View Full Version : What to do when nothing works for ADHD


makinna021
11-09-16, 06:51 PM
Hi Everyone,
My youngest son is 7 and has been diagnosed with adhd/add combined. He is in 2nd grade...we started our journey reluctantly in Kindergarten...Vyvanse worked great until it wore off and them he became very very angry....this happened with all stimulants....next we tried non stimulants...straterra, intuniv, amblify(worked some but gained 30lbs in a little over a year)....now we are on prozac (just got email today that he is not focused, not following instructions and tried to glue his chin to his desk)...has anyone had luck on off labels medicines for adhd.....he has anger issues....he gets agrravated so easy....nothing has really helped that....has anyone ever had nothing work right, I feel so bad having to try so many meds. Thanks so much!

dvdnvwls
11-09-16, 06:57 PM
Don't feel bad about trying medications - that's what you're supposed to do when the first one doesn't work.

Were there any on that list of medications that you rejected after less than one month because of bad effects? Maybe one of those deserves a second try.

What do you believe are his main sources of stress at home? How about at school? How sure are you that you've identified them correctly?

Caco3girl
11-10-16, 10:32 AM
My 14 year old son had a similar reaction to Vyvanse. It wore off and he became such an angry kid! Ritalin (4 hour version) kept my son pretty calm, almost too calm, I think it made him more loopey and I didn't think that was possible! Concerta has worked fairly well. it doesn't make him all of a sudden totally average, but it does clear up some of his confusion. We have tried I think 5 different meds...it can be a circus act for sure trying to find one that works okay without bad side effects.

I have a 7 year old daughter in second grade....I have to say, she isn't very focused and I could for sure see her gluing her chin to the desk. One of the issues with diagnosing so young is that it is very common to have a non adhd 7 year old glue their chin to the desk, so how do you tell what is ADHD and what is being 7?

I'm not judging you or telling you you should not have had your kid diagnosed so young. Sarasweets on here had her son diagnosed at age 3, and that really worked for her and was necessary. For my daughter, who we suspect is ADHD and Dyslexic, I am going to wait until 4th grade to see if she grows out of some of these childish behaviors before we get the diagnoses and attempt meds. Perhaps you can give your son more time to see if he does the same?

ToneTone
11-13-16, 07:56 PM
Questions:

1.) If he didn't have the crashes, would you judge the medication as effective and helpful for your son?

2.) What does the prescribing doctor say when you report the crashes?

3.) Is the prescribing provider a pediatrician or psychiatrist and do you think this person is really sharp?

Tone

sarahsweets
11-16-16, 10:34 AM
Hi Everyone,
My youngest son is 7 and has been diagnosed with adhd/add combined.
Are you sure nothing more is going on? Have other things like anxiety, depression and learning disorders been ruled out?


He is in 2nd grade...we started our journey reluctantly in Kindergarten
Some kinds absolutely require early intervention- my son did. But others like Caco-girl take a wait and see approach? Is his behavior totally out of control with no meds? Is he a danger to himself or others? Stuff like running into traffic without looking, risk taking behavior?


...Vyvanse worked great until it wore off and them he became very very angry....this happened with all stimulants....next we tried non
When you say all stimulants, can you share which ones? Did you try booster doses with the long acting ones?

stimulants...straterra, intuniv, amblify(worked some but gained 30lbs in a little over a year)....now we are on prozac (just got email today that he is not focused, not following instructions and tried to glue his chin to his desk)

Just curious- why did your doctor decide to treat the adhd with prozac or abilify? Those are usually reserved for stuff like clinical depression, bipolar and anxiety. Does he have those things too?

...has anyone had luck on off labels medicines for adhd.....he has anger issues....he gets agrravated so easy....nothing has really helped that....has anyone ever had nothing work right, I feel so bad having to try so many meds. Thanks so much!
Personally with all three of my adhd kids, I have never had success with anything off label for the adhd. For myself, I kind of had some luck but meds are tricky and take patience, time and willingness to exhaust all options before throwing in the towel.

makinna021
11-16-16, 11:28 PM
Thank you so much for all your responses.

The first medications we tried all stimulants worked, but the side effect of the anger was to much. (Vyvanse, Quillivant, Focalin..I maybe missing one more)...all had the anger when coming off....next we tried non stimulant intuniv, straterra , ambily and then prozac....we just switched to prozac bc of the weight gain with Abilify...but have since went back to Abilfy bc the prozac did not work....the abilify does work fine at school...just did not like the weight gain....he definately does need medicine at school, bc he cannot focus, follow directions or stay in his seat( grades go way down when off medicine)...on abilify he does fine.

He does have dyslexia and has been put on the 504 plan and goes to the dyslexia teacher...they have been wonderful with him...When we first started the journey our family doctor put him on vyvanse, but after the major anger issues, I asked if he felt we needed to be referred to a specialist and now we go to a pediatric psychiatrist ...we had him evaluated as well... The school work does not worry me at all, it's his anger at times (nothing like he had when he came off those stimulants) but is is enough that I worry...he does not harm himself or others, he is normal rough 7 year old boy...and i did have to chuckle about him trying to glue his chin to his desk..lol...that was all him...

the doctor is thinking he may have a mood disorder...I am not so sure...I have thought about getting a second opinion...she did say we can do a physiological evaluation, but i need to email her back bc we did do one in kindergarten so not sure what she means...I do have OCD and depression runs in both sides of my family...my husbands Mom's side has some bi polar..but i really do not think he has that...we are fixing to go to family counseling since the anger is affecting all of us, maybe there is something there we do not see....

our main problem is trying to figure out if he is just being acting out and being disobedient or if there is really something wrong. come to think of it, he has made comments in the past that he is going to kill himself or make comments about knives...he does not do this often, but i really think he says these things bc he knows that i get upset....we are really being extra strict with disipline right now , trying to figure out if it is him or something else...sorry I am rambling.

sarahsweets
11-17-16, 05:21 AM
Thank you so much for all your responses. The first medications we tried all stimulants worked, but the side effect of the anger was to much. (Vyvanse, Quillivant, Focalin..I maybe missing one more)...all had the anger when coming off...
Has he tried dexedrine or adderall? Those are amphetamines like vyvanse but their mechanism of action is different, Dexedrine tends to be the most mild when it comes to side effects. Focalin is methylphenidate-like ritalin. I am Bipolar and I can tell you that anything from that class of drugs gave me horrible mood swings. I take adderall and dex now, and its much better.

about him trying to glue his chin to his desk..lol...that was all him...the doctor is thinking he may have a mood disorder...I am not so sure...I have thought about getting a second opinion...she did say we can do a physiological evaluation, but i need to email her back bc we did do one in kindergarten so not sure what she means..

Are you sure thats so far fetched? I am thinking that because the abilify works so well, a mood disorder is possible. When you say physiological, do you mean that or do you mean something like neuro-psychology or psychological? I ask because I cant figure out why a physiological eval would be necessary or if it would help.

.I do have OCD and depression runs in both sides of my family...my husbands Mom's side has some bi polar..but i really do not think he has that...we are fixing to go to family counseling since the anger is affecting all of us, maybe there is something there we do not see....our main problem is trying to figure out if he is just being acting out and being disobedient or if there is really something wrong. come to think of it, he has made comments in the past that he is going to kill himself or make comments about knives...he does not do this often, but i really think he says these things bc he knows that i get upset....we are really being extra strict with disipline right now , trying to figure out if it is him or something else...sorry I am rambling.
i think therapy would be very useful for everyone. What do you mean by discipline though? ADHD kids do much better with rewards vs consequences or discipline and unless those consequences are immediate and relevant, they wont help like you want them to.

Caco3girl
11-17-16, 11:40 AM
I am dsylexic and I can say without a shadow of a doubt that sometimes peoples reactions to me cause anger in me. Society has told us that there are only a handful of ways to do things...dyslexic people don't typically follow conventional thinking.

I remember getting so mad at my math teacher. While doing an Algebra problem it occurred to me that the whole problem would be a LOT easier if I multiplied the whole equation by a negative 1. This made all the negatives into positives and made the problem much less cumbersome. Well, needless to say the "POINT" (according to the teacher) of the problem was to get us to work with negative numbers, he told me I couldn't solve the problem the way I did. I got the right answer, I just did it in a way that was unconventional and unconventional isn't allowed in school.

My daughter, who is 7 and likely dyslexic, baffles her teachers. She is always polite but she questions the teachers nearly non-stop on why they didn't do something this way, or that way. Thankfully she has very open minded teachers that allow her to be different and don't tell her she is wrong for the way she thinks. Her one teacher actually used the phrase "It's like there is a hidden genius in there, she thinks in steps way beyond HOW a second grader should be thinking, but then we get to something that is basic and she is stumped, it is very peculiar."

You should look up the site dyslexic advantage. I can say now that I am out of school, and very good at my job, my thinking WAY outside the box is an advantage. However, in school conformity was expected and it wasn't something I could do and it really frustrated me.

sarahsweets
11-22-16, 10:02 AM
You should look up the site dyslexic advantage. I can say now that I am out of school, and very good at my job, my thinking WAY outside the box is an advantage. However, in school conformity was expected and it wasn't something I could do and it really frustrated me.

Can you explain this more? WHen I googled it all I could find were books about it and reviews/sales of the books.

makinna021
12-14-16, 06:46 PM
Thank you everyone. Sarah we have not tried Dexedrine that I know of, will check........... we have appt tomorrow. His Teacher today said she feels there is something going on with his memory. She can ask him for example to spell a word and he does, but when she comes back to it he cannot..he is on the 504 but feels he needs to be tested for special ed. Question.....I remember you saying Sarah that nothing off label helped their adhd..is this particular symtom adhd and maybe the abilify is just not helping with it...she said his focus is fine.

Caco3girl
12-15-16, 12:07 PM
Can you explain this more? WHen I googled it all I could find were books about it and reviews/sales of the books.

Sorry, didn't see this. I'm not sure what's going on with the website at the moment, it doesn't appear to be up and running. Brock and Fernette Eide put the book and the site together and their take on dyslexia is that it is a major advantage, not a disadvantage. It is the dyslexic people that think sooooo far out of the box that they truly come up with the new and innovative things.

These notable people were/are Dyslexic:

-Richard Branson
-Alexander Graham Bell
-Leonardo da Vinci
-Thomas Edison
-Albert Einstein
-Galileo
-Steve Jobs
-Pablo Picasso
-Steven Spielberg
-Nikola Tesla
-Jules Verne

MOST people who revolutionized an industry or changed the standard protocol of how we as a society view things, in a MAJOR and global way, were dyslexic. That is why they call it the Dyslexic Advantage.

Steve Jobs wrote a wonderful poem that explains Dyslexia, although that may not have been his intention at the time, it has been taken by many of us as a Mantra of sorts:

Here's to the crazy ones, the misfits, the rebels, the troublemakers, the round pegs in the square holes... the ones who see things differently -- they're not fond of rules... You can quote them, disagree with them, glorify or vilify them, but the only thing you can't do is ignore them because they change things... they push the human race forward, and while some may see them as the crazy ones, we see genius, because the ones who are crazy enough to think that they can change the world, are the ones who do. -Steve Jobs

Caco3girl
12-16-16, 11:04 AM
Can you explain this more? WHen I googled it all I could find were books about it and reviews/sales of the books.

I don't know what was going on on the internet yesterday, here is the website:
dyslexicadvantage.org

sarahsweets
12-16-16, 11:40 AM
Their misson statement:
The mission of Dyslexic Advantage is to promote the positive identity, community, and achievement of dyslexic people by focusing on their strengths.

Our vision is a world where dyslexic people are known for their strengths.
Its a noble idea but I am always bothered by semi-revealed articles and stuff that you need to pay for to read. Not saying profit is bad, I just dont like how the site seems to be promoting such a positive thing yet not allowing people who cant afford or dont want a subscription.

I think the idea of focusing on strengths is wonderful but I do not believe saying dyslexia is an advantage is fair or accurate. Impairments are vast and sometimes debilitating and I think trying to promote the idea that its a positive, doesnt validate the people who struggle, wishing they didnt have it, or feeling guilty if they dont live up to these standards.

ginniebean
12-16-16, 12:24 PM
I am dsylexic and I can say without a shadow of a doubt that sometimes peoples reactions to me cause anger in me. Society has told us that there are only a handful of ways to do things...dyslexic people don't typically follow conventional thinking.

I remember getting so mad at my math teacher. While doing an Algebra problem it occurred to me that the whole problem would be a LOT easier if I multiplied the whole equation by a negative 1. This made all the negatives into positives and made the problem much less cumbersome. Well, needless to say the "POINT" (according to the teacher) of the problem was to get us to work with negative numbers, he told me I couldn't solve the problem the way I did. I got the right answer, I just did it in a way that was unconventional and unconventional isn't allowed in school.

My daughter, who is 7 and likely dyslexic, baffles her teachers. She is always polite but she questions the teachers nearly non-stop on why they didn't do something this way, or that way. Thankfully she has very open minded teachers that allow her to be different and don't tell her she is wrong for the way she thinks. Her one teacher actually used the phrase "It's like there is a hidden genius in there, she thinks in steps way beyond HOW a second grader should be thinking, but then we get to something that is basic and she is stumped, it is very peculiar."

You should look up the site dyslexic advantage. I can say now that I am out of school, and very good at my job, my thinking WAY outside the box is an advantage. However, in school conformity was expected and it wasn't something I could do and it really frustrated me.

I am prettt sure the irritation and anger is a side effect of the meds wearing off as the mother stated. I won't say there is never an advantage in seeing the qorld differently but generally these advantage sites undermine the difficilty and suffeeing of people with LD's and developmental disorders. If every dyslexic person was a genius or produced massive achievements it would be credible but really it's the odd few

Caco3girl
12-16-16, 03:40 PM
Their misson statement:

Its a noble idea but I am always bothered by semi-revealed articles and stuff that you need to pay for to read. Not saying profit is bad, I just dont like how the site seems to be promoting such a positive thing yet not allowing people who cant afford or dont want a subscription.

I think the idea of focusing on strengths is wonderful but I do not believe saying dyslexia is an advantage is fair or accurate. Impairments are vast and sometimes debilitating and I think trying to promote the idea that its a positive, doesnt validate the people who struggle, wishing they didnt have it, or feeling guilty if they dont live up to these standards.

Actually, the site is a non-profit .ORG I don't pay to be a member and I haven't had issues around the website of things being locked.

While certain things at school were more difficult I think of my dyslexia as an advantage, and so does my boss. Yes, my brain is wired differently, but I think that is a wonderful thing....as I listed above. It's those of us who think differently that actually make the world different.

Caco3girl
12-16-16, 03:45 PM
I am prettt sure the irritation and anger is a side effect of the meds wearing off as the mother stated. I won't say there is never an advantage in seeing the qorld differently but generally these advantage sites undermine the difficilty and suffeeing of people with LD's and developmental disorders. If every dyslexic person was a genius or produced massive achievements it would be credible but really it's the odd few

You say it's the odd few....those are pretty much the greatest scientific minds since the dawn of time. I'd say that's pretty significant. Yes, some dyslexic people are just normal citizens, but even in our normality we are not normal. I don't think the site is trying to undermine anything, I think it's trying to broaden to concept that there are MANY types of dyslexia and grouping all of us together and calling it a reading disability is just wrong.

P.S. What the mother describes in her posts sounds more like dyslexia to me than ADHD, maybe that's why the ADHD things aren't working.

daveddd
12-16-16, 11:14 PM
You say it's the odd few....those are pretty much the greatest scientific minds since the dawn of time. I'd say that's pretty significant. Yes, some dyslexic people are just normal citizens, but even in our normality we are not normal. I don't think the site is trying to undermine anything, I think it's trying to broaden to concept that there are MANY types of dyslexia and grouping all of us together and calling it a reading disability is just wrong.

P.S. What the mother describes in her posts sounds more like dyslexia to me than ADHD, maybe that's why the ADHD things aren't working.

I'm not really sure what the OP's describing about her son would be the result of a learning disability . I'd hope her teachers, doctors, and her would see that he only got frustrated while trying to read or whatever his LD effects.

meds
It could be the abilify affecting his memory also, possibility

I know no one wants to start adding meds to fix meds, but i know a mild anti psychotic like abilify or something else is often given along with an amphetamine to take care of those reactions.

good luck

Caco3girl
12-19-16, 10:50 AM
I'm not really sure what the OP's describing about her son would be the result of a learning disability . I'd hope her teachers, doctors, and her would see that he only got frustrated while trying to read or whatever his LD effects.

meds
It could be the abilify affecting his memory also, possibility

I know no one wants to start adding meds to fix meds, but i know a mild anti psychotic like abilify or something else is often given along with an amphetamine to take care of those reactions.

good luck

The OP stated her son was dyslexic as well, and many people would be amazed at how much dyslexia affects a person in an average day. I truly dislike that it is labeled as a reading disorder, it isn't.

It often manifests itself in reading and math but really it is about a re-wiring of the brain. I have no problems reading, I can actually read to myself and out loud very quickly and am freaky good at math, and yet I am moderately to severely dyslexic.

Lunacie
12-19-16, 01:03 PM
The most predictable thing about adhd (and autism) is the un-predictability.

One day the person is focused and can remember what they need to remember.

The next day those "files" are "unavailable." You know the files are still there,
but they just can't be found. Sometimes from one hour to another, like with your
son's ability to remember how to spell something. After he spelled it right the
first time, that "file" went into the wrong "drawer."

That has to be one of the most frustrating things about this disorder for me.

Kids with adhd do need structure, but Sarah is right about rewards working better
than discipline/punishment.

In the sticky threads at the top of the parenting forum here, look for something
called "Dizfriz's Corner." Wonderful explanations and information, well worth
the read.

ginniebean
12-19-16, 01:37 PM
You say it's the odd few....those are pretty much the greatest scientific minds since the dawn of time. I'd say that's pretty significant. Yes, some dyslexic people are just normal citizens, but even in our normality we are not normal. I don't think the site is trying to undermine anything, I think it's trying to broaden to concept that there are MANY types of dyslexia and grouping all of us together and calling it a reading disability is just wrong.

P.S. What the mother describes in her posts sounds more like dyslexia to me than ADHD, maybe that's why the ADHD things aren't working.

the meds for adhd are working the kid is crashing hard. Perhaps her doctor is not familliar enough with this side effect to prescribe something to help him in the evenings

I'll stand by my statement that the vast majority of people with dyslexia are average in ability and intelligence.

makinna021
12-19-16, 04:44 PM
Thank you all so much for your responses..it is so valuable to me to hear your experiences and what has worked and what has not... New update.. We are waiting on a call back from his pediatric phychiatrist about the abilify he is on... Turns out it is just for his mood and does not work well for adhd.. So I am a bit confused why we are not on anything for it.... Maybe something for the adhd will help with his short term memory... She has told us to read up on Wellbutrin for anxiety/ focus.. And maybe dexatrine( maybe give a stimulant a second chance .. First time caused major anger but that was two years ago... His grades have been good so maybe that is why the dr has not given him anything, but they have been good largely bc the teacher helps him a lot and as things get harder his grades with suffer if we don't get on the right track.. Hope this makes sense.

sarahsweets
12-20-16, 06:52 AM
You say it's the odd few....those are pretty much the greatest scientific minds since the dawn of time. I'd say that's pretty significant. Yes, some dyslexic people are just normal citizens, but even in our normality we are not normal. I don't think the site is trying to undermine anything, I think it's trying to broaden to concept that there are MANY types of dyslexia and grouping all of us together and calling it a reading disability is just wrong.

P.S. What the mother describes in her posts sounds more like dyslexia to me than ADHD, maybe that's why the ADHD things aren't working.

It seems like once a week there is some list about famous people or briliant people with adhd or something else. I swear I have seen claims that Einstein was adhd, bipolar and variety of all things. I would love to see solid proof that these lists were true and Ill be happy to eat my words. I dont think lists of successful people matter much because there are so many other factors in play and unknowns the could have affected how these people were able to be so brilliant or successful. We dont know what their coping skills were like, what kind of life they grew up in, what kind of academic help they may have had. All we have are feel good lists which is fine-but maybe not so relevant in our current treatments for adhd.
I recently read an article about 'emotional genius' and how its more important then your typical SAT genius. It made me feel great and I totally identified. But what good does it do me other than make me feel awesome? The severity of my issues have made the good stuff hard to get or maintain.

By definition, in order for something to be an disbility there must be impairments.Maybe some people are not imparied by whats typical, but impairment is what makes it a disorder with symptoms beyond the person's control.

Caco3girl
12-20-16, 09:16 AM
Thank you all so much for your responses..it is so valuable to me to hear your experiences and what has worked and what has not... New update.. We are waiting on a call back from his pediatric phychiatrist about the abilify he is on... Turns out it is just for his mood and does not work well for adhd.. So I am a bit confused why we are not on anything for it.... Maybe something for the adhd will help with his short term memory... She has told us to read up on Wellbutrin for anxiety/ focus.. And maybe dexatrine( maybe give a stimulant a second chance .. First time caused major anger but that was two years ago... His grades have been good so maybe that is why the dr has not given him anything, but they have been good largely bc the teacher helps him a lot and as things get harder his grades with suffer if we don't get on the right track.. Hope this makes sense.
Being that he is so young the testing that can be done is limited. My 7 year old is "suspected" of being ADHD and Dyslexic but the school said that testing really should wait until about 4th grade. They feel that by then she would be able to take the written tests and they can better gauge the severity of her issues. Up until then it's hard to test which parts of her learning are and will be affected by the disabilities. (EDIT: I should add she's a happy kid who likes school, she isn't having anger or frustration issues at the moment, she's just very different than her peers in how she goes about things.)

One thing that seems to be universal is that as hormones change the child's needs change. If I could gauge my sons progress I would say that from age 2-7 he was a 3 on the ADHD scale of 1-10. From 7-11 he was about a 5, from 11-14 (present) he is a 10! While the ADHD symptoms were always there they have amplified over the years until he really couldn't function at school without extreme intervention.