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 💚💚
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
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