Looks like we will finally get a neuropsych eval for DS8...

[Gingerbread Mama]

If you've read my threads, you know how frustrated I've been with DS8 and you know how I've been looking EVERYWHERE to try to find someone to help him (with not a lot of help from anyone that I've contacted :glare:)

 

I took him back to the VT, yesterday, to have his testing done. Again, they couldn't complete the testing. This time not because of his eyes, they didn't get that far. This time, it was because he apparently couldn't answer their academic questions. Being as this was partially a neurological developmental exam, they took him back alone, so I don't know exactly what went on. The woman who administered the test brought him out and said that she was sorry, they couldn't do the whole test "on his level" as he couldn't recite his ABC's and recognize numbers to 9... Okay, first I believe he CAN do those things. I'm not faulting the evaluator at all, I believe he couldn't, or wouldn't, do it in her office. I'm just not sure WHY. I'm also not sure how the questions were asked, so I can't try it at home and see if I get better results. My best guess would be that he was not in the frame of mind to cooperate, so he didn't. Which makes me :banghead:

 

The office is an hour from us. Testing began at 9, so we had to leave a little before 8, which meant we had to get up at 7. That is earlier than he's been getting up, then he got NO outdoor time to burn off energy as we usually do. I haven no idea if that played into the results. He, and his two siblings, also got in trouble before we left because they always goof off and it takes three times as long to get ready as it should. When I had to dig something out of the drain, because they'd knocked it off while acting silly in the bathroom (when all they were supposed to do was brush their teeth/hair and get out), I really gave them a going over. I'm tired of feeling like a ringmaster and I let them know, in no uncertain terms, that I was done. DD cried, of course, and ODS fumed, but YDS rarely shows any outward sign of being bothered by discipline. I do think it gets to him, and his way of showing it is either displaying WORSE behavior or becoming non compliant about something. So, I can totally see him just deciding to glibbly play the "I don't know" game during the test, particularly with his behavior being really off the charts over the last couple of weeks.

 

The upside is that the evaluator said that the doctor will probably be referring us to a NP for a more formal evaluation. Since I haven't had any luck getting our family dr to get us in with an NP or OT, I guess that's a blessing. OTOH, what if he goes into the NP and doesn't cooperate, can that skew his diagnosis or results? I would hope they would have enough experience to know when a kid CAN'T and when a kid WON'T, but I'm not sure I would with a kid I didn't know at all. Should I try to talk to him about this beforehand (the NP)? ODS's eval was years ago, I don't remember the dr spending much time talking to me beforehand. I think I filled out a check list, but I don't remember everything on it. I'm afraid he'll be diagnosed improperly if he doesn't cooperate, and that would be worse than no diagnosis, in my book. I mean I can't afford TWO evals, so he needs to give them correct information to go on at this one.

 

Also, would an NP know/see the difference in SPD and ADD? I've read that they can be confused, I really feel that DS tends more toward SPD. I'm not saying he doesn't have ADD, but I think SPD isn't out of the realm of possibility. I'm afraid the NP will diagnose ADD (or ADHD), which seems to be the SOP with NP's that I've had any experience or knowledge of, and we wouldn't be treating the correct or only issue. I don't want to put him on, what I consider, a dangerous medicine if that isn't the only way to help him. Especially, if that isn't what he needs at all. I'm terribly afraid of ADD/HD meds anyway. I've seen too many kids become zombies or then get terrible side effects from those meds that they then treat with more meds (or they play the switching game, "Well, that doesn't work let's try this. Nope, that doesn't work, either. Now try these.") I have to admit, I probably don't want the ADD/HD diagnosis to keep me out of the hot seat on putting him on a med I'm afraid of OR refusing him a med and then being wrong in doing that.

 

So, now I'm in a pickle. At least someone is doing SOMETHING. I'm just not sure it's the right, or only, thing that should be being done.... Should I go with the referred NP first, then try to scrap up money for an OT eval if that doesn't go well. Should I try an OT first? What to do?

[PeterPan]

Ok, I'm not clear. Your insurance requires you to have a referral before you can get the NP eval? Yes, take it. Don't necessarily take the np they suggest (ask around and confirm it's who you want), but yes get the np eval.

 

But here's what I'm confused on. Why didn't they finish the developmental exam? They don't need to do the things she was saying to check convergence, focusing, or anything else. They checked it on my UTTERLY NON-COMPLIANT three yo, so I'm sure they could check it on your 8 yo. Frankly I would talk with the doctor and figure out what went wrong. Sometimes these places let idiots do the really boring testing (flipping through a book and recording their answer A,B, C as they look at the picture, that kind of thing), because the doctor's time is more valuable than that assistant's. Our first time through, we had the lead therapist do the testing. 2nd time we had one of those, well I guess I'm not very nice about it but yeah one of those less than stellar people.

 

It sounds like you made a lot of effort to get there for this testing. I hope you can talk it through with the doc and get it straightened out. His willingness to recite ABCs would have in no way hindered that doctor's ability to see what s/he needed to see about eye function.

 

BTW, why are you so stuck on this meds for ADHD thing?? Ours didn't recommend them. Not all kids do. You want the right name for the problems so you can pursue your options and make your best choice. I have no opinion on meds, as he didn't suggest them to us. If there's ADHD in addition to sensory, your OT will end up referring you for the np eval anyway. It's not like you get out of it. Well you can get out of it, but then you're just doing yourself a disservice, not getting the information you need to make choices. But there are more choices beyond meds and getting the proper diagnosis does NOT mean you have to put him on meds. I'm sure there are nps out there who push it, but not all do. Talk with your prospective np first and see.

Edited April 25, 2012 by OhElizabeth

[FairProspects]

Also, would an NP know/see the difference in SPD and ADD? I've read that they can be confused, I really feel that DS tends more toward SPD. I'm not saying he doesn't have ADD, but I think SPD isn't out of the realm of possibility. I'm afraid the NP will diagnose ADD (or ADHD), which seems to be the SOP with NP's that I've had any experience or knowledge of, and we wouldn't be treating the correct or only issue. I don't want to put him on, what I consider, a dangerous medicine if that isn't the only way to help him. Especially, if that isn't what he needs at all. I'm terribly afraid of ADD/HD meds anyway. I've seen too many kids become zombies or then get terrible side effects from those meds that they then treat with more meds (or they play the switching game, "Well, that doesn't work let's try this. Nope, that doesn't work, either. Now try these.") I have to admit, I probably don't want the ADD/HD diagnosis to keep me out of the hot seat on putting him on a med I'm afraid of OR refusing him a med and then being wrong in doing that.

 

They should definitely be able to tell the difference between these two. Ours flat out said no ADHD, just SPD. They did recommend fish oil and vitamins though.

[Gingerbread Mama]

Hmm, ok, let me try to answer...

 

No, our insurance does not require a referal to anything. If I could get into an NP or OT on my own, they would pay (or not pay if they don't cover that particular service) accordingly. I just don't know WHO to go to, I don't know who's good/who's a quack. This is a poor economic area, the only LOCAL people we have are "talk therapists" who decide your kid has XYZ and send a statement to a dr who then writes him a prescription for various drugs. I think THAT is quackery. I know that is the only viable option to many of these people, I don't blame them for taking it, but I wouldn't trust MY kid to them. I know our insurance doesn't do coverage for anything deemed educational, so I know I'll likely end up paying for most of it OOP. That means I can't fiddle around with 10 different drs. I need to strike it right pretty much the first time. The OT place that I called told me THEY required a dr referal, they didn't care that my insurance did not. I called my dr to see if he could refer me to them, or someone else that he trusted, but I had to leave the message with his nurse (twice) and haven't heard back.

 

Um, the meds, I guess I do appear stuck on them. It's not my only focus, or fear for that matter LOL, but he is so tiny and we only just got him to eat normal meals. I really worry that putting him on meds would make that a wasted effort or stunt him further. That is my *physical* concern with them. Also, having been the person to administer psych meds to kids in PS, I saw way too much. Little Johnny who changed meds every other week because the dr decided this didn't work or that would work better, Little Suzy who took ADD meds and then became depressed so we had to give her an anti-depressant, which then made her psychotic so we were given a mood stabilizer to level her out... I saw a lot of these ADD kids on tons of medication at a time. I sort of view ADD meds as a can of worms, you could end up worse off than before you opened the bottle, KWIM? If he has issues, I don't want to further compound them by creating more issues with meds. I know we don't HAVE to give meds, even if they are recommended. I'm just thinking ahead to saying "We don't want to do meds." and thinking that perhaps we'll hear "Well, then I can't help you." because they think I'm wasting their time and THEN what?

 

I *think* what I'm asking is: Would an NP ever be able to diagnose SPD? Or would that be solely the domain of an OT? If the NP can't, and might diagnose ADD incorrectly, should I be working my hiney off to get in to an OT? I'm going to take the NP referral, and she says he's very good and I trust her, but I'm just wondering if I should try to get an OT eval out of the way before the NP sees him, and have that report in hand for the NP? Or would it matter?

 

As for why they couldn't finish the test: They did finish A test, not the one she tried to start with. She did one based on either age/grade first, and he couldn't perform because he didn't (or claimed to not) know his ABCs and numbers to 9. So she dropped him back a level and finished, I think, the test on a lower level. This wasn't solely a vision exam (although I asked if they had done those tests, and the evaluator told me no that they couldn't because he couldn't perform on that level, either?) this was a neuro-processing evaluation. The VT doctor will have her report ready on Tuesday and is supposed to call me that morning to discuss it. I'm going to call and ask if the report can be emailed to me to read it before I talk to her and so I have something to go on while I talk to her. I'll ask her why the vision part couldn't be done, I did find that odd, because I know I've seen kids in there who were much younger than him. Maybe the evaluator didn't understand what I was asking. She also seemed reluctant to talk much, because my kids were in the waiting room with me. She just kept saying "Now, she can tell you more about that after she writes up the report." I think she didn't feel comfortable telling me anything in case I misunderstood and tried to say later that she told me something else? Maybe, I'm not really sure.

 

I've had too much time to worry about this :tongue_smilie: Plus, I've seen how badly DH's life spiralled out of control when he had similar issues that his parents ignored, so I don't feel that "wait and see" is a long term viable option. He's 8, nothing has changed in years, it's time to take some action. I'm just paralyzed by the fear that it'll be the WRONG action and I'll be to blame for messing him up worse. :001_unsure:

[MomatHWTK]

I think it's probably a good thing that the child does his "worst" during the eval. I know it feels terrible when your child, whom you've taught for years, tells people he doesn't know something- BTDT! But, you want them to see what the child is faced with daily and the reality is that if the child doesn't get the right rest, exercise, etc. this is his situation.

 

You want them to see him in his untreated, unaccomodated setting because that identifies the challenges. If everything goes smoothly, then you end up looking like you are overreacting or it's a nurture problem. My DS was so wound up and uncooperative during our first round of evaluations that the therapist is going to have to re-do some of them at a later date and for other just noted that the results aren't accurate. But, she learned a lot of what she needed to know from the fact that DS couldn't/wouldn't cooperate.

 

The search for therapies, treatments, etc. is an ongoing process and if the evaluators only saw our child at his best- we'd get much less help in the long run.

 

I say this after about 18 months into the process- what I was doing to bet DS at his best was me accomodating his needs without realizing it. There will come a time when he needs to work and be away from me and he will need coping skills and/or written acknowledgement from a professional to make sure he gets what he needs in those settings. In hindsight, I didn't realize how much I was changing our days and interactions just to meet his needs. He was my child and I was just raising him, KWIM?

[PeterPan]

It's not going to be the wrong action. Might be the wrong person for the particular practitioner, because idiots and the unhelpful do exist. But it sounds like you're going to need all three (OT, np, and VT), so you might as well keep plugging away. I would think this VT doc would refer you to OT if he saw indications of needing it. It's really easy to mis-diagnose when you're self-diagnosing.

 

ALL the nps I called were MORE than happy to talk with me on the phone before scheduling an appointment. Just keep calling in a wider and wider circle till you find one you feel confident in. Hopefully the one the VT doc suggests is good!

 

Hope your VT doc comes up with something helpful. :)

[Gingerbread Mama]

They should definitely be able to tell the difference between these two. Ours flat out said no ADHD, just SPD. They did recommend fish oil and vitamins though.

 

That is good to know, thank you!

 

I think it's probably a good thing that the child does his "worst" during the eval. I know it feels terrible when your child, whom you've taught for years, tells people he doesn't know something- BTDT! But, you want them to see what the child is faced with daily and the reality is that if the child doesn't get the right rest, exercise, etc. this is his situation.

 

You want them to see him in his untreated, unaccomodated setting because that identifies the challenges. If everything goes smoothly, then you end up looking like you are overreacting or it's a nurture problem. My DS was so wound up and uncooperative during our first round of evaluations that the therapist is going to have to re-do some of them at a later date and for other just noted that the results aren't accurate. But, she learned a lot of what she needed to know from the fact that DS couldn't/wouldn't cooperate.

 

The search for therapies, treatments, etc. is an ongoing process and if the evaluators only saw our child at his best- we'd get much less help in the long run.

 

I say this after about 18 months into the process- what I was doing to bet DS at his best was me accomodating his needs without realizing it. There will come a time when he needs to work and be away from me and he will need coping skills and/or written acknowledgement from a professional to make sure he gets what he needs in those settings. In hindsight, I didn't realize how much I was changing our days and interactions just to meet his needs. He was my child and I was just raising him, KWIM?

 

You're right. It's so hard. She looked so apologetic when she told me he didn't know his ABC's and numbers, it felt like "You poor dear, what HAVE you been doing with him?" I'm sure that may not be the manner in which it was intended, it was just that this wound is so raw right now.

 

I know it's better that he show them how he is at home, not just be sweet and compliant, and then have them think I just have some mental need to see a problem with my kid LOL I think it just made me want to scream "Are you freaking KIDDING ME? Count to nine. Right now! Show him a number - tell her what it is." I was also mad that I *had* worked hard to get there, and then he shut down the test by saying he didn't know things. Now, maybe he was confused and genuinely didn't know...or maybe he didn't understand what they were asking....but right then I was tired, I've been in the car WAAAAY too much this past month for all these appts, my other two kids were working on school work they could have been doing at home.... It kind of made ME want to act like a 2 year old and stamp my foot. :lol:

 

It's not going to be the wrong action. Might be the wrong person for the particular practitioner, because idiots and the unhelpful do exist. But it sounds like you're going to need all three (OT, np, and VT), so you might as well keep plugging away. I would think this VT doc would refer you to OT if he saw indications of needing it. It's really easy to mis-diagnose when you're self-diagnosing.

 

ALL the nps I called were MORE than happy to talk with me on the phone before scheduling an appointment. Just keep calling in a wider and wider circle till you find one you feel confident in. Hopefully the one the VT doc suggests is good!

 

Hope your VT doc comes up with something helpful. :)

 

:grouphug: Thank you, that helps. A big part of the problem is that I'm the ONLY one trying to find out what is going on. DH is the "stick your head in the sand until all heck breaks loose" type, my mother helps me a lot, but she has no idea what to do with a non NT child, and she is in the process of retiring which is leaving her stressed enough.

 

I think I'll try calling his office and explaining that we will probably be referred to him and asking if he can answer a few things for me. I honestly haven't met many dr's who will do that. I've had ONE in everyone we've dealt with who called me and talked over something before seeing me. All the others don't even want to spend 5 minutes in the room with you when you're there, I couldn't imagine them spending their precious time on the *phone* with someone they weren't even bilking (uh, I mean billing ;)) yet.

[PeterPan]

Don't even be bashful about asking! I have a right to ask basic things like how long the testing will take, what tests he'll likely run, how many pages his reports are, how long it takes from the testing to the parent results session, what his specialties are, his feelings on homeschooling, where he sits with the meds thing, etc. Don't be bashful or make excuses. If you're looking at private neuropsychs, they often don't have secretaries, meaning when they call back it will be them. All the ones I called were happy to talk with me directly. I didn't get to any of them directly, was always leaving a message, meaning when they returned it they had chosen a convenient time for them. So definitely talk with them. Hopefully you'll find a good one! :)