If I had known... (ADHD meds)

[BlsdMama]

Our second DS started methylphenidate a couple years ago.

He is dx'd both ADHD (inattentive) and ODD - Oppositional Defiance Disorder

I resisted meds for over three years, trying every skill in my arsenal and natural solutions.  Our relationship was truly miserable and I've never had that with any of my kids.  There was zero joy in one another.  We finally decided to give meds a shot out of pure desperation for many reasons, some of them serious and I was definitely DONE homeschooling.  

We started meds a couple years ago.  We were pessimistic but I felt I needed to give one last ditch effort to justify putting him in school and away from me.  I was miserable.  He was angry.  At the end of the first day,  I thought getting through it without arguing, fighting, and yelling might be a fluke.  By the end of the second day, we knew the meds were working.  There was zero doubt because we hadn't gone two days in a row without an argument in years.

His meds wear off and he is far more argumentative in the early AM and late afternoon/early evening, but meds give him the ability to practice skills.  I hope he doesn't consider getting off them in his young adulthood at all - I think it would result in rash choices, a lot of anger, and likely jail time if I'm honest.  Certainly failed workplace scenarios at the very least.

The neuropsych also explained to us that because of his scenario (very low working memory and normal IQ) that the meds would "stretch" that working memory making learning less frustrating.  We experienced a leap in academic abilities / lowered frustration as well.  We still have a long way to go.

All this to say, I was that mom who refused to even try meds.  And I refused for far too long.  This morning, while he piled waffles a mile high and talked about a raccoon eating the dogfood, I was laughing along with him.  I realized that I am genuinely beginning to have that "easy" relationship with him, guard lowered, enjoying his presence.  I'd say it's been about five years since this has been our norm.  I can't even fathom going through puberty without the meds.  They are expensive because I'd never remember to administer three times a day so he takes a time released capsule.  I'd sell blood, hair, and teeth before I went without them, lol - joking, but not, kwim?  So, if this helps someone, great.  

 

[bolt.]

Thank you so much. The general advice to try medicine only as a 'last resort' for ADHD / ODD is all over the internet. I really think we need stories like yours to provide balance and a reminder that we don't consider medicine the enemy for most other conditions. Tools are worth trying. Medical science is amazing. It doesn't need to be something we only turn to after we feel that we have failed. I appreciate your vulnerability in sharing this story.

Edited July 27, 2019 by bolt.

[BlsdMama]

22 minutes ago, bolt. said:

Thank you so much. The general advice to try medicine only as a 'last resort' for ADHD / ODD is all over the internet. I really think we need stories like yours to provide balance and a reminder that we don't consider medicine the enemy for most other conditions. Tools are worth trying. Medical science is amazing. It doesn't need to be something we only turn to after we feel that we have failed. I appreciate your vulnerability in sharing this story.

Thank you for that.  ❤️ 

In all seriousness, I wonder how this scenario would have played out if I hadn't parented a lot before getting to this point.  I felt like his choices really reflected our parenting strategy and in today's society, we hold parents accountable for all kid choices.  This wasn't even his choices TBH - it's a biological challenge that he has to cope/deal with to overcome.  

I feel as though parents are at a distinct disadvantage - damned if you do and damned if you don't.  You hit the nail on the head when you speak to vulnerability.  To admit to other moms that we utilize meds for a child has only been met with (mostly) discouragement.  Only those few who are intimately acquainted with our family, our other children, and how hard we fought for this relationship for years, appreciate how hard it was and how far we've come and that meds are a part of our solution and it was not the easy way out.

I've had moms admit their kiddo is on meds after I've opened up about it.  I was blessed to hear a young woman speak on ADHD and dyslexia.  She is at Notre Dame now and being very successful but her mama fought for her and for learning challenges.  When asked, in a roomful of moms, what was the most important change that was made (all sorts of remediations, OG, etc.) she said medication for the ADHD was life-changing for her.  You could see that some faces fell, because they aren't willing to go there.  I understand that.  I have two other kiddos who have ADHD (hyper)  - one of whom is diagnosed and one who is not and we've opted not to utilize medication for them and their own scenarios.  

There was something comforting in being able to say, "Hm.  What we've done so far i.e., parenting has been largely successful for many other kids.  We have to get to the bottom of finding success for THIS kid."  And I honestly don't know how parents of 1 or 2 navigate this emotionally because using meds for a kid with challenges is still not socially acceptable.  

I shared this meme on my facebook a couple months ago.  It pertains to both dyslexia and ADHD.

 

I think there is an important difference to recognize and understand between a diagnosis and a label. I feared slapping a label on my kid. I was afraid they’d “own” the label and use it as an excuse.

Instead, understanding the diagnosis, it’s a way to move forward, not an excuse to lag behind.  Never fear a diagnosis. It’s merely a road sign pointing the direction to the path forward.

[Jaybee]

We haven't had the ADHD challenge, but we have the dyslexia challenge. I read an article yesterday that someone had linked on Facebook about ADHD behavior and sleep apnea. It was very interesting, but because I read it on the Facebook page and didn't click on the link, I can't find where it is. Not trying to sidetrack/dismiss at all, but for some people, that might also be a place to look for help. Our bodies are so intricately made; it is fascinating, but can also be so complicated in figuring out how to help our kids and ourselves.

[marbel]

We also waited too long to get medication for our ADHD (inattentive) kid. I listened/read too much about meds making kids "zombies" and "hiding their real personality."  No doubt it's that way for some kids. But it's not universal. 

We had to play around with dosage a bit but after taking the first pill my kid said "wow!  I never knew I could think so clearly."  I will never forget that moment and try to push away the regret that it didn't come till he was in his teens.  

As for labels - he had given himself plenty of labels: stupid, lazy, incompetent.  Other people (not our family, but teachers, other parents) did too. Giving him the real names for what was going on - ADHD and his learning disabilities - allowed him to let go of the negative labels he had given himself.   Unfortunately, there are still people out there who look at meds as a universal negative and "taking the easy way out."  Or as one acquaintance of mine asked "can't he just work harder?"

Thank for posting, Kellyl!

Edited July 27, 2019 by marbel

[TravelingChris]

It actually is really sad to watch really smart kids who are ADHD but with no medication and hadn't learn how to cope----only one of my three adult children is actually now on ADHD medicines and she is severely ADHD while the others were mild and moderate,.  My daughter was telling me about one of her friends and we both agreed that he is messing up in college and social activities because he is unmedicated and probably was his entire life.  People can't depend on him and that causes resentments and he lost a volunteer position in an organization because of this.  He is smart, funny, etc, but super bad executive functioning skills.

[cjzimmer1]

My sister could tell a very similar tale. Her DS was constantly getting in trouble because of his short fuse and inability to control the anger. The teachers kept advising that she should punish him by removing him from sports but that physical burning of energy was the only thing that kept him barely functioning. When they finally tried the meds her teenager boy came to her in tears thanking her for letting him take meds because he finally could function. He had been labeled a bad kid by every teacher he ever had and wanted to do better but just couldn't control himself on his own. They truly are lifesaving for some kids.

[cintinative]

Sort of off topic but @BlsdMama I recently discovered (via a pharmacy tech) that my son's methylphenidate is less than half using the GoodRx than it is using our insurance. It's about $63 at my pharmacy for a 30 day supply, but with insurance it is $142.  It doesn't count toward the deductible but with that savings, we don't really care. 😃

 

Edited July 27, 2019 by cintinative
typos, clarity

[Soror]

For sure, we put ds on meds when he went to school and he has down well with them. They are def. sometimes overused but too many in the hs' world dismiss them without even knowing anything about them and leave their kids to suffer and get made when they act like kids with ADHD. 

[Storygirl]

Thank you so much for posting, Kelly. I could have written your OP exactly.

[ktgrok]

Amen!!!!!

Right now my son and I are both off our meds due to insurance/job change snafu, and yeah..he's back to making annoying snide comments, I'm sharp tempered, and my house is a disaster. We will be back on them by the end of next week, and it can't come soon enough. 

Meds are not the worst option in many cases. Being miserable without them is way worse for a lot of people. 

[ktgrok]

We are actually going to have to explore them at some point for DS6, and the ONLY reason we have held off is that his PANDAS doctor is concerned that the meds could make his OCD worse, and he is already barely eating so appetite suppression is a concern. But if those were not issues, we'd be at that point with him, as he gets in trouble and I KNOW meds would help that, and his self esteem. We may end up trying them despite everything else, because of that. 

[BooksandBoys]

I could have written a similar post, and thank you for writing it. 

We waited until DS1 was 8 to try meds because everyone around us (and the Internet too) said meds were evil. He is diagnosed autism level 1, highly gifted, and with severely inattentive ADHD. I thought “I” needed to be a better parent and he shouldn’t “need” meds. But he immediately felt more in control of himself, and was suddenly able to do all the things he had been trying to do and failing (go to Cub Scout meetings, learn the advanced math, read longer books, try martial arts, learn. HOW to take care of himself and his ADLs). He has never once in 3.5 years argued about taking his meds. He likes them. An unexpected benefit is that they control a lot of his autism stuns too. They change our family life for the better (and, yes, morning and evenings are hard, but they are getting easier as he learns how to manage himself during his medicated time and it spills over). All those systems and routines and methods for doing things that I’ve always taught, all that executive function support, it can actually be learned when he’s on meds and, eventually, it’s remembered, and, even more eventually, those skills slowly spill into the unmedicated hours. 

[BooksandBoys]

3 hours ago, Ktgrok said:

We are actually going to have to explore them at some point for DS6, and the ONLY reason we have held off is that his PANDAS doctor is concerned that the meds could make his OCD worse, and he is already barely eating so appetite suppression is a concern. But if those were not issues, we'd be at that point with him, as he gets in trouble and I KNOW meds would help that, and his self esteem. We may end up trying them despite everything else, because of that. 

Just wanted to mention that we briefly tried  stimulants for our DS2 (ASD, adhd combined, severe anxiety which borders OCD at times when he’s very severe). Stimulants were a disaster for him (increased anxiety, aggression, anger, you name it), so he ended up on an atypical ADHD med (Intuniv ER) which actually both slows his body a bit (targeting that hyperactivity), and also has a very nice anxiolytic effect. It took a bit longer to see the reduction in anxiety, but it was wonderful for him. 

With DS3 (almost 6), we didn’t even try traditional stimulants due to his anxiety. We went straight to Intuniv (they both take the generic, guanfacine). Again, a nice, mild anxiolytic effect. And Intuniv doesn’t reduce appetite, which is very important with DS3. 

Edited July 27, 2019 by BooksandBoys

[ktgrok]

22 minutes ago, BooksandBoys said:

Just wanted to mention that we briefly tried  stimulants for our DS2 (ASD, adhd combined, severe anxiety which borders OCD at times when he’s very severe). Stimulants were a disaster for him (increased anxiety, aggression, anger, you name it), so he ended up on an atypical ADHD med (Intuniv ER) which actually both slows his body a bit (targeting that hyperactivity), and also has a very nice anxiolytic effect. It took a bit longer to see the reduction in anxiety, but it was wonderful for him. 

With DS3 (almost 6), we didn’t even try traditional stimulants due to his anxiety. We went straight to Intuniv (they both take the generic, guanfacine). Again, a nice, mild anxiolytic effect. And Intuniv doesn’t reduce appetite, which is very important with DS3. 

Thank you!!! I've been trying to find people with experience with Intuniv!

[ScoutTN]

On 7/27/2019 at 7:19 PM, Ktgrok said:

Thank you!!! I've been trying to find people with experience with Intuniv!

It has been a good fit for my Ds too. He takes the generic (guanfacine) extended release. 

Eta - Not a massive, night and day type improvement for my kid, but measurably helpful for sure. 

Edited July 31, 2019 by ScoutTN

[Garga]

I’ll chime in and say that I started my son on the stimulants when he was 7 and it was wonderful—it was like you said, where we’d had non-stop tension and arguments, but taking the meds made him a sweetie pie.  But after a few years, something changed and they made him crabby and short tempered.  (Maybe puberty?  Some sort of hormonal thing?  I dunno.)

We’re just now switching to non-stimulants and seeing whether or not they work. 

OP—I was quick to get him on meds, but sloooooow to realize that something changed and the meds were making him angry.  I thought it was just being a snotty teenager stuff, but it turned out that it was the meds.  So, if your son shifts and gets angry in the future...consider that it might be the meds.  

I don’t know if my story is a fluke or something, but there you go.  

  

[Storygirl]

1 hour ago, kand said:

That’s interesting, as dd takes a stimulant and she finds it really helps her anxiety.  That’s one of the primary thing she notices about it. I wonder if it varies with the type of ADHD.

The effects also can vary with the type of stimulant, because there is more than one kind. One kind of stimulant was terrible for my son, and the other kind works very well.

Guanfacine made DS sleepy but didn't help the other ADHD issues at all.

It is really so variable by individual. And individual needs can change. DS has made several switches over the years he has taken meds. I think that's not uncommon, and it's why he has to have six month med checks with the doctor (the law here) to discuss how things are going and decide if anything needs to be altered.

[IvyInFlorida]

11 hours ago, BooksandBoys said:

I could have written a similar post, and thank you for writing it. 

We waited until DS1 was 8 to try meds because everyone around us (and the Internet too) said meds were evil. He is diagnosed autism level 1, highly gifted, and with severely inattentive ADHD. I thought “I” needed to be a better parent and he shouldn’t “need” meds. But he immediately felt more in control of himself, and was suddenly able to do all the things he had been trying to do and failing (go to Cub Scout meetings, learn the advanced math, read longer books, try martial arts, learn. HOW to take care of himself and his ADLs). He has never once in 3.5 years argued about taking his meds. He likes them. An unexpected benefit is that they control a lot of his autism stuns too. They change our family life for the better (and, yes, morning and evenings are hard, but they are getting easier as he learns how to manage himself during his medicated time and it spills over). All those systems and routines and methods for doing things that I’ve always taught, all that executive function support, it can actually be learned when he’s on meds and, eventually, it’s remembered, and, even more eventually, those skills slowly spill into the unmedicated hours. 

 

YES, all this stuff. 

[IvyInFlorida]

I was extremely resistant to meds.  I'm pretty sure at some point I didn't think ADHD was a real thing.  But I will never forget the first day I gave him that pill.  An hour later, he took a puzzle off the shelf, sat down and did the whole thing by himself, and looked at me and said, "mom, I didn't know I could do puzzles!" 

I could say all the same things others have about drastic improvements in family relationships, academics, sports, etc., but the things that makes meds a miracle for him is that without them, he is an extreme risk taker and gets hurt often.  When I read somewhere about how unmedicated ADHD boys are so much more likely to get in car accidents, it all clicked for me.  This isn't about me and how I feel about my perceived parenting failures or whatever--this is about him and his life.  I wish I wouldn't have been so stubborn about it for so long.

[ScoutTN]

The non stimulant meds do not seem have appetite suppressant effects. My ds does not experience the common sleepyness side effect. Individual body chemistry really does play in. 

[SanDiegoMom]

2 hours ago, IvyInFlorida said:

I was extremely resistant to meds.  I'm pretty sure at some point I didn't think ADHD was a real thing.  But I will never forget the first day I gave him that pill.  An hour later, he took a puzzle off the shelf, sat down and did the whole thing by himself, and looked at me and said, "mom, I didn't know I could do puzzles!" 

I could say all the same things others have about drastic improvements in family relationships, academics, sports, etc., but the things that makes meds a miracle for him is that without them, he is an extreme risk taker and gets hurt often.  When I read somewhere about how unmedicated ADHD boys are so much more likely to get in car accidents, it all clicked for me.  This isn't about me and how I feel about my perceived parenting failures or whatever--this is about him and his life.  I wish I wouldn't have been so stubborn about it for so long.

THIS. My dd didn't get diagnosed until 18, and had already gotten into three (parking lot thankfully) accidents.  She started on meds and THEN realized how much easier driving is.  She was working so hard before just to maintain a sufficient level of attention and it was creating a lot of anxiety.  She had almost given up on driving. 

Edited July 28, 2019 by SanDiegoMom in VA

[BooksandBoys]

16 hours ago, Ktgrok said:

Thank you!!! I've been trying to find people with experience with Intuniv!

Feel free to PM if you have more questions. It’s not perfect, but it’s a good fit for them. 

[BooksandBoys]

14 hours ago, kand said:

That’s interesting, as dd takes a stimulant and she finds it really helps her anxiety.  That’s one of the primary thing she notices about it. I wonder if it varies with the type of ADHD. She didn’t start medication until she was 19. Wasn’t diagnosed until 18. Strangely, even looking back I don’t see any signs of it in hindsight until high school when her workload increased a lot and everything took her far, far longer than it should have (and anxiety and stuff kicked in). Otherwise, I don’t think anyone would guess she had ADHD (inattentive/impulsive). 

I will look at Intuiv, as she doesn’t get long enough coverage from her current med, but an extended release is a bad idea for her due to the appetite effects. Does Intuiv take awhile to show effects?  Do you have to be completely off stimulants in order to try it? She and I both like that adderall clears the system very quickly. Made it very low risk to try and fast to see effects. 

From my sample size of 3, I think Intuniv works better on the hyperactive side of ADHD and stimulants work better on the inattentive side, but either can reduce anxiety if they help the child control their behavior. Unless they, in that particular kid, raise anxiety (like stimulants did for my middle DS). My oldest doesn’t need the movement reduction, doesn’t have a lot of anxiety, and he does super well on an extended release stimulant (we keep the dose on the low side to minimize the appetite effects, but we still have to work hard to get enough food into him). He did express that he was worrying less after he started, and I think that’s because he had gotten used to being in trouble all the time and suddenly, he could control himself. Also, there was a typo in my first post. His meds control his autism STIMS not his stuns. If I put him on Intuniv, I think he’d spend his life asleep; he’s just a lower activity kid. 

Middle child is combined type ADHD, but it leans heavier to hyperactivity. Before meds, he was a literal ping pong ball all day long, bouncing off anything in sight to get the sensory feedback he needed. He hurt people, mostly me, constantly because of the same. Intuniv slowed his body. He still does headstands until he falls asleep (movement), but everything is a bit less, and now he can play LEGO and do puzzles occasionally. And the anxiety went down. Unfortunately, Intuniv doesn’t seem to target his low working memory/inattentiveness at all, so schoolwork is getting harder and harder the older (and harder) it gets. I’ve begun conversations with his psychiatrist about ways to address this. 

Youngest is straight-up hyperactive type. That child can hike for 4 hours, swim for 3, ride his bike for 2 hours, and still be running around the house like a wild man. Add in anxiety and it was crazy. Intuniv lets him be relaxed (not tired) after 4 hours of hiking and only 1 hour of swimming. So, he still needs a LOT of physical activity, but it’s a more manageable amount. And the anxiety is dropping. He picked up a spider yesterday and showed it to me, telling me all about its anatomy. Usually, he panics in the presence of arachnids. 

Summary: meds are trial and error. What works for one kid might not work for another. Intuniv has a very different mechanism of action. We combined for my DS2 in that brief period where he took both. The ER that my kids take is a nearly 24hr formula. There is an immediate release formula your daughter could try at first. 

[kbutton]

17 hours ago, kand said:

That’s interesting, as dd takes a stimulant and she finds it really helps her anxiety.  That’s one of the primary thing she notices about it. I wonder if it varies with the type of ADHD. 

One of my kids had some signs of anxiety (snippy, irritable), and it totally cleared up with stimulants (as long as he had the right generic--some made him a hot mess). In his case, he's VERY much a person who values competence, and the meds make him able to stifle his impulsiveness and focus so that he can be competent.  

Both of my kids have impulsivity as a primary feature and inattention as probably the second. 

One has ASD as well (level 1), and the other one has dyslexia/CAPD and some medical stuff going on.

 

[Janeway]

I finally caved and asked for medication for my son. The doctor gave him intuniv. At first, he seemed better behaved, but that went away. And he became tired and had no energy and gained five pounds in the first four weeks. We gave it up.

[ktgrok]

2 minutes ago, Janeway said:

I finally caved and asked for medication for my son. The doctor gave him intuniv. At first, he seemed better behaved, but that went away. And he became tired and had no energy and gained five pounds in the first four weeks. We gave it up.

Did you try other meds? As many on here said, Intuniv is very different than say, Adderall, which is different from Ritalin, which is different from Vyvanse, etc etc. 

 

[ktgrok]

For my almost 7 year old his issues that are a significant problem, relating to ADHD (which psych did say he has when we saw her for PANDAS stuff), involve difficulty with workin memory, staying on task, and probably processing speed to some extent (me and the kids all have issues with processing speed, more the boys and me than my daughter). I find that although meds don't directly say they help with processing speed, they help you focus on one thing, which means you are only processing one thing, which is faster than a zillion things. In fact, honestly, for all of us I think half the time it is NOT really a processing speed thing but that it takes a second to switch gears from what we are thinking about to what someone is saying/asking, so it looks like an issue processing but is more an issue of focus. 

So, things he struggles with are daily tasks...so if I ask him to go brush his teeth he will wander away, do something else, and then when I find him doing something else and redirect him he forgets again, and then gets upset because "he forgot!". Which he did, but when that happens over and over all day long with everything from "come sit and eat" to "put your shoes on" to school work, it gets hard on everyone, especially him because he knows people are frustrated with him and he's frustrated with himself. He is a bit impulsive and does some dangerous things as well, but not too bad. Trouble with impulse control like jumping on the furniture, etc, but that's a "meh" to me. 

He has some hyperactive behavior but that is related to his PANDAS, not the ADHD. It is very noticably PANDAS stuff, and responds to ibuprofen. He has some issues with chewing things that is Probably more PANDAS as well, and the worry is that stimulants may make PANDAS tics and OCD worse. However, that's gotten so much better (other than one recent flare after illness), so right now my only real concern with stimulants is appetite, as the remaining PANDAS issue is he just hardly eats. Rather, he will eat, but only a very short list of foods. Thankfully, his best and biggest meal is in the morning, so if we could time meds for after breakfast that would help. The rest of the day he will eat apples, carrots, and Luna protein bars. Sometimes a few chicken nuggets or french fries, but often not. Sometimes baked beans, but those seem to have fallen out of favor as well. 

[Janeway]

6 minutes ago, Ktgrok said:

Did you try other meds? As many on here said, Intuniv is very different than say, Adderall, which is different from Ritalin, which is different from Vyvanse, etc etc. 

 

We asked for other meds and she just wanted to add more meds to the intuniv. I am going to call and ask again if she will please call in something different.

 

[ktgrok]

1 minute ago, Janeway said:

We asked for other meds and she just wanted to add more meds to the intuniv. I am going to call and ask again if she will please call in something different.

 

Be prepared to have to go in again, with the tight federal restrictions on these drugs they have their hands tied to some extent about that. I believe a med change requires an office visit. WE have had an insurance lapse and I tried to have my vyvanse script changed to Adderall XR since it is 10 times less expensive, but it would require an office visit, which given I have no insurance this month would be another big expense and kind of defeat the purpose. So holding out until new insurance kicks in on the 31st. Sigh. 

[BlsdMama]

On 7/27/2019 at 5:45 PM, WendyAndMilo said:

Somewhat OT, but how long would you give non-med remedies a chance before trying meds?

This is hard for me because kids are so different.  It was *really* obvious that DS (now 20) was hyper ADHD.  It didn't bother me and he was the second so I was comfortable with school in small spurts with heavy physical activity and not sitting to do school, etc.  That stuff made it so we had a good relationship and he was academically "successful" from the point of view though we were delaying a lot of formal academics such as reading because he was really struggling there, which we now know was dyslexia, diagnosed at 14.  But we never did meds.

With DS 2 (now 14.5) we started seeking solutions.... I don't know that I would have done meds immediately.  His diagnosis came about 6 years ago - it was right before we left Oregon 5.5 years ago.  He would have been almost 9.  We weren't seeing the full picture of sullenness, opposition, frustration, anger, etc.  But I SURELY should have done it before age 11.  


 

On 7/27/2019 at 6:57 PM, BooksandBoys said:

Just wanted to mention that we briefly tried  stimulants for our DS2 (ASD, adhd combined, severe anxiety which borders OCD at times when he’s very severe). Stimulants were a disaster for him (increased anxiety, aggression, anger, you name it), so he ended up on an atypical ADHD med (Intuniv ER) which actually both slows his body a bit (targeting that hyperactivity), and also has a very nice anxiolytic effect. It took a bit longer to see the reduction in anxiety, but it was wonderful for him. 

With DS3 (almost 6), we didn’t even try traditional stimulants due to his anxiety. We went straight to Intuniv (they both take the generic, guanfacine). Again, a nice, mild anxiolytic effect. And Intuniv doesn’t reduce appetite, which is very important with DS3. 

Our second doctor (first being a neuropsych) told me up front that we were going to do trials with both meds and amounts.  It was unlikely we would find a solution right out of the gate and we'd need to work with him to tweak until success.  We were unusual, I think, in that Concerta was like the magic pill for us.

I laugh when people say zombie.  DS WITHOUT meds is like a zombie - far less communicative, seeks screens, doesn't want to do anything anyone suggests, simply wants a fight.  ON meds?  The kid is CRAZY functional - school work, chores, working outdoors, cooperating with siblings, talking and interacting well with me.  I really wish ya'all could spend two days with me - one on meds and one without.  It is like interacting with two different people.

We did run into some lost weight.  He has to eat breakfast BEFORE taking a pill, then barely eats for lunch, and then is RAVENOUS for supper and then he knows to get back out of bed after tuck-ins and eat more food.  He's hungry again by then, making up for lost calories through the day and it's the most successful way we've found to have him keep putting on weight.  He is *very* fit and so using those calories throughout the day, he's building muscle all the time - needs a lot of extra calories to make up for non-appetite of being on meds.

[Janeway]

4 hours ago, Ktgrok said:

Be prepared to have to go in again, with the tight federal restrictions on these drugs they have their hands tied to some extent about that. I believe a med change requires an office visit. WE have had an insurance lapse and I tried to have my vyvanse script changed to Adderall XR since it is 10 times less expensive, but it would require an office visit, which given I have no insurance this month would be another big expense and kind of defeat the purpose. So holding out until new insurance kicks in on the 31st. Sigh. 

Is there a medication you recommend I ask her to let him try?

[ktgrok]

17 minutes ago, Janeway said:

Is there a medication you recommend I ask her to let him try?

I think Adderal XR is the most commonly used? But I'd discuss symptoms with her, and let her talk to you about it. 

[mamakelly]

On 7/27/2019 at 3:41 PM, StellaM said:

I once had a tutoring student with inattentive ADHD. 

The way he explained it to me was that his brain was playing a hundred different movies, at the same time. And he could be trying to listen to me, but suddenly he would find that he was watching one of those hundred movies. But not even long enough to enjoy it, because hey, now he was watching another movie, and another movie, and another and it was all jumbled and noisy and now he doesn't even remember what I just asked him to do. 

Wow, this is almost exactly how my husband describes himself. I've never heard anyone else use almost the exact same verbage. He says that he can't stop the movies, they just keep playing all day and night. He was given an ADHD diagnosis many years ago but we were unable to find a med that worked for him. He's currently doing a barrage of testing again, with a new neuro psych who seems like she will be much better equipped to give him meds. This is super encouraging. 

Edited July 30, 2019 by mamakelly

[ktgrok]

Was able to pick up short acting Adderall today, and hopefully can get my Vyvanse tomorrow. (short acting Adderall,with discount from goodrx, is cheap enough without insurance. Vyvanse has to wait until new insurance kicks in tomorrow). 

Life is SO much better on meds. Optimistic, able to prioritize, better able to empathize with others (hard to consider other's feelings when you are thinking about 15 other things already), etc. And no, caffeine is NOT the same thing. At all. Trust me, I've been trying, lol. And now have ulcer symptoms from the past week of too much coffee and no meds. 

Edited July 30, 2019 by Ktgrok

[BooksandBoys]

11 hours ago, Ktgrok said:

Was able to pick up short acting Adderall today, and hopefully can get my Vyvanse tomorrow. (short acting Adderall,with discount from goodrx, is cheap enough without insurance. Vyvanse has to wait until new insurance kicks in tomorrow). 

Life is SO much better on meds. Optimistic, able to prioritize, better able to empathize with others (hard to consider other's feelings when you are thinking about 15 other things already), etc. And no, caffeine is NOT the same thing. At all. Trust me, I've been trying, lol. And now have ulcer symptoms from the past week of too much coffee and no meds. 

 

Hooray!!!

[easypeasy]

I didn't read the responses purposefully (I don't want to read any "when it goes wrong stories" at the moment, and thought there were likely some of those responses from people's own personal experiences...).

My oldest kid struggled with keeping focused for years. We merely adjusted our homeschooling schedule/methods in whatever way would best serve her and moved along. When she hit 15, some hormonal changes amplified her anxiety and attention issues - and we still plugged along on our own. I was leery to start her on medications because I'd heard so. many. horror. stories. She is incredibly intelligent, and I think that is the only thing that allowed us to mask/ignore the larger issues - sheer will and brainpower.

Fast-forward to her college years. She is doing well academically, but oh, my, is it a struggle for her to manage her time! She spent over two and a half years struggling mightily. Finally, she went to the doctor midway through this most recent spring semester (junior year) and they started her on a very low dose of something for anxiety.

Immediately, there were positive results, but subtle. She wasn't sure if it was a placebo effect, or what, so we were cautiously optimistic. The doctor adjusted the dose (increased it slightly) and dd felt even more stable. She's been home for the summer and has now been on the meds for about 4 months, and oh MY. My, my, my. The change is dramatic. She's efficient, happy, energetic, excited, focused, FAST. She is making checklists AND completing the tasks. She is making phone calls (she has serious phone anxiety, but you wouldn't know it the last few weeks). She's knocking stuff out and I am so proud of her.

I could weep. And, sometimes, I do weep because I feel so incredibly guilty for not taking her in when she was 15 years old & things became so difficult for her. It just became a "new normal" and I couldn't see it clearly. She's lost out on so much time (things just take her forever to do and so much effort to stay focused and she has been so tired).

She's about to head back to college for her senior year and I am so hopeful that her senior year will be what her freshman-junior years should have been. She's spent so much time isolated from her friends and holed-up, desperately trying to focus on her homework - and this year she's looking forward to study groups and reading by the pool!

[ktgrok]

And I got my Vyvanse today!!!!! YAY!!!!!!!!

The short acting stuff works okay, but I get a headache each time it wears off, which can be several times a day if I take it multiple times a day. No bueno! This gives me a nice 12 hour(ish) dosage, with no headache. 

[Ottakee]

1 hour ago, Ktgrok said:

And I got my Vyvanse today!!!!! YAY!!!!!!!!

The short acting stuff works okay, but I get a headache each time it wears off, which can be several times a day if I take it multiple times a day. No bueno! This gives me a nice 12 hour(ish) dosage, with no headache. 

My son takes vyvanse.  He is up to 30mg which is low for an adult but we are very cautiously going up.

[ktgrok]

25 minutes ago, Ottakee said:

My son takes vyvanse.  He is up to 30mg which is low for an adult but we are very cautiously going up.

My son takes 30mg as well. I take 40mg, but started at 30mg and that was fine for about 6 months. I don't see me going over 40mg, but I do have a script now for short acting adder all to take in the evening if I have stuff I need to do that requires brain power after the vyvanse wears off. (aka - writing deadline, etc)

[Lady Florida.]

I'm happy you came around and that it's working for you. My hope is that parents will not use medicine as a last resort when a brain condition is involved. 

[ktgrok]

So, as a heads up...if your kid (or you) ever go off meds for a bit, when you go back on they will hit harder and for longer. Or at least that happened to me yesterday. I didn't realize the impact my normal dose would have after being off for  a week, and then I also took it much later than usual, and had a bigger size of coffee in the afternoon than usual, and with all that was up until 3am, when I finally took a single capsule of over the counter sleep aid and applied some lavender oil to my pillow. So, don't do that, lol. 

[PeterPan]

5 minutes ago, Ktgrok said:

So, as a heads up...if your kid (or you) ever go off meds for a bit, when you go back on they will hit harder and for longer. Or at least that happened to me yesterday. I didn't realize the impact my normal dose would have after being off for  a week, and then I also took it much later than usual, and had a bigger size of coffee in the afternoon than usual, and with all that was up until 3am, when I finally took a single capsule of over the counter sleep aid and applied some lavender oil to my pillow. So, don't do that, lol. 

Have you tried tyrosine to smooth it out? 

[ktgrok]

3 minutes ago, PeterPan said:

Have you tried tyrosine to smooth it out? 

No, I think I'll start by taking it first thing in the morning, instead of at noon, and not double my afternoon coffee, lol. I've done both those things in the past without an issue, but NOT at the same time, and not when first back on the meds. Just me being dumb.