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Xam

Xam

Male / 4 years & 4 months

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

My pregnancy was fairly typical until my 20 week anatomy scan when they found I had placenta previa and Max had an echogenic bowel so I was referred to an maternal-fetal medicine doctor (MFM) for further testing and monitoring. The placenta previa corrected itself but the MFM doctor did a TORCH panel which did show that I had CMV antibodies so both the MFM and my OBGYN said I had already had CMV (most likely as a child) and everything was fine. Max was born in March 2018. He was 6lbs and 14oz with the sweetest little face. Max was also covered in a petechia rash on his face, shoulders, chest and back. I asked everyone from his OB to the pediatricians to the nurses about it and they all said it was from the traumatic birth, except his birth wasn’t traumatic at all- it was easy. Especially compared to his older brothers birth. Everything was fine until his one month appointment when I was told his head circumference had fallen off the growth chart. I was still told not to worry but Something inside me kept saying something wasn’t right Fast forward 4 months- we had been in and out of the pediatrician for constant feeding issues, extreme crying and tightness/rigidness in all 4 of Max’s limbs. Pediatrician continuously chalked it up to severe reflux as multiple people in our family have it as well- including Max’s big brother. We were referred to a GI who told us he didn’t think it was reflux but to keep his head circumference on our radar as it still hovered anywhere from the 1st-3rd percentile just depending.

G's Son

G's Son

Male / 7 years

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 / 4 years & 4 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 / 7 years & 2 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 & 7 months

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 / 4 years & 3 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.

EmiliaMax

EmiliaMax

Female / 13 years & 6 months

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

She was very late on everything: crawling, walking, talking. So we had her evaluated. The whole thing was horrible. The doctors questioned if I had abused her. They said she may never be able to be an independent adult. It was devastating and terrifying.

B

BubbaBuddy

Male / 7 years

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 & 8 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 / 9 years & 1 month

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.

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