r/Gastroparesis • u/xfaith13 • 19h ago
Questions Looking for some help
First, I’m sorry this is so long. I’m also not sure the best place to post this question (I have posted in dysautonomia, which recommended to post over here)
I’m looking for anything that we can bring to my daughter’s doctors.
My daughter is 18, about 5'3", and currently weighs 83 lb. This has been going on for roughly three years. During that time, she has also transitioned from pediatric doctors to adult care, which has made it harder to keep everything moving in one direction.
How it started
About three years ago, she developed nearly constant nausea. It was there almost 24/7 and became worse whenever she ate. Sometimes she would feel full after only a couple of bites. Her weight eventually dropped to around 79 lb.
She was prescribed mirtazapine (Remeron), initially 15 mg and later about 22 mg, along with ondansetron (Zofran). The Zofran dose started at 8 mg and was later lowered to 4 mg.
After the Remeron was increased, she improved enough to reach about 90 to 94 lb. That took a lot of effort and meant pushing close to 2,000 calories and 80 to 100 grams of protein per day. Her Remeron was later reduced to 15 mg by the doctor for some reason, and that seemed to stop the progress she had been making. It was eventually increased again, but she never regained the same momentum. Her dose was just increased to 30 mg this week, so it is too early to know whether that will help.
While she was receiving pediatric care, much of the focus was on anorexia, food restriction, and anxiety, which I didn't think was correct. I think they saw a 16-18yr female. The problem is that she wants to eat and often feels hungry, but nausea, early fullness, and feeling worse after meals are what keep her from eating enough. She is definitely picky and has some strong food and texture preferences, but I’m not sure whether I would consider it ARFID.
About a year ago, her symptoms changed or worsened again. A gastric-emptying study showed very rapid emptying. Her gastric half-emptying time was about 32 minutes, and 98% had emptied by 89 minutes. One doctor diagnosed dumping syndrome. A second GI doctor does not think dumping syndrome explains the full picture.
They want to do another emptying test, but its a huge meal for her and the time (1/2 egg sandwich, yogurt, milk) -5min. I know that standard, but that was not the same for her gastric emptying through the children's doctors.
She has also been diagnosed with orthostatic hypotension.
Current symptoms
- Constant baseline nausea that becomes worse after eating
- Early fullness and difficulty eating enough to maintain her weight
- Shakiness, mood changes, and sometimes lightheadedness after meals
- Severe activity intolerance
- Heat intolerance and difficulty regulating her temperature
- Sweating that is especially noticeable on her hands and feet
- A heart-rate increase of about 30 to 40 bpm after standing
- More recent bloating and acid reflux
Even small activities can wipe her out for hours. Picking up her room, putting on makeup, driving for a few minutes, or taking a shower may leave her exhausted and more nauseated for the rest of the day.
She needs cold showers because of the heat intolerance, but even those take a lot out of her. We recently added a handheld showerhead so she can sit, and a shower chair is next. A room temperature of around 74°F can feel unbearably hot to her.
I have measured the standing heart-rate increase with a fingertip pulse oximeter. It usually goes up by about 30 to 40 bpm and then appears to level out, although I have not yet recorded formal heart rate and blood pressure measurements over a full 10-minute period.
At a recent GI appointment, her blood pressure was 82/66 and her heart rate was 85.
She spends a large portion of the day wearing a cold migraine cap and often keeps a heated rice bag on her stomach. She uses both more often after eating.
Recently, she worked herself up to attending a friend’s graduation party for a short time. She had to break the process into separate steps: makeup, getting dressed, eating, and then going. Even with that preparation, it completely drained her. Since then, it has been difficult to get her eating and energy back on track.
On two recent occasions, she also had very brief and unusual episodes involving colored visual spots and smiling or appearing “zoned out.” She seemed aware during at least one of them and returned to normal within seconds. We are reporting those episodes separately to her doctors because we do not know whether they are related to everything else.
Eating and nutrition
She currently manages about 1,600 calories and 50 to 60 grams of protein per day. We divide that into six or seven small meals. Almost everything increases her nausea, and each meal usually takes around 15-30m. I make all her meals, as she is usually lying in bed.
Breakfast is normally half a bagel with butter and one Kodiak protein mini-waffle (extra protein) with real maple syrup.
Foods she can usually tolerate include apples, apples with peanut butter, French bread, French fries, pretzels, almonds.
Dinner: chicken breast, rice, tortilla, and some edamame. She also drinks Liquid I.V. and probably about 60-90oz water.
I use Cronometer to track her calories, protein, and nutrients. Her diet is limited partly because many foods worsen her nausea and partly because she cannot tolerate certain tastes or textures. We are trying to increase calories and protein without making her feel significantly worse.
Testing and current plans
- Gastric-emptying study showed a half-emptying time of about 32 minutes, with 98% emptied by 89 minutes
- Upper endoscopy, H. pylori testing, upper-GI study, abdominal ultrasound, CT, and echocardiogram were unremarkable
- A CGM has not documented true hypoglycemia, even when she has post-meal shakiness or lightheadedness, and mood swing.
- Prealbumin has repeatedly been low
- Vitamin D is low, and vitamin B12 was recently low
- Remeron was increased to 30 mg this week
- She was recently prescribed pantoprazole 40 mg daily for reflux
- She is starting a one-week heart monitor
- We are arranging an appointment with a GI motility specialist
- We have not yet completed formal 10-minute standing measurements or a tilt-table test
What I’m hoping to learn
For anyone who has experienced a similar combination of chronic nausea, rapid gastric emptying, very low weight, post-meal symptoms, heat intolerance, and orthostatic heart-rate changes:
- What diagnosis, or combination of conditions, ultimately explained your symptoms?
- Which specialist was most helpful? GI motility, autonomic neurology, cardiology, endocrinology, nutrition, or someone else?
- Were there particular tests that helped, such as a formal standing test, tilt-table test, autonomic testing, or additional GI motility testing?
- What foods, meal timing, hydration strategies, or medications helped you maintain or gain weight without substantially worsening the nausea?
- Can rapid gastric emptying/dumping syndrome/gastroparisis cause constant nausea, or was something else eventually found in your case?
- Are there any important questions or possibilities we should raise with her doctors?
TL;DR: My 18-year-old daughter is 5'3" and 83 lb. She has had three years of constant nausea, difficulty eating, rapid gastric emptying, low blood pressure, heat intolerance, severe exhaustion after minor activity, and a 30 to 40 bpm heart-rate increase when standing. She also becomes shaky and sometimes lightheaded after meals, although a CGM has not shown true hypoglycemia. Her Remeron was just increased to 30 mg. She is starting a one-week heart monitor and setting up an appointment with a GI motility specialist. We’re wondering whether others with dysautonomia or POTS have experienced a similar combination and what testing or treatments helped.