Hi, I'm here for my 10yr old grandson. He was 48" tall and 48 lbs almost 2 years ago. He Looks more like 7 yrs old. He has been taking concerta for the last 3 years until about 2 months ago. It's good for him, but he will not grow and will not eat. Plus, it makes him have horrible constipation to the point of having to go to the hospital sometimes. He went to a gastro dr and was given miralax, it helped a little. Then, I found out it's very bad, so I stopped it.
l found out concerta causes stunted growth, no appetite and constipation. We tried other medicines to see if the side effects would stop. First was intuniv - after one pill, he slept for 18 hours, barely breathing, very slow heart rate.
Then, focalin. - No appetite, no growth . Then, risperdal - very bad nose sniffing tic to the point of crying and teacher keeping him out of class. Kept doing this for a month. Trileptal. - Started a new psych for insurance reasons. New psych very concerned, said it was for seizures. Stopped it. Focalin - no appetite, weight loss. Clonodine - very serious mouth tic for 4 months. Had to wait or neurologist appt, tic stopped before the appt. Strattera - took to stop tic from clonodine. Took one pill, was like a wound up monkey. Couldn't even stay in school that day. So I stopped that.
All these meds no appetite, lost weight, bad constipation . Concerta was the last one tried and helped the most with symptoms. That's 8 medicines in all.
Right now he's taking natural supplements. 3 types of magnesium, and creekside focused mind Jr. All summer, he has been fine. Constipation gone, eating normal, gained 10 lbs. Grew 2 inches.
School started last week, and just today teacher told me he's all over the place, can't concentrate, very hyper. It's very expensive to keep jumping around finding natural remedies that work.
I asked his last psych about all this. He said all stimulants and nonstimulants cause all these things. About 6 months ago he had genesight test done. It didn't test all meds for this. The ones he tested for showed the right ones for him are the ones he already tried.
I'm trying to find list of every medicine for adhd. If anyone knows them all, could you let me know what they are? I know this is very long and I'm sorry. Thanks. So much for reading this !
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Unfortunately, the side effects are very common. My 6 year old takes Concerta, and also takes Cyproheptadine to help with his appetite, Hydroxyzine to help with anxiety/tics, an SSRI, and Clonidine to help with sleep. There is no perfect recipe, and often, solving one problem produces another.
Good luck. I've found the information on this site very helpful for troubleshooting with meds!
That sounds awful for everyone. Please stay strong and take care of yourself too! I know there are special schools for Special needs kids that perhaps wouldn’t require as much medication. Not sure if that is an option but happy to hear that the natural supplements are making a positive difference. Understandably, Many teachers aren’t equipped to handle these kids. Best to you.
I am so sorry for your grandson’s ordeal with the meds.It looks like he tried all possible stimulants and then moved to non stimulants and then even some kind of anti psychotics.
For what I read you stopped trial with Atomoxetine (Strattera) after one day. Could you explain more the side effects there- you said he couldn’t be at school this day (was he manic and hyperactive or was he too much sedated?).
Stimulants has been disastrous for my son’s mental health and well-being too and we had to stop them.
The day we stopped torturing my son with the stimulants (Methylphenidate XL modified release) he told us ‘I am so happy’. He also sat with a slice of bread with butter and told me first time in months ‘Mummy this bread tastes soo good’- his appetite and his taste buds were back. On stimulants he was permanently slightly nausea, dry mouth and not able to eat and ticks and aggressive outbreaks, emotions up and down.
My son is currently on Atomoxetine but the doctor was very cautious starting it slowly- he was titrating for 6 weeks- first 10mg, then 18, then 25mg. He kept my son on 25mg for 3 months and on my request now he agreed to move to 40mg (my son weighs 30kg and continues to gain weight and is growing okay). Basically every child reacts differently to meds and if you only have 1 day trial for Atomoxetine then I think it’s not enough time to show if this works or not. Has your grandson been starting on the lowest dose of 10mg?
I know that the leaflet says it can be then moved up to a high maintenance dose after 3 days but I found it very wise that my son’s psychiatrist kept him on a low dose for 6 weeks. It gave his body a chance to slowly get used to this new medication.
My son has gone through an ordeal whilst on Methylphenidate so I would never advocate for any young children to use stimulants for their ADHD, but that’s my opinion as a parent.
My son greatly suffered on Methylphenidate. We gave it a chance for 8 months but the side effects were unbearable (including not being able to eat, debilitating tics, pulling skin around his fingers- he developed wounds, urinary urgency- he felt desperate to the loo even if his bladder wasn’t full and he was wetting himself at school- in the classroom). His psychiatrist was telling us that’s ‘this is not medication causing it and that we need to refer him to incontinence clinic and to eating disorders clinic’! I mean this was for me like some kind of bad dream- I felt like doctors do it to our children to make us (wealthier) parents spend more money on private healthcare (since in the UK none of this would be covered on my private health insurance and on national health system waiting lists are 1-2 years and sometimes more). Luckily psychiatrist couldn’t argue with the ‘rebound effect’ on Methylphenidate, my son was suffering from in the morning and then again about 3-4pm until the bed time. However in a day he wasn’t right either- talking to himself, making wounds around his fingers and all the other side effects. It took us 8 months of a nightmare and eventually doctor agreed to change to Atomoxetine. On a first follow up about Atomoxetine doc asked about the day time wetting and I said that the minute we stopped Methylpenifate, the day time wetting stopped too, my son stopped feeling permanent urinary urgency. Doc said that clearly stimulants ‘don’t agree’ with my son hence he wasn’t trying any other stimulants. I would not agree to give my child any other stimulants, I would rather change the doctor had he insisted.
As you say- now your grandson had a complete break from medications and I think you should be brave and try medication again. Why don’t you give another chance to Atomoxetine (Strattera) but starting on the lowest dose for a good few weeks. I know from my friend who’s son is also on Atomoxetine that her son was extremely sedated for about 6 weeks on Atomoxetine- he was falling asleep middle of the day, like at the table having his lunch. Yet after 6 weeks his body got used to it and currently his ADHD is very well controlled and with minimal side effects. Her son can’t cope with high dose- his maintenance dose is half of what my son’s even though they are the same age and weight, yet the low dose controls his ADHD very well. It just shows how meds works differently on every child.
My son for example has never been ‘sedated’ or even sleepy on Atomoxetine.
His appetite has greatly improved on Atomoxetine (even though listed side effects of this medication is poor appetite and stunted growth) in comparison with ‘no meds’ (where he was so hyper active that he could not sit though the meal to finish it). On stimulants he couldn’t eat at all…
After a few months on Atomoxetine I started giving my son Zyrtec (it’s a hay fever tablet which is antihistamine and hence increases appetite). Mind you, my son has had all the tests in the world and he is not allergic to anything, so I am giving him this antihistamine purely to help him increase his appetite. Zyrtec is safe to use even in babies and there is a long standing evidence of it’s safety profile- it doesn’t interact with any other medications so it can be safely given to kids. For my son’s appetite it works wonders!
You mentioned ‘natural’ remedies for ADHD. Yes I’ve been there too…
I found that none of this ‘natural’ remedies works really. I continue to give my son a child’s multi (I use Wellkid multi vitamins and minerals and Equazen (Omega 3) both produced in the UK).
Be cautious though - some of vitamins etc can cause nausea, let’s say on an empty stomach etc. on so many occasions my son felt nausea after Omega3.
Gastroenterologist advised to give my son BioGaia (l- reuteri probiotic) because it’s use in children is well researched and supposedly it’s evidence based it’s good for gut. I must say that ever since I give him this BioGaia daily he is more resilient to stomach bugs (all the food poisoning and vomiting bugs kids bring from school or holiday camps…- he’s definitely now more resilient to this and even if he gets that he recovers quickly).
Just to emphasise - I give the same vitamins and Omega3 to my son who doesn’t have ADHD.
I give my son with ADHD bio ginger capsule (produced in Germany) with every meal and he stopped feeling nausea. Gastroenterologist rolled eyes at me when I said I give my son ‘ginger’ capsule daily for his ‘functional nausea’ , however he said that it won’t harm and if it makes me as a parent feel better that I am ‘doing something’ then go ahead, he also added that ‘in many European countries (he is Italian) people like herbs and natural remedies. Ginger has been used for centuries and it’s been researched and it’s safe even to use by pregnant ladies (large scale study in pregnant women in Sweden taking ginger for pregnancy nausea), so I know it’s safe and won’t harm giving to a child.
With other ‘natural’ remedies and even with vitamins and micro elements which are not part of a multi, I’d be cautious as they can interact with medicines.
For example very high magnesium dose can cause diarrhoea. Iron in high doses also can cause let’s say that other micro elements don’t absorb well and some unpleasant gastric symptoms … And so on…It’s all so complex.
Before we started my son on proper prescription medication for ADHD I used to give him green tea tablet (l-theaine) and then I read that tannings in tea in high doses stop absorption of iron from food- and guess what, my son developed iron deficiency). Also it didn’t help him at all with ADHD symptoms, if anything it made his focus even worse, because kids with iron deficiency do suffer from lack of focus, twitching leg and even ticks and ironically low iron also causes kids to have poor appetite!
I found Paediasure and Ensure to be a sanity saver for me- when my son doesn’t want to eat and we are in a hurry I don’t waste time, I just blend Ensure with milk and a bit of Nesquick and ice and tell him that he’s having McDonalds milkshake. He likes it and it’s full of protein and nutrition and probably about 500 calories in one ‘shake’. He also likes it with blended banana and you can try some other fruit. It then has fibre and helps with constipation. I also like to pop there a raw egg yolk (eggs in Europe are safe, all hens are salmonella vaccinated and eggs aren’t washed so they stay fresh even when not kept in the fridge). He can’t taste that there is an egg yolk in the milk shake but I know he’s getting all the natural vitamins and choline (important for Brian development in children).
Of course for any child, not only a child with ADHD it’s important to give the body all the vitamins and micro elements, to have electrolytes balanced etc. but I wouldn’t trust too much the ‘natural remedies’ particularly helping with ADHD symptoms.
I thinks it’s more of a rule that ‘a child who slept well, has enough calories for growth and enough nutrition in their food so their brains can continue to develop’ - then even the ADHD symptoms might seem more mild…
But only a prescription medication really helps to fix ADHD.
All the best of luck finding a medication that agrees with your grandson and also helps him truly with his ADHD symptoms.
Big hugs and take a deep breath! I’ve been where you and like your little guy mine was very complex! It took us 8 meds to find the right one. Loss of appetite is very common with most Adhd meds. I would give me son a big breakfast and have him take his pill at the same time. Don’t give him the medicine before he eats…. Lunch was basically snacks bcz their appetite will decrease throughout the day. Dinner was also big and definitely dessert- big bowl or ice cream! Whatever he wanted to eat, I let him eat. He would be starving at the end of the day. The trick is finding which med works for him in school. If Concerta is working, i would keep him on it and perhaps decrease his dose on the weekend so he will eat more. My son takes Focalin as that is the only med that controlled both his impulsiveness and kept him focus in school.
We started our journey at the age of 5 and my son is now 17. He is thinner than most of his peers but it almost 6 ft so he grow over the years but just slower than his peers. Good luck and don’t give up.
There are lots of words above, so I'll try to be brief. Our experience was that stimulants (Concerta) did not affect growth but that lack of nutrition from not eating would. Like the writer above, we found things he would eat, particularly at breakfast. Breakfast would be before the pills and we would supplement whatever he ate with a bowl of peanut butter (Jiff natural peanut butter bowls). We would tell him that as a reward for doing his best, he could have icecream after dinner, but of course, he'd get it every day. Icecream is not unhealthy, just high calorie, which would be bad for many of us,but not a child who needs the calories. Let me tell you 2 things about the future. First, your son will eventually be a teenager. I have found nothing which can compete with the appetite of a teenage boy. Last night, my 16 yo, who has been on Concerta since age 7, came down around 11 and the next thing I heard was him asking if 3 bowls of cereal were too.many before bed. Had had a huge dinner. Second, my 16 year old (on Concerta since age 7 as noted) is now 6'2". For context, I am 6'1 but definitely finished growing. Good luck to you.
I might have missed it in your post but it doesn't look like your grandson has been tried on the amphetamine-based meds.
Stimulant medications fall into 2 broad categories: 1) the methylphenidate derivatives (Concerta, Ritalin, Focalin, Metadate, Jornay...), 2) the amphetamine derivatives (Adderall, Vyvanse, Dexedrine...)
If your grandson was tried also on Risperdal and Trileptal, I suspect that he may have also been diagnosed with DMDD or some other type of mood disorder (which, unfortunately, can be exacerbated by stimulant medications).
A common protocol for this combination of disorders would be to stabilize the patient with either a neuroleptic (like Risperdal or Abilify) or an antiseizure med (like Depakote or Trileptal). Once the patient is stabilized then there should be a careful attempt at introducing stimulant medications -- during this process the amount of mood-stabilizing agent may need to be increased as well.
This approach usually identifies the lowest effective dose of medications for the child.
For the type of hyperactivity I believe you are describing, my guess is that stimulant medications may be needed to control his ADHD enough to tolerate school.
However, you can also try supplementing his diet with fish oils which have been shown to be helpful in controlling ADHD, but this takes weeks of consistent high levels for there to be an effect. In fact Omega-3's and PS's were shown to be so effective there was once a prescription "medication" that was just a combination of these. It was called Vayarin but it has since been taken of the market.
I use Additude for much of my research. Here is a list they have shared. There are also weekly webinar, podcasts and other valuable resources on this site.
If The Concerta helps him a lot with his ADHD symptoms you might try one of the appetite stimulants to take in conjunction with it. My son has a lot of appetite suppression as well with stimulants. Will you try not to take our stimul on the weekends and during any of the school breaks. He too gained a lot of weight this summer which was great for him. We really haven’t had a lot of problems with height. Just weight gain. our psychiatrist mentioned there’s an appetite stimulant - I forgot the name of it , that we could use if need be during the school year.
My 13 year old daughter is on 40 mg of chewable vyvanse - no side effects, appetite loss for lunch, but has food after school and late dinner. Growth is good. We never hit the sweet spot with the meds and can't up dosage based on her height and weight. This med worked well; however, the hormonal change at puberty wreaks havic on meds.
It sounds like you’re doing everything you can to help your grandson! ADHD can be so hard to manage. My 9 year old cycled through stimulants over 2 years but had to stop due to side effects. I will say that I got his weight/growth steady (although slower than it was prior), with high protein/fat breakfasts, snacks, dinner, drinks, ect but it wasn’t ideal. Now that he’s seeing a Neurologist he recently started guanfacine (Intuniv ER). Has your grandson tried that? After a lengthy exam and observation my son’s neurologist said he may need upwards of 4mg, so we are working our way up and will see how it goes. We also do creekside focus Jr, Zahler’s ChildCalm, and Barlean’s Omega Swirl with bacopa monnieri mixed in. I agree that summertime is so much easier than school time for my son. Being outdoors, going on field trips with summer camp, ect and he has minimal issues but once he’s in a classroom setting he goes bonkers. Best of luck!
My oldest grandson was on Focalin XR all though grade school and only ate breakfast and dinner. Had to switch several times when he got unstable in middle school and is now on Guanfacine and Wellbutrin. Still does not eat at school. Younger brother could not do stimulants but has been on Strattera for years with the addition of Guanfacine recently.
One is 6'1" the other is 6'3". Both suddenly shot up in high school.
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