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Worst case he's seen in 30 yrs?


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Ok, so I knew my kid should have been tested last year with all the problems he was having in school. But I explained it away..."He's only 5, and a boy. He'll calm down. He just needs to get use to school." Well, this year has started off as a disaster. He's already been to the office three times in two weeks. Missed recess, had punishwork.

So I finally made the appt. The doctor said my child was obviously ADHD and the "worst case I've seen in 30 yrs of practice" My heart broke.

He's extremely concerned about the boy's lack of social skills, and how he's oblivious to conversations that go on around him. We go back for more testing Thursday. He wants to test for dyslexia, autism, other learning disabilities. Wants him medicated as soon as possible for the hyperactivity.

I'm worried...Will he ever "get it" socially? The kids his age play with him now...but what about later when it's not all about playfighting?

Do ADHD kids do better socially once they are medicated? Is that the norm? Any advice will be appreciated. I'm a little overwhelmed by all this.

Thanks

Croix

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It's not been on the books for 30 years I'm pretty sure. At least the current understand of ADHD is so different from what it was 30 years ago that's practically a different thing. What kind of doc is this? Can you find someone younger who did their residency in the past ten years or even go to a clinic accociated with a med school? There's a lot of fairly new info about ADHD that isn't exactly mainstream yet.

Yes, meds help a lot and the younger kid are medicated the better the chances in the future.

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Yeah, they didn't call it ADHD when we were kids. My mom mentioned that my brother use to be on ritalin when he was a kid. That would have been nice to know earlier.

I took him to a child psychologist. He's arranged for a "specialist" to do the other tests. He didn't mention what kind. I was too taken aback to ask all the questions I had.

This doc was the only one in my area insurance covered. Now, his pediatrician could have diagnosed him and put him on a stimulant, but I knew his problems were more than just the hyperactivity. Baton Rouge isn't exactly a great place to find mental health help for kids though.

Thanks for the reply Velvis. I'm sure I'll be calmer once I get through Thursday and know what we're dealing with. The unknown sucks.

Croix

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You're kidding? Wow! Yeah, I like the new name better too.

I just found out that Sept is ADD Awareness Month. heh

Tomorrow's the big day. The boy should be medicated by next week. My dad has me all freaked out about it. "You need to watch that boy like a hawk the first few weeks on meds. Go check on him every few hours at night to make sure he's still breathing" WHAT??? Is he kidding me? Like I need something else to worry about.

Croix

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You're kidding? Wow! Yeah, I like the new name better too.

The term I recall is "minimal brain damage" - harder on the parents and the teachers, sometimes

more humorous for a teen (re: the usual comments about "dain bramage")

Tomorrow's the big day. The boy should be medicated by next week. My dad has me all freaked out about it. "You need to watch that boy like a hawk the first few weeks on meds. Go check on him every few hours at night to make sure he's still breathing" WHAT??? Is he kidding me? Like I need something else to worry about.

There's been all sorts of panic stirred up in the press over the increased risk of cardiac problems

when stimulants are given to kids with undiagnosed cardiac disease. There's a topic or two on it in the

stimulants board.

Since ADHD has been linked (co-occurs more often than usual, but no good explanations or demonstrated

causes) to things like sleep disorders, higher frequency of allergies, rhinitis, hay fever, etc. AND

stimulating meds are sometimes given to help with central sleep apnea (specifically Vivactil - an "activating"

TCA,) and also amphetamine is an old-line decongestant, it's possible the boy will sleep better if the

dose isn't so high he can't sleep at all.

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Null, as a matter of fact he does have sleep problems and allergies. I figured they were just because everyone in my family has sleep issues and allergies. We are in La after all. I know nothing about stimulants. Time to read up so I can go in there somewhat informed.

Latin, I have no idea if he'll be able to stay in his regular class yet. I talked to the principal Friday and she was so wonderful. They have awesome programs at his school. If it turns out he only has ADHD and no other LDs, he'll stay in class most of the day, and just get pulled out for some one on one attention in the areas he's struggling in (like handwriting).

I'll know more later.

Thanks guys

Croix

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Do you have to let the school know his Diagnoses?

You do have to tell them he is taking medication for emergency purposes.

Will he stay in his regular class?

I hope every thing goes well for you.

You don't have to tell them diddly unless he has to take medication during school hours.

If accommodations are required you have to tell them. Accommodations and the whole special ed / IEP process are just as important, so it's best to tell them.

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Maybe, if he's already ALMOST coping, he could improve enough to stay with the regular class?

I can tell you from personal experience, although I don't have the hyper part, that stimulants can improve the social thing quite a bit. I'll have to admit that the experience of someone in his 40's may not apply, although I bet he has some of the same problems.

You might want to ramp up the dose pretty slow. My general impression is that pdocs may tend to go a bit high sometimes. Taking a stimulant can be pretty disconcerting at first, and you certainly want your kid to cooperate if this is going to help in the long run. I think if it was my kid and he was starting on Adderall, I'd want it to be no more than 2.5mg at a time at first. I think Ritalin is similar dosagewise. I found either one, on the first day, to cause tense muscles, fast pulse, etc. Ritalin may be better for impulse control, but it may not be too fun, either. Or, at least, I feel that way about Focalin, which is similar. Maybe I was just taking a bit too much. Be prepared for a hard crash when the Ritalin wears off, and be prepared in case the longer acting forms don't last as long as they're supposed to. When I say crash, I mean tiredness, irritability, and a return of symptoms. Also, be prepared for your kid to be pretty hungry when the stuff wears off, but not so hungry while it's working.

I find very small doses of Adderall help me get to sleep, to stay asleep if I start to wake up, and also act as a decongestant.

Don't be surprised if your kid even gets sleepy when he's had a substantial dose. Happens to me sometimes, though usually I can choose to stay awake and alert. I had a good nap in the middle of the day today, while on Adderall.

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i can't give you the experience of taking a stim, because i never have, but i can talk briefly about strattera, and of course, about how it feels to have ADD Inattentive (not quite what your son has, but in the same general family) untreated.

Strattera, a non-stim treatment, is used when they don't want to get stims involved for some reason. It doesn't work in my opinion, at least for me it didn't do anything. it felt like i was taking more wellbutrin (i've heard they are related, which would make sense that i felt that way). all in all, it wasn't a potent treatment for me. some ADD sufferers swear by it, but for the most part, we tend to dislike it.

Living with untreated ADD (Inattentive) is like a constant "what did you say?" world. it is impossible to hear things, read things, or understand things the first time, for the most part. things need to be repeated, written down, and notes need to be made. we need to follow reminders in our daily lives. alarms are good tools, along with post-its and other useful devices. some get really creative! then there are those like me who try to live their lives without taking charge, and it results in bank over-drafts and missed bills, credit going to hell (worse than already being bipolar), and other evils. it isn't fun to cope with.

this is speaking as an adult of course.

as a child, it was difficult because i never understood anyone and had to ask them what they said, and they teased me for being slow or stupid. i took notes in class and had the teacher go over stuff with me after class, and she thought i was slow too, even though i was getting good grades. i was a good reader, but had to read and reread things so often that it took me twice as long as a normal student to read the same thing. tests took me forever. i always tried to get accomidations for tests, and usually my teachers, while not having a DX in hand, were pretty sure about what was going on and gave me the extra time. all teh while the kids tormented me.

i also never knew what to say to people, because i didn't understand what they said the first time, adn what was i going to do, ask them to say it over again? it hurt my social life a lot. now things are a bit better, i've learned how to cope and manage over the years. but sometimes people catch me off guard and i can't be ashamed to ask them to say it again.

people at work sometimes think i'm slow, until it suddenly comes together for me and suddenly makes sense, and hten i'm the wiz at it all at once. it is just my learning style. if i could understand what they were talking about then maybe i could put it together the first time. as it is, i need to draw myself diagrams and sketches just to see how A works with B and C and so on. in technology, there is a lot of that, and i end up looking like i have no clue with all these diagrams drawn everywhere.

i wish there was something they could do for me in my cocktail stim wise to help me keep my attention and be able to focus on what i am hearing and reading, but there isn't. my attention is here and gone. i'm very careful when i write, or i suffer the same symptoms. i just control it very well. soemtimes i ramble- i'm sorry!

that's a part of what he'll be dealing with as a child adn an adult if left untreated or undertreated. don't let them go for that strattera nonsense unless they really have a nice reason for it. like for me, they couldn't give me a stim, so it was our only hope. it didn't work, so i'm without hope. i have to live with it, and is one of the reasons i have SSD.

chin up! with the right meds and interventions, he'll be able to lead a normal life and channel his extra energy into creative pursuits and activities. i hope the best for him.

long winded Loon

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yeah, I'm not sure that's the best doctor. I mean, that's an excellent way to freak out a parent if he says that in the first meeting, and I don't think you as a parent need to be any more freaked out than you are already.

um, I don't have ADHD/ADD, but my little brother does, and I try to be somewhat involved with him. he has a lot of other problems, including asperger's, hearing loss, and suspected minor cerebral palsy, although we're not sure about that one. so he's been through a _lot_ of the meds, including stims and mood stabilizers. I'm not sure what he's on now, but I know that one thing is concerta, and I know that helps a lot with keeping him in control of himself. I think it's probably been four or five years since he was diagnosed, and he's been through so many meds, it's pretty sad actually, he's only eleven. but, you know, they are crazy meds and that happens. I don't want to freak you out, either.

the only thing that I give a warning about is that you mentioned possible learning disabilities? I know Loon-a-tik said some good things about getting help in her school, but with my brother it's just been shit. he just started middle school and I guess that's going decently, although the teachers aren't responding and we can't always rely on what he says. you really have to push the school sometimes, including sending them nasty emails and showing up at the school randomly and demanding to talk to someone.

all schools and all kids/adults with ADHD/ADD are different, though, keep that in mind. I'd like to be more useful since I know my mom at least has all this information, but... eh. I would suggest getting on some email lists, I know my mom has had luck with that. so, best of luck. <3

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Thanks for all the info guys. And I really appreciate all the support. Publicly and privately. I couldn't get him an appt til Thursday for the meds, so I'll be starting him on them this weekend. I'll keep ya'll updated.

The doctor's statement didn't freak me out. I live with the boy. I know how hyper and out of control he is. I was just so surprised that a doctor would tell a mother that!

Really I don't know how I've lasted this long. I'm exhausted. And maybe soon our household will calm down and I'll get some rest. It would be nice not to have to take 2 hours to myself at night just to decompress from the day.

I'm also looking forward to better school days. His teacher KNOWS he's adhd and we're working on it, (we converse at least every other day) but she still sends him home punishwork at least three days a week for excess talking, not following directions, etc.... Like we need an hour of punishwork on top of the homework it takes him forever to do. Dumbass. The principal has been great, but the teacher (who is nice and talks the talk, but doesn't walk the walk) needs to get a clue. The punishwork doesn't bother him one bit. Plus that's way too much homework to put on a 6 yr old little boy.

Sorry for ranting... I'm just pissed at his teacher. I scheduled a conference with her and the principal but they couldn't fit me in until the 25th.

Wish me luck

Croix

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The doctor's statement didn't freak me out. I live with the boy. I know how hyper and out of control he is. I was just so surprised that a doctor would tell a mother that!

Usually it's the "boys will be boys" line, delivered as the subject finishes gnawing through the soft restraints

and proceeds to swing from the light fixtures.

Like we need an hour of punishwork on top of the homework it takes him forever to do. Dumbass. The principal has been great, but the teacher (who is nice and talks the talk, but doesn't walk the walk) needs to get a clue. The punishwork doesn't bother him one bit.

What, and miss out on an extra hour of undiluted mother-son interaction? 'cause if it's educational, Mommy

has to answer ANy question! And why does "bunny" start with "b" when "d" looks more like a bunny rabbit?

"'CAT'. 'c'. 'a'. Mommy why can't we have another cat? I'll take good care of it this time! Really! um. That's

a 't'? This stuff is boring. Can I go watch TV?"

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Wifezilla, you are my new hero. 17 yrs? Just the thought of this going on for that long makes me want to go take a nap.

Null, exactly! He did a one-on-one oral test yesterday. The note I got attached read:

"He started to write the answer for #6 on line 10 (not paying attention). I stopped him. On #12,13, started to shoot his pencil like it is a gun - I stopped him & told him to focus. On 17,18 he started rocking back and forth in his chair - I stopped him and told him to focus"

Then today..... I pulled out his papers and found ANOTHER detention slip!!! His infractions... "He started as soon as we got in class (8:20). He yelled out Can I get a drink of water? I told him no, he is to get water before the bell rings during 7:45-8:10. He then says Why not? That was disrespectful."

BULLSHIT, that was not disrespectful. The boy has no concept of time. He doesn't know when 8:00am is! All he knows is that he is allowed to play before the first bell. So he was thirsty by the time the bell rang and he had to go to class.

2nd infraction... "Not following directions. He was told to stop playing w/ the water fountain knob. He continued to play w/ the knob."

I asked him about it. He said "Mommy, the knob wouldn't work! I was thirsty and couldn't get any water to keep coming out so I could drink"

So, I wrote back a note (After I sat down and cried) I told his teachers that I am not making him do punishwork for trying to get water.

That conference can't come fast enough. I'm so sick of them being such hardasses to a poor kid that doesn't have an ounce of defiance in him. He's just unfocused and hyper and has a hard time grasping concepts and remembering things.

Am I doing the right thing? I don't know. I just feel terrible for my kid.

Croix

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Hey Girl!

Long time. My first reaction is your pdoc for little guy is an asshole even saying something stupid like that. So if little guy is the worst case in 30 years, how many cases? 2? So FUCK THAT.

I would number one, get a second opinion, and 2 try, try, try, not to wig out.

As far as schools go, depending on your school district with the "No Child Left Behind" Act, there is a lot of things they CAN do for little guy in the way of accomodations. And, of course, he will be labeled (Ive been down this road too) and have and IEP (Individual Education Plan). That will be a part of his permanent record throughout his elementary and secondary years. His high school records will never be released without his permission, so unless he plans to go to an Ivy League College or any such post-secondary school that asks for ALL his records and not his transcripts, it's no big deal.

My advice of a mom with a kid with an IEP since 2nd grade, who is now done with HS, finally, is READ EVERY FUCKING WORD they write no matter how cumbersome that may be. Don't sign shit that you don't agree with, and attend every meeting because they will have them without you, once he's "in the system."

At least that's how they do bidness here is PA, which gets a lot more money per crapita for education than where ya'll hail from. So, there are a couple really good web sites I have bookmarked for education law. You should also, if they're not online, get a copy of your school district's policies and procedures and get familiar with them NOW. I fucked up and waited to long and Big E suffered for it.

But most of all, because I know we roll the same way, please try not to freak out about this. By the time little guy is in High School hopefully they'll have better drugs, better educated educators...better everything to help these kids.

Love you,

S9

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Null, exactly! He did a one-on-one oral test yesterday. The note I got attached read:

"He started to write the answer for #6 on line 10 (not paying attention). I stopped him. On #12,13, started to shoot his pencil like it is a gun - I stopped him & told him to focus. On 17,18 he started rocking back and forth in his chair - I stopped him and told him to focus"

At the last point the teacher blew it. The kid is going to move and fidget when he's trying to think ... stopping him, grabbing

his attention into social interaction ... even if he had the answers they were *gone* in that second.

Then today..... I pulled out his papers and found ANOTHER detention slip!!! His infractions... "He started as soon as we got in class (8:20). He yelled out Can I get a drink of water? I told him no, he is to get water before the bell rings during 7:45-8:10. He then says Why not? That was disrespectful."

For a thirsty 6-y.o., that wasn't very disrespectful.

That conference can't come fast enough. I'm so sick of them being such hardasses to a poor kid that doesn't have an ounce of defiance in him. He's just unfocused and hyper and has a hard time grasping concepts and remembering things.

Am I doing the right thing? I don't know. I just feel terrible for my kid.

The hard time is in remembering unrelated details and grasping concepts that are laid out for rote learners - one thing

he'll never be good at outside of his areas of intense interest. Grasping concepts that fit together, that can be

visualized, that work together - that may not be as hard for him once he can build the appropriate models in his

head for them.

I have to think that you ARE doing the right thing. The school system has already identified your son as not being from the

standard cookie-cutter mold they want to work with, and I get the impression that they are in the habit of riding such kids

hard until they give up or self-destruct. Now they just have to learn that beneath the "misfit" label should be "Warning:

Has a mother who won't put up with your standard bullshit" (i.e, what saturnine said)

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Thanks S9. See those were things I did not know yet. I have no idea how to navigate school for him. I'm definitely going to get a copy of the parish's school policy.

They KNOW he's a special needs student, they just refuse to cut him any slack or get started in IEP until they get the report from the doctor. I called this afternoon and they said they'll have a basic preliminary report written up for me by Thursday, just so I can get him on meds. That's not even the full report and recommendations based on his testing last week.

Null, thank you so much for your insight. I'm sure once he's in IEP he'll be much better in school (Although he aced all his tests this week) I'm just not sure how to help him study at home. I don't know the tricks or the different ways of trying to relate information to him so he'll better grasp it and retain it.

You got me thinking when you mentioned his areas of intense interest...He's extremely interested in whatever Marine really cares about. Always has. When Marine started playing golf, the boy became obsessed with it. Now, it's UFC for both of them. I'm wondering if getting dad to get him interested in other things will help...hmmmmm....

Croix

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I don't know if you can get school people to do this, but some things to keep in mind:

-Punishwork isn't going to be motivating. It's too far away, doesn't seem real. A small, immediate payoff of some sort for paying attention would be much better. Doesn't have to be big, could be just a tiny bit of recognition or something. The famous Dr. Hallowell, who has ADD himself (was it really him at the wheel of the black Mercedes laying a patch after the speech?), said that the only way he learned to read is that the teacher came and put her hand on his shoulder when it was his turn to read in class. Of course, if it's something he's interested in the problem will be getting him to leave the room at the end of class. If they insist on negative reinforcement, it's better if small and immediate. This kind of immediate reinforcement may help at home, too. Just make sure it's something he really does like, and that it doesn't have some kind of built in condescension, or, perhaps, gratuitous cutesiness, unless you're sure he still likes cute. I think there's a lot of pressure on boys not to.

I know when I was a kid I was really into the feel and smell of books, paper, etc, and also the visual style of the materials. Maybe there's some kind of paper or notebook that he'd prefer. For me, it was pale green and narrow ruled, I think. Now more like graph paper. Maybe take him to a stationer's and let him pick some things. He might have a particular kind of pen or pencil he likes. Indulge this. Also, be prepared to listen to a lot of page flipping. Some books have an irresistable sound that way. Maybe ask him where in the house he'd like to work.

Some people may do better when it's quiet, others when they have a noisy environment they need to actively shut out.

-One key to interest is to make sure they don't take the easy way out, think of him as a dumb kid, and refuse to challenge him. I can tell you that for a smart kid with a touch of ADD, public school can be a joke. Always seemed to me that they were trying to beat our curiousity out of us and make interesting stuff seem dreary. Of course, another possibility is that a normal class would be too easy except that he may not be "there" more than a quarter of the time. Even then it may be too easy. Unfortunately, that sort of thing trains you to waste your life, because it really could be possible to go much faster.

-I think most kids can handle a fair amount of condescension without too much resistance, but I'll bet your kid can't handle quite as much.

-It's important to catch him doing things right. He's got to know the things he can really do well, in no uncertain terms. You don't want him to get a general sense that he can't quite get things right. That's a very hard feeling to throw off, though in my case it also comes from a puritanical New England Gothic family where it's a weakness to admit anything's ok. Anyway, whatever these things are, academic or not, make sure there is room for them in his life.

-More time for tests isn't necessarily a good thing. If he has all day, he may take it. And be desperately bored, getting what answers he can only in the last few minutes. I suppose for some kids it helps.

-Does he get sleepy in class? I know I did. Too bad teachers aren't allowed to playfully toss nerf balls or something.

-Make sure he can get physical activity. If he's not getting a recess or two every day, he may go a little nuts. Schools are cutting back on them, which I think is counterproductive. He doesn't have to play sports or anything, but he probably needs to move around on a regular basis.

-He probably wasn't even aware he was rocking in his chair, and in fact he may have been paying attention better because of it. The teacher shouldn't chew him out for stuff like that unless it's disruptive. When I was a kid I apparently drove my parents nuts by tapping my feet, but I just couldn't stop for more than five minutes at those times when I was prone to do it. Stopping was kind of like holding my breath. When he gets something that really challenges him and holds his attention, he may still get so excited that he has to move. I used to get this way even in college, maybe two hours into problem set I'd be sweating and barely able to sit down and would have to go move around to break the tension. My s.o., who helps students who are having trouble with English, also gets a lot of kids with Ld's and such and described to me a kid who wanted to be good but HAD to move. He'd keep one hand on his desk and walk around it. This kind of stuff DOES get less with time, and with meds. I don't have to tip back in a rolling chair anymore (which can be pretty exciting if you don't judge it right), but I do notice that at times I'm rocking a bit while writing this.

-Might help if he has food with low glycemic index for no sugar crash. Minor effect most of the time, I think, but a sugar crash is giong to make things worse.

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