Hidden6 years ago

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

pattyg1 in reply to Hidden5 years ago

Coffee?? Tea??? this is quite baffling...as I wouldnt think any child should have coffee at all...still...I would like to know more about this for my grandson....

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Hidden in reply to pattyg15 years ago

Yes his doctor recommended it and so far so good apparently children with ADHD depending on how mile or severe the keys is but kids with ADHD Has the opposite effect with caffeine when we have caffeine we are Wake up Could something be hybrid mind is racing on the alert children with ADHD brain is already Hyper soda caffeine give them the opposite effect it slows down the brain so that we they can focus better so far it is working very well on my nine-year-old perhaps maybe it will be different for every child but I have no complaints so far he doesn’t have any meltdowns doing well in school he is as normal As can be and I thank God

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Hidden6 years ago

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

ha11 in reply to Hidden5 years ago

Great response

Also 504 plan needs doctor approval or school alone can do that ???????

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annmclpc in reply to ha115 years ago

You need to have a medical diagnosis for a 504. Even with a 504, it's often difficult to get teachers to recognize issues so plan to be an advocate for life.

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Teachermom1 in reply to ha115 years ago

I'm a teacher and a parent with a child with ADHD. As long as there's a medical diagnosis, the school is required by law to provide accommodations. Teachers by law are required to follow and implement the needed accommodations. Please check in with your child's teachers to make sure that accommodations are being followed.

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jleigh46 years ago

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.

Domenicsmom in reply to jleigh46 years ago

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. 🙏🏼🙏🏼🙏🏼

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JustJes in reply to Domenicsmom5 years ago

I just wanted to add we did the exact same 5ml of Methylphenidate and it was amazing how well it worked. He had almost immediate positive reviews from teacher. It took about 18 mos before it was losing effectiveness. So we are struggling with bad side effects from Concerta and have dialed back for now. It isn't just one answer.

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MunchkinMommy5375 years ago

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.

Domenicsmom in reply to MunchkinMommy5375 years ago

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.

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MunchkinMommy537 in reply to Domenicsmom5 years ago

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.

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Domenicsmom in reply to MunchkinMommy5375 years ago

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

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LuckyMonkey in reply to MunchkinMommy5375 years ago

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!

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MunchkinMommy537 in reply to LuckyMonkey5 years ago

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.

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LuckyMonkey in reply to LuckyMonkey5 years ago

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.

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Reeeba1 in reply to LuckyMonkey5 years ago

Hi. How has Vayarin worked for you? After about 4-5 months of Vayarin combined with Dyanavel (he’s been on that a year with some success) we finally are seeing amazing lmprovements. His teacher told us this week it’s like a switch flipped. We also tried non medicinal methods first like many here but - whatever works. He does not eat well on the Dyanavel XR though so we are taking him off it on weekends and he also needs Clonodine to sleep.

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GGsMommy in reply to Reeeba15 years ago

Dyanavel XR does have some medications that contraindicate with it like Zoloft. Just make sure you check for contraindications. My son was on Vyvanse which brought out tics at higher doses. So we switched to Dyanavel XR. However, the dumb psychiatrist did not check contraindications. So I've been dealing with my son's aggression/anger issues. She increased dosages, then refused to take responsibility to address the prescriptions she wrote for him. So I went and checked contraindications myself. And my son has been taking Vayarin for 3 months now, not much difference at this time. The Vayarin is supposed to support the nerve coating development so the nerves can communicate better. I'm looking into other therapeutic approaches to my son's ADD/ADHD and OCD. He's very smart, but intense emotions/extremely sensitive. Tough when the kids get fixated and logical thinking is not occurring. I'm not sure these doctors know what they prescribe. So stay vigilant on checking for drugs, foods, and medications not mixing well together. And never give medication with citrus juices like orange, lemonade, grapefruit juices, etc. Just plain water is best.

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NMR8177 in reply to MunchkinMommy5375 years ago

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.

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MunchkinMommy537 in reply to NMR81775 years ago

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.

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Skcrutcher in reply to MunchkinMommy5375 years ago

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.

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ladysoc in reply to Skcrutcher5 years ago

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?

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Kully in reply to MunchkinMommy5375 years ago

How do you find someone to do the genetic testing? Does a specialist conduct the test? Thanks!

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cjs97e47 in reply to NMR81775 years ago

If you don’t mind me asking why did you go to stop vyvanse that’s what my son was prescribed but we haven’t started it yet only bc I’m hesitant to do meds

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NMR8177 in reply to cjs97e475 years ago

How old is your son? Our grandson was 5 when he was on Vyvanse, and it was very effective in helping him to be more focused in school. He was in Pre-K then. The main problem with it was that it affected his appetite and caused him to basically stop growing. We kept him on it until the middle of his Kindergarten year, but we were so concerned about his lack of growth that his doctor suggested that we take him off of it for a while, which we did. His teacher said that she felt that he did much better without it. His personality was different when he was on the medicine. He was shy and did not seem to be very happy. Also, I think he had more anxiety. I think an older child might do better. When he started on the Concerta, it did not seem to affect his appetite quite as much. But the problem we had with both meds was the rebound affect when they wore off. His behavior was much worse in the evening than it had been before he started on the medicine. We took him off of the Concerta last summer to give him a break from it. But when we tried to start giving it to him again after school started, he was defiant and refused to take it because he said he did not like the way it made him feel. We are still struggling, unfortunately. We started him on Vyarin a few months ago which is a natural supplement that is supposed to help with ADHD symptoms. So far we have not seen a noticeable difference, but we want to try it for a while longer. We have taken him for counseling and are trying to get some help for ourselves as well. I know that it a difficult decision, and every child is different. I hope your son does well with Vyvanse. Many children do.

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cjs97e47 in reply to NMR81775 years ago

My son is 9 and was just diagnosed this month so I’m still try me to research and see if I want to use the meds hank you for this information

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GGsMommy in reply to NMR81775 years ago

Read about medication rebound. When the medication wears off, then the emotional control also tends to go. Cognitive behavioral therapy and mediation for kids are also good. My son was in an angry fit today. And this may sound terrible, but I ended up giving him some Extra Sleepytime Chamomile tea with some honey. He did not get sleepy, but he calmed down enough to stop raging. Then he realized what he did and felt extremely bad. Medications can have such adverse effects, and contraindications. Especially with co-existing conditions. That's why we're scheduling an appointment to go to a clinic in another state where they do an actual brain scan and full consultation. We already had genetic testing done. And it said some medications may or may not be effective. So it did not tell us what would work versus what would not. Did say he was low on folic acid. I am to a point that I do not trust doctors and teachers are not equipped with good interpersonal skills when it comes to special needs children and emotionally intense gifted children. They are equipped with labeling children instead. So people have to remain vigilant for their own kids. And be aware of whether the school can involuntarily admit your child to a hospital if there is a behavioral plan in place. I've hired a lawyer for our child for this reason. The idiot psychiatrist who was writing the prescriptions involuntarily committed our child who was in a calm state, but suffering adverse side effects from medication that she wrote prescriptions for. I told her to address the medications. So now grievances and complaints are being filed against her. And she had no excuse for not checking for adverse reactions or contraindications because they have an on-site pharmacy.

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Elijah15 years ago

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.

Domenicsmom in reply to Elijah15 years ago

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

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227895 years ago

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.

anirush5 years ago

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?

Domenicsmom in reply to anirush5 years ago

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.

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Sunbreaks5 years ago

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!!!

anirush5 years ago

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.

pwb785 years ago

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.

Busymom08 in reply to pwb785 years ago

Hi! We are still working on finding the medication that helps our son stay focused in the classroom yet not have the horrific rebounding effects after school. I read your post from 10 months ago and was curious how things are going and if you've found a good medication regime for your son?

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Janemariekathryn5 years ago

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!

Cjkchamp5 years ago

My son had increased aggression on adderral too. Psychiatrist now has him on 5 mg Focalin XR and 2 mg guanfacine ER at night. Went from daily issues at school to a couple of times per month. That’s what worked for my 6 yr. old. Good luck!!

Ericanason5 years ago

My daughter also had awful side effects from Adderall and stopped it right away with her and i would never suggest that medication for any child after the experience my daughter had her dr put her on focalin right after the Adderall first 10mg then 15mg now up to 25mg we have a appt Monday to discuss other options focalin is not working well. I wish you and your son the best of luck I understand how difficult and frustrating it is trying to find what works best for your child but don't give up. Every medication is going to work differently on different children what works great for one might not be good for the other I guess it's all trial and error until the right one is found

Jaxy535 years ago

honestly every child is different on how they are going to react to the drug. I just got back results from a gene test to see what drugs metabolize correctly in my son's system. He was on Concerta with no changes and Concerta is one of the drugs that is non-responsive in his system. It really is trial and error. I wanted to leave that trail and error out as much as I could so I got the test done. Good luck