hesitantly considering adhd meds...

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Been a while since I visited WP... hello.

We had lots of ups and downs last year, I guess as is normal...for anyone!
Our biggest challenge lately has been my son's impulsivity and compulsive behaviours he just can't control. I won't go into too much detail, but the types of behaviours are definitely related to ADHD (he hasn't been officially diagnosed with that as of yet, though from all the reading I've done, it's obviously an issue). He's such a sweet and smart kid, but because we have to reign in his impulsive behaviours so much it's having a very detrimental (disastrous) effect on our relationship (usually pretty good), family dynamic (also usually pretty great), and, importantly, my son's self esteem. I know he can't control some things he does, but mostly for his own safety as well as to maintain a level of appropriateness in terms of behaviour in public and within our family setting, we do end up having to try to contain his compulsions and this leads to his anger, sadness, resentment, and general on-going problems between us. We are so accepting and supportive of him, and have always been- I feel like we've hit a brick wall with this and things aren't going well.
He's said things lately about feeling like he's a "bad guy" and it breaks my heart.

I've read about a lot of people and parents saying how meds were life-changing etc etc for them and the positive effects over time on self esteem and family dynamic, and this is my main motivation in considering ADHD medications.
I hesitate because my son is so young and how side effects on his anxiety, sleep, appetite (all long-time issues already). Generally, I am hesitant about psych meds but I always keep an open mind and my main concern is my son's well-being and happiness and that of my family.

Just looking for some input, advice and thoughts here.

Hello. I don't know if this will help you or not, but I will share my experience. My son was diagnosed with Asperger's when he was five (he is now 11). When he got the diagnosis the psychologist told us the decision to put our son on medication should ultimately be made by us and not to let anyone else influence our decision. He then added we should only put him on medication if his behaviors or lack of concentration affected him in school. Well when he was in the third grade his teacher commented he wasn't doing very well with concentration. He was also becoming easily frustrated with the most simple tasks. This combined with his every increasing need to recite things over and over made us wonder if we should put him on medication. We actually sat him down and told him about our concerns. I asked him if there was something he could take that would help him concentrate and be less frustrated (I compared it to him taking his vitamins) would he take it. He was shocked and happy to know there was something that he could take to help him feel better. He was very excited about it. He had also told us that he felt like his brain was moving very fast. All of this helped us to make the decision. As a parent I really wanted to wait as long as a could on medication because A. This is a growing child and B. I don't know what its like to live in my son's body, and I really wanted him to give us some sort of indication that he wanted to pursue this route. When we went to his pediatrician he was shocked we had waited as long as we did to put our son on medication. He told me most parents who have children on the spectrum put them on medication a lot younger than nine years of age.

We only give him enough to get through the school day and we do not give him anything during vacation or on the weekends. I realize there are always going to be things "different" about my son, and I could handle all of his "quirks." I didn't want to change his personality. I just didn't want whatever is going on in his brain to prevent him from doing his school work because academically he is smart enough to do everything his peers can do. Does that make sense?

The best advice i was ever given at the beginning of this journey was.. "You are the expert on your child. Other people/professionals can give you their opinion on certain things, but ultimately you need to make the decision because you know your child the best."

I don't know if that helps. I wish you luck with your decision.

The difference was night and day with my nephew. The first medication tried aggravated his symptoms, but he now can focus enough to learn in school.

We're holding out, but I wouldn't ever rule it out entirely. It can be a really hard decision. I think if you think that the scaffolding is not making enough of a difference and it is impacting your son's self-esteem and his relationships, I can see why you are considering it. These are the important things you need to protect.

I think the main thing is to just to make sure that you trust the doctor and his/her judgment. There are people who say meds were great for themselves or their kids, and there are people who say it was a nightmare. I think you need to trust that if something is not working or if you are not comfortable with an option -- that the doctor will respect your input and not try to push you where you do not want to go.

Thanks for the replies. This will help me think things over. Some other advice I received that's helpful is that we can always decide to stop the meds if we feel they are not working or making things worse. Somehow this hadn't crossed my mind as I keep feeling like if we make this decision it is crossing some sort of line...or something.
I've tried to approach the topic with my son and will try again. We homeschool and when he seems extra distracted or fixated on something I ask him about what he's feeling or thinking. A while ago he said "I can't stop dreaming, mom" (we were doing math, which he likes a lot and he appeared to be frustrated with himself so I asked why. He meant "daydreaming" I'm sure, not dreaming at night) and asked him what are you dreaming about? He replied that he couldn't stop dreaming/thinking about "10 deadly plants" a video on YouTube about one of his special interests, carnivorous plants. I asked him if he wanted to stop dreaming about it and he said "Yes I really do! I want to do math now" . I asked him if it feels like he can stop thinking or dreaming about it and he said he can't.
Because we homeschool I can make accommodations, he can fidget and bounce and take breaks etc and really he is doing well in terms of progress academically. That's not our issue right now, But he is noticing his own inability to focus on what HE wants to and it just adds to his many frustrations I think. It's the same in other situations- he really wants to stop doing the impulsive things that he knows he's not supposed to but just can't. I see him becoming a bit more aware of all this, and awareness is a good, big step but it's bringing him down on himself.

Anyway it's hard to find good doctors to work with where we live, but I guess we will try as we take the first steps into this. From some reading I've done I think strattera might be ok for him to try? It's nice that it is not a stimulant and also can be beneficial for anxiety. Anyone have experience with Strattera?

Yeah, I know it seems like the Rubicon, and if you cross it, you cannot go back. We have the same issues with not having a lot of resources and choice where I live. We were initially referred to a psych doctor, for diagnosis (a train wreck story for other reasons) and boy did that guy love meds. Even though he acknowledged our son did not need them at the time, he really did want to plant the notion of using them in the future and it really scared me how enthused he was, and I think it is b/c that is his only competency.

I think it is really important that a doctor is willing to stop trying meds if they don't seem to be working and the parents wants to stop trying. Some of the side effects can be very problematic and I don't think I could withstand endless trials.

I hate anything that is trial and error and hit and miss, and then if you combine that with a doctor who is overly enthusiastic about meds, that scares me, personally.

The reality IS that you cannot depend on being able to "go back." Hopefully this will not happen to your child, but medication side effects can indeed cause permanent damage that does not go away when you stop giving the medication. This doesn't mean you shouldn't consider medication, but the risk is there.

Also, asking your kid something that is essentially "what if there was a magic pill that made everything better?" is disingenuous. Yes, this may make you feel better about the decision, but unless you have managed to convey the risks and dangers as well as the possible benefits, the child is really not participating in the decision, and if you have managed to get these details through to the kid and he/she has weighed the pros and cons and come to a conclusion, it sounds like the kid must be pretty functional sans meds.

Well, I don't think the question is as useless as you think. She didn't ask him if he would want to make his problems go away, would he take it. She asked if he could take a pill and focus on his subjects would he take it. If I were to ask my son that, I am sure he would say, "no," because he doesn't think that being distracted is an issue. He likes going off on tangents, unless he were to be yelled at or punished, and then it would be the yelling he didn't like not the mental meanderings.

So what she discovered is that he wants to do his scheduled math (favorite subject) but he feels a compulsive need to follow his tangential thoughts. That is useful information. Do I think that is the only thing to consider? Of course not, but it is useful to know.

I didn't say it was useless, I said it was disingenuous. In fact, it may be useful, as you can bring it up later if they suffer from side effects and blame you for putting them on the medication in the first place. If they think that they played some role in the decision, maybe you can be off the hook.

I suppose it can also be useful for enlisting their cooperation in taking the medication. Making people think they have chosen something does lead to increased compliance. By listing only the possible benefits (and pretending that they are not just possible, but are going to happen if he "chooses" to take the medication) and none of the potential risks of long-term harm, there is no chance for the child to even attempt a risk-benefit analysis (and if the kid really is capable of performing such an analysis if provided with the information, he/she is already significantly ahead of most adults, considering that the average American household apparently blows almost $700 per year on lottery tickets).

And sure, maybe a kid doesn't care if they get distracted, but are they really distracted or just thinking about whatever they please? The child was asked if he wanted a pill that would help him "concentrate" and be "less frustrated." No one wants to be frustrated and if adults are always on your case to "concentrate" on what they want you to concentrate on, the real question becomes "do you want to please us or not?," which doesn't address the problem or whether there is one that can be helped by medication.

My older, non autistic child has ADHD. He is on the mild/ moderate side. I am holding off on medicating him. I am not against meds, in general, but, in my sons case, feel I need to exhaust all other avenues first. Here is my reasoning:

1. My son is below the 3rd percentile for weight, and the 5th percentile for height, and has a condition that causes food absorption issues. I am hesitant to give him anything that could possibly suppress his appetite or stunt his growth.

2. My son is incredibly creative. He draws, writes stories, makes projects constantly. I have a few friends (my age) who have been on/ take ADHD meds who say that, when they are on the medication, it stops their creative flow. One of these people is a poet, and can't write poetry at all while on medication. She takes it on the days she works in an office.

3. My son's ADHD does not affect his social skills or, seemingly, his self-esteem. If I felt that his self esteem or ability to make friends was really impacted by his ADHD, I may consider medication.

4. He is not bouncing off the walls or disruptive in class. He has, primarily, the "inattentive" type. He is not making it hard for the teacher or for other children to learn.

5. Behavioral modifications seem to be working for him. He is allowed to doodle in class (helps him pay attention), has fidgets, is allowed to take breaks and walk down the hall, etc. He has organizational tools. I feel he is making really good progress in managing his ADHD symptoms, and I believe it is valuable (for him) to learn these tools himself, rather than take medication to eliminate the symptoms. Assuming (if I chose to give him meds) he may not always be on medication, I think he needs to learn these skills.

If I felt my son was unhappy, isolated, self loathing, etc. due to his ADHD, I might make a different choice. But, not taking meds seems to be working fine for him. If he makes a different choice later to take meds, he can do that.

Thanks for the additional replies. I'm still digesting.
It seems my post about asking my son about his "daydreaming" has been conflated with another poster's experience in asking her son hypothetically about medication. I haven't proposed a "magic pill" to my son or any such thing, just asked him about what he is thinking and feeling.

I was addressing her advice, not saying you had done it.

Oops, sorry, I read the response above mine and assumed it related to your post, and I am terribly forgetful. I should know better and check first.

ASDMom, it's ok. I just felt the original contents of my post were being confused a bit, not just by you. It doesn't make much difference, so whatever, I just wanted to be clear. I found the other poster's comments (about asking her son hypothetically about medication) were helpful too, in any case.

I just spoke on the phone with one of the doctors we are considering going to. She graciously spent a long time listening to my rambling (I'm even worse talking to people IRL, lol). She said in addition to medications, we should consider CBT. And I've often thought my son could benefit from therapy/counselling to address emotional issues, as these are getting more challenging and complicated as he gets older. But I don't know how this would work with him- he is very verbal but also still very echolalic at times, especially when the topic is about him and emotions and complex things like that etc. When anyone speaks to my son and asks him factual or similar things, he can answer no problem. But try to have an on-going conversation or talk about feelings, emotions, frustrations and similar issues and he disappears into his echolalic library, that even we, knowing him so well can only sometimes make sense of. Or just bringing up topics such as these sends him into an emotional tailspin or complete evasion maneuvers. I just don't know how any kind of "talk" therapy would work with him.
We read social stories and books about feelings and problems etc, and he can answer clearly about the characters in the books or stories and go on about their feelings and everything, but try to connect it to HIM and talk about what's going on with him and it's game over.
It's rare that he can clearly verbalize his feelings in ways that we can understand. We know him so well that a lot of the time he doesn't HAVE to verbalize what's going on, because we can guess pretty well. But a doctor or therapist? I don't see that happening.

Anyway... this is what's turning over in my head after talking with that doctor about meds and therapy.
Some things seem to get a lot easier as my son gets older, but other things are growing extremely complicated. I just want him to be happy and also feel supported and loved.

I have this to add: my husband and I recently put ourselves on medication, and I will say that the result is life-changing. We've decided to explore the possibility with DS, and have set up an appointment. I'm glad we were able to wait until his mid-teens to do so, but at this point it seems like he can't take in other interventions due to the anxiety.

An important thing to know: there are medications and medications. Most of the stimulant-type medications either work or they don't, and get out of your system fairly quickly. IMO, they are worth trying (and FWIW, we've explored them by starting with caffeine for DS, while explaining carefully how it works, what it does, and what symptoms to look for - over-stimulation, excitability, a crash after it wears off, better focus, etc. We used it to help teach him to self-report, a VITALLY important skill if you're using meds, IMO. Caffeine works on the same systems as the stimulant meds, although it is obviously milder and short-lasting.)

If the stimulant meds don't work, you may need to explore other classes of medication (stimulants work for DH, but for me, we found a combination of the smallest possible dose of an SNRI and an NDRI works.) Those have this major complication: typically the side effects happen first and it can take over a month for the positive effects to show up...and until then, you won't know if it's the right medication or not. It's taken two years for me, working with a doctor, to finally find the right combination.

I think, also, it's worth noting that in addition to hypersensitivity to the world, I think kids on the spectrum are hypersensitive to meds (at least if I am any indication.) Find a doctor who is willing to work with you on starting with what seem like ridiculously small doses (my current psych allowed me to cut one of the saccharin-pill sized tablets in half, and even suggested we might find a way to do a quarter dose.) Make sure your doctor is willing to listen when your child reports it is WRONG (I am much better at telling when something will absolutely not work than when something may or may not work.) It is worth keeping track of which medications work on which neurotransmitters, as that is the major difference between them and often the difference between the "right" medication and the wrong one; keep in mind that most affect two neurotransmitters if not three, so track that along with side effects and positive effects - fyi, a very common side effect is constipation; fiber pills, drinks or other supplements and believe it or not, prunes, are important. One magic word to know and to teach your child: "emotional blunting" (I get this on SSRIs - it's like nothing gets in good or bad, like you're surrounded by pillows or bubble wrap; it's not good.)

Lastly, check out the website http://www.crazymeds.us/pmwiki/pmwiki.php/Main/HomePage I have found more frank, accurate information there than anywhere else.

Don't let anyone tell you what is right or wrong for you or your child: you know them better than anyone else. I used to be very judgmental about medication, and I still think it should be a last resort - but I think as a group we are pretty attuned to when we've arrived at "last resort," and it is much sooner than many folks think. It's not necessary to make our kids (or ourselves) suffer just to prove a point about due diligence - if you've done your due diligence with other interventions, it's been done; you don't need to prove it to anybody.

Good luck!

I have read about experimenting with caffeine, but never tried it. I don't want to introduce soda into the house and he wouldn't drink coffee I'm pretty sure, even in the form of some heavily sweetened espresso drink.
It's interesting because I was just talking to someone who is becoming a health nut recently and is trying to get her brother to stop drinking coffee- he has ADHD and he said he drinks about 6-8 litres of coffee a day! It's the only way he can function without meds. I think she decided to stop pestering him about the coffee when she learned it helped him stay off of (prescription) medication...
I'm not sure if I have adhd but know I function much better with lots of coffee as I can be very dreamy/spacey myself. Red bull makes me feel really good too.
Thank you, momsparky, for the info about keeping track of which neurotransmitters are affected by the meds etc.

We have been trying to increase iron, magnesium and zinc in his diet and with supplements, but haven't noticed any change. He's also been taking fish oil forever. He gets a ton of exercise- probably a lot more than he would if he were in school. We are outside for hours a day, he swims, he climbs, he runs, trampolines, he has a little sister to chase...everything. We are not successful in eliminating sugar from his diet because his diet is so limited as it is. I feel like we've been trying almost everything available to us except medication and have been unsuccessful.

A fear I have is that we will get more diagnoses from a psychiatrist than we are ready to deal with and then the resultant pressure to medicate and start therapies we have tried already or decided against. In addition to ADHD I wonder and worry about depression and ODD, even schizophrenia in my son. I don't want to go and open up a hornet's nest, but I also don't want to leave my worries unaddressed and my son's health unattended to. One reason we don't like doctors here (even general physicians) is because they tend to "cover their bases" with lots of diagnoses and meds. I've left the doctor's office many times with unnecessary antibiotics for example- they say take them, "just to be sure" etc. I think it is partly a cultural thing that I've noticed in developing and non-western parts of the world- overusing medications and procedures I mean.

Sorry for the tangential post again. Thanks as always for your input and experience.