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Cayce playing with a friend on Nantucket

Reading Between the Lines of Lyme in My Preschooler

Cayce on the day he saw the infectious disease specialist, two days before starting a new treatment
Mouth rash
Passed out at the ER while waiting for the results of another strepp test
Climbing again! So much for that fear of heights. 1 week after starting treatment.

Recognizing an enigmatic and cunning illness like Lyme Disease can be challenging in the adult population, but it can be especially difficult to discern in a young child. Three- and four-year-olds haven't had enough life experience, or developed the verbal powers of description to express everything they are experiencing. In children we have to rely more on the signs, the outward manifestations of illness, as opposed to symptoms described by the child himself.

This is the story of how Lyme Disease took down my three year old, now four year old. And the story of his new road to recovery.

Here are before and after pictures. My four year old son on the day we visited an infectious disease specialist for his Lyme Disease, before he started his new treatment, and playing with a friend a couple of days after starting treatment. 

I know I am his mother, and I'm not as objective as others may be, but I see two different children in this two pictures. I see in the first picture a sweet but visibly weakened child, chilled, holding his legs like he has to pee.  My high climber who had begun talking about his fear of heights.  Who'd been waking up for days on end with a funny sounding voice and swollen glands only to sound normal again by midmorning. Who finally developed a throat so sore he could barely swallow, though he kept testing negative for strepp. Whose legs froze up when he got out of his bath a few days before, so he had to be carried to the ER.

In the second picture I see my son, the boy I've always known, a boy with a certain vigor and shine, a certain twinkle in his eye and dimple in his ever present smile.  In the second picture I see my son, returned to me only two days after starting a new course of meds for his Lyme Disease.  The boy whose teachers are now telling me is having "a lot of good days."  A boy who had changed from fussy to "mellow."  In the second picture I see the boy who has bounced back like a re-inflated ball. Climbing up on everything, climbing high. Seeing the change, I realize how he had lost his interest in climbing. In the second picture I see the boy with stamina who is not constantly panting. In the second picture I see our boy, our bright, mischievous boy returning to us.

MY FOUR YEAR OLD'S STORY

In many ways my son has appeared to be a typical kid, even after his tick bite. He's cheerful, imaginative, alert, energetic and active. I have been the proud mother of a very healthy, happy, intelligent kid.  I was looking through his medical reports recently, and the comments from every doctor or nurse practitioner, even when I was bringing him in due to illness, involve the words of observation "alert" and "active."   He wants to know what all the doctor's instruments are. He was saying "stethoscope" before he was two. He doesn't fear the doctor's office, but he wants to touch every button, every lever, everything that pulls out on the wall.

He seemed typical and normal on the surface. Energetic, happy, ran his way into school every morning. But as his mother, I know him better than anybody, and I sensed that his health was off. He didn't have the stamina he'd once had. He was always panting and out of breath, even when he hadn't done anything that physical to warrant it. There were a couple of nights right before his recent bout of serious illness when it seemed to me that he was panting in his sleep. His breathing was completely irregular and shallow.

I regret that I didn't instist that Cayce start on antibiotics right away, instead of waiting until three weeks after his dad pulled the embedded tick out of his back, when symptoms started to show up.I had brought him into the the nurse practitioner, but I guess the thinking was that since he hadn't presented a rash, no need to treat.. But exactly three weeks after his bite he woke in the night, complaining of a headache. The next night he had a fever. His balance seemed off when he got out of bed.

I took him right back in and they started him on the amoxycillin. He never did present a rash. He finished out his three week course of amoxy, and a couple of weeks after that, we had him tested with the test order that the NP had written for us when she wrote him the scrip for the meds.  The test showed he had Lyme antibodies still in his system, confirming that he did in fact have Lyme. So, no rash ever presented. And yet, confirmed case of Lyme.

The doctor (not his regular doctor, but the one in the office that had overseen all three members of the family after our tick bites last summer) advised to watch him, and have him retested in a few months. She said, "Since he's three, and children can't advocate for themselves."  She also said that the titer could go away, or it could grow.

SIGNS AND SYMPTOMS CREEPING BACK UP

I had him tested two months out, because troubling symptoms began to creep up.  The test was negative, but the symptoms persisted.

The problem is, sometimes the titer doesn't just grow, but it hides where it can grow undetected.  The spirochetes move into the cells of our bodies,  showing no trace of themselves in our blood.

A NEGATIVE TEST IS NOT A CLOSED CASE

The nurse in our doctor's office called back with the negative test results. "The results are completely negative," she said.  "Which is great!" i guess I was supposed to be reassured. But she never even asked me about his symptoms.

In her mind, as in the minds of most mainstream doctors and nurses, the fact that the test results were negative was an "open and shut case."  As if there was nothing further to discuss. Test negative. End of story.

So this was the time for me to part ways with unseeing and nonlistening doctors. It was time for me as his mother to stop listening to the hollow reassurances. It was time to start listening to my heart. It was time to take action.

I called the the primary care doctor's office and let the receptionist know that I wanted all of my son's paperwork released to the same infectious disease doctor on the Cape that I was waiting to see.  If I had to make a second trip over for him, I would. If I had to borrow money from my family, I would.  I would do whatever it took.  Because my partner and I knew what perhaps only we could know...that our small son's health and quality of life had declined in the three months since getting bitten by that tiny tick and since finishing his 3-week course of antibiotics.

SWOLLEN GLANDS, THROAT ISSUES

About a week after starting school for the first time, he woke up with swollen glands that made his voice sound funny.  His dad stayed home with him, while I went to my first day of work at a new job.  In the afternoon, still sounding and looking glandy, I took him into the ER (getting a same day appointment with a doctor or nurse is generally impossible here). They gave him a strep test, which was negative. His mild temp had gone down, and they said that he could go to school as long as it was 24 hours post-fever.

He still sounded funny with the glands the next morning, but I brought him to school, explaining to his teachers that he wasn't contagious.  By the time I picked him up 3 hours later, his voice had returned to normal, his glands drained. This pattern persisted for  several weeks. Glands swollen in the morning, then clearing after he had been up for a short while. When we visited my mother in New York over Columbus Day Weekend, this was still going on.

BREATHLESSNESS/PANTING

My mother, with her fresh eyes, also noticed that he had become completely breathless after running a short block in her neighborhood.  I told her that I had also noticed that he seemed out of breath a lot. It's easy enough for his teachers and day care providers to interpret that as just being an excitable kid. But I knew as his mom that this was not his normal.

And yet at the same time, when I see my child every day, it can be hard to see it, hard to discern the small changes. 

URGENCY TO PEE/FREQUENT NEED TO PEE/CLOUDY URINE

I also noticed while I was with my mom that he seemed to need to pee all the time, and that when he did, he peed a lot.  Also his pee was always cloudy.  But that could be chalked up to other things- the change in routine, the traveling...On the subway to the Bronx Zoo we had to get off the train in Harlem because suddenly Cayce had to pee, and couldn't wait.  At the zoo we stopped at the bathroom on the way in, and also on the way out, but still Cayce couldn't make the trip back to my mother's apartment...while we were waiting for our connection at Times Square, he kept warning me that he had to pee, and I couldn't bare the idea of the restoom in a stinky subway. I told myself I'd rather have him wet his pants. We were almost home anyway, where we could change. "Uh oh, I'm going to pee," he said. But I wasn't expecting the gushing river that welled up in the groove between the cement tiles and streamed toward unwitting bystanders. 

MOUTH RASH

Then about a week after we got home, after eating breakfast one morning, Cayce said, "Mommy, something's wrong with my mouth."

His lips were so red and inflamed they looked as though he had put on lipstick. Some friends observed, when they saw a picture of his lips, that he looked like he had a case of chapped lips.  Of course I thought this was plausible, even though in his four years of life he has never had chapped lips. Even our romps in the snow sledding last winter never produced chapped lips.

I brought him to the hospital that Saturday morning, hoping the children's clinic would be meeting that day. We found a doctor we knew walking through the otherwise empty halls. I told her about the rash on his mouth.  She glanced at his face and said,  "It could just be a skin fungus.  It could be a food allergy."

"But he's never had any allergies," I said.  I mentioned the tick bite over the summer, and I also told her that his most recent test was negative.

"Well, that's good!" she said.

Again, I was supposed to be reassured by the negative test.

She said, "If it's still like that on Monday, bring him in and I can prescribe a cream for him."

He did still have the rash on Monday, but I didn't have much interest in a topical cream for something that I sensed was systemic. 

Two weeks later his lips are still chapped an inflamed.  I had started to no longer notice, then one day while I was driving him and a friend he hadn't seen in a while, he suddenly announced to her in the back seat: "My lips have been sore and hurting for twenty days."

Whoah, I thought. He hadn't complained about them, so I didn't realize that they had been hurting him.

At the same time, his swollen gland mornings morphed into hoarse mornings, his voice cracked and squeaking. He would sound like a forty year old pack-a-day smoker when he first woke up, until he had been up for a little while and his voice would resume normalcy.

EMOTIONAL/COGNITIVE SIGNS

There were other signs that things were off for him-- not just physical ones. He was fussing and melting down a lot more than usual. He was also regressing developmentally...He had always been a great climber, and suddenly he was saying that he was afraid of heights.  It occured to me I hadn't seen him climb in a long time. Also, he had stopped referring to himself as "I" and had begun expressing his needs in the third person.. "Cayce want chocolate," he would say all the time, when he had long ago stopped talking that way.  Also, while he had known how to sing the alphabet song for a couple of years, and was identifying most of the letters, he now got the letters all mixed up when he sang the song, and he was identifying very few of the letters.  One day he said to me, very matter of factly, "I always itch all over my body. I itch all the nights and all the days." 

It could just be....It could just be...it could just be....

True, true.  But it also could possibly NOT just be... it could possibly NOT just be chalked up to these small, seemingly harmless causes...starting school for the first time, allergies, skin funguses...It could in fact be something much more serious, and much more sinister. It could be sometnhing that would gain traction and grow increasingly difficult to treat while we sat there nodding "yes" to all the reassurances, while we sat there on our hands doubting ourselves.

TAKING ACTION

We got lucky because the specialist I had been waiting a couple of months to see called a few days after receiving our son's paperwork. They had a slot available for him within a few weeks' time.  Even better, they were able to bump my appointment up a few weeks so that I could be seen at the same time as my son, avoiding the time and expense of making a separate trip.  And since I myself had been feeling increasing worse, I was relieved that my wait would be three weeks shorter. I sat down and cried and felt the relief wash over me.

GETTING WORSE WHILE WE WAITED

The weekend before our doctor's trip, my son got very sick. He woke up on a Friday morning a couple of weeks ago and said his throat was sore. Also, he had a mild fever. He was having trouble swallowing and couldn't eat and he was exhausted. Even the kefir smoothies I was giving him were going hardly touched. Swallowing anything seemed extremely difficult.  He was still nursing, so I knew that he would probably not get too dehydrated. But I had frankly become concerned that my Lyme was being secreted through my breastmilk. I had heard and read conflicting reports.  Deep down I wanted to trust that his interest in continuing to nurse meant that he must still be benefitiing from it.  I let him nurse as much as he wanted to that weekend, knowing that this would probably be the last time he would be able to do so since I would likely be put on strong meds. (In fact, as I learned later, I had already risked his teeth yellowing due to the doxycycline that I had taken for a total of 6 weeks. They hadn't yellowed, but I knew that a longer course of antibiotics would pose a greater risk of that. )

On Saturday, I helped him get his pjs off to get into a bath. He'd been wearing the same clothes for two days. When he stepped out of his pjs, his knees were purple. As he walked into the bathroom, he seemed unsteady.

"Are you having trouble walking?" I asked.

"Yes," he said.

When he sat in the warm bath, he got goose bumps. It didn't surprise me, since he had been feverish. He asked me to feel the tub higher, "because I'm chilled," he said. 

A few minutes later he stepped out of the tub. He didn't stand on the ledge to jump off, like he usually does despite my telling him not to. No surprise there. He'd been sick, and was clearly weak and unsteady on his feet. But once out of the tub, he became so chilled that the muscles in his legs seized up.

"Mommy!" he cried. "I can't move my legs."

I wrapped myself around his wrapped towel to warm him.

"Can you walk?" I asked him.

"No," he said.

His body was rigid as a board. I picked him up and I could feel the hardened muscles of his unmoving legs. I sat him on my lap on the couch, still feeling his rigid legs which wouldn't bend with my legs as we sat.  I called out for his father, trying to hide my alarm.

(Over the summer, when my son, then three, had first begun the meds for his tick bite, he had a "herxing" reaction as the toxins were breaking down in his body, and walked like his legs were rubber bands for a day.)

I held him on my lap in the back of the car on our short drive to the local hospital. When we got out, he still wouldn't let me put him down. He wrapped his legs around me. But by the time the admitting nurse asked him to get on the scale, he got up from his chair of his own accord and walked over to the scale.

We were put into a room, and had to wait for almost an hour before the doctor came in. He had started to fall asleep-- not a regular kind of falling alseep- his eyes seemed uneven, and they were rolling up into his head.  I called out to the nurse at the station, saying that I was concerned because he was falling asleep. "That's okay," she called back, not getting up.

"Well, no," I said, "I don't think it IS okay." And I went back to my son, and kept talking to him to keep him awake.

Moments later the nurse walked into the threshold of the room demanding, in a loud, accusatory voice, "How much motrin did you give him?"

"A teaspoon and a half," I said.

She turned on her heel, repeating my answer to someone else outside the room I couldn't see.  She had never even approached my son's bed to lay her eyes on him closely.

The attending doctor at the ER said that the lab had already closed up for the day, so they couldn't get results on the strep test right away. He wrote me a scrip for antibiotics "in case it comes back positive, so you won't have to come back in."  He never asked my son to get off the bed and stand up. He never watched him take a few steps even though the reason I'd brought him in was the temporary loss of mobility to his legs.

Cayce threw up that night and again in the morning. My partner's sister suggested that we fill that scrip and not wait for the results. I thought that made sense. If he needed it, it would start working right away.

He started to rebound pretty quickly on the antibiotics. He still struggled to swallow, but his fever disappeared and he regained some of his strength and energy.

Yet the lab test for strep came back negative. Which meant that his illness was more likely viral, and not bacterial. Yes, the antibioctics were helping him. In my mind, I felt the meds were addressing another bacterial condition-- the one called Lyme Disease. The spirochetes in his body were wearing down his immune system, making him susceptible to other illnesses.

FINALLY ON THE MEND

Once the infectious disease specialist put my son on a higher dose of amoxycillin, 400mg as compared to the 250mg typically prescribed, Cayce rebounded almost overnight.  I may be his mother but I'm not the only one who's noticed it. His father has noticed it. His teachers have noticed it. And friends and and relatives have commented that he looks like he's feeling better in the pictures I post.

We can hear the changes too. He refers to himself in the third person only occassionally now, and has resumed his use of the first person "I."  His stories are longer, his descriptions more detailed, and there's been an uptick in his songwriting and imaginative play.  Also where he had a reluctance to write (his teacher commented that he had weak hands), he is interested in writing a lot more, and initiating "letter drawing" sessions on his own.

He is sleeping through the night, sleeping deeply and soundly. At first I was so unused to the quiet breathing as opposed to the high rapid breath I had to nudge him to make sure he was still alive.  Now I understand that his body is finally achieving the state of rest it is supposed to achieve at night.

Cayce held a dessert plate up with one hand, perched flat across his finger tips.

"Look Mommy! I can hold this plate with one hand!" he chirped.  "I'm getting big!"

"Wow! Look at that!" I said. "You could be a waiter. Do you know what a waiter is? A waiter serves food in a restaurant. A waiter or waitress."

"But I was going be a potion maker," he said, without missing a beat.

A laudable profession, I must say.  I am so grateful for medicine, for the simple, common potion of antibiotics. And for the doctor, rare as a diamond in the rust, who will prescribe it to us.  I'm so grateful to him for returning our son to us. And grateful that he is returning me to myself, to be a healthier person and a better mother to this amazing and precious little being.