Is my son on the wrong meds?

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    • #135650
      Mazz 72

      My son is 9 years old. He has inattentive ADHD. He was on Concerta last year for 7 months. His focus never improved, he lost 10 lbs, and did not grow (in height) at all. We tried different dosages. And probably waited too long to realize it was time to stop. He had no energy and was very introverted. Not like himself. For the next 9 months he was off meds and gained back the weight, grew, was happy, and full of energy. He started grade 3 and he was again not focussing. Totally not engaged in learning or doing school work. Refused to finish homework assignments.

      I thought it would be good to try another med. This time I would not wait so long to pull the plug if it wasn’t working. He is on Vyvanse now. Stared on 10 mg now is on 20mg. Once he started on the higher dosage all the teachers noticed improvements. He finishes his work at school, he’s focussing for the first time and more alert.

      However, he doesn’t eat lunch, he lost his appetite for most meals. He is dropping weight, he’s pale, moody, he seems unhappy most of the time. I talked to his teachers and his pediatrician. The teachers say it’s working, the pediatrician said to give it time. He may get his appetite back, it takes time for the meds to work and the side effects to balance. (it’s been 1.5 months now)

      But how much time? Is he even on the right medication? Concerta didn’t work. Vyvanse – I don’t know. My husband wants him OFF the meds. I’m fighting to keep him on. It’s tearing us apart. I don’t know what to do. I just want him to do well in school. I have ADHD as well but wasn’t diagnosed as a child. I spent my whole academic life with low self-esteem and thought I was stupid. I don’t want that for my son. He is so smart and fun. But is it worth it to be on meds for him to excel in being smart and lose his fun and happy side?

      Need help! Please advise.

      Thank you!

      ~ Mom on Edge!

    • #135662
      Penny Williams

      The right medication and dosage will let your child’s personality shine through. If they are dulled, it’s the wrong medication or too high a dose.

      As for the appetite issue, my son took Cyproheptadine with his stimulant for a couple years and gained normally. It’s a common medication to be prescribed with stimulants just for this reason. It’s an old allergy medicine that really isn’t used for that any more because it makes people gain weight.

      Work on giving him calorie-dense foods when he is hungry, and let him eat when he’s hungry, even if it’s not meal time.

      What to Do When Your Child Never Feels Like Eating

      What to Do When ADHD Meds Ruin Your Child’s Appetite

      ADDitude Community Moderator, Parenting ADHD Trainer & Author, Mom to teen w/ ADHD, LDs, and autism

      • #135707
        Mazz 72

        Thank you so much for your point of view and the information about Cyproheptadine. I will ask our pediatrician about it. I’m also trying to find a doctor in our area who has more knowledge about the medications and combined therapy.

        It’s very helpful to hear what other parents have experienced since I don’t know what to look for or how to weigh the pro’s and con’s of the medications. While the teachers say it’s working, the doctor says it will balance out in time, and we as parents are wondering if we’re causing more harm than good for our son.

        Any advice or knowing other’s experience with this is an immense help.

      • #136402

        It sounds like you need a new doctor who has more knowledge of ADHD meds!

        As Penny said, the right med at the right dose will control the symptoms without dulling his personality, but finding that medication can be difficult if your son is one of the minority who don’t do well on Methylphenidate or similar meds. Unfortunately, finding the right med can be like playing darts in the dark – you just keep trying until you happen to hit on the right one! But it sounds like stimulant-based meds (methylphenidate, Adderall, Vyvanse) may not be a good option – there are other classes of medication that can help manage ADHD symptoms.

        As for the lack of hunger – my son started taking Ritalin when he was 5, so we have dealt with poor appetite pretty much his whole life. When he was about your son’s age, I explained that his medicine made his brain THINK he wasn’t hungry, but his body needed food. This meant that he had to eat his lunch, even if he didn’t feel hungry. I packed his lunch with small portions of food – 1/2 sandwich, a piece of fruit, a go-gurt, string cheese, etc – and told him that he had to eat 2 of the things in his lunchbox. It took a little while, but eventually he did get in the habit of eating on a schedule that still keeps today at nearly 30. It also helped to make sure that he got a good, protein-filled breakfast – he has had some sort of egg breakfast almost every morning since he was 6 or 7! He would usually eat a snack after school, which I kept healthy (no chips, cookies, etc) and small so that he would be hungry at dinner time 🙂

      • #136511
        Mazz 72

        This is great advice! I will definitely try your suggestions with lunch, egg breakfasts, and snacks. It helps people with more experience than I have taken the time to give me advice. Thank you SO much!

      • #136515

        My daughter just started taking medicine. It killed her appetite but she is just as happy as she ever was. I would definitely take her off anything that negatively affected her mood. I think that’s more important than school work. if this was happening to my daughter, I would try halfing the dose to see if it improves her school work a little bit without affecting her mood.

    • #136401

      I agree with Penny. They have a great article on here about combination therapy that I found right after I had done a professional development with a top psychiatrist from a children’s hospital that had basically said the same thing. Due to my son’s anxiety, along with his ADHD, he was first put on Strattera (not full dose). It helped amazingly with the behavior and impulsivity and intense emotional reactions, but wasn’t helping so much with the focus to get work done. Through my questioning, with his psychiatrist, she agreed to keep the strattera dosing as it was and add a very small dose of Focalin. It’s been wonderful! Obviously not all kids are the same but (while he hasn’t gained much weight) he hasn’t lost any and he eats well! I hope things get better!

      • #136514
        Mazz 72

        Thank you for your advice. This is very interesting to me. I’ll keep an eye on my son. Maybe he needs something to help him with his emotions as well. Because they seem off the charts sometimes. Especially since he started taking Vyvanse.

    • #136405

      My son has been on meds since he was 5 he was always underweight, any of the medications we switched him to affected his appetite. He just would not eat, and when he did he just picked at his food. It’s been ten years and he’s finally at a good weight and has been for a couple of years, what his ADHD doctor suggested was high calorie shakes. So for lunch instead of school lunch or sending food he wouldn’t eat we sent a protein powder mixed with Carnation instant breakfast in a shaker bottle all he had to do was pour in the milk and he was set. He loves it. He managed to increase weight and maintain it. With him being a teenager now he does eat more but usually at home after the medicine has worn off.

    • #136411

      My daughter has had similar issues. If there’s anxiety, he might need combination of anti depressants which can also help with appetite. We do the cyproheptadine and added a pedicure daily. That has really made a difference for her with height and weight gain.
      Studies show that most kids jump back to their height curve after a year or so on stimulants. But adding the extra pedicure has really helped my daughter.
      Keep trying meds and get a good psychiatrist with adhd experience and combination med therapy experience. You are not alone and doing the right thing for your child, keep exploring and this forum is great for extra questions.

      • #136509
        Mazz 72

        Thank you SO much for your response. So appreciated! I will definitely look into the cyproheptadine as well.

    • #136418

      Appetite loss is normal for individuals on stimulant medications for AD/HD. As a mental health professional with over 25 years of community mental health experience, I have worked with numerous clients on various medications. All medications have side effects. You just need to take the good with the bad.

      You have already seen improvements in your son’s behaviors. Therefor, if you would have asked me to consult with you, I would advise you that you have chosen the right medication. Long term stimulant use, unfortunately, has side affects.

      • #136506
        Mazz 72

        Thank you for your reassurance. It really helps. We will continue his meds for now. And also look into the other recommendations.

    • #136483

      I cannot add much to the comments posted above, but want to encourage you. We too struggled with the decision to medicate (4th grade).

      We thankfully have an ADHD doctor and went through some behavioral therapy (mostly for us for how to best communicate with our son and to communicate to teachers. Ex: instead of firing off his brain when I say he needed to get homework done before dad got home… I would just point to the paper with no words). A channel we have LOVED on YouTube is How to ADHD.. her videos have been great and have helped him understand himself.

      We have gone through many rounds trying to find the right combination of drugs. We also use Cypro to help with appetite (taken at night bc can cause drowsiness but help him wake up hungry). We also did genetic testing to find which medications would not work for him: so that saved us time and eased our minds on what we would try…. we listed everything on the test, even OTC as we were doing this test once.

      Now, as a high schooler, some maturity has finally kicked in and he is able to speak for himself how he finds the medication help and he feels more in control. I’ve even asked if he wanted to try high school without it (as school is project based), he decided he wanted to stay on the med.

      The Cotempla he takes, we don’t do on weekends and he “catches up” on his eating for sure!

      We even met with an endocrinologist to ensure his short stature had nothing to do with his ADHD/appetite… she checked his growth plates, etc and assured us all was normal (just delayed): even gave him the green light to have a milkshake with any drive through meal 🙂 (calories)

      With his mental maturity, he is better about eating when he doesn’t feel like it and is able to make his own meals late at night when he feels hungry.

      Hope have encourage you: keep trying the med combination, but do give it time. There is a combination out there that help him focus and keep his personality.

      • #136503
        Mazz 72

        Thank you so much for adding to the conversation. I really do appreciate hearing everyone’s experience. It helps to know I’m not alone. Your suggestions are encouraging and I will definitely look further into it. I’ll try anything, leave no stone unturned.

    • #136526

      So I wonder if maybe a more holistic approach would be more effective for you. My 10 yearold son has Severe ADHD (tested at 95%) and is currently taking Vyvance at 60mg. We saw his lack of appetite and moodiness as well. But after about 5 months the mood swings became less frequent at 4 times a week compared to daily. But then we also took a look at his diet and sleeping patterns. As a test we removed cow dairy, added sugars (listed as such on labels), red dye 4, blue dye 40, tried gluten free. We only removed one at a time for like a month. There maybe other possibilities diet wise as well you may need to try. We learned that our son has a cow milk only intolerance which in turn made the mood swing almost nonexistent. (Side learning is we found out that my wife and I also have a cow milk intolerance) Less products he eats on a regular basis without Gluten helped his focus. Also found even though he was sleeping it was not really good quality of sleep (found lemon worked way better than lavender in a diffuser at night). We do not give him his meds on days off from school to give a great idea how well the diet and sleep adjustments were doing on their own. The weighted blanks we saw no improvement with him but he refuses to sleep without it and he says it helps him. The school is looking at mainstreaming him 100% out of the Austum class and we are looking at possible lowering of the Vyvance dosage this summer to see if it is not as needed as before. We will push back on full mainstreaming because we would rather slowly pull him out as not to over interrupt him.

      By no means is removing something from ones diet an easy task and takes time. Shop well app can help you with some of this. Just keep trying different combos and you will find out some very interesting things.

      Side note the brian produces over 30 different chemicals so which ones that are out of balance can cause ADHD. So we have to find what we can adjust to help balance that chemical(s) that is/are out of balance.

      This is great way to have a compromise in the family. Good luck and stay positive. I hope that some of this helps.

    • #136643

      My son is also 9, has tried several meds, with similar consequences. Vyvance seemed to increase his volatility. He’s on Biphentin and doing great at school. He is subdued compared with non-medicated self, but the negative feedback he would experience at school is worth the trade off. We don’t take him off meds on the weekend for the same reason.

      Appetite: he is maintaining weight, but he’s always hangry after school. Like above, I try to limit after school snack somewhat so he’ll eat dinner.

      Lately we tackled his lack of sleep issues.

      Mostly I want to say, I empathize. There are lots of good ideas, but you can only try so much at a time. It can be very overwhelming. Hang in there. Try your best. Affirm, love, give yourself breaks when you can.

      It took time for my husband to accept using drugs (due to his experiences), but we decide together. You have to be a team.

    • #136945

      This has saved my sanity saved my son so he can focus and enjoy and all around have a sense and world of normalcy…

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