Has anyone ever witnessed *true* sever, ADD?

[Wende]

i am looking for honest, personal experiences here. If you're sane, then you have not had true, severe ADD in your family. It's nothing to joke about. IT's disgusting. It's frustrating and it's family taring.

I have been fighting with this my sons whole life. It's to the point he walks around the house pacing, not knowing what he is supposed to be doing. He has been on medicine and it is magical. BUT, in my heart, I couldn't give it to him anymore. Yet, I always end up here, lost. Wanting ANYTHING to make this stop.

He is slipping through the cracks at school. This will be his 2nd grade in a row of failing. I have weekly contact with his teachers, which obviously isn't doinog anything. They keep saying, he needs to be responsible for himself and that's it. NEXT!
I don't know where to go, or how to get there. I have an appointment on Monday to talk with his MD, BLECH, about counseling. The kid, is so freaking smart, but too dumb to jump through freaking hoops. I don't have it in me to homeschool.

I'm sorry if this thread is confusing.

[Wende]

The title was suppose to read, Severe

[Wende]

Yet, homeschooling is going to be the only thing that saves him.

[Creekie]

:heart: I'm sorry love. I have no idea how to help you, or what to say. :heart: I just send my love.:heart:

[Wende]

Sometimes Creekie, thats all you can do, and sometimes Creekie, thats all I really need. :( Ty :)

[In A Silent Way]

I have a family member with Tourette's Syndrome. It's double-whammy: ADHD + OCD. :eek:

[fire_rocket]

:heart: Love is all I've got for you too, Wende. :heart: I hope you find the answer soon.

[Wende]

He needs to be constantly prodded. Contant prompting. It's so tiring. It takes away from my other two children, who are angels and doing everythign they are supposed to be doing. I'm sad. It hurts. It sucks. What is the long term effects with children and Ritalin? I mean, It's been around soo long, longer than you think. JFK was on Ritalin. He's just not himself on it. Happy fun Brandon, but then again, he's not being productive. Almost, and I say this with a grain of salt, he's a waste of space. I feel 100 % responsible. Grrrr.

[Wende]

I"m totally rambling.

[In A Silent Way]

:heart:

[Misha]

Wende, how hard this must be for you. My nephew has been battling ADHD for years now (complicated by the fact that his Father-my brother in law-is bi-polar). My sister has been through hell. He's on adderall and is really doing well. I understand how tyou feel about not wanting to drug him. My sister agonized over it but in the end, it was the most "humane" thing to do (my nephew is EXTREMELY sensitive to noise and would practically go balistic at any little sound that was even a little loud). WHen he first started the adderall, he seemed so different. But now he seems to have leveled off and is at his best.

I am definately not advocating you do something you don't beleve in--I really have no idea what I would do if I was in your situation. I just wanted to tell you about my sisters experience.

Much love to you Wende:heart:

[Raynequeen]

i never had a severe case, but i did have it affect my ability to be 'present' in school in that - every day was a struggle. happily i had one math teacher who helped me out.... with tricks to get through. it wasn't that i wasn't listening, i was, i just needed to focus on something specific with my nervous ticks to not interrupt the class #1 but #2 not drive myself crazy. it's torture to be stuck somewhere when your brain is moving so fast, it's torture.

some things that helped me - when i was real young in middle school was i liked to doodle - so my math teacher got me a blank artist book that i could doodle/draw on and i felt both prompted for my 'art', as well as, cooler that i had this cool art book and though other teachers didnt like it that had me, they eventually learned i NEEDED something other then sitting their listening. Sometimes if i got too carried away in my 'relief' methods i wouldn't hear the homework, etc, but it didnt take long for the teachers to start reminding me last..... when i left the room "hey jack..... page 32. write it down ...." whatever.

another thing that helped me was jolly ranchers. i know silly. but - it took me 8 per class period. I'd keep them in my pocket and sucked one back to back and it was something to focus on that felt really positive, when i was down to about 4 i felt calmer, 2 VERY focused knowing i could leave soon. by 1 i was free, and it felt happy for me. sure i'd have to refill my pocket, but it was 1 pocket full closer to the end.

my grandparents tried ritalin .... but like you said, i disappeared. and they stopped. the only thing i must say is that the same things that worked for my behavior at school DID not help at home. hahaha. they had their own set of issues. haha

other things that helped... a cool watch - at least I was and still am an obsessive clock watcher. i also did crossword puzzles. they kept my attention sometimes MORE than the class, but ~ i think back now that it would have been awesome had the teachers/grandparents made me some related to the class i was in . . .science questions... etc. if you google make your own crosswords you can do them - i make them all the time now for gifts :) also, incentives.... if i did my homework for one week, and didnt get in trouble for disrupting, or if i didnt have a mini-meltdown - i got to go out to eat on weekend ..... or i got something i wanted. i bet it's hard when you have 2 kids doing 'their part' but still, he needs something special because enduring just 1 week of school can seen menial to one, but so frustrating to another. if he wanders the house unknowing of what to do, and that's hard for him, being in a hard chair in a closed room with people he doesn't 'know' is so much more difficult. maybe a sport to help? even just take him bowling one night a week as an incentive if he likes it..... whatever he's in to.

i dont know wende. i am sorry for you but very sorry for your son... these days are the hardest. however, he has to find something to focus with.... soon, because life is hard without them. i work every day 8 hours - and i need tricks to get me through # of cups of coffee, my watch . . . . . we all do. sometimes the adhd/add is severe, but sometimes it's coping with life that is hardest..... and combined it's so hard. i send him love. but with you and his family and positive reinforcement.... he will do fine. you will do fine.

and even though the ritalin/dr-g route isn't your first option, if he can't do it without - maybe he can't.... you will know best.

i love you all.

end of my ramble. hope it made sense. ha. i love you wende

[Raynequeen]

wow. i just wrote a lot. hahaha

[Wende]

I don't know how I did it all these years, oh yea, thats right...pure luck. I have a 7th grade education. I never had that *special* math teacher. Nor did my parents have a CLUE what was going on. I DO have a clue, i've been there, I know what's going on in his head. It's not healthy, it's pure hell.

I have no problems with him at home. I can handle him.

But he's not making it through in school. I am going to try couple of those things you just mentioned Jaqs. Jolly ranchers and doodle pads. Yes, that may just work.


P.S. I love adderall. :lol:

[Erinisme]

have you tried giving him caffine in the morning?

How bout trying to change his diet, I find that many ADD symptons can be controled with diet. Try taking away meet for a month, see if there's a change, Then wheat...my neice had terrible behavior issues from age 18 month-4, when we took meat away, behavior changed 180. I know other children whom have also found release through diet.

Good luck :heart:

[Wende]

I firmly believe it all stems from our diets. 100%

Sugar, wheat... i've never heard the meat one before.

I just had a conversation with him, his legs clicking eachother, wobbling back and forth...I sat him down and gave him a doodle pad and we got through the conversation like normal people. He was attentative to what I was saying and no movement in any other form. Amazing.

[Raynequeen]

another cool trick is a word game - on top of page write a big word like OBSERVATION and then try to find as many words out of it you can. i used to do that every day - and i even did this in college during lectures. eventually i stopped needing someone else to give me the word, and i would listen to the teacher/professor intently waiting for a 'good' word to use to think about which word would make the most .....

[Mama Kel]

Talk to an OT (mamapj) or a PT. There are lots of therapies that can be done that helps reduce some of the symptoms - weighted vests and/or lap pads, sitting on a large exercise ball instead of a chair, have a fidget in his desk to take off the edge.

If he's diagnosed, I imagine he has an IEP? These things can be written into the IEP.

[Wende]

His IEP has been discontinued as of last friday. The teachers don't believe he needs it. :lol: I hate the school district we live in. We are actually talking about moving. Makes me sad, but our childrens education comes first right?

[KindGeeGirl]

:heart: :heart: :heart:

[In A Silent Way]

His IEP has been discontinued as of last friday. The teachers don't believe he needs it. I hate the school district we live in. We are actually talking about moving. Makes me sad, but our childrens education comes first right?
He should still be under Section 504 of the ADA. You can demand a 504 plan for reasonable accommodations if his diagnosis affects his academic work.

[seany]

Wende,

Sorry you're going through this :( I have one friend who has went through a similar situation with her son. It used to be horrible and she went through all the on/off meds scenarios, special schooling, constant contact with the school, the constant worries and trying to get him to find direction for even the simplest tasks / daily life stuff at home, .... It was exhausting for her as a single mom. I can say, however, that things did seem to get a little better as he got older. Still failed and wa kept back, but at least seemed to deal with it better.

I want to add, that if anyone can do this, you can. You're a strong and positive woman and I've always admired that in you. Hang in there!

:heart:

[Wende]

Wow, thank you. THank you.

I love you guys all so very much.

~Sigh

[sarah b.]

Hey. Not a terrible case, here, but it's one of those "bonus" things that comes with my TLE. Re: Ritalin -- it makes you a little shorter than you would've been if you weren't on it. Not much. It stopped working for me, eventually, but I was on it in addition to anti-seizure meds, so different context.

Meds that have worked for me: Straterra -- FREAKIN' GODSEND. It's not a speed. It's an ... I don't remember, but it's not speed. And it works! I take it at night and then I can wake up in the morning. Lost my last job before I realized I needed to raise the dose (after a couple of years on it), but once the dose was raised, I was fine again (too little, too late, no health ins, so I don't have it, anymore, but when I get a job, I'll find a quick loan and get my ass back on it).

The latest ADD med these days is called Vyvanse. It is a speedy-type, but different than Ritalin, dexedrine or adderall, 'cause it has a VERY STEADY ACTION. (which I don't like, 'cause to get me out of bed, I not only need the Straterra at night, I need that pop. but everyone's different.) It is the sort of ADD med that I think would work well for kids (and their teachers/parents). I was on it for a month when it first came out and was free in trials. Please keep in mind half the point of me taking this stuff is to counteract the zombie side-effects of anti-seizure medication, so when I talk about stuff worked on me, it's not from a solely ADD perspective)

As far as He has been on medicine and it is magical. BUT, in my heart, I couldn't give it to him anymore. is concerned, I am taking a step back because I am not a parent. However, if it was his eyesight or his hearing, and taking a medication would help him, would you do it? If your answer is yes, then I don't understand your statement.

Imo, meds (and alternative medicines, and coping skills/therapies) are like glasses for the brain. Eyes can't see? Get glasses. Brain got neurons acting like morons? Give 'em glasses (treatment, whatever kind you choose).

As far as alternative meds go, if you do a web search for Pycogenol, you can read about its use for ADD.

And what Erin said re: caffeine -- yeah, caffeine helps the brain focus. I sip from a 20 oz. Mountain Dew all day, and it really does help keep me on task. (and I brush and floss my teeth often, 'cause, yeah, sugar on teeth all day's not so good, but focus is.)

My (Chinese medicine) mentor has a child patient with ADD, and is treating him with at least some success. Not sure if he's using acupuncture and herbs, or just acupuncture.

As far as coping skills go, drawing totally helps me. In school, when I had pages with more than one column of text to read, I would cut a window about 4" high out of a manila folder that was the width of a column. I did this in my professional work, too, or would use post-its to window off text so I could focus on reading a little at a time. I tend to put checks in the margin, after I read a paragraph, in case I wander off, so I know where I was before my mind took a walk.

In college I spent hours reading and not remembering a thing. Eventually I realized that I have to take notes to remember anything. Eye to page doesn't stay in my brain, but eye to page to pen does. Why? I don't know. I used to have a photographic memory. (my college recreation may not have helped) But, whatever. I have lost a lot of my memory, and if I didn't have pictures, and if I hadn't kept journals, I wouldn't remember much at all. This is good and bad. Hopefully your son won't have that issue.

I have learned that if I want to remember anything, I need to write it down. I text myself regularly. Before texts, I used to carry an index card or a post-it in my pocket every day to write down things I need to remember. I used to be brilliant; my brain is slowly rotting; it sucks; I have to learn to deal with it. Your son will learn to deal, too. Meds can be helpful, but they don't cure everything. Coping skills are super-valuable. If you can find a book on dialectical behavior therapy, I think you'd find it useful. (or just google it, and take a read; there are workbooks on it, at book stores, that I think are really good) Basically, DBT helps people be more self-empowered and responsible about stuff. It's groovy shit.

Anyway, if you are having any icky re: is this my fault/hereditary crap, please don't take a lesson from my mom, who got so shame>fear>anger when she realized I had epilepsy because I got in trouble at school that she smashed all of my Monkees tapes one by one. :lol: I remember getting mad at my mom, asking her how dare she have a child that would be sick. Her answer: I didn't know.

And it's true. She had no idea she was sick, back then. Nobody is like, "oh, I'm fucked up. Let me go have some fucked up kids, so they can live the hell I do!" Parents do their best, and most parents really mean well, as I'm sure you do. :heart: It doesn't matter so much why or how he is the way he is; it just matters that you do what you can to get him the best help he can get, whatever you decide that may be. You're a caring, loving mother. I'm sure you will figure this out, one way or another. (and if you have personal whatever re: you taking meds, and you don't want him to take meds because you don't want you to take meds, please remember that as similar as parents' and children's brains can be, they are also uniquely their own).

I'm not saying you should medicate your son. I'm so not a doctor. I'm just hoping that your own feelings about neurological meds aren't ones that could get in the way of getting him help he needs, 'cause in the end, this is about him, not you. I will now duck, because maybe that will be received wrong, but please know that I mean well, and I have no idea what you feel about you taking meds.

I have just seen my mom's feelings about her shit affect my shit, so I know that such feelings are both normal and within the realm of possibility, and by the time she was done smashing all my Monkees tapes, she was ready to do stuff like get me to her doctor for some testing. I still go to the same doctor. I think once she got over herself and the whole realization that my shit came from her shit, she was able to get her head on, and for the most part, things have worked out for the best, obnoxious icky parts notwithstanding. Like, I don't really have seizures, 'cause they caught my sick early.

If she hadn't been sick herself, she wouldn't have known what was up with me so soon, and I might've wound up arrested or dead or having it worse than I do (or spent years in the hospital before they figured out what was wrong, like she did!), which would totally suck way more than having some visual memory issues and a big pharmacy bill every month. :)

Hi, my name is Sarah, and I make lots of lemonade. Feel free to tell me to fuck off. And using different types of text attributes helps me read long things more easily, too. :lol: :heart:

[Mama Kel]

His IEP has been discontinued as of last friday. The teachers don't believe he needs it. :lol: I hate the school district we live in. We are actually talking about moving. Makes me sad, but our childrens education comes first right?


Take him off his meds, that will change! :funny1: J/K Where are you?

[In A Silent Way]

My daughter is taking Tenex, which is actually intended to lower blood pressure but is used off-label to treat Tourette's. It stops tics and reduces some of the compulsive behavior.

I'd love for her to be a Strattera, but she refuses to swallow tablets and Strattera has to be swallowed whole. I'm waiting impatiently for the trans-dermal patch to be approved.

The tough thing about this is that she's the one with the diagnosis, but we're the ones going crazy. :cheesy:

[Wende]

Take him off his meds, that will change! :funny1: J/K Where are you?


He hasn't been on meds in over a year and half.

It's powerful shit, I was on them for about 5 years and since I stopped taking them, about 6 months now, I don't want to beat the hell out of things. I was evil. Now, i'm just myself, which happens to be a loveable, disorganized, fun, messy, outgoing, person. :lol:

[sarah b.]

oh; the straterra I take is a capsule (spansule, actually). Hang in there. :heart:

[soulshiny]

no experience here, but was wondering if you've checked into a homeopathic doctor?

sending lots of love you way.

hey...if you do move try to mve down near jacky and i...you'd have two very cute kids you could babysit for (I saw in another thread you would love to watch kids)

[Wende]

Um, I would so travel to watch your kids. :)

[Mama Kel]

He hasn't been on meds in over a year and half.

It's powerful shit, I was on them for about 5 years and since I stopped taking them, about 6 months now, I don't want to beat the hell out of things. I was evil. Now, i'm just myself, which happens to be a loveable, disorganized, fun, messy, outgoing, person. :lol:

If he's having such a hard time, how can they discontinue services? Are you in NY?

[Wende]

Yes, I am in NY. He's not utilizing any of them. He doesn't need time and half on tests, he's always the first done. Of course it's all wrong, but that is what he is choosing to do. He sits up front no matter, because he's the distracting one. What else was on it? Oh yea, positive reinforcment?!?! What else? Anyway, the 504 was kind of silly if you ask me.

[foo]

how old is he?

[Wende]

13, 14 in March

[foo]

wow how time flies!
Hi Wende , remember me? Jen is same age...... I am a teacher 3rd grade. I use to teach 1st and I had a student very ADD. I would give him a koosh ball. He would play with it when I was teaching and it seemed like he wasn't paying attention to me but it helped him! I noticed he needed something in his hands. A paperclip anything he could "play" with.
They have these transparency things that can help him keep his place when he is reading... I would say something about the iep gone they need to add things these type of things not take the whole thing away! Add the transparencies, ask to talk to the head ESE person. Tell them you need help. Tell the he needs help not help taken away. PM me and I will give you my phone number if you want. I have had students with ADD not on meds. I get that it is a choice. I am not sure all teachers do :-( I had a "secret" signal with a student. All it took was me walking over and standing next /behind him. He knew that meant he was off task. No words needed to be spoken. We did nonverbal clues. But we talked and explained to him if I walked over that is what it meant. He wasn't in trouble. Just needs to get back on task.

[Mama Kel]

Yes, I am in NY. He's not utilizing any of them. He doesn't need time and half on tests, he's always the first done. Of course it's all wrong, but that is what he is choosing to do. He sits up front no matter, because he's the distracting one. What else was on it? Oh yea, positive reinforcment?!?! What else? Anyway, the 504 was kind of silly if you ask me.

He may not need those adaptations, but you can add others. Like I stated earlier - things like fidgets in his desk, sitting on a large exercise ball instead of a chair, maybe he needs a 1-to-1 aide for tests so that he doesn't rush through?

[heynow]

so he has an IEP and the school refuses to follow it?What's written into it,is there any one on one,or pullout time.An IEP is a legal contract that must be followed.

[Erinisme]

i think 1 on 1 aides are wonderful! esp when kids are rushing through tests. one of his adapations can be reading each question aloud to his 1 on 1. This way he is FORCED to read the quesiton and not just pick the first answer he sees :)

also I remember reading an article recently I think LF posted it about dairy and ADD. It seems that Casin a main ingredient in cheese and stuff was a major contirbutor to AD
HD symptoms.

Have you tried the elimination diet with him at all?

[Nevrmore]

Have you tried the elimination diet with him at all?


I have a friend who SWEARS by gluten free as a way to curb ADHD.

[Nevrmore]

Hey SarahB.

With the Strattera, do you have any sexual side effects? My ADD (no H) is starting to kick my ass again, now that Karys has weaned and ALL my hormones have come back. I've been thinking about meds, but the adderol and ritalin KILLED my sex drive and ability to have an orgasm

((and now you all know way more about me than you ever needed to know))

[Erinisme]

Hey SarahB.

With the Strattera, do you have any sexual side effects? My ADD (no H) is starting to kick my ass again, now that Karys has weaned and ALL my hormones have come back. I've been thinking about meds, but the adderol and ritalin KILLED my sex drive and ability to have an orgasm

((and now you all know way more about me than you ever needed to know))

one of the major reasons I love this board, I know more about most boardies then i need to :heart: :lmao:

[sarah b.]

ravn, no sexual side effects w/straterra (probably because it's not a speed, like ritalin and adderall are, so it's working on a didderent part of the brain).

anyone looking into dietary mods, please know that it's spelled casein. if you want to do less dairy, there are a bunch of websites, out there. I think the old board is still accessible. there was a thread on this topic on its food board.

I did check with my mentor, and his ADD patient is taking herbs.
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[Nevrmore]

Thanks Sarah. I'm always leary of meds, but not being on them is affecting things, too. It's hard to make things "work" when you can't focus on what you're doing. :blush:

[sarah b.]

I hear ya. I tend to make lists of what I have to do and scratch stuff off.

sometimes i'll set a timer to "just" do something for a couple of minutes to get me on it (then let myself go into hyperfocus, if that's cool, with an alarm set for later). I have alarms going off a lot, for stuff, actually, these days. every five or 10 minutes, in the morning, when I'm trying to get out of the house.

The PDA phone is real handy for that, though i'm still a fan if lists on paper, too.
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[Wende]

I focus a LOT more if someone dismantels my computer before he leaves for work.

[sarah b.]

when i'm trying to get out the door to work, going anywhere near the computer is a bad idea. I even find having the TV or music on very not-helpful. the alarms going off every 5 or 10 minutes do help me keep on task. if I set it in 15-minute increments, I can go on the computer for 15 minutes, but then I get off when the alarm rings.

---------

Also, here's a dedicated ADHD board. I've been on other boards on this site; they tend to be really good.
http://brain.hastypastry.net/forums/forumdisplay.php?f=77