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This is Day 23 in the series: 31 days on Living with ADHD, Autism and Sensory Processing Disorder: What We Have Tried, What Has Worked, What Hasn’t Worked, and Never Giving Up. Click here to see all the posts in this series.
I am not one of those parents begging for medication for their child. For the longest time I thought I would do just about anything and put up with just about anything to avoid medicating my child. In a lot of ways I still feel the same….but at some point it became apparent Mr Rockstar struggles so much at times that it stifles his ability to learn.
Fight or Flight
What do I mean when I say it stifles his ability to learn? The therapists tell us many of Mr Rockstar’s major meltdowns trigger flight or fight responses. Here is an explanation from cmhc.utexas.edu of fight or flight:
“How does it work?
- A threat is perceived
- The autonomic nervous system automatically puts body on alert.
- The adrenal cortex automatically releases stress hormones.
- The heart automatically beats harder and more rapidly.
- Breathing automatically becomes more rapid.
- Thyroid gland automatically stimulates the metabolism.
- Larger muscles automatically receive more oxygenated blood.
The important thing to take away is that the fight or flight response is an automatic response.
Even though the fight or flight response is automatic, it isn’t always accurate. In fact most of the time when the fight or flight response is triggered it is a false alarm – there is no threat to survival. The part of the brain the initiates the automatic part of the fight or flight response, the amygdala, can’t distinguish between a real threat and a perceived threat.“
So a flight or fight response is automatic and can be triggered by a false alarm. Once it is triggered it can take up to 20-60 minutes for the body to return to its pre-arousal state (psychology.about.com). During a “flight or flight” episode the prehistoric part of the brain takes over and all ability to rationalize is lost until the body calms down.
What Does this all Mean?
The therapists and doctors we have been working with for over a year concluded that Mr Rockstar is already so overwhelmed that a fight or flight response is easily triggered. This response is triggered so quickly that Mr Rockstar doesn’t have a chance to implement or practice the things being taught to him by his therapists on how to calm down and work through the situation. The idea behind using medication is that it slows down the triggering of a “fight or flight” response enough that he could practice what he is being taught. After a year or two of learning how to appropriately deal with situations we would be able to wean him off the medications and handling difficult situations appropriately would have become a matter of habit….at least that is our hope.
A friend asked me about their pediatrician diagnosing sensory processing disorder (SPD) in their son and it made me realize NONE of our regular pediatricians have made diagnoses of autism, ADHD, or SPD. Most of them, while great for general health, have seemed pretty clueless about SPD, high functioning autism, and ADHD. Unless your child has a severe delay or issue many pediatricians will miss it. Our first pediatrician did notice Mr Rockstar’s speech delay but he had no clue about the early intervention program with the state (being a new mother I didn’t either) and since our insurance didn’t pay for speech therapy, and it is crazy expensive, we just waited and waited to start speech. Thankfully some other mom friends directed me to the right resources so by age 2 Mr Rockstar started speech therapy. This just goes to show you the limitations of pediatricians. If you feel like something is going on (and especially if you are considering medication) you need to find a pediatrician who specializes in these disorders or a good developmental pediatrician. Our best resources have always been the therapists (speech, occupational, and behavioral). They see loads and loads of these kids so they are much more in tune with the finer nuances than most pediatricians. Our therapists have been the ones that have educated us along the way on what the next step to take is.
With that in mind we went and saw a pediatrician who specialized in behavioral issues. The first medication we ever gave Mr Rockstar for Autism/ADHD/SPD was Tenex in April of 2014. He was five and a half years old at the time. The generic name for Tenex is Guanfacine and the long acting form is Intuniv. It is an old school high blood pressure medication that has been shown to be effective with ADHD kids with aggression. When we first gave it to him it was AMAZING. He could sit still, look me in the eye, and carry on a conversation for minutes on end. He seemed at peace vs always being agitated (like his skin was crawling with ants). I felt like I got my sweet boy back.
When we first started the medication he was really tired. This is one reason the medication dosage is built up slowly over the course of a few weeks. We would up his dosage on Friday and he would sleep all weekend. Then he would have a great few days at school and by the end of the week his body was used to the dosage and he might start having some behavioral issues albeit much less than before starting the medication. After his medication dosage leveled out he continued to be really drowsy in the afternoons. He started taking a daily afternoon nap again. For the majority of the day he had a high activity level and his personality didn’t appear “drugged”, just calmer than usual. He wasn’t flat. His personality still had distinct highs and lows and he still showed a lot of passion for things he cared about. By about noon his energy level would plummet and he would take a nap from 1-3ish every day. Mr Rockstar kept his afternoon nap until he was almost 5 so he had actually only been nap free for about 6 months when we started this medication. It was easy enough to go back on his old sleep schedule by moving his bedtime from 7:30pm to 9pm to accommodate the nap.
For quiet a few months the Tenex seemed to help a ton. Mr Rockstar went from being almost kicked out of preschool to being pretty happy at school. He was able to finish out the school year without any more major incidences. I could even sometimes take a shower while the kids played together unsupervised without fear of bodily harm to one of the twins.
Even before starting the Tenex Mr Rockstar’s wake-up time was slowly creeping earlier and earlier. This is a seasonal pattern with him that coincides with the shift in morning sunlight. Often by early summer (probably in part because of the earlier wake-up time) Mr Rockstar has a major insomnia episode. This year was no different. He went from everything being pretty good except for the 5AM wakeup time to a full blown insomnia episode in late June. It was a huge problem. At this point we started Mr Rockstar on melatonin. This at least helped him get to sleep in the evenings but he was still waking up anywhere from 11:30pm to 2:00 am and would stay up until 6am or later. When he would finally crash he might take a 3 hour nap but it was nowhere near what he needed to meet his daily sleep requirement.
After consulting with his doctor we started giving him some Tenex in the evenings too. This did reduce the frequency and length of the night wakings but they continued to be regular and pretty severe until the end of the summer. This is when we were referred to a child psychiatrist. The psychiatrist had us switch to Intuniv, the long acting for of Tenex, hoping this might reduce the daytime sleepiness and reduce night wakings. Unfortunately it only moderately helped and its effectiveness at helping Mr Rockstar control himself during the day seemed to be less than the Tenex. Because it is a blood pressure medication, and Mr Rockstar’s BP was getting on the low side, we couldn’t raise the dosage any more. Since we had never tried a traditional stimulant medication the psychiatrist suggested we wean Mr Rockstar off the Intuniv and try Ritalin. The week of weaning him off was AWFUL. He was extremely aggressive and destructive. This was also about the time our first elimination diet came to an end partly because Mr Rockstar was so unstable I couldn’t handle it any longer.
Ritalin + Clonidine
Mr Rockstar first started on short acting Ritalin a little over a month ago. He would take one in the morning and half of one in the afternoon. It did help calm him down. I didn’t feel like his personality was flat and it didn’t make him drowsy so the afternoon nap once again disappeared. However, our days felt like a roller coaster. He would be hyper and aggressive in the morning until the Ritalin kicked in. Then we would have a great morning. About noon he would start getting hyper again. I would give him some more Ritalin at 1PM. If I forgot it was painfully obvious by 2pm. By 5pm the afternoon dose would have worn off. Then the psychiatrist switched Mr Rockstar to the long acting version of Ritalin. This has been much better. At least for now we have had the best couple weeks in months. Who knows how long this will last?
On the Ritalin sometimes Mr Rockstar reacts unreasonably to a life circumstance (for example gets angry at me that I can’t make Hubby’s plane land while we were waiting to pick him up from the airport) but instead of hitting or throwing things he is just verbalizing his frustration. Sometimes what he says can be pretty bad using words like “kill”, “break with a hammer”, “hate” but considering he has gone from crazy actions to just crazy talk I’ll take it as an improvement! His therapists agree that this is a step in the right direction. He is verbalizing his feelings so at least he is recognizing them vs impulsively acting on them. This is the first step to learning to process them and make appropriate decisions for the given situation.
The psychiatrist said Mr Rockstar might need a prescription to help with sleep once he started the Ritalin….and boy did he. It would take hours of soothing and mindfulness exercises before Mr Rockstar would eventually fall asleep about 1AM. I called in an SOS to his psychiatrist and he got us a prescription for Clonidine. Ritalin is a stimulant and many kids have trouble falling asleep while on Ritalin. The Clonidine takes about an hour to kick in but then Mr Rockstar just passes out. He typically sleeps through the night for the 10-11 hours recommended for an average 6 year old. He has 1-2 night wakings a week but he is only up for 10-20 minutes which I think is pretty average for most kids his age. It makes me feel better that the Clonidine isn’t knocking him out so much that he doesn’t still occasionally want to come check in with us at night for security.
If your team of therapists, teachers, and doctors all agree medication would help your child try not to feel guilty trying it. I felt like a failure when they first were suggesting it but at the same time so overwhelmed I knew it was what we needed to do. It does seem to slow down Mr Rockstar’s fight or flight response enough that he has a chance to use the skills everybody is trying to teach him about calming down and using his words rather than his fists to solve a problem.
Besides the stigma you get from society for medicating your child it is not a quick or easy solution. With the child growing and developing there is no one drug and one dosage that is going to work forever. Not only will it take trying a few for you to find one that works but that drug and dosage will probably only work for 6 months before the child’s body is used to it or they have changed enough that it is no longer effective. I can already see we might need to increase the Ritalin dose in the next month or two. Medication is just a small piece of the puzzle to help your child gain greater self control. Exercise and therapy are more important than medication in the improvement of your child’s behavior.