Executive Functioning issues due to ASD vs. ADD

[texasmama]

I am unclear how to tease out the differences between these two...or if there are differences.  Maybe EF issues are just another term for ADD.  Do all people with ASD have some form of AD(H)D?  Recent testing and some assumptions on the part of the tester have made me ponder this.  On a practical level, do ADHD meds help with EF?  

 

So, wise and experienced ones, give it your best shot here.

 

I really need an hour alone with sharp psychiatrist, but since that is not gonna happen, help me out here.

[FrogMom5]

Years ago when I was in the thick of this, I was told by doctors and teachers that ADHD/ADD is part of the Autism Spectrum. Learning disabilities of many types were included on the spectrum.   Again, that was many moons ago, so it may have changed.  

 

I don't know if all people with ASD also have ADHD, but it does seem a common combination.

 

My experience with ADD meds. is Strattera.  Strattera helped ds #1 focus and concentrate better, but he did not become more organized.  Maybe he was better organized mentally, but outwardly we still saw the same messy room, papers, and so forth. 

 

Second ds just began Strattera.  He is organized in that his room is fairly clean, he tends not to lose papers and so forth.  He has less focus and sustained attention than ds #1.  I have no explanation for this.

 

Disclaimer:  I am not a doctor of any kind, nor am I a certified Special Ed. teacher.  I am just a mom and this is what I was told and observed.

HTH

Denise

 

 

[FairProspects]

I don't think EF=ADD. Both my boys have been evaluated more than once by different professionals and neither have received an ADD diagnosis. Both do, however, have noted EF issues that go along with dyslexia & giftedness. That frontal lobe of the brain that controls EF issues is also later to develop in some individuals, causing EF issues as children that may or may not exist in adulthood. That fact is independent of other diagnoses.

[PeterPan]

I did some digging on this a bit ago, because of course it's a pertinent question we all ask.  Here's one of the things I found.  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1201455/

 

Another http://www.researchgate.net/publication/239922129_GIFTED_OR_AUTISTIC_THE_'GREY_ZONE

 

http://www4.esc13.net/uploads/speech/docs/11_12/april/Executive_Functioning_and_Language.pdf

 

http://socialskillsplayhouse.blogspot.com/2012/09/differential-diagnostics-gifted_2842.html

 

http://www.hoagiesgifted.org/eric/asperger.pdf

 

Whether EF issues occur in isolation or always as part of another diagnosis is controversial.  What everyone agrees on is there's this notable overlap and co-morbidity with giftedness, ASD, EF issues, and ADHD.  And yes, that's the way an OT explained it to us also, that neurologically ADHD *is* part of the spectrum.  The fringes, but part of it. 

 

When you sift through those articles, the long and short is they're finding that extreme scores on the BRIEF were directly correlated with ASD diagnoses.  So while it's true that only a percentage (60, 80? I forget) of ASD individuals will get an ADHD label, it's also equally clear than extreme EF/ADHD is more likely to walk you into an ASD diagnosis.  

 

If you want even screwier stuff, look at pragmatics scores in kids who are diagnosed ASD with the ADOS.  http://jslhr.pubs.asha.org/article.aspx?articleid=1889651 This one cracks me up.  Basically you have swaths of kids with ASD diagnoses with the ADOS who get "normal" pragmatics scores.  And remember a pragmatics test is one of the few concrete ways a school has of diagnosing ASD for a student who seeks an IEP.

 

So I look at all those contradictions and just throw up my hands.  I say you have to treat what you see and not get too fluffed up in the labels.  For the parts that sniff like spectrum, treat them with spectrum tools.  For the parts that need ADHD tools or EF help, use ADHD and EF tools.  You have to use what works, because our kids are not little boxes with labels where just one fits, kwim?  There are 12 subtypes of ASD alone.  There is NO WAY to say nope, not this, only that.  The research just doesn't justify that.  The DSM is way behind the research and the research shows it's crazy complex, not a yes/no, b&w kind of thing at all.

 

With 60% of ASD kids having ID, I think it's further preposterous to say that those kids are going to present like gifted kids.  There's just such a HUGE range there in what you're seeing.  

 

So the answer is 60 or 80% or some kind of number like that overlap.  They didn't use to diagnose them separately and the DSM in fact forbade it (with the idea that it was assumed or unnecessary), and now the DSM *wants* them diagnosed separately so someone will slow down and actually treat the symptoms and deal with them.

 

No, meds don't improve EF.   :)   That's a whole rant by itself.  I think it's sort of odd to give meds (to kids, to adults, to anyone) without working on EF.  I think it's odd to act like everything is volitional, telling the kid to work on their EF, and not offer any support on the biological end.  

 

We've had EF threads.  Anything where you add a metronome, do digit spans (working memory), vision therapy, etc. etc. lots of ways to activate that part of the brain and try to spur some growth.  You CAN get growth there.  Heathermomster's metronome homework plus anything you want to throw in...  powerful and FREE.  The Linguisystems workbooks are a good way to wrap your brain around the things it's affecting and how you might start to work on them.  Karate is all EF, mercy.

 

[Crimson Wife]

 

With 60% of ASD kids having ID, I think it's further preposterous to say that those kids are going to present like gifted kids.  There's just such a HUGE range there in what you're seeing. 

 

Not to nitpick, but you've got your percentages flipped. It's 60% of those with "classic" autism (under DSM-IV criteria) having average or above-average underlying IQ, and the remaining 40% having ID. Now with the change to DSM-V and no more Asperger's or PDD, the percentage of those having average or above-average underlying IQ is going to be even higher (since by definition you couldn't have both Asperger's and ID).

[texasmama]

I am goofed up on migraine meds so I have less of my brain cells than needed to process all the information so far, but I appreciate every post.

 

My kid is not gifted.  He is average, with ASD (and the EF and CAPD issues which often tag along with this).  He also got a nonspecific Reading LD at the most recent testing that I have not even begun to process or dig into.  He is almost 15, for gosh sakes, and I'm not even sure what to do with this information at this stage.  I think I doubt the validity of that particular label.  He is most definitely not dyslexic.  He learned to read early and easily.

 

What I am working with here on a very practical level is whether or not this almost 15 year old could be helped in some way by ADHD meds, honestly.  I don't know the answer.  There may be no one in the world who knows the answer to that.  The only way to know for sure might be to try them.  At this point, there are many barriers to this, and I'm not sure it is necessary, but next year might bring us to the place at which we need to look at this option so I am doing some preliminary digging.  Also, I want him to have the information needed to make good decisions as an adult, when I am no longer making decisions for him.  At this stage of the game, we are partnering in decisions regarding his life and education.  

 

Frankly, he is educationally functionally impaired by everything he has going on, and he does not have the gifted IQ to make up for this.  He is not ID by any stretch, just average.  Average is fine without all of the other labels, but average becomes below average in functioning with the other alphabet soup thrown in.

 

Today, I am tired.

[PeterPan]

Well, not to seem too obvious, but is he having ADHD symptoms??  ABSOLUTELY it could make a difference if he's having symptoms and wants options.  You could also look at neurofeedback or Cogmed.  I'm getting my dd neurofeedback (Zengar) and she said the effect, to her, is like what she assumed meds would feel like.  The idea is to do enough sessions that you get a consistent "stick".  I've heard 20 sessions for ADHD and 40 sessions if you have ASD in the mix.  If you do that 2X/week, that's just 10 weeks.  For her, the change was instanteous and lasted about 3 hours.  Now it's holding longer and longer.  The OT said the idea is to get it to hold long enough that they realize how they *could* feel and start to do things themselves to hold it.  

 

The Cogmed, too, is a discrete period of effort resulting in big changes for some kids.  You already know this.  And you told me your friend who did it to no benefit (no being obviously a very b&w representation) had the kid on meds.  In other words, if you use meds to support the process,the brain isn't working as hard to do it itself.  I think the concensus is that Cogmed results in changes that become self-reinforcing.  So, for instance, you improve working memory or ability to focus, and then they do work that requires that and hold their skill, self-reinforcing.  Not permanent, but good.  

 

The thing I see with people is starting the meds and having them bring out pre-existing anxiety (ugh) or still having EF issues.  

 

I think you have to identify what you're specifically trying to accomplish so you can choose your approach.  No, it's not too late to try meds.  Now I've been told, and think this is probably the case, that some kids don't LIKE how they feel on the meds, having never felt that way before.  If you're used to riding your wave and then somebody says no, let's slow that jet ski down and make it a pontoon, they're not gonna like the ride, kwim?  Pontoons are good, but not when you're used to jet ski.  So I wouldn't say my dd LIKES how she feels with the neurofeedback, because she in fact doesn't.  But I'm committed to riding through this process and letting her explore her brain in situations to realize the advantage of her stability.  When I work with her now, in general she's much more stable and able to get in gear and do work.  

 

My hope is to have her do the Cogmed (if we need it) when she finishes the neurofeedback, and then after the Cogmed make a decision on meds.  I felt like she was too unstable even to do Cogmed without some intervention first, which is why we're doing the neurofeedback with an OT.  Turns out she also has a bit of a retained primitive reflex remaining that needed some work.  It's NOT too late to pursue these things.  Better now than having them be 20+ and beyond our ability to help.

[texasmama]

I do believe he has ADD symptoms, but there is so much overlap with EF symptoms that I am struggling with the category.  I broached the topic with him (sort of planting a seed) that he might have some degree of ADD and meds might help some at some point if he needs them.  He fully believes he has ADD, but his report/opinion is not accurate.  I am too close to the forest to see the trees.  I am asking questions of the most recent tester regarding this issue, as well, but I like to gather Hive perspective/experience.

 

I wish I had a million dollars for all the tests and all the interventions.  I would do it all.  Or at least try to get him on board with it.   :)

 

ETA:  He is very clearly not now, nor has he ever been, hyperactive.  All of his symptoms are in the impulsive, disorganized, losing everything areas.

[kathkath]

Ds had extremely low working memory scores (everything else was high or very high). That was the tip off that he had ADHD. Your dr can help you know better if it is ADHD and if he warrants a med trial. Good thing is that meds are in and out of the system--don't need to build up. You can try a week to see if it helps. You'll know if it does.

[sbgrace]

My son meets the diagnostic criteria for both. My understanding is that ASD and ADHD (either one alone) include EF issues. You can have ADHD (combined or w/out hyperactivity) w/ASD.

 

ADHD medications can improve focus. This can be an problem, though, if hyperfocus or OCD/anxiety are causing inattentivenes. This happened to my son. They can also reduce hyperactivity and impulsivity. They don't change underlying EF issues. Ideally you would be working on improving those issues along with medication.

 

I wish we could medicate my son without making the anxiety through the roof. 

 

 

[Terabith]

Honestly?  They are short acting.  I would be tempted to ask for a prescription from the doctor and try it for a week.  Or even less time.  If they help and don't have negative side effects, it's a win-win.  If not, then you know. 

[kbutton]

Well, I live with three people who have some form of ADHD, and one of them is on the spectrum as well. It's my understanding that all ASD folks and all ADHD folks will have EF impairment. Some ASD folks will have ADHD. Some people have EF without ADHD of one flavor or another, but as I understand it, that's pretty unusual. I think Russell Barkley has some articles that pretty much state that EF is ADHD, but I could be wrong on that.

 

Since it's all somewhat subjective, keep in mind that you also have people scoring their kids on a curve--my kids are completely different in how their issues present that it would be easy to compare them and score one of them as not being very ADHD-like. Over time, we've realized that's just not true. They both have ADHD (though we may find that CAPD is behind many of the symptoms for one child), but when we fill out Vanderbilt surveys, it's clear they both qualify for an ADHD diagnosis without any leap of faith. It's indisputable. (And if you fill out one of these forms, realize you are not supposed to agonize over it, and realize that they want more than one adult who knows the child to fill it out.)

 

I think my older son's ADHD meds improve his EF. They also improve his self-awareness. But, he is motivated, and he's at an age where he's sensitive to this--he has enough training and motivation to have good EF that maybe that's why we see it is a direct result of meds, whereas others might see those things developing separately. We saw a child, pre-meds, who wanted to do well but couldn't.  He's a Competent Carl type, so he wants to be good at things, and meds gave him the ability to be. I am fairly certain that things like inhibiting impulsive behavior are considered EF, so if meds make my son less impulsive, that is an EF gain. My other son is more wishy-washy (he's not on meds yet, but it's in discussion). He's slowly becoming more clued into why it would be nice to be responsible. I imagine if we'd given him meds before he became aware of that, we would not see a big bump in EF on meds. One of the only things my older son doesn't like about meds is that he is more inhibited and feels more self-conscious as a result. It comes up from time to time, but we frame it as a positive aspect even though it's annoying. We remind him that he's supposed to feel that way, and ADHD takes that away. His OT was very, very good about backing us up on that without lecturing at all. She really framed it positively. And my son knows he has much more control of himself (and therefore more choices in life) when he's taking his meds. He can see that direct connection most of the time.

 

Anxiety is a very big concern, but I will say that my son's anxiety dried up substantially when he started meds. The meds gave him more control, and more control gave him less to be anxious about. That is not everyone's experience, but it's so night and day different for us that I always mention it to people. I was sure it would ramp up anxiety, and I was wrong.

[Storygirl]

DS is extremely impulsive, and his meds help with that tremendously. He is able to reign in his emotions more and can focus on tasks more effectively. When his meds have worn off, these benefits go away, so they are temporary. Based on what he is like when he is off meds, his natural EF is not improving, but the medication does make a difference. A recent example -- when he is medicated, he can fold a basket of laundry. He doesn't like it, but he can do it. A couple of weeks ago he was having extreme difficulty with his laundry: the task was overwhelming to him; he cried; he sat next to the basket and accomplished nothing; he wadded up the clothes instead of folding them neatly. His reaction to the task was extreme. And then I realized that I had forgotten to give him his meds at lunchtime.

 

So do the meds help him with his EF issues? They don't make him into an organizational genius. He is still messy and forgetful and has trouble following through. But these issues are way better with the meds than without.

[PeterPan]

Honestly?  They are short acting.  I would be tempted to ask for a prescription from the doctor and try it for a week.  Or even less time.  If they help and don't have negative side effects, it's a win-win.  If not, then you know. 

Is it as simple as that?  When I called, they had this whole ORDEAL they wanted to put you through.  It was like a meeting with the ped for 45 min, and that would be a month out.  Then come back again for something, then again a month later for something.  It was totally crazy complicated.  And then, what would the cost be?  I've heard outrageous costs unless you have insurance.  We have a high deductible with our insurance.  Things do adjust down for doctor bills that get sent in.  I don't know about meds.  Like I had heard $350 a month before insurance adjustments.  That's crazy.

 

But yeah, if all I had to do was walk in and get a scrip and get it filled for a sane price, that would be nice, lol.  Maybe it just varies with the doctor's office?  

[PeterPan]

I do believe he has ADD symptoms, but there is so much overlap with EF symptoms that I am struggling with the category.  I broached the topic with him (sort of planting a seed) that he might have some degree of ADD and meds might help some at some point if he needs them.  He fully believes he has ADD, but his report/opinion is not accurate.  I am too close to the forest to see the trees.  I am asking questions of the most recent tester regarding this issue, as well, but I like to gather Hive perspective/experience.

 

I wish I had a million dollars for all the tests and all the interventions.  I would do it all.  Or at least try to get him on board with it.   :)

 

ETA:  He is very clearly not now, nor has he ever been, hyperactive.  All of his symptoms are in the impulsive, disorganized, losing everything areas.

If he has an ADHD diagnosis, then the EF you're seeing is part of the ADHD.  It's not necessary to separate them out.  And yes, that's how ds is.  His computer ADHD scores were hilarious, with inattention totally in the normal range but impulsivity blown through the roof.  Psych 3 goes OF COURSE that's what happened--he liked the computer aspect so he attended.  LOL  

 

I was going to crack a joke about men on tv who are impulsive (hello, JB Duggar) and thinking about where you want him to be long-term.  

 

Sorry it's not easy to sort out.  I can't help you with the funding either.  Sometimes the things we think we don't have the funding for we make funding for.  I have NO clue or guarantees that my attempts at these other things will help ds or dd.  Could be the neurofeedback is a grand waste, cogmed does nothing, and they still need meds.  In our house one parent has been radically opposed, something I can't override, kwim?  I think functional is good and functional overrides a lot.  It's just in our house I didn't feel like I had the moral high ground to override unless I did EVERYTHING that could be done without meds.  There will not be a sane option I haven't tried.  (I don't consider the cost of HBOT sane and dd can't handle 4 hours of exercise a day, meaning those aren't on the table, sorry, lol.)

 

I don't think being somewhat impulsive is the end of the world either, not if they at least know it's happening.  Our culture spends a lot of time slamming people and then turns around and kisses their butts for being who they are.  Think how they do that with ASD, calling them every sort of whatever, and then making them professors and world experts.  The whole slam, shazam process to me is so tiring.  We're trying to homogenize outcomes, and I think it's ok to look at your dc and his mix and decide if he can have a happy outcome WITHOUT meds.  What does his adult life look like?  Are these answers he needs to get through long division (temporary) or to get through life?  Only a percentage of people having seeming resolution of ADHD symptoms by 18, and of those I'm reading that actually a strong percentage still in fact have measurable ADHD processes going on in their brain per the scans.  So the real question is whether this can be part of a healthy mix that works in a career (reality tv star, MIT professor, online science teacher, whatever his plan is) or whether this is a dealbreaker preventing him from graduating and achieving his goals.

 

(You know I'm being a little lighthearted here, right...)

 

[kbutton]

Is it as simple as that?  When I called, they had this whole ORDEAL they wanted to put you through.  It was like a meeting with the ped for 45 min, and that would be a month out.  Then come back again for something, then again a month later for something.  It was totally crazy complicated.  And then, what would the cost be?  I've heard outrageous costs unless you have insurance.  We have a high deductible with our insurance.  Things do adjust down for doctor bills that get sent in.  I don't know about meds.  Like I had heard $350 a month before insurance adjustments.  That's crazy.

 

But yeah, if all I had to do was walk in and get a scrip and get it filled for a sane price, that would be nice, lol.  Maybe it just varies with the doctor's office?  

 

The meds are controlled substances, and in our state, docs seem to follow protocols from one of the big children's hospitals. You will have a ped appt. This is reasonable because the ped is on the line for the Rx and needs to be okay with prescribing it for your kid. Then you will have a one month follow-up. After that, it's more like every six months, I think. The office visit is not billed that high. The Rx depends on what rate your insurance negotiates. The extended release, long-acting meds are about 3x times the price as the short-acting for us. (Our doc tried an extended release first, or I wouldn't know). None of it approaches what I used to pay for allergy and asthma meds before I had shots and before Claritin, etc. became OTC. :-) 

 

You'll almost assuredly be asked to complete a Vanderbilt survey (and probably have someone else fill one out as well). You'll probably need to fill it out for the follow-up appointments as well.

 

You might have to show up in person every month to get the Rx from the receptionist, but some docs will put it in the mail (esp. if you provide envelopes/stamps and a monthly reminder call).

[kbutton]

I don't think being somewhat impulsive is the end of the world either, not if they at least know it's happening.  Our culture spends a lot of time slamming people and then turns around and kisses their butts for being who they are.  Think how they do that with ASD, calling them every sort of whatever, and then making them professors and world experts.  The whole slam, shazam process to me is so tiring.  We're trying to homogenize outcomes, and I think it's ok to look at your dc and his mix and decide if he can have a happy outcome WITHOUT meds.  What does his adult life look like?  Are these answers he needs to get through long division (temporary) or to get through life?  Only a percentage of people having seeming resolution of ADHD symptoms by 18, and of those I'm reading that actually a strong percentage still in fact have measurable ADHD processes going on in their brain per the scans.  So the real question is whether this can be part of a healthy mix that works in a career (reality tv star, MIT professor, online science teacher, whatever his plan is) or whether this is a dealbreaker preventing him from graduating and achieving his goals.

 

(You know I'm being a little lighthearted here, right...)

 

I agree with this to some extent, but living with three people who have ADHD and knowing a bunch more, including adults, including their spouses--it's not an insignificant cause of divorce and major disharmony. I am glad there are people who will run into burning buildings, but they have to live even when nothing is on fire and they are not on duty.

 

If someone is not going to treat ADHD, I think there needs to be some serious ownership taken of what that means (OhE, I totally believe you will help your kids do this). And in some cases, kids are getting this from one or more parents who may or may not have any clue what owning that ADHD looks like, or if they do, how to help. It's not fun being the neurotypical spouse of a person who does not own or know how to own ADHD. 

[texasmama]

He has never received an ADD dx.  Neither dh nor I have ADHD even a tiny bit.  (Well, dh is disorganized and loses things, but I think that is due to never learning these skills.  Chaotic family of origin.)  It has never even been on my radar, and I say that as a person who has worked for years with kids/teens who have ADHD.  Minus the hyperactivity, the rest is just really hard to sort out.  His working memory scores on past testing have been good, better than some other subscores.  These are normed cognitive tests such as the WISC and the Kaufman.  The last testing done by a private practice diagnostician (friend from high school) used a lot of more fine-tuned testing.  His working memory scores on one of the tests done was low.  So what the heck to make of that???  I don't know.  He did tell me that he gave up after awhile on some of the testing due to mental fatigue.  Dude.  That was $1100.  Don't just give up. However, I know that he did not just tank it for no reason other than being tired.  He usually tries his best.  

 

Here is our situation with "insurance".  We have a health share, not insurance.  Ds has a family doc practitioner, not a pediatrician.  It is quite possible he would prescribe an ADHD med, but not all will.  Also, it is an appropriate protocol to have an EKG prior to beginning a stimulant, and I would want one.  Not all ADHD meds are the same, and Straterra is not a stimulant.  We have no prescription drug coverage from the health share.  I have no idea how expensive these drugs are, and I know that it is not so simple as getting a script and trying it.  Many kids go through several in order to find one that balances the risk/benefit ratio well.  The dosage needs to be altered.  All of this means more meds, more scripts, all out of pocket.   I would need to see if ADHD treatment is covered for reimbursement on our health share.  Mental health services are excluded from coverage.  And it has been a very expensive year, with the testing, some dental work for the kids (all out of pocket), and upcoming orthodontic work for one which will be $1500.  I am not made of money.  I am not employed at this point.  Dh owns a small business which has taken a significant hit this year in loss of accounts.  Blah, blah, blah.  No blood from a turnip.  I can't not fill one kid's cavities in order to fill the other kid's ADHD med script.  

 

AND, even if a psychiatrist knocks on my door, brings an EKG machine, definitively diagnoses ADD, and offers me free meds for my son, I have to get him to agree to try them.  Teen boys are not the most cooperative regarding meds in general.  Mine is no exception.  I'm running a marathon barefooted here, and I am low on energy at the present.

 

So lots of barriers to even trying this.  And it would need to have a reasonable chance of success.

 

I am at the stage of crossing over into my son taking more responsibility for his life and educational choices.  He has some true strengths - strong work ethic, the desire to do well in his education, the ability to take outside classes and receive instruction from others, etc.  If I can present a very good case for doing one thing or another, he is able to be convinced.  

 

I will be pondering the things in this thread long-term.  This is a marathon here, and I am at mile marker 20!

[FrogMom5]

First, I do agree that neurofeedback is a good option.  We also looked at Zengar, but because the nearest professional was several hours away, we went with SmartBrain Technology at home.  Our preference would have been a professional, if one had been close enough.

 

Each thing we tried helped in slightly different ways.  We were also targeting slightly different things with each intervention.

 

Also, we only tried one thing at a time.  So, when kids were little, we used dietary strategies, VT, AIT, etc.  We do not use medication until they are well into puberty because it seems the side effects are more likely when meds. are begun before puberty.  That's my observation, no scientific lit. to back it up. 

 

Ds #1 was on meds. for about 2 yrs.  He came off and then about a yr. later, we tried the neurofeedback.  Hoping for a limited duration of meds for ds#2, but we'll see.

 

You may already know this, but in case you don't - Strattera is not a one week trial.  It is a step-up over several weeks.  Coming off of it is the same.  I don't know about other meds. If you try Strattera, it's a few months trial and is fairly expensive.

 

Everything helped, nothing cured.  Ds#1 rejected organizing strategies I found in books.  I told him that was fine, but find one that works for you and use it.  He did.  I have no idea how he does it, but he is manages his time and workload at college really well.  Again, I am hoping ds#2 will do something similar - especially since he also rejects all the strategies I present. 

 

I do agree it's important to zero in on the symptoms and their underlying cause, if you can, and treat that.  The labels are like a big stew or soup-they work together, or not, and everyone gets a different mix ladled into their bowl.

 

Denise

 

[texasmama]

Neurofeedback is the thing that appeals to me.

 

What I need is for someone to synthesize the relevant, at home and/or inexpensive options that I could most likely convince my teen boy to do.  We are not rushing to any docs for scripts today, so it would be good to look into other options to improve his functioning.

[FrogMom5]

He has never received an ADD dx.  Neither dh nor I have ADHD even a tiny bit.  (Well, dh is disorganized and loses things, but I think that is due to never learning these skills.  Chaotic family of origin.)  It has never even been on my radar, and I say that as a person who has worked for years with kids/teens who have ADHD.  Minus the hyperactivity, the rest is just really hard to sort out.  His working memory scores on past testing have been good, better than some other subscores.  These are normed cognitive tests such as the WISC and the Kaufman.  The last testing done by a private practice diagnostician (friend from high school) used a lot of more fine-tuned testing.  His working memory scores on one of the tests done was low.  So what the heck to make of that???  I don't know.  He did tell me that he gave up after awhile on some of the testing due to mental fatigue.  Dude.  That was $1100.  Don't just give up. However, I know that he did not just tank it for no reason other than being tired.  He usually tries his best.  

 

Here is our situation with "insurance".  We have a health share, not insurance.  Ds has a family doc practitioner, not a pediatrician.  It is quite possible he would prescribe an ADHD med, but not all will.  Also, it is an appropriate protocol to have an EKG prior to beginning a stimulant, and I would want one.  Not all ADHD meds are the same, and Straterra is not a stimulant.  We have no prescription drug coverage from the health share.  I have no idea how expensive these drugs are, and I know that it is not so simple as getting a script and trying it.  Many kids go through several in order to find one that balances the risk/benefit ratio well.  The dosage needs to be altered.  All of this means more meds, more scripts, all out of pocket.   I would need to see if ADHD treatment is covered for reimbursement on our health share.  Mental health services are excluded from coverage.  And it has been a very expensive year, with the testing, some dental work for the kids (all out of pocket), and upcoming orthodontic work for one which will be $1500.  I am not made of money.  I am not employed at this point.  Dh owns a small business which has taken a significant hit this year in loss of accounts.  Blah, blah, blah.  No blood from a turnip.  I can't not fill one kid's cavities in order to fill the other kid's ADHD med script.  

 

AND, even if a psychiatrist knocks on my door, brings an EKG machine, definitively diagnoses ADD, and offers me free meds for my son, I have to get him to agree to try them.  Teen boys are not the most cooperative regarding meds in general.  Mine is no exception.  I'm running a marathon barefooted here, and I am low on energy at the present.

 

So lots of barriers to even trying this.  And it would need to have a reasonable chance of success.

 

I am at the stage of crossing over into my son taking more responsibility for his life and educational choices.  He has some true strengths - strong work ethic, the desire to do well in his education, the ability to take outside classes and receive instruction from others, etc.  If I can present a very good case for doing one thing or another, he is able to be convinced.  

 

I will be pondering the things in this thread long-term.  This is a marathon here, and I am at mile marker 20!

 

I was writing and did not see this post.  My doctor gave us a sample packet of Strattera for free. It is a 45 day trial.  Maybe your doctor has the same for whichever med. you want to try?

 

I wish I knew a good psychologist that would spend that hour with you for free.  Prayers that someone will be put in front of you with the info. you need.

Denise

 

 

[Lecka]

I am skipping to the bottom.... I have asked about this wrt my younger son.  At this time -- there is no thought that he has attention issues that medication would help.

 

I have talked about this with people who have seen before/after of kids where medication has been tried.  

 

He does not have the signs that kids have had where medication has helped. 

 

The bottom line -- he does not have this kind of attention difficulty (or he does not at this time -- I believe things can change).

 

I have had the conversation of "this is what we are seeing, this is what we are not seeing."

 

They are just not seeing it.  When I am told things that they see that are helped by medication -- I am not seeing that those things are issues for him, either.  

 

It is hard to say this really specifically but it is like -- under what situations is he focusing or not focusing.  When he is not focusing ----- we are seeing that motivations systems are extremely effective, and explicit teaching is extremely effective.  This morning at day camp he was greeted by someone with a "stop, look, hello" card -- and he was perfect.  B/c he knew exactly what to do (and they have worked on it with him).  At other times -- he is really, really iffy on greetings.  But this kind of thing seems to show -- that it is something where what he needs is teaching on "why it is nice to say hello, when and how we say hello, etc."  It is not fundamentally an attention issue.

 

I have been told that for someone similar to him -- they will see that these techniques (and similar) are not as effective as hoped for or very on-and-off in how they work.  But then when the child is on medication -- these techniques work much, much better b/c the child is ready for effective learning.  

 

So this is what I am told.  

 

Does it mean that I am not told my son sometimes will stare at things and sometimes we think this may be "verbal stimming" and sometimes it may be a kind of withdrawal (probably showing he is overwhelmed in some way) etc. etc.?  No, he still does this sometimes.  But I have talked about this and it is not something that people see improve with medication with other kids (and plus ----- other strategies DO work with him -- that we can do in response.... or just choices about how to structure his environment).  From what I have heard -- kids on medication still do this, you don't just increase the dose until you don't see this anymore -- it is just not like that -- it is just decreasing the frequency, making it easier for kids to transition back to "ready to learn," and things like that -- it is not like "it will just go away."  When it is already at a low level for my son -- and he transitions to "ready to learn" when his needs are met -- it is more like "well, often this is a sign from him that something is not going right."  And this makes sense b/c -- changing things makes him do better in this area -- which again is part of why people think "he is not someone who is really unable to pay attention as well as they could if they had medication."  And on top of this -- over the last two years, this kind of behavior has decreased and decreased at home to the point where I very, very rarely see it at home.  I still see it on outings once in a while.  So it really seems like if he is doing this somewhere else -- then it is not just him, it is something about what is going on, and my understanding of medication is that it would not be that way in the same way (though there might also be differences in different places).  

 

There is more to it than this -- a lot is just that I trust people and they explain it to me in some way that makes sense to me.  

 

And also -- his interventions are working, and I think there is an idea that when they are seeing "with these supports and interventions he is doing x,y,z" then they don't say "so let's add medication."  I think it is more when the other supports and interventions are just not effective, and then that is when medication is going to be recommended and when they can see if medication is effective.  

 

My impression is ----- medication will NOT mean -- "now supports and interventions are not necessary b/c the medication is so effective."  It just means "now the supports and interventions are more consistently effective."  And then they are still trying to do all the things to make sure supports are appropriate, learning is appropriate, and all those things.  

 

This is for my son who is considered, right now, mild-to-moderate autistic disorder.  

 

But the thing is -- I am just responding to "does autism ALWAYS include AD(H)D?" and I am going with "no."  I think it does go together all the time, but not always.  And, the main thing I think it comes down to -- what is causing the inattention?  Is the inattention caused by the mechanism that AD(H)D medications can address?  And if it is caused by that same mechanism, then I think "sure, it makes sense that the medication will help."  

 

But if I think (and this is what I currently think) that signs of inattention my son has are not caused by the same mechanisms -- then it does not make sense to think that AD(H)D medication would help him.

 

There is a "motivational" theory for autism that I think fits my son in a lot of ways.  Once he knows "why" he should care, and "how" to care, then all of a sudden -- there he goes, doing those things.  Before he knows those things -- he is very inattentive.  

 

But I think for him - it is a difference between knowing/understanding but not paying attention, vs. not yet knowing/understanding, and so not having a reason to pay attention.  

 

This is what I see with him right now.  But I don't think those two things are mutually exclusive in other children -- I think those are kids where medication helps.  I have definitely heard of kids who take off and make rapid progress after starting medication, too.  But when I talk to parents they do not say things to make me feel like my son would benefit (b/c he does not have the symptoms where they saw improvement, basically). 

 

But I feel like that with some diet/allergy stuff, too.  When my son is very healthy and his bowels are regular, and he has no signs of pain (looking at very exhaustive lists ----- and I feel better about this now b/c he had a tooth problem that was hurting him a little while ago, and so now I know what his pain looks like)....... so I do not have reasons to think that he has allergies.  I have talked to quite a few people about this, mostly parents who have had success with allergy diets, and that is the conclusion I have reached at present.  But I am open to seeing if maybe I was wrong or not noticing something, too.  

[kbutton]

I used to think that a chaotic family of origin explained a whole lot. I eventually realized that I had a blind spot in regard to ADHD and what it really encompasses. I now am pretty convinced that the ADHD is responsible for the chaotic family of origin. Comparing notes to others with similar situations has helped this theory along.

 

WM is weird, if you ask me. Not only is is vulnerable to stress and lots of other things, it varies in how the information is presented. Give my older son numbers, and he's like, "what?' Give him sounds, like playing Simon, and he can go a LONG time without messing up. In fact, he invented a sound-based version of Simon when he was an infant. He would be Simon, and I would have to repeat increasingly long and complicated sounds back to him. I lost every time. As soon as I couldn't repeat the sequence, he'd stop giving me sounds to repeat. Anyway, his daily working memory stinks like rotten tomatoes. He can't hold a thought in his head long enough to let someone else speak for two seconds. It affects social skills really badly as well as schoolwork.

 

My other son has decent but not stellar working memory relative to IQ. His issues look entirely different and so does his ADHD. He can do mental math better, but that's truly about it. He can't follow multi-step directions to save his life. You give him a task, and he can't remember it five seconds later, so he disappears to do something else, often forgetting what he wanted to do himself when he wandered off. We often find him wandering around or in his room completely lost and not sure why he is there.

 

Both have gifted IQs or GAI scores. About the only way their WM functions well in real life is for memory work--if the sequence of words is a Bible verse of something that makes a coherent thought, they both can hold it quite well.

 

He has never received an ADD dx.  Neither dh nor I have ADHD even a tiny bit.  (Well, dh is disorganized and loses things, but I think that is due to never learning these skills.  Chaotic family of origin.)  It has never even been on my radar, and I say that as a person who has worked for years with kids/teens who have ADHD.  Minus the hyperactivity, the rest is just really hard to sort out.  His working memory scores on past testing have been good, better than some other subscores.  These are normed cognitive tests such as the WISC and the Kaufman.  The last testing done by a private practice diagnostician (friend from high school) used a lot of more fine-tuned testing.  His working memory scores on one of the tests done was low.  

 

[Lecka]

Just about my son -- he has gotten more and more purposeful.  Since he has learned how to play with the dog, when he is outside, he is playing with the dog.  He does not wander around the backyard much at all anymore.  It is a couple of minutes where it used to be 30 minutes or an hour, or sometimes even longer.  He likes to turn on the hose and water plants (the same as my other kids).  He can ride around on a big wheel a bit (the same as my other kids).  

 

In his room -- he can find several things to do in his room now, and choose them on his own.  He likes to pick things to do in his room and do them.  Sometimes he wanders around bored, but he can usually be re-directed and not get fixated on one thing that he can't do right then (which he used to spend a lot of time doing).  

 

So this is all improvement he has had.  This is what people are seeing who say they really doubt he would benefit from medication.  

 

But he does not have high scores.  He has global developmental delay, he is delayed in a lot of areas, especially language.  He is not doing anything advanced.  He does not really have splinter skills (he does not have high skills to be splinter skills).  So the bright side is -- his skills are pretty even, and this means some advantages for him (things just being easier and less frustrating for him in some ways -- he has a greater consistency in what he can do b/c he does not have splinter skills, I think there are fewer highs but also less of a roller coaster ride for him, and I think people are nicer to him b/c they never think "he can do this, why can't he do that").  The negative -- he does not have splinter skills that can be leveraged to help him in other ways.  I think the leveraging is the thing that would be really nice about having some really, really strong areas.  He does have relative strengths that are great for leveraging, but they are in the general range of everything else.    

 

 

[Heathermomster]

I've been reading online and there is a diagnosis called executive function disorder.  I almost think that DS is more likely to have that over ADD.  I am currently pursuing strategies that deal with the EFD avenue rather than ADD.  

 

ETA:  Link to some strategies to help strengthen EF.

[texasmama]

I used to think that a chaotic family of origin explained a whole lot. I eventually realized that I had a blind spot in regard to ADHD and what it really encompasses. I now am pretty convinced that the ADHD is responsible for the chaotic family of origin. Comparing notes to others with similar situations has helped this theory along.

By chaotic FOO, I mean dad had an affair and abandoned the family when dh was five, leaving low functioning mom (below average IQ and Borderline Personality D/O) alone with three kids.  Family moved in with grandparents while mom dated and worked odd night jobs and let the grandparents raise the kids. Grandpa was frequently angry and at times, violent. He did not care for dh much.  Grandma largely raised my dh (the youngest child in the family), but he was increasingly ignored in many ways and was raising himself by his teen years.  From what I can gather, no one explicitly taught him anything except how to drive, which Grandma did.  He had to intuit everything else.  He moved schools frequently based on the whims/convenience of the adults.  To this day, he operates as though he is completely alone on an island and has to figure out everything on his own.

 

THAT kind of chaos.

 

I don't *think* ADHD is genetic in his family, as I don't see any evidence of that in any other blood relatives, and MIL's dysfunction is explained by other things.  I do see some ASD on my side in my dad, IMO.  

[Heathermomster]

:grouphug:  :grouphug:  :grouphug:

 

 

[FrogMom5]

Ok, I looked at the SBT website and...I don't know what they are doing.  It looks like you have to get the system through a provider now instead of directly from them.  I can understand them making this change, but it doesn't help you.  Fwiw, the SBT uses video games and dvd movies as vehicles to teach the kids to keep their brains working at certain levels.  That's my lay explanation.

 

There are games like this  http://www.amazon.com/Mattel-T8498-Mindflex-Duel-Game/dp/B004GHNFKK/ref=sr_1_1?ie=UTF8&qid=1435077911&sr=8-1&keywords=ball+levitation+game

 

and this  http://www.amazon.com/Mattel-P2639-Mindflex-Game/dp/B001UEUHCG/ref=pd_sim_21_1?ie=UTF8&refRID=1KC5BRKN4840NFJXKJ1Y

 

maybe this http://www.amazon.com/NeuroSky-MindWave-Mobile-BrainWave-Starter/dp/B00B8BF4EM/ref=pd_sim_21_5?ie=UTF8&refRID=1KC5BRKN4840NFJXKJ1Y

 

Is this a similar concept?  Making something move by concentrating and sending electromagnetic waves to the machine?  Like the lady with CP who flew the plane using only her mind? 

http://internetmedicine.com/2015/03/04/quadriplegic-woman-flies-f-35-with-nothing-but-her-thoughts/

 

Anyway, maybe a game like that, auto racing video games (because you have to focus or you crash) and then one of those dance games where you have to dance like the person/people on the screen.  The whole family could get involved and your son might have fun doing those things with all of you without even realizing he's increasing his EF. 

 

HTH

Denise

 

[kbutton]

By chaotic FOO, I mean dad had an affair and abandoned the family when dh was five, leaving low functioning mom (below average IQ and Borderline Personality D/O) alone with three kids.  Family moved in with grandparents while mom dated and worked odd night jobs and let the grandparents raise the kids. Grandpa was frequently angry and at times, violent. He did not care for dh much.  Grandma largely raised my dh (the youngest child in the family), but he was increasingly ignored in many ways and was raising himself by his teen years.  From what I can gather, no one explicitly taught him anything except how to drive, which Grandma did.  He had to intuit everything else.  He moved schools frequently based on the whims/convenience of the adults.  To this day, he operates as though he is completely alone on an island and has to figure out everything on his own.

 

THAT kind of chaos.

 

I don't *think* ADHD is genetic in his family, as I don't see any evidence of that in any other blood relatives, and MIL's dysfunction is explained by other things.  I do see some ASD on my side in my dad, IMO.  

 

I have seen similar chaos with ADHD, but other diagnoses will def. do that too! I'm sorry things were so rough for him. That's a lot to relearn and work around even without the emotional baggage of it all.

 

We have extended family members who have done similarly. Our extended family tree is rife with examples. DH's family tree has other such stuff too, though thankfully, his immediate family wasn't as chaotic as that (he had a cousin whose family was). There is definitely some BPD with those family members along with ADHD and who knows what all else (pretty sure we have multi-generational spectrum issues on that side as well). 

 

It makes me sad to see families struggle with these issues, but I am hopeful that future generations are seeing improved options for diagnosis and treatment of ALL of these things.

[texasmama]

Ok, I looked at the SBT website and...I don't know what they are doing.  It looks like you have to get the system through a provider now instead of directly from them.  I can understand them making this change, but it doesn't help you.  Fwiw, the SBT uses video games and dvd movies as vehicles to teach the kids to keep their brains working at certain levels.  That's my lay explanation.

 

There are games like this  http://www.amazon.com/Mattel-T8498-Mindflex-Duel-Game/dp/B004GHNFKK/ref=sr_1_1?ie=UTF8&qid=1435077911&sr=8-1&keywords=ball+levitation+game

 

and this  http://www.amazon.com/Mattel-P2639-Mindflex-Game/dp/B001UEUHCG/ref=pd_sim_21_1?ie=UTF8&refRID=1KC5BRKN4840NFJXKJ1Y

 

maybe this http://www.amazon.com/NeuroSky-MindWave-Mobile-BrainWave-Starter/dp/B00B8BF4EM/ref=pd_sim_21_5?ie=UTF8&refRID=1KC5BRKN4840NFJXKJ1Y

 

Is this a similar concept?  Making something move by concentrating and sending electromagnetic waves to the machine?  Like the lady with CP who flew the plane using only her mind? 

http://internetmedicine.com/2015/03/04/quadriplegic-woman-flies-f-35-with-nothing-but-her-thoughts/

 

Anyway, maybe a game like that, auto racing video games (because you have to focus or you crash) and then one of those dance games where you have to dance like the person/people on the screen.  The whole family could get involved and your son might have fun doing those things with all of you without even realizing he's increasing his EF. 

 

HTH

Denise

I did look at the site and realized that I could not get it on my own.  The nearest provider is over an hour away.  I think the video game-based treatment is something I could get ds to buy in to, though.

[Terabith]

Our experience was that Catherine was seen by a developmental pediatrician, back when she was about FOUR, who thought she had autism.  However, when she was given the ADOS, she passed it with flying colors.  Like, not a single point.  We knew at that point that she was struggling with anxiety, but she was FOUR.  The developmental ped had suggested medication, but I was like, "I am not putting my four year old on psychoactive medication."  We were unable to find a play therapist who would see preschoolers.  We muddled through, but by 5.5, the anxiety was seriously life disrupting, and I finally said, "Fine.  We'll try it."  Celexa was a miracle drug for her.  All the autism symptoms went away within two weeks.  It was amazing. 

 

At seven, the neuropsych said that the anxiety was still very high but he also diagnosed her with ADD.  We switched over to a pediatric psychiatrist instead of the developmental pediatrician because she just kept saying, "Autism," without really paying attention to what we were saying.  So our situation was, when we decided to try the ADD meds, we already had a pediatric psychiatrist.  I don't know if a pediatrician would write the script, but the psychiatrist basically just said, "Let me know when/ if you want to try it." 

 

Frankly, the ADD meds didn't really work well for Cat.  I mean, they were great for her processing speed, but the personality change was dramatic and.....disturbing.  They made my off the charts introvert  extroverted and almost manic.  So, we abandoned that tack.  I'm bipolar, so I didn't want to risk triggering that. 

 

So, your experience with "giving it a shot" might be a lot harder, but we were seeing the psychiatrist anyway.  But I would go to the pediatrician and ASK.  Just say, "Look, we have this diagnosis.  Can we do a trial of a medication?"  There are stimulant and non stimulant meds. 

 

There's also the, "Drink a cup of coffee every morning," approach.  That works well for some kids.

[Crimson Wife]

OP, does the child in question have a diagnosis of ASD? If so, I would push to get the Medicaid waiver so that you can take him/her to see a psychiatrist without a co-pay. Medications are covered as well if they're listed on the formulary. The waiver means that your child qualifies for Medicaid on the basis of his/her disability regardless of your family's income. Speech therapy, OT, and ABA are covered as well but I'm not sure about neurofeedback.

[Lecka]

In my state that waiver is not funded enough to actually really cover things.  Partly I think our governor does not accept funds.  I am not sure.  I think it may be that there is a waiting list that is years long. 

 

Also the autism waiver is lumped (after a certain young age) together with intellectual disability or developmental delay, so if you do not have a qualifying developmental delay, then you cannot be on the list for the waiver.

 

So I HOPE that would be an option in OPs location, but I do not think it is available in our state. 

 

We do not have a state mandate for autism coverage, either, so there are kids who are qualifying for speech or OT that is covered but not b/c they have an autism diagnosis. 

 

We have military insurance so I am not really "up" on all of this, it is more what my impression is, but I confident this is not all covered by Medicaid here. 

 

We are known as a "treatment desert" or some term like that, we are the opposite of the states with a good reputation for access to services. 

[Lecka]

I have seen (in the past) a page on Autism Speaks that lets you click on your state and see what kind of coverage and programs there are.  I would try that or ask around and try to find out.

 

If it might be available -- I would totally check all of that out. 

[texasmama]

But he does not actually have the diagnosis of ADHD/ADD.  Never has.  So I'm not even certain he has it or if his EF issues are related to ASD.  Or if it would help.  

 

And at this point he is not willing to take meds so it is kind of a moot point.  lol  In fact, he tells me that he is never willing to take meds for any reason ever.  Now, I think that if he is failing his schoolwork, and I can make a case that meds could help him in a measurable way, he might consider these.

 

This thread has helped me to see that the actual diagnosis is less necessary than simply looking at symptoms which are typically improved by meds and whether these are of most concern for my son.  I will need to ponder this.

 

I also do like and appreciate the science behind neurofeedback.

 

At this point, his anxiety is subclinical and requires no treatment.  Like most ASD kids, normal situations which cause anxiety (having a painful dental procedure, for example) can quickly ramp up, and he lacks the ability to manage this even with my help and support.  In the moment, he dismisses my attempts to calm him.  

 

 

[texasmama]

OP, does the child in question have a diagnosis of ASD? If so, I would push to get the Medicaid waiver so that you can take him/her to see a psychiatrist without a co-pay. Medications are covered as well if they're listed on the formulary. The waiver means that your child qualifies for Medicaid on the basis of his/her disability regardless of your family's income. Speech therapy, OT, and ABA are covered as well but I'm not sure about neurofeedback.

I looked into this at one point, and I do not think there is coverage in TX.  I found the information hard to find.  If a state was not going to cover this, TX would be it.  We did not accept the recent federal funding for Medicaid expansion, for example.  At 14, I do not think he needs ABA and many of the other interventions.  He would benefit from a social skills group and possibly medications, but if he refuses to take them, he cannot benefit.  It would knock me down with surprise if he qualified for a Medicaid waiver and was able to get actual services that are helpful to him at this stage of the game.   I cannot make him take meds or go to social skills groups so I must have his buy in with any intervention.  This is a difficult prospect at this stage.

 

He is also high functioning with his ASD.  He would be considered Aspergers, if that dx still existed.

[PeterPan]

He has never received an ADD dx.  ... Also, it is an appropriate protocol to have an EKG prior to beginning a stimulant, and I would want one. 

Might be standard in TX but it isn't in Ohio.

 

You do realize what a contradiction it is, that you're taking someone who had an ability to hyperfocus and then saying hmm, on this test I did/did not get inattention symptoms.  Three psychs, three takes on my kid, even on the ADHD question.  The tests they used varied and his engagement with them varied.  On one of the tests he seemed to really like it (on computer, blah blah), so he attended really well but had terribly high impulsivity.  That's what you've described in your ds, and I think it's a common presentation.  The ps was blown away because he could sit and interact for 45 minutes, not at all what you expect with typical ADHD, especially ADHD-inattentive the way the first (idiot) psych labeled him.  What a crock.

 

Yes, neurofeedback let's you bust through the labels and start focusing on what's actually going on.  It can calm down the anxiety *and* the attention/impulsivity symptoms.  What I'm reading is that the anxiety brain patterns are totally inverse of the only inattention brain patterns.  They use beta and gamma and names I forget, but basically the anxiety brain is ON all the time and the inattentive brain is to filled with sleepy waves.  Neither is healthful, and actually the ON all the time is the more unhealthy of the two.  We'll see how it goes, but like I've said my ds and dd are total opposites, clearly, brainwise, and both will get neurofeedback.  We'll see what happens.  

 

You seem like you have a lot of teen, flexibility, advocacy issues.  Might be another way to work on it, just working on flexibility or the value of health as a whole and then presenting these options/ideas later.  

[kbutton]

I looked into this at one point, and I do not think there is coverage in TX.  I found the information hard to find.  If a state was not going to cover this, TX would be it.  We did not accept the recent federal funding for Medicaid expansion, for example.  At 14, I do not think he needs ABA and many of the other interventions.  He would benefit from a social skills group and possibly medications, but if he refuses to take them, he cannot benefit.  It would knock me down with surprise if he qualified for a Medicaid waiver and was able to get actual services that are helpful to him at this stage of the game.   I cannot make him take meds or go to social skills groups so I must have his buy in with any intervention.  This is a difficult prospect at this stage.

 

He is also high functioning with his ASD.  He would be considered Aspergers, if that dx still existed.

 

I think Medicaid waivers vary by state, but I am pretty sure they are a matrix of diagnosis/disability, IQ, and skill/self-care. Where we are, I think it's decided on a state/county basis, and of course, you can qualify and be on a waiting list for years also. So, it may be worth a call. Here, they do assessments that involve things like showering, counting change, etc., and if your kid gets A's in school, but can't shower without a checklist (that is, actually get clean and do what they are supposed to in the shower), or they don't take care of their teeth, it can tip the balance. You do have to explain what shower in dependently means though, in order to have the assessment be accurate, as some friends of ours have found. :-)

[texasmama]

Might be standard in TX but it isn't in Ohio.

 

You do realize what a contradiction it is, that you're taking someone who had an ability to hyperfocus and then saying hmm, on this test I did/did not get inattention symptoms.  Three psychs, three takes on my kid, even on the ADHD question.  The tests they used varied and his engagement with them varied.  On one of the tests he seemed to really like it (on computer, blah blah), so he attended really well but had terribly high impulsivity.  That's what you've described in your ds, and I think it's a common presentation.  The ps was blown away because he could sit and interact for 45 minutes, not at all what you expect with typical ADHD, especially ADHD-inattentive the way the first (idiot) psych labeled him.  What a crock.

 

Yes, neurofeedback let's you bust through the labels and start focusing on what's actually going on.  It can calm down the anxiety *and* the attention/impulsivity symptoms.  What I'm reading is that the anxiety brain patterns are totally inverse of the only inattention brain patterns.  They use beta and gamma and names I forget, but basically the anxiety brain is ON all the time and the inattentive brain is to filled with sleepy waves.  Neither is healthful, and actually the ON all the time is the more unhealthy of the two.  We'll see how it goes, but like I've said my ds and dd are total opposites, clearly, brainwise, and both will get neurofeedback.  We'll see what happens.  

 

You seem like you have a lot of teen, flexibility, advocacy issues.  Might be another way to work on it, just working on flexibility or the value of health as a whole and then presenting these options/ideas later.  

An EKG prior to beginning stimulant meds is an appropriate medical protocol and has been for about ten (ish) years, after a small but significant risk of sudden death was discovered in kids with an underlying heart defect which was unknown prior to beginning stimulants.  That doesn't mean that all docs do an EKG, by any means, though.  The risk is small, but obviously, sudden death is an extreme risk, thus the EKG protocol.

 

I think our best bet is likely to forget the labels and focus on the behaviors/functioning and how to improve it.  I've planted the meds seed for later if he needs to pull it out and look at it.

[wapiti]

An EKG prior to beginning stimulant meds is an appropriate medical protocol and has been for about ten (ish) years, after a small but significant risk of sudden death was discovered in kids with an underlying heart defect which was unknown prior to beginning stimulants.  That doesn't mean that all docs do an EKG, by any means, though.  The risk is small, but obviously, sudden death is an extreme risk, thus the EKG protocol.

 

I am popping in to say that, randomly, my ds12 has such a defect and isn't allowed to have stimulants, not even caffeine.

[texasmama]

I am popping in to say that, randomly, my ds12 has such a defect and isn't allowed to have stimulants, not even caffeine.

I don't want to like this post so I will just say that your son and kids like him are the reason an EKG is now the best practice protocol.   I think the recommendation dates further back than I recall, but I have gotten older and fuzzy on time.  I know this happened during my time in mental health practice.

 

My niece was put on stimulant meds by a family doc without an EKG some years back, and I recall being bothered by this and telling my SIL she should really have one.  

[PeterPan]

You know, I think I have my alphabet soup mixed up.  EKG is *heart* not brain?  Ahh.

[texasmama]

You know, I think I have my alphabet soup mixed up. EKG is *heart* not brain? Ahh.

Yep. EEG is brain. :)

[PeterPan]

[Crimson Wife]

It occured to me that if somebody really wants her child to have an EKG but doesn't have the budget to pay for the OOP costs at a cardiology clinic, it would be smart to check with local colleges to see if there are any EKG tech training programs. They might be able to do a low- or even no-cost EKG by their students with supervision from the instructor. It might not be the quickest experience but it would cost a LOT less.

[PeterPan]

And not to be dumb, but what kid in our country has not been exposed to caffeine?  You're saying there's a slight chance of having some kind of heritable or genetic reaction to stimulants?  For my generation, pop was ubiquitous, with everybody drinking it at family gatherings.  Now, less so, but for a couple decades there kids had plenty of caffeine exposure, mercy.  Would that alone be a screen for it?  3 pops and you pass?

 

Also, I thought the point of the ADHD med stimulants was that they stimulate the front lobe and NOT overall organ function (adrenals, etc.).  Is that not the case?  Why are we needing to check the heart if the meds only stimulate the frontal lobe? Caffeine gives you an overall buzz and is addictive.  I thought (assumed) the ADHD meds were considered non-addictive.  Is that not the case either?

 

In other words, I'm revealing a glaring gap in my knowledge of what ADHD meds actually DO and how they differ from caffeine or other stimulants.

[Crimson Wife]

Our pediatric psychiatrist required an EKG before starting my little one on Methylin because there have been documented cases where stimulants can cause cardiac side effects. It's similar to how people with heart disease need to avoid Sudafed and instead take a different decongestant like Coricidin. They are all chemically similar to amphetamines and while they're safe for most people, you want the EKG to make sure that your child is not at higher risk of side effects.

[wapiti]

FWIW I was under the impression that regular EKGs are relatively inexpensive (like $50-150, though I haven't looked at a bill for one in a long time).  Cost would depend on where it's done.  A technician or nurse runs the EKG and it only takes a few minutes.  The data can be sent electronically to cardiology for review.

 

Our ped does not do EKGs in-office and sends us to the local Children's hospital branch location if we aren't headed to a cardiology appt.  Anything at that place is expensive.  *However* I noticed on a website that our local combo urgent care/family practice up the street, in the supermarket shopping center, can run EKGs in-office and I'd guess that would be far cheaper than our children's hospital.  This is the type of family practice where I could call and actually find out a price if I wanted.

 

Re: the meds and what they do, I was under the impression that the stimulant ones do stimulate more than the frontal lobe, e.g. this is why some kids have appetite and weight loss issues on stimulants.  We are not exactly on this road so I'm not familiar with the particulars, however.  (eta, maybe you're thinking of the non-stimulant adhd meds?)

 

As far as rarity of heart conditions, I don't know the odds, though it seems to me that the idea is similar to the controversy over whether school athletes should get EKGs before participating in sports and at a minimum are required to have physicals.  My ds's defects include those that are typically the cause when teenage athletes suddenly drop dead on the athletic field.

 

Eta, for an affected kid like my ds12, the risk of sudden cardiac death is somewhere in the low single-digit percents on an annual basis, as in, say there's a 1-2% chance of death *this year*.  That risk goes up during teens/twenties.  Anything that causes a significant increase in heart rate will increase the chances of an abnormal rhythm that can lead to SCD.  These things include even adrenaline, like caffeine, though much more difficult to avoid; we control what we can.  Stimulants are more dangerous when added to an already-raised heart rate as in competitive sports.  (Ds has probably only had one or two sodas with caffeine in his life - at this point the only soda he drinks is Sprite and I don't buy soda for home ever anyway.)

 

Eta, just to be clear, an EKG will not rule out every possible heart condition by which a stimulant could lead to an abnormal rhythm and SCD.  It will only rule out some.  My ds's hypertrophic cardiomyopathy, for example, could only be detected by echo.  His abnormal EKG (he has a significant delta wave, similar to WPW syndrome) is a separate issue though thought to be even worse in the presence of HCM.

[texasmama]

I don't have the bandwidth currently to address your stimulant/caffeine/heart questions, OhE, but taking stimulants daily is a different strain on the heart than drinking a soda or two.

 

Re: an EKG, some family doc practices have a machine.  I believe that my dh had an EKG as a matter of course during a check up from his family doctor in the past couple of years.  Getting an EKG would be one of the minor barriers to my son getting meds, if needed.  The largest one would be that he is currently not the least bit open to taking them.  Another is that I am unclear that they would be helpful.  Lots of barriers.  :)  But I don't think they need to be leapt at the present, just the seed planted in case this comes up again.  Likes most ASD teens, my son does best when things are presented multiple times over a period of time.

 

But I am just processing and talking and looking for thoughts and ideas and different ways of looking at this situation, and I get that here.  Ya'll are the best for that.  And I want to look into video game-based neurofeedback.  I could probably get him on board with that.

[texasmama]

We were all posting at the same time.  :)