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I could use some advice for my son's meds.

RandomNames43 profile image
12 Replies

My eight-year-old son was diagnosed with ADHD about a year and a half ago. I strongly suspected as much for a couple years. He had every symptom.

Anyway, we had him on Ritalin at first. I want to say we started at 5mg, which helped a little, but we moved him up to 10 a couple weeks after if I remember right. And then 20mg maybe six months later.

Like everyone else, we had a hard time finding his medication. I would call 10-20 pharmacies sometimes to get it. Then his insurance stopped covering it and they switched him to Vyvanse.

I want to say equivalent dose on that was 10mg at first. He did that for a few month and we had to bump him up to 15mg, then I think 20mg a month after that. Then 30mg a few months later. And now he's been at 40mg for a few months.

The issue we're having is he seems to build up a tolerance fairly quickly and it loses its effectiveness. He's naturally skinny (my wife and I were both very thin as kids) but he's not gaining weight and he's not eating as much as we'd like. He's been between 49 and 51 pounds for over a year. He also has a hard time getting to sleep. He's usually awake until 9:30 or 10. Sometimes until 11 or later.

We tried Pediasure Grow and Gain shakes for a while. At first they worked well and he put on a couple pounds. But then he started getting severe constipation from them so we stopped.

He's reached the point where his medication isn't working very well again. I'm hesitant to keep bumping him up because it's an appetite suppressant. I'm not sure if a different medication would work better, but I know it'll be a nightmare trying to change. We had to get prior authorizations more times than I can count even for medication his insurance did cover.

I've talked to his pediatrician and he's always a little wishy washy with his answers. I've asked if his dose is normal, high or low and he says we still have room to go up. I'm guessing a lot of people have been in the same situation. Curious to know how others have handled it.

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12 Replies
Onthemove1971 profile image
Onthemove1971

Welcome to the group! We were in the same boat as you and we asked to see a child psycharisitist and that was the best decision we ever made. Medication is complex and your son really needs a specialist that should look at type, dose and timing. Our son spent many years on Ritilin and then we added Guanfacine.

Our son's doctor told us when we started medication it should control 60% of behavior when it is the correct type, correct, dose and correct time.

Our son needed an eduational plan and thearpy to help him.

Within the last 6-8 months we have moved away from stimulants and our son is on Wellbutrin. Which at first was hard waiting for him to get adjusted to, but the medication is mailed to our doorstep and it has been great.

I will also say, we never focused on dose and number.

What worked.. really worked. But we surely knew when it was not working. We went a long time without and increase, then grades started slipping and we increased and it was so much better.

We also "required" our son when he was smaller to drink protein shakes and eat protein with every meal.

Hope this helps, you will know when everything is dialed in.

Know we are always here to support you.

RandomNames43 profile image
RandomNames43 in reply to Onthemove1971

Thanks for the reply. We tried finding a child psychiatrist over the summer with no success. We weren't able to find one that accepted new patients and accepted his insurance. We ended up taking him to a child and family therapist who was very underwhelming.

I quickly figured out I knew more about ADHD than her through my own research. We ended up doing eight sessions because it was covered by insurance and it was our only option.

She did play therapy with him. He enjoyed it because he had someone's complete attention and got to play. I don't think he got much else out of it. Whenever we asked for any feedback, she would only say he's doing well.

Our biggest issue with him is the arguing. I think we had grown so used to it that we didn't even notice. And he became used to talking back with no real consequences. Lately I've drawn a line in the sand and now I just cut him off with "stop arguing" and "stop talking back." This leads to more temper tantrums, but I think trying to reason with him only encourages the arguing.

He's also extremely intelligent. He scored in the 99.9th percentile on his overall giftedness test. Then scored in the 99th percentile or higher on the five specific categories they tested. His teacher was shocked because he had a hard time completing his work in class. She didn't realize it was because he was distracted and bored. She had initially scoffed when I suggested they test him for giftedness, asking "What makes you think he's gifted?" But that's another story.

Anyway, I think a non-stimulant might be the way to go. I really don't want to keep upping his dose on stimulants when he's not eating well. He also gets very irritable around bedtime, groaning and screaming at times.

I'll have to do some research to see what his options are. Then check with his insurance to see what's covered. His pediatrician had mentioned that there are other options in passing, but I don't get a sense that he's completely dialed in on ADHD.

Thanks again for the reply. I'll also have another go at looking for a child psychiatrist.

kdali profile image
kdali

Welcome! We see a child psychiatrist for medications, and stimulants were not an option due to weight.

For the constipation, you could ask if giving a child's dose of magnesium with dinner would be ok. We use Pedia Lax or Garden of Life brand. For sleep, some have great results with melatonin, so I would ask about this also. We use Good Day brand for kids, but it's rarely needed.

RandomNames43 profile image
RandomNames43 in reply to kdali

Thanks. I think our first step will be to look into non-stimulants and see if that helps with the appetite and sleep. I suspect those issues are primarily side effects from his medication.

If that doesn't work, I'll give the shakes another try and have a children's laxative ready if needed.

kdali profile image
kdali in reply to RandomNames43

I hope you get lucky on the first try! There may be threads here that can help you navigate though starting one. Ours is Strattera, and the goal was a 30% reduction in ADHD symptoms. We got 50%, and it's the only thing we have tried so far. Our pediatrician was shocked by the med choice and at the results 🤣

I read your other reply on this thread. Our kiddos are very similar. The latest issue, back talk, is taking a long time for us too 😞Giftedness adds some interesting challenges. I have had little success in searching for support or resources for this combination, except for some tips from play therapy 🤷‍♀️ OT has been helpful in the classroom.

Onthemove1971 profile image
Onthemove1971 in reply to RandomNames43

In my opinion... I can't believe I am saying this. But for our son the stimulant only helps him with decreasing impulsive behavior. The non-stimulant helps with mood, arguing and focus.

We have had great results with the Wellbutrin and we may reduce the non-stimulant.

The ending the argument is key..

So glad you have joined us! Let us know the outcome we are always learning from each other.

Aloysia profile image
Aloysia

When my 14 year old was 13, we discovered by accident that the Daytrana patch worked well for him. His body seemed to metabolize the extended release pills super quickly and it would wear off before school was over. But with the patch it was even throughout the day. I do have to remind him to take it off about an hour before dinner so that it doesn't affect his sleep.

MNmom99 profile image
MNmom99

hi, not sure if you already know of this but there is a dna test that can be done (it’s called genesight) to check which medication may work best for your little one, our son is 8 and went through similar issues with medication and more so the effects of him not growing much because of it, so we decided to try the dna test so we could shortcut through a bunch of medications, he was also on methylphenidate got up to 30 now he is on atomoxetine 10 mg 2x a day and fluoxetine 10 in the am, on school days just to help him focus a bit more he has a 5mg methylphenidate, he also drinks pedisure growth a couple bottles a day he has gained about 5 lbs since being on this dose and grown about an inch it’s been about 3 months and seems to be working for him. These medications really suck in the fact they may work but halt growth, I hope you find something that works for you. Sending hugs and well wishes. Oh and for sleep he has melatonin nightly that seems to help good luck 🙂🙂

MyDogAteMyRitalin profile image
MyDogAteMyRitalin

Hi,

I’m not sure if this would be useful for you, but we made a high value reward system for “good responses” for both our ADHD and neurotypical kid when they were 8-10. The negativity and unhelpfulness was getting out of control. There were staged rewards over a 6 month period and they had to give a certain number of “good responses” in a week or month long period. Big prize was a trip to an indoor water park. It was not cheap, but both kids bought into it and it helped them talk with us more appropriately. I also like rewarding positive behavior rather than constantly correcting them. A reward system with a good prize, combined with medicine, could help.

SherrieB profile image
SherrieB

Hi and welcome,Our stories sound very, very similar. Our son is 7 and is now on 40 mg of methylphenidate. We gradually too increased his dose each time we saw that it was needed. However, I spoke with his doctor, and we are not crazy! It is a thing for your child's body to get use to a medication and learn how to metabolize it faster. So far we have found getting him to eat a little more in the morning is helping. We have an extremely picky eater so what we can get him to eat is usually pb and j, but hey he's eating right. We have also found that giving a break from the medication when ever possible helps. We have spring break coming up this week , he will definitely be off his meds more than he is on to allow his body to kind of reset. We are still working on the talking back thing, so if anyone has any good solutions for that please, please let me know! I hope this helps.

PinkMamabear1990 profile image
PinkMamabear1990

Hello Everyone! My recommendation would be to ensure you have a pediatric psychiatrist. That makes a hug difference vs a general doctor or pediatrician.

My 15yr old daughter has recently been diagnosed with ADHD and started taking 30mg daily of Vyvanse. It has seemed to help quiet her mind, help with extreme moods (she still has alot of mood swings within a day but they are alot milder) and help her feel more positive. She is extremely thin and I am concerned about appetite suppressant but so far, that hasn't been the case. She is still eating. I am not for this suggestion- but I have had other suggest THC/CBD products to help sleep and appetite. I work in the mental health field and have seen it work quite well.

Each to their own :)

I've noticed some ppl mention arguing and behaviours. I would recommend reading Ross Green the Explosive Child. It is a great resource and gives a new lense on how to help eliminate specific problem behaviours.

Thanks for sharing everyone!

BeingMom profile image
BeingMom

We have really found the ADHA Dude program super helpful. We have done several others but his rolls all the other programs/methods into one.

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