5yo starting Vyvanse, side effects, worried mom

[Augurey]

Hello,

I have a 5 year old son whom has been diagnosed with ADHD, combined type. He is super bright, outgoing, social and funny, but has struggled with impulsivity and hyperactivity since he was three. For years my husband and I have been struggling to help our son and his preschool. The school had him switch preschool classrooms earlier this year to try and give him a fresh start with a different teacher, but 7 months later and we just had to have the conversation that if his impulsivity does not improve, they may need to ask him to leave the school. We love him so much and it is so painful that we have not been successful in helping him so far (parent training, counseling, OT, every type of reward system, discipline etc for two years). We have great structure at home, and are used to providing all of the prompts he needs to get through the day and have good behavior, but we have not been able to have this translate to what he can do at school.

Heartbroken, and feeling like we have failed him, our pediatrician said we should do a trial of stimulant medication at this point, even though he is only 5. She prescribed him 20mg Vyvanse, and we gave him the first dose yesterday morning.

There was noticeable effect during the day (followed directions after 1 prompt, maintained long conversations), but the immediate side effects have me anxious and feeling guilty. He did not want to play as much, and was content to sit and talk rather than run around with his younger brother. He did not smile as much or laugh nearly at all. He had two points where he burst into tears where I think he normally would have gotten argumentative/defiant. He only had yogurt at lunch, and breadsticks at dinner. He has always been a great sleeper, but last night he could not fall asleep at all. He was still awake at 11:30pm and I gave up and went to sleep in his room. Every time I looked over at him he was awake asking if it was time to get up yet. I don't think he could have slept more than 3-4 hours total last night.

I have a scheduled call with his pediatrician at this end of this week to check in, but I am already so worried. Is there anyone that has experienced this with their child or themselves? Is this just part of adjusting to the stimulant or is this already a sign that this is not a good fit for him?

Thank you all- hearing from others that have actually been through this is invaluable.

[STEM_Dad]

Welcome to the community.

In my family, I'm the only one with an ADHD diagnosis (so far). My kids seem to have milder ADHD symptoms, so they have yet to be referred for an assessment. But I've researched a lot about it, because of my concerns that my kids probably have ADHD, too.

I do know that it can take some time for the body to adjust to a new medication or new dosage of a medication. The fact that your son seemed to calm down so much seems positive, but I'll agree that from a parent's perspective your son's loss of appetite, difficulty falling asleep, and crying is frustration must be hard to bear.

Definitely keep notes on what you observe, what your son says he feels, and feedback from other adults, such as the preschool teachers. Definitely discuss any concerns with your son's pediatrician.

Acknowledge for yourself that you are doing the best that you can do.

~~~~~

The ADHD medication guidelines for Vyvanse (and I believe any other ADHD medication approved for treatment of children) is for children age 6 and up. (But it's not unheard of for a 5 year old to be prescribed ADHD medication.)

I haven't learned why age 6 is the recommended earliest age for ADHD medication, but I do know that research about early development of a child's brain will go through the most rapid changes from birth through age 5.

If there is any smaller dosage that your son's pediatrician can prescribe, then you could talk with the doctor about it. Often, the starting dosage will be small, and the dosage increased gradually (such as over several days or weeks). This method is gradually increasing the dosage to reach the optimal effectiveness for the patient is called 'titration'.

~~~~~

Specifically because of the sleep issue, consider giving your son his medication as early as possible. (Discuss this with his doctor, but I know that there are many people who take ADHD stimulant medications even before getting out of bed, either because it lasts so long, or because they need the help it provides as early as possible.)

[Mamamichl in reply to STEM_Dad]

Although not backed with any research, I’m guessing that 6 was the recommended age because kids start kindergarten at 5 and 1st grade at 6 and that’s when sitting and academics becomes “more important” and rigorous to society. it also takes 6 months to get a neuropsychologist exam to have a deeper test for this condition. Again, not backed by research, but definitely something I’ve noticed when working all around that age group. It just becomes more apparent to have adhd at that age when kids are expected to sit and have attention span.

[TinyDinosaurs]

I was just reading an article about ADHD and something in it rang a bell with what you're describing. Check out "The Medicated Secretary" on the 2nd page of this article. It doesn't exactly explain a solution, but sort of an approach, and hopefully it might be meaningful to you? import.cdn.thinkific.com/11...

[Aloysia]

Please start a symptom log. You will need this every day until you feel he is on the right medication AND dose. After that, you will need to bring it out at least every 3 months in order to check in with him. It is common for a kid to need a higher dose as they grow. It might be 5 years before that happens or it could be 1 year.

Come up with a list of questions that make sense for your kid. At first, you will ask these questions at least 3 times a day (before school - like soon after he wakes up, after school, and before bedtime). Things like:

- how does your brain feel?

- how hungry are you/what did you eat?

- do you feel sad/depressed?

- do you have a headache/stomach ache?

- could you feel a difference today in your behavior? How did that make you feel?

- how did you sleep/how tired are you?

-add whatever other questions you feel are important...

At this age, maybe print out one of the smiley face scales from 1-10 so he can point at how he felt. Then when he's older he can give you a number on the scale instead.

Also remember that stimulant medication leaves their system in like 4-8 hrs or less (depending on variety). So if you want to see how your kid is at school on the meds, just give it to him on Saturday. Then don't give it to him on Sunday to see the difference.

Also many kids do not take their meds on the weekends so that they can eat more those days. Find things he likes to eat and let him eat them during the week. If he likes smoothies, sneak in some protein powder, etc.

If he ever feels sad or depressed (unrelated to being treated poorly or bullied - in other words with no reason for it), then immediately take him off the meds. Report it to the Dr and ask to try something different.

Best wishes!

[Mamamichl]

I know people on too high of a dose seem “zombiefied “. This sounds like your son may be on too high of a dose. Having trouble eating is a normal side effect for most stimulants, unfortunately. Some side effects, like sleeping issues may go away after a couple weeks or so, but some do not. Sometimes sleeping is an issue that shows the stimulant is still in the system. It helps to take it as early as possible in the day. My step/bonus kid had similar experience in preschool and early elementary. We got them diagnosed and bio mom refused meds. The kiddo needed to be in special education until 5th grade but is now thriving in 9th. You didn’t fail your kid. It’s just a process to figure out how to adjust accordingly.

The good news is, within 48 hours the med is totally out of the system so you don’t have to worry about too many long term side effects (only tics if they get stressed out too much in some rare cases like mine). Also, there is a gene site test that doctor can do, but not all insurance covers it and it can be $2k or so. I’m hoping my insurance covers it but not sure. I’ve tried meds and feel like I’m having to persuade my doc to try upping my meds because I don’t notice any changes.

[ADHD_DAD]

Hi. We had mood side effects with Vyvanse and switched to Concerta which has worked great. The sleep issues do get better, but strict bedtime and bedtime routine is needed. If all else fails, melatonin helps with no side effects.

As for loss of appetite, that's normal and I assure you it gets better (with a boy) in the teen years. Nothing can compete with a teenage boy's appetite!

When my son was young, we gave him ice-cream nearly daily as a "reward" for doing his best at school or whatever.** Really the point was to add the calories. Ice-cream is not unhealthy, just high calorie, which is why most adults should not eat it everyday. These kids have enough struggles and if their childhood includes daily ice-cream, not bad, right? We also found that appetite was best in he morning before the needs kick in. We would supplement breakfast with little Jiff peanut butter bowls (the ones with no additives, just peanuts). Again, healthy, but high calorie (and high protein).

**Our standard was always to "do your best" as opposed to some result, since a hallmark of ADHD is inconsistent results despite consistent effort. What i told my son (and believe) is that most people do not do their best. If your standard for yourself is to "do your best," you will not only be successful, but extraordinary! (In my son's case, it has proven true).

Good luck to you. Remember, your son is in the excellent company of Einstein, Thomas Edison, DaVinci, Ben Franklin, Simone Biles, Michael Phelps and many, many extraordinary others!!

[Knitting20projects]

I’m wondering if he could try an immediate release stimulant instead, at a lower dose, such as generic Ritalin at 2.5 mg 2 times daily. In a young kid at age 5 I would probably try an immediate release medication first because it has a quick onset and shorter duration of action—1 dose lasts about 5-6 hours. He could even just try 1 dose of 2.5 mg in the morning at first because it would have worn off long before bedtime.

[MomofADHDBoy6]

Hello. I also have a 5 year old son who has been diagnosed with severe ADHD. For us, our Dr prescribed short acting methylphenidate (it lasts 4 hours), so he takes one in the morning after breakfast and one after lunch. I have noticed even on this that during the day after breakfast and until dinner his appetite is definitely decreased, so after dinner we let him snack to make up the calorie difference. I can relate on the side effects and the worry before finding the right thing for your kiddo! The main thing our Dr. said was that the medicine should make it so your child is still the same kid, but with more focus and ability not to act impulsively. We started on the smallest dose, but it wasn't enough. Then we went to the next highest and he had too many side effects it was so sad. He got withdrawn and seemed sad during the day. So we found a happy medium in between those doses and then gradually increased him to the right dose where he seems to have minimal side effects. One thing though is I have noticed there is a transition period where the medication wears off that he is more grumpy than usual and that wears off after about 30 minutes in the early evening. I hope that you find the right medication and dose without too much of a trial period! That part is the worst. But I will say after that trial period, once the right dose and medication is found is can be such a blessing! My son had an entire year in preschool and couldn't learn any of his letters, even with our help. Now this year, in Kindergarten he is reading and getting 100% on his spelling tests! I attribute that to taking the step of getting him on meds! You are doing a great job and are helping early in your child's life, and that will make all the difference in learning and school!

[Pedrof1976]

HiYou could always ask if he can have a smaller dose as it sounds like it's probably dose related. If they gave him 10mgs he mat get the reduced impulsive behaviour, but not the zombie effect. Or ask to try methylphenidate immediate release which would give him a short burst of 4 hours effects