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About 4 weeks ago, Baby Kinsley’s mother Jasmin Spears reached out to us. Just like many worried mothers before her, she was utterly worried for her daughter’s well-being, confused in a vicious loop of symptom-treating & misdiagnosis. Luckily, our CEO Kristie Griess was able to direct her to Dr. Millichap at Luries Childrens Hospital. This is Kinsley’s full story.
Jasmin Spears is a married mother of two beautiful little girls, Londyn and Kinsley. London is five years old and Kinsley is just seven months new. On Monday, December 3rd of last year Kinsley was taken to her pediatrician and received immunization shots according to schedule. She was expected to be a little fussy for a few days, but her uneasiness lasted for more than a week and the longer it lasted, her condition worsened. Unfortunately, it had progressed to a point in which Kinsley would cry for hours at a time, until she seemed to exhaust herself to sleep. The following Friday, the 7th, Jasmine and her husband took Kinsley to the Immediate Care where the baby was examined and discharged with the words “She looks great and is just fussy from the shots and teething.”
That Saturday, while Jasmine was at work, her mother-in-law called to inform her that Kinsley had been making a strange type of motion and to ask if Jasmine had noticed her doing it recently. Jasmine replied in the negative and asked her to call me back if it persisted. Monday evening, the 11th, Jasmine first witnessed Kinsley making the strange motions her mother-in-law had warned her about. To Kinsley’s Mom, they seemed not only strange but painful. She asked her husband to record Kinsley having an ‘episode’ on her cell phone. Instantly, she contacted her doctor and explained to him what she had witnessed. The doctor asked to see the video and after seeing it he said that it looked to him like “Moro Reflux”, and said that there was nothing to worry about. The worried couple Googled “Moro Reflux”, and noticed that Kinsley’s movements were very similar but not the same.
While dropping Kinsley off with Jasmine’s mother-in-law on Tuesday, the 12th, Kinsley began to make the motions repeatedly every couple of seconds in clusters. It was then, that Jasmine knew something was wrong, and that it was time to get her to the nearest Emergency Room. They dropped Londyn off at school and headed to Edwards Hospital in Naperville. Kinsley was seen by Stephen Crotty, the pediatric ER doctor. After watching the video of Kinsley’s movements, Dr. Crotty said it could be spasms, so he wanted to start an IV and get an MRI plus a 24 EEG.
“Now I knew it is serious, because they came and put an IV in my baby’s tiny arm. I just remember looking at my mother-in-law and starting to cry, just the thought of her tiny body being stuck and in the hospital was too much for me to handle. I immediately informed my husband of the situation and from there everything went really quickly.” remembers Jasmine.
After starting the IV, Kinsley’s family got admitted, and started seeing Dr. Taaha Shakir, who proceeded to explain that Kinsley could possibly be having spasms and that she was going to begin 24 hour surveillance EEG. Dr. Shakir told them that anytime they saw Kinsley doing the jerking motion to press the button on the EEG. Jasmine and her husband did press the button and noticed big movement on the EEG when that happened. Unfortunately, they did not know what that meant until the next morning. Kinsley’s neurologist, Dr. M Ammar Katerji, came in and confirmed that it was infantile spasms due to what he had read off of Kinsley’s EEG. The family had to be be transferred to a children’s hospital who has ACTH which is specifically used to treat infantile spasms. On Thursday, December 13th at 3pm Kinsley was transported by ambulance to Lutheran General Children’s Hospital in Park Ridge.
When the family arrived at Lutheran General on Thursday, December 13th, while getting Kinsley’s vitals, Jasmine spoke with Dr. Luda Sorin (neurologist) when the couple noticed that Kinsley started doing the cry that she does while she is having her spasms. Jasmine stopped mid-sentence to inform the doctors and nurses that baby Kinsley’s was having spasms. The doctors and nurses stopped what they were doing to get their own view of what her spasms looked like. They also timed them. After that they saw multiple doctors. Baby Kinsley was attached an IV with anti-seizure meds in it, hoping it would help with the spasms. The next day they began drawing blood and also did an echo of her heart. That Saturday, the 15th, Kinsley started ACTH. The parents met Dr. Sorin’s partner, Dr. Farha Tokarz (nero), who was very upset that Kinsley’s IV was removed and that she was not getting the phenobarbital. Dr. Tokarz also informed Jasmine and her husband that once Kinsley goes home that she will be taking the following three medicines – ACTH, acid reflux meds, and phenobarbital. She finished by saying that Kinsley would need to follow up with an EEG two weeks after being released from the hospital.
On Sunday, December 16th, Kinsley’s parents were informed that they were just waiting on the insurance to approve the ACTH. Monday, Dr. Tokarz told them that while Kinsley was taking ACTH, a nurse would be coming to the house twice a week to check weight, blood pressure, blood in stool and glucose in urine. Jasmine got word that the insurance approved the ACTH, so she was now waiting for it to be shipped and brought to the hospital, so the pharmacist can confirm that they have all the necessary supplies for Kinsley to go home. Wednesday, the meds arrived and the pharmacist went over everything. They then get the approval to take Kinsley home. Kinsley was doing good on the shots, she went from getting them twice a day to only having to take it once a day.
On Friday, January 11th, Jasmine’s mother-in-law sent her a video showing Kinsley looking to her left side and doing an eye rolling movement with her left arm, in particular, going up. Her neurologist was instantly informed, who replied that Dr. Sorin would call back right away. When the Dr. did not return the worried mother’s call that day, after multiple tries, Jasmine proceeded to call Kinsley’s pediatrician who directed them to the ER. The ER and informed the mother that everything looks normal and to follow up with her neurologist on Monday. Monday the 14th Kinsley’s neurology staff told Jasmine that she would call back, which shedid not do. Jasmine called again on Tuesday and it was then that her staff informed that she was out and that she was ill the past couple of days. On January 15th, Jasmine got in touch with the neurology staff over the phone, who suggested that Kinsley is having focal seizures and asked the mother if she wanted her to prescribe Kinsley something for, until she can see her. Jasmine declined the offer, wanting the neuro to see Kinsley first. The doctor agreed to see Kinsley the following day, the 16th.
Jasmine started looking up infantile spasms support groups while at work and came across the Child Neurology Foundation and got in contact with a woman named Kathy Leavens who is a support specialist that directed her to the Mickies Miracles website. She started going through the site, and reading the testimonials, when she became curious to know more, so she filled out our form. The anxious mother received an email back stating that someone will be in contact soon. Within an hour, our CEO Kristie Griess personally contacted Jasmine, and asked her to describe more about Kinsley’s condition.
“As a mother the fact that I received a call the same day, within an hour was a blessing to me, I felt so relieved.” Jasmine shared with Mickie’s Miracles.
When Kristie offered a second opinion, both Jasmine and her husband to open to that idea. Kristie directed the fortunate couple to Dr. Millichap at Luries Children’s Hospital. About 30 minutes later, Dr. Millichap followed up with Jasmine, offering to see Kinsley. Jasmine and her husband ended up taking Kinsley to see the doctor, that same night, on the 15th.
“…they ran test that the other hospital did not, they were just really on top of things. It was such a great team of people, we also saw Dr. Millichap and he talked to us about the Ketogeneic diet after she finished the ACTH. My husband and I discussed it and decided to go with the Keto diet as the next treatment. January 24, 2019 was Kinsley’s last day on ACTH, she recently had her follow up EEG on February 6th where I was told her EEG shows no more spasms but has some abnormal spikes which will hopefully be treated by the Keto diet which will start later this month.”
That is Kinsley’s journey thus far. Thank you for letting us share it with you.
If anything in baby Kinsley’s story spoke to you, let us know down in the comments! We LOVE to hear from our readers. Do you have a story to tell? Contact us!
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