Got an official diagnosis and have some questions

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Hi,
I have only posted on here a couple time and have a few questions. Well I
finally got the diagonosis for my daughter. She has been diagnosed
with Aspergers, ADHD, Oppositional Difiant Disorder, and Anxiety
Disorder. They also mentioned Sensory Processing Concerns. She does
go to an OT and she is helping her with some issues like the sensory
and fine motor delays.

What my main question is has anyone here used
biofeedback therapy? I have read a little about it but am still a
little unsure of trying it. This was recommended my one of the
psycologists that I contacted. It seems a little strange to me. I
love her the way she is and really do not want it to change her for
the worse. If anyone has any experience with this please let me
know. I also want to avoid drugging her too and am willing to try as many other things as possible first.

I am also wondering if she should be told. She is 9 years old. She has been doing pretty good this summer it is the school year where we have all the problems. She has been going to camp for the summer and I have had no issues at all.

Thanks,
Anna

I have personally used biofeedback for migraines. It worked pretty well, unless I woke up in the morning with the migraine.

What dx are they recommending the biofeedback for? The anxiety?

On what did they base the ODD dx? From what you say it doesn't seem she's had a lot of behavior type issues. (Many of which can ultimately found to be rooted in sensory issues).

Sensory issues are common in folks with ASD's. Part and parcel of autism is the inability to handle all the "incoming information".

Once our son was dx'd and we figured out what was causing his issues at school and home, we've been able to modify things, and he's doing really well now. I also am avoiding meds at all costs. Way too many side effects for me to be comfortable unless the benefits would outweigh it.

Well some people make claims for biofeedback for ADHD. Its an expensive process
like 50 visit at $100 each = $5000. There is no science saying it works. But even
more important if you goto a ADHD forum site you will find very few people who have
tried it that found it worth while.

Biofeedback is used to control brainwaves and the mental states related to them. For
example if she has ADHD chance are certain parts of her brain is producing too
much theta waves(daydreaming like state). The biofeedback would try to train
her to produce beta waves(focus). I wonder if focus inducing things might make
Anxiety worst. Usually you want an alpha state(relaxed) state to counter
anxiety.

I suggest trying fish oil to all people. Its something you need to take anyway.

Does she take any drugs ? Is her ADHD primary the inattentive type ADHD-I
or primary the hyper type? Or would you say its the combinational of the two?
(I like to ask people question because so many people never answer them or anybody questions for that matter. So I do not excited about studying their problems
when they want provide details, makes my life easier not worrying about people
so much)

Well the anxiety issues at school where just really making her sick. She would get migranes, stomach problems and also because she was so afraid to ask to go to the bathroom she would end up having accidents.

As far as ODD I would say her refusal to do certain things that she is expected to do. She refuses to talk to certain people. Will just turn her head away when they are talking to her. She also argues if she feels really strongly about something. We went somewhere and before you go in you had to throw away your drinks and stuff. She was screaming at the lady telling her she was stupid and she was making her waste money. She does not seem to act up in school she just seems so scared there.

She does flap her arms when she is excited or bored and needs to be costitly touched. Back scrathed, rubbing feet and stuff always.

Will write more later.

Thanks,

Anna

The problem I say you(people who avoid meds) will run into is yes you can avoid alot
of negative side effects by not using meds. I first used meds at 23 so I certainily
avoided med side effects as a kid. But I had inattentive ADD all quiet not bothering
anybody and I got little work done. Inattentive ADD by itself can cause extreme
social skills problems. You factor in AS which seem to have a biological basis for
impairment in the ability to learn social skills , then you get a kid that will have
major social skills problems. ADHD will lead to reduce school preformance. What I'm
saying is if I had a choice i would have rather had meds as a kid than be the semi-
functioning adult I am now. Sure there are many people who needed ADHD meds
took them and hated them and now they stopped them. But where would they be
if they never used them (likely worst). There is a price that will be paid one way
or another.

These things sound more like typical kid/typical AS then ODD. I'm not a professional by any stretch, but it seems they were pushing it with that dx. I never expect my son to talk to anyone. If he chooses to do so, he does it politely, but we will never force it. Arguing about something you feel strongly about shows *backbone* - something this country seems terrified of. And maybe she shouldn't have screamed, but it is a waste of money if you have to throw away unfinished food and drink, especially if no one told her ahead of time to expect this? Our son needs pre-explanation of anything out of the norm. I could see him getting upset if he had to ditch a still partilly filled drink.

One of the things I do want to say is that she somehow dispite all the issues she is having manages to do really well in school. I have sat in the class and watched her at times and she seems to have no idea what she is doing. But when in comes time for tests she always does really well. I know that the stuff that she is doing in class must be getting in her brain somehow.

A note on the meds. I have taken a lot of different ones myself. The side effect have not been good. I was first diagnosed as being bipolar after an hour consultation and then later with depression and anxiety. I decided it was just not for me. That is why i want to avoid them unless there is no other choice.

Anna

And I'm not a staunch anti-med person, but I'm just pro-careful. I personally have to take 6 pills a day just to stay alive, so I have a close relationship with my pharmacist.

My oldest child is bipolar, it took years and many hospitalizations to get the right dx. On Zoloft, she is a different person. Without it, she is a rapid-cycler and it's like having a tornado in the house. The medication allowed her to settle down, make a life, and get married. The benefits far outweighed the risks.

For our young son however, so far with little to no professional intervention, we've come a long way baby, as the saying goes. And I'll keep putting in whatever last reserves I have before I switch to meds. He has told me he is happy. He does well in school, and has a best friend. Most of his problems now are really *other people's problems*, not his.

As far as your daughter in school, sometimes you just don't realize how much has sunk in. I know that to be true with our son on many fronts.

The problem though is that you are assuming (as do most people who advocate meds) that they would be a positive experience for a child. You have no idea how the medication would have effected you as you were growing up or what difference it would have made. You are only assuming that the benefits would have been positive and things would have been easier for you. There is NO way to know that would have been the case - and there are plenty of people who were forced to take meds as kids and complain about that for very logical reasons. It is easy to scapegoat things either way - if a kid is put on meds then THAT is what made things difficult for them or if kids weren't put on meds than that would have made things better for them. The main difference though is that you are an adult and so the meds have a different effect on adults than they do a child - especially in terms of development. Also - the availability of certain medications themselves (you may not have been put on the exact same med you are on now) or that knowledge about the dosages would have been the same would also be another factor.

I know another parent with an HFA son and the docs tried to dx him as ODD. It seemed to meant to withhold services. An autism dx opens doors for advocacy, IEP's and in California it's covered by the Lanterman Act. (obligatory coverage and services by the state)
However, Asperger's and other disabilities aren't necessarily covered by the state and thus, the schools aren't obliged to provide services.
Hearing this second-hand, she explained that the therapies are totally different with ODD and they are seen as a psychological issue.

What my main question is has anyone here used
biofeedback therapy? [/quote]

Well some people make claims for biofeedback for ADHD. Its an expensive process
like 50 visit at $100 each = $5000. There is no science saying it works. But even
more important if you goto a ADHD forum site you will find very few people who have
tried it that found it worth while.

Biofeedback is used to control brainwaves and the mental states related to them. For
example if she has ADHD chance are certain parts of her brain is producing too
much theta waves(daydreaming like state). The biofeedback would try to train
her to produce beta waves(focus). I wonder if focus inducing things might make
Anxiety worst. Usually you want an alpha state(relaxed) state to counter
anxiety.

I suggest trying fish oil to all people. Its something you need to take anyway.

Does she take any drugs ? Is her ADHD primary the inattentive type ADHD-I
or primary the hyper type? Or would you say its the combinational of the two?
(I like to ask people question because so many people never answer them or anybody questions for that matter. So I do not excited about studying their problems
when they want provide details, makes my life easier not worrying about people
so much)[/quote]

Well we just got the final diagnosis and the the final report will be done sometime around August 16th or so. From what i see is she does not have the hyper type of ADHD. More trouble focusing then anything else. But i am also wondering if the Aspergers is making it look like she has these other things. I really think the anxity comes from that. She just does not understand that if you need help you just need to ask. I also do not think it helps that her teacher last year did nothing but yell all day. So far she is not on any meds. After the final report is done i will be taking it to her primary care doctor and we will go from there. I did a little research on my own and did find a doctor that does regular talk therapy and the biofeedback therapy also. In her practice it kind of all goes together. God only know how i will pay for it all. I have always known she was a little different but with her being my only child i just accepted it. She has a lot of trouble in social situations even with members of our own family. Some of them have expressed hurt feelings because of her behavier. One of the main things it how she can pretty much just ignore them. She has always been fine with me. Maybe a little too clingy by others standerds but I am fine with it. She also has an obsesion with animals but i also accept that and am glad that she already knows what she wants to do with her life. I am 28 years old and still have no idea.

Where do I get fish oil? Does it come in a liquid form? Do I need to talk to her doc about this? She will not take pills of any kind. I really am grateful for any info you can offer.

Thanks,
Anna

Thanks,
I am dreading her going back to school. I wish i just had the option of teaching her at home myself. I am a single parent who must work to support us. The child pycologist told me she can pick one which one to use which would be the Aspergers so that she can get more help in school or even diagnose all of them. I would rather her just put the Aspergers and anxiety. So will she not get the services she needs in school. I have a feeling it will be very hard. At the end of last year they pretty much said well she does have these problems and it might be Aspergers but we just do not have the time to find out right now so you will have to wait. So of course I decided to just go ahead and pay out of pocket for my own assesment. It took from May and is still in the process of being totally done. If it is any help we are in Phila, PA. Do you think they will give her the services she needs or fight me on it. Will they insist on doing the testing again? The total testing took about 5 sessions of 2 to 3 hours at a time so i do believe it was very complete. Will they go by that?

Thanks,
Anna

Okay, I'd never heard of Biofeedback but now that I look at its description and how it works it sounds like it could definitely work for a time.

But I'm not so sure for extended periods of time if it could work since, with the video game they described and controling it with the level of your brain waves, that's providing immediate external reward. But what's going to happen after awhile when that person no longer has that video game reward in front of them? For people who are strong-willed and can continue their focus, it would probably work fine. But for people and kids who don't have that control naturally, it would probably wear off without continued sessions.

My recommendation is to try meditation. It teaches methods of internal reward rather than external, and you can gain a similar sense of control over your behavior. Not to mention it's a hell of a lot cheaper.