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Parents of ADHD Children

Afraid of medication side effects
Keywords:


My son is in fourth grade and was diagnosed with ADHD in second grade.  He has always done well academically, but he struggles with self esteem from always being disciplined in class for talking out of turn and interrupting.  (He does have a 504 plan and great teachers for the most part, but his talking is disruptive regardless and he needs a lot of reminders which embarrasses him.)  His self esteem issues have been off and off throughout the school years with different teachers.  But, these issues have been severe- to the point that he is in therapy for depression symptoms.  It seems to all be related to not feeling good about himself in school.  It is really affecting our whole family to have him go through such a struggle and we know that something has to change for him.  He seems to be feeling worse and worse about himself. 
We are considering homeschooling for next year, as he is also an athlete and we could combine his daily sports practice with online school, which would be ideal for him. 
Our other option is to keep him in public school and try ADHD meds.  We have an appointment with a psychiatrist to discuss options in a few weeks.  My issue is this: my husband and I are so scared of the possible side effects of the medications.  We have been researching and almost all of them list the possibility of suicidal thoughts, aggression, hallucination, etc.  In addition, when reading drug reviews online there are a lot of horror stories or kids getting out of control after taking ADHD meds.
My question is this: Are our fears valid?  Has this type of extreme reaction happened with a lot of your kids?  Is this just a very rare occurrence?  I know we will get more information from the psychiatrist but we are pretty much spinning in circles trying to figure out the best way to help our sweet boy.  We welcome any feedback you may have.

Replies

I’m no expert, just a parent, but I can share my experience. I was feeling similar concerns when our psychologist suggested meds for my son when he was 6. There were two things he said to me that convinced us to give meds a try. First he said kids with ADHD can get by without meds, but for many it can be like trying to keep your head above water with a brick tied to your foot. You can do it, but you constantly feel dragged down and it’s exhausting. The second thing he said was to remember if you see side effects from a med that concern you, stop the meds and the effects will go away. It was a long road for us trying to find something that worked AND had no negative side effects but it can be done. Some meds made my son emotionally sensitive or weepy. Some made him angry and a bit aggressive. Some made him too tired to function. Some caused tics and some did absolutely nothing. But we found what works and it helps him focus, controls his anxiety, his impulsivity and allows him to function well. He is 11 now and we’ve had a successful combo for nearly 3 years. It’s not a magic pill, but it makes his life easier and less stressful and allows him to be successful and school. For every article that tells you there could be side effects like suicidal thoughts and aggressive behavior, there are an equal number that will tell you people with untreated ADHD are more likely than average to suffer from depression, anxiety and addiction due to self medicating with drugs/alcohol. Whether or not to medicate is personal and no one person responds to meds in the same way. The only way to truly find out is to try them, observe your child very closely, and see what happens. It’s not easy, so hang in there but I encourage you to be open to trying your psychiatrists suggestions if you feel they could be beneficial.

Posted by brlk13 on Mar 18, 2017 at 11:47pm

Brlk13 said it beautifully.  I was hesitant at first as well, then realized if my son had some other condition that required meds I would not withhold that treatment from him.  Like said above, if an undesirable effect occurs, stop the med.  Also, if the medication is not having a positive result try another one.  It is not an easy road.  Best wishes.

Posted by Natalie K. on Mar 19, 2017 at 1:12pm

I am glad I have finally found a group online I can relate to.  I am a parent of a 13 y/o with ADD and we have struggled for years. We have finally decided to medicate and are so afraid of what to expect.  We are starting vyvanse 20 my daily tomorrow.  Any feedback appreciated about what to expect.  His major symptoms have been inattentive ness,  poor performance in school,  talking when not appropriate, daydreaming in class,  excessive sleepiness, can’t focus, disorganization (severe) and he also has some problems falling asleep at night,  but sleeps during the day.  We have tried everything thing for organization, all else has failed.  County recommended special accommodations @school which we tried but seem to be hitting a brick wall

Posted by Frannnie84 on Mar 19, 2017 at 9:24pm

Here’s the other side, my son was diagnosed with severe ADHD and ODD.  Life is difficult with the meds, on weekends, if he forgets to take the medications, I cannot deal with my son at all.  Meds are like night and day for my son.  With them, he is more like a typical tween (he is 11), he is bratty but engaging and fun.  Without them, he is obnoxiousness on steroids. 

On medication, he can focus at school, his impulsiveness is mostly in check, he gets good grades.  Without medication, he basically disrupts class to the point that he is sent to support services.

Obviously your son is not as severe as mine,  But this can show you just how much medication helps.  My son admits that everything is easier when he is on his meds.  It doesn’t mean he won’t try to not take them.  But he knows life is better on them.

Because of his age, we have been going through a year of change with what works.  The doctor is chalking much of that up to puberty and hormones.  He takes 36 mg Concerta and 2 mg Intuniv in the AM, he also wears a 15mg Daytrana patch.  He gets a 36 mg Concerta at 1:00 pm at school, and takes 1 mg Intuniv at 5:00 pm at home.  (As I said, he has a very severe case of ADHD).

These meds to not take away his personality, actually, they let it shine.  He is engaging and funny and smart.  Without them, the lack of focus and impulsivity and ODD get in the way.

Good luck with your choices.  Please know, meds are not an enemy.

Posted by cmullen17 on Mar 20, 2017 at 1:40pm

@Frannie84 sending you good thoughts as you start this journey. My key piece of advice is watch your son closely and literally take notes on anything you notice that’s different - good or bad- so you can give detailed feedback to the doctor. If you can get his teachers on board to give you written feedback as well that’s an added bonus. As to what you can expect? It really just depends on your child’s reaction. I would say first off, don’t expect extreme changes immediately. Doctors will start with a low dose of any med, see if your child tolerates it and then gradually increase the dose until you’re seeing positive changes without negative side effects. With stimulants like Vyvanse once you hit the right dose you’ll know pretty quickly whether or not they’re helping (or causing issues) because they don’t need time to build up in your child’s system like some of the non-stimulants like intunive or Straterra.  We literally have tried everything on the market except Daytrana. I knew immediately with Concerta and Adderall that they wouldn’t work for him because of the negative side effects. We tried intunive (guanfacine) and kapvay which did not improve his behavior but made him so tired that he was emotional and grumpy. Straterra alone did not help him focus, but we found it improved his impulsivity. Vyvanse alone helped him focus better but he was still impulsive and started to develop some OCD type behaviors. But the combination of Vyvanse and Straterra work well. He can focus, is less impulsive and doesn’t have the negative side effects seen at other times. It’s not magic - he still has an IEP with accommodations, still receives supports from OT and the counselors, still has the occasional meltdown and he still requires redirection but the meds allow him to be directed and stay on task for extended periods of time where without them he cannot. The meds keep him from doing impulsive things like non-stop talking/interrupting, taking off without permission on field trips/family trips, running out into the street without looking, etc. my point is, it could take time and even when you find it, meds alone will not solve all the issues but they will give him the chance to solve them. I wish you the best.

Posted by brlk13 on Mar 20, 2017 at 3:03pm

We’re in a similar boat to you.  Our son in grade 3 is now old enough to feel how different it is, and this is when I said I’d take action.  Private school, and medication.  I’m afraid, not just of side effects, but I also fear that when he gets to be a young adult, we may have medicated him for so long that he will no longer get help from them, yet he’ll require them to maintain the level of attention he would have had if we had never medicated at all.  There isn’t any research that I can find has reassured me. 

This just one of my fears, I dislike the idea of making him shorter, with no other long term benefits (see the latest MTA results).  I fear that he’ll think we don’t love the inattentive him. I fear that he won’t accept his inattentive side either, and in the end, after a few years of honeymoon, meds will be of limited use, and that he will have trouble accepting his imperfect self.

Maybe the best I can do is to realize there are no answers for me out there. I will just go forward assuming there are no miracles; that medication is like aspirin - it can usually alleviate suffering on the short term.  I will give as many ‘drug holidays’ as possible in spite of the fact that he will not fit in well in summer camp.  I don’t know what we’ll do with evening sports.  I’m expecting he’ll be worse off in the evening than he would have been without meds.  Doctors say, “well, just give him more meds of course.”  That sounds like a slippery slope.
It also sucks that if I follow my conscience and try not to dose him more than absolutely necessary, then we parents will probably end up with the short end of the stick, and the teachers will get the star pupil they want.
When it comes down to it, the whole ADHD business is a load of hurt and worry, and there’s no dodging it.

Posted by Benine on Mar 20, 2017 at 3:32pm

@Benine you have to do what you feel is right for your child. I will give you something to consider as you head down this medication road - kids feel the impact of ADHD in all aspects of their lives, not just school. I too tried medication vacations early on, but what I found was that for him, struggling at camp or extracurricular activities, even activities within our family was just as stressful as school. It impacts their self esteem the same whether they are struggling at school or at camp and the challenge with social interactions can often be magnified during these activities where there is often less structure than in the classroom. We no longer take med breaks, making his behavior is much more consistent and he’s enjoying activities more than ever. I have friends who struggle with ADHD as adults and they will tell you that they have developed coping mechanisms over time that help but for some, medication helps them cope, stops the dramatic swings in mood and behavior and helps them live less stressful lives. For my son and our family medicating daily has changed all our lives for the better and I am seeing him mature and grow leaps and bounds in a way I don’t feel would be possible without medication being part of his daily life.

Posted by brlk13 on Mar 20, 2017 at 6:42pm

Thanks to all for your wonderful shares and support. I will keep you all posted on this journey and will appreciate advice/feedback

Posted by Frannnie84 on Mar 21, 2017 at 12:33am

I was scared at first too—I think most parents are. Most of the extreme reactions are rare, and suicidal ideation is usually related to SSRI’s and Straterra, not stimulants.

Medication is the most effective treatment for ADHD, since ADHD is a physiological difference in the brain (http://www.additudemag.com/adhdblogs/19/12325.html). A homeschool environment might help for a while, but probably isn’t a long-term solution to treating his ADHD. And there are risks for untreated ADHD too, like addiction, depression, anxiety, etc (http://www.additudemag.com/adhd/article/811.html).

What I found most helpful in considering trying medication, was to learn the facts about it. These articles help with that:
http://www.additudemag.com/adhd/article/1592.html
http://www.additudemag.com/adhd/article/718.html
http://www.additudemag.com/adhd/article/856.html
http://www.additudemag.com/adhd/article/905.html
http://www.additudemag.com/adhd/article/9573.html

Medication changed my son’s life. And the tipping point for us was that (1) we have tried behavior modification alone with little change, and (2) my son was super sad and down about himself all the time (at age 5!). I knew we had to help him succeed right away.

Penny
ADDconnect Moderator, Author & Mentor on Parenting ADHD, Mom to teen w/ ADHD, LDs, and autism

Posted by adhdmomma on Mar 21, 2017 at 1:27pm

My vyvanse copay seems to be too high.. Aderrall is on on my insurance formulary. What do you recommend Adderal or vyvanse for first timers. Thoughts?

Posted by Frannnie84 on Mar 21, 2017 at 10:19pm

While they are both amphetamines, they are different medications. Your child may respond to one better than the other. I suppose if you’ve not tried either, starting by trying Adderall would make sense because if it works that’s great and you don’t have to worry about it. Adderall was bad news for my son but Vyvanse works well for him. I’ve heard the opposite from other parents so it really depends on your child.

Posted by brlk13 on Mar 21, 2017 at 10:31pm

Thx.. Just found out aderral is not covered by my insurance.. Anyone heard about Zenzedi or evekeo

Posted by Frannnie84 on Mar 21, 2017 at 10:50pm

Thanks so much to everyone for all of the replies.  This has given me a lot of great information to think about.  And I am glad to see that no one has posted a horrible story about something crazy happening when they tried medication.  I’m sure it is rare.  We will go into our appointment with an open mind and I truly appreciate all of the advice.  Thank you all.

Posted by Calimom on Mar 23, 2017 at 2:02am

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