Got Coley's new daig

[Kristen (ColeysMom)]

I don't know why I'm so weirded out by this...

You know, I'm starting to think I'm perimenopausal or something...everything seems to be generating such big emotions for me lately. Is it the holiday season? Whatever...

Anyway, Coley's getting the ADHD diagnosis. His full written report will be sent after the holidays.

Now we all know this was my guess, so why am I freaked? Go figure. I generally consider myself a realist...I think I've been trying to convince myself that I'm pessimistic or something...or maybe with the school's assessment I thought, maybe, just maybe he wouldn't meet enough to get even the ADHD diag...

NOPE...it's actually a little worse than just ADHD...

He said he definately doesn't meet enough of the criteria for PDD, but that he could see 'shades of where he's been'

Of course he immediatly pointed out how good this is...realizing that he's no longer there, or has 'practically' overcome those obstacals...

I'm not going to try to explain why I might be feeling all out of sorts about this...I just am...and wish it weren't with Christmas & all.

This feels like the Christmas I got Coley's BEAM study report and neurology interpretation mixed in with the Christmas cards...:(

So, onto bottom lines...

medication came up. YUK! I didn't want to even think about this, and Dr. M can't even prescribe them, but he felt like he needed to provide the information, even though I wanted none of it! But just hearing him tell me something like, as he moves through school and more demands get put on his weaker skills...his anxiety will increase, and that could make it harder for him to manage.....how can you come to any other decision...I just want to cry!

And as for my burning question...WHAT CAN I DO to help him sharpen those skills...

Nothing!

WHAT?! Is that true???

I mean, he said practice & exposure and those sorts of things...c'mon! I can't just sit still do nothing...or what feels like nothing!

He did give me the name of a book, A website, And a therapy to look into, which I will post back because I don't have it infront of me at this moment.

And the thought that kept running through my head the whole time...he was there on REALLY good days!

Girls, he's not doing good right now and I'm so afraid that whatever has him out of whack will be lingering still on Christmas...he has had so few good family events...

He wanted me to rewind reality this morning so he could 'go back' and do it over...and was REALLY stuck.

Yesterday he accidently bit his finger while munching on baby carrots...he didn't hurt himself, but he was distraught by the fact that he mistook his finger for a carrot. I tried to make a joke out of it..."was it as good as the carrot?" but apparently that was what was upsetting him so much...that he almost ate his finger...so my joke only put salt in the wound.

He's not eating...surprise surprise....and when he does he ONLY wants carbs...he had an emotional breakdown yesterday and crashed after because he was BEGGING for peanut butter...it was rediculous, he looked like a heroin addict! UGH!

Oh, one other thing Dr. M raised. Coley got frustrated with a few parts of the test. The test is designed to go & go & go, until that particular child can't anymore. It get's incresingly more challenging as time moves forward. Coley did well cognitively...but as he got to things beyond his ability he wanted to know the answers...well of course Dr. M couldn't give it to him, so Coley began asking questions to try to figure out the answers...again, Dr. M couldn't help him.

So he got more & more frustrated...he wouldn't take "I'm not sure" or "what do you think" or "maybe" or anything like that for an answer...

And I see exactly the same things here...and although I complain about his persistant questioning, I do appreciate it and see enormous value in it...well until Dr. M put it another way...

"Fear of the unknown"

Girls this is freaking me SO bad! It's SO true...and does this mean that if I help him manage his anxiety about "new" things, that his curiosity will die or dwindle?

For the first time I am understanding where the 'stereotypical' behaviors go as the kids get better.

He used to know every neighbors name, address, and car. I thought he had an elephants memory...he doesn't remember names so well anymore, even ones he knew once...other things are more important...and I saw that as good...he's spending more time interacting with the neighbors than keeping track of their particular car's make & model. He remembers the kids name, not so much the adults. This is good.

But there are other things, that have changed in him, his art is not what it used to be...I hope this is coming out right...things that I thought were him, and I liked, but were really autism...

Like when he used to sing while playing (lining up cars, etc)...turned out that was a neuro misfiring thing that corrected with the anticonvulsants...

Why am I so upset by this? We've come SO far...even his bad days are better than his former best days...what the he!! is wrong with me?

[peglem]

Okay, your feelings are your feelings and dealing with them is enough without worrying over whether you have a right to feel that way. Perhaps when you saw the end of the AS dx you harbored this idea (although I know we really repress hopes don't we?) that maybe he was cured. Well, his neurology has come a long way and there is no reason to believe his development and progress is going to stop.

His curiosity will never go away, unless he knows all there is to know...or some monster crushes it by insisting that he can't know. Looking at the bright side- he's really going to learn alot and be brilliant!

Medication- I'm definately not a huge proponent of it....BUT, there are 2 sides here as well. You don't want him self medicating once he reaches his teens...and from what you've told me he is high risk for this. Its something to consider- it will not solve his problems but may make it easier for him to deal with them. Allie recently had an increase in her Lamictal. I'd been really dragging my feet on this. Tried lots of things that didn't work at all or made things worse. Finally broke down and tried the increase. The difference in her is amazing...transitions at school (her biggest prob there) are going smoothly. Very few meltdowns and she's recovering faster. Interacting better, she's for the first time in her life drawing on her own (like a 3 yo) just for the pleasure of it. I still don't feel great about giving her meds, but also feel like my medication predjudices robbed her of some happier times that she could have had sooner. The really frustrating thing is you really have to experiment with meds, unless you are very lucky and get it right immediately. That experimenting really feeds the anti-med sentiment because you often have to try alot of things that should work but don't...
As you can tell, I have really mixed feelings about the med issue- all I'm really saying is think about it...don't dismiss it entirely-and realize that giving meds is not a parenting failure (an idea I struggle with).

Didn't you say Coley has been ill recently? That probably is what's causing the recent he's not doing good right now and I'm so afraid that whatever has him out of whack will be lingering still on Christmas...
With Allie, problems start before illness is evident and lingers past the illness. (did you check for strep?:rolleyes:)

But there are other things, that have changed in him, his art is not what it used to be...I hope this is coming out right...things that I thought were him, and I liked, but were really autism...

I know what you mean here, there are some things Allie does that are absolutely autism that I just love and wouldn't want her to lose. On the other hand, even neurotypical kids grow out of things that we loved about them when they were younger...I'm not sure I'm able to separate out the autism from the child. And you can't really be sure it was just the autism-that stopping may have been a SE of the medication (there's that med issue again).

I feel like I've completely failed to make you feel better...Hang in there, you've been through much worse than this!

[Kristen (ColeysMom)]

You did Peg...of course trying to follow & respond to someone that is all over the map is a pretty hard...plus I know there are no real answers for much of this.

Which is one thing too, that sat in my head the WHOLE ride home...I can't really deal with not knowing stuff too...I drive myself absolutely batty digging up answers. Of course I can handle "there is no answer" for some things, but we DO have some clues...and I'll find those and try to tease out a logical answer for myself...then conduct my own scientific trials, etc.

So beyond the whole, did I bless Coley with this lovely trait....I find myself asking if this is a developmental disability or a personality trait...and really is it a disability...I mean really? I guess if it leads to anxiety, one could say yes, but it's exactly that 'discomfort' that motivates the 'search'...do other people that 'question' or 'search' feel no anxiety in their quest?

Ok, I really came back to post the links I mentioned earlier, not to pull you all into my hellish abiss of over-analyzation...

Here it is:

The website: www.chadd.org (http://www.chadd.org)
The book: http://www.amazon.com/Taking-Charge-ADHD-Complete-Authoritative/dp/1572305606/ref=pd_bbs_sr_1?ie=UTF8&s=books&qid=1229532937&sr=8-1
The therapy: http://www.cogmed.com/cogmed/sections/en/1.aspx

Ok, now I'm going to go play with my little princess...that should alter my mood, ya?

Thanks for being here!!!!!! :)

[Keggy]

Did this doctor offer you this diagnosis afer a comprehensive neuropsychological evaluation? I have seen doctors do this and be wrong. A CAP disorder can look like ADD.

My dd was offered that ADD dx at one point, and I felt it was a strong possiblility, but the testing proved otherwise. That is often the case with kids when their medication does not work, they don't have ADD to begin with, so improving their focus isn't going to help.

Is it possible you are also feeling that you don't belong here now because of the loss of a pdd dx? If so, get that out of your head.

[Kristen (ColeysMom)]

Keggy you crack me up! Do you honestly think a little thing like letters could make me leave...AHHHHHH! I needed that laugh, wait it's not going away...maybe it's a breakdown????

Are you kidding, seriously, I'd be lost without you guys! You're stuck with me, so get used to it! :D

Ok, yes it was a full neuro psych eval. Quite comprehensive. It involved 2 days of testing Coley in the clinic, an interview with us, a questionaire completed by us, a questionaire completed by his teacher, school reports, review of his medical/neuro-developmental history, and preliminary results of the parenting class we are taking...

Here is a link to the clinic: http://www.cfpsych.org/tony/NeuEva.htm
and Coley's Dr: http://www.cfpsych.org/tony/Tim%20Martin.html

But you do make a good point, I think we've talked about this a few times before too...I DO often question the whole CAP thing...Coley's too young for a reliable dx though still, so it doesn't make much sense to start investigating that too much right now, right?...it is something that we've discused with both his ENT & Audiologist, so it's on everyone's radar for now. I do think it makes sense for me to pursue the focus training for now though...if it helps, wooohooo, if not then I think we have our next marching orders...do you agree?

Is this how we got on the whole brainmapping topic????? I keep thinking about that, but everytime I want to refresh my memory I can't dig it up in the threads...

[Kristen (ColeysMom)]

OMG! OMG! OMG!

I started looking into Cogmed...first as you would expect the site sounds like a miracle...and it's so hard to tease out what is real and what is not with stuff like this....how much of that commentary is marketing versus reality, ya know?

So I go and look at the list of providers in my area, and there is a psych at a local practice, a HUGE very REPUTABLE practice that was born out of Harvard Medical School in the 80's!

So, not only are they good, but they are close too...so I call the guy...

OMG! OMG! OMG!

He says that they have been recently using the program with kids that are at the higher functioning end of the spectrum in addition to ADHD kids...

wait let me back up...they were hesitant to use it with 'spectrum kids' for a long time, but I guess some Drs in Switzerland tested a few higher functioning kids and they actually found MORE significant results the 'more' significant the diag was...so recently the US has been using it with them as well. So from that he said that Coley would likely benefit even more so from the program given that he still has those 'lingering' things....

AND...

what do you suppose the cost is...and of course it's so not covered by insurance right...

I can't even tell you the numbers that were flying through my head...doom & gloom...were never going to be able to afford it right.

So I'm expecting $5,000, $10,000, something devestating for a years worth of 'treatment'

Ready...


Seriously....


roughly


$750

Not cheap, but we can scrape that up! Hell, that's less than Coley's kindergarten program, that's less than the gym membership...crikie, I'll cancel the gym if I have to!

But what I'll likely do is use the WAY cheap equity line rates that are out there now...

And its SO easy...one appointment to get oriented to the program (training and set up) then it's all done at home.

I can't wait for DH to get home to talk about it...mom thinks I should see if school will kick in so that I can leave the program with them after or something...but I just don't even care practically....after thinking $5K, crikie, that's a bargain, ya know!

WOOOHOOOO!

I'm feeling a little bipolar or something today...mom thinks I need to get My thyroid checked...:rolleyes: Ya like I have time or energy to worry about me...DH is at the Dr right now...ugh, he had an accident, was rear-ended pretty bad in his work truck while sitting at a stop light...he's sore all over...I suppose I'll let him talk about that before I make him make a decision about this! LOL!

[RathyKay]

(((Hugs))) I've finally decided that the reason I look forward to evaluations is that I can see all the progress Tom has made, and I know how hard he's worked for it. Unfortunately, the evaluations don't really acknowledge the progress made. They tend to show how much farther ahead he needs to be. I always leave feeling like, we need to work on this, and we need to work on that. Coley has come a long way. You've done a fantastic job. And yet.... there is always something more to work on.

We did meds for 3 1/2 years. I don't regret it. Well, if I had known about diet back then, we would have stopped meds sooner. Of course, in our case, they were for seizures and we didn't have much choice. Anyway, I don't really have any advice. Just remember, it doesn't have to be forever.

Fall always seems to be the worst for Tom. I don't know what it is... exposure to new germs? Cross-contamination in the classroom? Anyway, we always seem to have more seizures in fall than the rest of the year. I guess I was wondering what goes on in the classroom with Coley as far as class parties and trading lunches and just how well he does watch what he eats there? With Tom... there is gluten in playdough and some glues and paints. It shows up in places you don't really think of. No, Tom isn't shoving this stuff in his mouth, but it gets on his hands, he doesn't wash them very well, he eats lunch or rubs his nose. Well, you get the picture. Plus there's the new school year with adjusting to the teacher's routines and expectations.

I'm not sure if part of your fear is of Coley's future. Mr. Kay and I actually had a brief conversation recently. He's kind of assuming that Tom will always be with us. I've sort of wondered about that myself, just didn't know what Mr. Kay thought. I like the idea of Tom being able to live by himself. On the other hand, I think he'd be lonely.:(

Off to pick up the kids from school...
(did you check for strep?:rolleyes:)
Snort! No, the question is "What did he eat?":o:p:D

[Kristen (ColeysMom)]

Hey Kathy...where the heck have you been?

Thanks for the pep talk on the meds...thankfully it's not something that has been recommended right now, so I'm feeling MUCH better after getting the information on cogmed...I think we were posting at the same time, you may have missed that.

I'm sure his diet and whatever bug that Audrey is fighting off has Coley all banged up too...he's so weird with his symptoms when there's a bug in the house.

Audrey, low appetite, interupted sleep, cough and running nose/sneezing.

Coley, no appetite, interupted sleep - nightmares actually & very restless, rash all over, and PDDish...for lack of a better word...no sneezing, no coughing, no fever, nothing!

Back from school today he seemed to be on the upswing. I managed to get a scrambled egg & one piece of bacon in him this am...coincidence? He's having steak for dinner right now.

We see his GI a week from monday. I'm just running out of s.boulardii, so I think I'll get some more and clean him out good after the holiday.

so, back to the other subject...I've been looking at the chadd website, and I was pretty impressed at this link they posted:

http://www.toysrus.com/shop/index.jsp?categoryId=3261680

I looked quick, and we are done shopping for the kids anyway, but what impressed me was that ToysRUs has a catalog that is designed for the special needs parent...how awesome is that! So I figured I post it incase anyone could use the link.

[Keggy]

Is Coley still 5? seems like he has been that age forever. They usually can test around 7.. but if he has a cap disorder you want to treat it asap because at 14 he will be hard wired.

[Kristen (ColeysMom)]

I know, huh! It's been a loooooong year with lots going on...

I need to update my siggy...but wanted these results and a new pic...silly, but obviously he's not in pre-school anymore either...anyway...

He'll be 6 mid-February.

We see his ENT & Audiologist on a regular basis, so it won't slip through the cracks.

DH is interested in cogmed, and I'm thinking that Christmas break is probably a good time to start it, so we will likely shoot for that, plus getting the additional write off for this year will help too considering we're all getting discounted returns thanks to Dubaya's stimulous-advance...:rolleyes:

Anyway, we should be in for our audiology & ENT follow-up before 1st grade starts, so sometime next summer. By then he'll be 6.5yo...his Audiologist did feel that it was a possibility before, with some of his behaviors and issues, but felt strongly that we needed to wait ... since we seem to have some overlapping symptoms, not sure if that's the best way to phase it... with his neuro issues & wax generation from his exposure to fructose, with his tube compliations, with his PDD, his sleep difficulties, etc.... many of the CAP symptoms could be caused by these... So Otolarangology has been doing what they can to eliminate issues so that we can 'see' what's left... does that make sense?

So I think cogmed could just help us further along that path too... the way Dr. K explained it to me, cogmed would help anyone improve their focus and attention... but if there is a specific 'connections' issue that exists with short-term memory, as they have witnessed with ADHD kids, and now some spectrum kids...that it should have larger benefits, by creating those connections for the first time.

So no matter what we should see some improvements within a month or so. After the 'connections' are established (or improved) then it's simply a matter of his daily use of those connections that will strengthen them naturally, so over the months we should see even more improvement...

If it seems like he still isn't hearing well or able to focus or process information, or being loud, etc. (and I forget some of the other things) certainly by the end of Kindergarten we should know we've got more to look into...and at that point I can call his audiologist to get CAP testing done before 1st grade starts?

Oh there was one other thing too...being a preemie puts him at risk for hearing impairment too. Some of which is hard to identify until a certain age...that was something else that they didn't want to muddy the waters, and something that is still possible as well. It's been a while becaue I sorta put it in the back of my head...but my memory tells me that the preemie risk is in the sorta 'detail' of the sound...like not being able to decipher differences in certain tones. Like being color blind is to seeing...a color blind person sees, and can even tell that most different colors are different, but that they can't quite tell green from red (is that right)...if I remember right...the hearing impairments that they commonly see with preemies are similar to this...plus worse, but those we would have identified already.

Thoughts?

[Kristen (ColeysMom)]

Well we've started Cogmed. Today will be day 9 of 25. We shouldn't see improvements for some time yet, but just wanted to let you know where we are.

I've also started reading the book Dr. M recommended and Coley's K teacher took me up on the offer to get her a copy as well. The book is a bit bleak at this point, tossing out all sorts of stats on ADHD kids...hopefully that tone changes!:(

I got a really nice e-mail note from Coley's teacher last week:

Just want to let you know Coley had a GREAT week! I am very
proud (and I think he is too) of all his hard work and dedication (ask him about his A is for apples page that he worked on today!) Have a great weekend and lets hope next week is as positive as this week.


Isn't that awesome! I didn't tell her we were doing Cogmed, so who knows??????

And oh, BIG tangent, but in response to:
Why am I so upset by this? We've come SO far...even his bad days are better than his former best days...what the he!! is wrong with me?

Got REALLY banged up after New Years, and just didn't get better...then started having a hard time seeing, bad head ache, sore arm...on & on...it finally scared me enough to get my arse into the Drs office...

Yep, wouldn't ya know it...mom was right...guess whose thyroid is on the blink! I'm on meds now & feeling better! I go back in mid-march for f/u...cross your fingers that it's normal sized, otherwise I'll need a biopsy...eeek! I don't have that particular thyroid issue in my genes (DH does though, ugh!) so I'm not concerned...so hopefully they've got the dose right so it goes to normal sized so there is no question, ya know!

So that's about where we are!

Pegs, got any interesting updates for us????? :p