Rest and relaxation
This is for my daughter.. Knees up to her chest seemed to help a bit.
To finally know what's wrong with me
weight gain led to remission of symptoms
Having surgery has helped me to be able to eat more easily.
Jejunostomy Surgery
My daughter is the strongest person I know even at age 15
6 months NJ feeding tube
Medical Cannabis
My Wife studied and found a natural highly absorbable vitamins and nutrition that I can use in my tubes.
My retired surgeon father who pushed for my diagnosis through a resistant and inexperienced cadre of physicians.
Eating at least 4 hours before sleeping
my operation
Constant nausea!!
Support Groups
Laying in front of blow dryer helps the pain. 16 yrs of tgis i have learned a lot of tricks
Liquid food
My mother & partner give me the strength to fight
I had a feeding tube freshman year of highschool for 1 month and that helped me gain back weight so I could eat on my own
Had DJJ surgery in 2012, minimal symptoms since
Dianosed with SMA 3/29/3027
I had a NJ feeding tube for 2 years to gain weight
When I am able to distract myself with music.
Pain medication and nausea medication has helped somewhat.
Drinking 6-8 ensure a day
Drinking 6-8 ensure a day
Getting the GJ tube helped me gain weight. Currently tube free
J tube and g tube placed for weight gain and life support. 7 months, 25# gained.
surgery to remove ligament of treitz seems to be a big help to me. 1 year post op and feeling like I can finally eat again without suffering.
Mayo Clinic Rochester
Lay down flat after a meal
I’m with a pain management doctor that manages my pain so I can eat
Beleive in your ability to fight on
Family support
Symptoms for 10yrs before diagnosis in 2019
Going to Cincinnati Children's hospital
I can't understand, the symptoms that come along with it or get on a regiment that's constant that you're always lacking something
DJJ Surgery
Learning more about my illness.
Supportive family
No health insurance to be diagnosed yet!
Nothing has helped tbh
Limiting intake of food
504 plan @ school
To know what to eat and not to eat
zofran helped with sporadic severe nausea in the meantime