Medicating Children with Additional Needs
I have mixed feelings about medicating my child.
As I have discussed previously, my son has various issues, ADHD, High functioning Autism, Tourette’s Syndrome and OCD to name a few.
To me though, he is just my boy, with quirks! Or that is how I saw it for the majority of his younger years.
As he gets older (he is now a 13 year old teenager), he is more self-aware and understands that his issues are causing him problems with making and keeping friends. He is also frustrated that he can’t produce the same amount of work as the other children around him at school even though he feels he knows the answers to the questions being asked of him, but can’t put it down on paper.
He decided that he wanted help from the doctors to change his life, hopefully for the better.
With this in mind, for the last couple of years, we have been pushing to get him seen by a paediatrician for medical help.
Medicines however are serious and shouldn’t be taken lightly. They alter the chemicals of the body; in Owen’s case, specifically the brain. I am not sure I like the idea of his brain being altered. I always said when he was younger that I would not medicate my son, I just wanted extra support for him in his lessons. But now he has decided he wants to take medicine to help, so I agreed.
The hardest thing is deciding which issue to treat. OCD is treated with antidepressants, ADHD with stimulants, Tourette’s with blood pressure meds! They are all so different, how do you choose? Well, we decided with the help of the doctor to try and treat the issue that was causing the most problems in his life right now, which is the ADHD. ADHD causes issues with temper and concentration, affecting his school life dramatically.
We started out on our medicinal journey with Methylphenidate Hydrochloride, a powerful short acting stimulant. This was taken 3 times a day at 4 hourly intervals, the first dose being at breakfast. After a few days, he started to have manic moments and at one point he had a serious crash and started talking about suicide! At this point I took the decision to stop the medication immediately. I took him to hospital as he was in such a mess emotionally. They admitted him for observation and after a 36 hour assessment, they deemed him safe to come home and it was decided that he had experienced a bad reaction to the medication.
Back to the doctor we went. The doctor decided that we should try to use the blood pressure meds next as they can help to calm people down, helping some with ADHD and also Tourette’s Syndrome. Surely this would be the perfect combination, right? Wrong! These meds caused serious dizzy spells and he had a black out at one point due to the low blood pressure.
Back to the doctor! We are now on a medicine called Elvanse. It is a long acting stimulant. So far, we have had a really good response from it, although the first couple of days were a bit iffy. The first day he was high on life! (Very worrying from my point of view as you have to remember these drugs are stimulants, ie speed!). The second day he crashed. But by the third day, he levelled out and has been great on it for a couple of weeks now. He has been able to produce work at school, achieving an award for the amount of work created in his English subject.
On the weekends we do have to make sure he wakes up early and takes it so that he isn’t struggling to sleep at night. He is still a typical teen and likes a lie in on the weekends so this is something we have to keep on top of. I am unsure if they can have a break from taking the meds on the weekend, I have seen posts online where people only take the meds during the weekdays when they need to be able to concentrate and have a break when they don’t but I will need to clarify this with the doctor.
We are going abroad next week for a holiday and I have been told that I need to get a letter from the doctor about the meds as they are a controlled drug which could mean I would be arrested if found to have them on my person without proof that they are prescribed for my son! I have requested a letter from the hospital, but it hasn’t arrived yet so I am nervous about this.
How do I feel about medicating my son now? I am still in two minds about it. I think he could be helped in other ways if he had extra support in school, but due to financial restrictions they say that they cannot offer this to my son. I have home-schooled him in the past, but he prefers to be in a school environment with his friends, so I have let him choose for himself. He is 13 and knows his own mind. The meds are definitely helping at this point so I am happy for him to continue with them, however I keep a close eye on his behaviour as I have seen first-hand just how dangerous they can be.
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As an adult with ADHD, I take adderall to improve my functionality. It does sound scary to think of them altering brain chemistry, but you have to remember that my brain, and the brains of other ADHD people (like your son) are structured differently from yours, and so we really do need the extra help sometimes!
That said, his bad reactions to the first couple meds sound really scary. I'm glad you all found one that works for him now, and it sounds like his school work has already seen a vast improvement—hooray! I was diagnosed as an adult, and the difference that diagnosis, accommodations in school, and medication have made to my life is really amazing. If your son chooses college, most schools have pretty great accommodations for ADHD, so he might be able to achieve even more in higher education. Hopefully things will keep improving for him.
I hope you have a great trip!
Thank you! It really is great to hear from adults with ADHD who find that the meds help as it is such a worry medicating your child. I did find it strange that stimulants would help to calm him down but as you say, his brain works differently and reacts differently to stimulants, and I guess that is they key to the meds working. I am so happy that they have changed your life for the better and I hope that the positive experience continues with my son too. I know he can do great things if he sets his mind to it and if the meds help him to acheive his goals then I am happy for him to continue with them. thanks again for your insight, I really appreciate it! :)
I have been there. We Tried everything before medication, we ended up trying it. Once taking it she calmed ALOT, She had friends, was invited to sleep overs, friends came for tea. The medication helped her fit in, she was happier. We didn't give her meds on a weekend we let her be herself and blow of some steam. We Did find the med suppressed her appetite all day but then at night she ate non stop.The meds gave her some normality back, you do what you have to for your child.
absolutely @karenb54! I am prepared to try things if they help him become the best version of himself, especially as he is the one who wants the help and he is mindful enough to make those decisions with a little help from us too. Yes, I have also noticed the lack of appetite during the day. I have started giving him the meds after his breakfast to make sure he is eating before he goes to school. Unfortunately I can't keep track of him at school, but he says he is eating. Obviously when he gets home after school, I can make sure he eats his dinner :)
At night we made sure we had lots off things she could grab and eat. Plenty of cereal, chopped carrots, milky drinks. She filled up at might then didnt eat through the day, we found it worked then at the weekend she was free to do what she wanted. It worked for her :)
Yeah, appetite suppression is a problem with stimulants. Sounds like you found a good solution, though!
Thank you. It gave her a childhood with friends otherwise she would have had no one. She's 25 now and doing great. :)
That’s wonderful. :)
That really is great :D
Your post was really insightful as it gave me a perspective opposite of mine. I'm in the last year of my pharmacy education, and have been working for almost a decade in the field. I'd like to say first that I agree with the majority of what you've said; these drugs are serious with effects that shouldn't be taken lightly, so you're right to be hesitant. But there shouldn't be any remorse for having to resort to medication use to control an issue as a last resort, that's what they are there for.
As for the issue with not taking them on the weekend; because of the type of ADHD medication he's on, It's not recommended for him to go off of it even for a few days. As you said, since it's an ER formulation, it takes longer for his body to have steady levels (could be the reason he was feeling great the first day, then down the second). This could cause him to have those feelings every time he gets back on it after a weekend off. So in a way, it's best for him to stay consistent with his therapy, until he's ready to go off of it entirely.
Last thing I'll say, I hear stories like yours all the time while at work, you're definitely not alone in this situation. But that also means there's a magnitude of resources for you to help you with your decisions.
Thank you so much for your response! I am glad you told me about the break issue, I suspected that could be the case which is why I have continued him on it, but there is so much info on the internet that it is hard to know what to believe. Great to hear directly from someone in the medical profession about the scientific effects of the drugs.
As for the remorse, I think it is more of a feeling of hoplessness from a parent's point of view. We try so hard to protect them from all the bad things in life (drugs included) and then having to resort to something we are trying to protect him against just so he can function in society feels almost like we have failed him. I know this doesn't make sense from a medical point of view, but any parent will understand what I mean by this. Thank you for your kind words, you have certainly helped me to come to terms with our decidion to medicate, just that little bit more :)
It may help if you don't think of it as failing your son, think of it as society failing him. The school doesn't have the resources to provide him extra support, and schools are structured in a very rigid and specific way that doesn't work for everyone. These external pressures are not your moral failing—you are doing the best you can in a tough situation, and that's all anyone can ask.
Yeah filtering all of the information is not easy anymore, and I doubt it'll ever get easier. Thankfully though, most doctors and pharmacists are a call away :)
I'm a fairly new parent (3 year old) and I can relate to wanted to protect them from everything, but I haven't had to make the kind of decision you've had to yet. Even with my background, I doubt it'll be any easier. I like to think that we have several options to help most medical issues (from exercise, diet, meditation, drugs, etc.), and even as a future pharmacist, the drug option should almost always be the last option. But just because we're at that option, doesn't mean we've failed our children, it means we have more work ahead of us to ensure the medication stays safe and effective.
From the little I know of your story, I really hope this ends up being an safe/effective therapy for you guys. Trying to find something that works is always the most stressful part for a family.
thank you, I appreciate your kind words :)
I was that medicated ADHD kid, and I am that medicated anxiety adult. For me, medication was not a great experience. I was on ritalin, which was all that there was back in the day, and I compare it with a radio with reception problems. Ritalin turned my volume lower, making me less of a problem for teachers, but it didn't tune me to the right station. I still had the problem, but the environment didn't.
The way you handled it, with care, caution, and checking in, taking the kid in to the doctor as needed, is exactly the right approach, and I applaud you for it. The process of trial and error is one familiar to many of us who are on brain meds. It very much isn't one size fits all, and you gotta find the one that's right for the person. You are doing that.
Thank you @didic, it is great to hear the experience from your side too. I guess there are many sides to stories like these, the point of view of the child, the point of view of the child grown up into an adult, the parent and the doctor. So many things to consider! We have to have a very open mind and watch carefully I guess
I've had a really bad experience with psychiatry and drugs in general. I was diagnosed with "Aspergers" HFA at a young age. However I believe I did have Tourette's and not autism. I was at one point prescribed stimulants off label. I'd later be diagnosed with ADHD PI. Although a lot I bleive was stress at home and holding in my tics. School never went well. Along with a messed up sleep clock which they wanted to "reset"with stimulants. They made me spacey and on edge. Despite in the end my education not being complete. I found some solutions on my own that may help. I was diagnosed with Aspergers mainly because of an IQ gap. Poor Spacial reasoning. I ended up finding Irlen. Irlen can cause a lot of problems, or add them. Stuff included Sensory processing, attention, and learning issues. May be worth looking into. Esp since side effects. They help me a great deal. Many of my initial problems are non existent with them.
Much cheaper than a lot of of other support. There are programs that offer more individualized learning from completely self directed to just very supported teaching. There's also groups that offer help with school work for cheap or free. I've been thought a bit of the basics of Applied Scholastic from being in Course room at Scientology. Basically just a string emphasis on looking up words and getting feedback from their basic courses until I get it right. Not sure if a similar approach would help him. I also tic a ton. I really can't focus as well if I'm suppressing. Ironically sometimes I would overfocus to get my mind off if it. I got bad rebound effects from the blood pressure drugs. They handed me the pills while denying I even had Tourette's. I definitely needed to sleep a lot while my body was adjusting to them though and start slowly. Although I'm hoping I can overcome them someday. I hope your son is able to overcome his and get the support he needs.
wow! Sounds like you have had a really tough time! I am glad you found something that works for you. I have to say we stuck with the stimulants and his concentration levels are better in school, however the tics are getting worse and he is finding them frustrating to deal with. It is hard to know what to do as a parent. The doctors have tried every medication licenced for ADHD now and they all have side effects. I worry that if I try to self medicate him, I will do more harm than good, also the added worry of going to prison for illegally drugging my child of course lol Even though I know there are things out there that would possible help him, I am not allowed to use them according to the government. Apparently they own our children and our own lives.. sigh :(
Thanks. Lol, self medicating isn't great. Have done a bit with supplements and drink from rebounds with the psych drugs ESP. Lol glad the filters for Irlen syndrome don't have side effects like those. Sounds rough though. Haha they are very happy to give out their own drugs. Even threaten legal to remove some. Not sure what drugs you mean.
I think any legal supplement is fine pretty much or OTC. I'm not too versed on helping attention problems, or even tics which is one of my main problems. Looking into nutrition in general and hoping to find answers. Tend to keep to myself a lot fear the mental coprolalia will turn into actually coprolalia again. Sorry it's so hard now. Wish had a good solution, but I've mainly been at a loss.
You really have to do what is best for your son and really that means listening to him and what he wants, this exactly what you are doing. I am not a fan of any medication, but then I am not your situation so I really can not advise you only to keep listening to your son and your heart. I know you are trying your best and it most be very challenging. I wish you all a lovely holiday and thank you for sharing your experience with us all.
Thank you @trucklife-family, I hope you are feeling better x
I really appreciate that you're letting your son take the lead on this. It can be so hard, as parents, to hang up our own. . . well. . . hang ups and do what we can to support our kids.
yes it is hard and I have to keep reminding myself that it is his life, but I am still responsible for protecting him so there is a very grey area :/ thank you for your comment :)
You are doing a wonderful job 😁.
thank you :)
mother's love... good luck to your son!
thank you, yes a mother's love is unconditional :)
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thank you so much :)
That's quite a few things with conflicting meds that need attention x_x glad you've found something that works so far.
thank you @ryivhnn, it seems to be helping at this point, but I still watch very closely :)