November 10, 2017 at 11:59 am #67897
Hi. Have 14 yr old son with formal diagnosis of ADHD. Avoided medication until the 3rd grade. After much trial and error, Vyvanse seemed to help him focus the most. However, not without side effects. In addition to the fast heart rate, sleep issues, etc., he lost a great deal of weight (as the package insert states the med is used for binge eating disorders). He was in the 5th percentile of weight. We became concerned about his growth when his peers gained quite height and weight in comparison, when I read in package insert that children need to be taken off “from time to time” so that the medication doesn’t stunt their growth. Since the manufacturer refused to answer for me just how long he needs to be taken off, we took him off for good at the start of this past summer. So happy to see his weight gain.
Took him some time to come off it. He started the new school year and although very smart, grades slipped. Had his pediatrician swab him for metabolic reaction to meds and Vyvanse and Focalin are about all he can handle. Put him on 10mg generic focalin and it helps a little, but not enough. After 30 days, increased to 20mg and it made him anxious and stressed. Put him back on 10 mg.
Based on the way I look back at his behavior now and when on Vyvanse, clearly the Vyvanse worked better…he could focus longer, even behaved more like his neurotypical peers, and it lasted longer. However, I am confident it stunted his growth and it was a constant battle to get him to eat. He is now pulling D’s and F’s when he was on the honor roll with Vyvanse. He starts with a tutor in a week since my husband and I are tired of the fighting to get him to study and put any effort into school. Currently looking for an adhd coach as well.
Any suggestions are greatly appreciated. Thank you.
November 10, 2017 at 10:27 pm #67917atldbirdzParticipant
My son is on Vyvanse too. He has switched around butVVyvanse seems to help the most although he still “has no homework ” forgets notes etc. At night he goes wild at times talks inappropriately but then clonidine.01 reels him in. I’m woeried about the weight gain too he has sensory processing disorder WITH severe oral aversion. He has grown a few inches recently in spite of the meds. He just hit puberty so I have to work (nornally I have it too and so many physical issues etc but back to him).,im afraid to leave hin home or take him out without it. A med break would be awesome he needs to carch weight height up. He won’t eat traditionally healthy not even junk foods of cetyain consistency, cant watch others eat fruit or he dry heaves wont eat his favorite pizza if he sees it. He hates anything cold ice ice cream but pudding most cake. any help forbme and caring parent above is needed. ps concerta and strattera and adderall all have that asb”side effect “. I give aduly vitamins since he gatws chewables and gummies. had one Neuro recommend I was skeptical about kids getting too much vitamin is more dangerous another pharmacist I trust aasured me he would pee out what he doesnt need. Hope hes right. I skip it some or cut in half at times. um adhd not the most consistent im too busy being sure he gets all his correct meds then i get mine. You are not ALONE. maybe encouragement? or someone can help us both?
November 12, 2017 at 2:44 pm #67943
Thank you so much for your reply. I am starting to believe that a combination of meds may be more successful for my son. I found a pediatrician who specializes in ADHD, so I am making an appointment to meet with him…our current ped just doesn’t know. I need supernanny or an adhd coach to help with the rest so that my son has consistent structure, etc. And to tell me how to respond when he tries to manipulate a situation in his favor. You’d think a parent would get better at this after 14 years, but not so. Thank you for your help.
November 10, 2017 at 10:31 pm #67918atldbirdzParticipant
ps keep losing part of the page on my phone sorry for all the errors. hope most understand it 😉
November 12, 2017 at 2:51 pm #67944
Also, maybe having your ped check his levels of different minerals. I had my son’s vitamin D and iron levels, for example, checked years ago and was surprised when both were low. I put my son on fish oil (nordic naturals DHA) years ago and I saw improvement. B vitamins, Fish oil, Zinc, magnesium, iron, and D are very important for their mental health with direction from your doctor on dosing and management. My son still likes to take baths and I put a cup of epsom salts in it…I notice if I run out for a few days, he starts to get on edge. Anyway, hope this helps.
November 12, 2017 at 11:54 am #67940sonylisaParticipant
I’ve got a 11 year old son with ADHD w/anxiety and a some
He started taking meds when he was 6. First it was concerta which made him a bit aggressive. Then adderall. He has been on adderall ever since he goes to pediatrician every 3 months for med. check and growth and height check. It seems that his behavior and school things have gotten worse when he turned 11 and started 5th grade. We tried something call Adzenys and then vyvanse and then intutiv and we didn’t see any changes. So went back to adderall w/clontidine at night and every week it slowly increased but still never do anything. He did go to a psychologist that did extensive testing which took 4 visits. Outcome was obviously ADHD but with anxiety and a bit of oppositional defiant disorder. Oh yeah before testing sons 2 teachers, husband, and me had to fill out paperwork. He advised a SSRI and therapy. That was back in December 2016. But I just couldn’t do it. But after trying all the other things that didn’t work for him I eventually told the pediatrician I would try it. So she started at lowest dose and gav it 3 weeks. I started to see a pinch of change but not much. She uped it up to 50mg and we go back in 4 weeks to see how all is going. He is on the 2nd week of 50mg and I have seen a big improvement I can’t hardly believe it. But I really don’t like him being on antidepressant at age 11. But he seems happier, and not so mad when you tell him to do something and much better at school.
November 12, 2017 at 2:55 pm #67945
Hi, sonylisa, thank you for your reply. Yes, does seem like such a trial and error, doesn’t it. Must be a great feeling to see your son’s behavior improve. Sounds like the right combination, hope that works out well. I am seeing that I need to consider a combination of medication for my son, and I found a ped who specializes in ADHD. So, he will be much better at understanding the right combination of meds for my son than our current ped. Thanks again for your message.
November 13, 2017 at 9:16 am #67966Penny WilliamsKeymaster
There are things you can do to address the appetite loss side effect so that he can take an ADHD medication that is otherwise very helpful.
1. Let him eat when he’s hungry, and as much as he wants. Offer calorie-dense foods with lots of protein and healthy fats. We did protein shakes for breakfast for several years, with full fat milk, ice cream, peanut butter, protein powder and bananas.
2. Cyproheptadine/Periactin is an old allergy medicine that is very commonly prescribed to kids taking ADHD medication to stimulate the appetite. My son took it for a year and gained 12-15 pounds, when he hadn’t gained anything in at least a year. It’s not used as an allergy medication anymore, because patients gained weight on it.
3. Vyvanse can also be titrated to a smaller dose in water.
Seeing a specialist is a good idea. Pediatricians just don’t have the expertise that comes from frequent experience treating ADHD.
ADDitude Community Moderator, Author & Mentor on Parenting ADHD, Mom to teen w/ ADHD, LDs, and autism
November 13, 2017 at 12:59 pm #67993
Thank you, ADHDMomma. Yes, I had heard of the allergy med to help stimualte appetite (read on the net) only AFTER I had taken him off the med. I had complained to his ped so often about his weight loss, looking for options, and I was surprised this wasn’t brought up. But, like you said, they aren’t experts in medication nuances like a psychiatrist would be.
On the calorie dense foods, well, I’ve tried it all. He has sensory issues, especially with taste and texture. Getting him to eat healthy food and healthy fats has been an on-going battle since I introduced solid foods to him at 6 mos old. I have made countless smoothies for him in the past (only for him to gag on it, take 30 minutes to drink it, then throw it up) and using different ingredients. I let him have milkshakes anytime he wants, etc, etc. I even took him to a health food store to let him try different kinds and flavors of weight gainer shakes. He would only drink 1 a day, which helped maintain weight instead of gain. I buy Nat valley Organic Fuel and he will usually drink one after sports. I could go on and on, but you get the picture.
Anyway, the heart palps, weight loss, and the possibility that Vyvanse has stunted his growth gives me great pause. I am meeting with a specialist this week and he seems to have some ideas on some medication combos that may be helpful.
Thank you for your post, I will continue to read up on the subject, thank you!
November 13, 2018 at 4:20 pm #103729ReddotParticipant
Not sure how active this thread is, but I did want to talk about my ADHD history coming from a 18 year old. I have been on and off ADHD meds for probably 1-12 years now. I started off with concerta as a kid in grade school, and it worked at the time, by the time I was in middle school I was trying to ween off of ADHD meds and did for a while, but my grades where bad so I started taking 15mg adderall xr I believe and it worked fine but I would always get glittery or feel off. So moved onto vyvance by the time high school rolled around. Vyvance is great for weight loss for sure, but all these amphetamines can easily be addictive especially when you are taking them daily and you don’t notice, you don’t realise how hard it gets until you think you don’t need it anymore and you can just stop taking it, nope. Took e probably 3 months to get off of vyvance without feeling like you cant think without it. Glad I am off of amphetamines, and think children shouldn’t be around them unless it is just impossible to concentrate, it is just takes a little more self discipline and some practice to keep focused, Just thought someone would find this helpful. Mainly just hearing from someone with ADHD med experience, it is scary when you come off of vyvance or adderall because you feel like you don’t need anymore it but come to realise it is harder than you think because your brain is so used to that morning “boost”. Stay safe and keep happy happy yall.
December 9, 2018 at 12:25 pm #105138autismadhdmamaParticipant
My son has been on Focalin XR 5 mg for about 2 years now. It has been up and down but mostly has really helped. It seems like the Focalin gets him right to the end of the school day. Unfortunately, homework can be a struggle but he is only in 4th grade and doesn’t have to do more than one page per night usually. The amount he is on does not make him “perfect” by any means. He is still very high energy and the class clown. But the out of control behaviors have toned down considerably and his teachers say that once he decides to get started on his work, he focuses very well. We also walk the half mile to school and back every day (even in cold temps) and he spends 30 minutes on the playground before school. I also have him doing some sort of physical activity after school 2-3 times during the week and both days on the weekend, which I am absolutely convinced helps. He also sees a therapist 1x per month and a developmental pediatrician (who also treats my son with autism) once every three months. His 504(a) plan provides for some accomodations as well as social work every week.
At first he had some difficulty with sleeping, mood swings, etc. Also at first, we were giving him “breaks” on the weekends, which I have stopped because I was noticing it was making Mondays more difficult. Now things are pretty smooth and he sleeps pretty well. I tell everyone that the number 1 reason I am in favor of medication is because it helped him stop getting in trouble all the time at school; that was taking a toll on his self-esteem, which to me is the most important thing to protect, way more important to me than grades. But the grades have improved as well.
We are still taking breaks in the summer and on vacations because the silly behavior and lack of focus is easier to deal with for everyone then.
Anyway, it is a multidisciplinary plan that we use, including medication and while of course far from perfect, we are seeing lots of improvements. And he is not a zombie. Side note, my stepson was diagnosed with adhd when he was about 12 and was on an extended form of ritalin and adderall for several years. He was kind of a bad student but got to high school and excelled in school and extracurriculars. Now he is a senior in college (with a really cool job already lined up) and told me that since he has been in college he only takes medicine during finals and expects to fully stop after graduation. So, I am hopeful that my 4th grader will also be able to wean from the medicine eventually.
December 9, 2018 at 2:41 pm #105141garvinjenParticipant
So let me ask you a question – if ADHD medication works well for the ADHD diagnosed kids (including college age kid) you’re mentioning here, why exactly would you plan/hope for them to one day quit taking the medication?
Would you be thinking the same way about a diabetic and how people feel about their insulin? I mean why do people (who for the most part are totally ignorant to ADHD and how effective the stimulant medication is for those of us that use it) that have an uneducated opinion about the medication and diagnosis for that medication matter so much ? I mean you are posting in an environment where most people understand ADHD and are advocates for treating it in the way most beneficial to the patient.
Would you hope for anyone wearing glassed or contacts to one day not wear them? They are not
necessary for maintaining life, are a lot of timed made fun of – glasses are however very helpful and make life easier for those that use them, why not change your thinking about ADHD medication and promote wellbeing of the patient instead of succumbing to social ignorance and judgement.
One last thought, 2 years is a long time for a growing child to be on the same dosage of medication. The efficacy most likely has diminished as your kiddos tolerance builds up and his body mass increases. You could ask about modifying the dosage and/or medication. Focalin xr is like giving 2.5 mg IR immediately then another 2.5mg about 3-4 hours later = 5mg Example 5mg xr m-f with no weekends, then 5mg xr daily, then switch either to Focalin 10mg xr with 5mg IR prn right after school or Concerta XR 18mg (like giving 3 doses instead of 2 with Focalin)
NOTE: Above drug/dosage suggestions are not provided as medical advice instead they are just an example of how ADHD medications can be modified for long term use. I am not a Doctor and my opinions are based solely on my personal experience, knowledge as well as my professional (RN) knowledge/experience.
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