Achalasia with these symptoms of positional vomiting?
Posted , 4 users are following.
For 1.5 years my teenaged child is struggeling with vomiting, nausea and lower abdominal cramping pain continuously, if everything worsens, there is no toilet business nr2 either anymore even if eaten just the day before.
As routine exams (appendix out, scopes normal with only mild chronic gastritis, calprotectin neg, no celiac or sugar malabsorptions) came back negative, but a gastric emptying study positive (delayed), her case was kind of 'given up' as motility meds failed and put into the reha draw. The only thing really obvious: if she lifts heavily or walks more, her abdominal pain becomes much more, so does her vomiting, for months.
All those general 'walk more' 'enjoy life' luhdiduh advices backfirering badly each time for months until moderate again and able to drag herself for few hours to school. E.g. we went after 13 months first time to beach on her birthday when she was moderate, she splashed around only to come out noticing that her belly cramping was going towards severe, her intestine as if stopped working, no nr2, no food held down, awful weeks with weight loss.
(tried all sorts of diets, trying all sorts of small meals and liquid meals nutrition and supplements to no avail)
Anyway:
A few months ago she started to have less vomiting straight after meals (half though must have gone through as we could still avoid tube feds), but always, always happening once lying down, it is forceful vomiting,
not reflux or reguritation.
No matter if stomach is empty or not. It's the full cycle of complicated vomiting with saliva (for tooth protection) building up just before forceful retching sets in, also in her sleep if finally fallen asleep just to wake her up again.
If something comes up it is clearly digested (more delayed gastric emptying indicating?) not fresh looking food, yet no other motility studies (small bowel, colonic transit) have been done to my disappointment or compression syndrome investigations of non-achalasia type (SMA, MASL, nutcracker..) and will press on for them as therapies are different, but with this age 2 adult neurogastroenterologists refused seeing her, and there are no paediatric such specialists, so reha doc came up with
simple barium swallow (not the small bowel follow through barium) to look for
achalasia, which would be only oesophagus concerning.
?
I am kind of confused as I do not find her symptoms fitting for achalasia, but rather compressions of any sort (arterial, ligaments) or functional further down.
Does anyone of you experience vomiting and increased nausea due to lying down (even half sitting not a solution, only full upright sitting preventing vomiting), no matter how long a meal was ago please, and achalasia the reason?
(her lower right sided abdominal cramping pain, that is crippling her sleep as much as the hourly vomiting, cannot be explained with it anyway)
(She is GM1-IgG positive after pleading with an immunologist to please order neuronal autoimmunantibodies - yet ganglionic AchR missing again-, GM1-IgG a neuronal autoimmuneantibody, yet again: dismissed and only offered to give cortison, not iv immunoglobulin. Going in circles, really.)
Thank you!
0 likes, 19 replies
AlanJM sanya11314
Posted
I wonder if she is allergic to certain foods?
I believe that it is possible to have motility problems lower down in the system, but the real issue is to diagnose the cause of her vomiting.
It really is a problem for a gastroenterologist to try and sort out, and you may have to search for one accordingly.
sanya11314 AlanJM
Posted
Thank you OPA_AlanM,
I have really the feeling that Achalasia is just not fitting her symptoms. Like you said too, digested food.
Allergy to certain foods I pretty cross out by now:
- blood IgE twice normal (also IgD, also protein electrophoresis)
- no eosinophily (not in blood, not in the biopsies of oesophagus, stomach, colon)
-Stool Alphy-Trypsin, stool IgA normal/negative (which are often an allergy indicator)
- food diary (no hints)
- diets for 4 weeks if possible and not worsening (FODMAP - no gluten, no milk, no egg, low histamine diet, low fiber diet, high carb diet when strongly vomiting, no grain diet ...all useless and not getting us anywhere)
only noticed: meats harder to digest and well, if vomiting is an issue, one goes onto liquid diet automatically, even if 'bad' (icypoles full of sugar, often mix glucose in drinks as she smells of keton when 'starving'-metabolism goes into fat metabolism in such situations, also normal cow's milk often the only thing, that stays down, no mash made with water does and so on)
If you can think of a specific allergy, please let me know,
but also why would allergy be picky about position?
We saw a gastroenterologist, actually 2, last year and this year and more than scopes and the normal stuff they can't think of and I know just so many other issues.
Very disappointing was the hospital gastro consultant, who we had to wait for 14 months! 'caprotectin negativ, scopes fine, appendix out, no sugar malabsorptions. What do you want? I can give you an IBS diagnosis if you are after a diagnosis'. - How rude!! My child close to tears being so brushed off. There is not one hint of IBS, no relief after nr2, not moving pain and never ver gone.
First gastrodoc was nice, but said in Feb, that he can't help us,was out of ideas.
Also I could press a privately paid MRI enterography through last year, which came back 'normal', but the prep time was far too short and with gastroparesis anyway, the sugar liquid did not distend the small bowel by then. How on earth should I take that result 'all fine and normal' seriously? Also this does not rule out any compression, but yes, the obvious to the blind eye distension or tumor would have been seen, nope, do not exist. Yet, yes, moderate faecal loading in the ascending colon.
Hm, I will go back to gastroenterologist, for nutritional drinks, that have to be prescribed and if he could refer on into the adult specialist motility world, which denied us access via GP/general physician.
Cowgirluc sanya11314
Posted
Sorry to hear about your Daughter. Have she Had a barium swallow test to check her esphogus ? I have achalasia along with some lower intestinal issues . I get real bad cramp after I eliminate that send me to the ER only to be to after a cat scan I have acute colitis. I haven't had that before. Now that I had my surgery to fix my upper spincher. I'm wondering if it has spread to my other spinchers 😕 I had several test done also. When the cramp comes on I get very sick I throw up well try to I can't now. Maybe thats what she needs just saying 😊 but I would look into IBS yes its a bad disease also that has the same symptoms . My GI doctor in Springfield Or. Said I had my IBS real bad why I couldn't eat . Didnt do anymore test. So I went to OSHU in Portland , Or . They got a great team of GI Doctors. I also have a customers that told me to go up there. I don't know where you are at but I'd check into a place that treats great GI issues . She dont want no feeding tube. I didnt get one but close . That test mymontry thing was enough to encourage me to try to eat ,so I hope she don't have to come to it. I now for .y IBS is mirlax, teas Im trying a Chinese stomach cure seems to help . Also have her try some peppermint oils. Its suppose to smother the gut ,why peppermint tea good to drink . I keep altoids around for my spazing in my esphogus. Cheers 😊
sanya11314 Cowgirluc
Posted
Thank you Cowgirluc,
I don't like an IBS diagnosis, because often people get put into this 'we don't know, but can't find anything' draw with other real issues, just not discovered.
I know people with Crohns in their small intestine ending up in IBS draw for years before discovered. Others have fructose malabsorption (we don't) and call it IBS.
Also the symptoms do not fit, except for one dismissive, very rude gastroenterologist, all docs agreed so far, that it did not fit IBS, her pain is not influenced of elimination, not worse, not better, never ever leaves her, is localised in one two finger wide spot, never moving, for now 1.5 years, her pain can be excerbated by the 'oh so good physical activity', which is odd, the more walking or dear me a cartwheel (not done for 1.5 years ever since), and she is in agony, also when she blew in her oboe reeds (long had to stop making music) she cringed in pain and rolled for 3 days badly in pain. Yet a hernia cannot be seen. It seems like an entrapped nerve, or blood supply issue, it is really strange. Not IBS like at all.
Her motility is proven slow with gastric emptying study,
yet no one tested the small intestine or colonic transit motility. ?
She has a myelin destroying autoantibody positive and wonder how much that plays a role.
We had no barium swallow for oesophagus yet, we might do it, but I fear it will reveal nothing as she had scopes and showed no narrowing or bulges.
With this negative further result we come just closer being dismissed even more.
Like they did with imaging, they do a pelvic ultrasound the 3rd time, even 2 were normal only to write 'further imaging revealed no pathologies'. Yes well, if they do imaging that can't reveal anything....
We are in Australia. It's a horrific place with referrals for everything needed, even you pay 100% out of pocket and was non-invasive.
Even seeing specialists paying them 100% privately is NOT possible without a referral.
I will push for a nutritional drink to escape the feeding tube, that is looming and not making sense. If a stomach doesn't empty, it doesn't help to put a tube into stomach, only would help if put into jejunum. There are forums full with mums with exactly that problem and docs seem not to get it. 'Try to eat', gastroparesis is a horrendous sickness, yet it does not explain as to why it happens.
Her vomiting/nausea seems gastroparesis related, a proof we have, but the one spot abdominal cramping pain is not explainable by it.
We humans plan to fly to Mars, but can't care for our human kind's 'belly' pains or environment.
Isn't it.
Oh dear, you had a lot of examinations and surgeries too!
Best of luck!
(yes, we tried acupuncture and chinese herbs for it too, after many months and 1000s dollars had to stop, it did not help)
Janeeyre sanya11314
Posted
You wrote: "She has a myelin destroying autoantibody positive and wonder how much that plays a role.?" Well, that could be indicative of an autoimmune disorder. Are you sure this isn't Crohn's? My sister got it at a young age and she threw up a lot, too, and had frequent abdominal pain. How was the Crohn's diagnosed? My sister was taken to the hospital for an emergency appendectomy. I don't recall now [this was so many years ago] if her appendix really was inflamed or if she just complained of a bad pain in that area. I know Crohn's should be in the small intestine--but that's how it was discovered--during that same surgery. We were so worried because my sister was on the table for a lot longer than she should have been for an appendectomy. That was done and some of her intestine removed, as well. The first of several such surgeries for this poor young girl, who managed to persevere and get her PhD all the while suffering from Crohn's. She is in her early 60's now, very active and doing well. Of course, they claim achalasia is an autoimmune disorder, too.
sanya11314 Janeeyre
Posted
Dear Janeeyre,
Thank you for your insight!
- Yes, I was thinking towards AAG (autoimmune autonomic Ganglionopathy) and the likes influencing the nerves, that are needed for gut motility.
but gastroenterologists dismissed testing for it and explained it was only possible in cancer patients (is so not) and symptoms not fitting, yet AAG is known to cause constipation.
Finally an immunologist (to check for Mast Cell activation since my girl gets very red facial flushing and blocked nose as well, but very rarely now, took a year to see this doc)
granted me ('that mum' you know) a test for neurologic autoimmune antibodies, which had GM1-IgG positive; ANA has always been low positive, but ANA speckled is really not telling much at all up to 1:640 (as my girl had, now around 1:80, can be considered negative).
I showed this immunologist a Mayo clinic AAG panel, which has also voltage gated and ganglionic AchR autoantibodies in it, she scribbled a few of those pannels on blood request. I don't have the result for voltage gated ca antibodies yet (but got invoice, so must have been done) and I doubt I will get the ganglionic!AchR as request/serum needed to be sent off to USA and my result, that I already requested from lab prior seeing immunologist (3 month wait), shows AchR antibodies (negative), which is a completely different antibody to ganglionic AchR...duh.
Also the immunologist told me straight up, if anything was positive in those autoimmune antibodies, they only treated it with oral cortison.
Now don't get me wrong, but everywhere I read, especially when neuronal antibodies come into play, an iv immunoglobulin therapy is warrented and granting success somtimes together with iv cortison.
My girl has already gastritis, and the one off cortison level (in afternoon) was slightly (no concern) higher than normal, oral cortison as therapy option?
We meet immunologist next week, but I don't expect much.
Yet if you know something in this field, that I should mention and be prepared with to conter, please let me know.
- No, I am not sure that it is not Crohns, but gastroenterologist is,
because she has no diarrhea,
because 'Calprotectin was negative'.
Docs take lab results by far too 100% black and white. In every study one can read that especially in non-adults the stool Calprotectin value is 2-6% false negative!
I tested her human blood in stool positive too already when testing at home and at the start of a bad bout when finally stool comes (as it tends to go into hardly motility). But when stool is sent off it comes back negative, as it is also negative at home at times, not always positive.
Yet: due to lab test stool blood negative and calprotectin negative are refused a pill camera endoscopy to check out the small intestine for laesons.
During laparoscopy from the outside the guts looked ok.
We were told Crohns mainly sat in colon or just behind the ileocecal valve and my daughter had a colonoscopy and a few inches behind that valve and nothing was seen. Yet....the whole small intestine inside is not seen.
I keep it in mind as an option. Also what therapy options (except for cutting the very sick bits out) did help your sister? Are there special medications? My girl is so sick currently, she can't attend school, she vomits, she can't sleep, she is in constant pain. She is desperate as she wanted to actually become a doctor and really put herself into school and loved it.
Janeeyre sanya11314
Posted
I asked my sister what was most helpful to her for her Crohn's Disease and she replied: " The most effective treatments are the biologics such as Remicade and Humira. I can't take Humira because I had an unusual blood reaction to it. I also have had bad reactions to most of the standard Crohn's meds. There is one steroid, Entocort (budesonide), which is useful for getting flare-ups under control with fewer side effects than prednisone, but it is not good for long term treatment." I think my sister must be in remission. She travels often and seems to have a lot of stamina. No operations for quite some time that I know of.
Janeeyre
Posted
sanya11314 Janeeyre
Posted
Oh thank you so much, Janeeyre, for asking your sister!
You really went out of your way to help. I have heard of Budesonide for eosinophilia or inflammation of inside walls of intestine system as it does not cross into blood. Makes sense.
How unlucky she reacted to Humira so badly.
(sorry if I sound like a google translator again, but I am so tired and frustrated)
I will ask doc if Remicade trial could be done, yet I think it is an expensive drug and without def diagnosis won't be given.
Yes, I am in a few fb gastroparesis groups and the likes. There are many sufferers, especially in paediatric world, but...no specialists to be found. Issues like SMA, MASL often denied, too.
It is as always, a doc doesn't get the Nobel prize or on the front page of Newspaper, if managing causatively gastrointestinal sickness like vomiting,
I really have the feeling, all they do is symptomatic relief after basic causal search didn't reveal an e.g. tumor obstruction to the blind eye.
(and that symptomatic relief often wrongly! We got offered the NG yesterday, the NG! It's not an administration or compliance issue of liquid to the stomach, it is the stomach itself, dear docs, that returns it. She was denied iv hydration, she was denied a special liquid diet to avoid running into catch22 malnutrition as she is currently so bad with vomiting and constipation as a side effect, but we should do another abdominal x-ray and have a lavage done if loading showed up. ? Just symptomatical relief. I show the GM1-IgG...nah, no one would trial an iv immunglobluin therapy as causal treatment. I am going in circles. I know she needs hydration, but please via iv or ND or NJ, not NG)
Thank you so much again Janeeyre, I will see another gastro specialist like an explorer who tries to find oil, one day, I will drill the right brain and find it, I am sure. So far just hit 'sand', unfortunately my daughter suffering hugely in the meantime.
Janeeyre sanya11314
Posted
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Did you put your message through a translator program? I suspect you did because it's difficult to follow all of your points. Am I correct in thinking that your daughter has, at some point, had projectile or sudden forcefull vomiting? In any event, this is not limited only to babies but older children and adults can suffer from it, as well. In projectile vomiting the food has already been digested but there is the possibility of an obstruction of the gastric outlet--where the stomach contents goes into the upper intestine. The obstruction [blockage] can be partial or complete. I doubt it can be complete because that would mean an emergency. This vomiting could also be brain-related, I'm sorry to say. Some disturbance to the vomit centers in the medulla [part of the brain] could possibly result in projectile vomiting--or any vomiting of unexplained origin. So here are some suggestions as a cause:
Gastric or bowel obstruction
Other causes of delayed gastric emptying
Raised intracranial [brain] pressure
Overeating
?It may be a good idea to take your daughter to a neurologist if you haven't already. Also, the lower right side is not where the stomach empties into the intestine. That seems more like a problem with the appendix. That would be an emergency. Especially if this bad pain just began lately, bring your child to a doctor right away!
AlanJM Janeeyre
Posted
Anyway, a visit to the doctor, and probably the gastroenterologist, sounds the best way forward.
Janeeyre AlanJM
Posted
What I did manage to glean was that the poster's daughter "had been given up on" and I assume by that was meant the gastroenterological practitioner[s]. Under those circumstances, I would certainly explore other avenues if it were my child, one who was having such a poor quality of life! More clarification
from the OP would be helpful.
sanya11314 AlanJM
Posted
Yes there are headaches and also migrains unfortunately, but not every day and the smaller problem. Wearing braces currently. Will distort MRI, but I have a full brain and spine MRI on 'my' list for exclusions of tumors, compressions or chiari. Why not. Nothing scares me. Dismissal scares me.
sanya11314 Janeeyre
Posted
Dear Janeeyre,
Yes, through my brain translator as I am not native English speaking. SORRY!
Another problem is, that I get interrupted 10 times when typing.
A rehab doc brought up Achalasia and I was startled, too, as you, since I don't think the symptoms fit for it.
My girl has just reclyned and is starting to vomit, I need to go (night here) for now.
Good ideas, will read and respond tomorrow.
Thanks to all!
sanya11314 Janeeyre
Posted
Dear Janeeyre,
Yes, we have seen 2 gastroenterologists.
(also physiologists, psychologist, geneticist, pain specialist, ER 4 times - useless, immunologist, adolescent team doc -who mentioned Achalasia, hence I asked if that fitted at all- and rheumatologists, acupuncturist, BUT no neurologist or endocrinologist...as I need a referral)
One colorectal surgeon (for opinion on hanging down-into-pelvis-transverse colon and loaded ascending colon. Position no problem he said, if motility worked, but if motility did not work, there was no surgical option)
The problem:
neurogastroenterologists or motility specialists do not exist in the paediatric world!
Yes, with 15 and able to actually get children herself theoretically, she is considered paediatric, refused by docs in adult world.
Our general physician referred (after my search and asking around) to a neurogastroenterologist, who has helped other motility problem people.
Yet, being bounced from this neurogastroenterologist's private rooms to public rooms' secretary, finally told after 4 weeks of waiting for appointment, that he 'wouldn't see children'. Good bye. ?
The problem I really have, is getting to see the right specialist and if something was found (like GM1-IgG, like motility issue) the right treatment.
Normal gastroenterologists are wether motility experts nor neurogastroenterologists....as I found out the hard way. And they don't refer on, because,....there is nobody in paed world. When the one medication trial (domperidone) failed, shoulders are shrugged and that was it. You can go into symptomatic relief (valve into stomach to drain fluids, valve into jejunum to feed) when much weight is lost, but that is it. No one really looks into ticking through a list of possible causes and address them. It seems not profitable, it seems unknown, no one gets into newspapers with it, hence the interest is small.
Since my daughter's case is long standing by now (we were also told, "just some post viral effect, will wear off in half a year... teenagers are sensitive, feel more pain" and all that rubbish),
there is really grounds that an adult specialist should see her and that needs to be referred by a specialist of same field. Otherwise not seen...again.
Hence I have been waiting for months to see our 'old' gastroenterologist again, -who said to us that it made no sense coming anymore as he couldn't help-, to get nutrition to bridge the time and avoid tube and to get a referral that maybe is taken more seriously and not denied due to age instantly.
The delays this causes is unbelievably frustrating. In the meantime she misses her childhood, her teenagehood, her friends, her school = her life.
The whole family suffers, emotionally, financially by this attitude.
The pain specialist wanting to withdraw the last straw (Palexia), that gives her a bit of relief and calls for 'no more investigation, start accepting and living with this condition, and it will get better. Just put her in hospital for rehab'..... I can't hear that anymore. Whenever we tried a 'normal' hour when pain was moderate and nausea managable, she was so happy, she got hit with far more symptoms and far more severe for months, did not get better (as we would wish too).
It's really hard.
What is OP please?
Janeeyre sanya11314
Posted
"OP" means "Original Poster" in the thread to which others add comments. I wish I could offer more to help your daughter. The only other thing I can think of is that she might learn to sleep sitting up as lying down seems to bring on vomiting. Has she tried it? There are people here suffering from Achalasia who have gotten accustomed to doing that because they were aspirating undigested food and drink that is retained in the esophagus due to the disorder and is too slow to reach the stomach.
sanya11314 Janeeyre
Posted
Dear Janeeyre,
Thank you so much! OP...new vocab learnt. ;-)
First thing we did put the bed head up to 45degree angle as her slat is designed to do that, she still vomits forcefully with this half sitting position.
The full sitting position causes quite some pain in back and she can't really sleep. She has tried for a month and backpain got really bad, also in 45degree half sitting.
Since vomiting is the same in 45degree angle, she decided she can be on a 20degree angle, which feels more restful (lying down) and causes not more vomiting than 45 degrees. In full sitting, I would really need instructions or how to prevent the discs from playing up. We built a corner with pillows for sitting fully to sleep, yet still goes into bad back position.
Really tricky.