Back from the eval... not what I expected.

[StephandOwen]

I'll try to keep this fairly short.

-PDD-NOS diagnosis, which we expected, but they said is "provisional". Basically, he meets the criteria for pdd-nos, but they think he may lose it within the next year or so. I expected this one.

-ADHD diagnosis, also provisional. They want ds's preschool teacher to fill out a teacher eval form and send it in ASAP. If she puts on there what they think she will, he'll get the ADHD diagnosis without the provisional part. They think that alot of what I've been passing as autism/pdd-nos is actually adhd. His impulse control is horrid. He runs away and would have no problem running into the road with cars coming. He climbs as high as he can and jumps down with no regard to his safety (by some miracle, he hasn't gotten any broken bones or otherwise serious injuries). He KNOWS "the stove is hot, don't touch the stove", but he'll reach out and touch it anyway. There are so many safety things that he knows, but he doesn't have the impulse to not do it. They want us to consider a low dose of medicine to see if it helps his impulse control.

-OCD. He did not get this diagnosis, but they think he has a lot of symptoms of it. They want to keep an eye on it and see how he's doing in a year to decide whether they want to give him that diagnosis or not.

My thoughts? A bunch of bologna. OCD? Yeah, I can see it a little. But everyone has quirks, right? ADHD? Eh, I don't want to admit it, but maybe. BUT, jumping right to medicating him? Isn't there other things we could try first? They weren't even open to it. They just want us to start medicating him RIGHT NOW and re-eval him in a year to see where he is. Riiiight.

:

[sbgrace]

Our RDI therapist suggested we stop Andrew from doing something (reaching up to the stove impulsively when he knew it was hot for example) and say "what's going to happen if you pull that down".

To my surprise it really did seem to help him. He's still impulsive of course especially when emotional. But he did seem to start to hesitate himself and think about what was going to happen if he did something. I saw an increase in his awareness when he wasn't angry anyway.

[HarperRose]

Meds?? He's only 5. Yikes.

I like the pp's suggestion of asking him that question. I might try it with my kids.

[williamsmommy2002]

That might help my kids also. I think meds at 5 are scary. My personal criteria would be that ds is not making good enough progress in school. While he is still in preschool, I would be very leary.

About the pdd-nos dx, do you really feel he is not autistic? I know you have had questions but I think many of us with "higher functioning" kids do. However now that ds is almost 6, I see that his brain really does work differently than most. His autism is atypical in many ways but does seem to really be there. We seem to deal very well with him when we take that approach. I'm not saying that is correct in your case, just something to think about.

[sbgrace]

Originally Posted by williamsmommy2002

About the pdd-nos dx, do you really feel he is not autistic? I know you have had questions but I think many of us with "higher functioning" kids do. However now that ds is almost 6, I see that his brain really does work differently than most. His autism is atypical in many ways but does seem to really be there. We seem to deal very well with him when we take that approach. I'm not saying that is correct in your case, just something to think about.

I too don't see how it could be provisional at this age if a person know what they were doing. My son is certainly atypical in presentation but the autism is pretty distinct in that nothing else fits those differences. I'd think they could rule in our out for sure by this age.

[mykdsmomy]

Your ds sounds a lot like my Boo. I dont understand the "provisional" stuff. Why do they think he'll grow out of it?

Boo is on two different meds and he's only 4. It was NOT what we wanted to do but his behaviors were getting to the point that not medicating him was putting him in more danger than using meds

Have you tried dietary changes? Feingold is one that comes to mind

Also, why do they feel it necessary to use meds? Is it because they want him more "manageable" in school? I had a psychologist tell me a few years ago that in the future, if a teacher suggests meds, "just do it".....she said "it's so hard on the teachers when the kids aren't medicated when they need it"

She was a real gem.....She was the one that re eval'd Boo a few weeks ago and restrained him during the eval......good times, I tell ya!

What have you tried so far in terms of dietary changes? Maybe we can suggest things you havent tried?

[StephandOwen]

Originally Posted by mykdsmomy

Also, why do they feel it necessary to use meds? Is it because they want him more "manageable" in school? I had a psychologist tell me a few years ago that in the future, if a teacher suggests meds, "just do it".....she said "it's so hard on the teachers when the kids aren't medicated when they need it"

(SNIP)

What have you tried so far in terms of dietary changes? Maybe we can suggest things you havent tried?

No dietary changes. We have a hard enough time getting him to eat anything. Changing it up is asking for a disaster. He's *finally* at 50% for height and weight right now.

As for meds... they feel that a lot of his "adhd symptoms" are dangerous to him. Running away they feel is adhd. The fact he has no impulse control and will run into a street without a second thought. He knows not to touch things on the stove, but would in an instant. Things like that. Their thoughts are that he's in danger of getting seriously hurt so he needs to be medicated. I don't think it has anything to do with school. He has tried to run a handful of times at preschool, but just a couple (and never made it far). He doesn't always sit on the carpet at circle time, but sometimes he does (and the times he doesn't he's not really disruptive- he just goes and sits in the reading corner instead).

[StephandOwen]

Originally Posted by williamsmommy2002

About the pdd-nos dx, do you really feel he is not autistic? I know you have had questions but I think many of us with "higher functioning" kids do. However now that ds is almost 6, I see that his brain really does work differently than most. His autism is atypical in many ways but does seem to really be there. We seem to deal very well with him when we take that approach. I'm not saying that is correct in your case, just something to think about.

I'm on the fence. Some days are really good and I think "yup, definately not autistic". And then there are days where I'm beating myself over the head and thinking "Uhhh.... duh... how can you not see it??". But lately the good days are far more than the bad ones. He's made huge progress in the last couple years! I guess the whole provisional thing is they said he's made huge progress in speech in the last year (he has, so much progress that people don't believe it until they see the testing results!). They think he'll make huge progress in social skills this next year. If that happens they want to take away the pdd-nos diagnosis.

[JohannasGarden]

Well, one thing to investigate is whether there are other ways to keep him safe. Only using back burners made a difference for us, for example, and at times we had a rule that I had to be physically between him and his younger sister at all times. My DS was very impulsive but developed much greater control some time after 6 1/2 yoa. The really impulsive kids (some at least) really are able to access their use of reason and talk things out in a way that they can't when they are younger--that was very true of my DS anyway.

IIRC he meets Cafe au Lait criteria for NF1 and is being monitored for the development of a second symptom? If that's still an active concern/possibility, you might want to check out the ctf.org discussion board for parents and see what other parents are doing regarding learning disabilities.

What med to they want to try, and are they concerned about the possibility of decreased appetite or increased anxiety? Those definitely don't always happen, but I would want a gameplan going into it about when to backpedal and how (some meds. are dangerous to suddenly stop taking even if side effects are bad).

Sherri

[mykdsmomy]

Originally Posted by StephandOwen

I'm on the fence. Some days are really good and I think "yup, definately not autistic". And then there are days where I'm beating myself over the head and thinking "Uhhh.... duh... how can you not see it??". But lately the good days are far more than the bad ones. He's made huge progress in the last couple years! I guess the whole provisional thing is they said he's made huge progress in speech in the last year (he has, so much progress that people don't believe it until they see the testing results!). They think he'll make huge progress in social skills this next year. If that happens they want to take away the pdd-nos diagnosis.

I could have so written your post...(how's that for a sentence?) lol...
Boo is so much like this. Some days I think....there is no way he's NOT autistic....and other days he seems "normal" (I hate that word).

The progress your ds has made is impressive.....and I hate to rain on the parade....but I know for us, Boo will improve in one area (slightly) and then all of a sudden, a whole new challenge pops up. Is your ds doing good overall?

Oh and as far as the diet, I totally understand I was just trying to throw things out there....but not sound "preachy"

[Bookmama]

My DS (OCD mainly and also ADHD) had a diagnosis of PDD-NOS initially, too, with almost the same exact provisions. Turns out for us they were right on target. He is not PDD-NOS and doesn't fit the criteria for that anymore.

This is a tricky combo to have. The meds that help with impulse control can also make the OCD symptoms worse. Basically, the meds do their job, which means he can sit and think things through more carefully. Which means he can obsess more. It's a very delicate balance. But my DS is on a really low dose of Vyvanse and it has made a difference for him. I wouldn't have done it without addressing the OCD at the same time, though.

[williamsmommy2002]

A lot of my ds's impulsivity is related to sensory stuff. If he is overwhelmed in a sensory way, he has zero impulse control. For a long time many of us thought he had adhd and I still feel that if you just were to do an adhd eval on him, he would garner a dx. However, I fell it is brought on by a different cause than most. He too has come a very long way. Less than three years ago he was almost non verbal, non communicative, could not follow one step directions, would avoid all kids, gave no eye contact, was stimming much of the time, would only eat 8 different things, it was thought that he was cognitively delayed. Now he is in a higher level special day class in first grade working at maybe half a year behind grade level. His expresssive speech is considered within the normal range as is his receptive so he only receives speech therapy for his articulation. He does have some communication delays still. He is starting to read and does simple addition and subtraction. He has friends at school and has just started playing with the next door neighbors who just moved in. He is friends with the little girl in first grade. He still needs help navigating play but has come so far in a short time.

However he still has autism. He still doesn't get non verbal communications or can't read faces. He still has the amazing brain that works in great ways. He still stims. He still needs preparation and a schedule and order. He still does much better with picture charts rather than spoken word.

[StephandOwen]

Originally Posted by JohannasGarden

Well, one thing to investigate is whether there are other ways to keep him safe.
(SNIP)
IIRC he meets Cafe au Lait criteria for NF1 and is being monitored for the development of a second symptom? If that's still an active concern/possibility, you might want to check out the ctf.org discussion board for parents and see what other parents are doing regarding learning disabilities.

What med to they want to try, and are they concerned about the possibility of decreased appetite or increased anxiety?

Yes, we already use only the back burners if we can. We don't leave him alone in the kitchen (or with access to the kitchen) when the oven/stove is on or hot. We have alarms on all the doors so when he tries to escape we know. He MUST hold hands when we're outside. Stuff like that. We're dealing with it, but they seem to think he needs to be some perfect little angel who does exactly what I tell him, when I tell him, without questioning it. Sorry, but that's not what I want. I love ds's spunkiness (most of the time ).

Yes, the neuro and geneticist think his spots are cafe au lait spots and he's being watched for NF1. The developmental dr he saw yesterday made it very clear that she doesn't think they are cafe au lait spots.... but had no answer for what else they could be.

They suggested 2 different meds. One was adderall. I can't remember what the other one was off the top of my head. I'm sure it'll be in the report when I get it. Again, they didn't seem to listen to my concerns about loss of appetite or loss of weight. They just kept saying to try the meds and come back in a year so they could re-eval him and see how he's doing. The whole med thing now falls on me and his primary dr.

Originally Posted by mykdsmomy

The progress your ds has made is impressive.....and I hate to rain on the parade....but I know for us, Boo will improve in one area (slightly) and then all of a sudden, a whole new challenge pops up. Is your ds doing good overall?

Shhhh.... don't kill the buzz! LOL! There are a few areas that have gotten worse and need a lot of help. But overall he's made huge progress!

Originally Posted by Bookmama

My DS (OCD mainly and also ADHD) had a diagnosis of PDD-NOS initially, too, with almost the same exact provisions. Turns out for us they were right on target. He is not PDD-NOS and doesn't fit the criteria for that anymore.

This is a tricky combo to have. The meds that help with impulse control can also make the OCD symptoms worse. Basically, the meds do their job, which means he can sit and think things through more carefully. Which means he can obsess more. It's a very delicate balance. But my DS is on a really low dose of Vyvanse and it has made a difference for him. I wouldn't have done it without addressing the OCD at the same time, though.

Very interesting! Thanks for the perspective

[AllyRae]

Just tell them that the medications on the market are not approved for children under 6 and you are not willing to put your child through the use of an off-label medication. Both Brandon's ped and psychologist wanted him medicated...at *2 years old*, but I told them that and it was the end of the converation. :

IMO, most of the "just medicate him and see me in a year" is just code for "we are booked solid, and your kid can be easily medicated and we can book some other kid in his place". I would demand some behavior therapy--at Owen's age, that can go a long way. It won't solve all your problems, and maybe medication is an option in the future, but unless he really truly is a danger to himself or others, the first option should always be to try to help him adapt without being medicated--unfortunately, doctors and many professionals don't see it the same way.

And I don't even know why I didn't think ADHD, but it makes sense!! I mean, Owen is so much more social, even from the beginning, than most autistic children I know--like appropriate social, not just being social and not picking up on the rules. He's got good eye contact when I see him, and he doesn't have a lot of the other autistic traits I generally see (he certainly does have some quirks that would fit in that category though, so don't think I'm saying he doesn't. I'm just saying that it seemed like autism would be a temporary label for him because it didn't quite describe him so there must have been something "better" that did fit him.) He always struck me as having some quirks, but not "quite being autistic" but he is lacking the impulse control for sure. ADHD slipped my mind, but it really does make a lot of sense! (Apparently it slipped a lot of people's minds since you kept getting a PDD diagnosis and not an ADHD one--is Owen generally calm and sleepy at appointments? LOL!)

ETA: Where does his sensory issues, way advanced reading, and speech issues come into play? Is that typical of ADHD (I don't know much about it, except when some of my students with ADHD or bipolar are rediagnosed as autistic or SPD)? Or are those completely different issues?

ETA2: And, how do YOU feel about the diagnosis? I know you have had some questions about his previous evaluations and diagnoses--does this one seem right to you, or was Owen jipped on a proper diagnosis again?

ETA3: Give him a big kiss for me! Can't wait to see him next week.

[StephandOwen]

Originally Posted by AllyRae

ETA: Where does his sensory issues, way advanced reading, and speech issues come into play? Is that typical of ADHD (I don't know much about it, except when some of my students with ADHD or bipolar are rediagnosed as autistic or SPD)? Or are those completely different issues?

I don't know, honestly. I hope someone who has experience with ADHD can come by and explain what, if any, connection there is. They did say that it's odd how smart he is, yet has so much difficulty with something so "simple". I've read a little today and it appears ADHD, autism/pdd-nos, SPD, and OCD are all somewhat related. Not that they're the same, but that a lot of the symptoms are similar and it's hard to pin point exactly what is going on, especially in a younger child.

ETA2: And, how do YOU feel about the diagnosis? I know you have had some questions about his previous evaluations and diagnoses--does this one seem right to you, or was Owen jipped on a proper diagnosis again?

I'm not convinced. I'm not saying he doesn't have adhd but I would have been a whole lot more willing to listen to the reasoning behind it IF they would have been willing to discuss other options. They weren't, they basically said to medicate him. End of story. I don't agree with that. I really don't agree with medication as a first step UNLESS he was in extreme danger or putting others in extreme danger. The eval seemed thorough so I can't really say it wasn't a proper eval. I'm just annoyed at the lack of options. It'll be interesting to see what the schools evals come out as. If the schools evals say adhd also, I'll be more open to that option.

[AllyRae]

Maybe get some books on ADHD and naturally treating ADHD since that will give you a more well rounded idea of what it is. I agree...I would have stuck my fingers in my ears (mentally, not physically. : ) if they kept telling me my only option was medication. :

Pull out The Out of Sync Child if you have it. I think there is an entire section on the similarities and differences between SPD and ADHD--some kids on both sides are misclassified. The biggest difference I can remember is that doing things like deep pressure, brushing, etc. will calm a sensory child if those are the issues the SPD child has, but the ADHD kid will still be riled up, despite regulating therapies.

But then you pull in the food issues--has it been determined if those are behavioral or sensory? Brandon's eating issues are behavioral, with a wee bitty bit of sensory mixed in (but mostly behavioral. We've been finding out that he actually DOES like what the therapist makes him eat, but his behavior issues make him extremely defiant and so he doesn't even try things unless the therapist requires him to do it--but he'll say he doesn't eat crunchy stuff...yet he'll eat cookies or chew on a sucker. He doesn't eat yellow stuff, but he likes spongebob mac n cheese. Silly inconsistencies like that. : )

Other than that, I don't know how eating issues and ADHD fit in together--except for the difficulties sitting still long enough to eat.

But yeah, maybe go to the library and get a few books, or look online. At least you'll get some more information than "just medicate him".

[mykdsmomy]

Originally Posted by AllyRae

ETA: Where does his sensory issues, way advanced reading, and speech issues come into play? Is that typical of ADHD (I don't know much about it, except when some of my students with ADHD or bipolar are rediagnosed as autistic or SPD)? Or are those completely different issues?

My ds8 has ADD (not formally dx'd yet but it's in the works). He has tons of sensory issues and was a super early reader (taught himself to read at 4.....I wanted to chalk it up to him being homeschooled but honestly, I didn't teach him to read, he did).
He is legally blind so we've all figured his sensory issues stem from that. However, it didn't account for his "quirks", his inability to get out his thoughts or questions, etc (I could go on and on).
I suspect he might be on the spectrum somewhere too....but here's another thought.
We are seeing so many kids now who "fit" much of the criteria of Autism, but they are not being dx'd because they don't fit the super strict guidelines....therefore, they are not getting services. I don't think it's an increase in awareness, I think it's an actual increase in children having new combos of dx's and not getting the label they need for services
It sounds like Owen has a big combination of things. You may never know for sure what causes what.....but I think we're going to see some new "labels" coming out in the future for our kids who have the ADHD, impulsive, compulsive, sensory, autism-ish flavor to them.

[lil_stinkyfeet]

Originally Posted by StephandOwen

I'm on the fence. Some days are really good and I think "yup, definately not autistic". And then there are days where I'm beating myself over the head and thinking "Uhhh.... duh... how can you not see it??". But lately the good days are far more than the bad ones. He's made huge progress in the last couple years! I guess the whole provisional thing is they said he's made huge progress in speech in the last year (he has, so much progress that people don't believe it until they see the testing results!). They think he'll make huge progress in social skills this next year. If that happens they want to take away the pdd-nos diagnosis.

That sounds EXACTLY that way I feel about my ds to a T.. He has an Offical PDD-NOS dx but I have chosen not to use it and not to have it put in his official medical record, It is only in his behavior health record.

I am not sure that he got an accurate dx and it isn't something that I can take out of his school record (or so they told me) They also told me that they wouldn't do anything different with him even if they had the official dx in his records.

The more progress he makes the more I think that he was likely mis-diagnosed. BUT there are some days when I think they hit the nail on the head lol... If his dx will help him as he reaches K then I will reconsider adding it to his official records.. but for now I am going to leave it out.

[sunflowers]

NO insight about the PPD-NOS but my ds was/is ADHD. I didn't start meds until we spent a year in behavior mod therapy. It was very useful for me as a parent. Not so much for ds but I found the parenting techniques incredibly useful.

I won't lie... I got a lot of pressure to do meds. I wish I hadn't caved and started him on them. He was prescribed Adderall (I don't think they use this anymore. It was quite a few years ago) and it totally messed up his metabolism, IMO.

[StephandOwen]

Originally Posted by sunflowers

He was prescribed Adderall (I don't think they use this anymore. It was quite a few years ago) and it totally messed up his metabolism, IMO.

I think they do. This is one of the two that the dr suggested. I can't remember what the other one was.