Xam
Male / 4 years & 7 months
Xam’s Journey
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.
What was your experience, if any, seeking a diagnosis or treatment?
After another month of Max screaming 24/7 and constantly Fighting Max to eat and only getting 10-12 oz down him total some days I finally called our states Early Intervention program and asked for an evaluation. After Max qualified for services, we received an amazing OT who immediately typed up a report for Max’s pediatrician stating why he needed to be referred to a neurologist ASAP We referred to a neurologist in Dallas, TX and on Jan 21, 2019 we received the results from Max’s MRI which showed brain damage typical of CMV. We were then referred to an Infectious Disease Doctor at Texas Childrens We found out at 10 months old Max was still actively shedding the virus. Max passed his newborn hearing screening which was another reason Max fell through the cracks, but by 11 months old Max had lost hearing in his right ear. He has Mild/Moderate sensorineural hearing loss in his right ear today
Do you have any other thoughts or advice you would like to share from this experience?
Advice to other mothers would be to follow your gut- that “mom instinct” is there for a reason. Trust it. Push for answers for your baby. Be your child’s voice and advocate no matter how hard that may be. Today Max is 3 years old. He has spastic quadriplegic cerebral palsy, epilepsy, polymicrogyria and global developmental delay. He is the strongest, most amazing, most stubborn little boy you’ve ever met. He’s my hero.
Timeline
Below is a timeline of Xam’s observed symptoms, diagnosed conditions, and treatments and therapies.
Xam’s Notes
Signs & Symptoms
2021
petechia rash
Sign or SymptomAt birthVery Mild
Symptom
Observed at birth
Observed: Once a Day
Very Mild
Related To
feeding issues
Sign or SymptomAt 4 monthsVery Mild
Symptom
Observed at 4 months
Observed: Once a Day
Very Mild
Related To
tightness/rigidness in limbs
Sign or SymptomAt 1 monthVery Mild
Ongoing Symptom
Observed at 1 month
Observed: Once a Day
Very Mild
Diagnoses & Conditions
2021
cytomegalovirus
Condition or DiagnosisAt 10 monthsVery Confident
Condition
Diagnosed at 10 months
Very Confident
Related To
spastic quadriplegic cerebral palsy
Condition or DiagnosisAt 1 year & 10 monthsVery Confident
Condition
Diagnosed at 1 year & 10 months
Very Confident
epilepsy
Condition or DiagnosisAt 2 years & 6 monthsConfident
Condition
Diagnosed at 2 years & 6 months
Confident
polymicrogyria
Condition or DiagnosisAt 10 monthsVery Confident
Condition
Diagnosed at 10 months
Very Confident
Treatments
2021
Occupational therapy
Treatment or TherapyAt 6 monthsVery Helpful
Ongoing Treatment
Began at 6 months
Very Helpful
Speech Therpay
Treatment or TherapyAt 6 monthsVery Helpful
Ongoing Treatment
Began at 6 months
Very Helpful
Physical Therapy
Treatment or TherapyAt 9 monthsVery Helpful
Ongoing Treatment
Began at 9 months
Very Helpful
Doctors
2021
Dr. Gail Demmler
SpecialistTexas Children’sVery Positively
Specialist
Texas Children’s
Very Positively
Related To