Please help-ADHD medication

My 6 year old son was diagnosed in April with ADHD. At the time he was in a level 4 public school (not good) with 30 kids in his kindergarten class with only one part time para. They said he was doing "ok" and "just needed some extra reminders for behavior and listening". I knew he was hiding and not absorbing nearly any of the material in class... based on his performance and simply how smart he is. I didn't want to medicate so I added physical activities after school, made him organic smoothies with fresh pressed flax seed oil every morning and gave him all natural focus firmuja and gluten free diet. Didn't see much difference. In sept, he started at a private catholic school with only 17 kids in his class and a full-time para). Within just two weeks the teacher let me know that without one-on-one attention, he will most likely fail. Even with taking a spelling quiz one on one, he got a 67 and HE KNEW EVERY WORD BY HEART. I didn't want him to get down on himself for strugglingvin the new school, so I decided to medicate. His Neurologist prescribed 5 mg of Adderall XR. He's been on it for 5 days and has had 2 panic attacks and a physical outburst where he bit and slapped another kid, all of which is abnormal for him. He is impulsive and emotional, but never out of control like that. I think it's a side effect... so today I letctge Neurologist know I'm not giving it to him anymore and want to try something different.

I've heard positive info on Focalin and awful info on Concerta (to include that the trials were tested on majority 13-18 year olds, yet it's administered to 6 year okds). Does anyone have any suggestions? Also, has anyone had success on a non-stimulant?

Thanks!

Kristy

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24 Replies

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  • Hello I do think you are doing all the right things for your son My son 9 was also just diagnose but his neurologist wanted to try natural and so he is doing caffeine she recommended coffee and tea for up to 4 cups per day and I will tell you at first for cops was too much for him and especially the tea so I cut it back to about 3 cups of coffee I am using the single package with hazel nut so I send him to school with two bottles only using one package and I will use another half package at bedtime so far so good we have never been a child to have any kind of aggression or outburst so this is what's working well for me right now

  • And please at school by law The school should offer you the 504 plan another thing to help my son concentrate in school on Amazon and there is chewy jewelry and pencil toppers which is awesome along with a special Seat with a part that he can rock and his feet without disturbing anyone and that really helped him to concentrate

  • My son was diagnosed in Feb. when he was in kindergarten. His psychiatrist started him on regular old short acting Ritalin (methylphenidate generic) at the lowest dose (5mg). He said the idea was to start there and increase the dosage every week or so until the proper dosage was found. This would give us a chance to see if there are any side effects and to find the right dosage before going to a long acting or extended release version. He started with Ritalin as opposed to Adderall simply because it is usually the mildest as far as side effects go and if Ritalin worked there would be no reason to go with Adderall. All doctors are different but I think this is a typical approach especially with young kids since it starts off nice and slow. I'm sure your son's doctor had his reasons but I'm surprised he started him off on Adderall XR.

    By the way, my son is still taking just the 5mg of short acting Ritalin and it has made a day and night difference in him at school! Every child needs a different dose but this works for him. The decision to medicate your child is gut-wrenching and I struggle with it still. But the bottom line is my child simply CANNNOT function at school without it. I hate that but it's the truth. He was an absolute mess behaviorally from the very beginning of kindergarten and it was affecting his self esteem already. Now he is doing very well at school (still has some issues) and is making friends.

    We also do behavioral therapy with a therapist both for my son and for me and my husband so we can learn how to help him. Our psychiatrist said that the medicine won't and shouldn't take away all problems. (If it does the dose it too high) It should give the child the ability to focus and the ability to fix behaviors that he wants to fix. He still has to want to fix them!

    Hang in there. Unfortunately there is a lot of trial with medication but if your son needs it don't give up.

  • Thank you so much! We are trying Focalin 5 mg. If that's no good, then we'll try a non-stimulant. I will also mention the Ritalin option if this doesn't work. 🙏🏼🙏🏼🙏🏼

  • Unfortunately every child is different, but that sounds like a bad side effect. The good thing about stimulants is how quickly they act and are out of the system. Basically you know pretty quickly if something is going to work. My son has been on 8 different medications since March, and so far the side effects have outweighed any benefits he was getting. Good luck.

  • Oh man, have you tried non-stimulants? Do you mind sharing which non-stimulant Meds and what the side effects were? If Focalin fails, we're going to try non-stimulants.

  • Clonadine was first: it was supposed to "knock him out" at night, and he was up three times. Then we tried Guanfacine ER. After the initial period where he had to get used to the medication, he seemed to be ok, but it seemed to wear off quickly. When we talked to the Dr she told us to try it twice a day. When we got the refill, it was a completely different medication than what we had been giving him. Turns out the pharmacy filler the ER prescription with regular Guanfacine 😡. Once we got him on the ER he started getting violent. We also had problems giving it to him since they were horrible tasting pills, so next we tried Dyanavel, which is an ER liquid stimulant. He complained his stomach hurt all the time. Then we tried Quillivant, another liquid stimulant (one is in the same class as Ritalin, the other the same class as Adderall, but I don't know which is which). That one made him feel horrible AND gave him a facial tick. So then we tried Abilify, which is a mood stabilizer. That seemed to help the best, but he still complained his tummy hurt. Finally we tried Tegratol, which is an anti-convulsion medication. That didn't do anything to help with his ADHD, and made him violent. We went to a neurologist who had us try Vayarin, which is a supplement. He has to be on it for 3 months before we will know if it's working.

  • I'm praying for you guys! You've been through the ringer. I hope this works for you!

  • My 7 yr old is also trying Vayarin (in conjuction with Adderral which seems to be making him more aggressive & violent and not showing many signs of increased focus or attention). We are meeting with his psychiatrist next week and going to be trying something different. I like the premise behind Vayarin being a natural supplement, but the Adderral is putting us all through the wringer. I'd be interested to hear your experience, it's helpful to all of us who are in the same boat!

  • We're in the 2nd month of the 90 days they say he has to take Vayarin to see and improvement, but so far I'm not very hopeful. We just put him on Prozac for anxiety, and his behavior at school is markedly better.

  • Our 7 yr old is now in the second month of Vayarin, and we had to pull him off of Adderall due to extremely violent and aggressive outbursts that also did a number on us. He's currently on a half dose of Wellbutrin 1x per day and we are seeing some improvements. I do give him 1 mg of Melatonin at night (in the form of GoodDayChocolate's 'Sleep' chocolate' appx. the size & taste of an M&M). We've had good success with the Melatonin. We're all going through the same thing, it is helpful to hear other's successes and struggles to put your own into perspective and know we're part of a community, not lost on an island somewhere.

  • Our grandson’s pediatrician told us about a genetic test that is available now, which will show which type of drug would work best with his genetic makeup. We are planning to request it for our grandson, because he has had problems with his medication as well. He was on Vyvanse originally, and now he is on Concerta XR (generic form). He is resistant to taking his medicine now that he is older, and he says he hates the way it makes him feel. Lately he has been doing very strange things, like destroying toys and acting out in different ways than he ever has before. He seems to be doing better at school with the meds, but he acts worse than ever at home after it wears off. I am sorry that any of our kids are having such a hard time so early in life. You are in my prayers.

  • We had the gene study done on our son, and it was fascinating. We were told to take the results as a suggestion and that some medications that show a potential issue could still work well.

  • I am interested to know how you get the gene study done? My 6 year old son was just diagnosed with ADHD and my pediatrician does not seem open to any non medication options. He said if they work then the child does not have ADHD. We have good and bad days although lately he is lashing out and hurting other kids. We have practiced how to calm down when he is angry. To tell the teacher he needs a break although this last incident I asked why he did not do this and he said he did but his teacher said he could not take a break so he proceeded to hurt a fellow student with an ipad. I have asked if they can schedule gym class first thing in the morning as I heard exercise will keep him calmer. They said they would think about it and get back to me on what accommodations they can make. What options do I have if I do not medicate him? Just live like this forever and hope the violence does not get worse? He is good at home for the most part and I can calm him down pretty quickly but it won't be long before he is bigger than me and that scares the crap out me. So as you can see, at a cross roads and feeling alone.

  • I've read a study that has shown kids do better when they walk to school. If you can't schedule gym first thing, can you have your son walk to school or the bus or walk around your neighborhood before school?

  • With this type of reaction to the medication, ask his doctor to check if he has any anxiety. This would explain the reaction since, in some children with anxiety and ADHD, they may have aggravation of the anxiety with a stimulant medication.

  • Thank you. I think that may be what's happening. I have anxiety so it's very possible.

  • My son started taking 36mg of Concerta at 8 without incident. At 10 1/2, the dose was reduced to 18mg. Medication is person specific; a family member has had to change medications five times in five years where is Concerta has worked for my son for three years now . I would use a psychiatrist for medication titration.

  • My grandson lives with me. He has been on Focalin XR since kindergarten and did really well, in a magnet program in middle school. But now he is having trouble focusing and with aggression. Doctor started him on Seroquel for depression and moodiness. He was having trouble sleeping on it so he added Remeron. He got majorly violent. Stopped that and tried Intuniv (guangacine) to increase his focus. , so moody and unhappy on that.

    Has anyone had experience with behavioral therapy? And where do you find that?

  • Oh no! It's such a rat race trying to find the right medication. So far, thank the Lord, Focalin ER 5 mg is working for Domenic without side effects. Have you tried melatonin (all natural) for sleep? My son has always had a sleep issue and from my research 70%+ of kids with ADHD also have sleep disorders. With the melatonin he is much better.

  • Not to throw another wrench in the works, but it’s also possible your kiddo has gene interactions that are informing his reaction to the medicine. My son’s psychiatrist had him do a cheek swab for gene testing, which showed he had several significant interactions that could affect his experience with ADHD medication (not to mention psychiatric medications and many others). It was almost a relief to see the test results because we’d already tried Concerta, Intuniv and Strattera- all with pretty awful side effects. So now, with this new knowledge in hand, it looks like Vyvanse might be ok, but his genes could cause him to have more of it in his blood serum than other folks, so I’m literally dumping the powder from a 10mg capsule into 4oz of water and starting him at just 1oz per day until we know how he responds to it.

    I realize this probably sounds a little crazy, but it is scientific. The trick is getting a prescriber who will do the test (and knows how to interpret the results). It’s ridiculously expensive if you try to order it yourself directly through the lab. The DNA test is called Genesight and the company that runs it is called Assurex.

    Good luck to you - I know how hard it is!!!

  • Medications are so tricky. I have two grandsons who have lived with me all their lives. The oldest we put on Focalin XR and kindergarten and he did Fabulous all through grade school. The younger one Focalin XR made so angry and aggressive. He ended up putting him on Strattera, non-stimulant.

    As they grow medications constantly have to be adjusted too.

    Had the oldest one on Vayarin for 2 years. His pediatrician suggested trying it. But I've never seen it made much of a difference. Our insurance doesn't cover it either so I have to pay out-of-pocket. I'm afraid to stop it just in case it is doing something.

  • Hi,

    The only success we've really had is on Clonidine, and really that has helped because we give it at night for sleep and it has a lingering positive effect in the morning. When we try giving it during the day, he falls asleep in random places. We tried Guanfacine, and it turned him into a grumpy grizzly bear. We also tried Lamotrigine. We saw no effect either way. We also tried Straterra, and, unfortunately, it seems to be causing digestive upset. So, now we'll be starting out with Ritalin. We'll stick with Clonidine at night. Maybe when he puts on more weight, we can give him the extended release Clonidine during the day, but for now, Ritalin is the next option!

    I think it is just a matter of experimenting. There are several drugs out there that have been used, and each child's ability to metabolize and use those drugs is different. So, if we look at our situation in a glass half full perspective, at least we've crossed a few off our list. :)

  • My heart goes out to you. Medication is a hard decision. Finding one that helps your individual child is like finding the golden ticket. One comment you made hit home for me . My son would ace a verbal spelling test. When he was given a written test he would always fail. This was before he was diagnosed. When I would study for a test with him, which was torture fir both of us , he would ask me to ask him questions instead of a written test. I noticed that he did very well with verbal. At 13 this is still a problem that I am seeking answers to. The school child study team said they don’t test students for dyslexia or dysgraphia . This could be something to consider also . Both Ritalin and Aderal made my son feel numb and unhappy besides complete loss of a wonderful appetite. What did help was therapy , good nutrition , proper sleep and advocation by him and myself at school. Good luck and God Bless!

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