My son Finley is a ball of energy. At times, he’s hard to contain. He’s opinionated and, like all 4-year-olds, has extremely selective hearing. And…
Alagille syndrome
I’m not a morning person. Truthfully, nobody in my household is. Still, our weekday morning routine frequently features at least one sleepy and grumpy individual.
ALAGILLE SYNDROME
NewsGene therapy shows promise for Alagille liver disease: Mouse study
The use of an experimental, one-time gene therapy in a mouse model of Alagille syndrome increased the number of bile ducts — tubes that…
ALAGILLE SYNDROME
ColumnsWith Alagille syndrome, sick days can be concerning
My two young boys are in full-time day care or school, so we’re no strangers to illness in our household. Between the sniffles, the coughs,…
ALAGILLE SYNDROME
ColumnsShipping medication is convenient, but it can also provoke anxiety
I’d describe myself as pretty easygoing. I’m by no means a control freak, but I’m also the type of person who likes paying bills one…
ALAGILLE SYNDROME
NewsElevated skull pressure leads to vision loss in Alagille: Case study
A young woman with Alagille syndrome (AGLS) developed profound vision loss due to increased pressure inside the skull following multiple brain bleeds, according to…
ALAGILLE SYNDROME
ColumnsManaging potty training difficulties with my son with Alagille
Potty training, in my experience, has to be one of the hardest parts of parenting a young child. For my 4-year-old son, Finley, who is…
ALAGILLE SYNDROME
ColumnsSetting my worries aside as my son tries different activities
My son Finley is a little ball of energy. He is super active and doesn’t like to rest or sleep. At 4 years old, he’s…
ALAGILLE SYNDROME
NewsNew JAG1 mutation seen as likely cause of Alagille case
Researchers have identified a new mutation in the JAG1 gene as the likely cause of Alagille syndrome in an 18-year-old man who also had persistent…
ALAGILLE SYNDROME
ColumnsLearning to give grace to our sometimes mercurial 4-year-old
Saying that 4-year-olds can have crazy attitudes is not a groundbreaking statement. It’s not unusual for my son Finley to have wild swings from happy…
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