I give. Will be asking for medications, I guess.

[Shari]

Met with BT today. She was hopeful that something good would come from the (waste of my time) neuropsyche evaluation. In a nutshell, every form of additional therapy they recommended either doesn't exist (like s school run social skills group) or is identical to services he's already getting (like in-home behavior therapy).

BT, still, does not feel the ADHD diagnosis is correct, but said today, "IF it is just ADHD, maybe he'll grow out of it." I wanted to cry. That's what was said about difficult child 1, and that's what was said about their bio-dad (who is 40 and lives in his mom and dad's BARN - by the way - still waiting for him to grow out of it.)

I feel pretty much cornered. The Mental Health people want him in social skills groups and additional behavior therapy, but since its offered at the autism clinic, where the DevPed team is, they can't do much to get him into it, since DevPed says the groups aren't "suited" to difficult child.

I just do not understand why its ok for my child to be a pharmaceutical guinea pig, yet its not ok to even try additional behavior therapies...

But I guess until I get a second opinion thru the immunologist we saw, I'm down to asking for medications. And I am really, REALLY bummed about it.

Just needed to share. Thanks for listening.

 

[TerryJ2]

I just do not understand why its ok for my child to be a pharmaceutical guinea pig, yet its not ok to even try additional behavior therapies...

Welcome to American health care.
I could stand up on my soapbox and rant, but I'd be preaching to the choir. I am so sorry.
I hear you.

 

[susiestar]

I am sorry. We don't have social skills groups here either. We did drive Wizard to one that was 1 1/2 hours away and the kids were worse behaving when they left than when they arrived.

I don't get why they can't offer more behavioral therapies, or why some docs just seem to refuse to see that a child NEEDS help (the devped for example?).

Hugs,

 

[Shari]

We HAVE social skills groups 15 miles away from me. We have an AMAZING autism center. But because the DevPed doesn't think difficult child has a spectrum disorder (just the mental health team does), we can't even try these groups because they're geared for kids on the spectrum.

I'm in such a funk right now, anyway, and this just turns my stomache.

 

[susiestar]

Shari,

I think that would be incredibly frustrating. I am so sorry.

Susie

 

[KTMom91]

It's so frustrating when the system isn't even willing to give something that might help a try. I'm so sorry. Sending hugs.

 

[BusynMember]

A BT is not a very good diagnostician. Keep the neuropsychologist appointment.Or get one if you don't have an appointment. If your hub never outgrew ADHD, and never learned to deal with it, he likely didn't just have ADHD (like most disorders, ADHD doesn't stand by itself most of the time/they tend to come in clusters). It could also be more than ADHD. If his social skills are terrible, I'd want him carefully evaluated for Aspergers Syndrome or Pervasive Developmental Disorder (PDD)-not otherwise specified. If he is on the Spectrum, he won't outgrow it unless he has serious interventions, especially in life and social skills. As always, I don't know if he has that, but it's always a good idea to see a neuropsychologist (my idea of the best evaluator because they test so intensively) and find out for sure. And keep going every year until you have an answer. medications are not necessarily the answer. It really depends on what's wrong. Since there are no blood tests, it is easy to have a misdiagnosis. Our family knows THAT first hand.
Good luck!

 

[Shari]

BT and psychiatrist believe he has a spectrum disorder. DevPed says all antisocial behaviors and social problems are due to his hyperactivity, impulsivity, and inability to pay attention to anything.

I don't agree, because he is so darn anxious when he's in the DevPed's office that all they see is anxiety...they don't see what the typical difficult child behaves like, yet they base their diagnosis on what they do see...

I tend to side with them because they spend a LOT more time with him than the DevPed does; they've seen the anxiety. They've also seen the real difficult child...both the really good and bad sides of him.

 

[DammitJanet]

You dont outgrow ADHD...you can learn to compensate for it and lead a happy and fairly normal life. This does not mean that you never had it or the diagnosis was wrong.

That said...Shari...you are between a rock and a hard place because you have exhausted your resources until they bend. I feel for you. You have done what you can do.

 

[BusynMember]

Shari, I feel for you. We saw our real difficult child too and he was on the Spectrum, but he would always "do well" in front of professionals and we couldn't get the diagnosis. All I can advise is to go for a neuropsychologist evaluation. The Dev. Pediatrician wouldn't diagnose it for my kid either, although he was really such a classic case. They insisted on ADHD and then bipolar. Poor kid spent years on medications that didn't help him and that he didn't need. Fortunately, we did fight the school for Autism Spectrum Disorders (ASD) interventions by using "He has Sensory Integration Disorder (SID)" "He has poor social skills" and "he has poor fine motor" which was obvious for them to pick up. We had to call our State Dept. of Public Education, but he did get services and the help. When he finally was taken to a neuropsychologist at age 11 and had ten hours of testing and got the diagnosis., he'd already been in interentions since he was really young. Now that he's almost fifteen, it is even more obvious that he has a high functioning form of autism. He is doing SO WELL though. I really hope that you keep going with your gut, and pushing the schools. And don't give up on the evaluation. If it doesn't feel right to you, in my opinion don't accept it. We never really did accept it, but my son was still put on at least ten medications. He's been off medications for almost four years now and is extremely stable. Obviously the bipolar diagnosis. was way wrong. Also, rather than acting so hyper that he's hanging from the chandelier, my son is now really a couch potato and we have to force him to leave the house. He is the opposite of hyper, although he was very hyper as a young 'un, a common trait on the spectrum. He also is no longer so frustrated that he lashes out. Truly, he's a good kid with some quirks, but clearly a very easy teenager. I feel for ya. Keep pushing.

 

[KateM]

Shari, I'm sorry to hear this. My son was diagnosis with ADD when he was 5 by a neurologist. His school psychologist felt that he had "more than ADD" but he didn't fit the criteria for Pervasive Developmental Disorder (PDD).We believed it may have been more than ADD, too.

We paid out of pocket for social skills groups and therapy. Then he received in home therapy.

At age 14, he got his diagnosis of Aspergers. While the diagnosis did open doors for school services, it also closed some doors for us.

But the main point is that we obtained services privately when he was younger that treated him as Aspergers even though he didn't have the diagnosis yet. Because the social skills groups were group therapy, it wasn't very expensive ( and they did work on a sliding scale fee). Would paying for the groups you have in the area be an option for you?

Also, just to let you know, even though difficult child had all this therapy, he still needed medication. He was started on a stimulant in first grade and still takes a ( different) stimulant. It was (is) the single best intervention for him.

I'm sorry you feel backed into a corner. ((( Shari)))

 

[Josie]

Is there any way you can take him to another doctor or maybe an autism clinic to be evaluated? Even if you have to travel to another city or go off from your insurance plan. Then you could possibly use that doctor's diagnosis to get services in your city.

We have had good luck with doctors that don't take insurance. I have found that they will often spend a lot more time on the appointment and are open to listening to what we think. Expenses can then be submitted to the insurance plan for some reimbursement.

 

[Shari]

"He has Sensory Integration Disorder (SID)" "He has poor social skills" and "he has poor fine motor"

Exactly things we have with wee difficult child...but DevPed says its all because he's adhd.

The immunologist I took him to also felt there's more than adhd at work here and is working to get him in for a second opinion in either St Louis or Kanses City.

KateM, where did you find the therapy groups? I have looked and looked and can't find anything private-pay available.

I know medications aren't a cure-all for anything, but that's another kicker for me with the ADHD diagnosis...ADHD medications don't work. Stimulants do just that to difficult child - stimulate him - he goes from hyper to OMG. We only have a couple of medications really left available to try, everything else that is typically used to treat ADHD has failed miserably with difficult child - particularly stimulants. And the first drug they put him on at the very beginning of all this was Risperdal for aggression...not your typical ADHD medication.

 

[KateM]

Our neurologist was very helpful in giving us a list of various resources for ADD that included the social skills groups in our area. Some were run by Speech Pathologists and other soc skills groups were led by Occupational Therapists. These same groups had many Pervasive Developmental Disorder (PDD), Asperger, and ADD kids in them.

Again, not to push medications, especially since you've tried them with limited/ no success -- but my difficult child also takes Depakote (an anticonvulsant/ mood stabilizer) that really helps him with irritability and frustration. It is also supposed to help with aggression, although that was not a problem we had with difficult child.

 

[Shari]

Wee difficult child takes depakote for seizures. We don't see any impact on his behavior from it.

I'm all for medications if we can find one that will help calm him a little...but I don't think medications are going to teach him that the reason kids stop playing with him is because he's mean to them...that part he doesn't get, and I don't think medications will teach it.

 

[Marguerite]

Shari, it depends on what medications and how they affect him.

difficult child 1 was originally diagnosed as ADHD, but it never explained everything. and because his reaction to stressful situations was to shut down, we didn't realise at the time that there was a lot of anxiety there as well. In other words, sometimes he would rage and storm off, but other times he would just curl up in a ball on the floor and stay there. Anxiety driven - we know now.

WHen difficult child 3 was diagnosed as autistic (age 3-ish, we'd been asking for assessment since he was 2 and a half) difficult child 1 was diagnosed with Asperger's at the same time. Made a lot of sense.

medications - difficult child 1 had been on ritalin since age 6. It helped a lot, but never enough. He also had rebound problems (symptoms even worse for a few hours, as medications wore off). WHen difficult child 3 was diagnosed, the new doctor put them both on dexampthetamine which helped a lot. Once dosage was established they were switched to a privately compounded sustained-release dex.

OK, they're Pervasive Developmental Disorder (PDD) - so why ADHD medications so successful?
I don't know. But they are.

Anxiety still a problem - antidepressants. But difficult child 3 couldn't take them. He was either allergic (rash) or had a weird reaction (insomnia, leading to worsening behaviour after three days of no sleep).

difficult child 1, however, has calmed down a great deal on antidepressants. If he misses taking them or tries to cut them back too far, his Obsessive Compulsive Disorder (OCD) becomes a big problem and he paces the house, checking doors & windows etc.

medications and interacting with other kids - on the dex, both boys were able to focus well enough to interact with other kids more gently and more stably. Less wild behaviour, less raging, more ability to think before reacting.
HOWEVER - there is still a big social gulf between difficult child 3 and his peers. Even really decent kids in his class finally shrugged their shoulders and stopped trying to involve difficult child 3 in their games. He just didn't 'get it'.

Now - difficult child 3 can interact well with adults, and with much younger kids. His best friends are all much younger, about 9 years old to his 14. But they are good friends, they seek him out. Generally they tend to be the brighter 9 year olds, too.

If medications work for your son, they MAY help him stay focussed long enough to learn the social skills he needs to interact more appropriately. But if he's on the spectrum, he may still have other social problems to overcome and could need to find friends elsewhere.

However, friends are friends, wherever you find them. One good friend is better than no friends.

I agree with you that anxiety can be a huge problem and make it hard to see exactly what the problem is; but it does also fit with both ADHD and Pervasive Developmental Disorder (PDD). It's not unusual to have both. Some people believe ADHD is part of the Pervasive Developmental Disorder (PDD) spectrum. I'm keeping an open mind about it.

I hated the thought of having to medicate my tiny son at only three years old. But with hindsight, I am so glad we did. The difference in him was almost magical.

His dose has just been increased. He now takes more than his adult brother. We have been given license to increase the dose even further. We will do so if we feel he will benefit.

I hope you will be able to accept the medications and find them helpful. If you have friends/family likely to be critical, don't tell them, until YOU are comfortable with it.

Marg

 

[OpenWindow]

It's so frustrating! When we lived in St. Louis, we took difficult child to an autism clinic and they said he could be Pervasive Developmental Disorder (PDD), but they couldn't be sure enough to qualify him for the program. We did find a social skills/group therapy provider we paid out of pocket - I think they charged on a sliding scale depending on income. Although they didn't specialize in the spectrum, it did help difficult child a lot.

Deciding to medicate was one of the hardest things we've ever had to do. I was very anti-medication. The only way I could agree to it was to look at it as a trial. It was easy to look at it like this with a stimulant, because you can tell the first day whether it's going to work or not. And since it leaves their system quickly, you can tell the difference between when they are medicated or not. Our difficult child is still on a stimulant, and I can tell from the days we forget to give him his medicine, that it is working and it is worth the risk. He would never have survived school this far without it.

You're right that the medications may not teach him that kids don't play with him because he's mean to them (a BIG reason difficult child still has no real friends is because he doesn't understand that), but it does slow him down enough for him to not be as impulsive. He's a lot less obnoxious and the neighborhood kids are able to put up with him a lot more easily. While kids don't seek him out to play with him, they don't try to get away from him like they used to. That's been our experience.


Linda

 

[Shari]

As usual, I don't think I'm explaining myself very well. I'm not against medications to calm difficult child. I wish we could find one that worked. We've tried several, all with very unacceptable results.

That said, what I am against is medications as the first and only "line of defense" for difficult child. His doctor is willing to throw blood pressure medications and anti-psychotics, stimulants and depressants at him, without the corresponding diagnosis'es that those medications are indicated for, but haites will freeze over before she will allow him to attend social skills group without having an autism diagnosis (which he has (or at least had, not sure of current status), but wasn't given by her).

THAT's what I can't quite comprehend.

And Marge, wee difficult child is much like your difficult child 1 - if he feels stress of any sort, he shuts down, also - and it presents in such a way that he either hides in a small space or comes at you with guns blazin'. It took quite a while to figure that out, but that's one thing I'm sure of with difficult child, anxiety is a big part of his issue.

 

[witzend]

Shari, was it you that was going to look into gluten sensitivities with an allergist? I hate that they told you he might just grow out of it! It's terrible to be told that when you have tried everything available to no avail, and have been turned away from anything hopeful.

 

[Christy]

How frustrating that a child with behavior problems would not benefit from social skills therapy? It's a shame that you have to try a get a specific label to qualify for services that are obviously needed.