more confused than ever

[Kjs]

I found this site about a week ago when desparately needing support. I just seemed to have jumped right in and started rambling without reviewing FAQ's. Now, after settling down a bit, I understand the many abbreviations used. Thanks for the patience. I have spent the better part of the last week reading every link sent to me. Printing it out,re-reading...Now I am more confused than ever.
difficult child's first visit to a psychologist was when he was two. Since then he has been tested by school in first grade, advanced a grade for challenging reasons. Tested again in fifth grade. Always told ODD, gifted. Very sensitive to sound, ex: french fry buzzer, basketball games, clocks, fire alarms...He would know which room the clocks were louder, he would basically shut down and cover ears when noises bothered him.
We were told by elementary school counselor and also psychologist he process information differently than the "normal" child. took us a long time to understand ourself that it is OK to be different. Many teachers only accept a particular way of doing things which sets him off in a tizzy.
After many years of power struggles, a severe panic attack/anxiety attack sent us to the psychiatrist. He put him tried him on prozac, then went to Lamictal. This seemed to calm him but still had huge issues with school, and anxiety.
After this past week took him back to psychiatrist. When I asked about the evaluations, he said >$6000 and would be a waste of money. Increased Lamictal added Lexapro. difficult child has now been awake for 4 nights (most of the night).
Now I am second guessing any need for medication. After reading the links about gifted children and ODD, I can honestly say he meets every single criteria. Both say no medication needed. Am I just trying to "fix" him because I can't handle it?? Is it us his parents who need the help?? His IEP/BIP have no positive issues, only negative which makes him react worse. I have done my homework and I am ready for Friday's meeting regarding new IEP.
He went to a counselor today. He said he likes him. Yeah. That never happened. Also since this is a new job, I found out more info on mental health/behavior insurance. Better than I thoughT. So, any of you who actually read this long drawn out post, do you think he should be on medication or is it just me thinking something can fix him. he has had no testing at psychiatrist. (does see neurologist due to migranes.) I will talk to neurologist about tests next week at our scheduled meeting.

 

[Marguerite]

Some kids do better on medications, some don't. It depends on what's wrong and also on the kid. If a child does not improve on medications, it doesn't mean that the kid is OK and that the parents are the problem - some kids just can't take the medications we have available.

Sometimes it's nobody's fault. This isn't about blame, it's about trying to tune in to the child's way of thinking and work with the child from there. Assessments can help by giving you a better idea of the way the child thinks, is all. There should be some way to get assessments done without it costing the amount you were quoted.

School meeting - if discipline comes up, try to steer them away from punishment-based discipline. Also make it clear that if he is being punished for something he cannot control, then it will undermine any gains he makes in other areas. If punishment is not teaching anything he doesn't already know, or if it is trying to train him into something he can't handle, then it is wrong and abusive. It is like spanking a baby for having wet nappies.
This is something that a lot of schools have trouble with.

Good luck at the meeting!

Marg

 

[SRL]

Has he ever been evaluated by an occupational therapist for Sensory Integration Dysfunction (now called Sensory Processing Disorder)? Those sound sensitivities sound very much as a child with Sensory Integration Disorder (SID) would respond.

http://www.tsbvi.edu/seehear/fall97/sensory.htm

If you're dealing with a gifted child, behavioral issues, anxiety, and hypersensitivity to sounds, you may want to look further into the Autistic Spectrum Disorders. It's frequently missed by specialists when children are young, especially when they are high functioning or atypical. Here are some sites for you to research:

http://www.aspergersyndrome.org/

Good luck with your search for answers and treatments. It's a hard time when your child isn't responding well.

SRL

 

[busywend]

I would like to know what issues or symptoms is the doctor trying to treat with these medications?

 

[timer lady]

Is difficult child aware enough of his own body/emotions/behaviors to ask him what he feels is going on?

Just curious if difficult child has any self awareness?

 

[Kjs]

Doctor is trying to regulate his moods. He can be so nice one second and in an instant go into a complete rage, yelling and screaming. Keeps everyone walking on egg shells afraid you might set him off. It is sometimes things that are said. He takes them the wrong way. Or a wrong "look".
He has consistantly told us that he MAKES himself mad because if he didn't he would cry, and he doesn't want to cry. (which he does a lot anyway because he is always getting yelled at)
He has told us many times "I can't help it"
We know certain things will immediately set him off.
If someone laughs AT him. If someone teases him due to a haircut or whatever.
If someone tells him he is fat. (93 pounds, 7th grade, 58.5") he has a 26 inch waist. he believes he is fat because kids tell him he is, so wants to quit eating.
He says he doesn't WANT to be bad. He says he doesn't understand why he does what he does, so how could anyone else.

I did explore autism, but he doesn't have any of those symptoms. Even took a little test and that said no symptoms.
He has always had complete eye contact, he does not like when things change. no repetitous behavior.
Sensory thing..He has no problem with touch, just sound.
I really feel I am ready for this school meeting. I know what I need to suggest, thanks to all of you.
I was a basket case last week. Thank you all.

 

[SRL]

Not all children who are on the spectrum or in the neighborhood of the spectrum exhibit all of the symptoms. I don't even believe that the sensory issues are on the actual diagnostic criteria but it's common for children to have sensitivities in one or more area--and that doesn't necessarily have to be touch. When I read through your posts it sounds like you've listed a number of things that could point in that direction, although they can fall under other disorders as well. Very resistant to change, no friends, inflexible, anxiety.

What has his speech development been like? Any early speech delays or differences such as talking like an adult? How about obsessive interests?

None of us know exactly what you're dealing with and all of us are simply offering suggestions based on what we've experienced or seen repeatedly here. When absolutely nothing else has worked and isn't currently working it means that years of time, effort, and money have gone down the drain with no progress to show for it. in my opinion, when you've hit that point it's time to totally reexamine the diagnosis. In the end you may wind up exactly at the same point but often there's something else lurking that adds a piece of the puzzle to help guide us.

 

[Josie]

<div class="ubbcode-block"><div class="ubbcode-header">Originally Posted By: Kjs</div><div class="ubbcode-body">
Now I am second guessing any need for medication. After reading the links about gifted children and ODD, I can honestly say he meets every single criteria. Both say no medication needed. Am I just trying to "fix" him because I can't handle it?? Is it us his parents who need the help??

So, any of you who actually read this long drawn out post, do you think he should be on medication or is it just me thinking something can fix him. he has had no testing at psychiatrist. (does see neurologist due to migranes.) I will talk to neurologist about tests next week at our scheduled meeting. </div></div>

I have a gifted child who was diagnosed with ODD also. While I think being gifted can cause problems at school and in life if not addressed, I'm skeptical that it can cause such severe problems that you would have been looking for help for him since he was 2.

I also think, along with many others here, that ODD usually is caused by some other problem. I guess it could be caused by being extremely gifted and trying to fit in to the regular world. That doesn't explain his panic attacks and his sound sensitivity, though. It does sound like more is going on than just giftedness. Whether medicine will help or not depends on what the underlying problem is.

 

[SRL]

One other thought for you is that even though you might not feel your son meets the diagnostic criteria for other disorders, it would be smart to look to them to see how they've dealt with overlapping symptoms. My son didn't have a cut and dry diagnosis so I had to borrow from about three camps to piece together a course of action for him. For example, even if he doesn't fit an Autism Spectrum Disorders (ASD) diagnosis, parents of children with that diagnosis could give excellent direction on helping a child deal with change.

 

[Kjs]

As far as his speech, he spoke in complete sentences at 15 months old. I specifically remember this age because someone pointed it out. "wow, 15 months and talking in sentences".
As far as talking like an adult, yes and no. he was / is so funny. Many of the kids his age don't get it. But, one on one, I have been told it's like 5 going on 21. vocabulary wasn't use of big words, more like knowledge of a lot and liked to talk about it. When he was still in a carseat I remember telling a neighbor we will be there in 5 minutes. He replied that is 300 seconds. comments like that.
Developmentally he did everything like he should of. Just the real traumatic experience when he was 2. Everything seems to point back to that age.
Infant - colic / ear infections (tubes at 9 months)
Ears still bothered him, heard "echoey" noise. Had tonsils removed at age 6. Took care of that problem.

 

[smallworld]

Just to clarify the testing issue, what you are looking for is a neuropsychological evaluation by a neuropsychologist (psychologist who has extra training in the congnitive and psychological functioning of the brain). Psychiatrists don't do this type of testing, but can refer to neuropsychologists they know and trust. In the large metropolitan area where we live, a good neuropsychological evaluation will run between $2200 and $2800 (may be partially covered by insurance), not the $6000 you were quoted. It's still expensive, but well worth it for attaining a differential diagnosis and for mapping a meaningful course of interventions.

 

[busywend]

kjs, I do not know anyone that paid that much for evaluations. I paid the co-pay I think it was $25 for a specialist.

Regulating difficult children moods is a good place to start. I do not like that he increased one medication and stated a new one at the same time. How will you know which one is causing a reaction? Good or bad, I would want to know which medication was doing what. So, does psychiatrist think difficult child is depressed?

I am glad you feel better about your school meeting. It is good to be informed. Trust me - they are! And it is difficult to get anything you want unless you have information.

I feel for your little guy, he seems so frustrated.

 

[totoro]

My difficult child was tested as having a very high IQ and that was with her not sitting still one minute during the entire 4+ hours of testing, the nuero-psychiatric felt it would have been higher if she could be contained!!!
So she is considered gifted... she has extreme sensitivity to noise among other sensory issues, she has tons of anxiety...lots of social issues.
My difficult child has lots of other issues different than your difficult child, (I believe) auditory hallucinations, long violent rages, thoughts of wanting to die or kill/hurt us...

Needless to say about 6 months ago when we were first at our final/final/final straw!!! We were on our 4th and then 5th pediatrician, just looking for some answers. We were luckily first sent for a Sensory Integration Disorder evaluation with an Occupational Therapist (OT), followed by a nuero-psychiatric evaluation, who happened to be really good!!! but we still came away with a lot of questions. She was at this point diagnosis'd with (severe-combo type adhd,odd,mmd,Sensory Integration Disorder (SID),rule out Early Onset Bi-Polar (EOBP), anxiety) Then we had to go to 2 different mental health therapists/psychologist and she got Pervasive Developmental Disorder (PDD)-not otherwise specified added on as well!!!

She was basically diagnosis'd with everything!!! So we had to change pediatrician's. and fight for a psychiatrist. for a more thorough evaluation.

Part of the problem is you can read all of the info on line and take the tests and read the books, but a lot of time it shows you all of the symptoms, which can be confusing, and then there is the DSM-IV criteria, techniquely my difficult child can not be called bipolar because she has not shown her true colors as far as what type of bipolar she will truly end up.. I, II, or Cyclothemic... she cycles up and down too frequently and has not set a pattern to her mania or depression. They are working on changing the guidelines.....

Then there is the symptoms that overlap... most of these disorders all have some form of Sensory Integration Disorder (SID) and ODD pattern to them... whether they really are comorbid or slightly Sensory Integration Disorder (SID)'ish ir odd'ish who knows it the same with adhd...
My daughter has a lot of autism like behaviors, if you read a lot on bipolar some of the symptoms do overlap, but maybe one day she will be diagnosis'd with true Pervasive Developmental Disorder (PDD)-not otherwise specified or high functioning Asperger's. Her psychiatrist in chicago said she just has Early Onset Bi-Polar (EOBP) and Sensory Integration Disorder (SID)... all of the other stuff are just symptoms of the BiPolar (BP)... some would agree some would not!!!
The point I guess I am trying to make is that when we first heard all of difficult child's diagnosis we were in shock and said no way!!! But it really doesn't matter, it really is best to get the best/thorough evaluation you can from the most qualified people you can, just to rule out and rule in all possibilities...
Yes it can be expensive but it is worth it in the long run if you can really feel comfortable with your child's diagnosis...and then you can start the healing process... with or without medications.

just my perspective... good luck

 

[smallworld]

difficult child's neuropsychologist evaluation involved 10 hours of testing, a 2-hour interpretive conference with husband and me, and a 33-page written report. That's a lot of hours for one professional, and that's why the cost is so high. But again, well worth it in our case because we now have a very clear picture of what we're dealing with.

 

[totoro]

Our neuro-psychiatric evaluation ended up being about 10 hours as well... with a detailed report... we thought the doctor was kind of cold in the begining but by the end we realized he was very nice and did a very detailed evaluation... he also listed psychiatrists and suggested websites, reading material...
It is something that will stand up in any school... I believe. That is what we were told.