ADHD inattentive and reading issues

[FindingMyWay]

I have a 15yo who has been diagnosed with ADHD, inattentive. We have tried several different meds, and while effective, the side effects have been intolerable. He has since stopped taking them. He is currently taking a combination of ginko biloba, fish oil, and caffeine, and it's working well enough that he's satisified with how he feels and is able to focus, except for when he tries to read. He says that he can't focus very long, and also that he has to read a passage a couple  of times to understand what it's saying sometimes. I don't know if that's a focus issue or a comprehension issue. (He's always been homeschooled, learned to read relatively easily in K, used phonics.) What tools are out there that would help with this? I'm wondering if speed reading would help with the focus, but then the possibility of lack of comprehension makes me a little worried to try that. I guess I'm just looking for anything that would help him ... thank you!

[kbutton]

Does he do better with listening than reading? 

I would ask him to narrate things back after listening and after reading. Keep things relatively short. Can he construct the major plot in his retelling? It might take a couple of tries to know how long of a retelling to do (you can give him examples).

Is he able to tell a story from a wordless picture book (the library will have those)?

If he can do those things, it might be attention only, but those are just quick things to get an idea of what's going on.

If he can't do those things, he needs detailed language testing.

It's also possible that he could have some anxiety--it can present like ADHD, particularly the inattentive type. He could have both.

There is also genetic testing available that can help pinpoint what meds or combination of meds will be most likely to work. 

[cintinative]

i don't know if this will be helpful or not, but for my ds, he has a processing issue in addition to the ADD-inattentive and anxiety.

It was impossible for me to tease out myself--an educational psychologist identified it. 

[prairiewindmomma]

He’s 15, so either a freshman or sophomore in high school? There may be a processing issue behind this, but it may simply just be really severe ADHD. You likely won’t sort it out without additional testing AND if it is “just” ADHD, the only thing you really do is just work on note taking or other skills like focusing on beginning and ending sentences of paragraphs to try to get the sense of the material if he can’t track all of the sentences. But, that is not ideal for college where the reading load is higher.

At 15, a lot of remediation time is gone. You’ve got just a couple of years until graduation and adult life. I would really flesh out with your ds what he wants that to look like and where he wants to focus his remaining homeschool time given what appears to be a pretty significant deficit. 
 

Honestly, I have at least two kids who can’t do higher academics without meds on board. No amount of caffeine and supplements could get us there, and we tried, hard. Therapy and occupational therapy couldn’t get us there either. If you haven’t truly tried all of the meds, I would point you back to them. It took several tries to get to a decent place with one kid. I get that there are some for whom meds truly aren’t acceptable—but from my shoes with our experiences—this hasn’t been solvable for us without meds on board. Sometimes the limits are hard and real—which is why one of mine is headed to trade school post-high school.

[FindingMyWay]

11 hours ago, kbutton said:

Does he do better with listening than reading? 

I would ask him to narrate things back after listening and after reading. Keep things relatively short. Can he construct the major plot in his retelling? It might take a couple of tries to know how long of a retelling to do (you can give him examples).

Is he able to tell a story from a wordless picture book (the library will have those)?

If he can do those things, it might be attention only, but those are just quick things to get an idea of what's going on.

If he can't do those things, he needs detailed language testing.

It's also possible that he could have some anxiety--it can present like ADHD, particularly the inattentive type. He could have both.

There is also genetic testing available that can help pinpoint what meds or combination of meds will be most likely to work. 

We do some reading aloud, as well as utilizing other audio sources. He can summarize from audio, and even from short readings. He's just frustrated that reading is not at all enjoyable for him, but that it is rather a whole lot of work.

I have heard of the genetic testing. I'm kind of keeping that in my back pocket, but he's pretty opposed to meds right now. 

[FindingMyWay]

12 hours ago, prairiewindmomma said:

He’s 15, so either a freshman or sophomore in high school? There may be a processing issue behind this, but it may simply just be really severe ADHD. You likely won’t sort it out without additional testing AND if it is “just” ADHD, the only thing you really do is just work on note taking or other skills like focusing on beginning and ending sentences of paragraphs to try to get the sense of the material if he can’t track all of the sentences. But, that is not ideal for college where the reading load is higher.

At 15, a lot of remediation time is gone. You’ve got just a couple of years until graduation and adult life. I would really flesh out with your ds what he wants that to look like and where he wants to focus his remaining homeschool time given what appears to be a pretty significant deficit. 
 

Honestly, I have at least two kids who can’t do higher academics without meds on board. No amount of caffeine and supplements could get us there, and we tried, hard. Therapy and occupational therapy couldn’t get us there either. If you haven’t truly tried all of the meds, I would point you back to them. It took several tries to get to a decent place with one kid. I get that there are some for whom meds truly aren’t acceptable—but from my shoes with our experiences—this hasn’t been solvable for us without meds on board. Sometimes the limits are hard and real—which is why one of mine is headed to trade school post-high school.

What kind of testing would determine if there's a processing issue?

He was diagnosed last year as a freshman, because it wasn't really a problem until then. His reading load became heavier with high school-level material, and combined with Algebra, he was kind of floundering. They did say that he had "mild" adhd. He's planning on attending a local technical college. I know there are a couple of classes that will be difficult because of the density of the reading, but he is very opposed to meds at this point because he hated how he felt when he was on them. 

Edited March 3, 2023 by FindingMyWay

[kbutton]

1 hour ago, FindingMyWay said:

What kind of testing would determine if there's a processing issue?

Testing with psychologist--an educational psychologist or a neuropsychologist. They should do IQ testing, achievement testing, and from there decide what other testing might need to be done. They will not usually do robust language testing; you need a speech language pathologist for that. They should also do some surveys to rule in or rule out anxiety, depression, and a variety of potential mental health issues.

[cintinative]

1 hour ago, FindingMyWay said:

\
He was diagnosed last year as a freshman, because it wasn't really a probably until then. His reading load became heavier with high school-level material, and combined with Algebra, he was kind of floundering. 

This is what happened to us, although a bit earlier--we sort of ground to a halt speed-wise in 8th grade. The reading level was much higher and Alg I took basically two years.  At first I thought it was that 7th/8th grade brain fog but then it became apparent that we were dealing with a lot more than that, so I pursued the testing. He was on medication for ADD-inattentive at this point, so I wasn't sure if he needed a new med, but to me it seemed like there was more going on than just ADD. 

The ed psychologist we used also suspects stealth dyslexia. Since my son is also gifted, it is not unusual for kids like him to do well until they get to the more challenging high school level stuff.  He really never had trouble with reading until then, but we used a phonics-based approach which she says really helped him. 

[PeterPan]

Two points. One, he could have a developmental vision problem, since the major symptom is occurring in reading. You would go to a developmental optometrist to get this checked. Has he ever had an OT eval or been checked for retained reflexes? There are other things that can affect comprehension with ADHD (attending haha, but also language things) but I'm just gonna put money on vision here.

Two, you might want to re-examine this issue of "side effects" of the meds. Who determined them and what were they? If he has a COMT defect, the methyls in the stimulant meds could make him feel more irritable. If he has undiagnosed anxiety, that could *reveal* when he takes the meds. However I think it's lacking perspective to have a 15 yo who is naive to meds decide on his own what he does/does not want to take without significant pushback. I remember asking a dc that age if he "liked" his meds after he had been on them a while (maybe 6 months, I forget). I had met this dc pre-meds and he had SEVERE ADHD. This dc did not go oh yeah, I love them, I can finally do everything I wanted and it's AWESOME. No, the dc kinda sat there and hedged.

Reality is nobody likes their brains changed and we like who we ARE. We accept ourselves as we are and we love ourselves. Now maybe someone around us has taught us to resent our neurology and bents, but most people in general like themselves and even love themselves. I LOVE my dd off meds. Seriously. I like ADHD straight and it doesn't bug me. So to me, put someone on meds and it's like what is this, I liked you before. That's not a side effect. That's just a different way of existing. 

Caffeine is not a stable way to get their dopamine up and it does not activate as many parts of the brain as the meds. It's also addictive, something he may come to regret. With the short half life (only a few hours), he may find himself needing to take it over and over. Now maybe he's a slow metabolizer (which would be in the genetics) and it has more hang time for him. But just in general, a time release med would give him a more consistent all day effect to protect his driving and his ability to work and do his school work.

But like you say, many, many people self medicate with caffeine. I'm just surprised he's not having "side effects" from the caffeine as well. It's why I would go back and question the side effects. It's possible that the dose was TOO LOW and it was wearing off. It's possible he wasn't used to his brain feeling that way and needed to give it some time. It's possible the meds were revealing another co-morbid issue (anxiety, vitamin deficiencies, etc.), not causing it. It's always good to run genetics and see what you're dealing with.

Psychiatric/DSM diagnosis is very imprecise and not biology based, so there are issues. We had a poster here whose ds had sustained attention scores go DOWN on ADHD meds. Clearly there was some more complex chemistry there that genetics might show. The DSM is just a very blunt hammer tool and not always the flashlight we need.

You have a very small window here (3 years?) to get these things sorted out. I would suggest getting him checked by a developmental optometrist to make sure that's not part of the explanation. I would take him to an OT who specializes in *interoception* to get his self-awareness bumped up and to check for retained reflexes. Mindfulness and body based mindfulness (interoception) are evidence based practices for ADHD, and working on them may give him more fine-tuned information to advocate for his mental health. 

[PeterPan]

15 hours ago, FindingMyWay said:

learned to read relatively easily in K, used phonics

Given how readily he learned to read, I was moving on from questions like APD and dyslexia that could affect comprehension and language processing. That's why I moved on to vision. But hey, if he has issues with background noise, issues with dichotic listening, poor RAN/RAS, poor phonological processing, then definitely pursue those. Did your psych run screeners for any of that? Look through the tests that were run. 

I mean, we could point you to things on EF and reading comprehension, but it just seems like you haven't nailed the physical/chemical challenges here. But if you think you have and you want to treat it solely has an executive function issue, that's what you're googling is reading comprehension strategies with executive function. They're going to recommend comprehension strategies. My dd would have that if she was not engaged in the material and literally wasn't attending, sure. I'm just hesitant to go there until you've dealt with the physical problems.

[FindingMyWay]

5 minutes ago, PeterPan said:

Two, you might want to re-examine this issue of "side effects" of the meds. Who determined them and what were they? If he has a COMT defect, the methyls in the stimulant meds could make him feel more irritable. If he has undiagnosed anxiety, that could *reveal* when he takes the meds. However I think it's lacking perspective to have a 15 yo who is naive to meds decide on his own what he does/does not want to take without significant pushback. I remember asking a dc that age if he "liked" his meds after he had been on them a while (maybe 6 months, I forget). I had met this dc pre-meds and he had SEVERE ADHD. This dc did not go oh yeah, I love them, I can finally do everything I wanted and it's AWESOME. No, the dc kinda sat there and hedged.

 

The side effects that he had with every med he tried were heart palpitations and shirt-soaking sweating, particularly as it wore off. The other one that was not with every med but was with the time-released one was lack of appetite. He would be hungry, have food in front of him that he loved, and the idea of putting it in his mouth was repulsive. (That's how he described it.) The caffeine is only to get him going in the morning, but he's fine to keep going even after it wears off. 

I am going to take him in for a developmental vision screening ... found some info on that earlier this morning, and we thankfully have a dr nearby. I will look into some of the other suggestions you mentioned. Thanks!

[KSera]

Looking in a totally different direction from the helpful suggestions above, does he spend a lot of time online? Time spent online has been shown to really impact ability to focus on reading longer things. Heck, I’ve noticed that change in myself even. Mine have all been big readers, but one stopped reading for a number of years during heavy internet use, and struggled with college reading during that time. They have recently started reading books for fun again and told me it’s getting easier and easier the more they do it. 
 

We have ADHD inattentive in the mix here as well, but the particular issue with reading focus appears more related to when the older kids started heavy internet use. They had good reading attention before that. 

 There are a ton of articles about this effect. Here are just two I grabbed:

How does the Internet Influences the Readers’ Behavior

The Effect of the Internet on Reading

[kbutton]

1 hour ago, PeterPan said:

It's possible the meds were revealing another co-morbid issue (anxiety, vitamin deficiencies, etc.), not causing it.

This sounds very possible considering the side effects.

1 hour ago, FindingMyWay said:

The side effects that he had with every med he tried were heart palpitations and shirt-soaking sweating, particularly as it wore off. The other one that was not with every med but was with the time-released one was lack of appetite. He would be hungry, have food in front of him that he loved, and the idea of putting it in his mouth was repulsive. (That's how he described it.) The caffeine is only to get him going in the morning, but he's fine to keep going even after it wears off. 

I am going to take him in for a developmental vision screening ... found some info on that earlier this morning, and we thankfully have a dr nearby. I will look into some of the other suggestions you mentioned. Thanks!

Did they start low and go slow or just give him a dose that is typical for his size, weight, and age?

Those are not good side effects. The appetite is an odd presentation--most people just don't want to eat. Being hungry but repelled by food is not consistent with what we've seen or others have seen.

Did they give him and EKG or echo to see if he has underlying heart issues? My son has some underlying issues, but he's fine to take ADHD meds as long as he's taking an effective does of his heart meds. 

We also found later on that he has some anxiety, and when he was treated for anxiety, the remaining ADHD issues that didn't respond to meds disappeared, and he was able to take a lower dose of ADHD meds. 

 

[Storygirl]

I agree with the other posters who have already responded. I'll just add about lack of appetite: this is very common and real side effect that is a bummer. But there are very workable solutions. DS's ADHD medications suppress his appetite, and we've dealt with it for 8 years now. Maybe if you frame it this way to your son -- which is more frustrating to your son, having to change the times of day that he eats, or struggling with focus all of the time? My son eats a bunch of food in the evenings to make up for not eating lunch.

By the way, I agree with Peter Pan that I would not let my teen make blanket decisions about medication, and my DS is extremely oppositional, so we have to work at things like this, and it is one of those parenting things that is NOT FUN. But the stakes are high, so we are willing to make decisions that DS doesn't like. We still help with his medications now at age 18 (which is not ideal, but there are reasons). I know that people parent differently, but I'll just put it out there that sometimes adults have to make decisions that teens don't like (and kids with ADHD tend to be immature in their judgment). When DS doesn't want to take his medication, we require it anyway. Because it is what is best for him.

Hope that's not too preachy, but we've been through A LOT with DS, and sometimes sharing our experiences and opinions can help others.

[Storygirl]

I agree with @kbutton that your description of lack of appetite is a bit unusual.

Usually DS just lacks appetite. Sometimes he will see food and wish that he could eat it. He will just save it for later. It's possible that in the beginning, this would make him feel sad, but knowing he can eat it later got him through.

I wonder when your son said he was "hungry" he just meant that he wished he could eat the food, not that his body was feeling hungry.

[kbutton]

3 minutes ago, Storygirl said:

I wonder when your son said he was "hungry" he just meant that he wished he could eat the food, not that his body was feeling hungry.

That's a good point. 

[Storygirl]

The other thing for you and your son to consider is not just thinking about getting through school Right Now. But that he needs to develop strategies that will help him Forever. He will need to function well in real life and may find that the ADHD becomes a challenge in non-academic areas. Like driving. And his employment. So I think the need to improve his reading comprehension is real and important. But, in a way, that is just a symptom of the underlying problem that needs to be addressed. (Assuming there is no reading comprehension disability, which is, a real thing that can be tested).

For the reading comprehension, I second the idea of doing research about techniques that your son can learn to help himself. These exist. The rub is that your son has to agree to learn and use them. My DS has a reading comprehension disability and has been taught strategies that he does not use on his own. It sounds like your son wants to improve and help himself, which is really good! You can capitalize on that by teaching him strategies to use (highlighting text, taking notes, annotating what he reads, reading multiple times, asking himself questions as he reads, etc. -- you can find a bunch of ideas online).

[Clemsondana]

People above have given you all sorts of useful insights.  If you want to do more to explore natural treatments, you might look at the book Healing ADD by Amen.  We got a lot of insight using their clinic, but if you already have a diagnosis you might find that some of their supplements help.  They may not, but it gives you something else to look at.  Even simple things, like their recommendation of tyrosine supplements when doing focus tasks, can make a difference for some people.  

I'm not one of those people who believes that there is a natural solution for everything, but I do think that some people can be helped with the right combination of supplements so I thought I'd toss in another source for you to consider.

[kbutton]

For reading comprehension, we also liked materials from Mindwing Concepts.

For general strategies like what Storygirl mentioned, The Reader's Handbook is really good--it's widely available used and is inexpensive. I think red is middle school, and then darker blue is high school, but you might have to dig a little to get that information as it's not on the cover. At his age, both have something to offer. 

https://www.amazon.com/Great-Source-Readers-Handbooks-Softcover/dp/0669488577/ref=d_pd_vtp_sccl_2_1/138-5279729-5500931?pd_rd_w=dae4z&content-id=amzn1.sym.8e065679-52e9-4d16-ae63-fa3d08b93cef&pf_rd_p=8e065679-52e9-4d16-ae63-fa3d08b93cef&pf_rd_r=GCA5S61MTQTT8AXR9C0S&pd_rd_wg=yVGVt&pd_rd_r=3c4ed970-e3d4-4375-93ff-639883128130&pd_rd_i=0669488577&psc=1

 

[kbutton]

Rooted in Language also has good resources--they were not ones that worked particularly well for me to implement, but I was starting at an odd point. They are an SLP group, so their stuff is evidence-based. They have parent trainings as well.

https://www.rootedinlanguage.com/ 

[FindingMyWay]

2 hours ago, kbutton said:

Did they give him and EKG or echo to see if he has underlying heart issues? My son has some underlying issues, but he's fine to take ADHD meds as long as he's taking an effective does of his heart meds. 

They started him out low and increased the dose until it was therapeutic. They did not do any testing at any point past the initial diagnosis ... just changed him to another medication with the same side effects. 

Thank you all ... I think my husband and I need to talk things over and see about talking more extensively with his doctor.

[FindingMyWay]

2 hours ago, Storygirl said:

I agree with @kbutton that your description of lack of appetite is a bit unusual.

Usually DS just lacks appetite. Sometimes he will see food and wish that he could eat it. He will just save it for later. It's possible that in the beginning, this would make him feel sad, but knowing he can eat it later got him through.

I wonder when your son said he was "hungry" he just meant that he wished he could eat the food, not that his body was feeling hungry.

I will talk to him about this, but he's not a kid who loves food anyway, so I don't think it would make him sad not to eat if he wasn't hungry.

[PeterPan]

On 3/3/2023 at 10:07 AM, FindingMyWay said:

heart palpitations

Time to run genetics. Not everything that looks like ADHD is low dopamine. You're wanting info on his methylation.

 

21 hours ago, Clemsondana said:

tyrosine

Since l-tyrosine is a precursor to dopamine, it can be a natural way to raise dopamine. However we're going back to the assumption (without any actual biological/chemical evidence) that the dopamine is low. She needs to slow down and run genetics and find out what is going on. 

The DSM does NOT look at biology/chemistry, only external symptoms. It's like seeing someone bleeding and not asking why and putting a bandaid on it. There's all kinds of pushback because they KNOW the DSM is lumping too many chemistries and underlying causes together, but it's not an issue they've fixed.

On 3/3/2023 at 10:07 AM, FindingMyWay said:

The caffeine is only to get him going in the morning, but he's fine to keep going even after it wears off. 

Did they run labs on his thyroid, b vitamins, etc. before starting all this? Have you explored mitochondrial issues?

Another person mentioned Amen, and he has done quite a bit with brain scans and ADHD. It's something you might look into to become passingly familiar with. I'm not so hot on names (gamma waves, beta waves, etc.), but basically we have sleepy waves and wakey waves. In an anxiety pattern you can have wakey waves staying high, which causes the person to awaken very ALERT. Conversely, ADHD typically/often has high levels of sleepy waves which go even higher at night. They may sleep like logs and they rouse VERY SLOWLY. 

Now there is a theory that neurofeedback therapy can alter brain wave patterns and improve this. Tried it with both my kids to no benefit and some harm, so I'm not saying. Just saying it's a profound issue and possibly the underlying explanation for waking slowly.

So then you can think through whether that's a caffeine issue or an accommodation issue. I'd at least be concerned to know *why* the person is waking slowly (1-2 hours). Blood sugar, thyroid, asthma/low oxygen, mitochondrial fatigue, etc. could also contribute to this. You could be treating informally with caffeine the symptoms of a more important issue. 

I go back to my drum, but at this age you only have a few years till they are out of your house. You want to be less concerned about pragmatic answers (especially with things like caffeine that are addictive and a long term plague) and much more concerned about identifying the underlying causes. 

On 3/3/2023 at 10:07 AM, FindingMyWay said:

he's fine to keep going even after it wears off. 

So he's a very slow metabolizer (genetic) or his dopamine wasn't low to start with. I'm just encouraging you to dig in and figure out what's going on. Does his heart race when he takes the caffeine? Are you using a low dose (dosed specifically to his weight using a particular mg/kg) or is he doing a higher dose like drinking coffee? Does he have any alteration in mood for better or worse? 

 

21 hours ago, FindingMyWay said:

talking more extensively with his doctor.

If this is a ped, you could move out of their expertise pretty quickly. It can be tricky to find a doctor or pdoc who actually digs in on genetics and underlying causes. We FINALLY have a psychiatrist/pdoc who will run genetics, look at methylation and mitochondrial issues, etc. There are other docs who will do this, so it's not limited to one specialty. It's more just who has the acumen and made the effort to learn about it. When you have an unusual presentation, which this is, you need the doctor who has learned how to deal with the less common presentations. 

Running genetics with 23andme is cheap and easy. You then run the raw data through an engine like knowyourgenetics.com and promethease to kick out reports that are easy to read/search. You can also learn how to search the raw data yourself if you're so inspired. They run the same chip, whether you pay for the fancy medical report or the cheapest version, so literally the cheapie $69 sale thing gives you all the data you need. You'll see methylation status and might find all kinds of actionable things. There are also doctors using Genesight, which is NOT a complete survey of everything. It mainly looks at medication metabolism. I'm not saying a doctor or pdoc who uses Genesight is doing a great job at testing and looking at everything else, but it's a place to look. There's a lot it doesn't show but the pdoc we're trying now uses Genesight AND will discuss the other things. Some pdocs we called were using only Genesight, which isn't enough info.

Sorry, that was a rabbit trail. 

23 hours ago, kbutton said:

Did they give him and EKG or echo to see if he has underlying heart issues?

Just wanted to bring this down again. We've had multiple people on the boards now who had heart issues flare up with meds who actually had heart problems that needed to be diagnosed. Complex kids need complex answers. It's nice that 75% of kids just take the first ADHD med, boom done. That means another % are complex, needing a lot of digging in. They're more than what the ped possibly is going to handle and they're going to need docs ready to dig in on those things. My family doctor won't even TOUCH my ds for meds beyond the basic. Everything else he's says go to a specialist, go to a specialist. 

You want genetics, labs, labs. No more guessing, no more assumptions. And for the love of all that is good, holy, wise, safe, etc., please do not take any supplements till you have labs/data/genetics/evidence of what is going on. I'm ALL FOR supplements, vitamins, etc., but they are medicinal and can have profound effects. Get some data, find out what is going on.

21 hours ago, FindingMyWay said:

I will talk to him about this, but he's not a kid who loves food anyway, so I don't think it would make him sad not to eat if he wasn't hungry.

How long did the feeling of food being repulsive last? Is it possible he was feeling nausea?