Q is repeating a demand over and over and over and over and over and over....

[buddy]

I didn't mean philosophically trump it... it is ACTUALLY trumped in the DSM. it actually says you can not diagnose the tic disorder as Tourette's if it is accounted for by a general medical condition that causes the tics (including autism it says, by the way--if the kid has repeated impulsive motor or vocal behaviors and is autistic I guess no tourettes either...according to the dsm... but I think the quality/nature of many of the autistic repeated motor movements and sounds/words/echolalia are different--of course I haven't met all kids in the world, teehee) or if the tics are caused by medication/chemicals.

yes, I get it that diagnoses dont actually trump each other and they evolve. I am saying that the way the dsm is written now, the diagnosis just can't officially be given because his symptoms are accounted for by the general medical condition of an acquired brain injury from the cavernous angioma. The ABI is always listed under the gen. medication. axis on his diagnosis forms.

 

[InsaneCdn]

Yes, Buddy.
Just like Autism Spectrum Disorders (ASD) trumps Developmental Coordination Disorder (DCD) in the DSM.

BUT. psychiatrists here are adding that diagnosis to their "school report". Not to the official medical version... here, they tend to have a "sanitized" version of the report for school, so they can eliminate those things that school doesn't need to know. While they are at it, they add these other dxes in. Not as actual dxes, though. The wording is something like "treat as though diagnosed for XXX". In other words... diagnosis is whatever diagnosis is, but for SCHOOL planning, assume its X, Y, and M.

 

[buddy]

Well, I have never asked for a psychiatrist to write a report for the school.

so, my point has (for me/us) always been... if it helps the situation, gives additional information that makes sense (like we do say adhd but it is clearly the brain injury and probably the autism to some extent) then great. But what does Tourette's add to our situation but my having to explain one more thing. And to have to overcome all of the misconceptions about Tourette's Syndrome? I do say he has tics and it is uncontrollable.

Why the need to add so many labels if the symptoms are covered already? SO, I am not saying I dont want it, I am just asking what it will help? because believe me, if there is something it will help, I will push for it in a second!

 

[tiredmommy]

My question is: does Q have any sort of PRN medication on hand for when he begins to escalate?

 

[buddy]

yes, he has a prn dose of clonidine and it does help. I dont use it if I can see he is able to calm with behavioral redirection. They tried other things at the psychiatric hospital but they simply didn't even touch him. With the enzyme thing...some medications just dont work. And since he is at such high doses already of the ritalin and clonidine, I am allowed to give each of these one time every once in a while. Maybe some day we can find something that will work better but so far, nothing does as well as the clonidine

 

[tiredmommy]

At least you have something...

 

[buddy]

yes, and remember, this level is new to me. I fully realize we may have to adjust whole life plans if things do not get better. I talked to neuro about this and she said, with his growth, she is really sure that is the issue, we just need to get him back to a good place medically and it will be doable. when I first posted here we were coming off of the best three months of our lives. Then the growth spurt! then the poison medication....and now we are slowly getting back to baseline. Even what happened today. He never actually got aggressive, he was able to listen to me and he turned it around. I didn't give him any prn medications. He did get threatening for that second and he did antagonize me by pushing buttons (literally, pushed the button on the tv to change it so cable wouldn't come thru).

One thing...he is SOOO hungry all the time lately. I have to go grocery shopping because he has eaten all snack foods. HE has never ever been able to be hungry and with this growing, I have to pay better attention to our cupboards. YIKES how you folks with more than one teen at a time do it??? I just dont know.

 

[InsaneCdn]

One thing...he is SOOO hungry all the time lately. I have to go grocery shopping because he has eaten all snack foods. HE has never ever been able to be hungry and with this growing, I have to pay better attention to our cupboards. YIKES how you folks with more than one teen at a time do it??? I just dont know.

In our house, there's my part and the teenager's part.

1) My part is to stock stuff we can afford, with some consideration for their tastes, and to make sure we have enough calories available.

2) Their part is to be moderate on the expensive stuff, and fill up on the cheap stuff. Now... mine know the difference, yours might not.

It works like this...
B'fast is a bagel - relatively expensive. That's not enough? Hot oatmeal.
Supper - meat, veggies, fruit... are expensive. Starches, for the most part, are cheap. So, they get a reasonable quantity of the first three... and then fill up on rice/potatoes/pasta/bread.
Still hungry after the after-school-snack? Clean up some left-overs.

No, they don't get to eat 4 granola bars. Or 3 pepperoni sticks.
But... if you need 2 cups of cooked oats for breakfast, just let me know.

 

[TeDo]

difficult child 1 is going through the eating me out of house and home phase. Part of it is medications, the other part is **crossing fingers** maybe a growth spurt on the horizon and just the puberty hormone stuff. difficult child 2 has been eating me out of house and home most of his life (although you can't tell much by looking at him). I'm just not used to this with difficult child 1 and with his eating "issues", it gets even tougher. He DOES get more irritable when he's hungry. I'm lucky in that I can have an open kitchen policy for him since he never overdoes it.

 

[buddy]

oh yeah, I can't buy things like granola bars etc. without hiding them and putting out the amount he can eat in one day or they are GONE. HE loves fruit and will eat carrots too. He eats three bowls of oatmeal each morning... for 2 years it has been that way. lunch is at school but if at home, left overs or sandwiches. I always have yougart, applesauce, bananas, apples, oranges, grapes, etc. he loves all. we rarely have chips or cookies but he will eat them if I have them. He will eat waffles, bagels, eng, muffins, pbj sand. etc for snacks. even bowls of cereal. and while not wonderful, he does like those packages of buddig meats.

The thing I have to get used to is the speed....that is a huge difference for me. he eats more each setting so I have to buy more frequently. He isn't getting fat (but he had a long way to go before that) he is getting tall though and filling out nicely. I guess I will have to watch if he does ever get off the curve but so far weight and height proportionally have been the same as always. Even with this growth he is way under average for his age...I think he finally got into the 10th percentile. has usually been at or under the bottom of the curve.

I will have to check to see how much lithium can affect this, but it started before the lithium, that is why we ever started the medication game to begin with.

Even when young, if he is hungry he just can't function.... I is like people are poking him with needles until he gets food.

 

[buddy]

so do you have to have different policies for the boys TeDo? I bet that would be really hard. Or is difficult child 2 better able to follow rules about how much and when easily?

 

[InsaneCdn]

The growth curve won't last forever... our latest round was about 9 months.
Last month, he asked me to cut back on the oatmeal, a little less for lunch.
Still have to make sure the blood-sugar doesn't get low (because of medications, effect is multiplied...)

But... I've been warned that this isn't the LAST growth spurt.

 

[buddy]

good to know!!! thanks, you guys are always appreciated for sure...


still wanna know about the tourettes thing. I dont want anyone to misunderstand, I am not against it, just want to know if it is worth the effort

 

[InsaneCdn]

still wanna know about the tourettes thing. I dont want anyone to misunderstand, I am not against it, just want to know if it is worth the effort

How about if I just rephrase the original-original question? (I think its on another thread somewhere...)

To what extent is the current school administration treating Q's tics as a behavior issue?
And would they react any differently if they were told it is Tourette's?

If its a factor, and the diagnosis would affect their reaction... then go for it.

Not that that is the only reason to pursue... just the one reason that happened to come to mind in the middle of the night when I'm supposed to be sleeping!

 

[buddy]

and that was exactly the only thing I could see....would there be some who just understand tourette's better...but then I think of the kid who I had to go into his class every day to convince the teacher he was not doing this on purpose...sigh.

Now in our core team meetings, with admin there... our psychologist has explicitly said, his behaviors are just like a person with tourette's syndrome. and he has point by point explained how Q can hold a behavior off for a short time but it will come out eventually.

would be so nice if people would just get it.

 

[TeDo]

difficult child 2 is wonderful about the eating thing. He knows the rules for him are different than the ones for difficult child 1 because even he agrees that difficult child 1 needs to gain some weight. He got excited when difficult child 1 showed him that he finally has a belly (no ribs showing)!LOL

As for the Tourette's, I agree with Insane. If it will help with the SD then it's worth checking into. If it's not, don't bother.

 

[BusynMember]

Going back to the medication, Lithium starves you. My son was on it for three years and he gained so much weight...that was one reason I finally was able to question the psychiatrist and re-evaluate his diagnosis. Many psychiatric medications starve you on their own and even an adult gains weight. It is almost impossible not to crave sweets. An easy answer is to say, "He's growing so he's hungry." Well, this happens. But if it is constant hunger 24/7 and a new medication known as a weight gainer has been added in my opinion it is probably the medication causing the insatiable hunger. Depakote is worse, but Lithium is also very bad for weight gain. That's why a lot of adults won't take it.Prozac can cause weight gain too, but is more weight neutral than Lithum.

 

[buddy]

I thought I had read that. He really started eating like this before the Lithium, and the growth started before then too but there is nothing to say it isn't contributing. I am going to make sure I keep good food in the house for him since he is willing to eat apples, yougart etc. Since he is low on the curve I wont panic about it but will keep a close eye on it for sure since being hungry is such a trigger for him. If he is not getting enough benefit from the Lithium that it is worth the risk we wont use it anyway. I dont know, he hasn't been in school long enough to see if it is making a difference out of a less stress setting like home. I can make his world so much better here because I can control so many of the triggers. The test of whether the Lithium is helping will have to take place in school. Integrated Listening Systems (ILS) workers have the same experience as I do, can switch things up to de-escalate early on. I dont think they catch it early in school and I think they push triggers on him, tone of voice, reward/consequence stress that never works, the impossible to control factor of peers who laugh and reinforce the behaviors, etc. This morning was the usual, 1/2 hour of verbal trash then once medications kicked in, fine.

 

[DammitJanet]

Cory lost weight on lithium...lol.

One thing to remember though is Q is first and foremost a brain damaged child and not a mentally ill child so putting him in with kids who are behaviorally handicapped is going to be a disaster. I think that is what Dee is trying to say. There has to be a classroom for kids who have handicaps that deal with brain injuries because that it one of the identifying qualifications for Special Education. Those kids wouldnt fall under emotionally and behaviorally handicapped because they arent. other health impaired- maybe...but I am thinking it might be something else because other health impaired doesnt usually have a self contained class.

I dont think tourettes is going to help really. I just went and read a hand out on it and the medications that are most helpful are haldol and something called pimozide (sp) which I would think you would want to stay away from. they can also cause issues with metabolic disorders...sigh. Or maybe it was tourettes is associated with metabolic disorders. I dont know, I was reading fast.

 

[BusynMember]

totally agree with Janet that he doesn't belong with emotionally disturbed kids. His problems are more "other health impaired OHI." He has physical problems.