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G's Son

G's Son

Male / 6 years & 6 months

Share the first part of G's Son's story for readers on Sleuth! When and why did you start to feel concerned?

When my son was newborn (a day or two old) he had what I know believe to be spasms. I videoed it and showed the doctor, and I was told it was startle reflex. Nearly six years down the line, my son has cognitive and language delay and motor stereotypies. He is waiting to be assessed for autism, but nobody seems to be able to put their finger on the cause of his issues. He is very sociable and has great eye contact, and apparently has some traits of autism, but also traits that don’t fit the autism diagnosis. I’ve been treating him biomedically for the last three years, and he is making good progress. He attends mainstream school, with a full-time one-to-one assistant to support him. Obviously I want the best outcome for him, and don’t want to miss anything.

MyPerfectGirl

MyPerfectGirl

Female / 3 years & 10 months

Share the first part of MyPerfectGirl's story for readers on Sleuth! When and why did you start to feel concerned?

During pregnancy I barely felt her move. But scans always showed a healthy baby. At 3 months she was diagnosed with Plagiocephaly (flat head) while in hospital for a respiratory virus. So we were referees to to a neurosurgeon, who said it would correct itself and she was dismissed until 10 months when I emailed photos back to the neurosurgeon of how bad her head had gotten. They called us in for an urgent appointment the next day and she was diagnosed with brachycephaly (her head protruded severely on one side from laying on it all the time) and had to start helmet therapy. Other than that I was worried as she was not rolling or sitting like my first child had, so I’d been taking her to different general practitioners and 3 Physios, but everyone told me she was just lazy and overweight. The hard thing was, no one was linking the flat head to her inability to move. I felt like I was going crazy in this period. Finally, at about 11 months I took her to see an amazing paed listened to me, and as soon as he picked her up he said “she has low muscle tone” and diagnosed hypotonia and the diagnosis process started (genetics, referral for an MRI etc).

HankStrong

HankStrong

Male / 6 years & 8 months

Share the first part of HankStrong's story for readers on Sleuth! When and why did you start to feel concerned?

Hank was born in 2015. The (facebook) world was waiting as family and friends literally across the globe watched for the first picture. His birth was uneventful. Great APGARs and no problems. Our real story starts in August of 2015. Hank had failed his newborn hearing tests and his Audiology referrals had failed too. We had an ABR done and determined that Hank had total hearing loss in his left ear. She was really concerned because he had a small head and we had no family history of hearing loss.

LuckyJoJo

LuckyJoJo

Female / 1 year & 1 month

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.

TT Bear

TT Bear

Male / 3 years & 9 months

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.

B

BubbaBuddy

Male / 6 years & 6 months

Share the first part of BubbaBuddy's story for readers on Sleuth! When and why did you start to feel concerned?

No answer added.

Weasy

Weasy

Male / 9 years & 2 months

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.

Emmita

Emmita

Female / 8 years & 7 months

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.

JK9

JK9

Female / 10 years & 2 months

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.

France

France

Female / 9 years & 10 months

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.

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