long term experience after young child dx with ADHD

[Anonymous]

My 5yo son is likely going to get diagnosed with ADD/ADHD. I am reading that it's still relatively uncommon for such young children to be diagnosed, even though ADD/ADHD is common in the general population. Because he's presenting so young, does this mean we are bound to have more severe issues, or additional diagnoses down the road? Trying to mentally prepare myself.

[Anonymous]

It seems like often when diagnosed that young there is other stuff going on too. I suspect in my son it will turn out to be ASD but we’ll see.

[Anonymous]

My daughter was diagnosed at 5 with adhd. She’s now 8 and doing really well. Her presentation is mostly inattentive and I think she’ll always struggle with focus on stuff that doesn’t interest her, but she’s also creative and engaged when she’s interested. And she’s insightful, fun, smart and curious. No other diagnoses so far (and none anticipated). They told us to look out for asd, but she was just shy when she was diagnosed and has no signs of asd now. She’s a great kid and so easy in many ways because, when she’s engaged, she’s so calm and focused. Things like going out to dinner or on a vacation with her is easy and calm—she’s happy to color, read or chat. Every kid has his/her own trajectory.

[Anonymous]

Meds helped tremendously at younger ages, until they didn't. Then we had to find new ones, and he needed to be reminded to take them (as an older teen).

504 in school, continue with services at college (as soon as you've accepted an offer, have your child reach out to the disabilities service office - our child's school has been great about this).

Challenges that lay ahead are the need for adrenaline/excitement, so you can see how alcohol, drugs, gambling and sex addiction are a thing. Keep your relationship, actively work on it, and keep talking with your child.

[Anonymous]

It really really depends. Don’t borrow trouble. It is kind of a placeholder diagnosis this young when there are clear issues but not ASD clearly. And that’s the best you can do right now.

[Anonymous]

I do not think 5 is particularly young where the diagnosis bar is set at 6 and older. We know our kids. I knew my kid had ADHD when she was 2-3. Looking back I could have seen it as an infant. Anyway, I heard that the reason why ADHD diagnosis starts at 6 and older is because at 6 most of the kids that do not have ADHD calm down on the age typical hyperactivity and lack of focus, while the ADHD kids keep on keeping on.

[Anonymous]

And you asked about experience long term. We are 4 years after diagnosis and doing well! We have done OT, Speech therapy (for an issue caught on the neuropsych), parent behavior therapy, med trials (took us a year to find the right one(s)). At 10, school has never gone better, making friends, feeling confident.

[Anonymous]

Take heart op, I had the same fears but there are plenty of reasons for early diagnosis that don’t necessarily mean severe later. Sometimes it is an in tune parent that is more likely to seek support earlier, or a particularly good preschool or preschool teacher who identifies it early. Most kids diagnosed at 6 and later have been showing signs as well, and there are lots of reasons it didn’t get to diagnosis earlier.

I disagree with the pp on it being a placeholder diagnosis. I work in the field as well and don’t agree with this.

FWIW one anecdotal story. My child was diagnosed at 5 and is doing really great two years later. Found a medication that is a good fit, huge game changer. I anticipate plenty of bumps and continued need for support off and on over the next years but I am much less scared as I was when in your shoes. I now know my kid is not only going to be ok, but I think honestly pretty great (and also a ton of fun!). Hope it feels better soon

[Anonymous]

My child was just diagnosed 2 weeks ago with ADHD-combined type and he is in kindergarten and is turning 6 this month. We have a strong family hx of ADHD and it was quite apparent for him, so we wanted to trial medication support.

He received early intervention services from 16 months-3 yrs old until he qualified for an IEP - SLI (but we couldn't access it during the school day in prek), continued with ST in the community and then participated in OT for almost a year for a separate challenge and we had many meetings with his prek teacher before kindergarten. He's done ok in kindergarten, but only because he has an incredible teacher. He has not done as well with his extracurriculars or at home and so we felt like it was fine to pursue medication support. We'll see how he does!

[Anonymous]

My current senior was diagnosed at that age because of inattentiveness (often lost in thought daydreaming.) he’s doing great, very smart, does well in school and headed to a great college ( and still very clearly has inattentive adhd.) I think hyperactivity tends to cause more trouble socially at young ages so that may be why it we had an easier time.

[Anonymous]

The earlier the diagnosis, the more severe the symptoms, generally. Also, the more opportunities you have for intervention!

My son received a tentative ADHD-NOS (not otherwise specified) diagnosis at 6. He would have gotten one ealier except that his global developmental delay had clouded the picture. With all the symptoms he presented, he had an IEP at school, with pull-outs for writing (he had a scribe), a group speech class, an aide in the classroom, the works.

The diagnosis was confirmed at 10, and ASD was formally added at 17. We suspected all along he was autistic, and could have gotten all this sooner, but since the IEP was already in place, and we had done private speech, therapy and social skills groups ourselves, we didn't "need" the label sooner.

We timed the two expensive neuropsych for when we were looking for extra resources: at 10, entry into the GT/LD program of MCPS (gifted, talented and learning disabled), and at 17, residential and academic accommodations for college.

[Anonymous]

My 9 year old was diagnosed at age 5. I would say his adhd is quite severe. It was very obvious at a young age and continues to be textbook hyperactive type. I do think those who receive early diagnosis tend to have a more severe case. But that also gives you more time to work on solutions and get to know your kid.

School is really rough. It always has been. Start learning about the iep process now.

[Anonymous]

My DD was diagnosed at 6 but we knew at 5. She is ridiculously hyperactive so that piece was always obvious and probably helped get the diagnosis earlier than otherwise. I think she is a fairly severe case and I do think the more severe cases are diagnosed early. It’s possible she will get another diagnosis some time but right now ADHD fits well.

I know it’s easy to say and hard to do but try to see this diagnosis as a way of understanding the child you already had. It’s not a sentence to anything. My DD is doing well, rocking school academically and has some nice friendships. I try to enjoy the good times even though I know we have more challenges ahead