New to all of this. What am I missing?

[WoeIsMe]

Hi everyone!

I've been lurking for a bit, but I'm a little flabbergasted and need your opinions.

Our little guy is 3. He's been a real mover and shaker since he was in the womb. I'm the mom who never attended play dates because I knew I'd spend the whole time chasing after my son. His aggression started at around 16 months or so. I was always the target of his aggression. I've been bitten, scratch, hair pulled out, screamed at, slapped, punched. His trigger is not getting what he wants. He has his sites set on doing or not doing something. When there's an obstacle put in his path, he has a major meltdown. He has very little impulse control. He has low self regulation skills as well.

He had an Occupational Therapist (OT) with an Early Intervention state program. Both the social worker and the Occupational Therapist (OT) could not pin point the cause of his aggression and said he had sensory issues. We've been working with a Ph.D doing parent child interaction therapy for about 5 months. It's helped some. That doctor still says she doesn't have a diagnosis for him. Maybe ADHD. Maybe a mood disorder. He doesn't show clear signs of either one.

Our state runs a diagnostic preschool. He was in the classroom for 3.5 hours a day for 17 days. He was evaluated by a psychologist, social worker, speech therapist, classroom teacher and aid. In their findings they addressed all our concerns. Just like the doctor said, they said it might be ADHD or a mood disorder. However, he doesn't fit the mold for either one. Again, no diagnosis, but they found his behavior to be a developmental disability.

Finally we got in with the pediatric neurologist. This doctor spent 15 minutes with us. He told us, "you won't be able to do this without medication" and said his working diagnosis was ADHD and maybe ODD. He gave us a list of medications he would try in order and wrote us a script for the first one. He order an EKG.

My gut is telling me that the something more should have been done with the neurologist. On one had, he sees kids like my son all the time. On the other hand, so do the other professionals that we've seen and all of them have said they can't pin point what is going on with my son. Sure, he's treating the symptoms and not the diagnosis, but he didn't ask us a lot a questions like the others have. He saw him as an angry child. I tried to explain that he's not an angry child. The reason he was upset at the appointment was that he wanted to leave the exam room (we'd been in there for 30 minutes) and we were standing in his way of leaving. Everyone else who has evaluated him says that impulse control is his main problem, not anger.

I'm not sure where to go from here. I tought that before medications, there would be blood tests done. My son has never even had a CBC. I thought maybe the neurologist would order some other kind of testing. The only thing he did in the office is test my son's reflexes and look in his ears and eyes. My thought (along with our other evaluators) was that we should do as much as we can before medications since he's only 3.

Can someone play devils advocate? What am I missing?

 

[InsaneCdn]

Skip the neurologist.
If you're in the US... try for neuropsychologist. If you can't get that (we can't, I'm in Canada), there's also child behavioural/developmental clinics out of childrens' hospitals, or PhD level psychologists with specialized experience in comprehensive evaluations.

You need a comprehensive evaluation.
The kind that takes something like 6-10 hours of testing. And then weeks before they can pull it all together into a "report".

They think it's something developmental?
Did anybody suggest Autism Spectrum Disorders (ASD) or Aspergers?

It's not going to be ADHD, or (at 3) a mood disorder, nor (not ever) ODD. To many of us around here, ODD just describes the behavior, not the source - somewhat useful as a placeholder diagnosis (confirms parent is not crazy, kid does have a problem) while they try to figure out the cause.

Can you tell us more about his history?
What was he like as a baby?
Adopted or bio?
Ever exposed to drugs (legal or otherwise) or alcohol before birth?
Family history of issues and challenges?

 

[WoeIsMe]

There's really nothing remarkable about his history. He met all his milestones. He's my biological child. He wasn't exposed to drugs or anything else harmful although I do have a blocked uterine artery that resulted in him being born at a low birth weight (5lbs). He was a healthy baby and child. I suffer from depression that has gotten worse as I try to work my way through motherhood and having a child that has been labeled with having a difficult temperament. He's always been more interested in adult things and less interested in toys. He figures out a toy and he's done! It's as if there's no fun in doing something repeatedly if the outcome is always the same. He seems bored, but he has a below average attention span. All the professionals we've seen have said he's bright. I take that with a grain of salt. Being bright or gifted or having a high IQ isn't going amount to a hill of beans if we can't get a hold of his impulse control and self regulation skills.

"They" don't think it's developmental. Everyone has ruled out anything on the spectrum. Both his pedi and the Ph.D that we work with don't think it's developmental or at least they don't think he needs a developmental pediatrician. The only neuropsychologist I've found in town doesn't work with kids. Their practice only does adult evaluations for court cases. The pediatric neurologist that we saw is actually the co-director of the department of the children's hospital in our city. They don't have any behavioral programs.

I've tried my hardest trying to advocate for him. I pushed through the system after being told countless times that it's just the "terrible two's" and that "it'll get better". I think you sparked another avenue in me. I don't care what the diagnosis is. I have the behaviors. I need to know the cause. I'm just having a really hard time trying to find someone who can tell me the cause of the behavior.

Thank you!

 

[BusynMember]

Try a neuropsychologist.

I think you could be missing autistic spectrum disorder. You'll have to go to a neuropsychologist and see what he/she says.

 

[DDD]

You're missing a neuro/psychological evaluation to define a path for parenting. I have had a difficult child as young as yours and with-o exaggeration she only slept a few hours out of every 24. It as the worst time in my life. Back in the 60's there were not as many options but believe me...the longer the abnormal behavior exists the more inbred it becomes. Reach out again and try to find the "right" experts. Hugs DDD

 

[DammitJanet]

Actually I think you have had quite a lot of testing done on your son. He has been watched in that preschool setting for 17 days by some very knowledgeable people. You might ask the doctor to run some labs if it will make you feel more comfortable but if they are starting out with the stims I dont think they are absolutely needed. Right now you are only going to be getting a guess as far as what is going on with your son because of his age. He is so young.

My youngest was tested at 4 and he tested as if he was non verbal but they wouldnt put that in his file because he was obviously verbal because he was screaming at them and telling them no, and he wasnt and to get away from him!

 

[buddy]

I agree, a neuropsychologist if you can find one.

How is eye contact?
Does he take turns?
Does he cover his ears or scream if there are loud our strange noises?
Does he play with toys in new and different ways each time or do the same thing over and over...?
Does he have a super fixation on a show like Thomas the tank engine or on certain objects like cars, vacuums,
Does he like you to cuddle him our only on his terms?
Does he wasn't to touch everything...or maybe avoid touching some things?

His falling apart when his requests are not responded to right away.....could be partly a communication problem. Does he bring you to what he wants or use his words?


Just throwing out things for you to add to a list when talking to the pediatric neuropsychologist.

Most of us have found that if there is a developmental disorder going on the only neuro behavioral diagnosis (diagnosis) given by most mental health folks like the psychologist and psychiatrist, behavioral counselor ....will be adhd and then they add a list of mental health labels like odd, anxiety, mood disorder etc.....

But many of is have found that esp if social skills are affected (can't play with others because of aggression?...probably lacks skills) and if there is clear sensory integration disorder along with adhd-like symptoms.......it is worth looking at the possibility of autism spectrum disorder.

It happens over and over. (esp. because it seems your gut is saying, its not general mood problems, he gets frustrated over specific situations that he can't communicate a better solution for)

It could be other things of course, but you asked for ideas so it is worth investigating.....

 

[Liahona]

Go with what you think is right for your child. You are the one living with him and if you think he would benefit from seeing a developmental pediatrician (or a neuropsychologist) then take him to one even if the Ph.d thinks otherwise. I have found most doctors have very big egos (even the good ones) and there are times for the sake of my kids I have to be insistent.

Along that line of thought, if you don't feel the dr who prescribed the medications is a right fit for your family then try a new dr. Even if the one you just went to is the co-director. I'd be leery of a dr slapping a diagnosis on and prescribing medications within 15 min of meeting the kid too.

Also many of the moms here have to travel to get to a neuropsychologist. And the waiting list is long. And because he is so young he might need to have the testing redone later.

I have found that just because some of my kids can talk well doesn't mean they can communicate. He can say the phrase "I want food" but to say it when he is hungry, to the right person, at the right time (not talking over someone), with the right volume and personal space, without dancing off in mid-sentence most times is beyond him.

*Good luck and welcome! You sound like a very caring mom.

 

[WoeIsMe]

Sorry, there's so much to respond that I'll just write a response instead of quoting.

Buddy, In his 17 day preschool assessment, he was very much above average in his communication. Everyone has said that spectrum concerns are not a consideration. He's "normal" in all aspects of social skills. The only sensory issues that he may have are visual. He's easily distracted so there might be some visual sensory overload. His Occupational Therapist (OT) was grasping at straws about any sensory issues. I have a 50 page report from his preschool assessment and the only are of concern is the psychiatric portion. On the surface, he's a delightful, well adjusted child. I shudder at the word "smart". I think the word should be outlawed from vocabulary, but that's the word people use when they meet him. He has no attachments to any toys. I fill out so much paper work for him and they always ask what his favorite toys are. He doesn't have any! He could take or leave anything he has.

DDD, Sleeping is another part of the diagnosis mystery for him. He sleeps! Takes a nap everyday. Bed time is at 7:30. Last night at 7:15 he said he was sleepy and ready for bed. We rarely hear a peep out of him before 5am. He's ALWAYS been an early riser but at the same time, he can't make it past 7:30pm. He also eats well.

Thank you all so much for you ideas. You've given me some food for thought! I found a neuropsychologist about 100 miles away. The facility looks great on the computer screen. It's worth a shot!

 

[buddy]

Glad you found a place!

I guess I miss understood when you said that you can't go on play dates.. Its wonderful you have do much early information.
When kids are very young it takes few "correct" answers to keep them within average range on standardized tests. Its frustrating, but things sometimes do become more clear as they get older. Luckily people do see your concerns and agree he is delayed so you can get some support.

And I know its hard, but many kids are hard to diagnosis when young. In fact, that's why in Special Education there is a general developmentally delayed category for early childhood.

As others have said, their kids did not ever get an "umbrella" diagnosis. And how they approached it was to sort out every area of concern....figure out the learning style of the child, Try therapies,.make accommodations, avoid triggers, and keep on.......

As time goes on, if there are more subtle things at work, the increased academic and social demands may reveal areas of weaknesses to help sort things out.

Have you had both private and school evaluations? (for Occupational Therapist (OT) and speech?) For now, you may need a break, but I found that though we really had some amazing school and private folks they usually gave me different clues and ideas....I always did both just in case. If you get to a point where you really wonder, that's another option.

If there are any visual concerns there are special eye docs who explore visual processing and do therapy.

There are some cool and well researched therapy programs like "boost up" and similar kind of things that work to organize the child at a neurological level.

I know what you mean about tons of paper work and long long reports. We fill out the same things over and over.


You are so on top of things, he will have a good chance with you on his side!

In the mean time, I lived as you do....couldn't really do play dates our social things because Q would need me close in case of trouble...No such thing as really relaxing and visiting. I can relate.

You are on the right track, we can only try our best and you are doing just that! Lots of parents in your shoes here so if there are specific issues then people may be able to share what they have done in those situations.

Hang in there!