Made up my mind

[StrugglingAgain]

I'm so tired of flailing around, I finally bit the bullet. I called the Texas Children's Hospital and I'm getting a referral to them to have ds evaluated. I've been playing doctor...the psychiatrist will give me any meds I want for him, but how in the h### do I know what he needs.? I'm no doctor! None of the stims work much, but I'm afraid to GUESS and put him on anything else. I'll let the team of experts tell me. I probably should have done this a year ago, but it's not too late. Give me strength!!

[milesofsmiles]

I don't have much left (strength that is) but I am always willing to share what I have.

Miles

[finnmom]

S/A You´re doing the right thing there. Knowlidge is the biggest factor in here, you need to kow what you´re against before you can start helping your ds. Lot´s of strength to you

[camismom]

I wish you luck, and hopefully real soon peace!

[Linda]

I was going to suggest this to you but I didn't want to offend you. We are here for you.

[Amsmom]

great job s/a!!!!!!
that dr who ordered meds that you suggested rather than properly dx'ing ds should be reported!!!
much good luck to you. you are on the way to some real help, i just know it.

[StrugglingAgain]

It will be at Texas Children's Hospital in Houston. They have a support team who will do multidisciplinary evaluations. We live in the Clear Lake area of Houston, so it will still be a drive, but one I'm willing to make. We're only at the referral stage. The hospital is sending a fax for our child psychiatrist to fill out for the referral. In this area, though, the psychiatrists only do meds and absolutely NO therapy. So in addition to him we've seen a child psychologist who helped NONE in 18 months and now we're seeing a family therapist. At least this family therapist is giving us things to try. I imagine it'll take forever to get an appointment at the hospital, but I can only do the best I can do.

Thanks for all your support!!

[sportsmom]

GOOD LUCK~~~~I am hoping for the best for you and your ds.

[AnneM]

Keep us posted S/A - this sounds like a great idea ... OH I SO MUCH HOPE THAT THIS GIVES YOU THE ANSWERS YOU SO THOROUGHLY DESERVE so that you can MOVE FORWARD ... Whatever is happening with your ds it will be a GIANT step forward when you KNOW!!

[Jorgy]

I just went through the same thing and had Jake evaluated by the experts. I also was sick and tired of regulating his meds by myself and having a psych that just wrote out scripts. I am very happy with the results so far. Jake has been diagnosed with auditory and visual processing disorders and is finally getting the help he needs.
Good luck to you! I hope it all works out.
Sue

[StrugglingAgain]

Sue, is that what the experts came up with? Is that in addition to ADHD? I have NO doubt my son is ADHD and ODD (very, very classic), but I think there's more and I want it figured out. I hate it that I'm taking him there in desperation, but the meds he takes just plain don't do very well and I've about run out of meds for ADHD/ODD. For instance, I have no idea how 15mg of regular Ritalin is compared to 40mg Ritalin LA. He's on the regular right now, and it seems to work about as well as the LA (though neither do great) ever did. This is soooo nerve wracking......I don't WANT to be his doctor!

[Jorgy]

I soooo hear you! I decided what Jake should be on and I adjusted his dose and the dr just wrote up the scripts. His only comment was "The concerta isn't working as well as we hoped." Well, dah! I'd been saying that for 2 years!
Then I heard about auditory processing disorder and all the symptoms are the same as ADHD. The only way to test for this is through an audiologist. So, I took him on my own for testing. And sure enough! I am now told that it is very common for an ADHD kid to have this on top of the ADHD. It is something that can't be corrected but it is something we can work around. When school starts he will be using headphones that are hooked up to a mic on the teacher. He will get instructions directly and won't have to filter out everything else. Also having instructions writen out helps except he has the visual processing disorder.
I took him to a speech therapist who is teaching us statagies for talking to Jake so he understands and can follow directions. Next she is going to teach him statagies to help himself. Much of his behavior has been caused by frustration, frustration that he can't hear the directions and can't remember them. Frustration that we get mad at him because of the above. He thinks the stuff we learned is neat and is actually doing better with listening.
I then took him to a child psychiatrist who recommended seeing a child neural psychiatrist because they could deal with the learning problems along with the ADHD. Oh, I forgot, OT is now working with him on fine motor skills. They did a special assessment and his skills are at a first grade level, he was just faking. Can you imagine sitting in 3rd grade and trying to pay attention and to focus and to coordinate trying to write and spell correctly? It must be exhausting!!! All the time he was watching the other kids to get cues on what he was supposed to be doing.
Why can't drs that are in over their heads recommend others that can help? I don't understand. I guess it just takes us moms getting disgusted and doing it on our own. I found that insurance covers a limited amount of apptments a year and the therapists are more than willing to teach me how to teach him. In fact, the first thing all of them asked me was "How do you want us to help you?" Then they talked to me to make goals for all of us to accomplish.
I forgot too that I took him to PT to have his gross motor skills and strength tested. This he did great at.
Man this is getting long, sorry!! Anyway, if you want more info let me know and here is wishing you guys lots of luck!
Sue
Hey, the child asych also told me some of Jake's mood swings and obsessive problems are due to the stims so we put him back on Adderal that worked fine with focasing and attention but caused severe mood swings. We put him on a mood stabilizer with it and it seems to be working....It has only been about a week and so far so good.