vent -resentment, unsuccessful meds,IEP

iVillage Member
Registered: 01-22-2004
vent -resentment, unsuccessful meds,IEP
12
Fri, 06-19-2009 - 9:25pm

I'm tired of trying to 'figure out' my DS who is now 12. I'm tired of going further into debt driving hours to doctors that aren't covered by my insurance, for tests and/or counseling not covered by insurance. (I live in rural place without even a regular child psychiatrist, let alone a neuropsychologist) I'm tired of trying med after med, and combo of meds after combo but never seeing any positive results on my end. (Nor is my child able to tell any tangible positives - which by this age should be happening) I'm tired of hearing the people around us (family, school etc) second guess me (often in front of my kids). I'm sooo close to just giving up.

My life and my 6yr old DS are being ruled by DS 12's situation. (I say it w/out DS 12 included because on top of everything else he has such a fast 'recovery rate' that little one and I are the only two who appear to suffer any long term effects. I can't get DS 12 to care about his condition, be invested, etc at all) I still don't even know that I believe we've gotten the complete diagnosis - not that the dx even matters I guess - if I could just figure out what works (behavioral/cognitive restructuring, meds any combo thereof- I don't care as long as it works) and make it keep working for more than one instance. I hate the bogus IEP's and the bogus IEP 'process' that all end up looking cookie cutter, and dismissing my thoughts while never addressing any real workable accommodations. Heck, his last set of organizational objectives weren't even 3 part, let alone 4 part measurable/observable and they hinged on the phrase "will be self motivated to...".

I just need some support - not even necessarily fix it/fight it advice. I'm not there right now, I'm too beat down. I love my kids - really I do even though it doesn't sound like it. I'm really good at my job (btw I'm a special ed/reg. ed teacher - which I swear makes everything worse not better), I cognitively KNOW this stuff and yet I feel useless, stupid, angry, and alone. Every school year gets worse and I don't think the summer is enough to recover anymore. I've basically had to give up any free-time, friends, a fiance, etc in this process and I'm about out of anything else to give.

Please tell me that someone here has BTDT.

Lissa

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iVillage Member
Registered: 05-05-2007
Fri, 06-19-2009 - 11:13pm
What have the doctors said so far? What does he have an IEP for? What are his behavioral issues that are affecting your family so much. You didn't go into enough detail to get a clear view of the story.
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Registered: 01-22-2004
Sat, 06-20-2009 - 2:21am

There's so much and I never know what's relevant or not...here's some high points of the journey so far.

When he was little I thought he might have something on the autism spectrum scale so I informally did the special education resource center's "key questions" on him. He had several of the characteristics but not glaring enough to say "yes, that's it" and some he didn't have at all at the time like food issues, aversion to physical affection, and social skills issues. So, I put it out of my head.

Currently the only labels he has are a written language LD that he barely still qualifies for, he's supposedly 'gifted' in math and science, and a medical label for ADHD all of which ends up being addressed (however badly) on his IEP. Oh, and he did a sleep study that did show some apnea but no treatment was prescribed because he was 9 and they don't use machines for children unless the apnea is life threatening. So, on top of everything he rarely sleeps truly well even though he's in bed 'asleep' sometimes up to 11 hours.

From the beginning, we had a weird route filled with my AS worry, an "unexplained developmental coordination delay", a right side weakness, speech and musculature issues, a neurologist who wanted an MRI to check for suspected very mild CP that didn't show what she was looking for... but the damage during his 27 hour labor and emergency c-section could have been "smaller than a pin prick and may not be discernable". However, "w/out it showing up we must say we ruled it out". (I had to accept that as a definitive answer but to this day when he runs he's awkward and has to concentrate on his form or his head lulls noticably toward his right shoulder.)

He did occupational therapy for sensory integration problems (plus horrific pencil grip and handwriting - still problematic today), speech therapy etc all before anyone ever mentioned thinking he may have ADHD. In first grade after Christmas the school wanted us to do the Connors because he was often not following directions soon enough. (Could have been not listening, not caring, poor motor planning, ADHD, daydreaming...) The teacher and I did the rating scale and then given that result the guidance dept did the BOSS. Then he had an intake with a psychiatrist to see "ADHD or not" and after reading the school report and 15 minutes in the office he said "yes". (I remember agreeing at the time because DS, then 6, explored the man's office shamelessly touching things and climbing over the arm chair instead of sitting still like he should have - thus making himself look over active even though normally I wouldn't have thought that.) So, at the beginning of 2nd grade we started treating ADHD with meds and therapy (LPC who did things like the game "Stop, Think, Act") and also had to do "vision therapy" (due to eye muscle problems).

We've tried different doses of adderall, adderall XR, ritalin, *something I can't recall right now, daytrana, straterra, focalin, and now straterra and vyvannce together. Honestly, I don't think I've ever noticed a real difference with any of them except that some made him have something similar to "roid rage". Well wait, focalin seemed to have some promise at the first day's in-office trial but it affected his heart rate too drastically and the doctor said we'd try one more trial another day but that if he reacted the same he couldn't take it. (Of course he did and we had to stay there for hours past the normal time waiting for him to normalize before I could start the 3.5 hour drive home)

I remember the summer before 4th grade a neuropsychologist said that his IQ is very high but that at the same time 98.6% of the population had better ability to process through a task, complete it etc and that ADHD explains the gap between his gifted 'verbal IQ' and his low average 'performance IQ' as well as his frustration. ("Must be hard to be so smart but come off looking so bad")

BUT If the acid test to prove ADHD is that they improve on the meds and we've tried all these meds for over 4 years now, then what's my son's deal? I force these chemicals down him - some of which have made him sick, seem like he's on dope, or seem like he's angrier than he really is and yet there's never any of the good that they are supposed to do. Meanwhile, he gets in trouble for 'forgetfulness', impulsive choices, not following through, playing with items on/in his desk, disorganization (both with objects and his structure in writing), poor motor planning, and a general lack of "self motivation". - All of which screams ADHD.

At home I walk this line between holding him accountable and feeling like I'm working with someone who's much younger than he is when we're trying to DO anything. When he thinks, talks, explores it's like he's older than his age. The gap is sooo strange because it's hard to be discussing physics with him one minute and then find myself having to be so directive over teeth brushing, chores, homework etc. Plus, the over-reactions to a lost toy or a torn trading card drive me nuts. It's gotten worse as my younger son has gotten older. The little one is 6 and I swear he can follow through, do chores, get dressed, do teeth etc more effectively than my 12yr old.

He has some friends but I think sometimes he misinterprets situations that 'normal' kids wouldn't. He makes pretty good eye contact with his peers and my family but still doesn't often look at other people during conversations, even people at our church or my work that he's known his entire life. (The school loves to jump on the lack of eye contact as some indication of lying - I have to fight that every year several times a year.)

I think I'm just empty. There's nothing left anymore. Some days all I feel is mad/sad/frustrated. If he's so smart then why won't he follow even the simplest of teachings that we go over constantly. Routine rule: "Don't take toys/cards etc in the car for normal in town trips." He takes a bakugan anyway (without me knowing). Another routine rule that we cover often: "Don't drop change, the phone or other small items down into shopping bags that you are carrying into the house. There may be a hole in the bottom etc." So, said bakugan gets dropped in a grocery bag while he's unloading his share of bags. Upon returning from my trip to the car DS is teary eyed and getting adjitated because he thinks he's lost the toy. My brain immediately does splits: 1)grrr not allowed to sneak toys that way, 2)pretty natural consequence for ignoring a standing rule 3)did he really lose it or has he just not looked right (another problem he routinely has) Meanwhile he's getting more upset and swears that he's checked all his bags - will I give him the key to check the car. (Mind you he left the car unlocked in May and I was robbed of my purse, wallet, cd's etc even though he swore he locked up the car when he gave me back my keys from his last "I forgot something in the car".) Needless to say the toy was in the bottom of a bag from which I unloaded the groceries.

I'm sure it seems trivial but it's constant, 24/7 stuff like that, the pressure from the school, and new things that are coming up that make me crazy. He slapped his little brother yesterday in the face and for several minutes there was a print. Both were crying when they came to me and he swears they were just horse playing and then little one got 'too much up in his face' so he meant to just 'tap him - not get him that hard'.

What the heck - we don't hit in this house and he knows that!!!

I'm finally, completely coming to the conclusion that nothing I try helps and nothing I do matters and it's never going to get better.

-Lissa

iVillage Member
Registered: 05-05-2007
Sat, 06-20-2009 - 3:22am

Wow-that is a lot to deal with and I can understand your frustration. I get the feeling like there is something else going on here given his physical symptoms you have mentioned. The sleep issue is a big one and one that needs to be addressed. When children do not get enough sleep, they compensate by pushing themselves,

iVillage Member
Registered: 03-25-2003
Mon, 06-22-2009 - 11:26am

You have to drive 3 1/2 hrs to do a MED trial? Am I right in thinking from this description that each med got tried for a day? Or were some of them longer & it's just the focalin that only had that very short trial period?

I'll agree with the tonsil/adenoid check--my kid had 'em out & while he's still ADHD, he can sleep SO much better. That was for sleep apnea.

Also on sleep, have you tried melatonin? Seems to help with bunches of kids, and be fairly harmless.

But I see & hear your overwhelmedness. ADHD kids are tough enough when the meds ARE working! Is there anything you can scale back--not on your life, but on the details you're constantly checking up on? I mean...it probably wont scar him for life if he doesn't brush his teeth for a month, but if it gives YOU (and your 6 yr old) a break, that can be a good thing. I'd agree about making HIM "own" more of the issue--if it'll work!--it has with my now 12 yr old--but he requires support in the form of charts & organizational backups. I teach him the system, he uses it sorts of things.

Finally, you might want to wander over to the PDD-NOS/Aspergers board--they have a LOT of kids with ADHD/ADHD-symptoms who don't respond to meds and can probably give you a whole bunch of sage advice, too. They're perfectly nice & don't require you to have a formal diagnosis over there & I've found a number of useful ideas for my kid, despite him not being an Aspie & the meds do work.

{{{{hugs}}}}}

Megan
Megan
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Registered: 01-22-2004
Fri, 06-26-2009 - 6:14pm

Thanks for your reply. Sorry it's taken me so long to get back. He did have his tonsils out and his adnoids cauterized a year before the sleep study. (the sleep study was the last resort on the sleep/exhaustion issue) I've never really done anything else about the apnea because the doctor said it was a mild case, said that they don't do machines for kids and didn't offer any further discussion. I also hadn't really heard all the complications that can go with it - plus the little bit I did know I brushed aside when I was told it was a mild case. I'll do some research I guess - anything that might help is worth it.

I'm looking for a different doctor - one that is willing to look for comorbid conditions rather than ADHD alone.

Thanks for the book tip. I'll look for in in our library system and request it.

Lissa

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Registered: 01-22-2004
Fri, 06-26-2009 - 8:09pm

Hi. Thanks for the cyber hugs. Sorry I wasn't clear before. The doctor in Pa follows this process: new patient comes in unmedicated, and with a copy of a healthy EKG, gets vitals taken etc, takes a bunch of academic and IQ style tests, talks to doctor about life/school etc, takes a dose of new trial med, goes out to lunch/hang out for a couple hours, comes back, gets vitals taken etc, takes form B of tests, and then tests are compared, talks with doctor again. In most cases I'm told the patient tolerates the meds well physically, albeit with the slightly elevated heart rate and nausia, and then goes home to do the week or two trial before coming back to discuss overall results.

My son did this 'new patient' routine on a Mon in the summer of '07 with Focolin because after 2 years of trying with other drugs (and therapy) he still seemed way off-track and our doctor sent us to this specialist. His heart rate went extrememly high, wouldn't go down etc. they didn't even let us leave the office for the break because they were worried. Hours later when the focolin wore off it went down most of the way but not to where it was before. They arranged another appointment for a couple weeks later and we went home.

It turns out that he was very ill during that appointment and he ended up spending a month in the hospital for a ruptured apendix and omental infarction. (The trial was his first day back from visiting an out of town relative, hospital docs estimate it ruptured over a week before I got him back, family thought flu & didn't see a doc. By the time he came home he had passed absess, peritenitis, into sepsis and was so sick he wasn't in pain anymore and just seemed extra 'blah' about his rotton visit and having to spend any part of summer dealing with the ADHD.) During the month hospital stay there were three surguries, countless cts and xrays, wound vacs, lots of IV drugs (antibiotics, morphine, a coctail for the wound vac dressings every three days, TPN and lipids, etc) It was touch and go for the first 24 days and ADHD was the furthest thing from my mind. Once he made it through, we had 'at home recovery time' (including making him walk and me finishing the protocal to wean him the rest of the way off his medical morphine and oxy-something - that was interesting!!!) plus going back to school a month late to deal with.

THEN, when the surgoens and gastroenterologists cleared him, we went back to try focalin again, thinking that it was the illness that caused the problem. Nope, same thing again so focalin was off the table and we started with just strattera - thinking perhaps his body couldn't take a stimulant. After he tolerated that for a couple months without problems, but still wasn't markedly better, we tested different stimulants ending with vyvanse.

I can honestly say that I've never seen any improvement in how he is at home on any of the drugs. Well, wait, I think the nightly strattera must make a difference somehow cause when we tried to eliminate it he seemed extra 'wonky' even with the twice daily vyvanse in place. I don't know if the school sees a difference but on days that he forgets his vyvanse he doesn't do worse on tests or tasks than usual and with it he doesn't seem to make them any happier with him. Now, my family SWEARS that they think he's better in social settings with it than without it - so even though I don't see it, we keep trying. Also, he swears he feels no different no matter what we do.

That's a big part of what bugs me at this stage. I know I've read in several sources that by now kids are usually very able to participate in titraiting meds and can FEEL a difference on meds both positive and negative. It was the summer between first and second grades when we started ADHD treatment and now he's going into seventh. I think that somehow since he never feels any different anyway, no matter what we do, he's that much more resistant to dealing with his daily ADHD symptoms and all the strategies we've all tried to get him to use. When asked about his ADHD symptoms, meds, etc. he still says "I don't know." even after we've all explained it to him so many times, so many different ways. He'll say yes to "Do you think there's a problem?" but "no" or "I don't know" when asked if it's ADHD. I don't think I can survive another school year like this with him. I think the only reason we survived summers (minus the sick one) was because I don't have the daily grind of having to deal with his 'offness' regarding school, sports and social stuff on top of my own work. I'm so close to finding a special ADHD or military school - though I have no clue if he'd do any better or how to pay for it. I just know I can't be the day to day heavy anymore and for some reason this summer, even though we've already had three weeks off, I can't relax or 'reset' the button to get rejuvenated for the next year's start.

Bad place to stop this but it's already too long so...bye for now.

Lissa

Avatar for sabrtooth
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Registered: 12-03-1999
Sun, 06-28-2009 - 1:09am

The acid test of whether or not it's ADD is--do the anti-add meds make a difference? If they do NOT, then it's NOT ADD. Pretty simple. The tougher part is, what IS it?

With the symptoms you've described, what immediately jumped to mind is NVLD. This is an autism-spectrum disorder, and NOT easily diagnosed, mostly because not a lot of people recognize it.
http://www.nldline.com/
http://www.ldonline.org/indepth/nonverbal

If this seems to fit, the next problem will be getting a formal dx, and treatment. He's lost some ground, but I don't think it's "unfixable", if you get started now. What you might consider is moving to a more cosmopolitan area, with better, closer health care. I know it involves uprooting your family, & possibly finding a new job, but if it serves your son better, the resulting improvement in your stress levels might make it all worth while.

iVillage Member
Registered: 01-22-2004
Sun, 06-28-2009 - 8:40pm

So, is the 'if the meds work it's ADD and if not nope" thing widely accepted by the medical field? I've had two doctors tell me we just hadn't found the right drugs at the right doses yet and that it's still ADHD. Like I've said, I don't mind the ADHD dx per se but either he's a weird case that nobody can crack or he has another comorbid condition(s) that we haven't diagnosed.

Thanks for the idea about NVLD. I read an article at one of the links you sent and except for the wonderful spelling skills everything else fits a description of my DS as well or better than ADHD does. I remember briefly looking into this possibility sometime in third grade and beginning to try to 'flesh out' specifics of what teachers saw in the classrooms by making a chart of sorts- where things were checked as fitting "NVLD, ADHD, BOTH or NONE".

However, I also distinctly remember letting the district rep shut me down by telling me that all I was doing was fighting the ADHD diagnosis. Essentially she asserted that by not embracing the dx, meds, and therapy whole-heartedly I was hurting my son's chances of improving. They assume parents will hate the label because ADHD is a ridiculously stigmatized MENTAL HEALTH disorder as opposed to a MEDICAL disorder in our area - my insurance company classifies and contracts it out that way too. The distinction is a problem on so many levels IMO because whether a dx is mental health/medical shouldn't make a difference in how people are treated in general, let alone by schools. Someone with say a bipolar dx should have the same rights and respect as someone with say a spina bifida dx but around here that's not always the case and often parents are the percieved 'cause' of anything that's on the mental health axis.

I cognitively know that it shouldn't matter so much what she says but at the same time I feel strong fight or flight feeling when I'm in meetings with her. Plus, it's really hard to prove that you aren't in denial of something when to do so requires that you keep introducing possibilities that do deny or modify what's already been said. (Hope that made sense.)

I'm looking for a neuropsychologist that my insurance will cover and I'm hoping that I'll be able to convince him/her to cover all the bases this time. (Although, I thought I already had when we used a neuropsychologist for the eval between 3rd and 4th grades.)

Thanks again for your post. I guess I'll keep plugging away. I don't know about the moving thing right now with the economy the way it is. We may just have to keep traveling for better care.

Lissa

Avatar for sabrtooth
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Registered: 12-03-1999
Sun, 06-28-2009 - 11:06pm

True ADD patients have a neurotransmitter that is either weakly produced, reabsorbed too quickly, or not produced. Stimulants replace or augment those neurotransmitters. That is why even "nomal" people experience heightened concentration and reduced distractibility on stimulants. That's what an "upper" DOES.

An MD--a psychiatrist or a neurologist who knows what they are doing--will tell you that a stimulant can either work weakly, or too strongly, too shortly, or cause side effects, but it will ALWAYS "work".

The only time a patient does not notice ANY benefit at all, is when their symptoms are too strongly caused by SOMETHING ELSE. Something that stimulants do not affect, or unfortunatly, worsen, as in the case of Bipolar mania.

And doctors are human. Doctors are taught to look for the simplest, most common answer to symptoms. ESPECIALLY doctors who are not MD's, or are not MD's with a specialty in emotional and neurologic disorders. In other words, "When they hear hoofbeats in Texas, they don't look for Zebras". "District reps" are not trained to look for Zebras either. In fact, they are not doctors at all. *I* would not allow my child to be diagnosed by one.

iVillage Member
Registered: 03-25-2003
Mon, 06-29-2009 - 11:33am

Yeah, but based on what people have posted here over the years, different stims work diff. for diff. kids, so, for this poster, Focalin could well be the "right" med, but there's no way they can use it with that kind of a heart reaction (side effect). Goodness knows the ritalin group is still the most frequently used ADHD med out there.

Considering that ADHD is diagnosed by symptoms & also by lack of other diagnoses, then, sure, they could've missed something. But saying that if a kid doesn't react to ADHD meds, they don't have ADHD is a bit of a cop-out, IMHO. And not one I've seen in the medical stuff I've read.

I'd put it the other way around: reacting strongly to the meds (aka they help a bunch) confirms that the kid has ADHD. (and you can still have other things, too!)

For *this* kid, more "what's up" work does sound like a good idea, and it sure sounds like the school system is anti-helpful. I mean, what the heck does the diagnosis matter, start actually helping the kid--it's not like you're dealing with a parent who is refusing to medicate (THAT could be denial--questioning if there are other things going on isnt!)

Megan
Megan

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