Stand by Kyra Loehr: Battling Life-Threatening HLH

I Am looking to raise money for my Dear Niece Kyra’s ongoing medical expenses and her family. She is battling with ongoing horrible medical issues and her family is staying by her side ongoing.

Kyra had been diagnosed with epilepsy at the of 14. A few weeks ago, she started a new epilepsy medication called Lamotrigine. She was on Lamotrigine for 12 days. Last week, Kyra went into the Mercy emergency department twice for Covid, she had a temperature of 104°, she was given fluids, her temperature came down, and she was sent home. She was brought back into the Mercy Hospital emergency department on Saturday, June 14 and admitted to the ICU. Her Seizure medication Lamotrigine was discontinued. She became very sick and unresponsive and at that point multiple medical issues started to arise. She was transferred to the Regions Hospital ICU in St Paul for better care. 

 

The team of doctors there found out that she has a rare life-threatening Disease called Hemophagocytic Lymphohistiocytosis (HLH) it has a high fatality rate. https://www.hopkinsmedicine.org/health/conditions-and-diseases/hemophagocytic-lymphohistiocystosis

Her Seizure medication Lamotrigine was discontinued and may have been one of the contributing factors that could’ve led to her HLH. Kyra has been in the ICU for multiple days now, she has had multiple MRIs and CT scans and ultrasounds. She has been on a breathing and feeding tube along with multiple IVs, brain monitoring equipment and several antibiotics and steroids. Kyra has multiple medical issues she is battling with, including pneumonia, viral and bacterial infection, her liver is failing, she has an inflamed gallbladder, and a clot between her liver and kidney tested positive for Skogen’s syndrome and rheumatoid arthritis.

 But not sure what the cause of the HLH is. So they have more testing to do!

She is currently not sedated, but still unconscious, her temperature is up again and she is fighting hard. She is on the HLH medication Anakinra. On day one of taking the HLH medication she was given 1200 mg. Day two she was up to 2400 mg and now she is up to the maximum dose of 3000 mg. After that  maximum dosage they are not sure what  options are next because the disease is so rare!

 

She has one of the best teams of doctors that we could ask for including Dr. Elie Gertner, M.D., who has written multiple medical journals and papers on HLH in which the Mayo Clinic uses and Dr. Anthony Frattalore, M.D. in Neurology. 

 

We are praying hard all the time for our Sweet Dear Kyra.