Saw specialist for adhd and aggression

[shimsheree]

We saw the specialist yesterday.  It was....eh.  (btw, the specialist is a developmental behavioral pediatrician...one of the only ones in our area)

He is questioning whether ds really has adhd or not.  He said the adhd medication ds is on (metadate cd 5 mg) isn't doing anything to help.  He wants him to go to a special needs preschool for at least 2-3 months and see how he does with different adults being in charge and different rules to follow.  If he still behaves like how he does with us, then he said that will give us more of an idea of what's going on with him.  He did say that ds's behavior is atypical.

Ds wouldn't do anything the dr. asked.  He wouldn't talk.  He refused to come into the room and then when he did, he walked really really slowly.  The dr. noticed that things have to be on ds's terms (although we try to NOT have it that way).  

I told him about how ds freaks out in public and how things have to be just right and how we try to predict what will set him off, and how we didn't know what was causing that.  He said that if you talked to a bunch of different specialists, they could all say it was something different.  He said an OT would say it's sensory stuff.  A psychiatrist would say it's adhd.  His point is that we don't know for sure.

And as for the aggression and impulsiveness, which is our biggest concern, he said there is a non-stimulant medication called Tenex, or Intuniv, that has been approved for adhd and it helps the aggression, but not inattention.  I don't think ds has a problem with inattention though, so that part doesn't really matter.  He said it's up to us if we want to try the medication or not though.  It's one that our pediatrician had thought we could try with ds, but she wasn't comfortable prescribing it since ds is so young still.  I've been reading about it online tonight, and it seems to really help kids.  I think I do want to try it, but I might wait till after his evaluation with child find.  I'm hoping at Child Find that they say he qualifies for the preschool and that he can hopefully start going to that soon.  That evaluation is December 1st.  

Also, I kind of got the idea that he thought there might not be anything wrong, but that ds could just be more anxious, emotional, and compulsive.  I think he used those words too.  But then other times he mentioned how ds's behavior was atypical.  :/  I also felt like he thought it could be our parenting because he mentioned how he thought ds runs the show at home.  But then I've been assured from other people that it's not our parenting....it's good to have people from the outside look and actually SEE us parent him and say that to us.  I feel a little defensive...we don't try to let him run the show.  We have rules and we enforce those.  We are doing the best we possibly can.  

I guess I'm a little disappointed.  There were three things I thought he might say:

1. ds does have adhd and this is typical adhd behavior.

2. ds has adhd, along with something else.

3. ds doesn't have adhd, but has this other thing instead.

And instead he said, send him to preschool, see how he does, if he still has problems, then we'll look more and see what it is, and oh, i have no idea if he does actually have adhd.  :/  And I'm not saying that what he said doesn't make sense.  It does actually.  I just...I don't know.  It's hard to go from thinking and researching for 4.5 months that he DOES have adhd and medicating him for it, to go to having no idea what's going on.  And that kind of sucks.  

So, I just thought I'd share.  I guess I just have to keep moving along in the process.  If anyone has any thoughts, feel free to share.  And thanks for listening too.  :)

[FarmerBeth]

Sounds frustrating.  Most diagnoses take awhile, I think your pediatrician was just being honest about the limilts of what he could say for now.  Hang in there, big hugs!

[Emmeline II]

Actually, I think he was being unecessarily wishy washy--though having his recommendation for the preschool may carry some weight with Child Find (which failed us ). I recommend developmental-behavioral pediatricians often, but I think I should specifically recommend an interdisciplinary team with a DBP, because DBPs who practice alone seem to be a lot like yours. So, I recommend looking for a program like this at a children's hospital, which is where we took ds for a follow-up evaluation after his ADHD diagnosis (at 6.5 years) by a psychiatrist. The team at the hospital was composed of a developmental-behavioral pediatrician, a speech-language pathologist, a psychologist, and a social worker (there was a student as well); the eval took 3 hrs and the results appointment was nearly that long as well. Having him in preschool (even if it wasn't a special needs school) could be helpful in getting a diagnosis because you'll have the point of view of persons outside your home/family to offer evaluators. Ds had never been in preschool/daycare, but when we started seeking help we did have dd there for comparison (not why she was there ) and they could see that the same parenting produced two different children.

You are already ahead of where we were when ds was that age; that the people in your life aren't blaming your parenting has probably contributed to that. Mid-way through ds' K year we took him to a family therapist who, though useful in evaluating our discipline style and how it worked with ds, didn't benefit ds directly and he wanted to "wait and see" how ds did in first grade before referring us to a psychiatrist. After school ended we had an eval with a wonderful OT who saw what we saw in ds, gave us a very helpful evaluation, and also gently suggested that ds may have signs of Asperger's. That August, ds tried to practice "firebending" in a closed bathroom which pushed us to go ahead and find a psychiatrist on our own. She diagnosed ADHD/ODD but didn't really have anything to say on the Asperger's question--which was fine since we were already involved in the appointment process with the hospital; at that time ds also started behavioral therapy.

The following February (a year after we first saw the family therapist) we had the hospital appointment; we gave them the OT report, teacher evals we had done at the request of his therapist, and they had us and his teacher fill out many pages of little bubbles. Ds had been on medication since the end of August, and the second one was working well for him at that point--I was afraid that it was working too well for them to see his all his issues, but they did see them.

Originally Posted by shimsheree 

He is questioning whether ds really has adhd or not.  He said the adhd medication ds is on (metadate cd 5 mg) isn't doing anything to help.  He wants him to go to a special needs preschool for at least 2-3 months and see how he does with different adults being in charge and different rules to follow.  If he still behaves like how he does with us, then he said that will give us more of an idea of what's going on with him.  He did say that ds's behavior is atypical.

I guess I'm a little disappointed.  There were three things I thought he might say:

1. ds does have adhd and this is typical adhd behavior.

2. ds has adhd, along with something else.

3. ds doesn't have adhd, but has this other thing instead.

One of the criteria for dianosing ADHD in the DSM-4 is that the symptoms be present in more than one location (like home and school), so that may be part of where is coming from in that regard. I don't necessarily fault him for not offering a definitive diagnosis at this point, but I would expect more than a "surgeons diagnose illnesses that require surgery" type response; even if he cannot tie the symptoms up in a neat diagnosis bow, they are still there and need to be addressed. The results evaluation from our hospital was really detailed and they explained their rational for everything; ds' ADHD diagnosis was confirmed, along with SPD suggested by the OT (though technically not a stand alone diagnosis), but Asperger's is still up in the air as the symptoms for ADHD/SPD/Asperger's overlap quite a bit, and she felt that what put him most in that catagory may improve over the course of the next year considering his age (under 7yo). The doctor did say that not having a definitive Asperger's diagnosis should not keep us from pursuing a therapy that may have an "Asperger's" label if we thought it would be helpful to ds.

Intuitiv is the extended release version of the non-stimulant guacafine (Tenex is the short acting version). It tends to work better on aggression and hyperactivity than impulsivity, but I've come accross several parents that report good results with impulsivity. ADHD medications can affect individuals very differently; ds did a trial of Intuitiv to help with his tics (already on Vyvanse) and it caused aggression, emotionality, and insomnia -- he had the opposite reaction than what is expected with Intuitiv.

~~~~~~~~~~~~~~~~~~~~~~~~~

Preschool-Age ADHD Children: Too Young for Diagnosis? | ADDitude Magazine ...

ADHD Parent Medication Guide prepared by the American Academy of Child and Adolescent Psychiatry and American Psychiatric Association http://www.parentsmedguide.org/ParentGuide_English.pdf

The Hows and Whys of ADHD Medication
http://www.additudemag.com/adhd/article/8673.html

A Full List of ADHD Medications

ADHD Stimulant Medications

ADHD Non-Stimulant Medications

Edited by Emmeline II - 11/17/11 at 7:10am

[journeymom]

ds tried to practice "firebending"

I like your son.    At least it was the bathroom where you could respond with some water bending. 

The doctor did say that not having a definitive Asperger's diagnosis should not keep us from pursuing a therapy that may have an "Asperger's" label if we thought it would be helpful to ds.

Yeah, that's a good thing to keep in mind.  

[Piglet68]

When my son was just about 3 yrs old I took him to a developmental ped for aggression. Nobody noticed the signs of autism then, and it was a long time before I was able to connect his aggression with social disabilities. From my experience and that of many other families I hear from IRL and on the Web, it's hard to diagnose autism at a young age. Aggression isn't unheard of in 3 year olds. However, my son's issues were very severe and still I was told "nothing is wrong".

I am deeply concerned that they are medicating your son when he is so young and nobody seems to know what his issue is. If I were you (and I'm not, so take this as just sharing not advice-giving) I would pull him out of preschool. Meds are generally given to make kids more manageable in an institutional setting. Not worth it, IMHO, especially since preschool is optional and totally unnecessary. 

Attention deficits are common in autistic kids. My son suffers from it too, but as a homeschooler it has never been an issue. It only arises when he is forced to be somewhere he doesn't want to be, or do something he doesn't want to do, for longer than he can tolerate (which isn't long compared to NT kids his age). 

I'm not saying your child has autism, but I would caution you that it is very hard to make diagnoses at such a young age. I feel your frustration, as we had the runaround for a while too. And I extend great sympathy to you - I suffered a great deal b/c of son's behaviours, not least of which was criticism of my parenting but also just the emotional upheaval of watching my child hurt other children. big hugs to you and I hope  you get the help you seek. 

[Emmeline II]

Originally Posted by Piglet68 
 

I am deeply concerned that they are medicating your son when he is so young and nobody seems to know what his issue is. If I were you (and I'm not, so take this as just sharing not advice-giving) I would pull him out of preschool. Meds are generally given to make kids more manageable in an institutional setting. Not worth it, IMHO, especially since preschool is optional and totally unnecessary.

Her son isn't in school yet; the special needs preschool was suggested as an aid to diagnosis.

And though I could understand medicating that young to deal with the aggression and impulsiveness, the doctors' attitudes seem a bit casual and I think it's strange that the doctor is telling the parents the medication isn't helping--with ADHD the benefit of the medication is largely subjective based on the parent/patient's goals. Also, though we didn't try medication with our ds until 6.5, it would have been beneficial a couple years earlier; ds was never in care or in preschool so his "unmanageableness" was in the home and in our ability to take him out of the home. I had to leave both a play group and a homeschool group due to ds' behavior and didn't leave our home alone with him much between 3yo and 6.5 years old. We even ended up visiting his grandparents separately from his cousins because we had to hover over him everysinglesecond to keep him from hurting them. His is last all-out public tantrum (though not untypical) was in leaving the library, where I tried to get my flailing/screaming 6.5yo out to the parking lot while simultaneously keeping my 3yo close enough to me, yet far enough from ds not to get hurt, then try to get ds contained in the truck (like trying to get a cartoon cat in a bathtub) so I could get him out of sight of the library and calmed down enough to go home.

Originally Posted by Piglet68 
 

Attention deficits are common in autistic kids. My son suffers from it too, but as a homeschooler it has never been an issue. It only arises when he is forced to be somewhere he doesn't want to be, or do something he doesn't want to do, for longer than he can tolerate (which isn't long compared to NT kids his age).

Well, that pretty much defines the inattention aspect of ADHD.

[Piglet68]

Originally Posted by Emmeline II 

His is last all-out public tantrum (though not untypical) was in leaving the library, where I tried to get my flailing/screaming 6.5yo out to the parking lot while simultaneously keeping my 3yo close enough to me, yet far enough from ds not to get hurt, then try to get ds contained in the truck (like trying to get a cartoon cat in a bathtub) so I could get him out of sight of the library and calmed down enough to go home.

Reading stories like this makes me smile because I know that I am not alone and someone else out there gets my crazy life. ;-)