Share the first part of LuckyJoJo's story for readers on Sleuth! When and why did you start to feel concerned?
Lucky started experiencing infantile spasms about 2 months ago, when she was just 3.5 months old. They were subtle movements that I only caught because 1. She is our first baby- so we stare at her all the time and 2. It was happening in a cluster. Prior to these spasms, Lucky seemed to be slow in reaching milestones (although she was still very young), but was healthy.
Share the first part of TT Bear's story for readers on Sleuth! When and why did you start to feel concerned?
There are some hiccups early on that, in retrospect, were signs of the start of our journey. When TT was two month old, the pediatrician noted positional plageocephaly and torticolis. It was at this time that he began being followed by an orthotist and weekly PT. At six months the PT began using the words hypotonic and low tone to describe TT's muscles. At his six month well visit it was found he had only gained 4 ounces since his four month well visit. Up until that point he was exclusively breast fed. I immediately switch to bottle feeding (which was part of my plan anyway) and saw how little he was actually eating. After a couple weekly weight checks the pediatrician labeled TT failure to thrive (FTT), ran some preliminary blood work, and told us to schedule with GI and genetics.
Share the first part of BubbaBuddy's story for readers on Sleuth! When and why did you start to feel concerned?
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Share the first part of Weasy's story for readers on Sleuth! When and why did you start to feel concerned?
My eight year old has been pooping in his pants and has been wearing pull ups 24/7. This has been happening for over a year now. We've been to a primary care doc, a GI doc, psychiatrist & therapist as this issue both mental and physical. As of now he has been taking daily laxatives to keep his system clean. We had an x-ray that showed his colon was backed up and impacted. The GI says when the colon is so full for so long the nerves loose the sensation to go. A functioning system when full will send signals that it's time to go, When it's empty the sensation goes away. My son says he can't feel when he has to go so we have a routine that he needs to go sit on the pot at regular intervals to prevent him going in his pants. As for the mental side, he does have and IEP at school for developmental delays. He also is adopted and lost his biological sister almost 2 years ago. On top of which we've been dealing with COVID for a year now.
Share the first part of Emmita's story for readers on Sleuth! When and why did you start to feel concerned?
At about 6 years old, E was making repetitive noises, it started with humming, then we noticed throat clearing. It eventually evolved to other repetitive sounds and phrases. Then we noticed repetitive movements, head shaking, mouth widening, rapid eye blinking. This caused us to look even further back, old photos/videos and we noticed things that were a little “odd” in the past but we didn’t exactly think of as a big deal may all have been a correlation to what we were noticing now: motor and vocal tics.
Share the first part of JK9's story for readers on Sleuth! When and why did you start to feel concerned?
She was mentioning a tightness of the chest, feeling tired and ‘unwell,’ and a fever of 40-42 [celsius] that I treated with Tylenol/Advil and cool baths but couldn’t shake. At the 48hr mark I called my Dr. and she suggested we go to the Hospital for a chest X-ray in case it was asthma related. The X-ray showed some reactive passages, but as we waited in the waiting room for the doctor to see us her Tylenol/Advil wore off and her fever spiked and she was face flushed face, grey lips, dizzy, started vomiting, admitted she was feeling really unwell.
Share the first part of France's story for readers on Sleuth! When and why did you start to feel concerned?
I had COVID starting from July 13th. While my family wasn't tested, I assume they all got it, too. France got a fever starting on July 16th. I started to get concerned on September 4th when she returned back from school saying, "I am hot." Her temperature was 99.4. I called the clinic and asked, "Should I be concerned? Is it a cold? What should I do?" My daughter told me not to worry. They were out in the sun at school then went back inside where there was A/C, so she said that the drastic change in weather probably made her sick. The nurse told me that if the temperature gets higher, I should go to the ER. I couldn't do much. That evening, we went out for dinner. She fell asleep in the car, and her eyes were starting to get red. I woke her up in the restaurant, but she kept putting her head down. I kept telling her to eat - she's normally not a picky eater - but she said, no, I'm tired. She started eating a cheeseburger and she then she vomits one time. As I saw her vomiting, I lost my appetite because I was worried something was wrong. I told my husband, let’s just go. I’m going to rush her to the hospital, let’s see what’s going on. I feel like she got COVID again. I thought she had a cold. I'd tell her, 'let’s go to the hospital,' but she said, 'No, I feel better." I went home, took her temperature and gave her Motrin. She broke the fever every 8 hours. Then at 5am, another fever was kicking in. I gave her Motrin, another 8 hours later it stopped, and then started at 6pm again. As soon as I took her to the children's hospital, her fever was at 101, and had started having diarrhea. She had pain when she was eating so whenever she was eating, her stomach would hurt. Whenever she coughed, her chest would hurt. I told them everything and they told them she had COVID. They said that it looks like just a stomach bug, if she doesn’t get better in 2-3 days, then bring her back. On Sunday, you know, we to grocery shop, and we made breakfast. She’s a good eater, she’s not picky. I notice she didn’t want to eat anymore. "I'm just going to drink. i’m not hungry. It’s just that my tummy is hurting." The next day, on Labor Day, I took her to children’s hospital in northwest. By now, her fever would've otherwise be broken; she’s good at breaking down fevers by 2-3 days. She’s now having stomach pain when she eats, more diarrhea, vomiting more often, eyes were super read. "No, Mom, it’s still a stomach bug. It’ll last up to 5 days." I felt like i was walking out with no answers. My gut was saying there’s something wrong and they wouldn’t help me. I called my husband as soon as I got out, they say it’s a stomach bug. He said, they’re probably right. I know that when she’s sick and something is an infection, it doesn’t get treated right away, the fever doesn’t go away. I recognize my child. My husband and I were listening her sleep. She was breathing like she’s running. I woke her up and she said my tummy is hurting really bad, it’s hurting a lot. I took her to another hospital, Washington Regional hospital, and I told them, you know what, she has been in children’s hospital with a stomach bug. They said: we need to take her to the COVID ward, this is how COVID starts. I said, "this is not COVID, we already had it in July. The time lapse is too soon to rewatch it because she should still have antibodies. They said, "Nope, we still transfer to that COVID section. We’re still going to do that." At that point, i didn’t know what to argue. They’re the doctors, they know more than I do. I had the baby with me and her sibling. so they do a CT scan, bloodwork on her, and it comes out to be she had an inflamed gallbladder and liver. In the CT scan, it showed she had a fatty liver. She had really swollen lymph nodes on her stomach. She was super dehydrated. She wasn’t eating anymore. She quit eating. Even water would hurt her stomach. Anything she ate hurt her. And she would get nauseous.
Share the first part of CAChild's story for readers on Sleuth! When and why did you start to feel concerned?
It literally began on a Monday, my son was feeling weird. Unfortunately he is non-verbal so we had a difficult time knowing what he felt. On Monday around noon it began. He was crying and it was not for any of the basic reasons so we thought he was just having a bad day. In the evening is when it really began, a really high fever got ahold of him and no medicine helped bring it down. His fever went up to 103, he was severely dehydrated and had loss of appetite. He started getting weak and was tired all the time. We were able to control it with wet towels and a lukewarm bath. It would go away for a few minutes and then back up, we gave him Tylenol and Motrin but it barely scraped the surface of bringing it down.
Share the first part of Pawishhh's story for readers on Sleuth! When and why did you start to feel concerned?
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Share the first part of Bella's story for readers on Sleuth! When and why did you start to feel concerned?
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