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Moose

Moose

Male / 3 years & 7 months

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

Had an anaphylactic reaction to peanut powder introduction at 9 months

Mr. Moo

Mr. Moo

Male / 1 year & 8 months

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

My husband and I have two beautiful kiddos, and tried for a few years to conceive another child. After many months of failed attempts, several visits to the doctor, many tests, tracking ovulation and all of that...we believed we couldn't get pregnant, and without explanation. The first two were very quickly conceived so we were left scratching our heads. We stopped using birth control of any kind and just decided to let whatever happen... happen. Fast forward NINE YEARS, we were going out of town and I wasn't feeling quite right. I felt pregnant, and sick. I had felt this way many times before and taken many pregnancy tests only for them to come back negative. I don't know what made me take the test, but I did, and wouldn't you know - I was pregnant! Mr. Moo was a healthy baby, or at least that's what the sonographer told us. I had my 20 week scan done at the peak of the pandemic, so it wasn't routine. I couldn't see the baby at all because of the room we were in, and by some fortunate twist my husband was allowed to be there (we've read many stories of partners not being allowed in.) I just remember the scan taking forever, well over an hour. To top it off, the sonogram was really uncomfortable. The tech was pushing really hard and I didn't know why, I just wanted to know our baby was healthy and be able to leave. When it was finally over, we walked out with a "Congratulations! Everything looks great, you have a very healthy baby boy!" Two days later, we received a phone call. It was the genetics office calling because they saw "something concerning" and wanted us to have another ultrasound, at a different facility, with special doctors. They wanted to do a genetic workup, and "discuss our options." I finally asked, "Do you know what you're looking for?" "Oh, I'm sorry!" the nurse replied, "A cleft lip and possibly a cleft palate." The news felt like it stopped time. Then the questions came. Mostly, what did we do wrong? What does repair look like? Quality of life? Was their co-conditions? It was like a flood. We just had so many questions. We did the genetic workup, and we were told there was no reason they could see that if Mr. Moo did in fact have a cleft - they had no idea what caused it. It just happened, and long before I even knew I was pregnant. We then were taken back to a room with a sonogram tech, and we had a level 2 sonogram that was reviewed by a doctor, and she and the genetics team, and cleft team came into the room to confirm the diagnosis. The baby for sure had a unilateral cleft, but we wouldn't know about the palate until he was born. Mr. Moo was born with an incomplete bilateral cleft lip and palate.

Easton

Easton

Male / 4 years

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

Easton's story started before he was born. At about 28 weeks pregnant, I found myself very sick in the ICU with an infection, pneumonia, and relentless fevers. At the time I was blissfully unaware of what cytomegalovirus (CMV) was. However after weeks of testing, I was diagnosis with CMV and told that there was a chance that my child would be born with a congenital form of CMV as it could pass through the placenta. However, I was told to not worry and that it was unlikely to cause issues. This was far from true for us and so many. A few months later, Easton was born! At 36 weeks and 5lbs, he was doing well but had issues from the get go. He did test positive for CMV at birth but I was again reassured that he would be fine, and there was nothing to do for it. He was jaundice at birth and didn't as eat much as I felt he should. Every time he ate he would spill so much milk around his mouth that it soaked his shirt and mine. He sounded like he was gargling milk when he drank, almost like he was drowning. It was so concerning to me, but it was brushed off by doctors very frequently. I took him to his pediatrician, lactation consultants, chiropractors... I was desperate for help, He cried all the time, slept restlessly, and developed thrush. He was diagnosed failure to thrive at two months old weighing just 6lbs 7oz. This is when we were able to move to a larger children's hospital and start on this journey!

K Bear

K Bear

Male / 2 years & 7 months

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

When K Bear was 6 months old we took him to a Christmas party with lots of similar aged babies. They were all rolling and some were even trying to crawl. I felt alarm bells ringing but friends and family reassured me that boys take longer to develop and that K Bear was just lazy but we felt uneasy. We put the delayed development down to lack of sleep and almost zero time spend doing tummy time as he’d just scream. At his 9 month check-up, the paediatrician was concerned that he rarely rolled and still couldn’t sit unsupported. He recommended physiotherapy and reassured us K Bear would only need two or three sessions. Now looking back at photos before this check-up, K Bear was starting to sit unassisted but had slowly lost the ability in the run up to spasms starting. He’s also not smiling in most of the photos around that time which we now know are tell-tale signs of IS. A few days after this appointment K Bear made a strange movement, a little like he was losing his balance and putting his arms and legs out to steady himself. His arms and legs would fling outwards like he was falling forwards. He had an ear infection at the time so I thought it was due to that, however, I sent an email to the paediatrician describing the movement the best I could. He told me not to worry and that it sounded like a normal baby movement. A couple of weeks went by and K Bear was still doing this strange movement a few times a day. We had started referring to it as ‘jumping’ or ‘falling’. My father-in-law was very concerned when he saw it, but I told him the paediatrician said it was normal. He wasn’t convinced. We finally got footage of the spasms and sent it to the paediatrician on a Saturday, two and a half weeks after we first saw one. He replied later that day which we thought was strange as it was the weekend. He told us he’d forwarded it to a neurologist and the lump in our stomachs expanded. We were terrified.

Xam

Xam

Male / 3 years & 9 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.

MyPerfectGirl

MyPerfectGirl

Female / 3 years & 9 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).

LuckyJoJo

LuckyJoJo

Female / 1 year

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 & 8 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.

Weasy

Weasy

Male / 9 years & 1 month

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 & 6 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.

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