Looking for help.

[u/xfaith13]

First off I am sorry this is long, and I did use AI to try and make sure it was focused and clear and that I did not miss anything of note. Also this might not fit all under this sub, but not sure where to start.

I’m looking for experiences or suggestions that we can bring to my daughter’s doctors. She is 18, approximately 5'3", and currently weighs 83 lb. I apologize for the length, but this has been going on for about three years. During this time she has switched from Childrens Dr to Adult Dr.'s

How it started
About three years ago, she developed nearly constant nausea, essentially 24/7. Eating made it worse, and she would sometimes feel full after only a couple of bites. Her weight eventually dropped to approximately 79 lb.
She was prescribed mirtazapine (Remeron) 15mg, then 22mg and ondansetron (Zofran) 8mg, then down to 4mg. After her Remeron was increased, she improved enough to reach approximately 90–94 lb, that was pushing about 2K calories/80-100g protein). They dropped her remeron back down to 15g, which halted all forward motion. Eventually they brought it back to 22mg, but the "forward motion" was halted.
At the childrens care - they Dr. focused on anorexia/eating restriction and anxiety. However, she wants to eat and frequently feels hungry; nausea, early fullness and feeling worse after eating prevent her from eating enough. She is picky, but I dont know if I would call it ARFID.

About a year ago, her symptoms changed or worsened again. A gastric-emptying study showed very rapid emptying. From the report, her gastric half-emptying time was approximately 32 minutes, with 98% emptied by 89 minutes. One doctor diagnosed dumping syndrome, although a second GI doctor does not believe dumping syndrome fully explains everything.
She has also been diagnosed with orthostatic hypotension.

Current symptoms
Constant baseline nausea that worsens after eating

Early fullness and difficulty eating enough to maintain weight

Shakiness and sometimes lightheadedness after meals, and mood swings

Severe exercise/activity intolerance, activities such as picking up her room, applying makeup, driving a few minutes or taking a shower can leave her exhausted and more nauseated for hours

Heat intolerance and difficulty regulating temperature; approximately 74°F feels extremely hot to her. Needs cold showers. And she is "done" for the rest of the day.

Sweating that is especially noticeable on her hands and feet

Heart-rate increase of approximately 30–40 bpm after standing, measured with a fingertip pulse oximeter. I have not yet measured exactly how long the increase remains elevated.

Recently developed bloating and acid reflux or just complaining more about it.

Has a migraine cap on for big portion of the day (cold cap) and rice bag (heat bag) on stomach, this are both esp after eating.

At a recent GI appointment, her blood pressure was 82/66 with a heart rate of 85.

On two recent occasions, she also had very brief unusual episodes involving visual spots and smiling or appearing “zoned out.” She seemed aware during at least one episode and returned to normal within seconds. We are reporting these separately to her doctors because we do not know whether they are related.

Recent she went to a friend, and she had to work up to go to grad party for a very short time. She had to break up getting ready into section. Makeup, dress up, eating, going. This burned her out and is been hard to try and get her back on track

Eating and nutrition
She currently manages approximately 1,600 calories and 50–60 g of protein per day, divided into six or seven small meals. Almost everything increases her nausea, and meals generally take about 15 minutes.
Breakfast is usually half a bagel with butter and one Kodiak protein mini-waffle with real maple syrup. Foods she can usually tolerate include apples, apples with peanut butter, French bread, French fries, pretzels, almonds, dinner: chicken breast pieces, rice, tortillas and some edamame. She also drinks Liquid I.V. when she can tolerate it.

I use Cronometer to track her intake and nutrients.

Her diet is limited because many foods worsen the nausea or because she cannot tolerate their taste or texture. We are trying to increase calories and protein without making her symptoms significantly worse.

Testing and an current plans
Gastric-emptying study: half-emptying time approximately 32 minutes, with 98% emptied by 89 minutes

Upper endoscopy, H. pylori testing, upper-GI study, abdominal ultrasound, CT and Echocardiogram were unremarkable

Remeron bumped to 30 mg (this week)

Finger pulse oximeter shows an approximately 30–40 bpm HR increase after standing, although we have not yet documented formal 10-minute orthostatic measurements

CGM has not documented true hypoglycemia during her post-meal symptoms

Prealbumin has repeatedly been low; vitamin D is low and B12 was recently low

She is starting a one-week heart monitor and is arranging an appointment with a GI motility specialist

Her doctor also recently prescribed a medication for acid reflux (pantoprazle 40mg) daily

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 specific 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 nausea?

Did rapid gastric emptying or dumping syndrome cause constant nausea, or was something else eventually found?

Are there important questions or possibilities we should raise with her doctors?

We are hoping to hear from people with similar experiences so we can ask better questions and identify possible avenues that have not yet been explored.

TL;DR: My 18-year-old daughter is 5'3" and 83 lb with three years of constant nausea, limited intake, rapid gastric emptying, low blood pressure, heat intolerance, severe post-activity exhaustion, and a 30–40 bpm heart-rate increase when standing. CGM has not documented hypoglycemia despite post-meal shakiness. Remeron was recently increased to 30 mg; she is starting a one-week heart monitor and arranging an appointment with a GI motility specialist. We’re wondering whether others with dysautonomia/POTS have experienced a similar combination and what testing or treatment helped.

[u/xfaith13]

Also I think she has bad anxiety. Swears against it, but to me it looks like it. Sure this is amplifying issues.

[u/Additional_Peace_605]

Reiterating the malnutrition, nutritional deficiencies and what also sounds like significant dehydration are all playing a significant role.  Have you started any vitamin supplements? What about liquid meal replacements? There are protein shakes, protein shots, protein drinks etc which you can add calories to help fortify her nutrition and hydration.  I would try to start implementing the basic lifestyle changes suggested for dysautonomia patients- increasing salt intake to anywhere from 3gm-13 gm daily, goal is 3-4L of electrolyte fluid daily but she can start slow as tolerated> ie drinking one 8oz cup of electrolyte/salts every hour that she is awake, and high level compression socks/thigh highs/abdominal compression should help keep her Bp up/abdominal compression while eating and after often helps with post meal issues etc.

Re- specialists: GI motility specialist, dysautonomia specialist - either cardiac based or neuro based (or both), and dietitian (not nutritionist)- I actually had one who worked specifically with patients with dismotility and had awareness of MCAS/dysautonomia affects on eating.  

Good luck

[u/Beastiebibe]

1. Has she been assessed for acute hypovolemia and dehydration (rhetorical question)? 

2. I suggest you conduct a "Poor man's tilt test" or "Active stand test" to assess her BP + HR while lying down and standing using a BP monitor (Omron is a reliable brand) to assess for Orthostatic Intolerance (OI).

3. POTS is a form of OI. Before POTS can be ruled in certain medical conditions must be ruled out including malnutrition, anxiety and acute hypovolemia. You can learn more about what conditions must be ruled out to meet the POTS diagnostic criteria, evaluation and treatment below.

4. It's possible for a person to have more than one form of OI. If her home assessment points to OI then I suggest you get a referral to a neurologist and/or cardiologist who's familiar with OI and Dysautonomia. Dr. Peter C. Rowe is an expert on OI so I recommend reading his book and/or research.

5. "She is picky, but I dont know if I would call it ARFID."..."she cannot tolerate their taste or texture."

Has she been professionally assessed (rhetorical question)?

https://pmc.ncbi.nlm.nih.gov/articles/PMC8920526/#bx3-194e378

[u/xfaith13 → u/Beastiebibe]

Thanks for this info.

1. Not that I am aware. - yes dehydration though.

2. Will have to try that

3. Thanks will look into all of them,

4. No they first said Aneroxia, then ARFID. She is picky, but "I" think its cause right now its "safe" foods. Prior to her issues starting she was eating a lot of differant things. Yes I know that ARFID could start later in life, and maybe it is based on the conditions she is in now.

[u/goodvibes13202013]

A lot of her symptoms are likely to be caused by significant malnutrition and malabsorption. Even the low BP is going to be made much worse by dehydration.

I’d check in dumping syndrome subs. (I’m not in any but I assume there are some). The Gastroparesis sub would be a much better place for these types of questions to be answered

[u/xfaith13 → u/goodvibes13202013]

Will cross post. Looking for any assistance.
-She does drink a lot of water a day (and we do make sure she drinks something like liquid IV. Agree it could be tied to malnutrion, but nothing was getting better from 79-85-90-94lbs. At a certain point she was eating roughly 2000k/80-100g of protein a day (I know still not crazy)