baby with lyme disease

A Mom Shares her One Year Old Daughter’s Lyme Story

baby with lyme disease

A Young Mom’s Battle to get Lyme Disease Diagnosed in her
One Year Old Daughter

So when I vocalize about Lyme disease a lot it’s because of this exact day one year ago.

My then almost 12 month old was playing in our backyard in downtown in the CITY of Appleton, Wi. She was bit by a bug on her arm- twice. I’m 100% convinced mosquito but will never know. That night in bath I noticed it. Just looked like a normal mosquito bite. Then over the next 10 days it changed slowly.

I took her in [to the doctor]. It was dismissed as a normal bug bite. It wasn’t sitting right with me but I said ok. As it changed and changed I brought her in again. I was dismissed again.

She also had a rash on her face that I was told it was Impetigo by a local ped who GOOGLED for me while I sat with my baby in her office. She wasn’t sure but said it was NOT Lyme – just a bug bite. I knew she was wrong.

3 weeks after -the rash disappeared- bite was gone- symptoms began. High fevers out of no where. Not eating. Back to the doc we go. Was told “some kids just get fevers” “some kids just get sick”. I was fuming. I knew just knew it was this bite she had.

That night at 2 am my almost 12 month old had a seizure next to me in bed. I heard her clicking and jerking and screamed at my husband to call 911. She was so so hot. Chris frantically grabbed our seizing baby and ran downstairs. I screamed at the dispatcher to please get medics here!!! I thought she was dying.

My little girl laid there convulsing and the paramedic held her hot body and tried to console me. She wasn’t crying or anything and then she threw up everywhere. She was only in her diaper and we went into that ambulance where I pleaded with them to tell me what’s wrong with her. Her temp was 104 in the ambulance.

3am I get a talk from Doc how “kids just get seizures sometimes” “kids just get High fevers sometimes”. I felt her docs were failing us. I took home my sick baby. During this she was put on 2 weeks antibiotic. Just in case. I pleaded for longer.

She was so ill I took her to a pediatric dermatologist for her face rash. I said could this be Lyme. He said he wasn’t sure but if it was his kid he would treat. (Lyme treatment needs minimum of 6-8 weeks). She finished the two weeks and was still I’ll. Woke up again that following Saturday with high fever.

She had her second seizure in the docs office while we waited. She seized in front of me – ped on call and two nurses. They ran in with a shot of rochepin in her thighs. Once she stopped seizing and vomitted- they held her down and did a catheter and blood sample. I thought I would pass out. My tiny baby screaming for me and I couldn’t help her. I held her as I got the talk again! My head was spinning. ” some kids just get sick” ” some Kids just get fevers”. – did you know her so called fever that day was 98.5??????

By now we had seen 6 medical doctors and 1 pediatric dermatologist. No one said Lyme except a “maybe” from the derm. I was told her “rash wasn’t red enough”…”the ring wasn’t thick enough around the bite” and the rash on her face was just coincidence-exact words. I was done with these docs. Done.

I had Brynn privately tested through a lab called Igenex. They have the most sensitive testing in the US for Lyme. Waited 3 weeks for results. She tested positive for Lyme disease. I cried. Mostly cause I was sad but more cause I was relieved that my gut was right.

We met with a Lyme literate doctor who took us seriously. We learned what we thought were febrile seizures were more likely the Lyme bacteria attacking her brain. We had 2 months of active -consistent-treatment- antibiotics and herbal drops to help kill the Lyme. I’m so thankful for that man and what he did to help us.

I will have to watch Brynn the rest of her life and pray the Lyme is gone or at least at bay. We will never know. I am vocal because Lyme is scary and misunderstood. These nasty insects can transmit so many diseases. Check your kids your dog yourself etc. prevention is the only way …. Help out there for Lyme is small and people are dying. Insurances won’t cover it and these people fight to live every single day. #lymediseaseawareness 💚💚

~Jillian

I want to thank Jillian for sharing her story with us of her one year old’s experience with Lyme disease and the doctors who refuse to treat it. I had kids who got sick too and started having febrile seizures at the same age. Doctors refused to help us too here in Wisconsin. In fact my kids never got properly diagnosed and it took me fifteen years to get diagnosed. It is in sharing these stories that other moms and dads will find out what might be ailing their children. So thank you Jillian and we are so happy to hear your little one is now doing better. ♥

~ Lisa Hilton

For more information on Pediatric Lyme disease please visit:

Also See:

Pregnancy and Tick-borne Diseases: Gestational Lyme Charles Ray Jones, MD

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3 thoughts on “A Mom Shares her One Year Old Daughter’s Lyme Story”

  1. Hi Jillian, are you able to contact me please? I’d love to talk to you about your experience as my one-year-old has the exact same rash as of 2 weeks ago and we are currently treating with antibiotics. thank you!

  2. My daughter is 21.
    Do whatever it takes to knock out the Lyme. Looking back, I am OUTRAGED at what my girl has been through……..

    Healthy as a horse (not even an ear infection!) until 9 months old.
    BIZARRE SUDDEN ILLNESS.
    Sores filled her mouth, rash all over her body, except soles of her feet and palms of her hands.
    Herpes??? couldn’t be sure
    Mono??? maybe.
    Rubella??? rash fit the disease. Tested negative.
    Sudden Allergy Exposure??? Sitter took her to the park where she played in the grass – she suffered severe environmental allergies from then on.
    Lyme??? never really crossed our minds – until recently – I often wondered about the grass experience causing allergies, but in 1996, Lyme was only remotely on our radar,

    9 mo, 10 mo, 11 mo: Continuous ear infections. Antibiotic would start to work, then stop – then would start a new antibiotic.

    12 mo: Ear tubes. RELIEF. Fully expected to be home free.

    2 weeks later: Screaming with green mucous in ear canal. From there on, same pattern with infections and antibiotics.

    Many months later: After multiple ENT’s, one suggested VANTIN (CEFPODOXIME), combined with CILOXAN (cipro) drops in ears. It worked.
    Pediatrician said the issue with the antibiotics is her METABOLISM, not the bacteria. Urgent care docs were always horrified when I asked for VANTIN – never listened. Always had to return to her pediatrician, who always shook his head in frustration.

    Her whole life, we have to insist on VANTIN – now docs usually give in.
    (Same story for me, but that’s a whole other story).

    3 years – began multiple allergy treatments – helped with infection frequency.

    6 years – Tonsillectomy – so large (w/o infection) they blocked her throat. I witnessed apnea while she slept.

    Post Surgery – Horrid pain. Not relieved by narcotics (learned this was a pattern the rest of her life).

    Grade school – Missed over 30 days every year – attributed to the nasty infections she got when triggered by allergies. Took forever for her to feel better.

    Grade school – High School: My very strong and athletic daughter never failed to throw out a knee, ankle, wrist, back, etc… every time she got rolling in a sport.

    (BTW – I’M SKIPPING A LOT!!)

    8th Grade? – Mono – tests showed old AND new antibodies, so she had had it before.

    High school – POTS – DYSAUTONOMIA (why her and so many other kids in our Wisconsin school??? People asked me all the time, but school staff only harped to have her TRY HARDER to get to school, while Neurologist emphasized that too many of her patients over-use the Dysautonomia dx to stay home too much. Eventually, she had SINUS SURGERY to open passages – helped immensely in (finally??) healing from dizziness.

    – Test for Lyme – doc calls and says it’s positive.
    I think – THAT MAKES SENSE!!!
    Not so Fast. He needs to run a second test …… NEGATIVE.
    Really?? Are you sure this test is accurate? Seems like it would explain a lot.
    “Western Blot is the Gold Standard.”
    “…. but if you insist, we can put her on doxy for a few weeks.”
    Hmmm – after all this time, that treatment really won’t work, will It??
    “….. how about 2 months of doxy then??”

    Later that summer – she took the doxy and went to bed without thoroughly rinsing down.
    – Hospital stay – Esophageal Ulcer!!
    – IV morphine does NOTHING for the pain.
    – I want to CRY.
    (….. ++ had to get up in the middle of the night and leave the room —
    – TORNADO WARNING — SERIOUSLY??
    – minor distraction, but par for the course!)

    Fall, Senior Year – Mono – again. Caught it from drinking from her friend’s water bottle.
    – Took months, but she recovered well from the Mono.

    Spring, Senior Year – Returned home from Caribbean Dive Trip – she went last year too. (telling you, this is an active, supposed to be healthy, not wimpy – 6′ tall, athletic, beautiful girl).

    – 3 days after returning home, deja vu on the sinusitis.
    – eventually surgery to open things back up – some improvement.
    – close to graduation time – still can’t stand up to go to school.
    – Teacher finally visits her at home to get her through a required course for graduation. FINALLY! Someone witnesses how seriously ill she is. After 30 minutes sitting across from her at the table, teacher says, “that’s enough. You look like you really need to lay down.” Outside later, teacher says to me, “She’s REALLY sick!!”

    Graduation – barely makes it to ceremony, but won’t sing with choir (I’m heartbroken) as she’s afraid she’ll pass out.

    College – Year 1. NO!! No college until after taking 1 1/2 years to heal from:

    – Chronic dizziness. (December – tried a job –
    – quit after passing out and hitting floor
    for the 3rd time at the cash register).
    – Knee – often a problem, but now causes SEVERE pain to walk.
    – P.T. – same doc, same P.T. – many previously successful P.T. routines
    – NOT THIS TIME.
    – Interesting KNEE SURGERY – Portion of tendon was chronically “inflamed” and not healing, so the doc “scraped away” the inflamed portion of the tendon in the hope that the healthy part would grow and fill in what was scraped away.”
    – It worked, but took a long time.

    EVENTUALLY – wild obsession with healthy eating and mega-exercise (in addition to 30???sessions of CARDIAC REHAB), she’s getting back to normal.

    ALSO – CARDIOLOGIST prescribes beta blocker, which after numerous other Rx attempts, is effective at regulating heart rate.

    FALL, 2015 – Starts college after 1 1/2 years sick and convalescing.
    – 4.0 GPA – first time in her life she went to school w/o major absence.
    SPRING, 2016 – 4.0 GPA
    FALL, 2016 – 4.0 GPA
    +++ many friends, much physical activity, leadership roles on campus.

    DID SHE KNOCK THE LYME OUT WITH HER INTENSE FOOD/EXERCISE PROGRAM???

    I’m now (just since recently researching) convinced LYME has caused chaos her whole life!

    She’s not alone. But her sister’s (cardiomyopathy, etc…) and my story (disabled since 2007) are for another time.

    I AM GRATEFUL FOR EVERY DAY SHE FEELS WELL !!!

  3. jillian,
    my heart goes out to you/your family for what your daughter went thru to get diagnosed and her seizures.

    thanks for sharing your story with us all.

    hugs/prayers,

    bettyg, iowa activist

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