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Meds or Evals? Or would both be possible? (Update)


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*****Update down thread*****

Ds is 7.5yo and has always been homeschooled. He's great at math but not yet reading on his own (though he loves to be read to). He knows all of his letter sounds, blends and some digraphs and trigraphs and can write them all but doesn't write spontaneously. He loves word play and sound games and rhyming. But he just cannot or will not read on his own.

We thought maybe dyslexia but his doctor doesn't think that's it after questioning him and having us fill out some screening forms. She told us he scores high on the screening for ADHD inattentive and hyperactive and mildly positive for Oppositional Defiant Disorder. None of that is surprising to us as we kind of suspected as much. She said she could prescribe meds for him or we could get psych evals, our choice. (He has now interrupted me 5 time since I started writing this despite being told to go outside and play.)

Before covid I would have been all about getting the evals done but with everyone going to bare bones schedules or video appointments, it could be a long time and a not so great screening appointment if it is not in person. Dh and I are simultaneously worried about meds making him a zombie and how long we can continue with his lack of self control. Neither of us can decide if waiting for evals is better or just taking the meds is better for now and maybe do evals at a later date.

Our doctor is great and really will do whatever we want to do within reason so no worries there. So those who have been there done that, what would you do if you were in our situation?

Edited by sweet2ndchance
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2 hours ago, sweet2ndchance said:

But he just cannot or will not read on his own.

Does this mean he can't read words at all or that he doesn't read for pleasure?

If he doesn't read for pleasure, it means that reading is not yet easy enough to be pleasurable.  If he reads aloud when you're sitting with him, add fluency readings to your day.  Get books that are well below his reading level that he can read easily.  Have him read this material aloud to you for 20-30 minutes per day (you will probably have to work up to this amount of time).  Then gradually increase the reading level of the books.  

2 hours ago, sweet2ndchance said:

We thought maybe dyslexia but his doctor doesn't think that's it after questioning him and having us fill out some screening forms.

An MD isn't necessarily qualified to make a dyslexia diagnosis.  Also, dyslexia can exist alongside ADHD or even cause kids to seem like they have an attention problem when they don't.  Also, contrary to popular lore, stimulant medication for ADHD will help *anyone* with attention, and it can also appear to help dyslexia because it can give a boost to working memory.

Here is an app that was designed by the Eides (dyslexia experts) that screens for dyslexia.  It is far cheaper than a psych eval.  

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7 minutes ago, EKS said:

Does this mean he can't read words at all or that he doesn't read for pleasure?

If he doesn't read for pleasure, it means that reading is not yet easy enough to be pleasurable.  If he reads aloud when you're sitting with him, add fluency readings to your day.  Get books that are well below his reading level that he can read easily.  Have him read this material aloud to you for 20-30 minutes per day (you will probably have to work up to this amount of time).  Then gradually increase the reading level of the books.  

An MD isn't necessarily qualified to make a dyslexia diagnosis.  Also, dyslexia can exist alongside ADHD or even cause kids to seem like they have an attention problem when they don't.  Also, contrary to popular lore, stimulant medication for ADHD will help *anyone* with attention, and it can also appear to help dyslexia because it can give a boost to working memory.

Here is an app that was designed by the Eides (dyslexia experts) that screens for dyslexia.  It is far cheaper than a psych eval.  

He can sound out words with any of phonograms he knows (He knows most of them, maybe 60 - -70% of the phonograms)  but getting him to do it... an act of congress would be easier some days. He avoids avoids avoids reading anything unless he is forced to read it. But when he is forced, he can do it. He can literally make it take an hour or more to read a few pages. He is distracted by everything. Whines about it being too hard even though he can do it when it comes down to it. I'm constantly redirecting him to the task at hand. But he can read and manipulate numbers and do math with very little redirection but still very distractable. I don't get it. He is also very distractable in his play, constantly jumping from one activity to the next without finishing any of them.He also shows prefectionist tendencies and doesn't even want to try things that he isn't 100% positive he can be successful at even if he has been successful at it in the past or we reassure him that we will help him and that it is absolutely ok and expected to make mistakes, that's how you learn. Nope, he's not having it if he thinks he can get out of it (which he thinks that most of the time)

I just had him read me the following fluency passage (well below what he can read) 

I have a cat.

She is on a mat.

The cat is tan.

My tan cat is bad.

She has a rat.

I see the rat on the mat.

I had to keep reminding him when we see capital I by itself, it says its long sound (he knows this and has known it for a long time). He melted down on the second sentence which took about 10 minutes to redirect him. After the 4th sentence he wanted to know why the cat was bad, more redirecting him back to reading the passage. After the 5th sentence he disagreed that catching a rat was bad if you are a cat because that is what cats do... had to redirect him. He freaked out because the last sentence was long. I told him yes it is longer than the others but I only see one word that might be a tricky word for for him (on but I didn't tell him which word I thought might be tricky for him. I only thought it would be tricky because part of the meltdown in the second sentence was because he insisted that "on" was "not" until I forced him to sound it out. He surprised himself by reading the whole last sentence without tripping over any of the words.

That was actually one of his better attempts at reading a passage. He read the whole thing accurately in the end but with way more redirection and correction than any of my other kids ever needed. Even my late reader (couldn't read fluently until 9.5yo), once he had the working memory to work on fluency, didn't need that much redirection. At 7.5yo my late reader didn't even know the letter sounds solidly so I can't really compare.

I took a look at the dyslexia app and it looks like it is only available for Apple products at this time. We don't own Apple anything so we will have to wait for an Android version.

I'm not sure I understand what you are saying about ADHD meds. Are you saying we should consider trying them because it can help anyone or that it will appear to help without actually addressing or finding out the actual problem?

Thanks for taking the time to reply, it has given me some things to think about.

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22 minutes ago, sweet2ndchance said:

I'm not sure I understand what you are saying about ADHD meds. Are you saying we should consider trying them because it can help anyone or that it will appear to help without actually addressing or finding out the actual problem?

I'm saying that if you try ADHD meds and they work it doesn't mean that he has ADHD.  

24 minutes ago, sweet2ndchance said:

I had to keep reminding him when we see capital I by itself, it says its long sound (he knows this and has known it for a long time). He melted down on the second sentence which took about 10 minutes to redirect him. After the 4th sentence he wanted to know why the cat was bad, more redirecting him back to reading the passage. After the 5th sentence he disagreed that catching a rat was bad if you are a cat because that is what cats do... had to redirect him. He freaked out because the last sentence was long. I told him yes it is longer than the others but I only see one word that might be a tricky word for for him (on but I didn't tell him which word I thought might be tricky for him. I only thought it would be tricky because part of the meltdown in the second sentence was because he insisted that "on" was "not" until I forced him to sound it out. He surprised himself by reading the whole last sentence without tripping over any of the words.

From your description, it sounds as though this passage was above his fluency level, though it would be difficult to find a passage that was at a lower level.   That said, it's great that he was engaging with the text with the comment about the bad cat.  It means that he had enough resources left over to comprehend what he was reading and form an opinion about it!

Have you had him evaluated by a developmental optometrist?  It could be a vision problem.  I'd rule that out before trying meds.

Also, have you read the book Overcoming Dyslexia?  The lists of symptoms in it are very helpful.  

With regard to your initial question about reading for pleasure--in order to read for pleasure, not only does reading need to be easy enough, it needs to be at a high enough level to be interesting.  Since his reading isn't fluent enough to deal with short sentences containing only CVC level words, the books available to him are going to be very dull. 

I'd assume that he has dyslexia and deal with his reading accordingly.  If things don't start coming together in the next 6-12 months, you might want to see about adding meds.

 

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We've done both meds and psych evals, in different orders with very different kids. In you son's case, I think it comes down to whether you truly believe he has ADHD. If so, I would start meds now and pursue evals whenever a comprehensive in-person psychoeducational assessment becomes possible in your area. If you really don't know whether he has ADHD, or if you have other concerns about things like anxiety, social skills, etc. it might be best to reach out to a psychologist in your area. I wouldn't have your son assessed online, but they may be able to interview you, provide more comprehensive questionnaires for you to fill out, and offer their professional advice. 

My oldest was slightly delayed in reading/writing and eventually diagnosed with ADHD in 8th grade. We were all very confident in the diagnosis, the questionnaires we filled out were "very elevated" for ADHD/executive functioning and we didn't have any concerns about learning disabilities, so he started meds without a full psych assessment. We did take him to a psychologist last year to get a full psych report with recommendations for college, but didn't feel it gave us much information we didn't already know. The most informative tool they used was the BRIEF, a questionnaire about executive functioning, which we filled out for both the pediatrician and the psychologist. In retrospect, I don't think having an assessment any earlier would have made much of a difference for him, but I'm convinced that meds in elementary school would have helped him with reading and writing. With meds, his working memory is on the low end of average and was likely even lower when he was younger. 

My 10yo was assessed at age 7. Our pediatrician had already diagnosed ADHD and offered meds, but we waited for the full assessment because he was also having some tics that we didn't want to exacerbate. That first assessment report is full of comments and caveats about his attention and distractibility and the majority of his scores were described as "possible underestimates of his true abilities". They did diagnose a mild SLD in reading, but recommended reassessment within 2 years once his attention issues had been addressed. We redid the assessment last year, and he was like a different kid. Scores shot up in some areas, stayed the same in others, and we got a much better picture of his specific strengths and weaknesses.

The PAST test is a great screener for phonological awareness difficulties associated with dyslexia. It's wonderful that your son enjoys word play and rhyming, but it might be helpful to screen him for difficulties with more advanced phonological processing skills. https://www.thepasttest.com 

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8 minutes ago, EKS said:

I'm saying that if you try ADHD meds and they work it doesn't mean that he has ADHD.  

Thanks for clarifying, that makes sense.

9 minutes ago, EKS said:

Have you had him evaluated by a developmental optometrist?  It could be a vision problem.  I'd rule that out before trying meds.

I've been trying to get him in to any optometrist since March. Dh and I both wear glasses and at his last eye exam they said he would need glasses but the prescription was so low they didn't want to saddle him with glasses for nearsightedness at the time since it shouldn't affect his school performance in their opinion. We are definitely going to a different optometrist but trying to find one around here who is accepting appointments is little like a needle in a haystack right now. I'll have to check and see if the university hospital has a developmental optometrist. We have to take dh there anyways to see his neurological optometrist.

 

23 minutes ago, Megbo said:

It's wonderful that your son enjoys word play and rhyming, but it might be helpful to screen him for difficulties with more advanced phonological processing skills.

He very much enjoyed the test you linked lol. He scored right where he should be, late first grade/early second grade.  Most of his mistakes I could directly tie to his speech issues. But the bigger issue was getting him to stop moving and wiggling and keeping his attention. He was distracted by the dog, by a bird outside, by the dog again, just randomly got up and started walking around the table, wanted to pretend he was a horse while doing the assessment.... It's those things that make me think ADHD. None of his 5 older half siblings were like that at all. Paying attention for 10 - 15 minutes was no problem at 7.5yo but this kiddo can't seem to pay attention for more than a few minutes to save his life. Bull in a china shop is a phrase we use for him a lot. He does seem to be getting aggravated at his lack of ability to focus and his speech (which we are working on getting him back in speech).

 

 

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You're at a stage where it's easy to make mistakes due to lack of information. So basically, the more information you get, the better this is going to go. Even a psych eval alone will not likely get you enough information to sort out what is going on, because he needs language testing that is typically done by an SLP and occasionally (rarely) done by a psych. Often psychs will just use a one stop shop screener like the CELF. You would benefit from more thorough language testing. 

So it's good that you're getting him back in with a speech therapist. At this point you don't know what part of his behaviors are due to language (yes), ADHD (yes), OT issues like retained issues (yes), anxiety/ODD (yes). It's possible he's flagging for ALL of them, which is why Curious correctly points out that the school system would want EVERYTHING eval'ed. Your doctor is telling you what she needs to do in order to be able to prescribe meds, but that DOESN'T tell you what you need to do in order to teach correctly and intervene correctly for him. That tells evals, and frankly I'd be asking about psych, SLP, and OT. 

For the OT, I'd be looking at midline issues, anything affecting his writing, and retained reflexes. He may have a retained reflex affecting his comfort sitting and just creating the general "4 alarm fire" behavior you've got going. That's what happened with my ds and when we got the retained reflexes integrated he RADICALLY calmed down. This is something that costs you almost nothing (Pyramid of Potential has a $35 video with info) and it could have HUGE benefit.

For the SLP, you'd like language testing, and honestly the issue is that a lot of the times the SLPs don't own the evals. Because the tests are EXPENSIVE, they don't own them to run them. For that age, I'd be asking for a CTOPP, TNL (test of narrative language), and the SPELT (structured photographic expressive language test). So you could use that info to tease apart whether his issues with engaging in the reading process are due to language delays (syntax, vocabulary), narrative language (understanding the flow of the story), or phonological processing. There is a test the SLPs do now that has all that in one. I think it's the TILLS. It's a newer test, and the only way you're likely to get that is if you find an SLP who specializes in literacy. These SLPs exist, so you can look for them. Here's some stuff just to get you started https://www.smartspeechtherapy.com/?s=dyslexia+testing

37 minutes ago, sweet2ndchance said:

Bull in a china shop is a phrase we use for him a lot.

This is back to the OT thing. There are serious questions there about his ability to modulate, to realize how he's feeling, etc. etc. Basically in a school it's the OT's job to get that dc's body in ready to work. So when the dc is a "bull in a china shop" it's their job to get him back to where he can actually work. And there can be a bunch of components there.

38 minutes ago, sweet2ndchance said:

I'll have to check and see if the university hospital has a developmental optometrist.

Yeah, if he needs glasses and doesn't have them, don't do reading. You don't have to work on reading to improve reading. You can do read alouds and work on narrative language. You can do oral spelling. You can play games with phonological processing. You can work on sentence expansion (Killgallon), do grammar work, or meet him where he is for syntax and vocabulary. He can listen to audiobooks while he plays. Any of those things will also improving his reading while not taxing his eyes. 

5 hours ago, sweet2ndchance said:

mildly positive for Oppositional Defiant Disorder.

https://jessicaminahan.com/publications/  Resources. Until you get the underlying anxiety issues dealt with (via structure, meds, cognitive strategies, etc.), you're going to be plowing uphill.

5 hours ago, sweet2ndchance said:

He has now interrupted me 5 time since I started writing this despite being told to go outside and play.)

Fwiw, that's AWESOME that he's interrupting you. It's a GOOD SIGN!! It means he's socially motivated, trying to connect, and want to interact. That's SO good. It means he has the expectation that if he talks with you or communicates with you his words have power, that it's worth asking, that something might happen. It's good. Sure it's a pain in the butt, but it's good. 

5 hours ago, sweet2ndchance said:

But he just cannot or will not read on his own.

My ds "can" read at an xyz level and doesn't read. It's the combo difficulty of the dyslexia (which your ped is not qualified to exclude, mercy) and the language issues. He may read something and not really understand. He may not be following the narrative or may be having trouble with the syntax. He may not be visualizing well. You don't know any of that without evals. The visualization you can check yourself, just by asking. But it can take a bit of digging to figure out why a dc is bucking reading. 

5 hours ago, sweet2ndchance said:

meds making him a zombie

What kind of meds are being put on the table here??? Some kids have a flat affect and when they go on the ADHD meds it becomes more apparent. It didn't make them a zombie though. It's just how they are. And I like unfettered ADHD, sure, but a lot of times the ADHD person likes *themselves* better on the meds. 

Now if you're talking other kinds of meds, sure that's much more of a risk. And if you're like wow they're different on the ADHD meds, I think you just have to step into it and see what happens. *Most* people are glad they did. The *best* results come when you get behavioral supports *then* meds. So both pieces, in that order.

5 hours ago, sweet2ndchance said:

he scores high on the screening for ADHD inattentive and hyperactive

Yeah, it would be interesting to see what parts would improve with the meds. Meds are not a cure all or the only thing. They don't replace behavior strategies, learning about self-regulation and self-awareness, using strategies for anxiety, etc. They won't integrate retained reflexes. 

You can pretty much start where you want. If you're feeling like life is really hard right now, like he's a danger to himself or others, it might be the right thing to start with meds. Some kids' compliance improves with meds. Is there a family history of aggression, bipolar, or schizophrenia? My ds is a terrible candidate for ADHD stimulant meds because he has had aggression. So in his case, they wouldn't even consider meds. Psychs, people would beg, and the docs were like nope, nope, nope. For him, anxiety meds calmed down a lot and improved his compliance. So the retained reflexes calmed down his body and then working on the chemistry helped.

If he's not a danger to himself or others, you could consider taking 1-2 months to work on retained reflexes while you get evals. I would still get evals no matter what, but if the meds aren't a PRESSING NEED you could work on the retained reflexes first and see how far that gets you. Then get the meds and have the evals. But I would request the evals, all the evals, now, because it will take many months to get them all done and get the reports back.

It's possible that, given the complexity of the situation, it won't be as simple as one med, boom, everything magically better. Maybe it will be. Or he may be more complex. So you start with what is most pressing. But yes on evals. The rest is just what sequence you want to go in, what makes sense to you, what you can make happen.

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Yes to evals, and if your son isn’t safe at this point I would get a start on meds as well.  It can take forever to find the right one (or more).  We’ve had to start meds for both of my kids during quarantine because what was already significant anxiety became unmanageable anxiety and my kids became a danger to themselves and others.  We already had evals for our oldest so we just started med trials (2 months ago now and still tweaking trying to get it right).  
 

My youngest has never had formal evals so I began making calls and was surprised to find that the top practice in our area was able to get him in the next day to begin thorough evals.  They’re only having one family in at a time, we stayed socially distanced from the psychiatrist, she literally wiped down the clipboards and pens with sanitizing wipes for us to fill out rating scales, and we will do follow up visits through telehealth.  I share this to say, you might be surprised that the shutdowns have actually made it quicker and easier for you to access care in your area.  In the past we’ve waited several months for appointments, but by calling right as they were opening back up we were able to get in fast where others have cancelled their appointments due to covid concerns.  

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I would definitely rule out vision issues and get the glasses. Some people need glasses for only a brief time as they are growing, and some people are much more bothered by vision issues than others. You are looking for acuity and for things like convergence insufficiency (which can sometimes cause an eye to drift). 

Honestly, it sounds like he has ADHD no matter what, but it is possible for something like a vision issue to cause similar symptoms or exacerbate existing ADHD.

I have never known a child to be a zombie on ADHD meds. They have been life-changing here, and we're so happy we opted in. Peter Pan mentions some kids being more "flat" on meds. My older son was a bit that way, but it wasn't zombie, it was what his ASD looked like without ADHD making him incredibly uninhibited. He would rarely be described as flat now, but he is sometimes quiet in some situations or a bit late to think of what he could've said in a social situation. He's doing really well--it's been years since he started meds, and he appreciates them a lot. They make him able to do what he wants to do but can't when he's not on them.

 

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Ok, just taking some time to read through everything, follow links etc... I did finally get him an appointment with a developmental optometrist 2 hours away next week (only because of a cancellation otherwise we were looking at late July/early August). The speech therapy place does, speech, OT and PT so he will be tested for all three when we finally get all their paperwork together at the same time (He was suppose to be eval'ed in early June but paperwork didn't get submitted correctly so we are still waiting for a reschedule). 

So he has some other just off the wall.... quirks I guess is the best thing to call him. He is scared of loud noises still. Vacuum cleaners, public restroom toilets, any sudden loud noise he over reacts to. Would that be a retained reflex (moro reflex)? 

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I have a DD with dyslexia (and possible but undiagnosed ADHD) and a son with a whole host of things, including ODD and SLDs in reading and math, and ADHD, and ASD. I agree that it's going to take more than one specialist to sort things out for your son. I think it's great that you are looking for answers while he is still young, because early intervention makes a big difference, and getting the developmental eye exam and the speech evaluations are all good and appropriate things to do.

About the dyslexia question. Your doctor (pediatrician, I assume?) most likely did not run tests to screen for dyslexia, unless she ran the CTOPP, which would be highly unusual for a primary care doctor to do. So her conclusion was just an opinion. To determine whether he has dyslexia, he would need an evaluation. I would not rule it out based on your description, but because he has been able to learn the phongrams and is able to sound out words when he tries, I think it's possible that his reading issues could be due to vision or attention or compliance instead of dyslexia. Only an evaluation for dyslexia can tell you for sure.

About the ADHD meds. Honestly, it totally sounds anecdotally like you are dealing with ADHD, and the doctor did some screenings and agrees. When we had DS's neuropsych evaluation, they preferred for him to be medicated while taking their tests (he had just started taking meds, so we asked if he should take them or not). So I would not delay starting ADHD meds until you have done other testing. Hopefully the ADHD meds can help him maintain enough focus and compliance to get accurate results when he is working with SLPs, OTs, eye doctors, etc. I can tell you that when the child is not compliant with the testing, the experience does not always go well.

So, if I were you,  I would trust your doctor about the ADHD and start considering meds. They have been life changing here, and the ADHD meds that DS takes do help his ODD as well. It took several months and trials of several different kinds of meds before we landed on what worked best for DS. You will only get a "zombie" response if the med is not at the right dosage or is the wrong med. Sometimes kids LIKE feeling hyped up in their regular state, and it takes awhile to get used to feeling calmer. Sometimes parents also need to adjust to the child being calmer and not seeming like their normal self, because they should seem calmer. But not like a zombie. If it's zombie-like, the doctor can adjust to correct.

With our son, the ADHD meds not only help him focus on things like academics and household tasks, but they also make him nicer to live with. Because he has more ability to think before he speaks, he is less argumentative, and he is more willing to do what he is asked. It's a huge, huge difference on days when he doesn't take his meds for some reason. His meds help him function better overall. In your case, I think it's worth seeing if the meds could improve attention and compliance, while you continue to work on pursuing additional evaluations.

I agree that now is a tricky time for doing in-person things, and you will just have to judge your comfort level in that regard. I am very cautious, and we are doing many things over telehealth now, but I am about to schedule some further speech testing which will require an in-person session. I've decided that is important enough to move forward on, even though there are other things that we are deciding to put off. The eye exam I would also put in the do-it-soon category, because I don't think it will feel safer to go to eye doctors any time soon than it does now, and I don't think it's a thing to put off for a year.

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Some just general things I want to put out there.

Ds's doctor is our family physician, not a ped though she does see a lot of children. She is absolutely the best doctor we have ever had and will go the extra mile for us for anything. 

She will absolutely do anything we like, in the order we want to do it, as slowly or quickly as we want to pursue it within reason. I'm not worried in the least about any sort of struggle there.

 

Ds has childhood apraxia of speech. He spent 4 years or so in speech. Graduated out but was expected to go back so the speech eval was because we saw the apraxia showing up again, not because of the ADHD suspicion or anything like that. But since we are going private ST this time, they are also going to do OT and PT evals as well. We have mentioned to them that we are concerned about ADHD and they put it in the notes. Like I said though, we are still waiting on a reschedule due to paperwork not being submitted correctly on their end.

 

I'm not at all worried about going to the doctor or evals in the aftermath of the virus. I am not bothered at all, it is getting appointments that is difficult. There are many places still not taking appointments at all around here despite the fact that our county still has less than 50 cases total.

 

So all that out there, I plan to ask the doctor which medication she would recommend first but I would also like to know from those with experience, what medication would you have tried first if you had it to do over again? I know it is different for everyone which one ends up working but I'm just wondering if there is a med that people or their doctor's  prefer to try first.

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13 hours ago, sweet2ndchance said:

Ds has childhood apraxia of speech.

How is his speech now? If his articulation is not yet all there, you might look for someone well trained (ideally certified) in PROMPT. That's what we used, and it's AMAZING. 

16 hours ago, sweet2ndchance said:

So he has some other just off the wall.... quirks I guess is the best thing to call him. He is scared of loud noises still. Vacuum cleaners, public restroom toilets, any sudden loud noise he over reacts to.

Have you ever wondered if he has autism? 

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13 hours ago, sweet2ndchance said:

So all that out there, I plan to ask the doctor which medication she would recommend first but I would also like to know from those with experience, what medication would you have tried first if you had it to do over again? I know it is different for everyone which one ends up working but I'm just wondering if there is a med that people or their doctor's  prefer to try first.

Does he have any history of aggression? Our ped told us 70% of kids can take ANY ADHD med. So just in general, most kids do fine with any med. However your ds sounds like he has a bit more complicated situation and is possibly on the spectrum. The negative reactions to meds, including aggression and bipolar symptoms, are predictable with the genetics. If you happen to have 23andme results for him (or yourself, but ideally for him), you can look at them and make a good guess. If he has any issue of irritability and aggression, it gets much more challenging. Some of those kids can take a stimulant med and some can't. 

So you can find an article explaining the ADHD med options, but there aren't so many. You have 3 classes (stimulants--> ritalin type and amphetamine type) and nonstimulants. So they first decide stimulants or non stim, based on family history, and then they will *usually* try to start with the ritalin family. At that point they're just picking dispensing method (3-4 hour vs. extended release). If a dc is older (driving) or needs an all day effect, xr will be the way to go. So Concerta would be your XR of the ritalin type meds and Vyvanse would be your extended version of the amphetamine family. Beyond that, it's just trial and error. The non stim meds are varied as to what they do and are not considered, usually, as effective. So the more severe the ADHD (impulsivity especially), the less likely they are to be enough. Some are SNRIs and have a mild effect. 

Just my two cents, but I would make a list of what you're trying to solve. I don't know what your list should be, so that's why I'm strongly suggesting you do it. You're on the right track getting evals, but you're not getting big picture explanations for the big picture problem. I think it's possible your MD has not had enough time with him in enough situations to see the range of behaviors and what all is going on. She's relying on your information, and you may not realize all the things you should be telling her to get complete treatment. This is why a psych will spend 6-8 hours with someone before making a diagnosis. 

If I could suggest, you might do well to contact a clinic that specializes in autism and get someone who will run an ADOS on him. Talk with your friends and see who has a good reputation. You don't want someone who is anti homeschooling who will blame everything on you. 

So back to the list. The difficulty with the noises is probably a combo of OT issues and anxiety. The ODD is going to connect to the anxiety. The difficulty with the behavior and reading goes back to the anxiety. And yet the ADHD meds you're saying you want can exacerbate anxiety. Now on some kids it takes it down, but if there's significant anxiety (which there could be, maybe you're seeing it and don't see it yet) then it can become more apparent. 

For me, anxiety is probably the hardest thing to see, because the way they think of it clinically is NOT what I thought it would look like. And it's something to watch for. For my ds, that oppositional behavior goes DOWN WITH ANXIETY MEDS. And yet, like I said, his symptoms of anxiety are not things that I go oh yeah that's anxiety. Minahan's materials (the Behavior Code) and workshop were the thing that finally helped me realize "that word doesn't mean what you think it does" hahaha. 

So just keep working it. Talk these things through with your doc. Get a referral for a psych who can do full autism evals. That can get you the springboard to someone who can help you manage your case and think through all the details. I don't know if you know this, but my ds has apraxia. So I'm probably in some ways the 11 yo version of your situation. And I can tell you the reads but doesn't read thing is HARD and it does not have a single explanation. It's not like oh just do OG and he'll read. We did OG and then he was hyperlexic, not understanding what he read. And the things you were describing as inattention were all connected to high language situations, which could mean that he's NOT UNDERSTANDING. If the SLP owns deeper tests (not the CELF, not some stupid screener but really deep stuff, have them borrow them) so that they can actually get you data, then you may find some of his behavior is due to language issues.

Sounds like you're doing great tracking all this down. Keep us posted. I know it's hard.

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49 minutes ago, PeterPan said:

How is his speech now? If his articulation is not yet all there, you might look for someone well trained (ideally certified) in PROMPT. That's what we used, and it's AMAZING.

His speech is great except for a few non-age appropriate articulation errors. When he was released from speech in K for being on target, it was expected that he would need to go back before 2nd grade.

51 minutes ago, PeterPan said:

Have you ever wondered if he has autism? 

Yes. Constantly. He has so many little quirks that scream autism. Inflexibility, his play style (lining things up but not really "playing" much), the loud noise thing and more)

 

34 minutes ago, PeterPan said:

Does he have any history of aggression?

No, not that I can think of. He has a tendency to get carried away some times but he's not actively being aggressive if that makes sense. He is very straight forward and has to be helped, again and again, to remember socially acceptable conversation and that not all questions should be asked in the moment. He can be very aggressive in his questioning of things.

 

38 minutes ago, PeterPan said:

If you happen to have 23andme results for him (or yourself, but ideally for him),

Nope, I wish we did though. I am curious about myself and him and dh for that matter.

 

42 minutes ago, PeterPan said:

And yet the ADHD meds you're saying you want

Actually, it is quite the opposite. We are open to trying meds but we would rather try other things first. But then there are the days where everyone is in tears over his behavior and we just need to do something, ya know? We just had one of those days this week which may be why it sounds like we want meds. I'm just trying to gather as much information as i can on all the different options. Meds or evals just happened to be what our doctor suggested.

 

So on the PROMPT trained SLPs, all of them in my state are 2 hours or more away. How often would he need to do PROMPT sessions? The videos I've seen of PROMPT they seem to touch the child... a lot. Ds has never liked people in his bubble too much. He's getting better about not freaking out about it but he still likes his space. Any ideas about that?

 

 

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1 minute ago, sweet2ndchance said:

His speech is great except for a few non-age appropriate articulation errors. When he was released from speech in K for being on target, it was expected that he would need to go back before 2nd grade.

Good. There are detailed tests for language. The SPELT, TNL. There's another that looks at how kids categorize and think through attributes, etc. I forget the name, sorry. But if they just run the CELF or something, you're not likely to learn a lot. 

https://www.amazon.com/Word-Callers-One-One-Research-Informed/dp/0325026939/ref=sr_1_1?crid=2T1WZ91GZA0LQ&dchild=1&keywords=word+callers+by+kelly+cartwright&qid=1593092054&sprefix=word+callers%2Caps%2C166&sr=8-1  

They can also run the CTOPP, etc. too to screen for phonological processing, yes. But given the apraxia, try to get them to do deeper language testing. My ds had a lot of memorized language that masked his issues. The CELF misses kids because it provides models and uses multiple choice. 

4 minutes ago, sweet2ndchance said:

He can be very aggressive in his questioning of things.

Yeah, persistent, not moving on is the social thinking. By aggression, I literally mean hitting, destroying property, self-harming, harming animals or people, etc.

6 minutes ago, sweet2ndchance said:

everyone is in tears over his behavior

I think you're on the right track looking for complete evals. You definitely need the psych evals. Psych evals can be a clinical psych (1-2 hours), neuropysch (3-8 hours), or someone who specializes in autism. You'll just see what your options are. Technically a 1-2 hour psych eval can get it done, but your likelihood of incomplete explanations is higher. Mainly the person needs to spend TIME. And I'm suggesting you learn for someone who is well known for doing the ADOS and doing a good job with the ADOS. It's a very unique test with specialized training. I think it would help get the answers you're wanting. And it's the kind of thing that is usually done the FIRST TIME the psych meets the dc. That's why you are looking upfront for someone who is known for being good with it. There are other ways to look at the spectrum question, but having the ADOS as part of that can help. It's an objective set of activities and interactions the psych has with the client, and it helps them see objectively how the dc relates. It's much more informative than only doing say a GARS or ADI-R. You can fill those forms out all you want, but then they're limited to what you notice or the other person notices. The ADOS gives the psych a way to see the behaviors (hopefully) for him/her self.

10 minutes ago, sweet2ndchance said:

So on the PROMPT trained SLPs, all of them in my state are 2 hours or more away. How often would he need to do PROMPT sessions? The videos I've seen of PROMPT they seem to touch the child... a lot. Ds has never liked people in his bubble too much. He's getting better about not freaking out about it but he still likes his space. Any ideas about that?

I drove 2-2 ½ hours each way for over 9 years, so I'm not the one to ask, lol. No seriously, I figured you'd have a drive. That's why I was suggesting you start just with an *eval* and see what they say. PROMPT is typically done just once a week. Now my ds has considered to have moderate to severe apraxia. So I'm not trying to say no kid responds to other methods. However what can happen is that the other therapists moved forward without going through the motor planning hierarchy. So then the dc glitches at a spot and can't go forward, and it's because a piece is missing. So the detailed testing the PROMPT trained therapist (if they're fully trained, certified) can do will identify those issues. Some of them are things YOU can implement at home. 

The touching with PROMPT is not usually an issue for most kids. The therapists will be quite experienced and can usually work it out. But I'm only suggesting the drive is worth it *for an eval* and *if the person is certified*. If the person has only done the Intro course, I wouldn't drive two hours. But if they're certified or an instructor and you drive that far, it's very likely you will learn things that help you make a better decision on how to proceed. It's also possible they'll have the more detailed language testing. These kits cost $$$$, so they're not run of the mill tests. You'd be surprised how many big practices in the big big city near us do NOT have the detailed language testing. Don't even own the tests. 

Well you're doing the right things. It just takes a while to sort through, especially if spectrum needs to be on the table. Sometimes the answer with behavior is getting ABA. And people can be like oh ABA is horrible, I don't like ABA. We were told that by a psych. Thing is, there's like really strict ABA and then there's umbrella ABA. And so like us will say we got ABA, and what it means is we used a behaviorist who was trained in a lot of things and they helped us get on track, worked with him, and as an umbrella it can bill as ABA. You can also look for things like people doing Play Project or Hanen. If you find an SLP or OT trained in Play Project or Hanen SNATCH THEM UP!!! Also RDI (relationship development intervention) is another. But that training is lower and the approach isn't going to hit everything you need. But these are the types of things you're going to be looking for that will help you get to a better place.

When a dc is having a lot of behaviors, it might not be fast. Now our behaviorist was able to come in and make a difference immediately, yes. But it's a bunch of pieces and directions and you work them all and you make progress over time.  

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With your added information, I am glad that you're already wondering about ASD and open to that diagnosis. You're doing a great job getting evals lined up, and I think if you can find an autism specialist with a good reputation, it will be great. Locally, our options require some caveats, such as knowing that the big children's hospital will rarely give an autism label to gifted kids or kids with above average IQs--they'll get another label instead. 

On the problem with noise--you might want to get an evaluation for auditory processing disorder, but see what the PT or OT people say about reflexes. APD people will likely do a SCAN III screening. This is one place to look for APD specialists: https://www.igaps.org/.

My ASD kiddo didn't like loud noises he couldn't control, but he could be rational about things like the vacuum. He doesn't have APD. His bigger issue was being approached or surprised from behind or from the side, and if it was in a noisy environment, he would go into fight or flight mode so far that he would not be able to remember what happened. If he had retained reflexes, they were very mild, but the hypervigilance went away after doing the Wilbarger Brushing protocol and a very specific combination of spinning and heavy work with the OT (it took the OT numerous sessions to find the right combo). I would NOT do brushing without help from an OT. It's a bit of commitment, and things can be worse before they are better (same applies to OT and VT also). The brushing really clinched things, and I am so glad we had help with all of that.

My other son doesn't have ASD, but he has frank Moro issues. He didn't startle or have issues with loud noises. His reflexes were so bad that he hadn't developed far enough to have sensory issues--those came out more after we started working on reflexes directly. Then loud noises started bothering him--before that, he had been essentially deaf in loud places (he does have APD). He still doesn't really startle--for him, the noises are just painful sometimes. He's completed APD therapy, and it's been a big help. His reflexes are quite a lot better, but he will always have some difficulties with them because he has a connective tissue disorder, and they often don't completely integrate for people with CTDs.

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I have a 16 year old with issues with noises.  She doesn't like loud noises (at all), but also things like wind, dogs barking outside while she's inside, sometimes even while wearing headphones....things I can barely hear at all.  We did OT when she was a toddler for the noise sensitivity.  We paid a lot of attention to sensory integration and lots of exercise in general through early childhood, but we weren't seeing any issues by age 6-7 or so.   Didn't have issues again till she started high school.  We did hearing test, including auditory processing, and that was clear.  Nobody really has a good answer for that one, but best we can figure is an anxiety/ sensory thing.  Literally nobody has any treatment ideas.  I will say the more we can avoid it in day to day life, the better she copes with it when it's unavoidable, which is pretty much the OPPOSITE of the advice we were getting (she needs to just get used to it via lots of exposure).  We did CBT therapy and eventually anxiety meds after she developed ptsd from too much loud noise exposure.  It sounds like a pretty little thing, but it's seriously life impacting and limiting for the entire family.  

Noise canceling headphones are the bomb.  White noise and music are both awesome.  General sensory integration is very helpful - lots of weight, pressure, exercise, vestibular stimulation.  If reflexes aren't integrated, that's certainly something to do, but wasn't our issue.  

I have a kid with ASD, as well (different kid, oddly), and I'm glad you're seeking answers about that.  I DO think with the reading issues that you're going to probably wind up wanting ADHD meds, but definitely need to check the vision issues.  It's very possible that that's making it harder than it needs to be.  It sounds like he's got some pretty solid skills but is being held back by both vision and attention.

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*****UPDATE*****

So we saw the developmental ophthalmologist today. The whole experience was really nice, we really like the doctor and her office even though we had to drive 2 hours to get to her.

Her verdict is that, at the very least, he has an eye teaming problem. His eyes cross inward when he tries to focus. The result of that explains his reading problems to a tee. She referred him to vision therapy (which we have to wait for insurance to approve so it's going to be a couple months at least before we can start) and she prescribed him glasses to wear when doing "near work" like reading and writing. Before he starts vision therapy, they are going to run a whole battery of tests. The paper they gave me says they plan to do Base In Ranges, Base Out Ranges, Accommodations, Word Sentence Copy, Developmental Eye Movement Test (DEM), Visagraph, The Dyslexia Screener (TDS), Motor Free / Visual Perceptual Test, Test of Auditory Analysis Skills (TAAS), Birch Belmont (AVIT), Gross Motor, Jordan Reversals and VEP: amblyopia plus any additional tests that are indicated during the testing session. They gave me a whole bunch of information about the testing and vision therapy in general but I haven't had time to read through it all yet.

She also said he has a "unique" optical nerve and she wants to refer him to a specialist for more testing to rule out things like pseudotumor cerebrii which his dad has.

Still chasing speech, OT and PT evals. I just called them again today. Waiting for a phone call about scheduling psyc evals. Just a lot of hurry up and wait. I am glad to know it was nothing I was doing (or conversely, not doing) that was causing him reading issues. 

Edited by sweet2ndchance
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