti-depressant. DS has been described as all of the above, so which one do we start with? Or is it all just different manifestations of AS and we shouldn't give him anything at all, but rather deal with the underlying issues? And how do you do that???
My DH is totally against any medication, at least for now, so I'll need some pretty solid information in order to convince him - IF that's what's best for DS. Right now, I just don't know which way is up. The school psychologist and school appointed psychiatrist both point toward ADHD, so I know they're going to push in that direction.
Thanks again for your kind words.
Melissa
I understand not knowing and the going the medication route makes things pretty hard to figure out. I had similiar thoughts when I was considering medication, and my dh was also totally against it. To be honest mediations scare me, and this is just my opinion, but particularily when you have so mixed issues, I worry about having adverse reactions. I just had to do research on the ritalin controversy and I was shocked by some of the info I found. I don't want to start a battle because I know meds have helped alot of people, and I also know I was at a point that I was at a point I thought it would be the only thing that would help. However reading some of the info on the side affects and also how much kids are misdiagnosed it's scary!
Amanda
Well, if it is AS all those issues can fall under the AS umbrella. If that is the fact then those medications may or may not help depending on his personal makeup.
We found with our son after many many med trails, that no meds worked for him. Actually no meds worked for either son but we didn't try as long with the second son. Instead we use supplements, an organic-low/no sugar diet, and behavioral and educational strategies like checklists, breaking things down into small parts, and reinforcer program as well as lots of incidental teaching with all the kids (I have 2 with AS, one with borderline PDD-NOS and ADHD,and one NT). Mostly it takes alot of understanding who they are as a person. What works for them and what they need.
Meds did work for my daughter, however, she is older and really wanted to try going without meds. Plus she had started cheeking them and other methods not to take them. I thought I could use diet, supplements and behavior strategies for her too. She is having a rough time now in school but honest it is not that different than when she was on the meds.
Both my AS kids could have a variety of diagnosis, but for them it all fits under thier expression of their AS. Kind of what came first. Did the AS cause all this or do all these make up AS? For the oldest 2 the AS causes all that I have checked with numerous professionals. Now that they are older it is easier to see they are strike zone AS kids, but Cait also has had past diagnosis of ADHD, SID, chronic tics (does fit criteria for tourettes), partial seizures, movement disorder, and even conduct disorder and ODD have been mentioned. For Mike it is OCD, ADHD, SID, Tics disorder, mood lability, mood disorder, and would even meet the criteria for ODD.
It is my borderline kid, Dave, that we don't know where he fits yet. I think it will be a couple years before we do.
Renee
Hi,
I have a 7 year old who scored "In the range of Autism Spectrum" on an ADOS by one point.