Suspect ADD - need advice, resources, where to go from here...

[americle]

Hi Fellow Mothering Parents --

My DS is 10, and has been challenging from Day 1 (wouldn't breastfeed, but that's a very old story).  Finally tonight after our Family Meeting, my dh and I looked at each other and realized that perhaps all of our parenting frustrations with our oldest child are not our fault after all.  This child has taught me humility more than any other thing in my life.  First, I looked down my nose at anyone feeding formula to babies, then (after struggling with 5 different lactation consultants and being unable to get any milk by pumping) I had to feed him formula (now I'd do goat milk, but that's another story too).  Now, after believing that ADD dx is just a way to get kids to conform and control them (I'm a former teacher), I think perhaps there is something more to such a dx.  Let me tell you what I'm talking about with my 10 year old ds:

- any request by me or his dad is met with a knee-jerk response of "no" or "no-way".  His constant contrariness is a constant frustration.

- there is NO self regulation -- he immediately acts on every feeling, even if it is completely socially inappropriate.  

- he does have empathy, and he does make connections with others (I thought perhaps aspergers, but now I don't think so)

- he can focus deeply on reading (his favorite pasttime), and he gets so absorbed as to block out the world (until I started looking at ADD symptoms, I figured this meant there was no way he could have an attention deficit disorder)

- he has one good friend but no other friends he wants to invite over

- his behavior at many times seems completely out of sync with the rest of the world and bizarre

- he won't try anything new (took him to Worlds of Fun and spent three hours trying to get him to go on ANY ride; he won't try sports of any kind; even if he agrees to try something new, he needs CONSTANT support and encouragement to engage in the new activity)

- his 1st-3rd grade teacher always said if the class were going to be going outside, she'd tell ds to start getting ready five minutes before the rest of the class, because it would take him that much extra time (because he gets distracted when doing things like putting his shoes on)

- we used to secretly call him "Destracto Boy" because he was SO easily distracted that small tasks took forever or never got done.

- as a baby, we'd go to Mom's Club meetings with the other moms and their babies.  The other moms all were able to sit down and talk while their babies were content.  Not me & ds -- we were up & moving.  He had to be bounced constantly -- he wasn't happy unless I had him on my hip, moving around.

DS is not vaccinated.  I was a Mothering mom all the way.  He has gone to a private Montessori school since he was 3.  I KNOW that if he'd been in public school, he would have been diagnosed.  But do I want him to be "diagnosed"?  Not really.  I'm against medication unless ABSOLUTELY necessary.  I am VERY willing to change diet, but we already eat quite healthily -- organic whole foods primarily.  The occasional processed food from the health store, but I definitely watch out for food colorings & preservatives which we avoid like the plague.  He does eat school lunches, though, and I don't have control over those.  He loves SUGAR (my downfall too).  I limit sugar to dessert after dinner, though.  Again, what he gets at school has not been something I've monitored.  I do know the importance of omega 3s, but honestly haven't been consistent with supplementation.  That will change as of tomorrow.  Now that we are looking at this and thinking -- "Whoa, maybe it's not our parenting -- maybe this kid just really can't control himself."  Tonight at family meeting was a disaster.  He was disruptive in so many ways.  I really don't think he meant to.  

So, now what?  What do I do?  Do I seek out a diagnosis, or do I treat as-if that's what we're dealing with and see what happens?  What resources are there?  What do I do?

I appreciate any help and guidance from the Mothering Community.

Thank you,

Tamara

[Laedi]

My only suggestion would be trying the gluten free/casein free diet.  It does help my 6 year old a little, who mirrors exactly what you said almost 100%. 

I don't really want to medicate either.  Although, I've tried and tried and tried until I'm completely blue in the face.  She's in public school (kindergarten) and she's hit teachers, tells everyone no, screams and runs around (not in the "oh im just a kid trying to play" way).  She fights with me all day about *anything* and you know what?  I'M EXAUSTED.  I decided I really had to get outside help.  She's was on the waiting list to see a therapist FOR A YEAR.  We finally (last week) got the closest thing to a diagnosis.  You ready for this?  "I don't know."  *mega facepalm*   She narrowed it down to ADHD and PDD.  Yeah, I knew that much.  Thanks for the help. lol  So we're back on another waiting list. =(

I don't know where you live, but if there's a shortage of pediatric behavior specialists in your area, just go ahead and get on a list so if you change your mind later you don't have to wait so long.

[khaoskat]

Another suggestion I am going to make, and trust me I have done a ton of research on this issue, is to have your child undergo a sleep study.  You would not believe what sleep depravation in a child can look like.  I have two children, with two different sleep disturbances.  My eldest has Sleep Apnea, and my second eldest has RLS/Periodic Limb Movement Disorder.

But, do some research on side effects of sleep deprivation in children...it will amaze you.

[Emmeline II]

Quoting myself in another thread:
 

We tried a family therapist for awhile and pretty much just figured out that our discipline style did not really impact his behavior; though too lenient or strict made it worse, the middle ground did not make it better, just not worse. Ds appears to have little intrinsic motivation to "do the right thing" and lacks in empathy; though these seem to have improved with medication.

Kindergarten was hell...Though ds' behavior at home improved immensely after a couple months of school.

So, we went to the family therapist from February to May. In June I took my bullet list to the family doctor who diagnosed ADHD/ODD on the referral form; I sent the referral form to the local children's hospital that has a clinic with a developmental pediatrician--once an appointment is had it is a full day of interdisciplinary consults and evaluations.

While waiting on the DP we had an evaluation with an occupational therapist in July; this report was very useful in communicating what ds is like, to his teacher, therapist, and psychiatrist. The OT noted his sensory issues but also said she say signs of Asperger's but she is not qualified to diagnose that.

In August ds freaked us out by playing with matches in a closed bathroom and we finally took him to a child psychiatrist. The psychiatrist diagnosed ADHD w/mixed disturbance of emotion and conduct but is not ready to diagnose Asperger's yet; she also recommended "psychotherapy"; I found that the therapist she recommended does CBT and we're hoping that ds will benefit more from her than the last therapist, though she did mention how "unique" ds is in his issues. Ds is now taking Concerta.

Ds school experience this year is MUCH MUCH MUCH better than last year. Though he is still exhibiting the same "quirks," he is now redirectable. His new (charter) school is much smaller, he has a more understanding/flexible teacher and a special ed person who actually sees ds issues as something to be addressed with actions other than behavior charts. Ds is also gifted which complicated things with his last school (which is primarily concerned with working on grade level, anything beyond that they didn't care).

Just before Halloween ds was still having significant impulse control problems in unstructured classes and it was getting worse. His Dr. upped the dose of Concerta which made things worse and went back to the lower dose. At the winter break we switched to Vyvanse and he has demonstrated significant improvement in impulse control and did not have any problems in school last week, and his teacher said that he was arguing less with classmates. So we went from what you and Laedi have described, to an average, pleasant boy. Since starting the Vyvanse he has also made significant progress in therapy, whereas before he was not progressing as the therapist expected.

The only difficult part of my day is getting ds ready for school in the morning--the new medication does not last as long and ds acts a bit like someone hit with Joker gas (from Batman), though by the time dh gets him to school his medication has started working.  We also give him melatonin as without it he can take up to 3 hrs to go to sleep. He has an appointment with a developmental ped at a hospital behavior clinic for children next month.

I don't think anyone on this board went to medication without trying MANY other things. But when you have eliminated parenting style, diet, and sleep disorders, sometimes the issue is "just" that the body is not producing enough neurotransmitters of a certain type. There wasn't a behavior chart in existence that would motivate ds until he was capable of being redirected and motivated (after medication).

Edited by Emmeline II - 1/10/11 at 3:15pm

[AngieB]

My ds is ADHD. I would say that by the time he was walking dh and I knew there was something "different" about him. From about age 2 on we had him at dr.'s asking them what was wrong with him. We had test after test ran, we changed his diet, we tried every discipline approach, I read hundreds of books, nothing helped. School was a nightmare. I got phone calls from teachers at least 3-4 times a week. He was kicked off the bus numerous times. Going out in public was terrible, going to friends houses was terrible, we tried putting him in sports to burn off all his energy and it was terrible. I became almost a hermit because I couldn't deal with having ds around other people. But our home life sucked also. I had to spend so much time and energy dealing with ds that the other children suffered. I was becoming physically sick from the stress. People were constantly making comments about my parenting or ds's behavior.  Finally out of desperation we tried medication and it was life changing. For the first time in his life ds could function. In the last 2 years he has become a different kid and the whole families life has improved. And I finally see that I'm not a bad parent and ds is not a bad kid.

I'm not saying to medicate your ds. I completely understand not wanting to, it was a last resort for us as well. I just wanted to tell my story so you know your not alone. Your ds probably can't help it and it's even harder on him than you. Kids with AD(H)D have alot of self esteem issues because to them it feels like they can't do anything right and no one likes them. I hope that you can find a solution that works for your family.

[tankgirl73]

Vyvanse is a new one for me, haven't heard of that one... must look into it as we've already quit Concerta due to tic side effects and Adderall is giving him serious mood swings and irritability.

Anyway, to the OP -- your son sounds a lot like mine, the main difference being we've homeschooled instead of going to Montessori school, and my son was vaxed.  We also delayed getting any dx because I believed the same as you.  But finally, enough was enough.  We'd tried everything, dietary changes, parenting techniques, etc etc, and he was still out of control and most importantly HE was unhappy.

We got the official diagnosis last spring of ADHD-combined and Asperger's.  Like you, I hadn't suspected Asperger's because of certain things he could do -- he's very very social, for instance.  But he does lack in empathy, and while he's socially active, his social *skills* are very lacking.  When I learned that Aspie kids can actually be quite social, I looked into it some more, found tons of "lightbulb moments"... then the Dr confirmed my suspicion.

Meds have made a huge difference for us, for him.  As I mentioned, we're still having problems, but it's a big improvement.  One big one is that after starting meds, a latent musical gift, which had always been there just under the surface, finally exploded and he's rapidly making up for lost time.  He's EXCEPTIONALLY talented, of the sort that makes people do double-takes and say "wow", but he just never did anything before to show it.  Now he's in multiple bands (even joined the middle school band program!) and a local youth orchestra, he spent his Christmas money on a pro digital multi-track recorder and is working on laying down some tunes.  He also has said that he LIKES HIMSELF better when he's on the meds.

At least, he said that when he was on Concerta... he wouldn't say it in the depths of a mood swing right now with the Adderall.  In fact, quite seriously, he has said on more than one occasion (while in the middle of a meltdown) that he would rather kill himself than feel this bad.  Once he's 'recovered' he doesn't feel that way, but obviously we need to find a better solution.  So I'm not promising you "take a pill and all your troubles will go away."  It can still be difficult to find the right treatment.

But, when all other avenues have been tried, I do now believe that meds are a legitimate option.  I've come to think of it like diabetes.  Some people, for whatever reason, their pancreas doesn't make enough insulin, so they need to take it artificially.  Some people, for whatever reason, their brains don't make enough dopamine, so they need to take it artificially.  

I'd LOVE to find a better solution, to find a cause and treat that rather than the symptoms.  And I'm going to continue looking that way too.  But in the meantime, the meds make life livable for him, and for the rest of us.  

[Emmeline II]

Originally Posted by tankgirl73 

Vyvanse is a new one for me, haven't heard of that one... must look into it as we've already quit Concerta due to tic side effects and Adderall is giving him serious mood swings and irritability.

Yes, ds' doctor said it was new when she suggested it. I've also read that Adderall often has the side effects you describe.

[americle]

Thank you, Thank you everyone who has posted a reply -- VERY helpful.  Someone mentioned the self-esteem issues associated with ADD, and it hit home.  Yes, ds is always concerned that people like him -- I think because so often he seems darned unlikeable.   I am very heartened.  I had gotten to the point as a mother where I was really not liking my child much of the time, and that is NOT a place I want to be.  It helps that what we have always termed his "choices" (as in, "You need to make better choices, Son") may not be choices at all, but rather a lack of self control that needs interventions we never even considered.  Just today has been better, as I started putting the responsibility for his actions not on me and not on him.  Obviously, he is responsible for the outcomes of his actions, but I haven't lost patience with him even once today.  Just acknowledging ADD is helpful.  Now for the interventions...

Has anyone here heard of/used Dr. Daniel Amen's materials?  I ordered this package last night:

http://store.amenclinics.com/special-product-packages/healing-add-power-program-family-upgrade

His book had so many great reviews on Amazon, and this package looked comprehensive and potentially helpful.  Any thoughts?

Thank you for the help, Mothering Village.  :-)

Tamara

[Emmeline II]

Originally Posted by americle 

Has anyone here heard of/used Dr. Daniel Amen's materials?  I ordered this package last night:

http://store.amenclinics.com/special-product-packages/healing-add-power-program-family-upgrade

His book had so many great reviews on Amazon, and this package looked comprehensive and potentially helpful.  Any thoughts?

Thank you for the help, Mothering Village.  :-)

Tamara

I would see if you can get at least part of it from your library to preview it. I've read a lot of not so helpful books in trying to help ds. Here is the Amazon review page for the Kindle addition of  

Healing ADD Breakthrough pgm that Allows you se Heal 6 Types ADD

http://www.amazon.com/Healing-Breakthrough-Allows-Types-ebook/dp/B000R7G8KM

[Evan&Anna's_Mom]

I think the first thing to realize is that a diagnosis is not the same as starting medication.  With a diagnosis you know what you are (probably) dealing with, but then there are lots of treatment options.  Including deciding you don't want to treat at all.  You get to control what you do at each step, even if the doctor is pushing one solution or another, you can always say "no thank you".  But without a diagnosis, you are sort of shooting in the dark. 

My 7 YO was diagnosed with ADHD last year.  Her psychiatrist was great about laying out options and suggested we start with more natural treatments before moving into actual ADHD meds.  For us, the suppliments/diet change option didn't work and we did choose to medicate.  We were already in a pretty good space regarding routine, school and family discipline etc.  But the ADHD was really playing havoc with her school performance.  Her teacher was wonderfully patient but it was heartbreaking to hear DD constantly say she was "bad" and "the worst kid in her class".  Not that anyone told her this, just that she could see that she didn't behave like the others.  That was the point where we decided to take action, mostly to saver her self-esteem.

For US medication ended up being the right answer.  She takes Vyvanse and its been wonderful. No change in her personality, just the ability to actually sit still and learn at school.  Her academic performance shot up about 2 grade levels in about 6 months.  Her teacher basically said "once we got the noise in her brain quieted down she really took off".  On a theoretical basis, I hate the idea that she takes meds.  On a practical basis, it has made a world of different TO HER and she is really a much happier kid and I find that I am a happier mommy.  In the end, that met my priorities. 

But my real point is that diagnosis DOES NOT equal medicate.  They are separate steps and separate decisions.  Take one step at a time and evaluate all of your options.  Then make decisions based on the facts, not just what you suspect is true.

[americle]

Thank you, Emmeline & E&A's Mom -- I really appreciate you taking the time to respond.  I'm looking at local pediatric psychiatrists now, just to get ducks in a row in case we decide it's best to have him seen by a professional.  At this point, the plan to to get Dr. Amen's package in the mail, go through it, make up our own treatment & discipline plan using his recommendations, and work the plan for awhile to see if it makes a difference.  If we don't see improvement, we'll likely seek diagnosis.  Thank you so much!  Tamara

[columbusmomma]

My DS was dx with adhd when he was in kindergarten, age 6. I was kinda in denial about it though! Other teachers had been concerned and mentioned "behavior" issues and concerns since Pre-K. Initially we tried diet which did nothing and also neurofeedback, which was great but costly. We worked with a psychologist for over a year. She also did a TOVA test, which to me was helpful as it is objective data, vs. subjective like the Connor's test,etc. that is standard assessment for adhd. Then in 2nd grade I took all the psychologists paperwork to the pediatrician, desperate for help and tried medication. She placed him on vyvanse and it has been great. He can now stay focused in school and is never in trouble in class lol. Very little side effects. Sometimes on the weekends we go med free, same with breaks from school. We have been lucky that without medication for those first few years, he didn't fall behind academically. It just took him longer to do work and sometimes he didn't complete work but was still able to progress academically.He had a lot of disruptive behaviors in the class and couldn't sit still too long. It was effecting his self-esteem. Now he has his own desk facing a wall,at school(the others all sit together at tables)and can choose to go there for work if he needs too. His teachers are great about trying things to help him succeed during the day in the classroom. We are very fortunate to have great teachers! Working with teachers is so important! I've read many different articles in my research that explains children with adhd are about "2 years" behind as far as behaviorally and socially when compared with their peers. So it can be helpful when thinking of brain maturation to place the child about 2 years behind. In my experience as DS as gotten older, the adhd becomes easier for him to understand and he can now say, i have adhd and need to do x,y,z to compensate.  He also gets lots of exercise, outdoor time(he played with friends outside in the snow for over 2 hours last night!),omega 3,6,9 suplementation, and magnesium.