Really in need of answers

[Nikki88]

My 8 year old has been diagnosis with ODD/ADHD. the last year and a half has been nothing short of horrible. She's been on a number of different medications, and nothing is helping. She can't take stimulants, so she's taking strattrea for the ADHD, also depakote and clonidine for aggression. And just came off ability, swapped for depakote.
Nothing is working, to the point where everyone is wondering if she even has ADHD at this point and its not just the odd. We're starting our 2nd round of intensive inhome next week, and well I'm at my whits end, between dealing with the school and the behaviors.
I just have that mom feeling that something she's taking is not right for her, and not really sure what my next step should be!!!

 

[InsaneCdn]

Who gave that diagnosis and how long ago?

My experience? most of the time, ADHD is either a "starting point" and a raft of other dxes also exist, OR it's a mis-diagnosis and it's really something else (Autism Spectrum Disorders (ASD)/Aspie for one)

Most people with "real" ADHD... respond to ADHD medications. And ADHD does not have "aggression" as one if it's symptoms. Impulsive, yes (usually).

Has he ever had a comprehensive evaluation by a top-end team, or a neuropsychologist? the 6-8 hours of testing kind of evaluation? How about an Occupational Therapist (OT) evaluation for sensory and motor skills issues? Speech Language Pathologist (SLP) for Auditory Processing Disorders (APD) screening - especially the "newer" ones like auditory figure ground and auditory discrimination.

There is more going on.
You can't treat ODD... which is why so many of us fight that label. Or at best, it's a placeholder, indicating something IS wrong... but if that's the case, the process of finding out what really is wrong, needs to continue.

Are you keeping a journal or log daily? routines, behaviours, triggers (or assumed triggers), etc?

 

[BusynMember]

I agree with IC. I would take her for additional testing. ODD is a very unhelpful diagnosis that can't really be used. It just means "your child is defiant." It's kind of a non-diagnosis used until they find the actual cause of the defiance. At least me and many of our board members believe that.

in my opinion it is best to get testing done by a neuropsychologist to find out all issues going on and what is causing the defiance. That way you can get onto a rode of help rather than just despair. Sounds like beyond ADHD to me, like more than that is going on. Can you tell us about her early development and how she does in school? Any chaos in her early years?

 

[Nikki88]

Her diagnosis was about a year and a half ago.
We've had the school testing, and the normal assessments that they send home with ADHD.
i just got back from meeting with her intensive inhome team, and they seem to agree that we need to start at the beginning with testing her, she's always been very strong willed and now that she's being told no, she doesn't like it at all. Plus she gets frustrated at school and has a hard time expressing verbally how she's feeling.
My issue is that if she doesn't need the medications, then she shouldn't be in them, because they are not helping anyways!!! It's just so frustrating!!

 

[Hound dog]

School testing is not very accurate in most cases. It's best to have your own evaluations done by a private source......a neurospych is a good place to start.

If you've not done so.........I also like to rule out any possible physical contributors by having a full physical done. I don't mean the kind where she goes in and they see how much she weighs, how tall she is ect........I mean an actual complete physical.

For the new evaluations it would be a good idea to keep a journal of behaviors along with any possible "triggers" you happen to notice. This helps the docs get a better overall picture of your child........and helps you because it's hard to remember every detail when you're sitting in the office. Know what I mean??

Hugs

 

[busywend]

If I could do anything diffently.....I would fight for different school placement when my difficult child was 8. She never was going to learn at her ability using traditional teaching methods.

Figure out how she learns best.

 

[Nikki88]

She came off the strattrea two days ago, and is seeing dr tomorrow about depokote. Personally I want her off everything, and see how she resonds. We are going in for neuropsychologist as soon as they can work us in. I've had people tell me different things about testing on or off medications, and decided I want her tested off medications.
In the last 16 months, she's been on and sp on all of these I'm sure, rispadal, attaroal, concerta, Luvox, ability, strattrea, and now depakote. I'm done, shes 8 years old and until I can get some answers I don't want her on anything. I know some might not agree with that, but nothing is helping, and I'm not going to keep swapping medication ps for medications that make her worse.
*Thoughts?

 

[InsaneCdn]

I'm done, shes 8 years old and until I can get some answers I don't want her on anything

Read more: http://www.conductdisorders.com/forum/f6/really-need-answers-53745/#ixzz2TWdG8XvY

JMO but... without REAL, solid dxes, I would be highly wary of medications too, except if you can't survive until the neuropsychologist appointment.

Answers are critical, and medications DO cloud the waters, most of the time... the exception tends to be cases such as where there is a solid ADHD diagnosis, and some related testing works better if the ADHD kid is on ADHD medications that are working. For example, Auditory Processing Disorders (APD) testing is almost impossible on an unmedicated ADHD kid, because the degree of concentration is beyond what most of them could manage. Or a kid who is stable on medications for bi-polar... and you're testing for "additional" dxes... I think you get the picture.

 

[Nikki88]

Thanks!! I don't even think being frustrated at this point can describe how I am feeling.
when I picked her up from school today, they said she had a rough day, nothing else, which for them is typical ****. Last night she hardly slept, and was up every hour which is something we haven't seen before. Intensive inhome was out twice today, once to meet with me while difficult child was at school so we can start to work on new behavior mod plan and then they had to come back out in the afternoon because difficult child was completely out of control. Hitting,screaming, yelling, throwing stuff all because she couldn't have her kindle back (she got grounded from it last night) and for once I was sticking to my guns on it. I understand that she was sleepy, coming off medications, and possibly on a medication that is just making things worse. But a big part of how we got here is me not following through and giving in.
Inhome did suggest possible hospital while we got her off medications, to which I quickly said I don't want to go that route, since she spent 10 days last summer and it wasn't much of a help and we still don't have clear answers. And I don't like the idea of medication changes without me being there. Is it a pain and frustrating to watch and deal with meltdown after meltdown, yes. But they said they supported my choice and that they would be here whenever we needed them, even if it was the middle of the night.
i know I'm no dr, but I just feel like I know my child best, and something's not right medication wise. It's like my gut is telling me that she needs behavior mod, and strict rules, and honestly I need to see for myself how she is acting with no medications.
Were having tons of school issues, which is a whole other post in its own, they are just horrible to deal with. difficult child stars a modified day tomorrow, for the rest of the year, only having to go from 930-130 each day. So we will see how that goes too.

 

[BusynMember]

Why not schedule an inttensive neuropsychologist evaluation? That's about eight hours of testing and should give you some good, solid answers.

I agree that psychiatrists throw random medications at our kids way too often. Drugging a kid is no better than the child going without. The medication needs to target specific disorders and only be part of the treatment. I know by first hand experience that the wrong medication can make some of us even worse and that some people do better with interventions rather than medications. But if your c hild does need medications, I wish our psychiatrists were a little more cautious about diagnosing and prescribing.

Smart mom in my opinion. But your child DOES need a total evaluation, You wouldn't be here if your child were a typically wired kid. You know your child is different and needs help.

 

[TerryJ2]

I totally agree with-the others; she needs a neuropsychologist evaluation. It's a day long, sometimes two days. And it's not done by the school. It can takes months to get in so make the appointment now!
I am so sorry for what you are going through.
Two things jumped out at me from your description. One is the lack of ability for her to describe what's going on. That's a processing disorder. The other is that she's up all night. That could be the beginnings of bipolar or something in that area.
Some of the medications she's on may work when she's a teenager. The medications you've tried are not designed for kids. All of us here have families that are working experiments for the pharmaceutical industry. (I'll get off my podium now. ) But in the end, our kids do need medications. It's just that we don't know which ones right away.
What was your daughter's reaction when she was on stims? No change at all? Or rages? With my son, his reaction was immediate--I mean, about 1/2 hour--and he was speaking in complete sentences, and sat in a chair and had a conversation with his sister for the first time ever! Stims work quickly and they wear off quickly.
Depakote also gets out of the system pretty quickly, so that's a good thing if you want her off of it.
The hard part is going to be living with her while you're waiting for the neuropsychologist appointment. I feel for you!
Try not to punish too much; she really can't help some of what she's doing. Especially if she's shouting a lot. She can't really hear how loud she is and has no idea how it impacts other people. Just create guidelines and follow through. For ex, "You're shouting. Let's whisper for a while." If she says she doesn't want to, then she goes to her room for a few minutes and can come out when she's able to modulate her voice. She'll ramp up again in five min, but at least you can tell her, "That was a good start. I really like hearing your voice like that."

 

[BusynMember]

I'm going to disagree that all of our kids need medication. Sonic, who is on the autism spectrum, always did worse on medications and well with interventions. And our drug addicted teen did not do well on medications either because she didn't really need them. She needed to STOP using drugs, not be given drugs that she was already using to get high and many teens do use ADHD drugs to get high. They crush them in pillcrushers and snort them alone or with other pills.

Many spectrum kids do not take medications. I hear it is at 50% who are on medication. Now if it's bipolar, yes, you need drugs. That is why the right diagnosis is so imperative. But I will not forget that my own son was MISdiagnosed with bipolar and on so many horrific medications that did nothing but give him side effects.

We as parents need to be careful.

 

[InsaneCdn]

Have you ever read "The Explosive Child"? (Ross Greene, I think).
It's a different perspective on parenting our differently-wired kids.
Many of us have benefited from the perspective, even if the methods don't always apply.

 

[InsaneCdn]

On medications in general... they work for some people, they don't work for others... and for a few, they are a disaster. Pick any one medication, or any combo of medications, and the equation holds.

Every "body" is different. medications affect our body chemistry. IF we can find the right medication(s) at the right doses to correct a real chemical imbalance in our body... medications work wonders. But... that's a big IF.

For our family? medications were and are absolutely vital. But we found the right ones, and that takes TIME, and a really good psychiatrist

 

[busywend]

You at one point felt medications were a good idea. I suspect you had good reason. It is frustrating when medications make things worse and even can become confusing. I will guess they started with a stimulant? My gut tells me she needs a mood stabilizer. What is she taking right now?

 

[busywend]

Just went back and re-read. I see you are taking off all medications....slowly, that is good. A new evaluation is certainly in order.

The gact that you have 'intensive in home' makes me think things are or have been much worse than you have stated here. Many have fought for those services and have been unsuccessful.

 

[Nikki88]

She spent 10 days in the hospital when we tried her on stims, it was a nightmare!!!
We just got back from the Dr, I was really surprised because I've never really in all of this had a dr listen to me, they kinda brush you like I'm an MD, and your just a Mom. When I told him that she's been on all these medications in the last year and a half and none are working that I feel like at 8 years old her body needs a break and she's also had a year and a half to mature and that I think it's super important to see how she acts without medications, he was like you have really good points there and it can't hurt to try. I thought I was going to fall out of my chair.
Weve been really lucky with intensive inhome, honestly they have been a godsend. She has a great team, and are really supportive of the changes and said they are there to back me up every step of the way, so I'm really thankful for that. I know that it's most likely not going to be easy, but I just felt so strongly that we need to try this.
They sent in the referral for neuropsychologist and told the office it is kinda urgent, since she goes to school year round and only.has 5 weeks off and we really want her as stable as possible when school starts back because we have enough problems with them as it is!!
So today was a good day, hopefully she will do good off her medications, but I'm totally prepared for the worst too!!!

 

[Nikki88]

Just went back and re-read. I see you are taking off all medications....slowly, that is good. A new evaluation is certainly in order.

The gact that you have 'intensive in home' makes me think things are or have been much worse than you have stated here. Many have fought for those services and have been unsuccessful.

it took her being in the hospital to get inhome, and trust me I begged and begged for it before things got to the point that she had to go the hospital, basically putting her in was the only was to get inhome. We're on our 2nd round, mostly because I kinda slacked off after they left, and we were lucky enough to get the same team back!
We have alot of issues with the school, her resource teacher is amazing, but the behavior specialist is a total nightmare. And so it's nice to have them as backup when dealing with school stuff too.
We are trying a different type of behavior plan with her this time that everyone thinks is going to work much better to suit her needs, so my fingers are crossed.
I did learn that I better stick with the program after they discharge her though!!

 

[DDD]

This is NOT my brightest evening so I may have not gotten all that you shared..sorry. on the other hand, you really need to have a full neuro/psychiatric evaluation so you will have an actual direction for helping your child. The results of those tests made a MAJOR change in our approach to difficult child#2. Hang in there and seek the full evaluation and follow up. Hugs DDD

 

[Nikki88]

This is NOT my brightest evening so I may have not gotten all that you shared..sorry. on the other hand, you really need to have a full neuro/psychiatric evaluation so you will have an actual direction for helping your child. The results of those tests made a MAJOR change in our approach to difficult child#2. Hang in there and seek the full evaluation and follow up. Hugs DDD

Yeah, we're trying to get her in ASAP, because she goes to school year round, and so she only gets 5 weeks off in the summer and are really trying to have go into the new school year as stable as possible. The schools a total pain, and other then her resource teacher and principal we would have already moved her. The behavior specialist for the county is a total nightmare.