Has anyone experienced these issues? - CHADD's ADHD Pare...

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Has anyone experienced these issues?

Bluestingray profile image
10 Replies

We felt like we have found a good fit with vivance alongside intuniv, however after about a month on this dose, there are some behaviour changes that are concerning. Mostly in the last couple of days with school.

My first concern is:

Is it possible for children to develop a tolerance to their stimulant medication?

The other thing that I’m wondering that could be going on is that we were giving him one 40mg vivance with two 10mgs to equal 60 mg per morning and we just switched over to a 60 ml tab. This is when we started seeing some issues at school and excess energy. The pharmacist said there shouldn’t be any differences in the release and dose however it seems to be too much of a coincidence to not be. He seems to be having some jitters and nervousness and some hyperactivity which can also be a sign of too high a dose correct?

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Bluestingray profile image
Bluestingray
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10 Replies
Onthemove1971 profile image
Onthemove1971

It is exciting that you are seeing good results with medication. I will say I feel like their bodies are very sensitive to what they take and if I were in your shoes I would not even question it, but ask to go back to the 2 pills.

If after he takes his medication ( within the window of it working -3-4 hours) he is still showing signs of being hyper, jitters and nervousness then it is not the correct type, dose or timing.

If I understand you correctly he was taking 3 short acting pills and you changed to an extended release, is that correct? This took me a while to understand- any extended release will dispense 3 doses over a long period of time. So if it was 30mg- it will do 10 right away, another 10mg a few hours later then toward the end 10mg more.

Our son takes an extended release in the AM, then 1 extended in the afternoon. I feel like his AM medication works better for him.

So my advice is go back to how it was with the 2 pills.

Of course it could also be something happening at school which he is not talking about.

It sounds like you are working with a psychiatrist? They are very use to deal with small changes. The truth is if you go back to the 2 pills as all gets better you will know what works best for his body. If not then the issue is still with the school.

For us to was like magic as soon as everything was dialed in correctly.

Hope this advice helps in some way.

Bluestingray profile image
Bluestingray in reply to Onthemove1971

Thank you so much for your response. No, I think I was a little confusing on that message.. he didn’t switch from short activity to long, it was long acting all along. So 40 of the long acting and two tens all at the same time in the morning (the reason we started it like this is so that I could fine tune his dose through covid by adding 10mg at a time as we needed to get him to the right dose before school began)

Then to make it simpler with the prescription refill we switched to one 60 long acting so he only takes one pill.

We don’t have a psychiatrist or psychologist for him, just a paediatrician who specializes in ADHD. I’ve asked about psychiatrists but it doesn’t seem like a viable option here for some reason I get resistance from the doctors... so I feel it’s more in my hands to figure it all out.

I think you are right about switching back though and their bodies being sensitive. I might give it another day or two, talk to his doctor and see if it has something to do with school, diet etc. Before switching. I’m also wondering if there is some anxiety going on contributing to issues and whether that is coming from a side effect of the medication or if it is just Something that he’s dealing with right now. 🤷‍♀️

anirush profile image
anirush

We have had trouble with one dose working ok and a higher dose causing havoc. You did not say how old your child was but that is a high dose on Vyvance. I have a 14 year old on Straterra and he is on 24mg . 40mg made him too angry.

Read2Me profile image
Read2Me in reply to anirush

Our family is still trying to figure out dosages for medications. However, our 10 year old daughter is successfully taking 60 mg of Vyvance. Her body tolerated it well and it was like a light switch when she moved to the higher dose a month ago. Before on the lower dose, she was extra drama and flitting around activities with very little attention. On 60mg, she can slow down, less drama, school work has improved, and I have my daughter back. My son is a different matter. He’s on Straterra and starts 70mg today, up from 40mg. He is also 10 (they’re twins). He went into rages on Vyvance, we’re still working to find the right fit of nonstimulant medication. What I’m saying here, all of our bodies are different and the way we metabolize medications vary. I wouldn’t be comfortable with these dosages with a doctor who doesn’t specialize in ADHD and I have no clue where we’ll go after my daughter grows out of this dose of Vyvance. If someone has a higher dosage of med and they are having the desired results with few/no side effects, I’m supportive of it. I’m still hopeful we can find something to work for my son.

Onthemove1971 profile image
Onthemove1971 in reply to Read2Me

Thank you so much for sharing your experience. I love the way you say " a light switch turned on". I know that parents who try one medication and have a bad experience are loosing out on the amazing benefits that medication can bring to children like ours.

When we first saw our Pediatrician, he gave us an out of date medication with to low of a dose ( this is understandable, he doesn't understand each medication and know what is best for our child). When I changed to a Psychiatrist, I truly gained a professional who can analyze type, dose and timing to best suit our son. When things aren't just right the Psychiatrist looks at how to change something. We recently changed his afternoon booster dose to 2 hours earlier and made it longer acting. He was on 2 short acting before.

We all need a team player and I know our psychiatrist is the only one to help us.

Good luck with your medication journey, let us know if when you went back to 2 pills if that was the magic he needed.

Bluestingray profile image
Bluestingray in reply to Read2Me

Hello, yes it is worrisome looking at those high doses and wondering what happens if they need more. I also wonder for the future. I did read something that made me feel better the other day. It was talking about how finicky these doses can be and some kids actually do need less than the lower dose or more than a high dose than is fda approved and it strictly has to do with the amount of chemicals their brains use up and what amount helps so wether that dose is high or low, once you find that amount you should be ok for extended periods. I hope the article was accurate but it has got me re-evaluating how well this dose and drug is working.

I’m wondering if you have looked into using intuniv as adjunct therapy for your son? I know for us we were seeing similar results with the stimulants making him angry the higher we went and once we added the intuniv it was a game changer. It just felt like we were walking on egg shells before with him and the intuniv helped him cope emotionally.

That being said we definitely are still fine tuning the vivance but it still feels like it’s been a game changer.

I do have a question for you though...

when you say for your daughter it was like a light switch, did the stimulant literally take away all the symptoms? I guess what I’m trying to figure out is, I feel like our dose has been life changing as well however I think he is still struggling a bit socially at school and with impulsivity etc. but I’m wondering if it has more to do with just re-learning social stuff that maybe fell through the cracks when he was dis regulated for so long and there will always be some issues because the drug can’t make him completely neurologically “normal” or in the flip side is it maybe not the right fit?!

So confusing and I feel I could drive myself mad overthinking it!

Bluestingray profile image
Bluestingray in reply to anirush

For sure, however we didn’t actually change the dose.. just the pill format...

He is 7 years old, it is a high dose, however his symptoms are very severe and the lower doses weren’t helping with the symptoms of ADHD enough. We were finding success for more than a full month on the 60 so I think it still might be the right dose. We also had some issues with other stimulants making him angry like your 14 year old as we went up in dose. We have switched from those drugs as it was definitely a bad side effect. He is also on intuniv right now to help

With the emotional regulation which probably helps us be able to use a higher dose of stimulant without getting that edgy anger we had previously seen..

Onthemove1971 profile image
Onthemove1971 in reply to Bluestingray

We had the same experience, what a difference the higher dose made and we have not needed to increase it in over 4 years. We are all good.

Thanks for the update! Big hug for all your worries and struggles.

Bluestingray profile image
Bluestingray

Just an update, I spoke to his teacher who said his day was better yesterday again. He was a bit sensory (loud sounds were bothering him a bit) which has happened when we switched doses which is weird because we haven’t! I didn’t switch back to the different pill format (yet) but a call to the Pediatrician and a close eye on him over the next couple of days is warranted. (Halloween might throw us for a loop though!!)

ADHD_DAD profile image
ADHD_DAD in reply to Bluestingray

Hi. My son switched to vivanse for a short period of time and began to be short tempered and while he never did anything violent, he would describe violent thoughts, all of which is very out of character for him. We switched to Concerta and the issue resolved. Vivanse was bit better for focus, but Concerta worked too without this undesirable side effect. Always a struggle finding the right balance as you know. Good luck.

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