How many doctors does it take....

mademar wrote: »

After years of struggling...We found help when she was 5 years old (~20 pounds) at the Kennedy Krieger Institute 707 North Broadway, Baltimore, Maryland 21205 Website: kennedykrieger.org

THANK YOU, Mary Ann. I'm near DC, so this is totally within the range of possibilities.

QuietBloom wrote: »

I assume they have tried appetite stimulants for you? Believe it or not, antihistamines are appetite stimulants, and on of the ones they prescribe is a very strong one. But you can try Benedryl on your own if you can tolerate it.

You'd think so, but I've asked for them by name and have been brushed off. (Same thing for high calorie supplements outside of Boost & Ensure.) After this week, I'm going to order a bottle of Apetamin if we continue to make zero progress with medical supervision. I've been smoking herb, (and my med team knows it) but I really want an alternative.

psulemon wrote: »

Which type of doctors have you seen?

Urgent care, primary care, nutrition, ob/gyn, GI and parinatal nutrition.

sueelaineparker wrote: »

Hi
I personally would also want to see a doctor who wants to look into why you suddenly lost your appetite. I don't want to worry you but certain medical conditions can cause this therefore leading to quick weight loss.

Whole heartedly agree. I'm frustrated, but continue to play the odds until I find a doctor with whom it "clicks". I'm in the USA, now pregnant, and not flying, but thank you.

usmcmp wrote: »

What sort of testing have you been through?

In Nov: blood for CBC with differential/platelet, Comprehensive Metabolic Panel showed low creatinine serum, high BUN/Creatinine ratio, low chloride serum (recommendation, drink more water). Thyroid stimulating hormone normal.

In Dec: blood for Hepatitis B & C, Transflutaminase IgA, Deaminated Glidadin IgA, IgA, H Pylori IgG, Lipase (high), HIV1/HIV2 Ab

In Jan: Upper GI endoscopy to the second portion of duodenum showed everything looks normal. Biopsies taken in stomach to rule out H. pylori, biopsies from second portion of duodenum to rule out celiac.

Jan: Right upper quadrant ultrasound, no gallstones or cholecystitis. GI says "You likely have IBS."

May: blood test for nutritional deficiencies, results due this week.

Note: I want ALL of these tests redone, plus comprehensive stool test, check for worms, parasites, fungus, yeast…, full physical, colonoscopy, complete allergy panel, and some of those they do with radioactive material and watch absorption. *some of these they won't touch with a stick now because I'm pregnant.

psulemon wrote: »

How many calories are you eating?

Please don't tell me to eat more pb.


Thanks All.

DancingMoosie wrote: »

Do you have any other physical symptoms, other than loss of appetite and weight loss?

Yes. Acid like a mother-trucker, mucus in throat and stool, food intolerances (amplified with pregnancy Constipation/diarrhea, quick to feel full (and feeling like every day I've had a Thanksgiving dinner), sharp pain in upper left and right abs at rib cage that is worse at some periods than others, and junk that comes with being underweight such as bone pain, easily bruising and weakness/fatigue.

rainbowbow wrote: »

I know you said that you don't want a list of "high calorie" foods, but, have you tried a weight gainer? Something like this?

In my opinion, since this is an issue of less appetite it seems like it may be hormonal as opposed to psychological (like an eating disorder).

Right now i don't think you're consuming enough calories to gain consistently, and frankly no matter what the problem is this is a necessity to start making some changes.

So, force yourself if you have to, but get MORE calories consistently for at least a month, and THEN if you're still not losing weight see a doctor who specializes in metabolic disorders. If you do start gaining (which i think is very likely) but you still feel like there is something wrong with your appetite, then you should still see an endocrinologist.

I haven't tried this specific formula, but have worked through many different types of protein powder, drinks and supplements at CVS, Walmart & some in GNC. I really like the caloric bang of this one, and would be willing to try it in a smaller package. Lately, whey protein comes right back up (even mixed in water). It seems like to have milk products, they need to not be lactose free per-say, but have some additional cooking or processing of something out of them. Sometimes soy and coconut also don't stay down, but it's something I keep trying because they're so damn full of calories and protein.

I'm glad you can see it's not a psychologically induced eating disorder. It's very similar in symptoms, minus the BIG fact that I DON'T WANT THIS. Being underweight isn't sexy when you shop from the girl's section.

There's no more forcing of eating I can do. I literally spend each waking hour eating and waiting to stuff more food in. That's why I'm considering tube feeding... it's just not enough. Consistency would be an AMAZING goal. I haven't figured out how to eat any number of calories consistently day to day, so I go through loops of taking in as much as the day will allow, then being forced into "rest days" by symptom aggravation. *smh*

I hadn't thought of an endocrinologist. FABULOUS idea. Thank you kindly.

EvgeniZyntx wrote: »

If you are near DC, Hopkins has an excellent gastro program.

Switching doctors is like restarting the search each time - tell your gastro that the initial search wasn't useful - what's next.

Pregnant and smoking weed? Probably not a great idea, you'll have to weigh the risks/benefits.

YES! I was thinking about them, and that also seems like completely within the range of reason. Thank you for the recommendation. I like what we did at the GI, but think we need to get further in.

As practical advice for this series of appointments, I'm definitely adding "What's next?" to my list.

I agree, smoking is not ideal, and not a decision I take lightly. It has been the most effective in treating nausea, especially retching, and very good for my appetite. However, it does have side effects, which I weigh against the effects of not eating. Honestly, I'm afraid of waiting until I am "hungry", and I'm afraid of not inducing the munchies. My weight slips so quickly! Every single day that you see above 1200 calories is attributed to the munchies, especially the 2000 cal ones. Ironically, not a single one of the 9 has asked me to stop or suggested alternatives. The side effects of Apetamine (antihistamine) seem on par, or similar to those of smoking or being underweight, and I'm definitely seeing it as a viable alternative.

Thanks for everything.

JeromeBarry1 wrote: »

When my wife lost her appetite and got to a low BMI, her psychiatrist recommended her to a Dietician. The Dietician stumbled around the little colored plate with portioned areas representing vegetables, starch, and meat, then found her mojo and said, "And put butter on your bread. And put butter on your mashed potatoes. And have ice cream for dessert. "

I might've heard that somewhere before. Please check out my food logs to see if it is working. They are public! Thanks.

3dogsrunning wrote: »

How far along are you?

2nd trimester. This batch of Dr's wanted me to wait until then to see if my appetite would (spontaneously) spring back, like many pregnant women. It hasn't.

Really appreciate how this thread is going. I have list of questions and things for their consideration, and have found a few great pieces to add because of your responses. Please keep it coming!

Hi,

Here's the latest:

At the appointments I was preparing for, the Doc's did seem appreciative that I waited, prepared, and returned. At face value, I could look like one with anorexia nervosa, but I think we're establishing a bit more rapport. I suggested an internal yeast infection (candida) as a potential cause. The ob-gyn thought it was reasonable enough and safe enough to try an oral Nystatin solution to see if things improved.

She also prescribed cyproheptadine (Apetamine), and I've tried that a couple of times. It seems helpful, but it causes me nausea before the appetite part kicks in.

The acid got worse, and I decided I wasn't going to up the Nexium again. I spent a couple of weeks weening myself from it, then from Tums, and the acid is much more under control now. I think they can be more hurtful than helpful in the long term (more than a week or so).

In the third week of June, I noticed things improving! It's hard to pin exactly which of the factors were most influential, but I have been more easily able to meet my caloric goal of 2200 with less medicinal aid. It's wonderful! I don't feel like I'm doing something wrong by eating a low calorie vegetable each day, now. However, my belly is growing rapidly and I'd really like the scale to pick up. I'm gaining ~1 lb a week, and today upped my caloric goal to 2700. I'm trying to learn how to meet these goals with less 40% of my calories from candy and dessert sources, but that's definitely a work in progress.

jmgj27 wrote: »

Have you thought about ulcerative colitis? ...a lot of the symptoms you mentioned sounded awfully familiar.

Yes. Definitely something that's still on my radar. Things seem pretty decent atm, but I am still keeping logs and paying a lot of attention so that we still might be able to learn what's triggered all of this mess and if it is something chronically degenerative. Right now, it seems difficult to diagnose even gluten and milk intolerances, and I think the med teams will be more responsive/dig deeper following the pregnancy.

Thanks All.