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crowebirds

Does Anyone Have Problems With Early Satiety?

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My daughter, TLC, has had early satiety all her life. Even as a baby, she could not consume very much. She has gotten better now as an adolescent, but still can't consume too much. Consumption includes both food and drink. If she gets full, she will throw up. She had Pyloric Stenosis as a baby. So I don't know if this is still the same issue.

Her doctor wants her to drink between 13 and 20 cups (8oz each) of water a day. She is 12 years old, still a small body. So far, the most we can get down her is 7 cups per day.

Does anyone have experience with this and/or have any ideas how to improve her consumption without making her sick?

Thanks,

Robin

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Hi Robin -

This will probably sound strange, but I have trouble drinking plain water. I don't know why, but it seems to make me feel nauseous. When trying to increase fluids I have had more luck with G2, both in terms of tolerating it and how it makes me feel. I am worried about consuming that much artificial sweetener, but am just trying to make basic improvements and will try to iron out those details in the future.

I remember that some members have mentioned making home-made electrolyte drinks - those might be more palatable for your daughter. Good luck with all this.

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I have never, ever been able to drink much fluids, of any kind. Indeed, water does make me nauseaous, always has. But trying to drink fluids, is the hardest thing I could ever do. Since i was very little, i could only drink maybe a glass of fluid a day, im not kidding. About 2 or 3 times i month, i will get really thirsty and drink maybe 2 or 3 bottles of water in a day, but that is rare. Since my autonomic dysfunction has gotten worse over the past 2 years, i can only manage to drink a half of a bottle of water a day, im pushing it to drink a whole bottle and work on a second one.... but then i urinate three times the amount. If I force myself to drink more, i just throw up or im urinating literally every 5 mins for hours, its HORRIBLE...... What's weird is when I have a severe episode to were I am taken to the er in a rescue squad, despite only drinking less than one bottle of water a day, the er always says i am never dehydrated... how can this be? Till this day, i still can't get down much fluids at all... i try, and try very hard because I know its important.... but I just can't. (i love to eat, but over the past 2 years as i have progressed worse, i get amazingly full on just a few bites of food.... so i find myself, snacking all day... i can't eat a full meal in one sitting, ever... and fullness feeling after 2 bites is torturing as well)..... hope this helps a little.....

hilbiligrl

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I know that in a lot of cases, more so with food, that TLC has an issue with textures, temps and tastes of what she doesn't want to consume. However, her problem is more of an issue that she gets full after only a few bites, or a couple sips of liquid. Because she can consume so little, she has to eat more often during the day to keep from getting low blood sugar.

So often she will eat a meal and within just a few minutes later will complain of being hungry again. We do have to be careful with her getting too much in that she will vomit everything if she takes in too much too quickly. Does anyone have issues like something like this? Do you have any tips on improving the whole situation?

Thanks,

Robin

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Would keeping a crockpot of soup going help? My thinking is a cup of soup an hour would provide some liquid and nourishment and depending on how you prepare it could provide substantial salt.

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Robin, I highly suspect that this is related to her autonomic issues. MANY here suffer from a slowed GI tract. Some have gastroparesis- relatively easy to test (gastric emptying study- not always accurate.) Others have a slowed small bowel and/or colon- a little harder to test (small bowel manometry, etc.) All can lead to early satiety, nausea, vomiting, and an inability to eat a large quantity. My son had his antroduodenal manometry DURING his tilt table test CONFIRMING small bowel dysmotility secondary to his autonomic dysfunction. HUGE ordeal, trip to Hopkins, he barfed at the same time he fainted, unnecessarily traumatic.

After having gone through it with my son, I don't recommend all of that complicated, invasive, expensive testing for everyone with this problem as an empiric approach will work just as well. If you can find a helpful pediatric GI, who's well aware of the association between autonomic dysfunction and slowed GI motility- you can give this a shot. I would guess that a low dose of a GI prokinetic, taken 15-20 mins before meals, will do wonders for TLC's appetite. I'd recommend trying the practical approach: IF the GI prokinectic helps her eat better- she has a slowed GI tract....DONE.

Mack uses a 1/4 tsp of liquid Ery-Ped 400 (erythromycin.) It has a yummy banana flavor. Too many GI's still try to prescribe reglan. DON"T LET HER TAKE IT- BAD DRUG. Others, that are aware of erythromycin as a prokinectic, tend to prescribe doses that are too high. Less is more in this case. The idea is that the "E" slightly irritates the tum & small bowel into emptying more quickly. Even if her GI prescribes a larger dose- try a smaller one- it often works better. A last resort is a med easily available from OTC overseas called Domperidone or Motillium. It is safe, but not FDA approved for financial rather than health reasons. The patent has run out & little profit can be made from the generic version :angry: so US patients are forced to break the law by ordering drugs overseas simply to find relief and be able to eat.

In the meantime, you are doing it right- small frequent meals, low fat, low fiber, pureed vegs and fruits, no dairy, lean soft meats, WHITE everything: rice, bread, pasta. Hope you can help your sweet daughter find relief. THIS was my son's major presenting symptom so we've learned from the best pediatric GI motility specialists...the hard way :rolleyes:

Hugs-

Julie

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Just to add to what Julie wrote, domperidone is available in Canada by prescription - it might be available from Canadian online pharmacies? My neurologist actually prescribed some for me last month, apparently it also helps some people with dizziness. I haven't tried it yet.

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Thank you, Julie. Your response was just what I was looking for. I am glad you listed what to eat, it seems as though TLC has gravitated towards the "right" things. Although she does not know why, her brain is guiding her to what she needs and away from what she does not need food wise.

p.s. I tried to send you a pm a couple of days ago and it bounced back. I would really like to send you a link to my facebook with pictures of TLC's reactions especially of the acrocyanosis for comparative sake. Would you mind PMing me your private email address? Thanks and many blessings!

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Hi, @Cinereous!

I'm sorry you are not feeling well.  Following is something I posted to someone else who was experiencing GI symptoms.

The first thing I will tell you is - DON'T PANIC.  I had this (early satiety, no appetite) last year . . . in my case, this was due to gastroparesis and I'm sure any anxiety I was feeling wasn't helping.  It happened to me two distinct times last year when I was still being worked up by different specialists and not yet officially diagnosed with POTS or on any meds.  It turned around on its own both times.  Both times, I lost ten lbs. in two weeks.  I'm not overweight so it was scary but, honestly, I think it's scary no matter what someone's weight situation is.  Anyway, here's what helped me - I drank broth, Pedialyte, Gatorade, Ensure, Carnation Breakfast drinks (in a bottle, kind of like Ensure), milk, and of course water.  And my personal favorite, strawberry milk shakes when I could put more in!  I had just baby-small portions of actual food - I literally bought jars of baby food and ate what I could so I would at least have some balance in what I ate - meat, veggies, etc.  I could only take a couple of bites and I would feel full.  I also ate what soup and broth I could.  Don't ask me why, but I had a very frequent craving for chicken soup when my symptoms were intense and I wasn't yet diagnosed.  If there is *any* kind of food you really like, that is easy for you to eat, now's the time to eat that, even if you can only take a couple of bites.

The second time it happened, I went to a GI specialist . . . he said it sounded like gastroparesis and when I told him I was scheduled to be tested for POTS (TTT), he said it could very well be POTS-related, so go do the test, if it's POTS get treated, and if that didn't help or if it turned out to not be POTS, to come back and see him.  I remember he told me I should be getting 1700 calories a day and I was, like, I can barely do 500.  It hasn't happened (knock wood!!) since I've been diagnosed and placed on a low dose of a beta blocker.

Have you been diagnosed with anything yet, POTS, dysautonomia, anything? Are you taking any meds?  As I said, try not to panic because that will only make you feel worse.  I know that is easier said than done . . . I know how scary it can be when your symptoms are out of control.  I hope you will feel better soon!!

 

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I had this problem as well a year ago when I had a POTS relapse.  I had never had GI problems prior--it came up fairly suddenly.  I also found I had to eat very small amounts and avoid certain foods that seemed to irritate my system more.  Yoghurt, bananas I remember seemed easiest to eat and digest.  Along with the lack of appetite and feeling full, I had heartburn and pain in my intestines.  This went on for weeks and I lost 10 - 12 lbs.  I am also thin to begin with.   You may need to see a specialist to determine what the problem is and what treatments may help.  It may dissipate on it's own depending on the cause.  In my case it was finally determined I had low B12.  I had B12 shots and started a supplement--after two months I felt nearly back to my normal baseline.  IMO low B12 was the culprit in my case. 

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Hi CinereousIt's not uncommon to read of people having this problem on POTS forums IME. 

I too have gastroparesis (diagnosed by gastric emptying study).  It was pretty severe at one time. They wanted to put me on a feeding tube which I refused. The specialist I saw felt it was related to my dysautonomia. I was on liquids for a couple of years. Then I started getting ivig and things got better. I can eat more solid food now. I think it probably does wax and wane in most people though. It's manageable even though it's no fun. 

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Hi:)

im so glad I found this forum! Not officially diagnosed with POTS yet but I’m having lots of dysmotylity symptoms (early fullness, inability to eat normal size meal, lack of appetite).All my GI tests are coming back fine. i was diagnosed with MCAS and Zyrtec and Pepcid helped somehow. Going to do the TTT soon. 
 

what helped you for gastro and early satiety symptoms? I’m having lots of breathlessness as well. 

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@nicolet - I have GI problems from POTS, mostly severe Reflux  ( caused esophagitis in the past ), early satiety, IBS-D ( diarrhea from overactive ANS ) and inability to eat regular size meals ( due to gastroparesis, although I do not have this all of the time ). I was on a TON of GI meds to heal my GI tract from all of the inflammation, and had EGD's, Colonoscopies, Gastric emptying studies and barium swallow test - all normal except for EGD's. I used to get the breathlessness aslo, from Reflux and bloating. The diet helped.

What has helped me maintain GI wellness once everything healed is diet ( low acid, low carb, high protein ), lifestyle changes ( 6 -8 snacks a day and avoid meals, no alcohol, no raw fruit or veggies - just steamed or baked, no juices: mostly whole grains ... ) and PPI. When I get a POTS flare the GI symptoms usually flare up too and I often loose weight during that period. 

I hope you have a good GI doctor and I wish you well with your TTT - keep us posted!

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