Inattentive adhd treatments/meds?

[workingmom]

We’ve realized that dd 9/(5th grade)has the symptoms of inattentive adhd. (We did the preliminary screening and consult) We’ve done a lot of the executive function skills training over the end of last year and summer, It’s really not sticking. Any other behavior modifications/strategies? Dh is opposed to meds bc of the unknown and possible triggering of future issues. However I’m in favor of atleast trying the meds for a short time to see what the upper potential could be with meds and work there with behavior/strategies. 

Any other suggestions.

[PeterPan]

The bipolar, aggression, etc. with stimulant meds is pretty predictable if you run genetics. So end the vague worry about what might be and actually find out. Even family history (someone in the family with bipolar or schizophrenia) won't decide that reaction, because the particular dc MIGHT NOT HAVE GOTTEN THE GENES. Also, the meds clear the system exceptionally quickly, with a very short half-life. Now on a teen, they're going to start with an extended release med. But if it really, really worries you, sure do a 4 hour dose for the first few weeks.

My dd's ACT scores increased by 50% seemingly overnight on meds, taking her from no scholarships to TOP scholarships. We dealt with that parental division of opinions, and finally I just did it. If someone has anxiety, treat it. You're not going to make anxiety happen, but sure there might be anxiety in the kid on top of the ADHD and you have to treat it. But to avoid meds because you're worried about what might happened, well pin that down, exactly what you're worried about, exactly how you know if that's a probable reaction (run genetics), and what the response would be if that happened. The half-life of the meds is a known thing.

It takes months to get ADHD meds through a ped, because they usually have some hoops. If you start now, it could easily be 3-6 months. Has she had full psych evals? Was your screening/consult with the ped or a psychologist? If it was with a ped, then yes she should have a full psych eval. 

36 minutes ago, workingmom said:

However I’m in favor of atleast trying the meds for a short time to see what the upper potential could be with meds and work there with behavior/strategies. 

So you mean like put the leg on the amputee and then ask how fast they can hop without? LOL No seriously, I think you are RIGHT ON here about trying the meds. But the yank and go back to behavioral is not necessary. You can drop them in the summer, on the weekends. Nuts, she probably only does 4 hours of work a day, so you use a short-acting, it wears off, and she's back to her native, awesome, hyper-active self. 

I LIKE my dd off meds, so I'm cool with that. My dd does NOT LIKE herself of meds, so she's not cool with that. So you're asking the right questions, and you have the responsibility as the teaching parent to cast a weighted vote here. You teach her, you're seeing what's going on, you're in the loop. But I think the concerns of the other parent could be allayed if he'd get more specific and run genetics. And with a short-acting med where you track responses carefully, I think you'll know quickly if there's an issue. 

What happens if she's on caffeine? You only need a teeny tiny dose. Like seriously, for her size you almost can't get it that small. There are charts online for dosing caffeine for ADHD and for my teen dd at adult size it was like 1 tablet of No Doze. She probably weighed 160 because she was tall. For my ds, the dose was so small I was looking at things like the little chocolate chews that had tiny amounts. If you give her more, you're stimulating her overall with too much. Half life of caffeine is very short too.

Someone else has been saying sudafed is similar in effect, but I don't have data on that. For such a small person, it would be safer to have prescription meds, properly dosed, maybe just a 4 hour for now.

Have you had her hearing checked? OT eval?

[PeterPan]

53 minutes ago, kand said:

Pharmacogenomics

So I'm skirting that, because from what I can tell that's the case that the companies doing the genetics to predict responses to psychiatric medications are not nailing it. But I think it's really simple too, that they're looking at the wrong genes. Like I was looking at Genesight, and they spent too much time on metabolism rates and not enough time on the methylation cycle, which is where I'm saying the response issues for the stimulant meds lie. 

And yeah, for Genesight, I was looking for practitioners in multiple states and basically nobody listed was actually using them.

[Heathermomster]

Was the preliminary meeting and consult performed by a child psychiatrist?

I ask because a child psychiatrist manages meds for attention and mental illness.  If the possibility of triggering mental illness is a concern, work directly with the professional who is trained to deal with that sort of issue.

I’m curious to know what EF skills training looks like with a 9 yo.  Also, has your child been evaluated by an OT and are there other SLDs present?

Edited August 22, 2019 by Heathermomster

[PeterPan]

53 minutes ago, CuriousMomof3 said:

Can you provide a link that supports the idea that genetic testing can predict which individuals will have mood destablization on stimulants?  I can't find anything that supports that, but you've clearly done more reading.

Look, are you actually wanting to know or are you wanting to argue. I have tomatoes to can and don't have time to argue. If you want to know, we've already had scads of threads on methylation and genetics and bipolar and schizophrenia and aggression and everything else and you can google search the boards to find it. You run genetics, run the raw data through KnowYourGenetics.com and promothease, see what's going on. The stimulant meds are methyl donors. Caffeine is a methyl donor. There are a number of genes they look at and the mix can be complex. We've already had tons of threads on it. 

We stabilized my ds' significantly aggressive behaviors, that were literally tearing up my home, using genetics. 

[PeterPan]

6 minutes ago, CuriousMomof3 said:

  Regular pediatricians should not be writing initial prescriptions for these meds.

Hogwash. Around here pediatric p-docs are $350 an hour and the pediatrician is $90. You have to be seen multiple times to set up and every 3 months after that. While it might be IDEAL to receive that level of care through a p-doc, it's financially impossible for many people and not even AVAILABLE in many areas. I live outside a major city in my state and we have a complete deficit of pediatric pdocs. On our local support group lists people (who have more complex situations, who need that level of care) are constantly looking for pdocs prepared to handle complex kids. 

Edited August 22, 2019 by PeterPan

[kbutton]

5 hours ago, CuriousMomof3 said:

Can you provide a link that supports the idea that genetic testing can predict which individuals will have mood destablization on stimulants?  I can't find anything that supports that, but you've clearly done more reading.

I will say that the kids I've seen who have had the most dramatic poor responses to stimulants, have been kids who showed symptoms beyond typical ADHD symptoms before the medication was started.  They were kids who were given the ADHD label, but never fit particularly well in that box, and who needed a lot of support before the medication trial. (e.g. the 5 year old who has a 1:1 aide in a self contained special education setting, the 8 year old who can't be left alone with a sibling long enough for a parent to use the bathroom, due to safety concerns).   Generally, these were kids for whom impulsivity was an enormous problem.  

I think you are asking for something more direct than what Peter Pan is talking about. 

Your anecdotal evidence is very different from what I've seen, but I am not talking about kids in a self-contained spec ed setting, though a couple I know belong in a class like that and aren't receiving that help.

• Impulsivity is a symptom of ADHD. I am not sure if you mean to imply that it's not, but it sounds like you are implying that it is not.
• Nearly all of the most dramatic results I've seen with medicating ADHD are in kids or adults who are impulsive--it's life-changing. Concerta is well known for helping with impulsive behavior. I think Vyvanse is also pretty good with that, and if impulsive eating is part of the problem, it's a known thing that it helps with that.
• I know kids that are MUCH SAFER because they are using ADHD meds--kids that can't be left alone. Some kids that cause safety issues for others.
• Not everyone gets help trying multiple meds when they don't find the right one the first time. Some people simply have poor access to doctors that will work with them or just don't know it can be better. That definitely messes up people's anecdotal data.
• I know quite a few people with more psych diagnoses going on than just ADHD (bipolar, etc.), and they have extremely good results with meds. Some are managed by pediatricians and some are managed by psychiatrists. 
• Some pediatricians are stellar at managing ADHD meds.
• I think it's hard to generalize things from a self-contained classroom to the general population. I have learned a lot from people whose kids fit that category (especially in the autism realm), but many of the people I know whose kids are in self-contained classrooms have unidentifiable conditions behind their learning issues. When you start throwing ID into the mix, brains get really diverse quickly, and a lot of people don't have a definitive diagnosis explaining why they have ID. There are almost always variables that make that difficult.  
• In a school setting, some kids don't have diagnoses, they have scores that qualify them for services. I knows families whose kids were identified at school and have had basically zero private testing. As their kids age, they are finding that they don't have great explanations, and that their testing is not even aligned with DSM shifts. That makes it awfully hard to compare data and locate diagnosis or population-specific resources. Even if their kids got great academic support in school, it doesn't always translate to life stuff, unfortunately, and then they have to start diagnostic stuff all over again with adult kids. Maybe your experience is different, but locally, the older kids I know are in that boat, and the schools were okay with that. It's changing--schools are feeling more of a duty to get parents the resources they need such as documentation that will help kids get DD services, and they are realizing that being more specific can help with that.

That said, there are kids with ADHD-ish symptoms that don't respond to meds. It's true. I don't think that there is a hard and fast rule for how to identify those kids, but I do think that overemphasis on that sort of concern absolutely keeps people from trying meds that could be really helpful.

4 hours ago, PeterPan said:

Look, are you actually wanting to know or are you wanting to argue. I have tomatoes to can and don't have time to argue. If you want to know, we've already had scads of threads on methylation and genetics and bipolar and schizophrenia and aggression and everything else and you can google search the boards to find it. You run genetics, run the raw data through KnowYourGenetics.com and promothease, see what's going on. The stimulant meds are methyl donors. Caffeine is a methyl donor. There are a number of genes they look at and the mix can be complex. We've already had tons of threads on it. 

We stabilized my ds' significantly aggressive behaviors, that were literally tearing up my home, using genetics. 

Multiple kinds of genetics have been referenced in this thread and no has been particularly clear about what they mean until you mentioned this. She's not been on the boards all that long and wouldn't know what you mean without you explaining. I don't think she's arguing. 

[PeterPan]

9 hours ago, kbutton said:

Multiple kinds of genetics have been referenced in this thread and no has been particularly clear about what they mean until you mentioned this. 

See that's the great part about the really vague "something might happen in the future" worry. The opposing parent can say that but op can challenge them to define WHAT they mean. And when we think about it, what's on the list? Addiction? Sure, that could be on the list. Growth problems, appetite loss? But beyond that, it's usually bringing out bipolar, aggression, and anxiety.  Unless the parent means discrimination, military options, etc.

[Terabith]

Yeah, I honestly don't see the downside in trying a short acting med.  Even if the results are HORRIBLE, if you try a short acting stimulant, it's only four hours.  It's seriously a "What's the worst that can happen?" question.  And I say that as someone whose kid went manic on a stimulant.  We tried it; she acted like she was on speed for 3.5 hours.  We never gave it to her again.  I mean, if we have issues when she starts driving, we might look at trying them again, but for us, the worst case scenario is really not all that bad.  I mean, I guess theoretically something really horrible could happen, like a cardiac event or something, but that's extremely unlikely.  I just don't see a downside to trying a med, if you're at all wondering if they might make a difference.  

[PeterPan]

Besides, the people who are vehemently opposed to meds usually have few qualms with their own self-medication with caffeine. 

[Heathermomster]

 

I am not saying this happens to everyone; however, these meds are a little more serious than a trip to Starbucks.

Edited August 24, 2019 by Heathermomster

[PeterPan]

2 hours ago, Heathermomster said:

meds. 

So what was your take on that story? Definitely should have been moving on to a pdoc after the first med. The voices thing is schizophrenia, which means it was completely out of the realm of what the ped could handle. And an 8 hour med for a child as the starting dose??? 

Even pdocs screw up. Like seriously, this happens ALL THE TIME in complex cases. It's why they're complex. I see posts all the time (dealing with autism, complex stuff) where people are like we pulled Johnny off the stim meds he's been on and now he's so much better, Johnny was on the entirely wrong class of med for years, blah blah.

You can have pdocs that are entrenched out and of date and GPs that are conservative and careful. That's what I'm running into, that there's such a range and that the label on the door even isn't a guarantee. That doctor was dangerously irresponsible. 

To me you run genetics, read the tea leaves, look at your family history, think about what makes sense, and get a sensible, conservative, cautious option.

[Heathermomster]

1 hour ago, PeterPan said:

So what was your take on that story?

Even pdocs screw up. Like seriously, this happens ALL THE TIME in complex cases. It's why they're complex. I see posts all the time (dealing with autism, complex stuff) where people are like we pulled Johnny off the stim meds he's been on and now he's so much better, Johnny was on the entirely wrong class of med for years, blah blah.

You can have pdocs that are entrenched out and of date and GPs that are conservative and careful. That's what I'm running into, that there's such a range and that the label on the door even isn't a guarantee. That doctor was dangerously irresponsible. 

To me you run genetics, read the tea leaves, look at your family history, think about what makes sense, and get a sensible, conservative, cautious option.

My take?  The ped psych doesn’t accept insurance...You nailed the situation upthread. 

 

 

[kbutton]

Apparently I missed something. 

I'm trying to fathom waiting to get in to a ped psychiatrist for the vast majority of people...then the follow-ups, etc.

It's hard enough with the pediatrician when everything is going well. Just the timing of when to refill meds--making sure the pharmacy has what you need, has the right generic (or name brand), has them in stock in the right dose, etc. and that are you aren't coming too soon. But because you can't get it early, you are always trying to get there in that two day window of leeway so that you can, over months, build in a few extra doses for when it all hits the fan, and you didn't get to the pharmacy on that one anointed day. But if the pharmacy screws up--you have to use that stockpile, and they don't have to refill the next month's meds on what would've been the original pick up day. You have to wait and use your carefully collected "not really extra" meds that you're saving for a real emergency (traveling out of a town for a funeral, someone is hospitalized, etc.) versus their incompetence. Then try to do all that when a refill is due when you need to be on vacation. You get treated like a criminal who doesn't deserve to have a functional life.

More barriers is not helpful. 

The concerns are real, but they don't apply to the vast majority of people on these meds!!! Honestly, giving a kid their first taste of peanut butter is probably scarier given how many kids are allergic to that. Or getting a -caine drug at the dentist (lots of people allergic to those). The kinds of alarming things that have happened in my family (which includes some people with psych issues and weird medical issues) have been the ordinary things, not trying ADHD meds. 

[lizlatorre]

I'm just going to offer my experience with my dd, without diving into all of the above, hope it is helpful.  She exhibited signs of inattentive ADHD, anxiety, and depression once puberty settled in.  She, her dad, and I talked.  We waited and observed.  At 16, it became too much and so we had her evaluated by a neuropsych (did have to pay for this out of pocket - that was a stretch for us).  Diagnosis of inattentive ADHD with generalized anxiety disorder.  We talked as a family again.  We decided to try daily coffee, exercise, and healty diet.  We also pursued accommodations for ACT and dual enrollment courses.  This combination did the job very well until this past spring, right when she turned 18.  Anxiety ramped up and depression came back.  As she was getting ready to leave for school, time was of the essence, plus she was suffering terribly.  We decided to work with her pediatrician as she knew dd's history and every psychiatrist we contacted had a 2-6 month wait.  The pediatrician put her on a low dose of Prozac, which has helped significantly.  She was able to leave for school as planned this month, and is much improved.

A couple observations as a person with generalized anxiety that doesn't take meds and as a person with many family members with both ADHD and psych issues ranging from mild to severe.  There is no right path for everyone.  Some meds work for some and not for others.  Some do best managing using things like coffee, intense exercise, either alone or in tandem with meds.  DBT training can also be very powerful.  There are some great psychiatrists; unfortunately, in my family's experience, those were few and far between, most have been awful.  There are some GP's who step way beyond their knowledge and try risky things.  There are others who provide excellent psychiatric care and know when a referral is necessary because a case is beyond their sphere of knowledge.  I think that the important thing is to get information, evaluate as a family what is wrong and what is needed, and then make a plan of action based on what is available in your area.  Be willing to alter that plan as needed: no med or intervention works forever.  As the body changes, even as an adult, the approach will almost always have to change.

I hope these thoughts are helpful.  Wishing you the best as you decide on the best treatment for your daughter

'

Edited August 25, 2019 by lizlatorre

[ktgrok]

1. does your DH know the risks of NOT medicating a teen with ADHD?

2. There is some limited evidence that ADHD meds started young actually help preserve brain structure/function so that on scans it looks more like a person without ADHD

3. This class of drug is INCREDIBLY well studied for a very long time, so I don't get the "unknown" thing? These are not an unknown quantity. 

4. If you try them, give them a week or more before making a decision, barring anything horrible. My first few days on meds I felt spacey and actually a bit high from the huge increase in dopamine, and actually had a headache in the area of the frontal lobe, I think from it being used so much all of a sudden, lol. By the third day I called the doctor and asked if I should go on a lower dose, and she said to give it a week to 10 days for my body to adapt. She was right. After about a week the level was perfect, and later I did increase just a bit. I liken it to someone being in a dark room for a long time and coming out into the sunshine. The sun isn't too bright, they just aren't used to it.