First post and long introduction/vent - 6yo son with- ADHD combo and CD

[Adizziedoll]

Hello Everyone!

I've been poking around this site on and off for many years while my son was undiagnosed, but knowing that my child was different from others even with people closest to me (and even better, strangers) trying to convince me otherwise. It's a little unsettling and darn right frustrating to hear over and over again "oh that's just normal boy stuff" when at home you're practically afraid for everyone's lives (and how the heck you're going to fix everything to get your security deposit back) because of your 2 year old son.

Well, finally, 4 years and 5 daycares later (one in which said she was educated in adhd and had one herself and would never kick him out ... 2 weeks later he was out), I think we're all on the same page. I am forever grateful to the public school, which is the first establishment to actually help us. When they called the emergency meeting a month into the school year, I thought "here we go again". (This poor kid has made so many "friends" just for them to give up on him and leave his life, it makes me so sad). They put him in a 8 week diagnostic Special Education. placement, with notes sent home every day, meetings every two weeks, an outside psychiatric evaluation courtesy of the school, and a plan built especially for him with 3 teachers making modifications everyday. It's been an awfully long journey, but here we are now with over 30 pages of diagnostic results and treatment suggestions.

I thought having a black and white label to prove my child was different would help me feel better, and even vindicated in a sense. Well it didn't, especially the part of the psychiatric evaluation. that states "Evan meets the criteria for both ADHD and Conduct disorder, a common comorbidity. He also manifests the signs and symptoms of ODD, but his misconduct is so profound that the diagnosis of ODD is subsumed and trumped by his diagnosis of CD. That reality is a poor prognostic sign." At first, all I could do was cry. I wanted to believe that a lot of it WAS "normal boy stuff" and it really was supposed to just be this hard ... or maybe I was just doing something wrong? I didn't want it to clinically as bad as I knew in my heart it was. I felt bad for bringing him into this world, I felt bad for the struggle everyone has endured and will continue to endure, and the most obvious person I felt bad for the most was my son himself.

I went to my pediatrician to discuss the outpatient care and sleep study the psychiatric suggested. He very quickly poo pooed all of that, and wrote out two scripts, Focalin XR and Trazadone, without wanting to hear a word I had to say about me needing support and psychoeducation so I can gain some tools to effectively parent my spirited child. He said, "You can give Lance Armstrong a bike, but with flat tires he's not going anywhere. You can have all the tools in the world, but you're trying to ride a broken bike. Try parenting him when the medications make it easier. " He gave me the scripts, and walked out the door. And so did I, not only convinced I needed a new pediatrician, but also feeling centered with a whole new level of determination.

My son is not a broken bike. He is a human being, and he was given to me the way that he is. Now I'm not here to repremand anyone that uses medication on their children ... if it works for you then that's freaking great. This explosive child stuff is hard on a family, and I don't blame anyone for wanting to bring peace into their home. Heck, I take Adderall for my adult ADHD to be a better mother to my child. So don't get me wrong here. I'm just not ready to give up yet. Why would I put him on trazadone for sleep without the darn sleep study? What if it's something completely unrelated to the ADHD (which nobody told me that's what it could be), maybe such as sleep apnea that his father also happens to have? Nobody even asked me about insomnia problems in the family. He takes the melatonin, that works moderately well. These new techniques the school has given us is working, he's getting better, so why couldn't counciling help even more? I'm not ready to give him the crutch. What if it breaks, and he has no idea what to do? I want to teach my child to learn to use what he has, learn who HE is to the core, if I can, and for him to make mistakes and learn from them,. He's 6 years old, I have time. Maybe when he's older I would consider it again, but not now.

My main problem is that I have a hard time letting go of traditional parenting and tradional child growth. I've done a lot of discovering of my own on how to communicate and parent him, but sometimes when I want him to get in the car I just want him to get in the darn car. Ok, a lot of the time. But yesterday, after a meltdown of not wanting to get in the car, I ASKED him why he doesn't like to go in the car. It took him a few minutes, but he finally told me that it hurts his butt, and I should put a pillow there (his booster seat). Seriously?? Why didn't I know this before? The cushioning on that hard plastic seat is as thick as my fingernail. He just doesn't know how to get past the feeling of anger to express WHY he's angry. All I had to do was ask. How many other things do we fight about that has an easy fix? Have I been making this thing worse? It just never occured to me because most kids would just tell their parents. But he's different, and everyday I'm learning how to be a different kind of parent.

Sorry for this extremely long, unorganized post (venting session), and I hope I didn't offend anyone. I've have a lot of realizations over the last few days, and I am very happy to have found a group that is understanding and sympathetic to my situation. It feels good to know that I'm not alone. I look foward to reading your stories and learning from you all, and sharing this journey with you.

Ginger

 

[nvts]

Hey Ginger! Well, you've written the story that many of us have lived!

I'm curious...did they do any type of sensory integration tests on him? Here's what I mean - does he seem super sensitive to certain sounds, tastes, textures, light, or complain about things like itchy tags on his shirt or underwear? Is he picky about materials for his clothes or bedding or anything like that?

Has anyone tried to identify triggers (things/situations that will set him off?)?

How is his eye contact with people other than you and/or dad?

Does he seem to know a ton of stuff about one or two particular subjects?

Is he a "black and white" kid (no real gray areas to be had?)?

Conduct disorder at the age of six is a little tough - I don't know, I always associated it with older kids - I could be just me, I don't know!

Welcome to the crowd! Keep posting - it actually makes you feel better!

Beth

 

[Adizziedoll]

Hi Beth

The school did do a sensory testing, as that was the first thing that was noticed when he was about 1 1/2 years old. A woman would play guitar in the classroom, and he would run to the back corner, cover his ears and scream. He would do the same with any loud noise. He's gotten better with that, but other things has surfaced, such as a hatred for tags, socks that were "too soft", pants that feel funny, ect. It's difficult to find clothing that is exceptable. And wham! one day something that once was acceptable is no longer. Makes it very expensive because by then it's worn and can't be returned lol.

Triggers? LOL "NO". Just not feeling in control, being too tired, ... some days we have no idea where it comes from except that he's just in a mood. We always start every day with a clean slate.

Eye contact was one of my issues, it's not great. When he's in a good mood it's okay, but he just can't seem to look at anyone when he's trying to explain a feeling. I don't know if he's thinking, if he's embarrassed, if he doesn't trust anyone with his feelings, or what.

He's extremely good at math, and asks me all the time about it. "5+5=10, right mommy?" He feels extremely proud when he knows about stuff, and will thrive to learn more about it. Somehow through all the behaviors, he's testing at a solid average to high (math) on all his academics. When we think he's not listening, he really is. He hears eeevveerrrrything. His long-term memory is incredible, he remembers things from when he was 2/3 years old and just randomly brings them up years later.

It's funny because at the school meeting yesterday, armed with all the test results, the teacher specifically said, "He's a black and white child." He knows that lunch time is at 12:30, and refuses to eat a bite until that clock says exactly 12:30. If something as simple as going to the bathroom at McDonald's nudges into our schedule that I explain to him, it's 20 questions of how the schedule is going to change.

My understanding was that ODD turns into CD at a later age as well. They said they rarely diagnose such a young child with the CD, and that's why it's a "poor prognosis". I'm certainly not glued to this diagnosis.

Just posting that one thread made me feel better. I'm communicating with people that understand it all, the good and the bad. I'm excited to be here

 

[nvts]

Hey Ginger! The reason I was asking those questions (and I apologize if I was being intrusive!), is that I had the IDENTICAL issues with my kids. I lost count on how many preschools, private schools, public schools, etc. that they were in - it was a nightmare!

It turns out that they're all on the autistic spectrum with a condition called Aspergers Syndrome. It's way high on the spectrum, but 2 out of three of them started out with the same diagnosis that you were given (adhd combo + ODD).

I would consider some outside testing whether it be multidiscipline or a neuropsychologist evaluation. You can usually get them done at a teaching or Children's Hospital. It usually has a very long waiting list (I always ask to be called if there's a cancellation!) but is really worth its weight in gold.

I have to tell you, I'm not a doctor, I can't tell you what's definately wrong, but I think it would be worth investigating - he sounds like a really great kid - and when you can get a handle on things nice and early, he can do just about anything!

Don't lose heart - that's what all of us come here for! If you need support or a shoulder to cry on OR you need a good laugh (you have to make sure to visit the Watercooler forum - that's where we take care of US!), we are here for one another!

Gotta go - I still haven't started the corned beef and difficult child 1 just got told they're switching para's on him and he's heart broken!

Later!

Beth

 

[smallworld]

Hi Ginger and welcome. I'm glad you found us, but sorry you needed to.

Many of us here feel that ODD/CD is a very unhelpful diagnosis, especially at your son's young age. It is merely a description of behaviors for which there is generally an underlying cause. When the underlying cause is identified and treated, the oppositional behaviors typically subside.

So your job -- as a warrior mom -- is to uncover the underlying cause for your son's behaviors. I think the psychiatrist who did the evaluation did a miserable job, if you'll excuse my bluntness.

Your son is showing some red flags for an Autistic Spectrum Disorder -- poor eye contact, sensory sensitivities, black and white thinking. That's what I would recommend you have him evaluated for at this point. Either a developmental pediatrician, an autism clinic at a children's hospital or a neuropsychologist is your best bet.

If you contact the local chapter of your Autism Society, I'm sure you can get a referral for a good professional in your area for a thorough evaluation.

Hang in there and keep posting. We're here for you.

 

[BusynMember]

in my opinion the labels you got, especially CD for a young child plus the ODD, are not very useful. If you live in the US, a good evaluator won't give a young child a CD diagnosis. plus ODD is pretty unhelpful and it sounds to me like he has symptoms that could put him on the autism spectrum, high functioning. I don't know if it's true, but it sure sounds like it. I would take him to a neuropsychologist for a fresh evaluation. School evaluations are pretty useless most of the time. I would not let things stand as they are. He will not improve if they are trying to treat ADHD and CD, which is supposed to be for over 18, if he has something else, like Autism Spectrum Disorders (ASD). It's a long road getting the correct diagnosis.

 

[Adizziedoll]

See, you guys are already teaching me things! Just to let you know Midwestmom, it wasn't a school evaluation, it was an outside evaluation from a Child/Adolescent psychiatrist, although the school did some testing as well.

I knew I felt funny about this CD diagnosis. The feeling that I'm getting from you guys is that, this ODD is pretty much a general diagnosis to give younger kids some sort of label, possibly because they don't know what else to call it? Do I dare say a cop-out?

It's funny because his father's thought was possible high-functioning autism. The eye contact has always troubled me. It's interesting because I recieved the autism sheet to fill out, saw many similarities, but almost instantly the psychiatric said "it's obviously not autism".

I happy that I came here, and it's just amazing to me that you all have the same advice and thoughts about this. 2 out of 3 kids with the ADHD combo/ODD diagnosis end up really having Asperger's? That's just incredible to know.

Now, I wasn't planning on doing this, but there are a few other things about him that may help?

He has had problems with hoarding food in the middle of the night. It's pretty much diminshed, maybe because he sleeps upstairs now, but it literally got to the point where we had to make a lock for the fridge and the cabinets. It was anything: blocks of cream cheese, cereal, bread ... It was very strange. He still has a compulsive eating issue.

He goes into these weird repetative episodes, where he keeps repeating the same sound or action over and over and over again until I have to stop him. I've also known a serious preference to organizing things, like the bottles in the shower were arranged in groups by color. Moving them would be a crisis.

I still have to remind him to do the simplist things, the most disturbing one being that he wipes his own butt after he goes number 2. I have no idea if this is a normal stage kids go through or what, but it's a problem. Yet, one time at the babysitters he wiped his butt with his hand and wiped it on the wall. Needless to say that arrangement ended.

He is flat out obsessed with the dogs. I guess it was a mistake to get them, but what's done is done and now I'm trying to figure out how to make it work. He is constantly smothering them, kicking his feet at them, quickly flashing his hands in their faces, teasing them. One is a much smaller dog, and I feel that he feels power over her, and is his target when he's angry. I was lucky to be 1/2 on the stairs when he decided to test out punting her down them. Call me a bad pet owner, but I would really like to solve this issue rather than get rid of them. They are part of my family too and we love them deeply.

He's stolen from stores before and hid the items from me, which indicates he knows it's bad. He'd rather be sneaky as hope he doesn't get caught, (which i've caught on and he knows he'll get caught) and will lie right to my face that he plans on following the rule. 2 seconds later ...

He is an extremely intelligant, creative, good boy. He can be in the middle of the most evil tantrum of all time, and if he sees me crying, snap! he's asking me what's wrong, petting my hair and telling me I look like an angel. So I know he's a genuinely amazing person inside. He even says, " I want to be good, but my brain just doesn't work." It's so sad to watch him struggle with himself.

 

[Adizziedoll]

Thought of a few more, LOL

He hits and bites himself out of frustration.

He has an oral fixation. He started sucking his thumb when he was four. He chews on his shirt, pencils, bracelets, whatever looks good to him. He just needs to cheeeeew.

Again, I don't know what's normal and what's not, so if it's fine just tell me I'm being silly

 

[Adizziedoll]

I made a reply, 2 actually, to this thread a long time ago, and it hasn't been posted yet. Just curious if this one will go through?

 

[BusynMember]

Take thee to a neuropsychologist. The repetition of certain phrases is so Autism Spectrum Disorders (ASD) that it almost shines Autism Spectrum Disorders (ASD) in red ink. Bet this kid is on the autism spectrum and is way wrongly diagnosed. My son is Aspergers/high functioning autism (and doing great because of awesome interventions.) His first diagnosis was ADHD/ODD. A child psychiatrist unfortunately is not really always a good way to go because they are always looking for their field...a mental health issue, like ODD/CD or bipolar. A neuropsychologist is a psychologist with extra training in the brain. Your child will be tested in all areas from 6-10 hours and you will have a much clearer picture of what is really wrong.

My son is sixteen. He never came close to CD. In fact, as soon as his frustration with understanding the world was addressed, he became a very compliant, hardworking, beloved child (even in school!). I suggest a second opinion and from a neuropsychologist. It is hard to detect Aspergers...sadly, it often gets missed until it becomes more obvious in the middle years. It's best to get it early so you can start interventions early.

My son can remember anything by rote. An amazing rote memory is an Autism Spectrum Disorders (ASD) symptom. He taught himself to read by sight! Where he has trouble is give-and-take conversations (he tends to monologue or copy what he hears on TV) and he has trouble with abstract thinking. These kids brains are wired differently and they are very concrete, every black and white thinkers. They need to be taught to think the gray areas.

 

[totoro]

Hi
I am in full agreement with a Neuro-psychiatric evaluation. Whatever his diagnosis ends up being he needs to be treated for his SX. The oral things are not by choice, they really can't help it. Think of it as an itch. With treatment they might be able to learn to develop their muscles and understand what and when they are doing these things and use other techniques to satisfy this need.
My Daughter K has been working on her multiple oral issues for years and it gets better and then worse depending on her stability or stress...
She works on social, spacial, body proprioception issues, weekly all of these things seem to never get better but they do inch by inch get better over time. (or so I have to tell myself)
She hurts herself, the dog and us. We can't leave her alone for a minute with the dog.
She can't really even walk across the street to get the mail. She can't wipe herself consistently yet and she will be 9 in July.


Treatment is the most important thing whether your child is medicated or not. Our other duaghter luckily still does need to be medicated. Hopefully never.
My older daughter K may be diagnosis'd as Autistic in the future. Her symptoms can be considered part of her Sensory Integration Disorder (SID) and BiPolar (BP) but there is just a bit more going on.
I don't really care, as long as she continues to get the help she needs, which if she is diagnosis'd as Autistic she will receive more services.
But, if your child is diagnosis'd with something like BiPolar (BP) or another Mental Illness, you want to be sure. Medications are vital for stability. My daughter would not function without medications.
Believe me we went as long as possible without medications. We have even stopped medications since just to see. Horrible idea.
Do not settle for a Doctor who you are not comfortable with. All of our Doctors work with BiPolar (BP), Autism and many other disorders. We make sure of this. Even our psychiatrist.

Good luck, also I would be pushy for all of the testing. Sleep, allergies etc.

 

[Adizziedoll]

Thanks guys!

So I looked up the neuropsychologist, realized that none of them take insurance and are expensive. Did any of you find that insurance will reimburse? I understand the importance, because if it is something like BiPolar (BP) or something else that he just really needs medications for, then obviously that needs to be known. I don't want to doom him forever by putting him on medication if he doesn't need it, but it would be worse if he really needs it and I don't get him the help.

My first instict for awhile now was BiPolar (BP) actually. The psychiatric told me they got rid of the diagnosis for young children? Or the testing? Something. It's interesting that your child has the same problem with wiping after going number 2, and she's almost nine. He actually didn't start sucking his thumb until he was around 4 years old. I just can't get him to stop, I believe it calms him down if he's in a manic state, angry, ect. He wasn't really delayed in any of his speech or walking either. HE was an extremely fussy baby however and just couldn't be put down. He hasn't slept a full nights of sleep since he was born. He had a bad case of GERD, and always complains of tummy aches or his limbs hurting. He does say to me "My brain doesn't work right" or the "bad guy is inside me", and he also has this "invisible brother" that he has wierd ideas about death with, and will blame things on. Nothing is his fault. He trips, it was your fault. He bites his tongue, it was my fault because I was talking. He'll argue about the craziest things ... "You're going to drive back towards so-and-so's because we just went around in a circle" ... ??? ... "No sweetie, I'm driving home now." "NO YOUR NOT!!!" Things that I'm telling him I'm doing and I'm just wrong.

I don't know, and I know you guys don't know for sure either. It's nice to just write it all down though and know that someone who understantds will read it. All I know is that I do need to fight for the correct diagnosis here. The more I thought about this ODD/CD thing, the more I realized that it IS only explaining not even half of my son's behaviors, and is more like a symptom of something else.

 

[tictoc]

Hi Dizzie,
neuropsychologist evaluations are expensive, but it seems very warranted here. I agree that your son did not get a great evaluation and then got even worse care from the pediatrician. My son got his first neuropsychologist evaluation nearly 18 months ago and we still have not been reimbursed by our health insurance (and we just had another mini-evaluation before his IEP). The cost is daunting...There will be no vacation for us this summer and husband will continue to drive his car without fixing the A/C. But, what can you do???

Diagnoses ARE difficult at such a young age, but you need to have a diagnosis that you feel reasonably comfortable with so you can start therapy and/or medications. Here is one example that a neuropsychologist can help with: Your son's repitition of words and arranging bottles by color does sound Autism Spectrum Disorders (ASD)-ish, but it also could be a symptom of Obsessive Compulsive Disorder (OCD) (needing to say the word just right, needing organization). We don't really know. But, a neuropsychologist will take a comprehensive history and do extensive testing and can tease these things out. And, it is very important to know the difference. If those particular issues are Obsessive Compulsive Disorder (OCD), they can be helped so much with medication. But, if they are Autism Spectrum Disorders (ASD) symptoms, then treating it as Obsessive Compulsive Disorder (OCD) won't help (and, I must say, a person can have both).

I'm using this as just one example...None of us here can really know. But, getting a good evaluation will go a long way towards getting you off to a good start. And, then you can decide whether to give medications a try.

And, "poor prognosis" for a six year old??? That is just asinine.

Good luck.

 

[nvts]

Hi Ginger! Check and see if any of them have a sliding scale for doing the testing for cash. Quite often they run a scale based on your income and the number of people it's supporting. Either that or you can check with your insurance to see what type of testing they do cover. Then you can have testing done that will give him a more acceptable diagnosis, and see if there's a way to have the full neuropsychologist done. Here's another idea. You have a suspicion of autism. Call the different autism groups in your area and see if they have recommendations or psychiatrists that work with their clients that could give you the evaluations at a lower rate.

You could also check into Medicaid waiver and see if they will cover you for a full neuropsychologist.

Just some ideas!

Beth

 

[confuzzled]

Thanks guys!

So I looked up the neuropsychologist, realized that none of them take insurance and are expensive. Did any of you find that insurance will reimburse? .

its worth calling your insurance to find out if you have out of network or some other type of benefit that would reimburse you some of your out of pocket costs.

tread carefully--you want diagnostic testing, not "educational testing"...my insurance denied certain portions, using exactly that excuse--that they were of
an educational nature. (the nepsy?!--we did the actual edu stuff thru the school--but apparently the doctors office didnt get the memo and used the dreaded
educational word in preauthorization)

if nothing else, its worth requesting an evaluation through the school district if you havent had it done...while limited, its better than nothing.

and personally?

i'd find another psychiatrist. immediately.
(yea, i know its easier said than done!)

good luck!!!