difficult child with ADHD and Childhood Onset Bipolar Disorder (COBP)

[BizzyMama]

Hi all, I'm new here. I hope I'm posting this in the right place, it looked the most appropriate to me.

My son, who will be 9 in April, has severe ADHD and also Childhood Onset Bipolar Disorder (COBP). He's been a struggle to deal with since he was a baby, but the last 4 years have been especially trying. He had to repeat kindergarten and is now in 2nd grade where he spends most of his days in ISS. When he's not in ISS, he never gets recess and most of the time he isn't allowed to go to the class parties. His biggest problems at school are arguing with the teacher, being disrespectful, talking and playing when he should be working, refusing to do work, having meltdowns when asked to do anything, and always needing to conveniently go to the restroom for 20 minutes whenever it's time to work. He has real trouble concentrating with distractions in the classroom and actually does better when he's in ISS. But his teacher is so overwhelmed with his behavior and so of course she's going to be mean and punish him. Now he doesn't like her, which makes him even more difficult for her to handle. I have actually been considering putting him in a little private homeschool where there is only 4 other students and my aunt (who raised me) is the teacher.

When he was 5 I took him to his first P-DR who told me that he was mentally ill, would never lead a normal life, and would probably never amount to anything. Needless to say, I quickly found a second opinion. We went through several doctors before we ended up where we are now and I'm starting to get fed up. We have tried vyvanse, concerta, focalin, adderall, intuniv, and risperdal. The risperdal is the only thing that's ever seemed to have any positive impact, even though its effects are minuscule All of the stimulants only make matters worse. And the intuniv only makes him want to sleep.

The last couple of months, he's been going into these rages, where he screams and cries for a while, sometimes hours. And the rage is always followed by an emotional meltdown. When he gets like that, I can't get through to him, it's like talking to a brick wall, and he'll tell me over and over "I'm the worst kid in the world!" or "You hate me so much, no one loves me!" And no matter how reassuring I try to be, I just can't get through. His P-DR doesn't seem to be concerned with these episodes he's having. They just want to give him more of the same medications they've been throwing at him.

Any suggestions on where to go from here? I'm considering changing doctors again but we've been going there for 3 years and my son has gotten really attached to his counselor. I don't know if it would be a setback for him or if it would be a good thing.

 

[Liahona]

Welcome to the best place ever. Yes, I think you belong here.

Does your son have an IEP with a behavior plan? I forget what they call them in TX. They don't call it an IEP.

And what does Childhood Onset Bipolar Disorder (COBP) stand for?

We've also gone the rounds with psychiatrists. Trust your gut and keep records of what each medication did. Oh, I need to do better at that myself.

Again welcome.

 

[buddy]

I'd suggest a comprehensive evaluation. A neuropsychologist is a specialized dr. Who evaluates what the brain - behavior relationship is.....they are long involved evaluations. A typical psychiatric often only considers adhd, odd, anxiety, and other than adhd, only mental health disorders.

Mental health may be an issue or he may have things that often go with adhd and can make learning very challenging. (Auditory processing disorders, subtle motor problems, visual processing problems, sensory integration disorder, on and on....)

Or he may have a neurological condition that has adhd-like problems as a symptom. (Autism, genetic conditions, learning disorders, brain trauma.....etc)

Psychs, pediatricians, and others often will say we don't need these big evaluations but they work for you. So, don't ask, in my humble opinion you tell your primary care doctor you know something is wrong and adhd does not cover it...demand a. Neuropsychology evaluation.


If you can't find a neuropsychologist, a developmental pediatrician should be sought. They often have teams of people to do a comprehensive evaluation.

Ok,.now school....(can you see the steam coming out of my ears?)
They themselves should have started this because its law but patents can too.....and in my humble opinion in your situation it's critical!

Put in writing, a letter that says you are requesting a comprehensive evaluation for special education services. Even if he is doing ok in a academics, his education is being interfered with daily. Include a request for a functional behavior assessment. Send copies to the special education director and the principal. Mail them return receipt (registered) because there are legal time lines for them to respond.

If they say no, it has to be in writing explaining why and then you fight (we can help)
If yes, they propose an evaluation plan....make sure it covers everything.....(can come here to check) and they have a time limit to complete the testing.
Do this now because this takes two yo four months! You don't want school to end.

Any child even suspected of having special needs is protected in some ways. This punishment strategy is NOT working. Why? He does not have the skills to do better.

The legal mandate is to use positive methods to change behavior. But, that must include teaching the child what to do. Skills must be goals to work on. Just saying pay attention and you get a prize is NOT a good plan. The evaluation will help identify what he needs.

The neuropsychologist can take a while but that will help guide things. Start the process now.

If you want to, you can share more about your child and we can give ideas......

How was his birth? Eating? Is he sensitive to sounds, smells, tastes, touch? Does he play with kids his age? How does he play....copying, chase games, lining things up.....? Does he imitate? How's his sleep?.....
Anything you can think of......

Behavior is communication. Your son sounds like he is trying to escape things that are too hard...both physically (goes to bathroom) and mentally ( meltdowns)
My heart breaks for him and I'm beyond frustrated that the teacher and principal are not seeking the appropriate services

 

[BusynMember]

I'd be looking for a new psychiatrist. If your son isn't better after seeing him for three years, he's missing something. Looks like he is over concentrating on the ADHD, and ADHD medications can cause the bipolar to really ramp up. As much as he likes the counselor, the counselor hasn't made him better.

As for school, he should get an IEP so that he stops being punished as a "bad" kid and gets seen as what he is...a child with disabilities who needs help and extra attention. I agree about the neuropsychologist.

 

[buddy]

I'm not sure she means bipolar. I think that's a breathing condition? Chronic bronchial pneumonia? She didn't clarify.

 

[BizzyMama]

Childhood Onset Bipolar Disorder (COBP) is Childhood Onset Bipolar Disorder. As far as getting him extra help at school for special needs, I've already tried everything I can. The school says they can't put him in a special needs class or give him any extra help or treat him any differently than any other kid until they get something from his doctor stating that's what they should do. I talked to the dr about it and he said that my insurance wouldn't cover the testing that would need to be done. I really wish I could go out of pocket on the expenses but I just don't see how I could make that work and still feed my children! And that's why I had been considering putting him in the private school.

He eats like a pig, and never gets full. He sleeps great, although he has a lot of nightmares. He plays well with other kids, and is always considered the jokester or class clown. As far as his birth goes, i was in hard labor for 3 days before he decided to finally come out into the world. It was rough, but what would that have to do with anything?

 

[TerryJ2]

Hi BizzyMama. Welcome.

I would still consider a diff psychiatrist. I realize that since the stims seem to be making your son worse, that could be a red flag for bipolar, but since he's only 8, it's really hard to make a definitive diagnosis at that age.

I would make a list of all the medications he's been on, like a chart, and all the side effects, so that you can present it to the new psychiatrist.

Also, he needs to have an IEP, I agree. That teacher is overwhelmed. She is getting fed up and needs help. So does he. I'm not sure that homeschooling will help, since smaller numbers usually help, but lack of skill set with-teachers is the main issue. Unless the homeschooling moms have Special Education training, it won't help.

I don't think hard labor for 3 days is an issue unless there was oxygen deprivation. What did the discharge papers say?

Is there anyone in your family or your husband's family who is bipolar? Who is an alcoholic? Who is hyper or who sleeps all the time? Any red flags at all?

 

[buddy]

Oh my good gosh, your school is breaking the law!
I got an Advocate and many here have done that.
The only connection between medical and sp ed is that sp ed must consider any medical info but it does not determine anything. There are federally determined educational categories and states have to follow them but can offer more. Emotional and behavioral disorders covers the bipolar and other health impaired includes adhd.
Have you ever written the request and received a written explanation? If not start there. It's the law. They are interfering with his right to fape (free appropriate public education).

 

[HaoZi]

The risperdal may not be the right medication for him either - he shouldn't be raging like that so constantly on it (also a medication known for constant eating). My daughter had suicidal rages on that medication at the same age and landed in the psychiatric hospital on that one. Wasn't pretty and scared us all (school included). I also agree the school isn't doing right by him, you need to request in writing, by mail, return receipt requested, for an IEP. This puts them on a federal deadline. Also get your son an advocate to make certain the school does right by your son, because I don't think they will if you don't have one.

 

[Bunny]

WElcome to our little corner of the Internet. His eating everything I sight could be a side effect of the risperdal, which acts as appetite stimulant. My son is on it and the psychiatrist keeps a close eyes on his weight gain and sends him for blood work every six months to keep an eye on things. That being said, if he is still raging while on it, that means either one of two things: it's either the wrong medication for him, or the dose is too small to be effective.

As for the school, reading your post must makes me want to scream. Seriously! Unfortunately, they won't do anything that is not I writing. You need to send them a letter, certified, asking for a comprehensive evaluation. My school won't help my easy child because his disabilities are to effecting him on the classroom, however, your son's ability to function in a classroom is clearly limited and they MUST help him.

 

[whatamess]

The school can't treat him any differently?! They already are by keeping him in in-school suspension. He needs to get an evaluation. and IEP set up asap! Your state department of public instruction has a website with information about special education and you need to be informed very quickly about the processes necessary to get services for your son: http://www.tea.state.tx.us/index2.aspx?id=2147491399

Has anyone ever pondered autism spectrum disorder for your son? The 'moods' associated with BiPolar (BP) definitely cross-over to Autism Spectrum Disorders (ASD).

 

[BizzyMama]

Thanks everyone for all the advice. You have all been a great help. I will get an IEP asap.

TerryJ2- My son's dad (who I am not married to) has bipolar, borderline personality disorder, he's an alcoholic, and he sleeps all the time.

whatamess- about 2 years ago, his psychiatrist said he may have asperger's syndrome but that my insurance wouldn't cover testing for it. But one problem that my son doesn't have is making friends. He can make friends with anyone and everyone who crosses his path, and I think that's the opposite of asperger's?

buddy- What is an advocate and where do I find one?

 

[buddy]

Hi Biz, It's kind of confusing about Aspergers or Autism Spectrum Disorders (ASD) and friends. Many have loads of friends, many want friends but struggle, many prefer a friend, and some like to be alone. And the friendships are sometimes only with older or younger, or what we'd call more casual friends (my son connects to tons of people but has no one to call or go places with. All socialzation is done through groups I arrange or during school. He has lots of friends in these places though )

There are many symptoms and many combinations and some people lead essentially typical lives, even getting married and having successful careers.

Now, advocates. They come in different places and types. Your state department of ed should have a list as should your district sp ed dept. In our area we have a nationally known parent org that has branches in some states......they may have resources to find other advocates (PACER) and the website is a reference for sp ed law and procedures. Lots of forms for how to write letters too.

Most recently I used legal aid, the Disability division has a sp.ed. advocate. It is free and saved us!

There are also paid advocates, some are lawyers. Be careful and know what you're getting with these folks. Some are amazing and some just offer advice....costs can be reasonable to outrageous.

I've always used free advocates and they've been wonderful. Iprefer those that will actually attend meetings with me.

 

[TeDo]

Hi bizzy. I've been waiting to respond since you were getting such great suggestions for so many people.

As for the testing for Asperger's, it doesn't have to be done by an autism specialist (although that would be the best). My son was diagnosed by a knowledgeable PhD level Child Psychologist. Actually, ANY psychologist can give you the forms to fill out and spend a couple sessions interacting with him. You don't HAVE to go to a specialist to get the diagnosis. In fact, even any average, run of the mill psychiatrist can diagnosis it. Why won't his psychiatrist diagnosis it???

Absolutely put the request for an IEP in writing. Here's how I worded mine. "I am requesting that (difficult child 1) be evaluated for special education services. He is having great difficulties at school that are affecting his education as evidenced by frequent disciplinary actions and slipping grades. I am requesting thorough academic, psychological, behavioral, emotional, Speech Language Pathologist (SLP), and Occupational Therapist (OT) evaluations." Put it in an envelope and send it Certified Mail with Return Receipt Requested. The Certified guarantees they get it and the Return Receipt is you physical proof that they did and WHO signed for it just in case they claim they never received it (many schools have tried this). The date they physically receive the request starts the Federal timeline for them to complete the process.

As for making friends, my difficult child 2 has absolutely no problem making friends. He has many but non that would be considered best friends. He spends days on end with one or two friends but then moves on to other friends for a long period of time and then on to others ..... He's very social but doesn't get the "rules" of friendship. Instead of doing what the other person wants, difficult child 1 moves on to different friends based on what HE wants to do. For example, he has some friends that go fishing almost every day during the summer. If difficult child 1 feels like going fishing, he hangs with those friends. When he's tired of fishing and wants to play video games, he has a friend that is a video game playing couch potato. Get the idea? What are your son's friendships like?

Welcome to our little corner of the world. This place has been my lifesaver. It has gotten me and my kids to where we are now and gotten difficult child 1 the services he needed. These parents are the best source of practical and experienced knowledge on the planet.

 

[busywend]

Yes! Send that letter NOW! They have specific timeframes they have to respond to you by, schedule the evaluation, perfomr the evaluation (free to you) and provide results. Get educated. Your son needs this very much! If you are having trouble, check out the Special Education section of our site. If you get stuck contact SHEILA (she is a moderator for the site) or any mod can try to get Sheila and you connected. I can not stress how serious this is. Your schools response IS illegal. They are going to fight you every step of the way. You must educate yourself on this!

 

[busywend]

By the way your school is legally required to provide you a list of advocates in the area!

 

[BusynMember]

Schools never ever gave me a list of advocates in the area. I got them by calling the Dept. of Public Education in my state. I suggest that.

I'm "iffy" on Aspies with a lot of friends. I never met one who did...in our Autism Spectrum Disorders (ASD) group, the Aspies tend to have no friends or maybe one...it's kind of sad. If he can make friends easily, I agree that that isn't normally an Aspie trait. But do have him tested for everything. May as well. There is atypical Autism Spectrum Disorders (ASD)/Pervasive Developmental Disorder (PDD)-not otherwise specified...Aspergers isn'st the only form of Autism Spectrum Disorders (ASD).

 

[buddy]

I just met four adults who are classically aspie and one belongs to campus social groups and the group of 4 hang out. Two were finishing shared stories for eachother....all have had ongoing social skills training. I thpught one was a class aide! I think their definition of friends is different in some ways but I really believe they can have friends now.

Anyway when kids are young they can make "friends" easily thru chase games and other things, the type and levels of play along with the back and forth conversation has to be analyzed before you can really figure it out. It is often more superficial than typical peer level friends.

 

[buddy]

Advocate lists are at the bottom of the parental rights forms that come with all due process papers in every district I've lived or worked in here. Maybe check those forms in case its listed.

 

[HaoZi]

Mine is Aspie and has friends. She has school friends and a friend that is a neighbor, but she's gotten lots of social skills help, too. She's always been gregarious and outgoing, though, so in her better moods she's quite charming (even if she does tend to stick to certain subjects). She tends to find friends that like the same things she does.