Special Needs

Added an ADHD diagnosis - look for insight & reading recs

Hi, I haven't posted here for a long time, but thought it may be time to come back for some reading recommendations.

My son (8 yo) just had a secondary (primary is ASD - AS with old DSM) diagnosis of combined type ADHD added to his list. The doctor has recommended a medication trial as we already have some good therapies in place that he would suggest for an 8 with a new ADHD diagnosis. We are going to trial Adderall XR to start with. We will start with a 10 mg dose for one week, then 20 for one week and then 30 for one week. Each week we will collect data via a parent input form and the school will collect data with a teacher input form. At the end of the the 3 weeks we will go back in to discuss how the trial went and to analyze data to figure out the best dosage, if the medication works for him.

I am looking for some insight from the group on what to expect with the med trial, as well as reading recommendations. My doctor recommended this book: https://www.amazon.com/ADHD-What-Every-Parent-Needs/dp/1581104510. Has anyone read it? Thoughts? Also, if anyone is willing to share their experience with a med trial like this one I would greatly appreciate it. :) 
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Re: Added an ADHD diagnosis - look for insight & reading recs

  • -auntie- said:
    Thanks, auntie, this is really helpful information.

    Welcome to my world. DS also has Aspergers/ADHD along with remediated dyslexia and GAD. Fun times. We also first started meds at about 8. Some random thoughts and opinions-

    1. If you aren't working with a dev pedi or psychiatrist for medication management, find one; PCP pedis are not the best option for any kids on these powerful medications. Doubly so for those on spectrum who sometimes react differently to meds.

    We will be working very closely with the team that did the diagnosis, which consists of a Development-Behavioral Pediatrician and a Pediatric Neurophyschologist at our local (one of the big ones) State University's Autism Clinic. The Dev. Ped. will be the one doing medication management. We have his after hours number to call and he said he WILL answer on evenings and weekends for medication management issues.

    2. Every doc does things a little differently, but given how young/little my DS was, we trialed using Dexedrine first- same active ingredient as Adderall but a much shorter half life in case the med isn't a good one for him. Then if you get a good result, you can start the Adderall and titrate up.

    Interesting, I will look into this one. My head is kind of spinning with all the medication options.

    3. Because people with ASD can be very sensitive to meds, our dev pedi started with 5mg for a week and increased by 5mg increments. DS's initial dose at 8 was 15 mg. I am seriously side eyeing the notion of 30mgs for an 8 year old.

    Not knowing what a "typical" dose for an 8 year old is, his explanation at the time made sense. I have the go-ahead to call him with any questions once we were home and had time to think. I think this is going on my list of questions.Our son is thin, but heavy for his age (he is freakishly muscular), so I think that plays into it. He has to wear slims in his jeans, but his BMI puts him almost to the level of obese. The doctor did mention looking at his weight before he wrote the prescription.

    These meds may need adjusting as your child gets older and has more demands around social interaction and homework, as well as an increase in physical size. DS needed 30 mgs around the time he was in middle school, 40 through high school and is back down to 30 in college. We did the increases 5mg at a time until the last bump up. FWIW, DS's dose was higher than a number of kids I know his age who were also taking Adderall. (I used to camp with the boys and supervised the morning meds routine when DS was in scouts)

    Hmm, interesting. I will definitely do more research on this and clarify the dosage before we start our trial.

    4. When we trialed ADHD meds, we didn't inform the teachers on purpose. Think of it as a single blind trial- this will keep them honest. You don't want bias from a teacher who may want your kid drugged into a stupor because he's she's over his antics by March. Give him the meds for a week and check in with her- if there's an improvement, she'll notice. Trust me on this.

    Very interesting insight. The doctor does want us to start on a Saturday, so we have the weekend to get used to it and make sure he doesn't react poorly. Perhaps I will wait to inform them until Thursday evening. I like the idea of sending him without their knowledge, so they don't look at him unfairly.

    5. I wouldn't medicate without an IEP with meaningful behavior mods and accommodations- but it sounds like you have that covered.

    IEP is in place and well written. My son's school has a oddly large number of kids with IEP's in his grade. They made the decision to have one case manager follow that grade and that is her entire caseload. She is very involved in the day-to-day behavior management of the kiddos in this grade and has done a really great job of implementing strategies and training the paras on how to implement the strategies and accommodations.

    6. Anxiety drives the bus for my son. If yours is also an anxious kiddo, be aware that stimulants typically make this worse. DS also takes an SSRI for anxiety- much of his inattention is related to anxiety in the form of "what if" and compulsive thinking.

    Anxiety isn't a huge deal for us. It comes out to play sometimes, but not on a day to day basis.

    7. Stimulants can also reveal or exacerbate tics. If your son is already a "ticky" kid, it will likely get worse. There is a risk that the tics could be permanent.

    Also not a super "ticky" kid. We see some things that are vocal, but I think they are more of stimming behavior than a tic.

    8. DS had side effects when he first started or upped his dose- sleeplessness and decreased appetite. We found this passed in a couple days, so we always started a med trial on Friday or break so he'd have time to get used to the med. Plus, if there was an issue, it was on my watch. DS trialed Concerta and had a very bad reaction; I was glad he was with me when it happened.

    The doctor did warn us of those side effects. Fun stuff. We have 3 boys, all 3 with autism. The middle child has a feeding disorder and we have struggled with sever oral motor sensitivity with him. The youngest is a good eater, but still is failure to thrive. We are experts at adding calories to food. I am hoping that between adding calories and working on timing meals around when he takes his meds/his meds wear off, we will be able to work through the decreased appetite effect without losing a lot of weight.

    He has used melatonin in the past and reacted well to it. We are keeping that in our pocket as an option to cycle back on for a while, if needed.

    9. These meds kick in fast. If you are going to get a good or bad result, you should start to see it in about 20-30 minutes.

    Our Dev. Ped. said the same thing. We will know if it works or not immediately. It isn't going to take months of trial to know if it is working in his system. Pretty amazing.

    10. Expect ADHD to morph. Combined type at 8 might include out of seat behavior and blurting, by 12 executive function deficits kick in big time and poor decision making can include risky behavior.

    He is an out of seat kid - so dang wiggly, he talks too much, he blurts our and interrupts, he is impulsive, he is messy, he has a hard time following directions, he needs lots of reminders. B is the kind of kid that doesn't get into big trouble ever, but is just constantly in trouble.

    For some kids ADHD is like a brain immaturity that does improve as they reach adulthood, but this isn't always the case. DS, 20, seems to be coping with multitasking and executive planning better than ever, but he still struggles to maintain attention at times. I feel he's a little more impulsive than peers but I'm not 100% certain of that. He's developed a lot of good coping skills and learning as he goes along. He took a public speaking class over the summer as a 6 week night course- that was a real challenge for him, and he didn't do great (earned a B and a lot of constructive criticism about eye contact) but he pushed through.

    That is awesome to hear! It gives me hope that the insane number of therapy hours we put in every work are worth our while.

    I've not read that book. I've read others. Yours looks like it got good reviews and contains a good overview. Other books I like on the topic are- 

    The first has lots of information about executive function as it impacts a kid in school and out with strategies to help. The other is more about the social and emotional impact of differences like LD, Aspergers and ADHD. I <3 Richard Lavioe because he explains exactly how things we think of as purely academic problems also impact kids at home and in relationships things like being late because you can't judge time might look like homework that takes all night at 10, but IRL looks like getting fired because you are habitually late because you think your 30 minute commute can be done in 15 and you are seen as unreliable.

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