Monday, March 11, 2013

Matthew and ADHD

Ah, my Crazy Eights child.  Where can I start?  Matthew has always been a busy little boy.  From the minute we first met him in the Chiang Mai airport, he was always his own man.  Marching to his own band.  A few of the characteristics that come to mind especially in retrospect are hands on, busy, wild, climb the walls, constant, impulsive, hyper, over stimulated, self stimulating, repetitive, noisy, high energy, 'naughty,' emotional, cute, hilarious, precocious, distractible, frustrating, scattered, and just plain MORE.  His energy was more, his activity was more, his emotions were stronger, his noise was wilder, his personality was just BIG.

Big is awesome and beautiful.  But big can become cumbersome and interfere with normal functioning and  daily life and learning and relationships and even just plain old safety to a degree that tips the scales into worrisome.  My relatives and close friends who saw us in action frequently commented that we had our hands full.  They would smile at him, knowingly glance at us, and say something to the effect of Good luck with that one!

At first I figured he was a 'spirited' child.  He is, but he's actually more than that.  Then I figured he was spirited but also had communication problems, which were holding him back and making him frustrated and overtly physical.  He was, but it was more than that, too.  His teachers identified him early as needing extra help with academics.  Without being pushy, they gave him tons of support.  Reading Recovery, learning assistance, speech therapy, one on one with the teachers, multiple learning styles, multiple sensory tools, adapted lesson plans; the kid had every intervention.  And at the beginning of grade three?  He still struggled with the alphabet.

Living with Matthew's energy and the overwhelming constantcy of his MORE was normal to us, and so we didn't see him as hyper.  We saw him as distractible, smart, funny, and scattered, but not hyper.  I think this was because we were so busy managing him, we didn't have time to objectively evaluate him.  Keeping him ALIVE was two full time jobs back to back.  Darting into traffic was a big one.  You can repeat and repeat  and repeat and keep a hawk eye all you want, but an eight year old with ADHD is gonna impulsively leap into the street, you just pray all the time that the other cars see him in time.  Or that there are no other cars.

We worried about his sense of self.  We worried he would internalize a feeling of inadequacy for being significantly behind his peers academically.  We worried about his self esteem because we spent so much of our day managing his behavior that we had precious little time to simply enjoy him.  Have positive interactions that made him feel loved.  In fact, by the time we went to the doctor for a diagnosis, he was spending a good portion of each day separated from the rest of us (in his room, or in the playroom) just to keep him from bullying his little brother and to give me a break from constantly correcting his behavior.

The thought of homeschooling him to avoid the academic comparison issue made me nauseous.  I knew I didn't have the skill it would take to teach this boy anything academic since it was all I could do to give him basic life skills surrounding kindness, toileting, and self care.  And not darting out in traffic.

Another ADHD mom I met said to me, "If I could just put my eleven year old in a stroller when we're out walking, THEN I could keep him safe..."  EXACTLY.  And we're not even exaggerating.

The school approached US about testing Matthew for a disability or issue or problem, and it was based on all the intervention he'd received and yet still where he floundered academically.  All of us felt strongly that his IQ was high, his potential was huge, but that it was locked away in his brain somehow, and couldn't get out.  His teacher mentioned dyslexia.  I wondered about Sensory Processing issues.  But the school psychologist pegged him within five minutes as "likely ADHD."  She should know.  She has it.  And so does her kid.  She doesn't diagnose, she tests and observes, and forwards her findings to a pediatrician: her testing was incredibly thorough and detailed, her report was twenty pages long, and her findings remarkably insightful.  She loved him.  (He's charismatic like that).  And she agreed that some of his non verbal processing tests were in the superior range, but this intelligence was locked away by a high degree of distractibility, impulsivity, compulsion to move nearly constantly, and difficulties with short term memory.  All of his weak spots were consistent with ADHD.  All of his teacher evaluations, parent evaluations, and verbal, written, and non verbal tests/puzzles/activities pointed towards ADHD.  So we took him to a pediatrician for a diagnosis.

She was very thorough as well, taking almost 2 hours with us to review his personality, strengths, weaknesses, characteristics, academic history, health history, mental health history, family history (as far as we knew it), and test results.  She ordered blood work.  She did a head to toe exam.  And she took the stack of papers, reports, and test results that we brought from the school, and held off diagnosing him until she had read them all.

In late August she diagnosed him with ADHD (Attention Deficit Hyperactivity Disorder).  She said in very high likelihood he would also have a learning disability (I thought ADHD WAS a learning disability but in actual fact it is a mental illness) which would become evident and clear with treatment of ADHD.  Further testing would probably be needed, but treatment of the known disorder was where to start.  We discussed at length the different treatment options, his nutritional status, all the proposed, proven, unproven, or unstudied methods, including diet changes, supplements, biofeedback, behavior modification techniques, parenting classes, the gamut.  Our pedi is awesome.  Amazing.  She takes the time, effort, stays current, is open to any and every treatment option, does not push medication, but is frank and honest about what has been proven to work and what has not, or what has not been adequately researched.  High doses of good quality omega 3 fish oils are proven with randomized controlled trials to improve ADHD symptoms and academic performance.  But overwhelmingly what works for most ADHD patients?  Is medication.

We talked circles around the issue and decided to give it a trial run on one medication, to see how he responded.  We were open to medication but also fully open to stopping any medication that didn't work or had unworkable side effects.  Of major concern is his growth: he was 8 years old, 37 pounds, and very short.  Not even on the WHO growth chart short.  Like, off the graph.  BEFORE medication.  The number one side effect of ALL the ADHD medications is weight loss and decreased appetite.  The medications are stimulants and increase the metabolism and suppress appetite.  We were worried, to say the least.

Here's the kicker for us, when it came to medication.  ADHD has no clearly defined cause, but there is a strong genetic link, and CT scans show pretty consistently that subjects with ADHD have smaller prefrontal cortexes than non ADHD subjects, and that their frontal lobes have less blood flow.  No one knows why, and if it is cause or effect, but in ADHD kids, their brain is negatively affected by their condition.  Physiologically.  Less blood flow.  Smaller.  Only slightly, but the difference is there.  The prefrontal cortex is involved in impulse control, memory, decision making, judgment of consequences, and myriad other things that Matthew characteristically struggled with.  A stimulant medication increases blood flow, waking up those prefrontal connecting nerves to allow them to better do their job.

The first day, it was like we shocked him with a lightning bolt.  He was WIRED.  He went to bed that night at nine, slept two hours, and spent the rest of the night pacing the house, getting into toys, stealing change, building legos, and jumping on the bed.  I phoned the pediatrician's office and left a desperate message MY KID SLEPT TWO HOURS AND I'M ABOUT TO EXPLODE WITH ANXIETY WHAT DO I DO but she encouraged us to try another three days.  That day, he was much better.  Calmer.  And that night although he stayed up til eleven?  He stayed asleep all night.  The next day, within three hours of waking, I had tears in my eyes.  We were playing a board game and eating a snack and NOT ONCE in those three hours did I reprimand, separate, modify, or redirect Matthew's behaviour.  We were enjoying each other's company.  All of us.  Peacefully.  And laughing!  I looked at his face and his eyes, frequently glazed over and seemingly far off in a busy dreamworld, were present and full of sparkle.  I had never seen him so fully present to the people around him.  I'd never seen him so gentle with his siblings.  I'd never seen him focus on and enjoy a board game.  He had never looked me in the eye and maintained eye contact for longer than 2.4 seconds at a time, and here he was, joking, bantering, waiting his turn....  It is hard to describe.

We fed him as much as we could, and increased his snacks.  We carefully restricted his pre bed sugar intake and started him on low dose melatonin to help him fall asleep at night, just like Ayden.  And a few weeks later?  We sent him to school.  It was like NIGHT AND DAY.  His teacher, new to the school and to Matthew's classroom (a montessori style, multi aged, play and art based classroom), said the kid I see in my classroom is NOT the child described for me in his records from last year.

He's a whole new kid.  He shot forward four reading levels in EIGHT WEEKS.  Alphabet?  In my sleep.  Spelling?  95-100% scores every single week.  His IEP was left in the dust: he can do timed tests, multi task, keep up with his peers, master new topics even in a distractible environment, sit still at his desk, control his impulses, refrain from bullying (remember My Kid the Bully?  No more, no more), speak kindly, act empathetically, be gentle, include others, and keep his hands off their stuff.  No more stealing, no more lying, no more fighting.  It was all gone, instantly.

Between the sparkle in his eye and his high speed acceleration academically, we know we made the right decision.  Matthew takes one small, time released pill in the morning with his omega 3 fish oil supplement, and all day it delivers a constant, low level of stimulation to that part of his brain that was subdued before.  And he has caught up to grade level.  In half a year he went from struggling with late kindergarten concepts, to mastering grade 3 literacy, math, science, social studies, self control, social behaviour, and writing.  He routinely writes six or seven pages in his journal during their daily 15 minute writing exercises.  He's fascinated with everything.  His speech improved.  His bladder issues improved.  He is SO proud of himself for his accomplishments this year, and so are we.  He always worked hard, he always was intelligent and capable, but it was locked away.

He's still highly energetic.  He still needs tons of outlet for his fidgets, lots of gross motor movement, bike riding, playing soccer, jumping on the trampoline, and wrestling.  He still climbs the walls, shoves his brothers when it's uncalled for, and comes up with the most hair brained ideas known to mankind.  He interrupts, tosses his laundry in the proximity of the laundry hamper without ever ONCE getting it INSIDE, knocks on the table or snaps his fingers to self regulate, and negotiates for as much screen time (mental stimulation!!! ADHD kids LOVE media/screens) as he can get out of us.  He's still MORE.  But he's a happier, less impulsive, more present, sparklier more.

But his weight stayed the same.  He didn't grow any taller.  We kept going back every three months, after trying and trying to get him to eat more and he would be exactly the same.  Finally in January our pediatrician said, this isn't working.  He can't stay on this medication unless he gains weight, and soon.  It is detrimental to his growth and we cannot tolerate that side effect.  My heart stopped.  She went over his diet with us, made some suggestions, and referred us to a dietician for further help.  I did NOT want to give him those stupid pediasure shakes with all that processed and sweetened crap but the smoothies I was making were not doing the trick.  The pedi said, focus on fat intake, not carbohydrate.  Good fats: avacado, coconut oil, flax oil, olive oil.  We brainstormed how to beef up his calorie intake by focusing on breakfast and lunch, rather than adding any more after school or at dinnertime, and by adding fat to everything.  She helped me come up with ideas for school lunches, which are tricky: you can't send any nuts or nut oil or nut butter, he's allergic to soy, and he doesn't like meat on sandwiches (she said anyways that meat is a not good fat, and to shoot for healthier fats as much as possible).  The highest fat yogurt I can find.  Cheese.  Bread with butter.  Pasta with olive oil.  No juice.  No sugar.  No candy.
She also said, weigh him at home once a week.  Don't obsess over it, but do it once a week for immediate feedback on what works and what doesn't.

The dietician was also extremely helpful.  She said add dried whole milk powder to everything, as well as the oils, to bulk up calorie intake without increasing the actual bulk of the food.  Feed him constantly.  Use whole milk and full fat cheese and yogurt, and add good fats to everything too.  She had recipies for power snacks with the calorie intake laid out in different columns depending on whether you added whole milk powder, coconut oil, peanut butter, etc.  She said we could avoid pediasure by using a good quality multi vitamin, giving him vitamin D, and giving him homemade smoothies with lots of good healthy stuff added.  (Whew).

We work hard to get calories into this kid.  HARD.  And it worked.  He gained four pounds since January!  He's 41 pounds now, and 8.5 years old and suddenly his pants are too short so I think he probably even grew a bit.  I can't wait to see the pedi in April, she's going to clap her hands with joy, I think; she wants this as much as we do, which is part of why we love her.  She's rooting for our kid, so hard.  She wants more than anything to preserve his self esteem.  That makes me know that she gets it.  She gets what matters.  She gets why we're in her office.  She gets why we work so hard.

I love my kid hard.  I'm so amped when I see his eyes so full of life, and when he tries to act nonchalant about a 100% spelling test score.  It's AWESOME.


Tonya said...

Awesome! I'm so glad you are finding what works for Matthew! You are such a wonderful advocate for your children. You amaze me.

Louise Chapman said...

So awesome. Way to go team Vose!!! So glad to hear he is growing and thriving. And seriously, the picture of Matthew when he was little? So cute :)

Caryn Ouwehand said...

This post makes me smile from ear to ear. You and Brent are AMAZING parents! Although I haven't been down this road, I know the feeling of complete relief that comes when you get to the bottom of your child's health issue, and how insanely stressful it is until you get to that point. If I recall from Silas' kidney issue, it was the worst feeling I have ever had, followed by the greatest feelings of relief I have ever experience when they "solved" it. Hugs to you super Mama!

kristen said...

This is such great news! I hope everything continues to go well for Matthew. :)

My brother has ADHD, and he was quite the terror until he went on Ritalin. As he got a bit older (and before he was diagnosed), his hyperactivity turned into violence. He is five years younger than me, but I lived in fear of him. He would throw knives at me, cooking pans, vases, etc. Once he pulled my hair so hard that my skin separated from my scalp. It was rough. And the difference that Ritalin made was INCREDIBLE!!!

As I continue to research my own issues (namely salicylate intolerance), I have found a lot of genetic overlap between those with autism, ADHD, and salicylate intolerance. We all seem to have a lack of sulfate in our systems and phenol-sulphotransferase (PST), (though you probably already know about all of this, so I'll keep it short). I have recently introduced MSM, glucosamine, and chondroitin sulfate supplements into my routine, and that has helped with reactions and concentration. The biggest help of all: epsom salt baths at night!!! Epsom is magnesium sulfate and it is absorbed through the skin. It makes me calm and relaxed, both physically and mentally. I can go to sleep so easily afterwards, and I have the best sleeps ever. It also has dramatically improved my reactions.

I have tried melatonin several times, but would always get depressed while taking it. I found out it was upsetting my serotonin levels.

Anyway, keep us updated!

kristen said...

P.S. You mentioned dietary changes. What, in particular, were changes you had to make besides trying to keep calorie intake high?

The low salicylate/low phenol diet that I'm on (out of pure necessity) is almost the same as the Feingold diet. The Feingold diet is usually followed by those with autism, but many with ADHD find it helps them, too.

Tamie said...

I love to read this. It's wonderful on the level of reading about your absolutely tremendously awesome parenting. It's also really interesting to read about what ADHD is (a mental illness? who knew?), how it affects someone, and the effects that meds can have. It's been amazing to follow Matthew's journey all these years, and to truly celebrate with him now.

I have a question for you. I've noticed in the last--I don't know--10 or 15 years--that ADD and ADHD have become more you think that this is because the condition (is it called an illness?) is only recently being discovered, or is it because it's being diagnosed more often, or is it because it's actually occurring more often in the population? Do you know what I'm asking? Also, do you have any idea what the stats are on how often it does occur in the population?

Tess and Si said...

I'm Louise's friend, and have come to look forward to your blog posts linked from her page. Copy that on the earlier comments re: being a great parent (but not just bragging about it, also ACKing the hard parts so I don't hate you). Wonderful to hear your positive experiences in rediscovering Matthew. Thanks for a lovely post.

nancy Smith said...

This post is so amazingly well written. Were the WHO growth charts specific for Asian ethnicity? Regardless he has to grow to be healthy. I love that his impish gleam in his eyes is still very much there along with his improved impulse control. You and Brent are the perfect God given parents for him . You just keep fighting and pushing for him and never give up.
Love you...and him!

melissa v. said...

WOW you guys are amazing! The response on here has been swift and full. Thank you all for responding so supportively and for seeing the sparkle and the hardship, both.

@Tonya, you amaze ME! And you're my 'big sister' in parenting. Thanks for the love.

@Louise, thank you! I'm so glad he's thriving too. That pic from 5 years ago is so cute and captures him so well =)

@Caryn, exaaaaactly. HUGE relief, to have a name for your kid's health issue, and tools to treat it. Huge. xo.

@Kristen, thanks for your comments. I'm so sorry your brother treated you that way, and for so long! The sulphate information was new to me, thank you for that! The diet we tried was gluten and caesin free; some ADHD kids are sensitive to these foods but it would appear that Matthew is not. The diet made no difference.

@Tamie, xxxooo. I was floored to discover ADHD is considered a mental illness. I still think that is a bit weird, and not entirely accurate but what do I know? =p As for the prevalence of ADHD it is the same across cultures, the same % of people have it. I've heard of lots of reasons for increased diagnosis rates: increased awareness, increased support staff in public schools with training in ADHD testing, warning signs, and treatment, over diagnosing, and misdiagnosing. It appears that although some children are diagnosed ADHD incorrectly, mainly the increase is due to our increased awareness, just as with any other mental illness.

@Tess, yay for delurking! I'm glad to have you, thank you for your kind comment =)

@mom, you might be biased =p the WHO chart was Asian specific. And I'm so grateful he's my kid. He brings so much sparkle...

tamie marie said...

Thanks for the response, Mel. Yeah....hey....what's the definition of mental illness anyway? Lately I've been thinking it should all just be called Mental Variation.


This is me thinking lots of things I don't know how to put into words.