Almost two weeks ago now, our Baby Guy, E, was playing all morning as he usually does. He was his usual self, a nonstop ball of energy who finally slowed down to snuggle in his crib for a hard-earned afternoon nap.
And all of a sudden, he looked grey.
I asked him if he felt okay, and he said he did. So I said, “are you just tired?’ and he admitted that he was, which is quite strange. But I pushed my concerned aside because I figured a nap would do him good, no matter what the issue was, and I kissed him and headed to Baby A’s room to feed him and try to get a two-kid nap time going so I could accomplish some housework.
It didn’t take long until E was yelling for me to take him potty, and I told him he had to wait until I could lay Baby A down, which just made him angry. If you have ever borne the wrath of a tired toddler, you know that asking one of them to wait for anything is pretty much equivalent to poking out their eyeballs. He was not happy. So finally, fearing for his clean, dry sheets, I laid A in his crib (now also screaming at me) and went to take the toddler to the potty before disaster struck.
In the five seconds it took me to get into his room, he’d stopped yelling and was looking up at me with his big blue eyes in his too grey face–his pillow, blankets, and clothes covered in vomit and saying, “Mommy, I’m sorry I spit up.”
I took him out and tried to get his clothes off before we went to the bathroom, but the hysterics started as soon as I touched him, and he refused to stand (or even sit) when I set him down to undress him. He was screaming that he needed to go potty, and he wouldn’t even hold his head up as I tried (and failed) to get his shirt off without making a huge mess all over the floor. I held his chin in my hand and looked right into his eyes, telling him to hold his head still so I could take his shirt off, and as soon as I let go, his head rolled right back.
I was starting to feel freaked out by this rag doll behavior, but I really thought I was just dealing with a sick/stubborn/tired toddler tantrum. I finally got him undressed as he lay limp in a little heap on the floor, screaming at me.
By the time I carried him into the bathroom and set him on the toilet, he’d stopped screaming and was quiet and calm. I sat him on his little seat and put my hands on his shoulders because he was leaning so far forward. Instantly his head rolled all the way back and smacked the toilet tank. After it hit, he really didn’t react, but his head seemed to bounce off and come all the way forward until he lay flat on his own legs. At that point, I was feeling much more fearful that his behavior wasn’t a tantrum, but that he was really, really sick. He threw up again while we were still in the bathroom, and then I carried him back to his room and laid him on the floor to change the sheets in his crib.
He didn’t move a muscle except to close his eyes. He fell asleep in the awkward position that I’d set him down in, and didn’t even stir when I took his temperature 3 times with two different thermometers because I couldn’t believe that the 95.4 degree reading was accurate. I covered him with a blanket and sent a text to my husband asking him to come home as soon as he could, called the pediatrician’s office to ask for their advice, and then I just waited. I left E’s door open and ventured to the next room, but checked on him every 3-5 minutes until my husband got home.
E kept throwing up, about once per hour, until around 2 am. We offered him Pedialyte and he’d take little sips, totally unable to sit up without us propping him, and still seemingly unable to support his own head. My husband spent the night on the floor with E, and I lost track of how many times he came into our room that night to change into a clean t-shirt.
In the morning, E felt a little bit better, but he was exhausted and weak. He ate a bit of applesauce and drank more Pedialyte, but it was clear that he still couldn’t sit up for long. He lay on the couch all day, never asking to get down and play, and for the most part, not even wanting me to read to him. He slept a lot, and finally in the evening wanted to walk to the bathroom. I held his hand, but even in doing that I had a hard time keeping him upright. He kept veering off to the side and stumbling in strange ways. My husband and I talked about it and figured he must just have been weak from lack of food and all the vomiting.
The next day E wanted to eat and play. He had better meals, drank some water, and got off the couch late in the morning. But when he walked it reminded me of when he was 12 months old and just learning to walk. He was walking with his legs spread farther apart than normal, and had to hold on to furniture every few steps to stay upright. I emailed his doctor about it through our patient portal and took a few videos of his strange walking with my phone, just in case. When my husband came home from work, E wanted to go to him to greet him, and started out crawling, instead of walking. He did stand up after crawling a bit, and held on to chairs to make his way to his daddy. My husband immediately confirmed my feelings that things were just not right, and I immediately called the doctor’s office to leave a message for our pediatrician.
We got a call back later, and E’s doctor took time to talk to me about the whole situation. When I mentioned that I’d taken some videos she asked me to send them to her, which I did. She offered to make an appointment for us with one of her colleagues at the office first thing the next morning, and we took her up on it and felt better knowing that someone would look at him the next day.
Well, awhile later, E’s doc called us back to say that she’d consulted neurology about his case, and she had a name for the walking issues he was having: ataxia. She’d even made sure that if the pediatrician who would examine E the next morning thought he needed more care a neurologist was ready to see us the same day. Of course, if you know me at all you know that I immediately fell down a Google rabbit hole. Reading about ataxia doesn’t make it less scary, but I did learn that the most common cause in toddlers is viral. Sometimes a virus just causes an ataxic reaction, and most of the time the kid just recovers with no further issues. This is best case scenario. There are a lot of worse case options out there.
So we went to the office the next morning (in the midst of a huge snowstorm) and the pediatrician confirmed that E needed an MRI to rule out some major possible causes. We were already guaranteed a spot in Kalamazoo, but the weather was really awful for traveling, and we were much closer to South Bend, so she called and got us a spot there, and we headed straight to admitting. I’d had a feeling that we needed to be prepared, so we’d packed overnight bags for all of us, and as much of E’s safe food as we thought he could eat that day. We were thankful for that as we checked in.
After being a perfect angel at the pediatrician’s office, E had a change of heart in the hospital, and definitely responded negatively to the hospitalist’s exam. But, eventually, they sent a nice woman with a tablet and a bubble gun to distract E (ha!) while they placed an IV and she stayed with him as they wheeled him down to MRI and even went into the room with him until he was fully asleep for the test. We took Baby A back up to E’s room and waited. When E came back, he was quiet, but not upset. He was ravenous, and we fed him most of the food we’d brought with us and then ordered him a full hospital meal (after asking MANY questions about the ingredients) which he devoured.
The results of the MRI and the subsequent blood tests all came back good, so they discharged E because there wasn’t much they could do for him and it would be much easier for him to relax and recover at home. Since major problems had been ruled out, they guessed that this was a case of ataxia caused by a virus. We were sent home with instructions to see the pediatrician again as soon as possible for follow-up and referral to a neurologist, just in case.
Over the weekend, we did see improvement, though E was still wobbly. We’re still waiting on an appointment with neurology, though we have the option to cancel if his symptoms disappear before it happens. He’s feeling great otherwise, but falls more than usual, and I find myself constantly analyzing his movements.
We know many of you have been praying for E and our family, and we are so, so thankful. Most likely, the ataxia will keep fading and eventually disappear. I’m not sure when my worry will fade, but I’m trying to only worry a reasonable amount. Thank you for keeping my little guy in your thoughts and prayers as he continues to recover.
I’m in the midst of writing a general update about life with two kiddos, and I will finish it someday soon, but so many of you have asked to stay posted on this, and we haven’t really been keeping up with letting people know what’s happening with E’s situation, so it seemed like it would be a good idea to write about it here. Thanks for loving our boy.