Not sure what to do here...

[IT1967]

When I first joined this board about a month or so ago, it was Thanksgiving weekend. My daughter wasn't on any medications. My son was just on Intuniv. It was a few days before our first appointment. with-the psychiatrist. My daughter wasn't functioning in school or at home. Explosions and meltdowns over anything and everything. Especially against each other. My kids just fought and fought and fought. Neither of them was happy to see the other one happy. Neither one would agree to share or let the other pick a show. They're almost 10 and 8. It was a hideous day for me. Trying to mediate them all day long with-NO success. Finally, I lost it. I screamed and got angry and said things I shouldn't have said.

Fast forward to today. My daughter is on Risperdal and recently added in Concerta. My son is on Intuniv and Concerta. Guess what? It's like Groundhog Day over here. It's been nothing but fights and meltdowns and screaming and crying all day. Trying to mediate them all day long with-NO success. Finally, I lost it. I screamed and got angry and said things I shouldn't have said. It's been like this the entire vacation. WHY am I giving my children these dreadful medications when they DON'T work?!!! I'm going to call the dr. tomorrow and ask about weaning them off it all. I mean, after some improvement for my daughter for what? a few weeks? and then to be back here? It's done nothing for me, so why subject them to these horrible drugs?

Medications aren't working. Counsellors aren't working. Trying whatever every book out there suggests isn't working. Trying to explain to my children how badly their actions are hurting themselves, my husband and I and everyone else in their path isn't working. This is my horrid life. I'm watching all my friends enjoy watching their kids grow up and seeing what wonderful people they're turning into and I feel like I'm trapped with- 8 and 10 year old screaming toddlers. They've never matured past that stage. I feel terrible saying that I literally cannot wait for them to go back to school. I am so lost right now.

 

[JJJ]

(((Hugs))) We all have those days. medications don't guarentee all good days.

It would help if you would add a signature with their diagnosis. What have they been diagnosis with? who diagnosis them?

 

[DammitJanet]

Well hello. I dont know exactly what diagnosis your kids have or who did the diagnosing but if you are fairly new to this and these are the first medications your kids have tried, well take heart...all is not lost. You are not doomed to a life with two screaming brats.

I would try getting them seen by either a neuropsychologist or a full workup at a children's hospital for a multi-disciplinary evaluation. That why you will get a much clearer picture of exactly why your kids are behaving the way they are.

The medications that they were prescribed might not be the right ones for whatever is wrong...or it might not be the right dose. Intuniv is sometimes used for ADHD but it is an odd one to use right off the bat unless there is a reason Im not aware of and there are lots of stimulants other than concerta to try. They all dont react the same way in the same person. And just because someone looks like they have ADHD doesnt mean they have ADHD. Thats where getting the full neuropsychologist or multi-disciplinary evaluation comes in.

Dont write off your entire future just yet. Do some more digging and I think you will find out life can be smoother for all of you.

 

[IT1967]

I'm sorry, I have to set that up and get up to speed on the abbreviations. Both kids are gifted, have ADHD, Generalized Anxiety Disorder, and ODD. My daughter's is more extreme than my son's. He holds up pretty well at school and with-friends. My daughter has deteriorated a lot this year and has been having lots of meltdowns at school, with-friends, at events, etc....

 

[IT1967]

Oh, and we ended up on the current medications because my son had tried several stimulant ADHD medications with-intolerable side effects. So we moved to Intuniv which has helped for him. As for my daughter, we had tried her on 20mg. of Prozac with-minimal improvement before moving onto the drugs we're trying now.

 

[BusynMember]

I'm thinking that because the stimulants don't work and because your daughter's behavior is so extreme that they were probably both misdiagnosed. Have they ever had a complete neuropsychologist evaluation? It is very common for ADHD to be the first diagnosis (along with a slew of others). But it is equally as common to find out that the first diagnosis was/is wrong. Before you can really know what is going on, both kids need a total evaluation and in my opinion neuropsychs do the best jobs. Therapists, counselors, and social workers along with educators and school employees tend not to get it right.

We got somewhere when my son was evaluated for ten hours by a neuropsychologist. He found things everyone else had missed and it was uphill from there. Did any of your kids have any delays or quirks as infants/toddlers? Do they know how to get along with their peers? Any psychiatric problems on either side of their genetic family tree, even if dad isn't in the picture? Even if dad never raised them, he did deposit 50% of his DNA before he left.

Good luck and I hope you do evaluate the kids. It can make a huge difference. Sounds like right now the prescribing doctor is just throwing medications at them and crossing his fingers...without really being sure what is going on. Scoring high on Connors isn't just ADHD Although I have no idea what's wrong, have you considered they may have Aspergers? The constellation of diagnosis. your kids got is common for kids with Aspergers...it would explain a lot. At any rate...be proactive! Have a fresh evaluation! Psychiatrists don't tend to test. They diagnose by talking...not the best method.

 

[busywend]

If it has only been since Thanksgiving that your daughter is taking medications....why did they add another one so soon? That is irresponsible of the psychiatrist. You have to wait at least 8 weeks to know if some medications are working or even see some side effects. Don't give up on medications to quickly. It takes a lot of time to find the right medications. If your children's childhood is suffering, and it sounds like it is, then you have to help them in some way. Even if it means medications. I know, it is extremely scary and draining to worry about these things. Especially when you see others not worrying about anything at all.

 

[IT1967]

Both kids were not the easiest babies. My daughter, especially. She had colic and was delivered early because I had pre-eclampsia and she wasn't growing well inside me. But she hit every milestone on time or early. My son was a smoother pregnancy, but also small. Easier than my daughter, but not by much. Pretty much the way it has been ever since. He hit all his milestones at the appropriate age. I have wondered about Asperger's, and have asked the counsellor if she thought it was possible and she adamantly feels they are not Asperger's. She says she's treated kids with-that diagnosis and she doesn't think it is in my kids. She was pretty strong in that opinion. I've been dragging my feet on calling the neuropsychologist (got a name from a friend). I feel overwhelmed and just dread the thought of starting over again in this whole process. Not even sure our insurance would cover it.... I will put it at the top of my list. Thanks guys.

 

[HaoZi]

The principal at my daughter's old elementary school had worked with plenty of autistic and Aspie kids and didn't think mine was. I took her to be tested and not only was she an Aspie, she's even lower functioning than she appears to be (even to the doctor that tested her) because her intelligence shines through so much it belies her Aspieness in some ways.

You really can't be certain unless you get a real expert involved.

 

[JJJ]

It really takes an Autism specialist to diagnose (or rule out) an Autism Spectrum Disorders (ASD) (including Aspergers).

I'm confused why your son is on Concerta if he has had bad reactions to stims. Concerta is a stimulant. And any stimulant can increase anxiety.

 

[BusynMember]

Both kids were not the easiest babies. My daughter, especially. She had colic and was delivered early because I had pre-eclampsia and she wasn't growing well inside me. But she hit every milestone on time or early. My son was a smoother pregnancy, but also small. Easier than my daughter, but not by much. Pretty much the way it has been ever since. He hit all his milestones at the appropriate age. I have wondered about Asperger's, and have asked the counsellor if she thought it was possible and she adamantly feels they are not Asperger's. She says she's treated kids with-that diagnosis and she doesn't think it is in my kids. She was pretty strong in that opinion. I've been dragging my feet on calling the neuropsychologist (got a name from a friend). I feel overwhelmed and just dread the thought of starting over again in this whole process. Not even sure our insurance would cover it.... I will put it at the top of my list. Thanks guys.

All Aspies are different. Your counsellor should know this. Also, counsellors can not diagnose. They don't have the training. Try the neuropsychologist. See if your insurance will cover it. Right now you are going nowhere and I'd hate for that to continue. Your counsellors opinion doesn't matter any more than mine does. You need a regular evaluation before you can know for sure. We had social workers and therapists tell us that our son wasn't on the spectrum either. They were sure of it. They were also wrong. You deserve high-level help and relief from what you are living through. Your life and your kids lives should be and can be better than this.

Good luck

 

[Wiped Out]

First off gentle hugs. I have been where you are. With my son, nothing seemed to work, and if it seemed like it did it never lasted. He has been hospitalized 5 times over the years (3 of them were in one year and we were close to having him placed in a residential center). Finally, they tried a medication that has been working for a couple of years now. Is he still a difficult child? Does he still drive me crazy? Does he still have a long way to go? Absolutely to all of them!!! Still things are so much better and for us the violence is way down.

With my daughter we tried a couple of medications before finding a combo that is working. It has helped a lot and still things are not perfect but, again, they are better.

Hang in there, visit here a lot, and take care of you. Be gentle with yourself; do something for yourself and find some "me" time.

 

[IT1967]

Thanks guys. Really appreciate the support and advice. by the way, the counsellor is a Ph.D., so I don't know if that makes a difference in her diagnosis capabilities. I really like her and do think she's pretty good. You know, they can be such wonderful sweet bright loving kids, but things just spin out of control so quickly and in such a big way. ****sigh****

 

[susiestar]

The phd doesn't make any difference. Autism and other disorders are MEDICAL conditions and you truly need in depth testing and evaluation to diagnose them. You should ideally have a psychiatrist (md) and a psychologist working together with an autism specialist and a neuropsychologist (aka neuropsychologist - psychologist with very specialized training in how the brain impacts behavior - good ones do a LOT of testing) AND a neurologist all working together.

She may be a good therapist, but she doesn't have all the training that each of the others has, and the best evaluation uses as much info as possible.

One thing that may help that people don't think about is to have an Occupational Therapist (OT) do an evaluation for sensory problems. Kds who seek out or avoid certain types of sensory input can have problems in how their brain uses that input. The help for it comes from an occupational therapist (as does the diagnosis) and it is amazing. More and more kids with huge problems also have sensory issues and treating those can make the BIGGEST impact and does NOT involve medications. To learn more, read "The Out of Sync Child" by Kranowitz. It is amazing. i thought it was just 'catering' to 'brats' but learned super fast that no, it is kids who get overwhelmed by too much or too little of sensory input and that providing the right sensory input can literally help end the screaming days. Not 100%, but a whole lot. I think it is one of the least expensive, easiest to do types of therapies that has the biggest overall impact on the entire family and on the classroom AND it is one of the most overlooked and discounted therapies. I strongly recommend that you read the book and explore this.

by the way, just because the therapist has treated people with autism/aspergers doesn't mean seh knows what it wll look like in every person. The best autism doctor I have met told us that if you have 1000 patients with Autism Spectrum Disorders (ASD) (autism spectrum disorders), you have 1000 totally different patients with totally different looking presentations. It truly takes a specialist to diagnosis.

 

[InsaneCdn]

Just adding to the chorus... but ODD is a diagnosis that most of us don't like, and if your difficult child has been given that as an actual diagnosis, then it really means that there is something else going on and the person doing the evaluation doesn't know what that is. It's a trigger for a more comprehensive evaluation. (was for us, too).

Until you know far more about the full spectrum of what you are dealing with, medications are tricky. For example - ADHD medications can be great (ask my kids!). But... for some kids, they are a disaster. And if the child has a MI such as bi-polar, it can be double-disaster.

It took us FOUR supposedly comprehensive evaluations to get even close to the right list of dxes... and we're still not there (fighting for the next evaluation...) But the closer we got to a complete list, the more the interventions, accommodations and medications could be fine-tuned ... and effective.

medications that are fast-in-fast-out, can be adjusted fairly quickly. Most of the stims are like that. They can adjust the dose practically on a dime, but usually it takes a week or two to know for sure that it is working... or partially working... or a disaster.

medications that have to build up in the system? One medication at a time, at least 8 weeks (our psychiatrist prefers 3 months) to adjust dosages and know if it's working etc, before adding another medication. Rapidfire changes... are going to cause rapidfire problems!

It isn't easy. WE live with these kids 24/7, even when they are at school. Nobody else has a clue what we go through.

Oh, and that PhD? depends on what it's in. We had a PhD Social Worker who was a great therapist, but... no training on even screening for dxes. We had a PhD Psychologist who wasn't a neuropsychologist (which are really hard to find here)... and she was a great evaluator... and a bad therapist. It isn't the level of the degree... it's the type of training and the type of experience. Sometimes, a team approach works - some childrens' hospitals and teaching universities have them - where different specialties do their own testing, then put their heads together.

One way or another, ... you need lots of hugs and support while you figure this all out!

 

[IT1967]

Very interesting. My daughter's teacher thinks she has sensory issues and to a degree, so do I. Based on questionnaires completed by me and husband, and the teacher, the school Occupational Therapist (OT) felt she does have sensory issues, although she did no testing on her own. My daughter is an extremely picky eater, doesn't like loud noises in some settings... I have ins. coverage for Occupational Therapist (OT) and had postponed it because my daughter has so many after school commitments. Maybe I need to try to drop one thing to somehow fit the Occupational Therapist (OT) in.

 

[InsaneCdn]

Start with an Occupational Therapist (OT) evaluation... and you might as well include testing for motor skills as well, as Occupational Therapist (OT) does both. Ours took half a day to do the testing.

From there... it depends on the recommendations. Occupational Therapist (OT) therapy does help, but more for some things than for others. There are also accommodations and interventions that you can do - or be taught to to - at home. So, once you have the evaluation results, THEN you can figure out what to do with the schedule. Our Occupational Therapist (OT) worked with us carefully to find a timeslot that wouldn't be too disruptive. For some of his patients, he had the parent bring the child during what would be Phys Ed class... and the Occupational Therapist (OT) appointment counts as PE.

 

[IT1967]

My daughter would LOVE to miss PE! It's her least favorite special. Gah! So much to think about. Thanks again for all the suggestions and comments. It's made me feel a bit less out of options.

 

[InsaneCdn]

If you're pushing testing anyway... how about a third one?
I notice one of your daughter's dxes is ADHD... and... well...

ADHD is a really interesting diagnosis. There really are some people who are ADHD - period. Nothing else. Like my K2.
But...
1) ADHD usually goes with other stuff, such as:
- half the kids with ADHD have Developmental Coordination Disorder (DCD) (developmental coordination disorder)
- a large portion have LDs
- something like 70% of kids with ADHD + a Learning Disability (LD), have an Auditory Processing Disorders (APD)

2) An ADHD diagnosis may be incorrect. We're told that APDs (especially auditory figure ground) can "look like" ADHD. Many Aspie kids start with an ADHD diagnosis. Other dxes can also start with ADHD.

So... one way or another, the chances are stacked that evaluations will reveal "something else".

Screening for APDs - for the complete set (I believe there are 4 or 5) - may be useful.
Here, it starts with Speech Language Pathologist (SLP), then goes to advanced audiologist (not the kind that work in hearing-testing centers... this is a specific specialty).
No medications - just interventions and accommodations. But even just KNOWING that he was right all along made the diagnosis worth the hassle of tracking down testing. School also kicked in with technology assistance (personal fm system).

 

[JJJ]

Thanks guys. Really appreciate the support and advice. by the way, the counsellor is a Ph.D., so I don't know if that makes a difference in her diagnosis capabilities. I really like her and do think she's pretty good.

She can be an outstanding therapist and still not qualified to diagnose, especially Autism Spectrum Disorders (ASD). It is a different type of training.