intro and ADHD meds questions

[bookishmomma]

I'm BookishMomma and I used to be on TCF and TD under the same screen name, mostly active in the AL communities. Some friends let me know that the SN board had moved over here, and I'm coming out of lurking to intro. 

I have 2 boys, ages 6 and 2. The 6yo was diagnosed recently with ADHD-Primarily inattentive type and we are giving meds a go. So far we have tried Ritalin, starting at 5mg once per day and bumping it up to 10 mg twice per day. With 5mg we saw little improvement, but then on the 10mg he was spacing out (kind of a zombie effect) and having epic meltdowns at the end of the day. His regular pediatrician switched him to Adderall XR, 5mg, which is what we are doing now. Again we're not seeing much effect, with continued meltdowns (crying and overreacting) at home the end of the day.  His teacher said she is not seeing the meltdowns at school, but also is not seeing much positive difference. The meltdowns are making me hesitant to ask about increasing the dose, though.

I've been told there can be some trial and error with meds. A fellow mama of an ADHD kiddo I know said that when we find the right med and dosage "we'll know." So that makes me think we haven't found it yet. In the meantime, it is really hard to see DS1 have to go through this. Does anyone else have experience with stimulants and meltdowns with their ADHD kiddos? Did they eventually decrease as they got used to the meds? At this point, we are hesitant to go up on dosage with the Adderall XR because of the meltdowns.  Before the meds, he rarely had tantrum-type behaviors. He was spacey but happy. We have him scheduled to start behavioral therapy with a psychologist, but couldn't get in until March. We also have an appointment scheduled with a behavioral pediatrician who specializes in attention and mood disorders, so I'm hoping she'll have additional insight. But that appointment also is not until late March.

Other relevant info is that we recently started the IEP process at school, to see if he will qualify for services under OHI. He reads above grade level but his math skills are, according to his teacher, "very concerning."  This week we had the Review of Existing Data meeting. I am sure I will have questions about that as we start to get results from the various tests they are going to be doing.

Anyway, all that to say hello and nice to *meet* you.

 

[akafred]

Hi and welcome. My DD (8.5) has ADHD-combined along with a few other dx. We have not had long term success with any med. It seems she is a fast metabolizer of some things and a slow metabolizer of others. The biggest issue is she also has anxiety, and stimulants (esp at a high or even typical dose) cause the anxiety to really spike, which looks like emotional lability, defiance, anger, even meanness, something we NEVER see when she is generally regulated. It's like a Jekyll and Hyde thing in a way. (I'm also not ruling out the possibility she get a future dx of something like bipolar disorder, though her "cycles" seem to be closely related to medication. Hard to say.

I am wondering if your son has anxiety from the meds. Which can also mimick ADHD which could explain why the teacher isn't seeing improvement. It could be he can't focus now because he is too worried from anxiety, where before he couldn't focus due to ADD. There are some nonstimulant meds, but they are less effective for inattentiveness in general. Some people also have success with a combo of an SSRI and a stimulant. This combo we only tried once but it was a disaster. It is definitely a roller coaster. GL!

[funchicken]

Hi and welcome to the board

I have 3 girls ages 3, 6, and 9. DD1 has ADHD, SPD, and anxiety. We tried Concerta a few months ago, but DD didn't tolerate it well (meltdown city), so the psychiatrist decided to back off of ADHD meds for a while and treat DD's anxiety first. She's been on Zoloft for the past 3 months, and it seems to be helping a lot. It seems to keep the anxiety level low enough that she can recognize when it's ramping up and use strategies to help herself.

We just started the evaluation process with the school, but her teacher lets her take movement breaks and have extra time to complete things, and she breaks down multi-step directions to help DD stay on track. I'm not sure when/if we'll give stimulants another go. The insurance company was a huge PITA, and I want to see what happens with the school evaluation. I'm really really hoping for an IEP.

There is definitely trial and error with meds, and I agree it does suck to see your kiddo struggle and not know what the right answer is.

[bookishmomma]

Thanks for the responses. I would not be surprised if anxiety is at play, too, though it has not been diagnosed in DS1 as of yet. But I have generalized anxiety disorder (and take Zoloft for it) and anxiety runs strong in my family.

[auntie]

Feb 1, 2018 16:43:37 GMT -5 bookishmomma said:

I'm BookishMomma and I used to be on TCF and TD under the same screen name, mostly active in the AL communities. Some friends let me know that the SN board had moved over here, and I'm coming out of lurking to intro. 

Glad you found us. 

I have 2 boys, ages 6 and 2. The 6yo was diagnosed recently with ADHD-Primarily inattentive type and we are giving meds a go.

Who made this diagnosis, his PCP pedi? What scales were done and did the eval include a classroom observation? What behaviors led to seeking the dx? Best practice is a clinical psychologist, child psychiatrist, developmental or behavioral pediatrician who would look at more than just ADHD- often IQ, developmental skills around communication, social skills and emotional regulation. 

So far we have tried Ritalin, starting at 5mg once per day and bumping it up to 10 mg twice per day. With 5mg we saw little improvement, but then on the 10mg he was spacing out (kind of a zombie effect) and having epic meltdowns at the end of the day. His regular pediatrician switched him to Adderall XR, 5mg, which is what we are doing now. Again we're not seeing much effect, with continued meltdowns (crying and overreacting) at home the end of the day.  His teacher said she is not seeing the meltdowns at school, but also is not seeing much positive difference. The meltdowns are making me hesitant to ask about increasing the dose, though.

Not a doctor, but generally kids with straight-up ADHD respond really well to one of the two classes of stimulants. And quickly. You have tried both- the dexedrine and the ritalin based medications. A lot of people can become emotionally labile on one or the other, but not usually both. My kid is a sobbing mess on anything ritalin-based; my mother is a rote bitch on the same class of meds. 

I would hand over his prescribing, once you have a firm dx, to a psychiatrist. That's the specialist for psychoactive medications. The meltdowns could be caused by the emotional lability side effect I mentioned. The timing is interesting, too. If the kid is holding his shit together in school and melting down at home, it could be garden variety kid who is worse for mom than teacher or it could be he's crashing as the meds wear off. Back in the days before long acting meds, I carpooled a kid who was supposed to be getting an afternoon dose of Ritalin. Sometimes the school nurse was busy with a kid injured in gym or the art teacher forgot to send him and he didn't get his meds. On those days he was impossible- cruel to the other kids, rude to me and just ghastly. I had to appeal to his mom to get the school to step up or I was going to refuse to drive the kid at all. A year later Concerta came out and he was like a changed child- sweet, good natured and funny. Sometimes, especially at lower doses, the medication doesn't carry forward to provide an "even keel" past the end of the school day so the person crashes. In this situation a higher dose or "kicker" late in the day can restore calm. 

There's always the possibility that this isn't "just ADHD" (ADHD seldom travels alone) or that it is ADHD at all. It can be very difficult to tease out anxiety and ADHD-inattentive type because in a young kid they kind of look the same- distraction from within can look like inattentive ADHD. In kids with a tendency toward anxiety, stimulants can exacerbate that anxiety. Some kids with anxiety in the mix can not tolerate stimulants at all. Others can take them successfully if the anxiety is treated medically- usually with an SSRI, sometimes an atypical antipsychotic at subclinical doses. My own DS has quite the alphabet soup- ASD, ADHD-combined, Specific LD and (most recently GAD)- he's taken an SSRI and dexedrine based stimulant for years to great effect. My niece does a similar combination (she's ADHD-inattentive plus anxiety). 


I've been told there can be some trial and error with meds. A fellow mama of an ADHD kiddo I know said that when we find the right med and dosage "we'll know."

Both true.

So that makes me think we haven't found it yet. In the meantime, it is really hard to see DS1 have to go through this. Does anyone else have experience with stimulants and meltdowns with their ADHD kiddos? Did they eventually decrease as they got used to the meds? At this point, we are hesitant to go up on dosage with the Adderall XR because of the meltdowns.  Before the meds, he rarely had tantrum-type behaviors. He was spacey but happy. We have him scheduled to start behavioral therapy with a psychologist, but couldn't get in until March. We also have an appointment scheduled with a behavioral pediatrician who specializes in attention and mood disorders, so I'm hoping she'll have additional insight. But that appointment also is not until late March.

Kudos to you for getting him a psychologist- tx of ADHD is a 3 legged stool. Meds, accommodations and behavior mods together produce the best outcomes. In your situation, I'd back off the meds entirely and discuss this with the behavioral pediatrician when you start there. That will be the most qualified person on your team to trial meds. 

Other relevant info is that we recently started the IEP process at school, to see if he will qualify for services under OHI.

This is good. A school eval should act as a kind of second opinion and should include some scales your doc probably didn't do. I would ask them to run the BASC with the student reporting option since he's 6. This scale can screen for emotional wellness. The teacher and parent reports should provide some information around the disconnect you seem to have between behavior at home and in school. It could be he melts down because he's safer with his parents or it could be the structure of the classroom suits him. 

He reads above grade level but his math skills are, according to his teacher, "very concerning."  This week we had the Review of Existing Data meeting. I am sure I will have questions about that as we start to get results from the various tests they are going to be doing.

I would ask them to also do an evaluation for specific learning disability in math as well. That could lead to services under Specific LD as well as OHI. 

Anyway, all that to say hello and nice to *meet* you.

 

[bookishmomma]

Thanks for your thoughtful response, auntie. I'm cutting & pasting a bit to answer your questions...

Feb 2, 2018 5:09:06 GMT -5 auntie said:

Feb 1, 2018 16:43:37 GMT -5 bookishmomma said:

Who made this diagnosis, his PCP pedi? What scales were done and did the eval include a classroom observation? What behaviors led to seeking the dx? Best practice is a clinical psychologist, child psychiatrist, developmental or behavioral pediatrician who would look at more than just ADHD- often IQ, developmental skills around communication, social skills and emotional regulation. 

The diagnosis was the result of his first grade teacher encouraging us to talk to his pediatrician about his attention problems. This is not the first teacher to express concerns to us, but in the past I think everyone (my husband and I included) were hoping it was due to immaturity. He's a July birthday and young for his class. By now it is clear that he's different from other kids and he's not going to just magically grow out of it. His pediatrician had my husband and I, his first grade teacher, his kindergarten teacher, and the special ed aide in his classroom fill out Vanderbilt forms. He scored 9 out of 9 for all the "inattentive" ADHD questions on all 3 teacher forms. However, as I mentioned above, we are scheduled to see both a psychologist and behavioral pediatrician because I want some more specialized expert opinions about what we're dealing with and if there are any other diagnoses they need to consider.

My son does have some sensory needs. He still sucks his thumb at night and, in order to curb that behavior while at school, he has taken to chewing on his sleeve. We have tried giving him a chewy as an alternative, but I'm not sure if the chewy is making it better or worse. With the chewy he ends up having drool on his face sometimes, which is not great in terms of peer perception. Socially, he makes friends easily and is very empathetic but when it comes to his own body, he is very unaware of what he's doing and how other people are responding to it. ASD and SPD are on the radar, but that's something I plan to discuss with the specialists we'll be seeing in March. The psychologist he will be seeing for behavioral therapy is a PhD neuropsych (I'm lucky to live in a university town) and she said she can go down the evaluation path if needed, but wants to meet him a couple of times first. 

I would ask them to run the BASC with the student reporting option since he's 6. This scale can screen for emotional wellness. The teacher and parent reports should provide some information around the disconnect you seem to have between behavior at home and in school. It could be he melts down because he's safer with his parents or it could be the structure of the classroom suits him. 
.....

I would ask them to also do an evaluation for specific learning disability in math as well. That could lead to services under Specific LD as well as OHI. 

I will ask about these. I know they already have plans to do a time on task test, a sensory processing eval, and some others, but the BASC was not one of them. I will have to look at my notes (of so many acronyms) to parse out what exactly they already plan on doing. 

[akafred]

I also just want to add that age 6 or so is a pretty big brain "re-wiring" time for kids, second only to the re-wiring of puberty. This age 5-6 or so re-wiring can cause an increase in meltdowns in general, and when you couple that with the added mental and emotional demands of full day kindergarten or the increased academics of first grade (depending on the district, of course), these grades can see more challenging behaviors and meltdowns in the evenings in general. Just food for thought.

[akafred]

Vanderbilt is kind of a screening tool, not as robust as Connors or Basc. Some pediatricians use it as a diagnostic tool, but it really should be followed by more robust scales tests and observations.

Good for looking at sensory needs. We have seen a lot of improvement with weekly OT (private). DD is a seeker though.

[bookishmomma]

Feb 2, 2018 9:08:22 GMT -5 akafred said:

Vanderbilt is kind of a screening tool, not as robust as Connors or Basc. Some pediatricians use it as a diagnostic tool, but it really should be followed by more robust scales tests and observations.

Good for looking at sensory needs. We have seen a lot of improvement with weekly OT (private). DD is a seeker though.

The school OT came to our Review of existing data meeting,which my mom also sat in on (my mom is an OT in the same district but at another school). We are hoping he will qualify for school OT. My mom thinks he will. Here’s hoping. He could use help with fine motor skills and strategies for sensory needs.

[akafred]

If your school OT handles sensory needs (and of course your mom probably would know), you are pretty lucky. It isn't common for school OTs to do much with sensory at all. Mostly they tend to focus on fine motor. But it will be great if the school does offer it.

[auntie]

19 hours ago bookishmomma said:

Who made this diagnosis, his PCP pedi? What scales were done and did the eval include a classroom observation? What behaviors led to seeking the dx? Best practice is a clinical psychologist, child psychiatrist, developmental or behavioral pediatrician who would look at more than just ADHD- often IQ, developmental skills around communication, social skills and emotional regulation.

The diagnosis was the result of his first grade teacher encouraging us to talk to his pediatrician about his attention problems. This is not the first teacher to express concerns to us, but in the past I think everyone (my husband and I included) were hoping it was due to immaturity. He's a July birthday and young for his class. By now it is clear that he's different from other kids and he's not going to just magically grow out of it. His pediatrician had my husband and I, his first grade teacher, his kindergarten teacher, and the special ed aide in his classroom fill out Vanderbilt forms. He scored 9 out of 9 for all the "inattentive" ADHD questions on all 3 teacher forms. However, as I mentioned above, we are scheduled to see both a psychologist and behavioral pediatrician because I want some more specialized expert opinions about what we're dealing with and if there are any other diagnoses they need to consider.

This sounds quite familiar to me. We had a similarly slow reveal- August birthday only and a boy. He was super verbal and bright, but we heard the same concerns from all his teachers even though we didn't see this at home. I have the rare kid who was better behaved for me than at school. The bitch is, getting answers takes time. We started with the school's MSW and a Conner's and moved onto a psychologist and then a dev pedi for confirmation. 

My son does have some sensory needs. He still sucks his thumb at night and, in order to curb that behavior while at school, he has taken to chewing on his sleeve. We have tried giving him a chewy as an alternative, but I'm not sure if the chewy is making it better or worse. With the chewy he ends up having drool on his face sometimes, which is not great in terms of peer perception.

Unfortunately, the mouthing is very stigmatizing. DS was oblivious to the PB&J on his face after lunch which was very off-putting to peers. His first grade teacher loathed him and refused to prompt him to wipe his face. Wet sleeves and hands are a problem, too. Little kids hold hands and share materials, so drool can make a kid unpopular. I wonder if something else would work without being so obvious- a compression shirt, weighted vest or even therabands strung between the legs of his chair to push against. 

Socially, he makes friends easily and is very empathetic but when it comes to his own body, he is very unaware of what he's doing and how other people are responding to it.

You just defined what empathy is not. DS is a kind and very sympathetic individual. He's learned a whole range of rubrics by which he can make a pretty good guess at what an NT person might be feeling but it is not intuitive as it would be in a typically developing individual. Even now, at 24 he will sometimes come in from work and will interrupt what I am doing because he's oblivious that I might be busy doing something other than waiting to hear some funny work story from him. 

For kids who don't understand the impact their words and behaviors have on others perceive and treat them, I recommend any of the Michelle Garcia Winner Social Thinking programs. DS got a lot out of "Thinking About You, Thinking About Me" and "Think Social".  

ASD and SPD are on the radar, but that's something I plan to discuss with the specialists we'll be seeing in March.

Good idea. Nothing you write screams ASD to me, but that kind of zoned out inattention is often seen in kids with ASD. When DS was younger he used to "live in his head" which sometimes looked like ADHD but was more of an anxiety driven compulsion to get stuck thinking about his more preferred topics. Once when he was in 1st I asked him if he missed "free play" like he had in kindie and he said "I can have free play in my head anytime." He described his brain  around that time as being a 24 screen multiplex theater on which he can relive any experience he's had or show he's seen. 

The psychologist he will be seeing for behavioral therapy is a PhD neuropsych (I'm lucky to live in a university town) and she said she can go down the evaluation path if needed, but wants to meet him a couple of times first.

Great. Sounds like an awesome plan. 

I would ask them to run the BASC with the student reporting option since he's 6. This scale can screen for emotional wellness. The teacher and parent reports should provide some information around the disconnect you seem to have between behavior at home and in school. It could be he melts down because he's safer with his parents or it could be the structure of the classroom suits him.
.....

I would ask them to also do an evaluation for specific learning disability in math as well. That could lead to services under Specific LD as well as OHI.

I will ask about these. I know they already have plans to do a time on task test, a sensory processing eval, and some others, but the BASC was not one of them. I will have to look at my notes (of so many acronyms) to parse out what exactly they already plan on doing.

I like BASC. A full Vineland is also great for identifying glitches in communication and social interactions. If ASD is a possibility to be R/O, I'd ask the SLP to complete TOPL which looks at the pragmatic use of language. This really helped us see that despite DS crazy vocabulary and early speech, he struggled with the give and take of conversation. 

Read more: pandce.proboards.com/thread/592643/intro-adhd-meds#ixzz55yEHqPfm

[freezorburn]

Welcome!

[auntie]

Another thing to read up on, with the math difficulties and inattention/sensory stuff- nonverbal learning disability. This is a dx often given to girls who might be on spectrum. Kind of an autism-lite.

ldaamerica.org/types-of-learning-disabilities/non-verbal-learning-disabilities/

Schools do not generally recognize this as a thing, so I wouldn't push for it as a dx but strategies might be useful going forward.

[bookishmomma]

Feb 2, 2018 18:54:05 GMT -5 auntie said:

Another thing to read up on, with the math difficulties and inattention/sensory stuff- nonverbal learning disability. This is a dx often given to girls who might be on spectrum. Kind of an autism-lite.

ldaamerica.org/types-of-learning-disabilities/non-verbal-learning-disabilities/

Schools do not generally recognize this as a thing, so I wouldn't push for it as a dx but strategies might be useful going forward.

I had never heard of this. It sounds a lot like my DS. Thank you. So much to learn...

In good news, we got DS1’s report card today and it was better than expected. Math struggles are noted but I was happy to see some strengths I hadn’t anticipated, like reading comprehension. I’ll take any small win I can get.

[auntie]

Feb 2, 2018 19:48:50 GMT -5 bookishmomma said:

Feb 2, 2018 18:54:05 GMT -5 auntie said:

I had never heard of this. It sounds a lot like my DS. Thank you. So much to learn...

In good news, we got DS1’s report card today and it was better than expected. Math struggles are noted but I was happy to see some strengths I hadn’t anticipated, like reading comprehension. I’ll take any small win I can get.

Well, that's  good. Even with the math struggles, it's a starting point from which he can- and will improve. The longer DS was in school the better he did- better grades in middle school than elementary, even better grades his last 2 years of high school, deans list in college. DS does have dyscalculia, but he did much better with math than arithmetic. One thing to be very aware of is the kind of math curriculum the school is using- if he struggles in math, going forward a spiraling math program will not allow him the time and practice to master concepts before moving on. JMHO, be wary of accommodations that are simply doing half the work other students are assigned- yeah it makes homework and homelife less onerous but it will impact mastery of the material- kids who struggle with math need more practice sets not less. 

Reading is something to watch, too. It's great that he's "on grade level" but, depending where you live his well developing peers may be reading Harry Potter independently. When DS was in 4th, we bridged to public school with him "at grade level. I was pumped until it was brought to my attention that most of the kids were at 7th and beyond. Watch comprehension, too. In the early grades, comprehension is pretty basic; for years DS's "reading" comprehension was beyond his decoding because he brought so much background to the little paragraphs used to test this skill. They were generally straight forward with no implied or inferred information at this age and were often history, biography or science themed which played right into his wheelhouse. As he got older, his inability to recognize what others were thinking IRL spilled over into fiction. He learned to parse literary devices and character motivation but it's not something he particularly enjoys. 

[lemonberry]

Welcome!

[agedsubaru]

With both kids, we had a pretty rapid response to stimulants. For dd (hyperactive, combined), she takes about two weeks to even out on meds. DS takes right to them. We did do a genesight for dd this year. I was concerned how she metabolizes the stimulant. If your psychiatrist buys into this testing, it could be useful long term.

As far as the meltdowns, kids can hold it together for school and let it go at home. We have used a evening dose of a stimulant as dd got older for activities. We also use Intuniv in combination with the stimulants for her sleep disorder but it helps smooth out the transition between am and pm doses. Just giving you some ideas. Your psychiatrist or developmental pedi will be a better bet.

Auntie is right on about SLDs. A very large percentage of kids with ADHD present with SLDs as a comorbidity. Schools can be slow to diagnose and provide remediation for these SLDs. It is imperative to keep ahead of the curve with these learning issues. The long term consequences can be detrimental and life altering.