TiredSoul

Warrior Mom since 2007
I've charted all the stimulants my son has taken for nearly the past 3 years. Here is the pattern I am seeing: At the lowest doses, it is not effective. The next dose up curbs some of the annoying behaviors, but not totally effective in any way (although way better than when he is un-medicated). The next dose up causes extreme aggression.

Here is what he has been on so far in this journey:

Focalin XR 5mg 3 mos.
Adderall XR 10mg 18 mos.
Vyvanse 20mg 1 mo.
Vyvanse 30mg 1 mo.
Vyvanse 40mg 1 mo.
Adderall XR 10mg 1 mo.
Adderall XR 15mg 1 mo.
BrightSpark (Naturopathic) 3 weeks
Adderall 5mg in A.M. 5mg after school 1 week
Concerta ER 18mg 1 mo.
Concerta ER 27mg 7 mos.+
Intuniv 1mg+ Concerta ER 27mg 1 week so far

From other's experience with ADHD/ODD and stimulant medications, do you think our pediatrician should be doing something different? It seems like we have just been barely getting by, not anywhere near an ideal situation - and it's been 3 years!! 3 very formidable years -from age 5 to 8. (Sigh) :(

So far I don't see any improvement with the addition of Intuniv, but it has only been one week. Dr. wants him to take 1mg for 15 days, then up to 2mg for 15 days, then check back in. I know most docs titrate this medication by 1mg for one week, then 2mg for one week and so on until the desired result is achieved.

Any advice? I feel like maybe we should have been doing something differently for the past 3 years. I feel like I am screwing up my kid's life even more. I just wish it didn't have to be like this.

Here are the key things we need help with (when on medications):
Verbal aggression
Physical aggression
Inward verbal aggression (I hate myself, etc.)
Purposely annoying everyone
Defiant
Moody/negative disposition
Forgets things (coat, lunch bag)
Not organized
Not responsible - we have to be on top of things all the time

(when not on medications)
It's all of those same things (except the aggression), just way more often/intense.

If you made it all the way thru my lengthy post, thank you! :D
 
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PatriotsGirl

Guest
Has the doctor tried an anti-depressant with the stimulants? I know it is frowned upon with younger children, but I wouldn't think it would be any worse than stimulants, no?
Adderall helped my difficult child focus in school, but it did make her agression worse. Prozac has really calmed her - it is the only thing that ever has. And believe me, we are still not ideal here but it is a LOT better than what we were dealing with. At this point she is at least tolerable to be around.
 

BusynMember

Well-Known Member
I think you should stop seeing the pediatrician because this is not his field...diagnosing why chlldren have certain behaviors. He has used stims for years and they haven't really done the trick. Chances are there is more going on then ADHD. If it were my child, I'd get a private neuropsychologist assessment and then see a Psychiatrist for medication. I don't trust pediatricians for behavioral stuff...just for colds and shots.

Take care :)
 

TiredSoul

Warrior Mom since 2007
Thanks PG. We have never tried an anti-depressant. It was one suggestion of several and we decided to give Intuniv a chance first. I am scared about the anti-depressants. Actually I am scared about all the medications. I'm sure most everyone can identify with that - I don't think it's anyone's first choice to medicate. I wish we didn't have to, but it looks like we do. I just don't know.... I might feel better about trying it, if we could stop the other medications. But that isn't really realistic either, I don't think. It's a tough road. I feel worn out. Worn down. I just want a happy child, and a peaceful family. :(
 
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PatriotsGirl

Guest
I really dragged my heels on medications, too, and all it did was hurt my children. Some kids need glasses, braces, what have you. Ours have a chemical imbalance and need medication for that and that is okay. I finally see mine walking around smiling all teh time for the first time in....well, forever. I can't begin to tell you what a great feeling that is.
 

TiredSoul

Warrior Mom since 2007
Thanks MWM,
I think you are probably right. I know when we started down this road there was nowhere near us to get neuropsychologist testing, but I just looked and see that the place he was diagnosis'd in the first place, has now added a NeuroPsychologist to their staff. I will be making a phone call. It's funny though that there are no psychiatrists there to manage medications.

Thanks!
Jules
 

TiredSoul

Warrior Mom since 2007
That's so awesome PG! I know what you are saying about them needing the medications - I just worry myself with all of the potential negative side effects. You don't see those with glasses, braces, etc. It's hard.
 
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PatriotsGirl

Guest
I gained weight from it. difficult child has not had a single side effect, yet. But, yes, side effects are a risk. The great thing is, if he tries it and has a side effect, you can stop taking it and the side effect goes away. (Though, I must admit the weight gain hasn't gone away yet but I don't think my love of food helps that much...lol.) Seriously, though, there came a time where I had to pick the lesser of the two evils Know what I mean?? We could not go on as we were. My difficult child has always been a difficult child and she will be 17 in two weeks. That is a lot of dragging my heels and a lot of pure heck we went through. I kick myself in the butt for not trying medications sooner. Who knows how much better her high school career could have been had she been on medications sooner. :(
 

smallworld

Moderator
Aggression and moodiness aren't typically part of ADHD so I agree with the need for further evaluation. Neuropsychologists and psychiatrists can also be found at children's and university teaching hospitals.

I don't mean to scare you, but sometimes side effects with antidepressants don't go away on their own. Sometimes they awaken a latent mood disorder that only quiets down with the use of mood stabilizers and/or atypical antipsychotics (I know because it happened to two of my three children). So antidepressants should be prescribed with extreme caution in children.
 

shellyd67

Active Member
My story is quite similar Jules. My difficult child takes Concerta 36mg but it took well over a year to find the correct medication and dosage. We worked closely with psychiatrist and neuropysch who diagnosed him. Intially both said to start difficult child on a stimulant but husband and I were afraid and decided to try Strattera 25mg for about 6months . It helped alittle but not enough with focus and impulsivity. We then tried Intuniv for a month and that put difficult child to sleep in school and made him lethargic. We then met back with- neuropsychologist and he asked me if I was ready to listen to him and try stimulant. So far it works the best. We did have a few increases over the months, but 36mg seems to be the right fit at this time. I would speak with neuropsychologist and give full detail of all medications difficult child has tried. Good Luck to the both of you !
 
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snowbash169

Guest
I've charted all the stimulants my son has taken for nearly the past 3 years. Here is the pattern I am seeing: At the lowest doses, it is not effective. The next dose up curbs some of the annoying behaviors, but not totally effective in any way (although way better than when he is un-medicated). The next dose up causes extreme aggression.

Here is what he has been on so far in this journey:

Focalin XR 5mg 3 mos.
Adderall XR 10mg 18 mos.
Vyvanse 20mg 1 mo.
Vyvanse 30mg 1 mo.
Vyvanse 40mg 1 mo.
Adderall XR 10mg 1 mo.
Adderall XR 15mg 1 mo.
BrightSpark (Naturopathic) 3 weeks
Adderall 5mg in A.M. 5mg after school 1 week
Concerta ER 18mg 1 mo.
Concerta ER 27mg 7 mos.+
Intuniv 1mg+ Concerta ER 27mg 1 week so far

From other's experience with ADHD/ODD and stimulant medications, do you think our pediatrician should be doing something different? It seems like we have just been barely getting by, not anywhere near an ideal situation - and it's been 3 years!! 3 very formidable years -from age 5 to 8. (Sigh) :(

So far I don't see any improvement with the addition of Intuniv, but it has only been one week. Dr. wants him to take 1mg for 15 days, then up to 2mg for 15 days, then check back in. I know most docs titrate this medication by 1mg for one week, then 2mg for one week and so on until the desired result is achieved.

Any advice? I feel like maybe we should have been doing something differently for the past 3 years. I feel like I am screwing up my kid's life even more. I just wish it didn't have to be like this.

Here are the key things we need help with (when on medications):
Verbal aggression
Physical aggression
Inward verbal aggression (I hate myself, etc.)
Purposely annoying everyone
Defiant
Moody/negative disposition
Forgets things (coat, lunch bag)
Not organized
Not responsible - we have to be on top of things all the time

(when not on medications)
It's all of those same things (except the aggression), just way more often/intense.

If you made it all the way thru my lengthy post, thank you! :D

Hi, I am new to this group and I too am frustrated with my son and ODD. I noticed at the age of 2 1/2 that things were not right and have been getting help since then, he is now 8 years old.
 

TiredSoul

Warrior Mom since 2007
Thanks everyone. I am now arguing with the office that diagnosis'd him to get him a neuropsychologist evaluation - and in the mean time, he got suspended for the day. That's in another thread. Uggh.
 

LittleDudesMom

Well-Known Member
Jules,

You will probably find as many differing opinions regarding what we think you should do at this point as stims your son has tried! Each of our children is very different. I will try, as much as possible, to briefly tell you my son's story.

He was always a little high-strung, a little more aggressive than the typical boy. He was also a typical case of adhd! The addition of stims made a huge difference in his impulsivity and ability to focus in school - even his handwriting improved. After a successful 1st grade year on concerta, we saw his ability to focus lesson a few months into 2nd grade. The doctor upped the dose from, if I remember concerta dosing correctly, 18 mg to 27 mg. Almost immediately we saw his aggitation and frustration increase which led to some pretty aggressive behavior (if you read the side effects on the stimulant rx, increased aggitation and anxiety are there). That in turn led to a lot of calling attention to him in school, the beginnings of some negative feelings about himself, his comparing himself to his peers, his feelings his teacher didn't like him, and some pretty serious melt downs at school.

His therapist suggested a psychiatrist because she felt he might be suffering from "situational depression". The psychiatrist agreed and my son was rx'd a low dose of remeron (30 mg) which he started slowly (7.5 mg for two weeks, then 15, then 30). This helped immensely! Within 2 weeks I saw an "eveness" about my son. Now, this is not to say that he still didn't have issues, but they decreased in severity and were less often.

Fast forward about a year and a half to the second half of 3rd grade. We saw some increase in frustration and anxiety (which we actually were able to pinpoint some causality by the end of the school year to learning disabilities that were not apparent in the lower grades). His psychiatrist suggested we add a very small amount (nontheraputic) of seroquel. Our psychiatrist said it had been very successful for some of his patients, especially adhd boys, who had "short fuses". 4th and 5th grade, while not perfect or typical, improved.

By the beginning of middle school he was off both the remeron and the seroquel and, we are in the 3rd week of high school with his only medication being 30mg of vyvanse. My son is, and always will be, a difficult child. He struggles every day to stay focused, to remain calm, etc., in school.

Now, I tell you this story to show you that our kids are all different. Many times a small dose of an antidepressant helps these kids. Other times, it doesn't. My son was evaluated, on my dime, at our local teaching hospital's pediatric mood disorder clinic and no present or emerging mood disorder was apparent. You just never know.

You are right to be a little fearful of all the medications. We all are. But very often we have to outweigh the risks associated with a medication to the benefits experienced by our children. If a medication is able to give our kids a more typical experience or improve the quality of their social interactions, or remove the strain from the family, it very often is worth it. Only you can speak to what is right for your situation.

You need to have a good psychiatrist (not a pediadoc) that you have confidence in that allows you to be a partner in your son's treatment and then, as your son grows, your son taking the partnership role.

Sharon
 

TerryJ2

Well-Known Member
I'm with-MWM--go to a child psychiatrist. You're getting into controlled substances and pediatricians are not usually good at that sort of thing. Go through the phone book if you have to.
If you have your own therapist, ask for referrals. They ought to know who is out there.

GREAT list you came up with! Keep a copy for the dr, for sure.
 

TiredSoul

Warrior Mom since 2007
Thanks everyone! I really appreciate the support and advice.

Terry, I have detailed records of everything. I started all of those after finding this website back in 2007. Everyone talked of the importance of it and I totally agree. On his medication log, I also have the dates and his response to the various medications. It is very helpful.

Where I live, there are limited tdocs. Our pediatrician-doctor keeps wanting us to go to counseling. The psychiatrist just wanted to talk about the different drugs and then said we could go to someone else for strategies and counseling. The original therapist just kept telling us what ADHD is over and over and over - never got to a plan of action so to speak. I have most every book recommended here and elsewhere. I am exhausted and I can never get away from it for even a little bit. My mind doesn't let me. And after all of this, having him tell me each night over and over "I hate you - I wish you weren't my Mom". Sad.
 

TerryJ2

Well-Known Member
That is so very sad, Jules. I made a rule that my son can tell me that he's mad at me but he's not supposed to say he hates me. Sometimes I'd have him write "I'm sorry I yelled that I hate you" 50X, or sometimes I'd cut out his allowance or take away computer time. I didn't really care what he felt inside, because I figured he was so immature, he didn't know the difference between hate and anger, anyway. So far, it's been working. (Now he's using the f-word. If it's not one thing, it's another.)
I'm sorry that there are limited tdocs in your area. Even so, I'd branch out and look for others. The one you have is a waste of time. You need to be doing a major plan of action. I agree with-you.
 

TiredSoul

Warrior Mom since 2007
Sometimes I'd have him write "I'm sorry I yelled that I hate you" 50X, or sometimes I'd cut out his allowance or take away computer time.

I would never be able to get my difficult child to *do* something he doesn't want to do like writing sentences. It would never happen. Awhile ago I sat down and made a "bucket A" list. Then I tried to assign consequences to those things. First I could not find any natural consequences, then I looked for logical consequences - couldn't find those either. Then went on to try and figure out 'fines' so-to-speak (ever hear of the highway patrol approach?). Then I realized none of the fines could be things like 'do extra chores', 'write sentences or an apology letter', etc. It can't have anything to do with making him do something - because he won't do it, and then we would have to fine him for that too, since not doing what he is told is in bucket A. It would just perpetuate. So the fines have to be that he looses a privilege. Even then that is hard because I could tell him he can't go play outside - but he really needs that physical release of energy. I also see that I need to make the fines small enough so that he doesn't loose all of his privileges for today, tomorrow, and the rest of the week for things he did today. Know what I mean?? Because if he looses everything then he will just say I don't care, fine, whatever, and he won't change his behavior - it will just get worse. He is sooooo difficult.
 
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Blue Nude

Guest
I would never be able to get my difficult child to *do* something he doesn't want to do like writing sentences. It would never happen. Awhile ago I sat down and made a "bucket A" list. Then I tried to assign consequences to those things. First I could not find any natural consequences, then I looked for logical consequences - couldn't find those either. Then went on to try and figure out 'fines' so-to-speak (ever hear of the highway patrol approach?). Then I realized none of the fines could be things like 'do extra chores', 'write sentences or an apology letter', etc. It can't have anything to do with making him do something - because he won't do it, and then we would have to fine him for that too, since not doing what he is told is in bucket A. It would just perpetuate. So the fines have to be that he looses a privilege. Even then that is hard because I could tell him he can't go play outside - but he really needs that physical release of energy. I also see that I need to make the fines small enough so that he doesn't loose all of his privileges for today, tomorrow, and the rest of the week for things he did today. Know what I mean?? Because if he looses everything then he will just say I don't care, fine, whatever, and he won't change his behavior - it will just get worse. He is sooooo difficult.


Oh my goodness -- this is exactly what I go through with my difficult child. Trying to find consequences feels impossible. She's nearly 14. I've been searching for her "currency" for 10 years.
 
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