Anonymous wrote:

Anonymous wrote:At that age, DS's symptoms were very similar except in addition to everything you listed, he could only follow one step directions. At age 5 he was diagnosed with severe ADHD. Medication has made a world of difference. It basically enabled him to access coping mechanisms he previously couldn't. He is also currently in OT and it seems to be helping his sensory seeking behavior.

If you do look into the possibility of ADHD, definitely describe the symptoms as you do here. It distinguishes from same age peer tantrum behavior and activity level.

Op here, thank you. I assume we are headed for an ADHD diagnosis, but they don’t diagnose it at 3, right? Do you know of any other resources we can get at this age? Does OT help? I assume medication is not prescribed until later. Are there any books you recommend? We feel so lost!

I’m the pp and fwiw our neuropsych said she had diagnosed as young as 3. It’s the severity that stands out and allows for the diagnosis at that age. I can’t speak to the age for medicating since DS was 5 which seemed young to us but for severe cases apparently isn’t. As far as reading, we subscribed to ADDitude magazine which has been extremely beneficial.

I would try ABA next with the program overseen by a BCBA.

Anonymous wrote:OP maybe not what you want to hear, but many of us on this forum with older kids did not find therapies helpful at all for kids this age. They are just too young to access the skills required by therapy.

fwiw, DS was diagnosed at age 3 with moderate/severe ADHD. Absolutely not too young to diagnose. I asked the evaluators about the diagnosis age, and the dev peds at KKI (where we had the eval) said that the literature all suggests that 3 may be too young because so many parents just think regular 3-year old range of behavior is intolerable and look for a diagnosis; or symptoms may be low enough that it really isn't clear if it's ADHD or not. But that a small subset of ADHD kids have such obvious clinical symptoms at age 2 and 3 that there's no reason not to diagnose for that group.

At that time, they told me to seek out social skills groups and behavioral therapy. I called every therapist within an hour drive and none offered those supports for 3 year olds. One very nice psychologist told me her own son had a similar profile, and that reality was that therapy wasn't going to do a thing at that age, and the only thing that would help is time and medication. I needed to hear that from an expert.

At age 4, we decided to start medicating. It was life changing for our household. We felt tremendously guilty, but DS wasn't functioning happily in this world and the medication let him find more peace.

Some on here have success with OT, but we did not, nor did any of my good friends. Just was added stress in our week.

Age 3 was a really hard time for SN kids because there aren't enough supports or answers to resolve these issues, and you're kind of in a desperately-trying-to-hold-on waiting pattern until medication.

Op here. This is extremely helpful and validating and matches my experience. I really appreciate your reply.

OP maybe not what you want to hear, but many of us on this forum with older kids did not find therapies helpful at all for kids this age. They are just too young to access the skills required by therapy.

fwiw, DS was diagnosed at age 3 with moderate/severe ADHD. Absolutely not too young to diagnose. I asked the evaluators about the diagnosis age, and the dev peds at KKI (where we had the eval) said that the literature all suggests that 3 may be too young because so many parents just think regular 3-year old range of behavior is intolerable and look for a diagnosis; or symptoms may be low enough that it really isn't clear if it's ADHD or not. But that a small subset of ADHD kids have such obvious clinical symptoms at age 2 and 3 that there's no reason not to diagnose for that group.

At that time, they told me to seek out social skills groups and behavioral therapy. I called every therapist within an hour drive and none offered those supports for 3 year olds. One very nice psychologist told me her own son had a similar profile, and that reality was that therapy wasn't going to do a thing at that age, and the only thing that would help is time and medication. I needed to hear that from an expert.

At age 4, we decided to start medicating. It was life changing for our household. We felt tremendously guilty, but DS wasn't functioning happily in this world and the medication let him find more peace.

Some on here have success with OT, but we did not, nor did any of my good friends. Just was added stress in our week.

Age 3 was a really hard time for SN kids because there aren't enough supports or answers to resolve these issues, and you're kind of in a desperately-trying-to-hold-on waiting pattern until medication.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Jeez that is tough OP. The challenges you describe with the meltdowns seems totally at odds with the dev ped blowing you off. Some parents have a low threshold for meltdowns and bad behavior, and immediately worry their kids have "something" going on. But given the list of all the assessments you've done, I feel like any good expert is going to see there is something more going on here than just typical 3 year old behavior.

Ultimately, I'd "guess" (obv not an expert - but just from our own experience and reading this forum for 8+ years) you eventually end up with one or more diagnoses of ADHD, ASD or anxiety - but some of those may not be easily diagnosable for many years. For instance, lots of kids from this forum don't get the ASD diagnosis when evaluated at age 5, but ultimately at age 8 or 10 get a "HFA" diagnosis. We can debate whether those kids really have "ASD", but it's at least recognizing they probably have always had something going on that makes them neurodiverse.

With that whole list of assessments, obviously your parent-gut is screaming out to you that there's still something going on here that's not being addressed. I'm not a "diagnosis shopper", but I would keep going to a dev ped, psychiatrist or neuropsych until I found someone to listen to me, that these aren't just normal 3 year old tantrums, but a kid that needs support.

Op here. I’m sure he has at least ADHD, though I know he’s too young for an official diagnosis. He might also have ASD, but so far that’s less clear.

I know our team of docs will write us referrals to whatever therapy we want-should I just ask for that?

We’ve also had genetic testing done and DS has a rare genetic disorder linked to severe epilepsy and ID (though his presentation has been unusual and he’s much less impacted than other kids with this diagnosis).

Despite all of this, I just can’t seem to figure out how to just get answers about how to parent my kid. We did OT when he was younger but it was not very helpful and more focused on fine motor.

Do I look for an OT that specializes in kids with ADHD?

Did they administer ADOS at 27 mo old? I have a child with a very similar presentation (but only 1-2 step instructions) and we got ASD diagnosis. Perhaps ABA could be one of the options? If you have ASD on paper insurance pays for it, and at 3.5 he is still young enough for ESDM, which is a more naturalistic modality.

Op here. I think what he had at 27 months was the ADOS, but I’d need to dig up the records to be sure. I know it was an autism specific eval since he’d already had several comprehensive developmental evals.

We tried to get the ASD diagnosis so it would pay for ABA and make things just easier for therapy and insurance but we haven’t been able to get it do you know what they want to see? I know when DS went for the autism eval, I guess there was a kid melting down in the waiting room and DS went and patted her back and said it’s ok, and kept looking at DH and the kid back and forth and saying “so sad, so sad” and the psychologist was just like, ummmm yeah he doesn’t have autism. At the time this is of course what I wanted to hear but maybe it was a red flag? Maybe we should get another eval for autism.

I mean, ultimately I’m not sure we need another diagnosis-I’m more trying to figure out strategies for dealing with the behaviors.

Anonymous wrote:

Anonymous wrote:Jeez that is tough OP. The challenges you describe with the meltdowns seems totally at odds with the dev ped blowing you off. Some parents have a low threshold for meltdowns and bad behavior, and immediately worry their kids have "something" going on. But given the list of all the assessments you've done, I feel like any good expert is going to see there is something more going on here than just typical 3 year old behavior.

Ultimately, I'd "guess" (obv not an expert - but just from our own experience and reading this forum for 8+ years) you eventually end up with one or more diagnoses of ADHD, ASD or anxiety - but some of those may not be easily diagnosable for many years. For instance, lots of kids from this forum don't get the ASD diagnosis when evaluated at age 5, but ultimately at age 8 or 10 get a "HFA" diagnosis. We can debate whether those kids really have "ASD", but it's at least recognizing they probably have always had something going on that makes them neurodiverse.

With that whole list of assessments, obviously your parent-gut is screaming out to you that there's still something going on here that's not being addressed. I'm not a "diagnosis shopper", but I would keep going to a dev ped, psychiatrist or neuropsych until I found someone to listen to me, that these aren't just normal 3 year old tantrums, but a kid that needs support.

Op here. I’m sure he has at least ADHD, though I know he’s too young for an official diagnosis. He might also have ASD, but so far that’s less clear.

I know our team of docs will write us referrals to whatever therapy we want-should I just ask for that?

We’ve also had genetic testing done and DS has a rare genetic disorder linked to severe epilepsy and ID (though his presentation has been unusual and he’s much less impacted than other kids with this diagnosis).

Despite all of this, I just can’t seem to figure out how to just get answers about how to parent my kid. We did OT when he was younger but it was not very helpful and more focused on fine motor.

Do I look for an OT that specializes in kids with ADHD?

Did they administer ADOS at 27 mo old? I have a child with a very similar presentation (but only 1-2 step instructions) and we got ASD diagnosis. Perhaps ABA could be one of the options? If you have ASD on paper insurance pays for it, and at 3.5 he is still young enough for ESDM, which is a more naturalistic modality.

Anonymous wrote:OP, may I ask where do you get epilepsy diagnosed if you are in dmv area? My kid has asd, adhd, speech disorder and highly suspected epilepsy diagnosis.

Op here. Gosh I’m sorry, I actually don’t live in the DMV anymore.

We have worked with Childrens Hospital of Philadelphia as they have a doc there who specializes in our rare disorder.

We actually got the diagnosis from just a regular pediatric neurologist initially, but DS was hospitalized at the time for seizures so that probably made it “easier” to document everything.

I’d say get a referral to a neurologist or epileptologist. It can take awhile to be seen, so do it now and cancel if you end up not needing it. Wish I had better info!

OP, may I ask where do you get epilepsy diagnosed if you are in dmv area? My kid has asd, adhd, speech disorder and highly suspected epilepsy diagnosis.

Anonymous wrote:Jeez that is tough OP. The challenges you describe with the meltdowns seems totally at odds with the dev ped blowing you off. Some parents have a low threshold for meltdowns and bad behavior, and immediately worry their kids have "something" going on. But given the list of all the assessments you've done, I feel like any good expert is going to see there is something more going on here than just typical 3 year old behavior.

Ultimately, I'd "guess" (obv not an expert - but just from our own experience and reading this forum for 8+ years) you eventually end up with one or more diagnoses of ADHD, ASD or anxiety - but some of those may not be easily diagnosable for many years. For instance, lots of kids from this forum don't get the ASD diagnosis when evaluated at age 5, but ultimately at age 8 or 10 get a "HFA" diagnosis. We can debate whether those kids really have "ASD", but it's at least recognizing they probably have always had something going on that makes them neurodiverse.

With that whole list of assessments, obviously your parent-gut is screaming out to you that there's still something going on here that's not being addressed. I'm not a "diagnosis shopper", but I would keep going to a dev ped, psychiatrist or neuropsych until I found someone to listen to me, that these aren't just normal 3 year old tantrums, but a kid that needs support.

Op here. I’m sure he has at least ADHD, though I know he’s too young for an official diagnosis. He might also have ASD, but so far that’s less clear.

I know our team of docs will write us referrals to whatever therapy we want-should I just ask for that?

We’ve also had genetic testing done and DS has a rare genetic disorder linked to severe epilepsy and ID (though his presentation has been unusual and he’s much less impacted than other kids with this diagnosis).

Despite all of this, I just can’t seem to figure out how to just get answers about how to parent my kid. We did OT when he was younger but it was not very helpful and more focused on fine motor.

Do I look for an OT that specializes in kids with ADHD?

Anonymous wrote: I would defenitely bring this up with his epilepsy dr OP, if you haven't already.

I think you should get an OT eval. It helps many kids and is harmless if it isn't helpful for yours.

Op here. We’ve discussed with our epileptologist. We thought this might be because DS is on Keppra. Doc said, eh, maybe, but the other meds have similar or worse side effects. Basically the epilepsy doc is only concerned with seizure control and wants everything else developmentally to be addressed with developmental ped.

For the OT EVAL, do you know how often insurance will cover it? We had one 2 years ago, but obviously DS is way different at 3.5 than he was at 1.5. That eval (not that it matters!) showed he was mostly on track. Our speech therapist says they only eval once every 3 years. I hope OT isn’t as restrictive.

Anonymous wrote:At that age, DS's symptoms were very similar except in addition to everything you listed, he could only follow one step directions. At age 5 he was diagnosed with severe ADHD. Medication has made a world of difference. It basically enabled him to access coping mechanisms he previously couldn't. He is also currently in OT and it seems to be helping his sensory seeking behavior.

If you do look into the possibility of ADHD, definitely describe the symptoms as you do here. It distinguishes from same age peer tantrum behavior and activity level.

Op here, thank you. I assume we are headed for an ADHD diagnosis, but they don’t diagnose it at 3, right? Do you know of any other resources we can get at this age? Does OT help? I assume medication is not prescribed until later. Are there any books you recommend? We feel so lost!

I would defenitely bring this up with his epilepsy dr OP, if you haven't already.

I think you should get an OT eval. It helps many kids and is harmless if it isn't helpful for yours.

At that age, DS's symptoms were very similar except in addition to everything you listed, he could only follow one step directions. At age 5 he was diagnosed with severe ADHD. Medication has made a world of difference. It basically enabled him to access coping mechanisms he previously couldn't. He is also currently in OT and it seems to be helping his sensory seeking behavior.

If you do look into the possibility of ADHD, definitely describe the symptoms as you do here. It distinguishes from same age peer tantrum behavior and activity level.

Jeez that is tough OP. The challenges you describe with the meltdowns seems totally at odds with the dev ped blowing you off. Some parents have a low threshold for meltdowns and bad behavior, and immediately worry their kids have "something" going on. But given the list of all the assessments you've done, I feel like any good expert is going to see there is something more going on here than just typical 3 year old behavior.

Ultimately, I'd "guess" (obv not an expert - but just from our own experience and reading this forum for 8+ years) you eventually end up with one or more diagnoses of ADHD, ASD or anxiety - but some of those may not be easily diagnosable for many years. For instance, lots of kids from this forum don't get the ASD diagnosis when evaluated at age 5, but ultimately at age 8 or 10 get a "HFA" diagnosis. We can debate whether those kids really have "ASD", but it's at least recognizing they probably have always had something going on that makes them neurodiverse.

With that whole list of assessments, obviously your parent-gut is screaming out to you that there's still something going on here that's not being addressed. I'm not a "diagnosis shopper", but I would keep going to a dev ped, psychiatrist or neuropsych until I found someone to listen to me, that these aren't just normal 3 year old tantrums, but a kid that needs support.

3.5 yo DS has epilepsy a speech delay and a mild developmental delay (he’s outgrown any fine or gross motor delays though so I’m not sure what this means now).

We are dealing with some difficult behaviors and I’m at a loss for what comes next. Examples:

-lots of meltdowns/tantrums. I’m talking level 10 inconsolable, lying on the floor. Sometimes just a few minutes long, other times this can go on for 20-30 minutes. Sometimes he seems to have clusters of tantrums where he melts down for 5-10 min, recovers for 5-10 min, then melts down again. These episodes can last a couple of hours.

-He doesn’t listen. Rarely. He does understand us (as we’ve seen him follow 2-3 step directions), but he just ignores us when we tell him to do things. He runs away from me in public.

-he’s very inattentive. He moves from one activity to another, is constantly grabbing anything and everything in sight.

Here’s what we’ve done:
-multiple developmental evaluations with a developmental pediatrician. This hasn’t been helpful. She just gives generic advice about boundaries, sleep, schedules, etc.
- speech therapy. Speech has come a very long way but it hasn’t reduced tantrums like they said it would
-autism evaluation with a neuropsychologist. He was 27 months at the time and they said he’s not autistic
-he has an IEP and goes to an inclusive preschool, does very well there-no meltdowns so far
-I’ve read several books (Explosive Child, Supernanny), and taken courses from Dr. Becky and Janet Lansbury.
-intense exercise, but this is complicated because he runs away from me on walks/runs/at the park

What do we try next? Do we need OT? sensory integration therapy? A different eval? ABA? Child psychologist? Do we just wait it out? Any other books you recommend?