Medication trade offs?

[Bowie1211]

My son is 7 and was diagnosed with inattentive ADHD. He struggles in school because of it. At home it seems more like combined presentation because the hyperactivity is constant and there’s a lot of impulsivity as well.

We have had a really hard journey with medication. He was on 1 mg of guanfacine since June then we also did trials of Quillivant, Ritalin, and Adderall. On the last 3 we experienced much bigger emotional reactions, loss of appetite, more dysregulation. Our provider then suggested going up to 2mg of guanfacine which resulted in increasingly scary nightmares and eventually hallucinations which was a horrible thing to watch him go through. So now we’ve stopped medications and are reassessing. I meet with the provider again Tuesday to discuss options.

I’m sure so many can relate but unmedicated trying to manage his adhd is completely fraying the entire fabric of our family. Mornings are so tough. We live in the Midwest where it’s winter now so we can’t get outside as easily to run the energy off. He’s in sports 4 days a week, which is actually already a tough schedule to pull off, so we’re always trying to help him have a physical outlet for his energy. And we do plenty of outside play as well, just not at 6 or 7 am when the temps are single digits. His motor is always on overdrive and without a productive place like sports to put that energy he is so disruptive. He also has eczema and is itching constantly, and I know that’s made worse from his adhd also. I hate how nuts the mornings are and how it seems to set a bad tone for the day.

None of the medications we trialed felt like something we could keep him on because of the side effects. But now that he’s been off of meds for a week, I definitely see they were doing something because the change in his frenetic activity is very much worse.

I know it’s easy to feel like the grass is always greener, but I have quite a few friends who’ve been lucky with meds. The first ones they tried worked and no big side effects. They don’t seem to have to weigh the pros and cons of the drug.

I guess my question is how much do you see the meds as being a trade off - worse sleep or not eating etc in exchange for better attention or more self regulation? I don’t know if I’m looking for a unicorn, but I don’t want to have him suffer in other areas in order to be helped in some way. I want to be hopeful there’s still something out there that will just work for us but it’s been so rocky. I would give anything to help him be more at peace in his body and be able to self regulate. Thanks for any insight.

[Onthemove1971]

Thanks for sharing..Yes, the trials are horriable, but the magic we found was Ritlin and Guanfacine together. The Guanfacine controlled his moods and helped with focus. The Ritalin helped to slow him down, which he could not live without. For us this worked and we also find therapy helps to help him learn what he needs to be doing to help himself be successful.

Our son, like your plays sports at a very high level and can not function without them.

One thing I will say is about 3 years after the trials I asked my son if he remembered the medication trials and he said Nope.. and ran away to play.

Some of us have been there and know what you are going through.

Hope this helps..

Big hugs for your struggles.

[SurvivorFan]

Sorry your going through such a rough time. I also have a 7yr old and from midwest so feel your pain of the freezing cold mornings! We had to trial several meds before we found what works as well. Its not perfect but benefits far outweighs the side effect. My son struggles with appetite a bit but we have established an understanding that if he wants his nintendo switch or I pad time he has to eat what's on his plate. We keep the food simple to what he likes and just enough to get the calories he needs. We sneak in 100 calorie snacks throughout the day and then at 8 when stimulant seems to be gone he is hungry and we let him him eat what he wants.

As far as mornings go I feel your pain. Prior to figuring out a good plan he was really out of control. Loud, impulsive...left everyone on edge and usually with a headache. Since we are on a good med plan it's only about 40 minutes for us so though so I'm grateful for that. We have made a "deal" where I let him eat his breakfast in the living with cartoons on if he sits calmly. If he is wild and loud then cartoons are off and he sits at the kitchen table. It works most of the time.

[PonderingPapa]

Our seven year old is doing well on meds. As another commenter mentioned, he also has lack of appetite during the day and then wants to eat everything around 7:30 PM. We give him vitamins and encourage snacking - yogurt, cheese, sausage. He is underweight but not enough to worry his GP.

We have rain instead of snow where we live. We have him do jumping jacks or pace and count when outside is not an option.

[Momtrying]

I’d say if the loss of appetite isn’t huge, it’s better than them not being able to stop and focus. I was worried at first but my son figured out what times worked for him ti eat and his weight evened out as he grew.

You probably tried different doses of the medication but just in case you didn’t, when we first put our son on adderall it was rough! We started at 15 but lowered the dose to 10 and that helped but he had some intense mood swings until we added an afternoon short acting dose that helped a ton to get us through the evening. It took a while but eventually he evened out and started reacting really well to it all. We’ve upped his dose 5 mg almost ever year as he has grown. Before adderall we tried concerta but he felt sick all the time so I wouldn’t put him through that.

Maybe a non stimulant would be better for your son? My nephew is on strattera bc stimulant meds make his tics worse. His meds do help him to slow down a bit and control his impulses.

It’s so hard! You’re doing a great job by trying to help your son 😊

[Lovemyboy1]

I'm so sorry for all that you are going through. My son is 8 and he's about to trial his NINTH medication. Our story is basically the same as yours. Some of the meds have helped, but the side effects were not tolerable. He had an allergic reaction to one of them that caused intense itching and he's been scratching ever since! (It's been two years!) It traumatized him so much that now he's afraid of anything that could possibly be itchy.

Most recently we ended up at the emergency room because Focalin was making his chest hurt and causing him shortness of breath. I felt so horrible to be the one that administered it to him when my job as his mom is to protect him from harm. We're waiting for a referral to cardiology to make sure it is safe for him to try a different stimulant.

I want so much for him to get the help he needs, but it's feeling hopeless at this point. We don't have too many more options, so I hope something works out soon.

I totally relate to hearing about other families success stories regarding meds, and while I am glad for them, I would also like my child to be able to have that same success.

It's so hard to put our kids through these med trials and watch them suffer terrible side effects. It feels like a science experiment and I don't want to do that to my baby. But the right meds could change his life and help him reach his potential. Who wouldn't want that for their child?

I am sharing all of this to reassure you that others are experiencing some of the same things as you and your family. I hope and pray that we'll find "the one" soon. Wishing you all the best!

[LlamaMomma]

My 9 year old is doing well on Concerta. There were headaches at first and loss of appetite, but he’s adjusted and no longer gets the headaches. Per his doctor’s suggestion, we don’t give it to him on weekend, which helps with his appetite on those days .

[Slowxxmotion]

what I usually ask myself is “are the side affects of this drug worse than the consequences from the impulsive decisions he would make if he weren’t on medication?” We tried guanfacine and he was in absolutely gut wrenching pain to where he couldn’t even move so that was stopped immediately. But then we tried quillivent and yes he still has some issues with it (lack of appetite, Tummy pains, occasional dramatic mood swings) but it’s a trade off we allow because otherwise he’d be putting himself in far worse and dangerous situations if he weren’t on any meds. As he had definitely done and sometimes still does when we don’t give him meds on weekends or the summer break.

[AmandaZachary]

You can give him gum even if not suooise to they must accommodate in school cause back tooth helps them focus and a ball to set on there is so many ways get a 504 plan from doctor use it to your advantage I clouding work ahead of time having time to explore being pulled out for testing for no distraction in room by others ajd allowed to explore the room before school starts and words for next year to help him

[EJ_C]

Hi all, I'm not a parent. Just someone who is now in his 20s and has grown up in the world of ADHD.

Most responses here, would share my opinion and looking back, I can't really remember those original challenges.

ADHD doesn't go away even with medication, it is a journey and you develop coping strategies.

Like your children, I was very sporty. Which I feel helped me focus on something.

Back to the question, though when I was older I took myself of medication for a short while when I was learning myself. I'm thankful for my parents for putting me on that journey.

Medication isnt right for everyone. Sometimes coaches or a different learning style can also help (teacher me coming out)

But what I remember as a child, is it allowed me to breath ... If you get me? It still does now.

Sometimes, you felt some emotions when the medication wore off but working with timings you can plan things to help that.

I still don't have a huge appetite when I take my concerta. But I take it with my breakfast and some days when I'm not hungry because of it, I'll ensure I snack on healthy things throughout the day.

And even now, I have minor mood swings, again particularly when my mind hasn't been engaged - what ive done since a child and still do to this day, is head to my calm place (I remember my dad not using is as a punishment space) which is my room. I've got my comfiter and a light, which shines colours and stars onto my roof. Put some music on and work things out in my mind.

It doesn't stop you from being energetic, loosing things or being messy. But it gives you some space in your mind. It gives you a chance to think before you do something stupid. But a lot of the challenges are still there. I spoke in another post about learning right from wrong etc.