What Do You Get When You Cross An Elephant With a Skeleton?

So the 'elephant in the room' metaphor is used when there is a big issue or problem that no one wants to talk about. And when someone has a skeleton in their closet, the reference is made regarding an undisclosed fact about that person that they would not like others to know about. When thinking about this particular topic, I wrestled with which one of these idioms was the correct description. I settled on both.

Kids (maybe even all people?) with Down syndrome often display signs of ADHD. My uneducated observation is that some of that is due to delayed development. Any parent of a toddler knows not to really expect their kids to stay 'on task' or not act on every impulse or sit still. At some point, kids grow out of certain behaviors, but those in the T21 community take longer to do so, meaning these early childhood 'symptoms' are still present years after their peers have moved on.

ADHD is not a new diagnosis; pretty much every one, especially those with kids, has heard about it or knows someone dealing with it. But (in my limited experience) the actual diagnosis of it is not an exact science. Many kids exhibit some of the signs, but figuring out if they are showing 'enough' of them gets tricky. When it comes to the big three of ADHD (inattentiveness, hyperactivity, and impulsivity), how do you determine if your child's inability to sit still is ADHD or him just being a kid? Or what about impulsivity? As a parent of two teens that often remind me that the undeveloped prefrontal cortex extends much beyond elementary years, I can assure you impulsivity is something that is present in a wide variety of kids NOT diagnosed with ADHD.

So here is the elephant in the room. Our kids with Down syndrome are more likely to display these signs at a time in their lives when typical kids are not expected to anymore. So many of us start to worry when our kids enter school and these symptoms start to stand out. (Well, let's be honest...we started worrying a long time ago. This is just us adding to the other worries.) We ask our friends, we ask our doctors, we go online... And most of us find out that plenty of our child's T21 peers struggle with the same thing. There is some comfort in that, of course, but unfortunately, most of us are in educational settings where we are the only one in the grade, maybe even the school. So knowing that it is common and 'normal' for our kids to struggle this way doesn't help when it comes to our kid operating in a school where no other kids are struggling that way. So we are back at worrying about what to do.

Enter the skeleton.

If we ask around enough, and do enough deep dives online, we likely come across someone who brings up ADHD. Eventually that leads to medication. ADHD medication, while absolutely vital for many people, often evokes less-than-good feelings. Whether it's because of the experience of negative side effects or the shame of needing medication or the frustration with over-prescribing, it's not an admission I've found people to offer up freely. It's that thing that never came up in the baby books, in the conversations with other moms about what therapies are best or necessary, in the online research about developmental toys or games, or even in the endless doctor appointments. But once I asked the question, I found that we were far from alone in dipping our toes into the world of ADHD and the treatment that comes with it.

That was a loooong intro to get to how this works into our lives. When Ruby started Kindergarten, the impulsivity and inability to focus was brought to our attention daily. It was something we'd seen at home, but either because I work with her one-on-one so much or because I'd gotten used to it, it didn't seem like a problem. So we tried some non-medical options: different fish oil supplements that had great success with focusing. We never noticed any change. So we did research on CBD oil and talked to other parents just ahead of us that described their child 'before' with great similarity to Ruby. We gave it a shot with no improvements. Finally we tried one more 'new and improved' fish oil supplement. Nada.

At this point, I was ready to keep pressing forward. Of course I want Ruby to succeed in school, but I was starting to see how her behaviors were affecting her socially. I didn't want her to miss out on friendships and experiences because she couldn't stop petting someone's hair or writing on their paper or hugging them too hard.

Just before Thanksgiving I met with Ruby's doctor to talk about what we do from here. She had never pushed us to the diagnosis, and certainly not medication, but she saw what we saw and was wonderful in answering all of my questions regarding this next step. (And I had a LOT of questions: I scheduled an appointment for just me to meet with her, without Ruby, so that I would not miss anything.) We agreed on a stimulant, very low dosage to start. We talked through the side affects and what I should see when and how we could stop if we needed to.

With hope and trepidation I gave her the first pill the Monday we returned to school. Her teacher texted me a few hours later with rave reviews. Ruby was talking with such precision and order of speech (oftentimes her longer sentences are out of order), and she was more focused than they usually see her. I was over the moon! However, when I picked her up, she was tired and a bit withdrawn. I knew this was due to the meds, but I still didn't love it. I treaded lightly and just loved on her all afternoon. The next day was the same: great at school, not happy or upbeat at all at home.

The week continued on that way, so I gave the doctor a call before the weekend. As much as we were loving the positives (the teacher was getting so much great work out of her, and her interactions with peers was wonderful), I was not ok with how sullen and almost sad Ruby was in the afternoons. We discussed a few strategies to try for the next week, and if nothing changed, we would discontinue.

By the time the week started again, everything evened out, on both side. Ruby was fine in the afternoons, and she was still having good days at school, though not quite as impressive as the week before.

So here we are, about 7 weeks in. (We did try to increase at one point, but we noticed no gains and Ruby's internal clock woke her up well before 6AM.) Is this medication the silver bullet? Definitely not. Ruby is still impulsive, easily distracted and fidgety, but it doesn't get in the way as much as it did before. And she doesn't appear to experience any of the negative side affects (except for that first week), so we are sticking with it for now.

so much llama drama

this girl. she can go from being 100% to less than 10% in the drop of a hat. she can spike a 102 fever, and then (after you've hemmed and hawed about it forever), she'll start to drop on her own before you've even poured the tylenol. she will be so puny she can't even stand on her own two feet, then rise to run and jump and dance with no apparent reason for the rally.

this makes it hard - so hard - to know what to brush off and what to bring to a doctor's attention. with eli and maddux, i was less than alarmed when they had the occasional fever or cough...almost every illness before ruby came along was treated with some extra steam in the shower and a nap. but ruby has had more medical challenges than we've known what to do with. the biggest (leukemia, of course) is the one that has made me run to the doctor way more often than i would like. mainly because i just don't know from one illness to the next which ones are 'real'. sometimes she seems so sick and we go in only to be told it's just a virus that needs rest and hydration. then she'll be seemingly fine and spike a random fever at school only for us to find out that she's got strep or bronchitis.

the last few weeks have found ruby a little congested, but all of us have been feeling the effects of allergies and/or poor air quality. so no reason for alarm. until this morning when she wouldn't rouse from her bed. she was awake, but lethargic at best. but even after a breathing treatment and a popsicle (tried to get her to eat ANYthing), she hadn't improved.

so ruby and i were off to the pediatrician when they opened. we were there for four hours. they didn't like her oxygen levels, so gave her another breathing treatment, which actually tanked her oxygen levels, so they wheeled the big O2 tank in. she had another treatment (or maybe saline and a treatment?) with the O2 - she slept through that because her pulse-ox was so low. then some prednisone and more saline (all the while with O2 on her because as soon as they took it off her levels tanked again).

finally, they resigned to sending us to the ER because ruby's levels could not stabilize without being hooked up to oxygen. so much so that they called for medical transport because they didn't even want her off of O2 for the 30 minute drive it would take for me to get her there myself. (all during this four hours, ruby saw every nurse and tech in the pediatrician's office, because they have all seen her so much in the last six years, and they all wanted to check on her. love them.) sidenote: ruby will tell you she rode in the ambulance 'by self'. they gave me the choice of following in my car or riding with them, but if i rode with them i'd have to be up front (not with ruby). so i opted to drive my car because i wasn't sure how we would get home from the hospital at the end without it anyway!

once at Children's, they hooked her up to oxygen and another breathing treatment and ordered a chest x-ray. the doctor was cautiously optimistic that we'd not have to stay the night, but it all hinged on those films. we stayed on breathing treatments and oxygen for what felt like forever and tried to pass the time with tv and books. once they took us for the x-ray, they decided to test ruby's oxygen levels without being hooked up. she said as long as we could keep it above 94, she'd be happy. so they left and ruby and i played the game that if she could cough for me or do deep breaths, i would give her a few goldfish. it was amazing how well she would do with that, and she kept her numbers closer to 98 the whole time. this went on for another long time, ending with the doctor returning to inform us we could go home with another (new) inhaler and some antibiotics to help clear up whatever was trying to brew in her lungs.

back to the whole 'i just can't tell' storyline. after dinner, ruby was dancing with her sister, packing a bag for a sleepover (she does this every day) and acting every bit her regular self. all less than 8 hours after she was hooked up to oxygen and sent off in an ambulance.

she keeps me on my toes, this one!

Oh What a Night

Deuteronomy 31:6   Be strong and courageous. Do not be afraid or terrified, for the Lord your God goes with you; he will never leave you nor forsake you.

Ruby had another low fever around dinner time last night, which the nurse was pretty confident would prove to be 'the one', but then it started to drop before bed. (*'The one' fever we are looking for is one that almost always occurs when Ruby's post-chemo levels are at their lowest - right now - because it is the proverbial 'hump' we have to get over before recovering and being released.) Ruby went to bed around 8:30, but was very restless in her sleep, moving around a bunch in her crib.

Around 10PM, the nurse came in to hook Ruby up to her fluids. We usually do that at bedtime, but they opted to wait last night (maybe waiting for the fever?). So that took some help from me; usually Ruby would sleep right through that, but the restlessness made her easily roused. I had to hold her to get her back to sleep, and then her IV alarm kept going off (I never really figured out why...the nurse fixed it each time).

At the midnight rounds, when I was just settling into bed, Ruby's fever was up high enough that they drew cultures and ordered antibiotics. This woke Ruby again because we also had to give her oral Tylenol. (Just what Ruby loves, especially in the middle of a night with no sleep.) I just held her through all of that until we got the first type of antibiotic in her (Zosyn).

Towards the end of that dose through her IV, I put her back in her bed and went to bed myself. A few minutes later the nurse came in because Ruby's IV alarm was going off signaling the Zosyn was finished. That meant it was time to start the next antibiotic (Vancomycin). I heard the nurse in here for quite a while getting it hooked up, but I eventually dozed off. Then I heard Ruby stand up in her crib and rattle around. I turned to her and told her it was ok and to go back to sleep. She got up and down a few more times and then whimpered. When I got up to hold her, I could smell that she needed a diaper change. I got the supplies and turned the light on just a little so I could see what I was doing. As I was changing her, Ruby was rubbing her face a bunch, as she typically would when woken up from sleep. But her face was all puffed up. As soon as I got the clean diaper on her I paged the nurse and the fun began.

Ruby's nurse called a few other nurses as soon as she saw Ruby. The Vancomycin was stopped immediately and Benadryl was started. Nurses were in and out as they checked the computer and made a call and checked Ruby again and again. They took her blood pressure, pulse ox, and listened to her chest about 100 times. Finally satisfied after her breathing sounded better, only our nurse remained. She had called the doctor and was going to hold off on the antibiotics until further notice. Ruby and I finally got some sleep around 4:30AM. 7AM brought more Tylenol for the fever that had gone back up, and 8:30AM was officially morning.

Ruby didn't want to eat or drink much of anything this morning, but by lunch she ate and drank a little. She was very moody this morning, but that could be the lack of sleep as much as it could be the fever or the reaction. During rounds we discussed where we go from here. The Vancomycin is preferred as it takes care of a large variety of infections. However, Ruby's reaction was severe and not typical. So, for now, she will receive antibiotics every 8 hours (until the fever goes away), and it will only be the Zosyn (doesn't cover as broad of a spectrum). I asked what our plan of attack was for the next round of chemo, as she will need to be protected from that large variety of infection as the chemo progresses. The doc on call assured me there were other options, but Zosyn is our plan for now.

Scary to think how labored Ruby's breathing was, scary to think that I would have slept through it had she not filled her diaper at that moment, scary to think a medicine that should show a side affect that severe quickly would wait until after the nurse watched and waited (20 minutes) to react. But it was not scary in that moment...God kept Mama Bear calm and awake enough to help, and He kept Ruby strong and healthy enough to withstand the craziness of the night.