Getting ADHD dx for Kids

[lilac05]

I’d love to hear about the process of getting your child officially diagnosed & then treated for ADHD. Did you need to have input from someone other than a parent?

I have ADHD. I’m 100% certain that my 10 y/o son has it, too. I have speculated since he was REALLY young. His toddler energy was not like other kids. He almost literally never stopped moving. Never sat to play with toys more than a minute or two. Just never sat still. Ever. (I have lots of experience working with toddlers, so feel confident in my assessment.) As he’s gotten older, he has dropped the physically hyperactive aspect, but is very inattentive. The trouble I’m having is that I can’t seem to get anyone else to see it. He’s extremely kind and polite, stays in his seat in class, and naturally very smart, so he doesn’t present as a typical kid with ADHD and it’s not really impacting his school (though I’m confident he’d do even better if he could pay attention). I’ve been asking his teachers since 2nd grade to look out for things, and they always just tell me what a nice, well-behaved kid he is and such a great student. Every one of them has commented that he often looks bored in class. (That’s because he’s off in his own world!) I never thought that being kind, polite, and smart would work against him, but it is. No one sees what I see, and it’s heartbreaking. He KNOWS there’s something different about him (He even wrote me a note when he was about 8 that said, “I think I have 80HD”), he HATES that he does things without thinking and doesn’t always follow the rules, and I think it’s really starting to affect him mentally/emotionally. He doesn’t believe he’s a good kid. (I know every parent is biased, but he’s truly an amazing kid. It kills me that he can’t see that in himself because he’s always dwelling on the things he has done wrong.)

Anyway, I worry about his future mental health if I can’t get him the help he needs. His pediatrician has been very much in the “well, let’s just kind of keep an eye on it. You know how kids can be.” She’ll give me a referral without an issue, but she won’t be a good second source of info for him. None of his teachers have reported seeing things of concern with him even when I point them out. (Like excessive daydreaming in class, inability to sit and focus to complete a homework task.) He slips by because he’s not disruptive and his grades are good. He eventually gets his work done, but it requires a LOT of time and prompting (which is killing his self-esteem, especially when he notices that his little brother can just sit down, do what has been asked, and then move on to something else).

So…I don’t know if I can get a second source that is often needed for the testing. And I hate to think of taking him to a psychiatrist where he hears me outline everything I think is “wrong” with him, only to have the doctor say, “But we don’t have enough info for a diagnosis.” Then I feel like it’ll impact our relationship and only make him more ashamed for how he is.

And moms who also have ADHD, how do you process the emotions that go along with knowing that your kid “gets” it from you? (Also, Parenting kids with ADHD while also dealing with your own is a special challenge in and of itself! Consistency is one of my biggest weaknesses…and also the very first suggestion everyone has for how to help kids!)

[expectantsteelerfan]

How old is your ds/what grade? What behaviors have you been asking his teachers to look for that they apparently aren't seeing?
Have you looked at the Vanderbilt assessment (can google and find it online) that they often use as the 1st step to diagnosing ADHD?
They do differentiate between ADHD Inattentive Type, Hyperactive Type, and Combined Type now, so it sounds like maybe your ds is dealing with inattentive type by no longer hyperactive. From my limited experience, doctors do expect to see the symptoms in more than 1 setting, but a 2nd setting doesn't have to be school. It could be music lessons/sports/camp, etc., anywhere where the child is expected to follow directions and struggles. And it makes sense to me that if they do have ADHD, it would be present in more than 1 setting.
For example, my ds is 12, and was diagnosed with ADHD at 8. He's never been a behavior problem at school and doesn't have some typical issues that kids with ADHD combined type display, such as yelling out or having trouble waiting to be called on, trouble waiting in line, trouble waiting for his turn during games, etc. He knew he had to be on his best behavior at school, and he was able to manage his behavior in a lot of situations, but his hyperactivity came out in other ways, such as fidgeting constantly, bouncing and swaying when he did have to wait in line, finding a way to still be constantly in motion while still fulfilling the 'sitting in his seat' requirement. And that doesn't even touch on the inattentive side. One clear example I remember from the year he was diagnosed was that when he was supposed to be paying attention in class/doing work, he was instead scanning the floor with his eyes to look for broken pencil tips (so little pieces of pencil lead), and if he found one, he would find an excuse to get up (usually to sharpen his own pencil) to get it. By the time his teacher noticed, he had collected a pencil-case full of little pencil tips.
But I would start with the Vanderbilts...if his teachers aren't very experienced with inattentive adhd, they might not be considering specific behaviors that would qualify him.

[lilac05]

I’ll take a look a the Vanderbilt.

He’s 10. Going into 5th grade.

An example from the other day. He just started band lessons. He’s very excited about this and eager to learn. Practice night 1. First attempt to do it results in tears of frustration. (Not atypical, but he’s playing percussion, so he doesn’t have the added difficulty of learning to get a sound out.) Second attempt, I sit right next to him to help him stay on track. Literally two minutes into practice, he says, “Hold on. I need to go check something” and leaves the room. He went to go check and see if the ice maker had more ice in it, as he had noted it was low earlier in the day. He didn’t need a drink, he was checking on the ice. Back to practice. Less than 2 minutes later, “WOAH! I just heard a truck go by!” He ran to the window and opened the blinds. “Did you see how jacked up that truck was??” (It wasn’t. It was just a city truck.) Less than 3 min later, “Mom. I learned the difference between xylophone and bells. Xylophones WAIT! It rained! When did it rain?” (Never finished the conversation.)

He’s aware of this and really bothered by it, but can’t help himself. He’s also impulsive and sneaky with food and other stuff around the house.

[wanderingback]

I would make an appointment with a psychiatrist or neurodevelopmental pediatrician. That’s your first step. Sometimes they have waiting lists so I’d make an appointment now. If your insurance requires a referral from a pcp then I would just let the pcp know you no longer want to "watch and wait" and would like a referral now. Not trying to be mean, but you say you don’t want to go to the doctor to talk about this, but how else do you think someone will assess what’s going on?
You have lots of examples, so you can bring a list. Also, he’s old enough as well to tell a doctor how he feels and that something is "wrong" so that’ll be helpful as well.
I hope you all get some answers!

[twinmomma]

I just went through this with my 9 year old DD. I ended up paying out of pocket for a full neuropsych evaluation at a private practice. I couldn't get the school to help because her grades are great and she's a good kid in class. Can't sit still to save her life, but apparently no one cared about that piece because academically she's fine. Schools will only help with testing and diagnosis if it's having an academic impact on their learning.

The neuropsych eval included a private interview with me and her dad over the phone to get family history and our concerns, then we did some online surveys, then DD spent a whole day with the evaluator to go through a bunch of different types of tests. Turns out, she has ADHD but is also extremely gifted. They call it "twice exceptional." So that explains why school thought she was doing fine, even though she's clearly struggling to get through normal day to day activities and expectations. The evaluation covered ADHD screening, academic/IQ testing, autism screening, etc. It was a full battery of tests. DD actually enjoyed it though - they make it fun for them.

Our next step is to find a behavior therapist to help teach skills and strategies and a psychiatrist who can help us with medication options. I'm in the thick of that part now and having a really hard time finding someone local who takes our insurance and works with kids. Seems like it's a lot of one or the other.

[expectantsteelerfan]

Jul 9, 2021 7:25:03 GMT -5 lilac05 said:

I’ll take a look a the Vanderbilt.

He’s 10. Going into 5th grade.

An example from the other day. He just started band lessons. He’s very excited about this and eager to learn. Practice night 1. First attempt to do it results in tears of frustration. (Not atypical, but he’s playing percussion, so he doesn’t have the added difficulty of learning to get a sound out.) Second attempt, I sit right next to him to help him stay on track. Literally two minutes into practice, he says, “Hold on. I need to go check something” and leaves the room. He went to go check and see if the ice maker had more ice in it, as he had noted it was low earlier in the day. He didn’t need a drink, he was checking on the ice. Back to practice. Less than 2 minutes later, “WOAH! I just heard a truck go by!” He ran to the window and opened the blinds. “Did you see how jacked up that truck was??” (It wasn’t. It was just a city truck.) Less than 3 min later, “Mom. I learned the difference between xylophone and bells. Xylophones WAIT! It rained! When did it rain?” (Never finished the conversation.)

He’s aware of this and really bothered by it, but can’t help himself. He’s also impulsive and sneaky with food and other stuff around the house.

That does sound very much like my ds and what I think of as inattentive behavior.  But I would think that if he's struggling that much with you right there next to him, he'd show signs of struggling during band lessons/at school too.  So hopefully someone else is seeing what you're seeing.  And I agree with wanderingback that you could make an appointment asap because even if the teachers aren't seeing these things, hopefully a doctor will.

[twinmomma]

lilac05, That sounds a lot like my DD. During the ADHD screening exam, she literally made the evaluator pause because she saw something shiny on the floor. Crawled under the conference room table and came back up with some tiny bead that had caught her eye. The previous person in the room had done an art project with a kid. I laughed so hard about it when I found out - nothing says ADHD like a shiny object derailing the exam!

[lilac05]

wanderingback, thank for the encouragement to just do it. I know that’s what I need to do. I think I’m discouraged from others not seeing what I see. But he’s never had a teacher get to know him well and he’s not in enough extra activities that other official adults (non-family friends) know him well enough to not just chalk it up to being a boy. 1st grade teacher was out Oct-March with a new baby, 2nd grade was out with a surgery Dec-March with lots of missed time for appointments because of a poor recovery afterwards (so she was very preoccupied and it wasn’t her best year of teaching, understandably), 3rd grade was on 2 different committees that took her out of the classroom multiple times a week, often for a full day. 4th grade was 100% virtual. His teacher did note that he was often not paying attention, but just chalked it up to typical kid. (Though she did say that he did it the most…and when I volunteered with the class, I saw that, too.)

I think that really gets me is how I see it affecting his self-confidence. He comes across as reserved or just kind of quiet, but he’s really just trying his hardest to do the right thing and not draw attention to himself.

[ny96]

We just started this process with my 8yo. I mentioned it to his pediatrician at his well visit and the pediatrician gave me 2 options: we could fill out a couple questionnaires that would also be given to his teacher and then have a consultation with the pediatrician, or we could get a referral to a neuropsychologist and have him evaluated which he said would likely run about $4000 out of pocket. We are choosing to go through the pediatrician for now. I’m pretty confident that it’s ADHD and the pediatrician is too. His teacher’s questionnaire also confirms our concerns. I’ve turned in the questionnaires and now I’m waiting on the doctor to schedule a consultation with us.

ETA: I just reread your post. I’m sorry that your doctor and the school wouldn’t be a good source. DS’s pediatrician has a kid with ADHD so he was very supportive of moving forward with a diagnosis. We have chosen to move forward at this time because DS is starting to fall behind in school due to attention issues and we don’t want to waste any more time. He’s a smart kid and most likely will be competing for a middle school spot come 6th grade and I’m honestly starting to get nervous about this.

[lynn07]

DS2 was diagnosed with ADHD inattentive type (and possible anxiety) when he turned 7. This is a kid who’s always been a great student, but we could tell that he was different than our neurotypical older DS. He is a daydreamer, gets distracted easily, can be very impulsive, always been an early riser because his brain is always thinking about something. We have about a million unfinished “projects” of his throughout our house at any given time. Our pediatrician is much more familiar with the hyperactive type and hasn’t been super helpful. We got his diagnosis by going to a child psychologist. I would highly suggest it. They can tease out quirks really well. They did a private meeting with just DH and I first, and we filled out the questionnaires without him, so it’s not like you’ll be sitting in front of him saying everything that’s “wrong” about him. Then they met with him over the course of two days. However, until his teacher this last year (4th grade), we never got much school support because he’s a good student. His teacher this year was the first to note his distractability and put some accommodations in place to help him. We haven’t done medication yet, but if 5th grade proves too difficult this year, we’ll start some. Definitely call around to get on a list for a neuropsychologist or developmental psychologist.

As far as a parent “passing it on”, through all of this, DH has realized that he has been struggling with what is most likely inattentive ADHD his entire life. It’s been a real eye opener for him. He has felt some guilt about it, but more than anything he uses it as a way to connect with DS2 when he’s having a hard time. He can explain how he feels the same way sometimes, and that he’s so happy that we know what his diagnosis is so that we can help work on strategies together, rather than having to figure out how to be a productive adult all on his own like DH had to. DS2 feels very open to talk about ADHD, which we love. I hope you can get some answers and support!

[redheadbaker]

DS was diagnosed with ADHD Combined Type at age 6. We had suspected it since pre-K, but in first grade, his teacher mentioned during our first parent-teacher conference (so, November of that year) that he struggled to sit still, called out without waiting to be called on, got distracted and didn't complete assignments, etc.

We didn't know that we could request an evaluation by the school, so we made an appointment with CHOP's Center for Management of ADHD. Both his teacher and us (parents) filled out questionnaires about his behavior (I think it was the Vanderbilt mentioned above). We couldn't get an appointment until April, and didn't get the diagnosis until mid-May. By that point, there was no point in requesting a 504 plan, and then we moved that summer.

He started 2nd grade unmedicated, and his behavior got more outrageous (making inappropriate jokes in school, yelling curse words on the playground) and it was affecting the other children's perception of him and getting in the way of making friends, so we decided to try medication. Focalin has worked well for him.

During the evaluation, H realized he probably has it too and was never diagnosed. He has trouble organizing, gets distracted while doing things around the apartment, loses EVERYTHING, and says he has always been like that -- he was held back in first grade for "immaturity" which was probably lack of executive functioning ability.

[luckystar2]

Push to get help and keep pushing. Ugh I hate how this is so hard for parents! I pushed for years for help for my kid and it took a long time but I wasn’t sure what we were dealing with. My dd was diagnosed last year at 12 as inattentive ADHD. We have had issues with her since she was a toddler. She generally did well with other people although had school issues in 2nd due to a terrible teacher. That’s when we first saw a therapist. She wasn’t a good fit and didn’t come up with a good diagnosis. Eventually we stopped going and continued to struggle. In 6th grade she was having some huge struggles with homework and just chores/dealing with us. I went back to finding a therapist again and luckily had a connection to get in with a decent one. Within a few months she told us she thought dd had inattentive adhd and we should talk with her pedi about trying meds. We went to pedi armed with the notes from the therapist and filled out the Vanderbilt and that was enough for diagnosis. We were in the middle of Covid so the pedi didn’t bother trying to have her teachers fill out the Vanderbilt which I was happy about because I didn’t think her teachers would have had any issues with her. It’s always been mostly at home stuff but it does affect her school because of homework etc. Pedi and therapist said that some kids are able to struggle through at school for a while but eventually it catches up and starts showing in their grades, work etc. My dd was going to junior high soon and pedi agreed we wanted to try to help her before that because it would be a lot harder for her to continue to struggle through.

She started a med trial and it went pretty well so the pedi has continued her on it. This past year in junior high and hybrid went really well. We’ll see this coming year with a normal school year but this past year was light years better than any other year. I’m sad that it took so long to figure this out but happy we finally are getting her the help she needs.

[AdaraMarie]

I have never been able to get anything without a form from the teachers. Even though my dd is on a non stimulant med, her dr now requires appointments every 3 months with updated forms from teachers (crazy, but due to even more crazy xh it is our best option).

I would give the teachers a chance and maybe get on a waiting list for a more thorough evaluation if you need it later. Having the specific questions in front of them might make them remember things they didn't give a second thought to.

Good luck! It took us years to get a diagnosis and medication that has actually helped - and my dd was extremely disruptive/atypical at school. Everything is harder than it should be.

[lilac05]

Jul 9, 2021 8:58:28 GMT -5 luckystar2 said:

Push to get help and keep pushing. Ugh I hate how this is so hard for parents!

It is hard! And when I have my own ADHD issues, it just feels impossible. First step is to get myself more help. I’m getting back on the psychiatrist’s schedule. I had an appointment cancelled literally years ago because of an emergency on his end…and never got around to rescheduling it. (Thanks, ADHD.) I had medication, but it made my blood pressure skyrocket, so I didn’t keep taking it. My doctor gave me Strattera to hopefully get the ball rolling until I can get into the psychiatrist. I thought I was hanging in there without medication, but I’m realizing that it’s affecting my parenting…and keeping my kid from getting the help that he needs.

Even though he doesn’t have a diagnosis and I’ve never used the term ADHD, we talk often about how our brains are wired. And how we are similar in that way (and different than dad and bro). But not in a negative way, just different. We also call ourselves “out of the box thinkers” as we can both come up with more solutions to problems than most people. Having ADHD has many perks, too. I attribute some of my favorite things about me to it...I’m just not feeling them at the moment.

Thank you all for sharing your experiences. I can see my son in almost every one of your posts.

[secretagent]

Two of my kids have ADHD without the hyperactive diagnosis, and one also has severe anxiety. It took forever to get them diagnosed (now late elementary). The school was only marginally interested in discussing accommodations, until my kid with anxiety began exhibiting physical symptoms in class when they went back this past spring. Our principal blew us off for a long time because neither is (was?) disruptive. Keep pushing.

As a sidebar, only my anxiety kid is on meds right now (and hates taking them but that's a different discussion). We have not yet explored medication for my other child but probably will soon as the executive functioning issues are becoming an increasing problem.

[mainelyfoolish]

I have two kids with combined type ADHD, and one of them has additional diagnoses, so I’ve been through this a few of times. The fastest and easiest route for a diagnosis if you’re pretty sure it’s ADHD is to do the Vanderbilt scales with the pediatrician. I know you don’t think the teacher sees issues with his behavior in class, but I would try anyway because they should be able to accurately report whether and how often the child has specific behaviors in class, which is how the Vanderbilt is worded. You should be able to get the forms done, submitted, and have a follow-up with the pediatrician within a month or less.

I would not pursue a full neuropsych exam unless the Vanderbilt scales don’t indicate ADHD or you suspect something more is going on because the appointments are hard to get (months or years long waiting lists for doctors who take insurance, if you can get a referral) or expensive (in the $4k to $6k range for self-pay where I live).

FWIW, my DD got her ADHD diagnosis the summer before she started kindergarten and then her K and 1st grade teachers both said they didn’t see her having ADHD behaviors in the classroom. They were wrong. DD was a hot mess in 2nd grade, as her ability to mask her deficits with her intellect declined (she is 2e) and she started medication by 3rd grade.

[niq]

At this point, if you're this concerned but not getting any traction with school or medical professionals, I would look into private school that caters to children with various learning issues, if there's one where you live. Or maybe other private pay interventions, maybe a pediatric OT you can pay out of pocket for a couple of hours a week for a few weeks or months; find a tutor he can work with over the summer for 1-2 hours per day on a mix of learning and self-help/study/executive function skills; etc.

Karate and Dance are supposedly pretty good extracurriculars to help with "not sitting still", I don't know how seriously to take that advice though.

We are in a similar-ish boat, but 2 years younger and everything nosedived in the pandemic. Hopefully things improve once in-person school returns.

[ny96]

Jul 9, 2021 18:48:24 GMT -5 mainelyfoolish said:

I totally agree. Having just completed the Vanderbilt I can tell you that it was obvious to us as we were answering the questions that ADHD was in line with the behaviors we were seeing. Also the thing that struck me is that our pediatrician said that kids with ADHD are often about 2 years behind others in their neuropsycho development, and that description fits my son to a t.

[undecidedowl]

I wouldn't worry about whether or not the teachers think he has ADHD or certain symptoms. That's not their expertise. DS's teachers knew something wasn't right, but they didn't suspect ADHD either. I think DS's very polite, eager to please personality threw them off.

We scheduled directly with a child psychologist at a Center for ADHD. We had to fill out Vanderbilt forms and have teachers do them also along with a few other forms where we could describe our concerns. DH and I met with the psychologist first to discuss our concerns. Then, DS met with the psychologist for an appointment. DH and I went back for another separate appointment to discuss the diagnosis so it was not done in front of DS. The Center we used offers a parent training class for ADHD so we did that first, as recommended, then started medication through our pediatrician shortly after.

[erbear]

DD1 (now 12) was diagnosed in 4th grade at 10. We used Vanderbilt at home and at school. She’s now on Focalin at school and it’s made a huge difference. We went through our pediatrician.

[browneyedgirl9]

My son is 7.5 and diagnosed with ADHD and on meds. He had been struggling in school since kindergarten with attention, behavior, and impulse control. The doctor had parents and school complete a Vanderbilt assessment. We also attended an evaluation in person with a specialist. We tried therapy for 6mon and then moved on to meds. Medication has made such an improvement for us. It's like night and day!