fabfive

New Member
Granted I don't really mean that I am going to but living with a child who is NEVER happy is exhausting. I posted this almost exactly a year ago:
I seriously CANNOT take the tantrums that last for HOURS with difficult child#3. It's like he gets a little worse everyday. He is never happy and spends most of the day either screaming or crying. I am getting no answers from our behavioral pediatrician. We see him pretty often for medication checks and he is certain it's ADHD and has him on 1mg of Intuniv. I am seeing no results with the Intuniv but he just reassures me it's trial and error when trying ADHD medications.

He has gotten worse. He is never happy and he's usually crying and/or raging over something. He hits me, his siblings, punches walls, and he is defiant ALL of the time. He is such a handsome little guy and we have ALWAYS told him how cute, smart, etc. he is. Now all he ever talks about is how ugly he is, how fat he is (he weighs 42 lbs. and he's 7- NOT fat at all), how everyone hates him, how he wishes he had never been born, how stupid he is, etc. I could maybe understand if he was a moody teenager and always talking that way but at 7 it makes no sense to me.

Pediatrician still insists it's ADHD and to just "hang in there" with the Concerta. He's on 18 mg and I notice NO CHANGE whether he takes it or not. We stopped Intuniv because he was falling asleep at school. He takes Clonodine now because without it he'd stay up all night- no kidding. Is there any possibility it's NOT ADHD and the Concerta is just making him worse?
 
T

TeDo

Guest
There is ALWAYS that possibility. Just out of curiosity, do you notice anything similar between him and the 11 year old? Pervasive Developmental Disorder (PDD) is on the spectrum so it could be possible he's on the spectrum as well. From the things you're describing now, he sounds a lot like difficult child 1 did when the stuff at school got him severely depressed. Depression in kids generally is expressed as anger. If the psychiatrist won't listen to you about the medications and insists that it is ONLY ADHD and to wait it out, I would SERIOUSLY be changing psychiatrists in a hurry. I would also look very hard for a neuropsychologist. It sounds like he needs a THOROUGH evaluation. Treating the wrong diagnosis can sometimes do a LOT more damage. Trust your mommy gut. Something more or different than ADHD is going on. Find professionals that will actually HELP.
 

InsaneCdn

Well-Known Member
Is there any possibility it's NOT ADHD and the Concerta is just making him worse?
You've got an ostrich for a doctor.

There's only two options on the diagnosis. Either your difficult child is something else entirely, OR he really is ADHD plus a few other things added in. It's one or the other. There's no way this is "just" ADHD. (I live in a family with 4 different flavors of ADHD... and related to even more flavors.)

Any chance Concerta is making things worse? Well, it's definitely not making things better. And in my experience, the Ritalin family (which includes Concerta) is usually black and white - when it works, it works well. If it isn't working well, it's not the right drug. And then, on top of that, yes, different people can react differently, and various adverse or atypical reactions to Concerta are not rare.

He needs a comprehensive evaluation. Plus Occupational Therapist (OT) evaluation for Speech Language Pathologist (SLP) and motor skills. That's just for a minimum. (JMO)
 

fabfive

New Member
Our pediatrician. did want to screen him for Asperger's but I really don't see it in him. Like I am not seeing it at all but he does (and he specializes in Autism Spectrum Disorders (ASD)) so maybe I am missing something?
 

Californiablonde

Well-Known Member
You're son sounds exactly like my daughter was at that age....almost identical. She raged constantly and also said negative stuff about herself like she was ugly, stupid, fat, ect. She also had a hard time sleeping and would frequently go to bed at one or two in the morning then wake up bright and early at the crack of dawn. Some nights she wouldn't sleep at all. In preschool she never napped. They had to remove her from the other kids because she would keep them awake by talking out loud while everyone else was trying to sleep. psychiatrist first diagnosed her with ADHD and gave her Adderall in first grade. In my mommy gut I just knew it was more than ADHD. I trusted psychiatrist and gave her the Adderall. She became SO much worse. Her raging lasted hours. Her afterschool daycare threatened to kick her out because they could no longer handle her. She was always a very difficult child up until that point, but never bad enough that the school threatened to terminate her. She also hallucinated and saw her stuffed animals trying to kill her in the middle of the night. She was destructive. She would physically harm herself. It was too much for me to take, so I took her off of Adderall without psychiatrist's consent. That's when she finally got her diagnosis of bipolar. We tried several mood stabilizers and we finally found the right combo of Trilpetal and Geodon. It was trial and error for a couple of years, but we finally got it right. She is now fourteen and doing well with medications and an IEP. I would seriously question your son's ADHD diagnosis. That's usually the first label docs slap on your child when they are suffering from behavior problems. Have you seen a psychiatrist with him or just a pediatrician? I would take him to a neuropsychologist and get him thoroughly evaluated there. Usually there is a long waiting list to be seen but it's so totally worth it when you find the right one. My difficult child 1's neuropsychologist was the biggest blessing to ever happen to us. He worked wonders for us. I don't by any means want to attempt to diagnose your son. I am not saying he is bipolar, but some of his symtpoms, especially the lack of sleep, sound so similar to my daughter. Lack of sleep is a hallmark symptom of bipolar. There are many other things it could be too, so don't think I'm trying to diagnose for you, but I have been there done that with my daughter and I know the warning signs. I wouldn't trust a pediatrican to diagnose my child. They simply do not have the knowledge and training that a psychiatrist or neuropsychologist does. By the way, how does he do in school? Is he able to control himself there, or does he have the same issues?
 

InsaneCdn

Well-Known Member
You don't want the pediatrician doing the screening - and you don't want to be screening for a specific diagnosis.
He needs a comprehensive evaluation - typically, in the US that would be neuropsychologist, or in general, a developmental pediatrician, or a child behavioral/developmental team out of a teaching hospital.

Oh - and the Occupational Therapist (OT) evaluation can be and often is separate - and you can do that first. Sensory issues can be a HUGE source of frustration. So can motor skills.
 

fabfive

New Member
By the way, how does he do in school? Is he able to control himself there, or does he have the same issues?

He does okay. I mean, he's rude to other kids and if he doesn't like his teacher then forget it. His principal at our old school thought he was too immature for first grade and wanted him sent back to Kindergarten after the school year started but we kept him in the first grade. He excels in math but his writing skills are horrible and he's reading right at grade level and he struggles with it. Apparently he's the lowest reader in the class (which angers me he even KNOWS that because it just makes him feel worse about himself) and I am honestly surprised he passed this year.
 

buddy

New Member
Of course it is a possibility. I'd probably go to a neuropsychologist for a new, unbiased evaluation. Sometimes docs get locked into their initial thought. I have not seen kids with adhd (and I admit I haven't seen all the kids with adhd in the world, lol) who have constant meltdowns like that. It seems like more and if the concerta does not help, it could be not the right adhd medication or that it is not adhd. I have found (along with other parents, but I am not a medication expert so you have to check this yourself) that in terms of the stims, you can see a difference at the right dose pretty quickly. It does not fix everything, but it opens the door to being able to now teach skills and hold their attention long enough to work on things. When was it last increased? I know that is scary but some kids do need more than others.

Could he be depressed? That neg. thinking does not sound adhd like...yes, any disability can create self esteem problems but it sounds like you are saying his whole thinking process is dark. If he is super adhd like and depressed and you can see cycles through the day, could it be bipolar?

Yeah, seems after this much time, it is time to check into a new doctor. You've given his way a more than fair shot and the longer your son gets entrenched in this kind of thinking the harder it will be to undo, I'd think. At least a second opinion?? A neuropsychological evaluation or a pediatric psychiatrist could be really helpful. Does he have developmental or academic issues that you are concerned about (any other neurological issues?)....

I'd try a neuropsychologist if it is within your means, esp if insurance would pay. If not, they surely would cover a pediatric psychiatrist. Maybe call NAMI and see if they have a list of docs they know of in your area. Just a thought.

Given you have one son on the spectrum, it could be that your doctor is missing the signs, not familiar with kids who are on the more subtle end of the spectrum.

ok, diagnosis aside, what triggers do you notice with the meltdowns?. I can guess one is hearing NO (Ok I am projecting, but lots of us have that one)...how about transitions to less preferred activities, not having things go his way, hunger, activity level, is there any pattern you can see? I have to investigate this and re-evaluate over and over. For my son right now, main triggers are fear/panic/anxiety....feeling left out, hunger, transitions and gross motor activity. Let me tell you, that is most of life. But it DOES help to know and to always have snacks on me, know not to use logic or words when in those warning situations, just to let his brain be calm and quiet (not even the car radio on, can't even use the wind shield wipers unless mandatory) and to make sure he knows the schedule so that he is not left wondering what comes next--or worse he develops a wish list or plan and when I can't come through on his every demand it is not pretty. So when the schedule is said and done, it helps a zillion percent. I can only slightly imagine how to do that with five kids, but if it helped reduce rages, I'd figure a way.

For you, none of that may help though. Some kids just need to get through to the other side. What do you do when he is violent? How do you keep the other kids safe? Must be very stressful. I'm so sorry for you (and for him, surely that can't be a fun way to live).

HUGS, just really sorry for the situation.

I TOTALLY understand the fantasy of running away. Would be lovely some days.
 

fabfive

New Member
You don't want the pediatrician doing the screening - and you don't want to be screening for a specific diagnosis.
He needs a comprehensive evaluation - typically, in the US that would be neuropsychologist, or in general, a developmental pediatrician, or a child behavioral/developmental team out of a teaching hospital.

Oh - and the Occupational Therapist (OT) evaluation can be and often is separate - and you can do that first. Sensory issues can be a HUGE source of frustration. So can motor skills.

I think he has had one before. Isn't that horrible that I am not entirely sure? Too many kids with too many issues means too many evaluations over the years. ;) I know he had quite a bit of screening done in K. I am going to dig through his papers here in a bit.
 

TerryJ2

Well-Known Member
I'm adding to the list of people who say do not let your pediatrician do the testing. You want a neuropsychologist.
I do not like the idea AT ALL that your pediatrician is blowing it off by saying it's just ADHD.
Come ON.
Many hugs.
 

hearts and roses

Mind Reader
You don't want the pediatrician doing the screening - and you don't want to be screening for a specific diagnosis.
He needs a comprehensive evaluation - typically, in the US that would be neuropsychologist, or in general, a developmental pediatrician, or a child behavioral/developmental team out of a teaching hospital.

Oh - and the Occupational Therapist (OT) evaluation can be and often is separate - and you can do that first. Sensory issues can be a HUGE source of frustration. So can motor skills.

IC is right on the money...find a neuropsychologist or developmental pediatrician. DO NOT have the school or your reg pediatrician do any evaluations AT ALL.

Best of luck. Even with one diagnosis, there are very often overlapping disorders involved and none of them are one size fits all...and neither are the medications.
 
FabFive - What you said sent of alarm bells with me because I felt the exact same way about my son when they wanted to evaluate him for Asperger's at age 9. Run run run to a neuropsychologist and get a full evaluation done on him. I did not think my son had asperger's and maybe he doesn't - but there is definitely something going on with him and now that he is a teenager we are going through hell and I have no diagnosis but Tourette's and ADHD which is not where the problem lies with him. I think it is more than that.

Please do not make the same mistakes I did. If you get the evaluation done now you can help him now and you are also one step further ahead if other problems arise down the road. I wish you well on your journey in finding help for your precious child.
 

InsaneCdn

Well-Known Member
I know he had quite a bit of screening done in K
If this screening was done at school, I'd ignore it, and go with private evaluations.

Schools generally can't afford to do ANY kind of comprehensive evaluations, in any field. And they generally limit their search to known issues with definite school impact. (Not that good people at good schools don't exist - they do. But even then, they are constrained by budget, time, etc. The best ones can raise all sorts of flags for others to look into, the worst ones barely scratch the surface.)
 

fabfive

New Member
FabFive - What you said sent of alarm bells with me because I felt the exact same way about my son when they wanted to evaluate him for Asperger's at age 9. Run run run to a neuropsychologist and get a full evaluation done on him. I did not think my son had asperger's and maybe he doesn't - but there is definitely something going on with him and now that he is a teenager we are going through hell and I have no diagnosis but Tourette's and ADHD which is not where the problem lies with him. I think it is more than that.

Please do not make the same mistakes I did. If you get the evaluation done now you can help him now and you are also one step further ahead if other problems arise down the road. I wish you well on your journey in finding help for your precious child.

Thank you so much. You are right in that doing it NOW is the absolute RIGHT choice. See that I have a "easy child" in my sig? I spent so many years with blinders on in regards to her behavior. In fact, I remember when she was 9 I was CERTAIN she was bi-polar but I held off on doing anything about it. I have no idea why. I guess I hoped she was really fine and it was all just a phase. A couple of months ago I found out she was severely depressed, had a plan for a school shooting, and had suicidal thoughts every.single.day. Straight to the psychiatric hospital we went. She is now seeing a counselor and we are going through thorough testing for her. So far they think ADD (makes sense now I guess), depression, and she's right on that line where Asperger's begins but not enough for a diagnosis, know what I mean? I will NOT make the same mistake with him.
 

pepperidge

New Member
I have had a kid that responded well to ADHD medications and one who didn't at all. I think I would give an ADHD medication about a week tops and then decide that it isn't doing any good. And yes they can increase aggression and violence in some kids. Intuniv was a disaster with my supposed aDHD kid. I think it is definitely time for a new psychiatrist.
 

lovelyboy

Member
Hugs to you!!!!!
This can all be very overwhelming!
The meltdowns and depressed mood also sounds to me more than just ADHD....
If he didnt met all the diagnostic criteria for AS, but almost......doesnt that mean he has Pervasive Developmental Disorder (PDD) not otherwise specified? That will put him on the Autism Spectrum Disorders (ASD) list? This will explain plenty.....also the adhd behaviour, anxiety, social stress, sleeping problems.....misinterpreting words and social situations that can all contrebute to feeling overwhelmed and depressed?
I agree with propper Occupational Therapist (OT) and ST assessment......Maybe something like a good SSRI will help with his frustration tolerance, anxiety and depressed mood.....ussually prescribed for Autism Spectrum Disorders (ASD)?
Just my thoughts!
Hang in there.....I think once you made up your mind to find a new path with supportive teammembers, things might start turning for the good! :)
 
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