Family with ADHD son in need of help

[DoBetter]

Good Day.

I am hoping that I can find advice on these forums as I am at my wit's end.

My son was diagnosed with ADHD at about age 5. At first I did not want to believe it and was opposed to the medication that was being recommended to control it. I have had a bad experience with medications first hand having grown up in a house where my brother was diagnosed as Autistic and spent most of his life on Ritalin. However, as things continued to get out of control at home with his aggression, mood swings, tantrums etc I eventually agreed to try the medication route. My son, now currently 8, is currently on 27mg of Neucon (generic of Concerta). The difference when he is on the medication and not on the medication is day and night, chalk and cheese. He gets one tablet in the morning and is able to concentrate and behave with no aggression etc. The only problem is that a side effect of Neucon is an appetite suppressant. When he is on the tablet he will not eat breakfast or lunch and just nibbles at dinner, he is so thin. The only things he will eat are instant noodles or cheese on bread. He is son thin and when he stretches you literally see his entire rib cage. So I am not sure what to do. The peace that the tablet brings to our household is life-saving in that there is no constant fighting over every little thing like doing homework, brushing teeth, making his bed, showing respect etc. However, I do not want to have these things at the expense of his health

I am must point out that we live in South Africa and have had various levels of lockdown from last year from our highest level of 5 where for8 months straight we could not go out of our houses. During these lockdowns, we did homeschooling/online schooling. It is during this lockdown period that we decided for the sake of his health to not give him the medication and to try to cope but I think things have gradually ramped up to a point now where something has to give. We are constantly fighting all day long to a point that I don't recognize who I am anymore. I fight with him for 30 minutes plus just to do 10 minutes of work. He is very rude to my wife and me and won't do anything we ask of him constantly telling us he hates his life and hates us when things spiral into arguments. I try so hard to do things calmly with him, asking him to please do his homework, and then he can get some screen time. We even break the work down into 2 or 3 parts in the day spaced with relaxation time for him but it always turns into fighting as all he wants to do is play computer games or watch videos. It is also difficult in that both my wife and myself are working from home so have work responsibilities too

My gut feeling says I need to put him back on Concerta just so that we can have some form of normality in our household and actually get along as a loving family and not fight all the time.

I am not sure if there are better alternatives to Neucon (Concerta) without the appetite suppressant. We are trying something called Release Forte currently which is a natural remedy and while I can see it helps him concentrate a bit better for short periods it doesn't last long and doesn't help with the aggression

I think my son also suffers from anxiety issues. Getting him to sleep at night is a fight every night. We start the sleep routine at about 8:30-8:45 but most nights he only falls asleep by 10. He insists on someone sitting in the room next to him as he is scared of being alone and wanting to know if the security is armed. He also stresses over the strangest things like a balloon he once had when he was 3 that flew away and he won't let us throw anything away like a broken pushbike etc

I love my son to the moon and back and it is killing me inside to be fighting with him like this every day. I am turning into this angry shouting monster which is not me and worse of all my son then mirrors this aggression back at me. I just don't know how to get him to things we ask in a calm manner as I always start this way but he always just flat out refuses

For as long back as I can remember we have always been fighting and I don't want to happen to my son and me what has happened between my father and brother who were always fighting while growing up and to this day can't stand each other. I am not saying that my son is autistic I don't think he is but the similarities in the tension between father and son in both cases is cause for concern for me

I would really appreciate any advice, suggestions and own experiences and what you learned

Thank You

[ADHD_DAD]

Hi. I won't address all of the issues you addressed, just the Concerta and appetite and sleep questions. My son has been on Concerta since about age 7 with the same amazing response you noted on the meds but also appetite suppression and sleep issues. We would give the Concerta first thing in the morning which allowed it wear off by bedtime which helped with sleep. As for the food, we give my son ice cream everyday as a reward (he was told) for good grades and good behavior but it was really for the calories. Icecream is not unhealthy, just high calorie (which would cause weight gain and the corresponding health problems in an adult), but if your worry is weight loss,it's a good solution (and Icecream every day is not a bad childhood). We would also supplement his breakfast with Jiff peanut butter bowls. Again, not unhealthy just high calorie amd he loved it. Now, I will say that his mom was always worried that he wasn't eating enough, but boys pull a truc on you.. they become teenage boys who suddenly eat EVERYTHING. There seems to be no medication which is a match for the appetite of a teenage boy. Now my wife worries he eats too much! Just part of being a mom I think.

I think hyperfocus (which sometimes resembles hoarding in my son; he doesn't like us throw anything away) is pretty normal for kids with ADHD as is some degree of anxiety. I have learned that there a difference between anxiety (a worrier or pessimist, etc.) and an anxiety disorder (which prevents normal function). A psychiatrist could help you sort that out. One needs treatment and one likely does not. Good luck to you. I hope you find the help and support that you need here.

[Onthemove1971 in reply to ADHD_DAD]

Yes.. yes our son was picky and now eats multiple meals a day and a peanut butter and strawberry ( NO SEEDS!) Before bed to keep him from being hungry. We also make smoothies with whole fat yogurt mangos and pineapple.

I also allow him to pick his food and snacks so he wants to eat them.

Our could/us could not survive without 2 types of medication ( stimulant-for focus and mon stimulant for focus and mood control)

Best of luck

[Briankelvy]

Hello kind sir. I am writing you from New Jersey, United States. I am only saying that to show you this is an issue all over the world. My daughter has dual diagnosis of ADHD and Behavior issues. She is currently taking Vyvanse 30mg and Guanfacine 2mg 2xs a day. I wish I could tell you she eats well, but that's not the case. She has tried both the stimulant pills and non stimulant pills and Vyvanse was our last option. There are a few medications the are approved for appetite stimulation you would need to consult your doctor for what is available in your area. We use Ensure Plus to make sure our child gets her vitamins, nutrition and calories which each container has 350 calories. There are many flavors and it has a good taste and good results.

I can't say it enough how I resonate with your situation, struggles, and concern for your child. I do my best also to be calm when I'm directing my daughter, but it can get to an angry state. I wish you all the best my friend... keep practicing being calm...

Brian

[DoBetter]

Just a bit more information

So we generally give our son the "concerta" before 8am in the morning so that it last the longest while at school and also early enough so that it works out of his system by night time.

Hid does have gradually been increased overtime and it might be time for another increase as while he was at school the teachers did not that by 12:30 - 1:00PM he would start to be disruptive. What I like about the Concerta is that it does not turn him into a Zombie but just helps to take the edge off of him and give him more control

He was asking the other day for us to not give it to him as he realizes it affects his eating and he does want to eat. We tried it the one day for school but he was totally out of control that day getting into trouble so then he realized it helped as asked to have it back

I have noticed though that with or without the medication I struggle to get him to sleep at night. He is 8 year sold going on 9 years and always want to sleep in our bed, he never did this as a baby growing up, I would say this developed the last couple of years. I used to have to sit in his room for him to fall sleep, I progressed to be in the next room but there is no way I can just say good night and walk away. I have even gone so far as to get a camera in his bedroom that I can monitor from my phone and then at least leave him with the reassurance that I am watching him but then he insists on constant acknowledgement from the camera that I am indeed watching

We do give our son ensure in the afternoon when he gets home from school. Also during holidays and weekends we try not giving him Concerta at all so that he can at least eat well then.

I guess for the sake of sanity we will continue with Concerta but I do agree checking with a doctor for other alternatives. And then while on concerta give him instant noodles and cheese as at least he eats this

He used to go to Occupational Therapy which helped for a year or so until the OP felt that he had progressed enough and didn't need to return

I think the biggest thing at the moment is the homeschooling we is hopefully ending this week. Once back a school where he can get a bit more rigid structure and physical stimulation things will hopefully improve. Being in each others faces 24/7 for weeks on end is no easy task

Thank You for all the replies. I do appreciate it

[anirush]

My 16 year old grandson had the same problem on Focalin XR. If he is now on Guanfacine and wellbutrin. He is 6' 3 and weighs about a 160 pounds. Back in grade school he would eat a really good breakfast and then not eat again until evening. He was always in the 10 percentile of height/ weight. But his pediatricians said he was healthy and not to worry. The effects that ADHD did on his self esteem and self control was worse than anything the medication was doing.

He is a happy, healthy kid and good student on his medication.

He still eats nothing for lunch at school but says he is fine. Would much rather have that than a child who is constantly in trouble.

[Applecrisp]

We just had a consult with our son psychiatrist and we are going to try guanfacine call with the stimulant he takes, Adderall. The hope is to eventually lower the stimulant dose. And this is more of a longshot, but guanfacine has a side effect of increasing appetite, so we hope we might see something good from that. Our son is also very thin and not much of an eater.

For the sleep, two of our kids take a small dose of melatonin before bed. I don’t think it has anything to do with the ADHD Since the younger one doesn’t have ADHD or take any medication, they just don’t get it a natural release of melatonin at night. It is flat out magical for them, even a tiny dose. We talk to the pediatrician and she says she has nothing against taking it forever if that helps them. With our middle child we went from her getting up over and overUntil 1130 at night to going to sleep nicely at 8:30 every night.

You have been through a lot this year, my sympathy and good luck!

[JJMom16]

My son is 5, and we have had a similar experience with stimulants and appetite suppression. We took him off Ritalin LA for the summer, and he has gained 5 pounds.

What has helped: Citalopram (SSRI for anxiety), Guanfacine (mood stability), Clonidine (sleep), and high calorie snacks.

Re: meds - Citalopram seems to help with underlying anxiety. Guanfacine has really helped during the day for mood stability. Clonidine right before bedtime helps him fall asleep.

Re: appetite suppression - we give a large breakfast before he takes his meds (bacon, muffins, fruit, etc.), and try to offer juice, ice cream, etc. just because we know he will eat it. A bedtime snack is also a good tactic.

When he goes back to school in September, we will likely have to go back on stimulants, unless the Guanfacine is enough (we've added that recently). I'm sorry you are experiencing this, but at least you know Concerta will work, even if there is a high price to pay in terms of side effects.

[MaudQ]

I just want to say to say you are not alone. Lockdown has been a nightmare for families like ours. Try not to beat yourself up too much and let yourself take breaks and try lowering your standards - knowing it’s not forever.

One practical suggestion: we do breakfast in bed. It’s absurd, we literally bring my daughter a tray with something delicious and high calorie every school morning. She eats her breakfast and then takes her meds (a stimulant for the adhd and ssri for the anxiety). Then we let her play video games until the stimulant has kicked in at which point she gets dressed and ready for school. Then she takes a booster after lunch. This is the best way we could get her to eat before the medication suppressed her appetite!

This plan was created in collaboration with our daughter’s psychiatrist. She has tweaked the timing and the dose of adderall that my daughter takes and we all discuss eating and nutrition together when we meet. Because the other issue is that even if the kid isn’t experiencing hunger - if they aren’t eating enough that decreases focus too.

One more thought, don’t confuse high fat with high calorie - ADHD dad’s suggestion of ice cream is spot on. It’s good because it has some protein and fat and sugar! Some doctors and nutritionists will suggest adding avocado to everything and avoiding carbs - but too much fat and protein will actually suppress appetite (if you think of Atkins or the Keto diet.) So we do a lot of whole wheat waffles, ice cream, mashed potatoes, whole wheat pasta and so on. Good luck!

[DoBetter]

The problem is amplified that not only does the medicine suppress his appetite on top of that he is a real fussy eater. He doesn't like avo at all. I will definitely try the ice-cream suggestions and am trying to give him past with some sort of protein as opposed to jus the instant noodles.

Thanks for all stories, it gives a strange sense of you are note alone in all of this

[slnf1488]

Hi, my son also experienced appetite suppression and lost weight with Concerta. He now takes Cyproheptadine, which helps with both appetite and sleep. He .

[JP2andE]

If you aren't and you can speak with a psychologist I would recommend it for both your sanity. Anxiety is tough. We went to a behaviorist and worked through a lot of issues with my son. From fear of dark, night, dentist, haircuts. She taught him coping skills. With kids with ADHD what I have learned is you have to give them a reason, they have to know the why behind what they do. My son is now 21 and he still needs to know the why. Battling with him to do his homework is just going to make both of you angry with each other. Maybe try making it a game. Here are your math problems, here are mine, let's see who can get done the fastest with the most correct answers. I used to massage my sons feet at night to get him to relax and he would share what happened in his day and open up as well as get him settled down. Worth a shot and it doesn't cost much, but a little lotion.