The Why We Medicate or Do Not Medicate Thread

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In the last thread where the medication topic came up, someone wisely noted that the best thing we can all do is simply share our own stories. The decision can be a mine field, where parents face damned if you do, damned if you don't, alternatives, and the best any of us really have is our gut instincts about our own child.

So with that in mind, I thought maybe we could start a new thread to simply discuss what works for our own unique families, and why we believe it works. Create an unscientific data base of personal stories to help other families, or families in the midst of changing circumstances, sort out what might apply for them. All while being very careful not to comment on or judge each other's choices.

If that sounds like a good idea, please post.

I'll come back and do our story later.

EDIT: to keep the thread as clean as possible, it might be best if we contacted each other in pm when someone posts a story that doesn't stick enough to being a personal story, give the poster the opportunity to edit it. It can be hard to stick to the goal on such an emotional topic, and I know that is true for me, but I would hope that everyone posting in this thread WANTS to meet that goal.

Last edited by DW_a_mom on 06 May 2012, 1:17 pm, edited 2 times in total.

Good idea.

My daughter is almost 9 years old.

She was head banging even as a small toddler. She would hold her breath until she vomited. She panicked anytime she was in a car. She had chronic stomach aches. She was fearful of people and selectively mute.

She was referred to ECI at 2 for being non verbal. They said she was not autistic, just a late bloomer.

Around age 4 she was referred to a family therapist by her pediatrician. That therapist told me to hold my daughter in a bear hug until she calmed when she went into a meltdown. After several hours, being peed on, and being vomited on my daughter NEVER calmed down. She passed out in exhaustion. I knew there was something "different" about my daughter.

After several visits with the therapist, he stated there was something "medical" going on a referred us to a developmental pediatrician.

That developmental pediatrician, around age 5, diagnosed my daughter with an Anxiety Disorder and Developmental Dyspraxia. She prescribed Paxil at a very low dose. At this time my daughter was not doing well in preschool. The Head of the school stated she had "never seen a child like" my daughter.

Within months of starting the Paxil my daughter violently attacked a peer and put her hand through a plate glass window. This was an extremely disturbing meltdown that started because this boy was leaving and did not say goodbye. She attacked the boy from behind hitting him several times, then turned her attack on herself, hitting herself in the head, tearing her clothes off, and screaming that she wanted to die. This was at age 5. When I placed her in her room to calm down, she put her hand through her window while banging on it. It took several hours for her to calm down. After that, I weaned her off the meds.

The next year my daugter was doing poorly in private Kindergarten. The teacher complained my daughter didn't listen, didn't respond, stood in her chair, was constantly in motion, and the teacher was worried about the safety of everyone. The Dev Pedi tried Ritalin. At this time my daughter became unresponsive, was extremely irritable, wouldn't let people touch her, and started withdrawing into her shell. They then took her off the Ritalin. We were referred to a Neuro Psych for evaluation. There was a 9 month wait...

Meanwhile, I moved her to public school Kindergarten as I was told the public school would know better "how to handle her". The Dev Pedi gave a report with recommendations for the school. The school quickly moved her up to 1st grade as she was advanced academically. The selective mutism became severe. The teacher would bribe her with candy to participate in class. The public school evaluated my daughter and stated she was so far advanced academically, she didn't need Sp Ed. Her anxiety became severe and she began refusing to seperate from me at school. The Dev Pedi prescribed Zoloft, low dose.

At first the Zoloft helped. The anxiety got a little better. But then I started noticing my daughter pulling out her eyelashes and hair. She began tapping objects ritualistically. She began counting everything. Things stopped "feeling right" unless she did them a certain way. She gained some tics, or stems, or whatever they were-she began flicking her wrists all the time. She was on Zoloft 6 months when she violently attacked another girl at a pizza place. She just started hitting and kicking the girl with wild abandon. I physically removed her and drove home with her punching and kicking and spitting at me in the car. It took several hours for her to calm down. She was 6 years old. We weaned her off the meds.

We then had the Neuro Psych appts and she was diagnosed AS and Dev Dyspraxia. She was referred to a psychiatrist. He wanted to prescribe respiradol. I refused.

I joined WP about this time. I didn't understand AS at all and refused to believe it was a correct dx. Over time, adults with AS here at WP began to converse with me via PM. I would ask them questions. They would give me their opinion. Her OCD behaviors slowly diminished. They were almost completely gone 9 months after stopping the Zoloft.

Over time, and through great effort and struggle, I learned from 2 adult Aspies here on WP (and probably several more through reading posts) that focusing on the BEHAVIORS was getting me nowhere with regard to helping my daughter. Through many months and many writings they showed me that I needed to look at WHY the behavior occurred to begin with. Each time something happened that I felt unable to understand they guided me in looking at the REASON behind the behaviors. Sometimes figuring it out took months. Sometimes I tried work arounds to narrow down the cause.

For a while, I walked on eggshells fearing my daughters rages and meltdowns. After a while I realized I wasn't doing her any service by making her world so ittitation free. She would have to learn how to face adversity. Slowly I began adding expectations. VERY SLOWLY. For a few months we worked solely on getting her to dress herself. She still doesn't ALWAYS do it but she does most of the time. For a while we worked on toothbrushing. One by one, we worked on skills. When one was mastered, we'd start another.

That was the key. With AS, it sometimes feels all-or-nothing. But it doesn't have to be that way. You can make progress. Sometimes it's two steps forward and one step back. Sometimes it's 3 giant steps back. But slowly things get better.

I had to realize that my daughters behaviors were mostly reactionary. She wouldn't come out and say "my stomach hurts when I ride in a car" but over time I figured out she was having vestibular and proprioceptive issues with riding in a car. It made her feel sick.

She would get negative associations with things. Instead of telling me, she would just start getting anxiety. When I didn't recognize the anxiety and address it, she would become irritable and have a meltdown. I began recognizing the chain of events. I began trying to figure out where the negative associations began. It took a lot of time and energy. Sometimes it took months of things getting worse before I figured out what the problem was.

My daughter is medication-free. We did change her diet to all natural, no preservatives, no dyes but she also can have treats on occassion. She does have difficult behaviors sometimes. She struggles with debilitating anxiety. But she's better. She's back in a private school that understands her because I realized the public school didn't care-she was just a statistic for them. She's doing well academically. She has a few friends. She talks to me. She knows she has Asperger's. She knows it gives her strengths (like an amazing memory) and it also gives her weaknesses (like sensory issues). She hasn't said she wants to die in over a year.

Looking back, I owe all of our progress to the 2 adult aspies on this board that took the incredible amount of time to help me and my daughter. Wrong Planet is the place where our children CAN have a voice-if you listen-the voice is the adults who have been there, done that and can give us the unique perspective of what our children are likely to be thinking and experiencing. Not all of the adults were the right persepective for me and my child. But 2 in particular helped us tremendously.

I didn't medicate because of what they told me. And I am so thankful to them for showing me how to understand that how my daughter acts and reacts is due to the different way she experiences the world. Once everything I did started with that basic foundation, that principle, things got a lot better.

Mama some of the stuff you said is true for us too and well put - "She would get negative associations with things. Instead of telling me, she would just start getting anxiety. When I didn't recognize the anxiety and address it, she would become irritable and have a meltdown. I began recognizing the chain of events. I began trying to figure out where the negative associations began. It took a lot of time and energy. Sometimes it took months of things getting worse before I figured out what the problem was. "

I try to explain to teachers and others that when DS has a problem with something his behavior comes out "sideways". It is sometimes so hard to connect the behavior with the thing that is causing it but reading on this forum and carefully observing my son I now know for certain that there is a cause and I just need to figure it out.

So, to address the topic more directly, we don't medicate I think mainly because the only thing my son has been diagnosed with is ASD and I firmly believe from all the research that I have done that there is no medication that can treat ASD. I feel comparatively lucky that we do not suffer with co-morbids that make dealing with ASD so much more difficult.

We decided to try medication because my son was having manic episodes during which he was completely unreachable. He would act drunk, with this horrible maniacal giggle that I still shudder to remember. He would stim on potty words and on anything else he'd ever been told was inappropriate behavior. One time he was sent to the principal's office during one of these spells and spend the whole time chewing on the furniture. We couldn't go anywhere or do anything for fear of his attacks. Our lives were utter s**t.

Medication gave me my son back, with his smart and funny personality and his wonderful, genuine laugh. It gave all three of us our family back.

we have three autistics in our immediate family: our oldest and youngest children, and my significant other.

K, our youngest, showed traits of autism and sensory dysfunction from birth. most of his issues stem from extreme social anxiety, sensory dysfunction (low registration, hyposensitivity to internal stimuli, hypersensitivity to external stimuli), low muscle tone, and a profound speech impairment. he was the first medically diagnosed in our family at the age of 4 with classic autism.

N, our oldest, has sensory issues, anxiety issues, had an even more profound speech impairment, executive dysfunction, and autism. he was one of those "we must be the worst parents in the world" kids until his neurotypical brother was born when N was 7 1/2, and we had proof it really wasnt just us. he was diagnosed through the school system at the age of 14, school just says generic asd but N fits the criteria of pdd-nos.

D, my SO, is the big version of K. they are like two peas in a pod, same issues. the pair of them defy the "if you've met one person with autism" mantra. D is the reason K was not diagnosed until 4, all those autistic traits were just chalked up to familial inheritance for the first few years. he was the last family member diagnosed with classic autism at the ripe old age of 39.

our children are not medicated at all. they have never developed any behaviors or co-morbids that necessitate drugs. we have used OT and ST to target specific issues, and we have done a LOT of adjusting expectations and ways we do things. schooling has been the biggest hurdle, both have IEPs, our oldest has always been mainstreamed but our youngest is pretty far out of mainstream. K is in a self contained classroom of kids 2-3 years older than him and has a full time aide.

D has tried a couple meds over the past year. currently he is not taking anything, but he readily admits that he needs to have some kind of mood stabilizer on a daily basis, we are just trying to find one that works and doesnt give him bad side effects. he went undiagnosed for nearly 4 decades, and the coping mechanisms he developed are not positive ones. he reacts with anger at slight provocation, literally raging over minor things like someone following too close in traffic. medication for him is to even out the wild swings and uncontrollable anger that is the result of decades of not understanding the world around him and his own reaction to it.

Thanks, DW - I think this is a really good idea.

Other than the occasional cup of coffee for caffeine (and we avoid other types because I'd prefer to stick with one DS thinks tastes kind of bad) we do not medicate.

However, one important thing I've learned from this board: at least from what I read, parents here who do medicate DO NOT MEDICATE AUTISM. They are medicating a co-morbid like ADHD, anxiety, OCD, bipolar disorder, etc.

Our own personal criterion for medicating DS was that if the violent outbursts/suicidal language reached a point where he was a real danger to himself or others (you know, beyond black eyes) that was when we'd consider it. We worked very hard with him so that we did not reach that point, but it was touch-and-go for a while there, and we still may have to revisit the idea. Our MO is to do absolutely every other intervention that we can come up with before we try medication, unless we reach the point of medical emergency.

There were some medications that were suggested, and after reviewing them I realized that I have different feelings about different meds. The ADHD stimulants, while they can have serious short-term side effects, don't have long-term effects (this is why we tried coffee; I thought why use a prescription when we can get a feel for a stimulant that's legal, free, and in my cupboard right now.) Some families I know experienced a night-and-day improvement with the ADHD drugs - so, if they would help DS, they are the only drugs I would consider. My experience with caffeine indicates that my child would not, in fact, benefit.

The other drugs scare the bejabers out of me (the mood stabilizers, SSRIs, etc.) My own personal experience with an antidepressant as an adult wasn't very positive (I felt like I was in a pillow suit. Nothing got in. Necessary for the state I was in at the time as it gave me a chance to breathe, but not a place to live.) I worry about the side effects. While I do believe there are very valid reasons to give kids these drugs, to do so I would need to be in an otherwise unresolvable crisis, and I'd need a third and maybe fourth medical opinion. That being said, I recognize the possibility of an otherwise unresolvable crisis.

When DS was 4.5, his preschool teachers asked me to come observe him in class for a day. He wandered the room, never staying at any of the activity centers for more than 2 minutes, climbed over furniture, fiddled with blocks without building anything, etc, etc. At home he was active but not hyper -- I read book after book of parenting advice and none of it seemed to work. I figured I just wasn't consistent enough and tried harder. We asked a child psychologist to observe him at preschool as he was being kicked out -- unfortunately they were doing something with test tubes that day that DS was very interested in, and he sat and focused on it for 20 minutes or more. The psychologist told us he didn't have autism or ADHD, and to delay kindergarten for a year and try a preschool with a smaller class size. He was having many meltdowns at the bigger one.

At the new preschool, the teacher happened to be a part-time nanny for a boy with AS, and she gently pointed me toward a book about AS she had found helpful. It was really about working with much older kids, teenagers, and didn't seem to fit my son. She said she thought he would need an IEP once he started kindergarten. I read and read and read books and websites about spirited children, challenging children, sensory processing disorder, ADHD, and Aspergers. Bits and pieces fit, but there was never an aha moment where I said to myself, "this is what is going on with my son." The closest fit seemed to be ADHD, although he wasn't "driven like a motor". Aspergers didn't seem to fit because he didn't have a special interest, nor severe rigidity, nor the types of repetitive behavior described in the books. (So what if he insisted on my pulling the lid off the toilet so he could watch the tank refill every time for six months? Obviously he was just inclined to be an engineer like mom and dad.)

As I read about ADHD, the non-medical accomodations seemed pretty wimpy -- preferential seating and a "secret signal" to pay attention? That just really wasn't going to make a difference in this case. Again and again I saw that the first line treatment for ADHD was medication. Even parents on ADHD boards described how they tried everything first and finally resorted to medication in the end, and what an immediate difference it made for their children. I became willing to consider medication -- but ONLY if DS truly had ADHD. I was very uncomfortable about the process to diagnose it -- questionaires sent to parents and teachers where they would mark "Rarely, Occasionally, Often, Very Often". How subjective is that! What if my "Occasionally" is your "Often"? Finally I was referred by a psychologist leading a parenting class to a developmental psychologist who would do 4 hours of testing (it turned out to be an IQ test and the ADOS). I asked her to evaluate for ADHD as well and she sent me the questionaires. I brought lots of additional information to the meeting -- emails exchanged between myself and the new preschool teacher about the problems DS was having in her class.

The developmental psychologist diagnosed DS with AS. His ADHD ratings were yes from the parents and a borderline no from the teacher. The psychologist told us DS might be diagnosed with ADHD in the future, but to try OT first before considering medication. So DS was enrolled in OT, speech (for pronunciation), and social skills class. The OT did a combination of sensory integration activities and working on handwriting. We followed her recommendations at home -- spinning on a chair in different positions, allowing DS to climb up doorways, allowing DS to jump on a particular couch, etc., but really saw no difference in his activity level. Ok, so he wasn't getting yelled at for jumping on the couch any more, but the jumping wasn't decreasing, either. After several months of therapy, I observed a session (usually I had to watch my younger children in the lobby) and saw that with incredible amounts of coaxing and motivation and earning gym time, the OT could get DS to work on handwriting for a full two minutes! There was no way his kindergarten teacher was going to be doing anything close. I asked the OT if she thought we should consider a trial of medication, and her answer was, "Actually, he might feel a lot better with it."

(During this year I was also attempting to teach DS the basics of reading. He would jump on the trampoline for 10 minutes then work for 10 minutes. It was exhausting, and althought he knew the sounds of the letters, he couldn't stay focused long enough to sound out "The cat sat on the mat.")

Still, I wasn't willing to have our regular pediatrician oversee a trial of medication. I wanted a specialist who had lots of experience in these cases. DS was also starting kindergarten, and I knew we had to give him time to settle in so we would know what improvements came from the teacher and what from medication. The first few months of kindergarten were a disaster. The teacher has a lot of inclusion experience and was always very upbeat about it -- she would pick one incident to tell me about each day, usually the most serious, then highlight some small positive development. I later learned from a school psychologist that there were 3-5 incidents worth noting on the special ed tracking log every day. We're talking screaming meltdowns where they would have to clear the other children from the room. The teacher went away for three days for training, and during that time DS had an incident where he threatened an aide and some children with scissors, threw a soccer ball at the special ed teacher's head, and couldn't calm down for more than two hours. The school started the process to upgrade DS from a Behavior Support Plan to the more serious Behavior Improvement Plan, which could ultimately result in DS being moved to the resource room or to a special school.

Luckily DH has learned that a coworker had a daughter with AS and ADHD, and got a recommendation from him for a very good developmental pediatrician.

[I'll come back and edit to add the rest of the story later...]

My son has always had behavior problems at school. Until last year, we chalked them up to his gifted intelligence. I've always suspected ADD, but never sought a diagnosis. During elementary and most of middle school, we were able to work with him and his teachers to develop strategies for dealing with them. Last fall, he started high school and was really struggling. His friend has ADHD and our son really noticed a difference in his behavior when his friend took medication. So, he asked if we could try to see if it would work for him. We did. Almost every day I asked him: how are you feeling? can you tell a difference? Every time it was the same: meh. So, this lasted until I found out that he had sold a couple of pills to another friend. I guess Adderall is popular among non-ADHD kids as a stimulant. Since I was not seeing a profound difference in his behavior (grades still bad, attitude still bad), we stopped the medication.

Fast forward a few months, I find out he had smoked marijuana. While it's a serious offense, I wondered whether he was starting the whole "self-medication" thing I've heard about. Then, he starts having more serious behavior; suicidal ideations and such. Last month we admitted him to a behavioral health hospital, where he was diagnosed with PDD-NOS. The psychiatrist prescribed an anti-depressant and said it may take 3-6 weeks for full affect. It's been about that long and I'm waiting to hear what his therapist recommends; much of my son's anger is directed at me, so it's difficult to tell whether they're working or not. He's currently in residential treatment. I'm hoping the two-prong approach works: intensive therapy and medication. My guess is that his issues stem more from his emotional and communication issues than from lack of focus and concentration at school.

For us, we have tried everything else: natural remedies, vitamins, out-patient counseling, various parenting strategies. If the current medication does not seem to be helping him, we'll take him off. I've never like medications, even for myself, but if they can help someone I don't see the harm in taking them.

I feel like my story here will be long, if it is going to be useful to anyone else, and hopefully I finally have enough time today to write it.

I'll start with me. I think that is important because our personal experiences do color how we see things for our kids. And for me - I like to solve life with a simple pill. At least until I've acquired reason to believe I shouldn't. Every day I take allergy medication and headache medication and chew on cough drops. So when I encountered lingering depression after my 2nd child was born, I went to anti-depressants. I had two children and a job, and I didn't have TIME to figure out another answer. I needed someone to throw me a lifeline and I grabbed it with enthusiasm. While I don't regret that decision per se, because all the factors that led me to that choice would still be there if I had it to do over, I am suspect of it. I have now read many articles about how testing consistently reveals anti-depressants to be only fractionally better than placebos, meaning odds are good that the placebo effect is what made me feel better, and not the drug. Which would be fine if the drug didn't actually do much of anything, but that isn't true: whether or not the drug actually cures the depression, it DOES change your brain chemistry, and I AM aware of those changes, some for good and some not. I have never effectively been able to remove myself from the medication: I NEED it now, and that bothers me a lot, and makes me extremely aware that we DO NOT really understand these medications yet. Which I can live with given that it is me, but I would be totally freaked out over if it was my child we were talking about.

It upsets me to think that I have allowed myself to become dependent on a class of drugs that study after study show do not do what they claim to do; the vast majority of support is anecdotal. It upsets me that no one ever told me about those studies. I cannot imagine, unless future studies show something different, allowing such an inadequately understood and extremely overused medication to get inside my children unless it was truly life or death. Not quality of life, but actual life or death.

We have a great anti-medication pediatrician. He has been such a perfect balance for me, advocating choices that would have been hard for me without his support, but that I really do believe in. My children never had a drop of cold or cough medicine until they were mid-way through elementary school, and even now they rarely take any sort of over the counter comfort medicine. And they are so happy with that choice. They LIKE letting nature take its course. Fits in perfectly with what they learn at school about healthy eating and staying (illegal) drug free. Fits in with what they've seen happen with the overuse of antibiotics. Fits in with the less is more values they seem to be finding, and with science they know and understand (and they both have amazing scientific minds).

My son is high functioning Aspergers, not diagnosed until he was 7. He is wonderfully free from mood issues like depression, and only has what would be considered a "normal" amount of anxiety: while he can have the occasional panic attack, there isn't much that scares him. Still, he used to have horrible meltdowns and he has always been like a destruction tornado. He also has the emotionally and physically challenging co-morbid of severe disgraphia/hypermobility/hypotonia, but that is a different thread and different protocol. I'll just note that the natural frustration from it did cause a lot of the meltdowns and mood issues, but how could it not?

I am one of those who found the comments from adult members on this forum and another that is similar, that I was active on before this, to be life changing for my son. That information led me to stop trying to squash my son's unintentional destruction and stimming, and just let him be. To also figure out and honor his sensory issues; turn off the TV if he asks, etc. To see what happened if I did that. And everything changed. He needs to MOVE, and to move constantly. Chew on his sleeves, walk up and over the couch; whatever. These movements CALM and CENTER him. Like many parents here, I gave up on my idea of a nice home in favor of a happier son more able to cope. He is, as he gets older, more mature, and able to cope with life, diverting all that more and more, so maybe someday we can return to a nice home (and its been years since he has chewed out a shirt). But be clear: this is one decision I have NEVER regretted, and I think it may be this simple attitude change, combined with all the other ways we decided to stop forcing him into a box and let him be who he really is, that is a very large reason why we have been so successful without any medications at all. I had to make a choice, and I made it. I will not give my son pills just so he can fit into a box that isn't his size. And, to be honest, I get concerned when the top reasons I hear for medicating include things like chewing, touching, stimming, etc; those behaviors usually exist for a reason and are not usually seriously harmful to the child, just harmful to our vision of how things are supposed to be, and I did feel strongly that it was my duty to go much deeper into understanding my child before I issued judgment on and tried to suppress those behaviors. And that process, of going deeper, was literally life changing for all of us. I can't stress how much that process accomplished, that I do not feel could ever have been accomplished with medication.

I just feel that our vision as parents shouldn't be that important, and my son is the proof that giving into his needs will not condemn a child to the sidelines of life, and I can't hide that I do want parents to understand that before making decisions.

I feel like medicating kids is different than medicating me. In the adult world there never seems to be TIME, but there IS time in a child's world - a good deal of it. Everything else is an illusion. They don't HAVE to A by X and B by Y; those are deadlines imposed by society. So I say forget about society: let my kids have the short time in their lives, childhood, where they don't have to be held hostage to all those expectations, and grow up in the way nature uniquely intended them to. If they were miserable or suffering it would be a different issue, but MINE are NOT.

I did have one deadline, however, with my son: I needed the meltdowns under control before puberty, before he was too large and strong for me to keep him safe. It took 4 years and some professional counseling but we did it. That whole process of identifying and mitigating triggers, then transferring responsibility to the child for managing his stress, is talked about in other threads.

My daughter, we're pretty sure, is ADD, but without the H. Classic can't walk to the bathroom 3 feet away without having her attention fall to something else. She also has undiagnosed mood disorders. But, again, we decided to see what happened if we played around with things, and sure enough after 3 years of effort she has devised strategies to keep herself focused, the biggest one being that she always multi-tasks. May seem counter-intuitive, and I didn't see that in another thread where someone talked about common strategies for ADD, but that is what she chose. She stays on task if she is splitting her attention.

The mood disorders are more problematic, but with my personal experience on anti-depressants, we are all (including her) loathe to go that route. What she experiences is still manageable, and she does have strategies that help. We do have some bad nights and bad days, but life doesn't have to be roses all the time, and she gets many more happy days than not.

Both kids are super smart and self-aware. As well as VERY opinionated about what they value and what they want for themselves. They meet enough of their (and our) goals to get over the set backs their issues present them. Which I point out for the simple reason that if it weren't the case, I can't say what changes to our protocol we might favor. I just want people to know that there ARE strategies that CAN work, and certainly are worth trying, but I also cannot say what is appropriate for any situation other than mine.

Last edited by DW_a_mom on 06 May 2012, 1:08 pm, edited 5 times in total.

Thank you for your perspective, DW. It is frustrating to me, too, how much is tossed around as "medical science" when in fact a lot of it is not tested the way it ought to be.

BTW, one resource I found important to me was the Frontline episode "the medicated child." Yes, even though it is a documentary, they pretty much came out with an anti-medication stance, but I did appreciate seeing what happened to some families who now wish they had not trusted their doctors as much as they did.
http://www.pbs.org/wgbh/pages/frontline/medicatedchild/

"And, to be honest, I get disappointed when the reasons I hear for medicating include things like chewing, touching, stimming, etc; those behaviors exist for a reason and are not seriously harmful to the child, just harmful to our vision of how things are supposed to be."

I thought this thread was supposed to be free of judgments of people's choices?

Nothing my son did in his manic phases calmed him down. The stims revved him up even more. And the behaviors *were* harmful to him -- they made it impossible for him to learn anything or to connect with anyone. Since he's always been big for his age, the potential for him to harm others was also very high.

P.S. I just found this quote from DW on another thread:

"Finding food issues will not cure a child of ASD, but it will allow them to be their best self, and when they are their best self, everything will get easier. "

That is *exactly* what medication did for my son. Allowed him to be his best self.

Making changes to a child's diet isn't free of risks either, physically or psychologically. I have a 48 year old friend who's still rebelling against healthy eating because her mother kept taking foods out of her diet in an effort to change her behavior.

OK, maybe I didn't say that right. I do get conflicted, but I also know I don't have the whole story. Long term posters here (like you) I KNOW those aren't ever the main reasons, just outward indications of something much more serious. I don't get that comfort with all new posters, and I long to hear more, to figure out how much about their child they have tried to understand.

I know your situation and if I made you feel bad, I didn't write it right. But that concept is a part of my decision for us, in our unique fact pattern.

I'll see how I can rewrite that.

Let me know how you think I've done and then maybe we can clean up the thread later (with approval from moderators I do still have removal tools).

Your comparison with the food, though, should stay. And I would like to see you fill out your story more with some of the things you've written in the last few posts. One reason I hesitated in posting my story is that I would have liked to see one pro, one con, one pro, one con, since each story is very emotional and of course we all have strong opinions. Hard to keep them from seeping in, and I apologize if I over did it.

My son was dx with ADHD when he was 2, doctor said he could prescribe meds but most likely they wouldn't work in a child that age.
My son was then redx as NOT having ADHD, but sensory integration dysfunction. We started treatement for this.
My son was then dx as having speech delay. We started treatment for this. He was then referred to special education services
Then my son was dx with PDD-NOS at age 5. We continued both OT and Speech.
When my son got to first grade, he started having daily meltdowns, became self injurious, refused to go to school, etc. After a year of this behavior, and the school district not wanting to follow his IEP, I removed him and homeshcooled him. It took about 6 months to get him to any school work at all, after a year he was on a roll and enjoyed learning.
Therapy, understanding and just hard work took him from daily meltdowns to meltdowns maybe 3 times a year.
During this time he participated in clubs, like Cub/Boy Scouts as well as local Book clubs. We did a lot of things in the community , as much as possible.
About 2 years ago, he suffered a seizure. Unknown cause. Then about a year later, he just simply passed out. Unknown case. Increase in headaches as well as tic behaviors. Neurologist found nothing abnormal in EEG or MRI. Did find low Vitamin B levels. Prescribed antiseizure medicaiton to treat headaches and tics, but did say it would also treat any seizures if present. Also suggested treatment of daily Vitamin B Complex. Declined antiseizure medication at time, sought to rule out things first. Headaches : Related to eyesight, needed reading glasses. Headaches disappeared. Tics: Actually increased without vitamin B treatment + Omega, also noticed they may not be tics but rather his way of dealing with allergies (dry itchy eyes, instead of using his hands to itch he would blink funny. Said it felt like his eye lids were getting stuck on his eyeballs. Scruntching would be related to his nose itching or dry contents). Stress induced the tic like behaviors too, so reduction methods for stress. Overall, he has very little problems now as long as he takes his medications. He is now able to verbalize when things are getting worse, and we have a plan in place to get the tics to a minimum if not reduced completely.
He is back into school now, small charter school and is doing well. He does get overwhelmed with the academic demands but says he just keeps it inside at school.
He finds if he can come home on a bad day and relax with his music, watch some youtube videos and go swing a the park behind us he feels better and doesn't get so angry.
He also sometimes has a I don't really care attitude about parts of his academic homework, partially normal but to him it has to serve a purpose or it isn't always worth doing (lol).
He struggles with writing (has alphasmart), but also struggles with the language part of writing. He also struggles with math, especially the language based math program at his school (doing much better, especially when he knows the homework is for completion rather than graded for correctness. He is much more willing to try and learn.). Educational adjustments and modifications have helped greatly, also finding the most appropriate teacher and teaching method.

So far he is ok, and although he is difficult (more like stubborn) at times, he is overall a pretty good kid. I am always amazed at his compassion and willingness to help others. His dedication to playing his guitar. He sees a therapist, and is listening to what he has to say about anger and interacting with other kids who bother him. Trying to implement the things this man talks about with him. Has friends at school, about 4 really good ones. Past close friends (same ages) he had from Cub/Boy scouts (they go to his school) have pretty much written him off because they are "popular" and he is not. On the flipside, the older boys from his Boy Scout troop that go to the same school are friendly and say hi to him regularly. He knows he has problems with learning, and accepts that at some point he may not pass (8th grade they do hold kids back if they are not academically prepared for the high school). I think he is more ok with this than I am (lol).

Throughout it all, I have not medicated him with anything but vitamin B + Omega and Claritin when needed. Other treatment has worked well, and I am quick with intervention/help for him. I can sense when he is getting agitated. I think having someone to talk to besides me (therapist) has been very helpful for him (and me!!). I am not anti medication, but feel like it should be used as a last line of treatment. I have friends who son is very severe, and it is obvious that he NEEDS his medications to function at even a VERY very basic level. He is non-verbal and very physically destructive to himself, his home and his family. If my son did not respond to therapy, educational intervention strategies, etc. I would absolutely consider medications.

Part of what scares me about medications, is that I have known families who use these as their main line of therapy (or assistance) for their children end up down the road with a nightmare. Almost all of them experience a point where the once wonder drug wears off and is no longer effective for their kids. Then they have to not only deal with the behaviors full force, but they also have to wait WEEKS if not months to find the next wonder drug. I knew a young man, whose parents just simply could not deal with his behaviors (dad was in denial, and mom was left with brunt of working and taking care of his needs). As a result of their disagreements he ended up on ONE medication to deal with his issues. This worked great, until it wore off. Then he had to be seen for more medication management. They ended up adding more and more medications, until this young man in his teens was on up to 5 psychiatric meds at one time. They didn't know what was working and what wasn't anymore. He had to be admitted to an inpatient program at the children's hospital to ween him off the meds. They then had to start all over again, and find the ONE medication that worked. They ended up on a combo of two medications.

I want my son to know how his body feels, and what works best for him WITHOUT medications. Medications can mask many of the things our kids are going to have to deal with for the rest of their lives. I am pretty sure I have Aspergers Syndrome. I always feared that once he was an adult without me present (i.e. moved away, not alive anymore, etc.) he may have issues trying to get his medications (costs) or he simply would not be able to remember to take them regularly. This fueled a passion in me to get him as much help when he was younger, and today as a teen while it is affordable for me to do so. With all this intervention, I think my son has grown into a nice young man. Sure, he still struggles with things but he is getting through it. I honestly never thought his first year back in public school would go so well. He has 12 more days to maintain all his passing grades. He is excited that he made it, proud of himself that he has passed the 7th grade!! !

It's been almost a month, but I finally have some free time to come back and finish our story.

The decision to medicate is a tough one, and once you've made it, finding the right medication or combination of medications is also tough. I was predisposed in favor of trying medication for his ADHD symptoms, but waited until we found the right doctor to do so (and until a crisis at school increased our sense of urgency). DS6 is seen by a developmental-behavioral pediatrician who is also a professor of pediatrics and the director of a clinic that trains future dev-bev peds.

Over the last 7 months, the doctor has taken a low and slow approach to medicating, increasing or changing only one thing at a time. We see her and her trainee once a month, and each appointment lasts an hour, discussing everything from our observations to school performance to side effects to future directions.

DS takes both an extended-release stimulant ("A") and a non-stimulant ("I"). "I" is a blood-pressure medication that is commonly used off-label to treat ADHD. Ironically, I actually feel more comfortable with "A" than with "I". The main side effect he's had from "A" is appetite suppression, which we work around with extra snacks and ice cream. "A" definitely increases his focus and reduces his impulsivity. "I" is also supposed to help with focus and impulsivity, but the main thing I notice is that it decreases his emotional reactivity. He's much more able to handle little upsets and disappointments -- the meltdowns and tantrums become less frequent and less severe. The problem with "I" is that at the dosage that is most effective for DS, the side effects are unacceptable. He walks slowly, has low energy, and has just generally lost his spark.

Here's what the progression of medication has been:

Oct -- before medication, DS is having 3-5 incidents per day, and major meltdowns involving hitting and kicking almost daily. Things come to a head when his teacher is out for restraint training and the resource teacher can't handle a hitting, kicking, throwing, screaming meltdown that lasts two hours, and calls me to come get DS from school. We request an evaluation for a 1:1 aid. They start the process but we are told the it takes 60 days. Homeschooling is not an option (tried it unsuccessfully last year, and I still have twin toddlers at home), getting into a non-public school would likely take the rest of the year and a due process hearing. The district has eliminated all special day classes, mainstreaming everyone. DS hates the resource teacher, so spending time in her room is not a good idea. We have reached the point where medication is the best option.

Nov -- Have the first appt and start on lowest does of "A". Teacher says she sees some incremental improvement, we see no difference at home. See an increase in blinking tics.

Dec -- add "I" over the month long break. Tics go away. Home is calmer and trips to the store are noticibly easier.

Jan -- stay the course to see how it looks at school. Teacher says incremental improvement, but she can almost set her clock by meltdowns at particular times of day, it's obvious when the parts of the extended release "A" is wearing off and kicking in. At the IEP meeting, the school says he does not need a 1:1 aid, the shared aid supporting 5 IEP students in the classroom is sufficient. Our advocate is useless.

Feb -- Increase "I". School improves a bit more, major meltdowns are now every 2-3 days instead of daily.

March -- Increase "A". It's like we've suddenly hit a magic dosage. Dramatic improvement at school. For the first time, DS is completing written work and able to join the reading group. Meltdowns are down to about 1/week. DS's very talented teacher is able to teach him to take himself to a break area when he gets upset, to apologize and make amends, and he begins playing with peers occassionally. After-school becomes a nightmare as DS experiences rebound, so mid-month we add an afternoon short-acting booster of "A". At the same time, I am increasingly dissatisfied with the side effects of "I" -- terrible constipation, DS doesn't want to ride bikes or play outside, he walks slowly. The kid who used to run a half mile without stopping now stops every 20 yards. He's lost his spark -- our Tigger has turned into Eyeore.

April -- School has a month-long spring break. We decrease "I", and our son is himself again. We see more bouts of hyperactivity and emotional reactivity. Late evenings (after the booster has worn off) become terrible. Mid-month, the doctor switches from the two doses of "A" to a single higher dose of "A" -- same total amount, but she says it will have a higher peak and a slower dropoff. As usual, she's right, and evenings are fine again. I hope that the higher "A" and lower "I" will be a good combination for school.

May -- School resumes. DS's teacher reports more meltdowns and that he's become unreachable during them again. The doctor decides to try increasing "A" one last time. DS's focus improves, but the emotional reactivity is still a problem. I email the doctor and she calls to give us time to consider the options of staying the course, returing to the higher dose of "I", or trying Risperidone ("R") at the next appointment in a week. She goes into depth about the benefits and side effects. We decide that "I" is so unacceptable that we need to at least try "R".
Before we have a chance to start "R", DS has 3 extreme meltdowns in two days, one requiring two-person restraint, one where he takes all his clothes off, and the third where he runs out of the school's front gate for the first time. The principal sees the hitting, kicking, screaming, biting, running meltdown and is so concerned that he calls me to come to school. By the time I get there, DS is in his break area and more or less calm. I am told the team will be meeting "soon".

As a tempory measure, we increase "I", until "R" can take effect (it takes a week, and we may need to slowly increase the dose to find the right level). Like magic, DS has a perfect week at school -- completing written work, attending reading group, working well at speech and OT, and actually having conversations and playing with peers. One tiny meltdown, but no hitting or kicking and he took himself to the break area and recovered in half an hour. With such a dramatic difference, how can I not consider medication a tool to use?

Perhaps we could get by without "I", or with the lower dose of "I" if the school were more skilled at identifying and eliminating triggers. At the higher dose DS is able to communicate what is bothering him, and the teacher has been responsive about making changes for him. The next step is to reduce and then hopefully eliminate "I", if "R" turns out to work better for him. After a week taking both we see less perseveration and getting mentally stuck. We're going to let him have two more weeks on both meds, then try lowering "I".

There is still some question as to whether DS will now get an aide, or get placed in a non-public school. In that case I think we would definitely try lowering "I" and keep "A". Homeschooling becomes more of an option as the twins get old enough for preschool. (Although it might be better for our family for me to return to work and pay the tuition for the right non-public school.) We also plan to move to a different school district within a year.

It's a long story that I can't seem to tell in a shorter fashion, but the experience of such an instant, dramatic change when we hit the right dose is why we continue to choose to medicate.

Last edited by zette on 03 Jun 2012, 3:08 pm, edited 1 time in total.

I tried medicine; it did help for a while, but then it stopped helping, and it became a chore to take.

On the flip side, I've had people tell me that medicine changed their lives.

If it can offer a better quality of life, why not try it? It's not like you have can't say "it doesn't work."