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Tuesday, July 8, 2014

Down Two Meds

After school ended, Alex and I decided it was the right time to take Ben, Jonah, and Aidan off some of their meds. We want to test and see if the boys really need the meds, or if we can do without them. I discussed this decision with all of the boys' therapists and our psychiatrist before we changed anything. We've put a lot of other kinds of supports in place that will help the boys as they get off some of their medications, so we felt like it was time to give some changes a try.
 The first med we got rid of was a medication that helps the boys sleep. When Ella went through her whole sleep study period, I learned more about sleep, and realized that all our kids may be "short sleepers" like Ella is. She is one standard deviation away from the norm of how much sleep most kids her age need. She just needs less sleep than other kids. (Mama wasn't too happy about this, for selfish reasons.) So maybe the boys are short sleepers too, and have anxiety about sleep because of a lifetime of being forced to try and sleep when they just can't. We decided to test life out without the medication.

To ease the boys into life without sleepy drugs, we have been using Melatonin to help them feel sleepy at night. Otherwise we learned the hard way that they don't feel tired, which leads to them getting anxious about not feeling tired, which leads to them totally freaking out about not feeling tired, which makes their adrenaline go nuts, which REALLY makes them not tired. So Melatonin it is, at least for a little while. I feel like Melatonin is a lot different than the drug we were using before for sleep, so I feel like it's ok to use this to help the boys during this transition period.

So far, the boys stay up later than they used to. They don't feel the exhaustion that the drug used to induce every night. Because they don't "feel tired," they thought they shouldn't go to their beds and start getting ready for sleep. We've had to start training the boys to know that at a certain time, it is time to lay down in your own bed, turn off electronics, and just relax. Maybe read, or listen to calm music. Just because they don't feel completely drained and exhausted does not mean their bodies are not ready for sleep. I hadn't realized we would have to do some teaching about this. It still doesn't come naturally, especially to Ben and Aidan, the whole bedtime "feeling." Jonah is getting it- he can tell when he is feeling tired and ready for sleep. The other boys will get it I'm sure, it just takes some time to relearn these things.

Not having the boys crash every night has enabled us to have more relaxed evenings as a family. We can take evening walks with Ollie, we can go for a bike ride, Mama can go grocery shopping while Daddy stays home to play, it's just a lot less rushed. So that's the benefit of no sleepy meds. The downside is that Alex and my evening routine together has had to change. It has now been infiltrated by children. The other night the boys were all in bed, but Miss Ella I Never Need Sleep was still up. Alex and I had ordered pizza as a special treat. Ella was very indignant that I always say we can order pizza for the kids sometime and we never do because I forget. She had a stinky little meltdown over it. Because it was late and I was tired, I picked off all the mushrooms and olives from a piece of pizza and let Ella eat it with us while the three of us watched "White Collar." Which is a grown up show and I'm sure she didn't follow any of it, but there was nothing inappropriate so it was fine. At one point, Ella leaned over to me on the couch and said "I like this show." Yeah, I'm sure. 

SIX pieces of picked-off cheese pizza later, my sweet daughter was feeling sleepy and ready to snuggle. "With Dada, because he rubs backs better." 
The other medication we took the boys off of is their med for ADHD. For a long time I've been wondering if the boys have true, classic ADHD, or just symptoms of ADHD because of their Tourette's Syndrome. Executive functioning can suffer when you have TS, sometimes you can't focus, organize, or plan. Maybe the boys don't have actual Attention Deficit Disorder. The psychiatrist has voiced this thought. The boys' counselors have expressed this concern to me. I've researched about TS and seen that this could be the case for our boys. Teachers do not report that the boys' focus and attention are much improved with the increase of ADHD meds. I don't see much improvement at home with behaviors like impulsivity when the boys are on the medications. So we just decided enough is enough. Let's take the boys off the medications and just see how it goes. 

The psychiatrist talked about how there would be some withdrawal. There could be some more behavior issues than before. There could be some emotional backlash for the boys with our decision to take away meds. He wanted to make sure I was up for the challenge and knew what I was getting in to. And he was, surprisingly, very supportive of my decision. Before I talked with the psychiatrist, everyone kept saying with horror "Oh, you're going to have to talk about it with…the psychiatrist." Psychiatrists have a reputation of pushing meds, regardless of whether the need for them is real or not. Thankfully, we have had two pediatric psychiatrists during this journey who have both been willing to listen to me and take my voice and opinion into consideration, then give me advice about what to do, and let me make the final call. Frankly, if the psychiatrists were not like that, I would not work with them. I know my boys the best, I should get to make decisions about their mental, physical, and emotional health. With the guidance of a well-informed doctor. So luckily we have been blessed with doctors who work with me, regardless of whether they think I'm a bit loony. I went into our appointment with confidence that I was making the right decision. (I'm sure after our appointment when I announced I was taking my three boys off their meds that help them sleep and keep them focused, that psychiatrist had a very good laugh at my expense. Three boys. No sleep. Kooky ADHD behavior all summer. Like that'll last.) So I appreciated our psychiatrist's reaction. And he said I was very brave. (I'm sure he meant 'crazy'.) 

So we've been handling several weeks of fewer meds. There have been bumps along the way, of course. Sometimes that ADHD behavior really gets ramped up and it's hard to calm kiddos down. Sometimes we haven't done the Melatonin at the right time and kids are up until ungodly hours. Sometimes impulsivity has been more intense than before and I really have to keep a closer eye on all the kids, from old to young, than I had to before. Sometimes tantrums and meltdowns and rages are intense. Short-lived, usually, but intense. Sometimes I want to pull my hair out because AS I'm answering one question, the child is asking me four more. So yes, things are a little more intense. A little more challenging. But I'm up for it.

These things have surprised me, but also sort of delighted me. My kids are hanging in there without two of their meds. Our life isn't turning upside down. It's challenging, but we're doing ok. Now I have to make changes and plans that I didn't have to before in order to help the boys with the "extra" things they are thinking, feeling, and doing. I have to be more watchful and prepared. I have to think outside the box for ways to help the boys calm down, stay healthy, be active, stay happy. But I knew it would take some creative work on my part in order to successfully get the boys off some meds. So I'm ok with all this. 

We have tried some "alternative" ways of supporting the boys since taking them off some of their meds. Some holistic, safe, beautiful ways of supporting them. We've been doing a LOT of energy work. Some of the kids get Zero Balancing, which is a form of energy work. We've been supporting their immune systems through supplements, helping them maintain their calm brain and moods through fish oil, vitamins and herbs. The kids see the chiropractor to help with bed-wetting and to keep all their bones where they should be. When someone is all worked up in the evening, they take epsom salt baths with lavender essential oil. We have essential oils that have a calming or grounding effect diffusing in the kitchen almost all the times. There are essential oil blends in my cabinet to help with symptoms of ADHD. We try to eat a gluten-free diet. We don't do soda or lots of sugar. We try to eat organic when we can. We have different kinds of milk in our fridge than we used to- milk made from almonds and rice. We stay active. We try to reduce the kids' screen time. We try to stay positive, patient, loving. (Do we lose our cool sometimes? Of course. But we still keep trying.) We try to meet each child's needs as best we can. We have a bunch of kiddos, so this isn't always perfect. But we do the best we can.
I know there are a lot of people who may think these alternative methods of helping our kids won't work. But a lot of people think meds also don't work, or that you shouldn't put your kiddos on medications. I understand skepticism. But I also believe that you have to do what is right for your family. And I believe in all the things we do with the kids, and I can see the difference with the alternative things we've chosen. The bottom line is that none of these things we're doing have any side effects or negative consequences, unlike medications and drugs (which the boys still do take for anxiety and mood stabilization). Essential oils and energy work, among all the other things we're doing, can't hurt the kids in any way. So why not try? I'm willing to be considered a bit loony and quacky. Who cares. You never know what thing you might stumble across that might help your child in some way, and that is all I'm looking for. My goal is just to help the kids have the best, happiest, healthiest life possible. 

The adventure continues. My goal has always been to have the kids get off medications, any or all, at some point in their lives. I want them to heal whatever is happening in their little bodies, not just mask the symptoms with drugs. So even though in some ways this summer is quite difficult, I'm feeling happy and content knowing that the boys now take way more vitamins and supplements than they do medications and drugs. We're doing the best we can. That's all you can do.


Full Spectrum Mama said...

WOW. THere is so much in here I don't even know where to start, maybe with my biggest reaction which was - wait, i have to ACCEPT my short sleeper???? Noooooo.
BUt I can see you are, as am I, all about meeting kids where they are while nurturing them to their best selves...sigh.
Also, YES on the TS and Executive Function: any of these neurological differences can directly OR indirectly (!) cause Executive Functioning to decline (or, um, barely exist).
Thanks and love,
Really great post,

Carrie said...

Thanks for your thoughts! I think we're on the same page as far as kiddos are concerned! Trust me, I am not happy that I have FOUR SHORT SLEEPERS!!! Not fun when you're a long sleeper yourself. I appreciate your comments! Take care!