ADHD - what beyond meds?

[eternallytired]

My ODS (7.5) was diagnosed with ADHD a little over a year ago.  We had long suspected that he had it (DH does--diagnosed in first grade), but we had been able to handle it until Fall '14.  At that point, his focus was nil and he was having a hard time transitioning and stopping undesirable behaviors; consequently he was missing social cues, stagnating academically, and getting yelled at a lot.  In Spring 2015 I finally consented to bring him in and talk to the pedi, who referred us to a pediatric neurologist.

 

DH was on Ritalin from first grade until midway through high school, and he had a great experience--the meds helped him to focus so he was able to succeed in school, and as he got older his coping mechanisms made the meds unnecessary.  We hoped DS would have the same experience.

 

We tried DS on two different stimulants (Metadate and Adderall).  While each of them worked well initially, within about a month they seemed less effective.  After he returned to pre-medication behavior, we called the doc, who increased the dosage.  When we increased the dosage, the meds regained effectiveness in controlling his ADHD, but on each of the stimulants he turned into a weepy mess--not worth the meds.

 

**On a side note, when the meds worked, DS absolutely soared.  He was able to focus on his academics and on things he enjoyed, and he really rocketed ahead in many areas, wasn't constantly in trouble, had more awareness of those around him and did a little more interacting with peers.  It was awesome to watch.

 

This spring the doc recommended trying a non-stimulant since we didn't like the emotional side-effects of the stimulants.  After acting like a zoned-out zombie for the first couple days, DS's body adjusted to the Intuniv and it worked well...for a couple months.  Now for a couple months he's been very frustrating again, but I'm trying to hold out lest we run out of medical options before this kid turns 10.  I've tried Omega-3s (Nordic Naturals were recommended to me--tried them before trying meds and now in addition to the meds) but had limited--if any--success.

 

This week we had an appt with his neuro.  When I reported that the meds had once again given out, he said that we can increase his dosage, but there aren't many other medications left to try if that proves ineffective.  When I mentioned other options and said I'd tried Omega-3, he shrugged and said he didn't think it would do any good, but it wouldn't be harmful.  I guess I was hoping he'd give me additional suggestions beyond just "try more meds; you're running out of options."

 

Have you had a kid for whom meds only seem to help briefly?  What can you do beyond the usual medication route?  How do you help your child develop the brakes/filters/awareness they need?  What's helped your child to thrive?

[PeterPan]

There's research coming out now about the use of behavioral modification.  

 

Treatment Sequencing for Childhood ADHD: A Multiple-Randomization Study of Adaptive Medication and Behavioral Interventions. - PubMed - NCBI

[kirstenhill]

My DS7 received an ADHD diagnosis and started Strattera about three months ago, and so far so good for him.  It's a non-stimulant.   He was doing pretty well academically (I had already figured out how to help him stay focused with me, one on one), but socially/behaviorally he was a mess before we started with meds and therapy.

 

We did about two months of weekly CBT sessions with a therapist that were helpful for him in learning better responses to things that anger/frustrate him, and a six week long class that covered topics from the SuperFlex curriculum and other self-regulation strategies.  My DH "shadowed" DS7 to all his church and co-op classes for about three months so we could catch behavior problems quickly.  (It was a long stretch of weeks, but it was needed if he wanted to stay in those classes, which he did). 

 

He is really doing a lot better and finished Science Museum Camp today with no bad behavior reports all week.  That was a big win for us!  On the other hand, he wanted to try a fun tennis class at the neighborhood park that he could do along with DS9.  They teach tennis skills through fun/silly games. That was a total "fail" because it brought out all the things that he still struggles with (losing in competitive games, not being able to "go first" in the games, not being chosen as "it", not being on the team he wanted to be on, etc).   He was out after one day -- partly because he didn't like it, and mostly because the 16 year old coaches of the program told me they didn't know how to handle DS7s behavior when he didn't get his way (and it wasn't a time/place/situation where DH or I could be fully devoted to trying to work with DS7's behavior right there during class).  Fair enough.    So the things we've done so far have improved day to day life and allowed DS7 to be in some classroom situations with no behavior problems, even though it is still a work in progress in other areas.  We're on a summer break from therapy and the Super Flex class, and we aren't quite sure where we're going with it in the fall.  I do know we are not going to do a co-op with a gym class this year for him.  :-) 

[ondreeuh]

How long did you try the increased dosage before cutting back? It can take a couple weeks or so for side effects to wear off.

 

So you've tried Metadate and Adderall - and Intuniv, right? There are a LOT more options. Both of my boys take Concerta and it has worked the best out of the ones we've tried (Focalin, Vyvanse, Adderall). Concerta is a stimulant like the others, but is the most effective with the fewest side effects for their bodies. Don't write off all stimulants just because you tried two (and I'm not clear if either of those would have worked well eventually if side effects had worn off).

 

Even if some emotional fragility remains, you may find that the benefits are worth it.  We are pretty careful to keep things calm and easy in the evenings because those can be tough here - though it's mostly just a matter of meds wearing off and none of us coping well with that.

[eternallytired]

Thanks, all.  I'll have to check out that link about behavior therapy.  Thankfully (I think because he is super introverted) it's his AD that shines in group settings--and teachers don't mind a Sunday School kid who sits quietly, not interacting, or a choir student who doesn't participate except when everyone starts singing the songs.

 

We had tried the stimulant medications for one month before giving up on them due to the emotional side effects.  That said, right now he's near emotional wreck state because he keeps getting in trouble and can't handle transitions, so I don't know that this is winning for him, either.  Sigh.

[PeterPan]

Your diagnosis was from a ped or psych?

[MomatHWTK]

On the home front, we employ mindfulness and cognitive behavioral therapy methods. 

[Heathermomster]

Has he been evaluated by an OT yet?  You want an eval that looks at developmental motor (prim reflexes), visual perception, vestibular, static/dynamic balance, visual perception, and core/pincer strength.  Prim reflexes are a biggie.  The OT can also determine whether your child needs a sensory eval.  An OT can provide interactive metronome therapy (IM), which can be helpful for ADHD.  There are also mindfulness exercises that take about 5-8 minutes per day.  If you have have Amazon Prime, go into the Prime Music and search mindfulness for children.  

Edited June 25, 2016 by Heathermomster

[eternallytired]

Your diagnosis was from a ped or psych?

The diagnosis came from a pediatric neurologist.  (Apparently different parts of the country prefer different doctor types for diagnosing/treating ADHD, according to what I've read.)  I was a little taken aback at how...easy, I guess...the diagnosis was.  We were told to fill out a survey and take it to the doc.  He glanced at it, asked a few questions, did an EEG to check for seizures, had DS squeeze his fingers/walk heel-toe/follow a light with his eyes...and that was it.  Diagnosis made, prescription written.  It felt like a bit of a letdown.

 

 

 

We've actually spent quite a large part of our spring working through Mind Up, since I was hoping mindfulness would help everyone with various issues.  I should get us back into the habit of taking time for that daily again.  And now I'm off to research primary reflexes and cognitive behavior therapy.  We went to fill the new prescription today and it was $123 for a month of meds. Considering the cost and how quickly he's building up immunity, DH and I are thinking of weaning him off and seeing what we can do on our own, so I need all the resources I can find.

 

[kbutton]

There are some kids on multiple meds at once (even more than one stimulant, I believe). I'm sure that's kind of a frightening idea, but it does happen. 

[freelylearned]

Have you looked at the Feingold Diet? The Feingold diet rules out food sensitivities as the root of behavior issues. It is hard to make the transition at first, but I put my family on it and found out a few years ago that my son wasn't ADHD, he was extremely sensitive to ingesting anything made out of petroleum (artificial food dyes and most preservatives). I started reading labels and shopping at Trader Joe's and Costco exclusively and found I could get everything he could safely eat, right down to lollipops and mac n cheese. It's a little pricey to get the start up materials for Feingold, but if you can avoid extra meds, the cost is totally worth it. After keeping dyes and preservatives out of my son's diet for a few years, it has finally gotten easier, but accidents happen. At VBS, my son ate a rice krispy treat, not realizing they were made with marshmallows (Blue dye 1) and it was a ROUGH couple of days following the Rice Krispy Treat Incident. Oh well. (and if anyone reads this and thinks it was the sugar, let me tell you that the same thing happens with Doritos. Besides, sugar burns off in a couple of hours. It takes DAYS to process food dye.)

 

PS Did you know that in the European Union, foods with artificial dyes and preservatives like BHT and TBHQ are required to have warning labels on the front of the package warning that the product contains ingredients that cause Attention deficit and behavior problems? The bill to have a similar warning on US packages was heavily fought by lobbyists. Eventually the bill was shot down even though there was sufficient scientific evidence that there was a link between petroleum based food products and behavior. We just weren't meant to eat gas.

[PeterPan]

My dd is quite ADHD in spite of organic, Trader Joes, etc. etc.  We've eaten that way for 15 years, lol.  My ds is even more ADHD, and he even had that all through pregnancy.

 

The more interesting question, since he's not reacting typically to meds, is what got missed and what would turn up on a psych eval.

 

I'm all for diet changes and healthy eating, btw.  The book ADHD Does Not Exist goes into a bunch of things like that that help some people.  

 

If you actually want to play with food, you can google food sources of dopamine.  The nutritionist had us start eating pumpkin seeds, and those can bump dopamine levels I think.  So you can get mild medicinal effect by combining things, yes.

[nature girl]

My dd is quite ADHD in spite of organic, Trader Joes, etc. etc.  We've eaten that way for 15 years, lol.  My ds is even more ADHD, and he even had that all through pregnancy.

 

The more interesting question, since he's not reacting typically to meds, is what got missed and what would turn up on a psych eval.

 

I'm all for diet changes and healthy eating, btw.  The book ADHD Does Not Exist goes into a bunch of things like that that help some people.  

 

If you actually want to play with food, you can google food sources of dopamine.  The nutritionist had us start eating pumpkin seeds, and those can bump dopamine levels I think.  So you can get mild medicinal effect by combining things, yes.

 

We also eat almost all organic, very few processed foods, and I haven't found that dyes make even the slightest difference. There's a small percentage of kids who are affected by dyes, but I believe it's under 5% (and I think when they have the offending food, their reaction is pretty severe, not just the typical ADHD hyperactivity, so you'd probably be able to tell.) So like OhE said, it's definitely worth trying to eliminate processed foods (they're not good for us anyway) but there probably won't be a huge change.

 

As for OhE's comment on not reacting typically, unfortunately what you've seen isn't all that uncommon. Up to 20% of kids don't react to meds at all, and some of the others need very high doses in order to get a noticeable effect. I think my DD will be one of those people...We're seeing a small effect on her current dose (10mg Focalin XR) but it's nothing to really write home about. At this point I don't think I want to try a higher dose, so I'm trying to decide whether the little we're seeing is worth subjecting her body to the meds. It does take the edge off, but schooling is not much easier.

 

Were you using an extended release med? The side effects are supposed to be minimized with XR.

 

Before meds, we tried pretty much everything under the sun, including Omega 3's (which we'll continue indefinitely, even though I don't see it helping much), magnesium (in a tablet called "Attentive Child" which also contains other stuff), PS100 (I don't think it does much, but we're continuing for now), Focus Factor (did nothing), DMG, essential oils (did nothing), and a bunch of other stuff we ditched even before finishing the bottle because they didn't help at all. (We even tried catnip tea. That is what desperation will do to you...) I really think most of the supplements that are reviewed highly by desperate parents get those reviews because of the placebo effect. (Or maybe they actually DO work for some, I don't know, but we could have taken a vacation on the money we wasted.) One thing that I think has worked for us is Suntheanine, which is actually a first line treatment for ADHD in Japan. We use a half tablet now to help with rebound in the afternoons. Many people find help with caffeine, so if you can stomach the idea it's worth a try. We tried a mini caffeine pill for awhile, but didn't get much effect, it apparently doesn't work for all. I then started giving DD green tea (with ginseng, which is also supposed to help), and I think that actually did make a bit of difference. Green tea has both caffeine--the right amount for younger children--and the theanine. With all that, DD was still reasonably hyperactive, and had (and still has even with meds) a hard time sitting for extended periods of time for lessons.

 

Exercise helps, a brisk walk or bike ride every morning. A high-protein breakfast (high protein in general all day), low sugar throughout the day, because fluctuating blood sugar really can make a difference. And I agree with mindfulness as a useful tool, I think even with meds it's an important way to help kids catch themselves before they lose control. Social skills training can also help with the social aspects...We plan to continue for awhile, since the meds don't seem to be helping much socially. (She's getting much better though, as she matures.)

 

Wishing you the very best. :grouphug: I know how helpless this all can make you feel. Just know that as they get older, some things WILL get better, with or without meds.

Edited June 27, 2016 by Anna's Mom

[PeterPan]

AM, are you sure about that stat?  I'm seeing (googlefu here) 60% of kids with ADHD are on meds and the use is going up.  Our ped told us 70 or 80% (I forget) of kids could go on ANY med and be fine.  I've never seen anything saying 80% of kids with ADHD see no improvement with meds.

 

 Treating ADHD: When Stimulant Medications Don't Work - ADHD

 

Here's an article saying they don't work in 10-20% of cases.  The article also points out the thing we're saying, that in situations where the meds AREN'T working, more evals need to be done to see what is being missed, that the diagnosis may not be correct or complete.

Edited June 26, 2016 by OhElizabeth

[PeterPan]

AM, did they check your dd for retained reflexes?  There are some specific reflexes that, when retained, make sitting very uncomfortable. 

[Heathermomster]

The diagnosis came from a pediatric neurologist.  (Apparently different parts of the country prefer different doctor types for diagnosing/treating ADHD, according to what I've read.)  I was a little taken aback at how...easy, I guess...the diagnosis was.  We were told to fill out a survey and take it to the doc.  He glanced at it, asked a few questions, did an EEG to check for seizures, had DS squeeze his fingers/walk heel-toe/follow a light with his eyes...and that was it.  Diagnosis made, prescription written.  It felt like a bit of a letdown.

 

 

 

We've actually spent quite a large part of our spring working through Mind Up, since I was hoping mindfulness would help everyone with various issues.  I should get us back into the habit of taking time for that daily again.  And now I'm off to research primary reflexes and cognitive behavior therapy.  We went to fill the new prescription today and it was $123 for a month of meds. Considering the cost and how quickly he's building up immunity, DH and I are thinking of weaning him off and seeing what we can do on our own, so I need all the resources I can find.

 

DS was diagnosed ADHD Inattentive based upon the questionnaire, WISC-IV scores, and the NEPSY-II.  A good child psych will have access to a TOVA which can be run to test attention as well.  Ideally, a TOVA or something similar is run prior to meds for a baseline and then run again while the individual is taking the meds.  It's nice that your doc ran the EEG and asked a few questions; however, that is not enough.  

 

IDK whether OhE linked the study yet, but there is research that supports parents working with a therapist prior to administering the meds to the children.  With older students and adults, CBT work first and followed up with medication, provide the best outcomes.  DS and I go to the CBT together.  I take the notes while DS listens.

 

Here's a link for checking reflexes.  DS had the spinal galant, ATNR, and the STNR retained, and they were integrated by working with an OT for 6-7 weeks and a ped PT for about 6 weeks.  DS spent 6 or so weeks and completed IM therapy.  IM is supposedly very good for hyperactivity.  About 50% of kiddos with motor issues will be diagnosed ADHD.  Movement with cross body type exercises are very important with these kids. My son purposefully uses the elliptical about 15 min per day.

Edited June 27, 2016 by Heathermomster

[nature girl]

AM, are you sure about that stat?  I'm seeing (googlefu here) 60% of kids with ADHD are on meds and the use is going up.  Our ped told us 70 or 80% (I forget) of kids could go on ANY med and be fine.  I've never seen anything saying 80% of kids with ADHD see no improvement with meds.

 

Sorry! I meant only 80% DO find meds that work, without side effects significant enough that they can't continue. Up to 20% either don't find them effective, or find the side effects too severe to continue...

[nature girl]

And I think the OP was saying the meds did work beautifully, but that they became less effective, and raising the dose caused too many side effects. So I wouldn't necessarily be looking for a comorbid issue there, only if she hadn't seen any effect at all.

 

The OT didn't find retained reflexes (and Anna's always been able to sit for a LONG long time while I read to her, or while she narrates one of her stories for me to scribe...) She used to wiggle during it, but has been able to stay pretty still on meds. So I don't think discomfort is the issue, just her need to move.

 

(Math is still a struggle most days...Yesterday she sat for about a half hour with me, which was amazing, but this morning (we just finished) I couldn't get her to focus for the life of me. She wasn't moving all over like she used to when frustrated, but kept whining and protesting about it. So the meds haven't been a miracle for us.)

[PeterPan]

AM, I wonder what affect the theanine could be having on how the meds work.  

 

Heather, I don't know if the one I linked is a new study or the same one we talked about before.  Maybe it was new?  This was very new, and it specifically suggests behavioral therapies, not even just CBT.  I think before when we discussed it the articles were more vague?  I don't remember.  A behaviorist approach is really interesting to me with the breadth of what they can do.  It's not as nice as just having a CBT session, but it's a lot more focused on understanding than the Pavlov's dog kind of impressions I had gotten from reading online.  There's some serious tough love to it!  But really, when you think about it, these kids more severe ADHD RESPOND well to high structure.  They'll go into the military, etc., etc., and it's all about the structure.  

 

And yes, that's an exceptionally well-taken point about having something like a Quotient or TOVA to baseline and compare to changes.  We've only done one Quotient so far, but I find it interesting just because it uses so many more sensors and methods of analyzing than the TOVA.  I really thought the Quotient on dd wouldn't show much, and yet it was able to quantify and categorize things on her in a fascinating way.  

 

As for how the meds are working for the op, I'm really unclear.  EVERYONE gets a performance bump from stimulants.  It's not like having academics improve validates an ADHD diagnosis.  That has been debunked.  To me what's curious is the additional, negative side effects they're having on every medication they try.  That's when you ask what else is going on.  With no psych eval, they don't know what got missed.

[nature girl]

AM, I wonder what affect the theanine could be having on how the meds work. 

 

I only give it to her around 4, when the meds are about to wear off, and haven't been giving it every day. So I don't think it could be affecting her during the morning and early afternoon?

 

As for the effect the stims had on the OP's son, it seems like they helped not only with attention but also with behavior/impulsivity. So I'm not convinced building tolerance to meds is a sign of anything else going on. (Increased irritability/weepiness as you increase the dosage of meds is very common, and it sounds like that's what she's seeing.) So maybe there's something else, and it's always worth getting an eval, but I wouldn't say that anything she's said points to anything but ADHD.

 

I'm so curious about Quotient, it really feels like the best way to fine-tune meds. I wish I could find someone who offered the test who didn't charge $300-$450 per appointment...

[Ottakee]

We use Dexedrine which is an older med but doesn't have the mood issues thatany other stimulants do.

[eternallytired]

Wow, you-all have a lot of info here. 

 

I had looked into the Feingold diet, but hadn't taken the plunge because of the mixed reviews, as well as the fact that we are on a tight budget.  (Though at the rate the cost of meds is increasing...)  We probably do more gluten than is ideal (Goldfish and pretzels for snacks, crackers or sandwiches with lunch, noodle- or rice-based dishes for dinner often because they're filling and cheap) but otherwise we do very little in the way of sugary food and eat several servings of fruits and veggies daily.  Maybe I'll have to take another look at Feingold or at least see what I can do to further reduce our processed food intake (and up our dopamine, too).

 

In addition, I try to ensure he gets lots of exercise, otherwise he takes several hours to fall asleep at night.  On weekdays he spends 1-2 hours a day swimming; yesterday he did an hour or more of yardwork and today he biked 7 miles with DH (in 90 degree heat).  Unfortunately (?), the exercise succeeds at tiring him out, which seems to make him more emotional and less able to control himself.

 

As far as the meds, I wouldn't say that he necessarily performed better, just MORE.  He's always been good at math, but when he didn't spend as much time staring at his pencil and re-numbering his problems various ways, he was proud of how much he could do and how well.  He's got natural talent with the guitar, but when he's not running at the mouth constantly or leaping up to race in circles after every song, he listens to critique and spends more of his practice time actually practicing and thus makes faster progress.  Does that make sense?  And yes, he is on the XR meds.

 

Thanks for all the links and recommendations, all.  I've got about a zillion tabs open and am trying to research everything at once!

[PeterPan]

Yeah, there's some room to work on diet there, lol.  Bananas are cheap and make good snacks, as do apples.  For filling dinners, quinoia, beans, lentils, all sorts of things are cheap but healthier.  Brown rice can be good for lunch when stir fried with veges.  We eat our starches (grains and starchy veges) at lunch, then we eat proteins and low starch veges at dinner (salad, legumes, wild rice, quinoia).

[Kat w]

Vyvanse is a different class of med. We love it. I would recommend talking with your doc about it.

It doesn't have those types of aide affects Ritalin n adderal do.

We take intuniv at night. He was prescribed the intuniv for seizures but helps with the "come down" from the vyvanse , which BTW...wasn't bad.

Vyvanse has been a life saver for ua. I highly recommend talking with your doc about it .

I'm sure others have said too, but we started zones of regulation. Color coded for different behavior and lends the child to manage his own behavior. That has been a huge help.

And the good ole bribery/reward system .

Good luck

[Kat w]

Incidentally, the vyvanse has helped him enough to allow him to manage his own behavior .

[Elizabeth 2]

hugs,momma. This is the hard part.  All the unknowns in the beginning of what can or will help your kiddo to do the best he can. This is a bit verbose as I'm a passionate advocate for alternatives to conventional medicine and helping to treat the cause.  DS10 has severe ADHD, to the point it is dangerous to him and to others if not treated as aggressively as we have.

 

Our therapies we have used, at one time or another:

Chiropractic 

Light spectrum removal (wear special colored glasses to stimulate certain hormones)

Essential Oils

Physical Therapy

Occupational Therapy

Cognitive Behavioral Therapy

Conventional Stimulants

Dietary Restrictions

Dietary Supplements

Executive Function development

 

Honestly, get more evaluations.  Occupational can help to find it there are sensory issues.  Social/Emotional will help to find how far behind dc is and what areas need work.  These will help you set goals with therapists, IEP accommodation setup if PS is in the future, and how to manage at home.  We will be having them done in the next couple months as DS10 will be entering puberty, and we need to know how our programs have helped so far, and what we need to focus on again in the coming years.  

 

When DS was 3, our chiropractor shared research that showed almost all people with ADHD, with or without biological comorbidities, have low progesterone. Often seen as morning sickness, PMS, PCOS, or other reproductive issues in either parent, it is genetically passed to the child.  This affects the blood sugar management mechanisms, triggering the adrenal glands to maintain blood sugars levels along with the fight or flight response.  Yes.  These kids really do get 'hangry.'  So anything that helps maintain consistent blood glucose and hormone levels will help these little guys and girls.  Hard, regular physical exercise and a no-refined (preferably no added) sugar, high protein, high 'healthy' fats diet will assist any other treatment options.  It was DS8 diagnosis of GI issues leading to a six month low FODMAP diet that led to finding that is very helpful to DS10.  We went off the diet at the prescribed time and DS10 had more problems than DS8 did, so it's now our family's option.

 

Diet makes a big issue in removing what is causing problems, but adding in what the brain needs can make a big difference too.  I read a book about parents using Advocare's Spark product (not an affiliate) to help their children.  The product contains essential amino acids that are needed for the brain to process properly.  Specifically, GABA, L-Tyrosine, and Choline.  These neurotransmitters are often what are missing or are blocked by specific foods in the diet, thus the reason some specific food restrictions help (outside of allergies).  

 

The book Disconnected Kids (with the author's followup, Reconnected Kids) is a huge help in understanding the physiological differences, why certain therapies work, and specific techniques that parents can do at home. 

 

Keep up the research.  You'll find a combination of therapies and treatments that work.  What you find now may not work, but bookmark it.  It may be just what is needed later.  

[Kat w]

Diet is huge for us too.

 

I think I always forget about that.

 

And don't undestimate breads and pastas.

They break down as glucose (sugar)

 

My lil guy will , wow, on sugars.

 

Lean meats, lots of fish (salmaon type with the omeagas) brown rice instead if white .

Vegetables.

 

Even fruits and their natural sugars send him through the roof.

 

Yougarts, nuts ( make sure no allergy tgo)

And dyes, like red dye , yellow dye. I try to avoid.

 

I forget to include diet modification when I comment . it's a vital part for us.

Edited July 24, 2016 by Kat w