Undiagnosed-looking for suggestions

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

Chrys2564

Chrys2564

Joined
Jan 1, 2016
Messages
18
(Sorry, I was going to post this in the Undiagnosed kids group, but I can't find a new thread button)

Hi---just wanted to quickly introduce myself. My name is Chrys, my daughter's name is Anne (17). We are just starting down the path to a dx (of anything, really), and I'm looking for any information I can get that will help. My daughter has had constant mouth ulcers for about two years now, as well as morning nausea, diarrhea, and constipation. She has started her professional dancing career this fall, which is both physically and mentally demanding but she loves it. About two months ago, she started feeling nauseous all the time, to the point of almost throwing up every time she had to move. We went to her GP, who did blood work and found Vit. D and B12 deficiency, and referred her to a GI specialist. She began to have severe stomach and upper left side abdominal pain and a very loud gurgling stomach (seriously, it sounds like two dogs fighting sometimes) about 30 minutes after she ate. Between the pain and the diarrhea, she lost 20 lbs. in six weeks (she was super-tiny to begin with, and it got down to scary-tiny). Everything continued to get worse (and it was already really bad) in Dec. She has never before experienced stage fright, but she almost didn't make it through her Nutcracker performance due to the nausea, diarrhea, dehydration, and shakes. She was also passing whatever little food she ate almost completely whole. She was physically and mentally exhausted, and this all continued through the fourth week of December. We met with the GI nurse practitioner two days before Christmas, and she said she suspected IBD. She ordered a colonoscopy and endoscopy last week, which came back normal. My daughter is starting to feel better after two weeks of rest, although she still feels nauseated all of the time and has on-and-off stomach pains. The next step is a capsule endoscopy. I'm wondering if we should wait until she has symptoms again (hopefully, it was just a fluke and it won't happen again) before doing the test? We are also meeting with her dentist next week about the mouth sores, and have a follow-up with the GI. My mother has had IBS with diverticulitis for years, and I just found out that my husband's father was diagnosed with UC at 20. My son was dx'ed with IBS two years ago, which he manages with diet and lots of Immodium. Any information would be very helpful at this point!
 
Hi Chrys, and welcome to the forum. My son is 11 and was dx'd at age 8. Watching your daughter suffer and not knowing what is wrong is heartbreaking, I'm sure. Personally, I would not hold off on any tests. I would go ahead and get all the testing done that you can, even if her symptoms are subsiding. If it is Crohn's, the disease can still be progressing even if she feels better. The stress of her Christmas performances may have been exacerbating her symptoms. I would keep a diary of all her symptoms, of what she eats and what seems to bother her. Smaller, but more frequent meals, and a diet low in fiber may also give her some relief, but I would not eliminate anything from her diet until tests have been completed. The pharmacist can also whip up some "magic mouthwash" that may help with the mouth ulcers. i hope you are able to get to the bottom of this soon, and get your daughter on a path to wellness.
 
I'm a "dance mom" too! Isn't it the best? My daughter is almost 11 and adores ballet.

I would do whatever tests the GI recommends, regardless of current symptoms. It sounds like she was pretty sick, and from our experience symptoms can return in the blink of an eye. Hopefully you have answers and a plan very soon.
 
Did they look at Gastroparesis as well???
Lots of nausea
Food coming out whole since the stomach doesn't grind things properly
Good luck
Have they suggested an MRE ?
 
CrohnsKidMom---thanks for the advice, I didn't even think about keeping a food/symptom diary, that might be really helpful! She can still only eat small, bland foods at the moment, and she's drinking Ensure whenever she feels up to it (hates the flavors), but she desperately needs to put on weight so she can continue to dance. There is a dancer in my daughter's company who has been dealing with Crohn's since she was 10, and she also said that she gets a flare before almost every performance, just from the stress.

DanceMom---thanks for the advice, I'm more inclined to do the test now rather than later. I guess my fear is that they won't find anything (not like I want it to be anything), and she'll just keep getting sick. I've heard that it's common for it to take years to figure out what's wrong and treat it. Dance is everything to her, and she's worked her whole life to get to where she is---she's very worried that they won't use her because they're worried that she might get sick again (personally, I have always felt that she needed to go out and explore other things a long time ago, but I support whatever her decision is right now). I hope they can find answers, or at least rule out some things!
 
my_little_penguin---as far as I know, they haven't ruled out anything, but I will ask about gastroparesis. That's interesting, about the food. No MRE. I think the next step they mentioned was an OB/GYN and an allergist. The GI who did the scopes suggested it might be anxiety, but she's pretty much doing the same thing she's been doing for the last 10 years and says she's not bothered by anything but the stomach stuff. The mouth ulcers are constant, which is a little weird, I think. She's going on two years with huge, nasty ulcers all the time. That's something other than nerves, especially since they tested negative for herpes virus. But I know other things can cause it.
 
One other thing bechets
Mimics crohns and is notorious for severe mouth ulcers
Takes a long time to get a dx
Rheumo handles bechets
 
A capsule endoscopy or MRE is a good idea. There are some parents on here whose kids only have Crohn's in the small bowel -- past where scopes can see.

A gastric emptying test is usually used to diagnosed Gastroparesis - it's quite a simple test. You eat an egg and toast (usually) which has a small amount of radioactive material in it. They then take picture at different intervals to figure out how long it takes the stomach to empty. If more than 10% of the meal is left after 4 hours, Gastroparesis is diagnosed.

Symptoms are usually nausea, stomach pain, fullness and abdominal discomfort after eating, even a small amount and vomiting. Weight loss is also common.

While you're waiting for her to be diagnosed, a heating pad can help with stomach pain. You can also get Thermacare wraps that she can wear at the drug store. They're meant for back pain but she could wear them backwards.

Hang in there!
 
my_little_penguin---I will ask about Bechets, the mouth ulcers are really painful. She sometimes says it's hard to breathe because the air going in hurts!

Maya142---thanks for the info! I had heard about small intestine involvement, so I'm inclined to do the tests anyway. Better to rule it out. I'll try the heating wraps for her (I love them for my back). Gastroparesis is definitely something to look into, sounds like many of her symptoms.
 
Chrys,
Did they do biopsies when they did her scopes? I thought all doctors always did them but recently heard of several cases where they were not done. Sometimes crohns can be microscopic and only seen on biopsy.
 
I second the fecal calprotectin. I'm also wondering about an MRE to look for obstructions/abscesses. Has she always been excessively flexible?
 
Catherine--okay, this is the weird thing...don't you think a stool sample would be one of the first things they would test? No stool sample testing. I even asked about it,but they said nope, they weren't interested. They are treating the low D, but for some reason wanted to wait until after the holidays to begin treating the B12. I have no idea why. Crazy.

Kimmidwife---they did do biopsies. We are supposed to get the results at her appointment on the 11th. The GI guy who did the scopes said it was "kinda boring", and expected the biopsies to come back normal. I guess because most of his patients are older, my daughter seemed uneventful. But maybe that's a good thing, right? Although my daughter and I both had the feeling that he was blowing us off.

CarolinAlaska--I have to talk to the GI nurse practitioner, but my understanding is that the only other test they are going to run is a capsule endoscopy. I have no problem asking for more tests (my oldest son is autistic, so I'm used to being, uh, very proactive when it comes to doctors), and our insurance is pretty good (retired military), so I am planning on talking to her about continuing to look for anything that might be contributing to her issues. See, this is why I'm so glad that there is a place like this to ask questions from people who have actually lived this---I've never even heard of a fecal calprotectin. And yes, she's always been very flexible.
 
Are you seeing a pediatric GI or an adult GI? IBD in kids and teenagers is actually more aggressive than in adults, so even though she is 17 (and I'm sure she thinks she's an adult!) seeing a pediatric GI might help. If you do want to see a pediatric GI, it is important to do it before she turns 18 - most pediatric doctors will see patients till 21 (some till 24) but won't take on new patients if they're over 18.

We have also found that pediatric doctors are more proactive and aggressive when it comes to treatment.

Fecal Calprotectin is a good idea. Stool tests are typically done to rule out infections but I suppose since she's already had scopes it has been ruled out? I'm not quite sure but someone will weigh in soon I'm sure.

There are several parents on here whose kids' scopes looked clean, but biopsies showed chronic inflammation and they were diagnosed with Crohn's.
 
Yep when Ds was dx Gi came out of the scope and told us how good things liked and that it was probably something else
Biopsy should granulomas in multiple locations plus acute and chronic inflammation throughout the Gi tract

So crohns was dx
 
We are seeing an adult GI---I wondered about that. The insurance tells us where to go, so we have no input on who we see. I'll have to ask the GP about getting that changed. The GI guy who did the scopes was very irritated about the fact that she was 17. Everyone else in outpatient surgery was at least 50.
 
You'd have to check if your insurance would allow you to go, but Boston Children's has one of the best IBD programs and GI departments in the country.
 
my_little_penguin---hopefully, they'll be able to tell us more when we get the results back from the biopsies. You hear so many stories about people going in and getting negative test results over and over, and then finding out they have something. My daughter was in tears on the way home from the procedure because they didn't see anything, she's worried that they think she making it up.
 
Maya142---I think they would let us, I'm just not sure if we need to be referred by the GI or the GP. This is a very small GI practice, at the smallest hospital in the city. Not that small practices are all bad, but they're just not always...up on the latest research. It is Maine, after all. But we're close enough to Boston, so I'll ask about that also. Thanks for the info!
 
The GP can usually refer you. You could also look for a bigger hospital in Maine, but considering you're so close to the best pediatric GI dept. I'd go there!

Good luck!
 
Chrys, so sorry she (and you) are going through all of this.

Three things have aheady been mentioned but I'll reinforce.

My son had one set of scopes that looked great to eye but showed microscopic inflammation in duedeum and ti. He has also had scopes that looked clean and biopsies confirmed it. I hope the later for you.

He has been seen at Boston children's. Loved it. I think they thrive on unusual cAses. They do offer a remote second opinion if you can't travel for some reason.

We called in some favors and he also saw a well known adult specialist at aged 15 (he was undiagnosed, we were desperate and I found an inner ninja you sound like you have to get him seen). For all the papers he has written and trials he is doing, he acted almost as if we were a bother bc he admitted he really didn't know how the disease progresses in youth or how they respond to treatment. It was a total bust. I'll fight to stay with a ped gi as long as we can.

I hope to hear some good news about your daughter soon.
 
Maya142---there aren't really any big hospitals here (some are downright laughable, very much like going to Walgreens for ER care), but we could do Boston for sure.

Optimistic---The adult GI was very much like that, he was very confused as to why she was there. He is probably used to seeing older adult patients for routine colonoscopies. Very good to know, about the pediatric specialists. I had no idea---I was actually thinking that an adult GI would be better, for some reason. I guess they sent us to an adult GI because she sees a family practitioner and not a pediatrician. My two sons (20 and 21) see a pediatrician, so they get pediatric referrals.
 
Chrys2564 said:
CarolinAlaska--I have to talk to the GI nurse practitioner, but my understanding is that the only other test they are going to run is a capsule endoscopy. I have no problem asking for more tests (my oldest son is autistic, so I'm used to being, uh, very proactive when it comes to doctors), and our insurance is pretty good (retired military), so I am planning on talking to her about continuing to look for anything that might be contributing to her issues. See, this is why I'm so glad that there is a place like this to ask questions from people who have actually lived this---I've never even heard of a fecal calprotectin. And yes, she's always been very flexible.
Click to expand...

Whatever you do, don't let them do an abdominal CT scan. The MRE gives much less radiation. Adult practitioners and small hospitals don't seem to know it is an option.

Fecal calprotectin tests for inflammation in the GI tract. It seemed to help us follow her better when the blood work and biopsies didn't show it.

The reason I asked about the flexibility is that my daughter was recently told she has hypermobility syndrome, which can be related to a form of Ehlers-Danlos syndrome - a connective tissue disorder. It can cause IBD, IBS, mouth sores, and many other health problems such as joint problems, vascular problems, scoliosis, osteoporosis, early osteoarthritis, seizures, asthma-like symptoms... For my daughter, this seems to be the key to a whole myriad of health issues. Unfortunately, my daughter's biopsies never show much, and no one has recognized this syndrome until she saw the rheumatologist. Although I think we've found the culprit, it isn't well understood. I don't know if this information will help the doctors understand how to best treat her GI symptoms... You may want to look it up.
 
Why are they not treating the B12 deficiency? B12 deficiency is a leading cause of mouth ulcers. I would investigate that a little further.

Second Mehita's questioning re: Celiac. Did they take biopsies during upper endoscope for Celiac?

The FC test shows inflammation specific to the GI tract and is often used to determine whether or not scopes are necessary. Since you were doing the scopes it makes sense that they skipped the FC test...although...FC test at the same time as scope are useful if a dx of IBD is reached because then you can use the test to track response to treatment and as an early indication of a flare.

The capsule endoscopy is a great idea as disease could be hiding in the small bowel. different docs prefer different tests...if your doc uses the capsule then they wouldn't likely feel the need for the MRE.

In addition to pursuing a pediatric GI I would also pursue an adult GI who specializes in IBD. The GI field is very varied and all docs can not be specialist in every condition. Therefore, an adult GI who specializes in IBD might be a better option than a general GI...even if it isn't IBD a doc with that specialty would be well versed on the differential diagnosis.

Good luck! I have a runner. It is hard when their bodies won't cooperate with them and do what they are willing them to do.
 
CarolinAlaska---thanks for the info on the MRE! Believe it or not, I've heard of hypermobility syndrome, there was a family in one of our family-of-special-needs-kids support groups. I had no idea the symptoms could be so severe, though. Hope your daughter is getting all the help and support she needs (and you too)!

Mehita---the only lab work so far has been a regular blood work-up with a Vit D screen thrown in. I had to ask for the B12 test. She was given the celiacs blood test last summer that came back negative. I am starting to understand that I need to do some extensive research on my own on lab and imaging testing---I've so far been going along with what the GP and GI person is telling me. Luckily, I have a great GP who really listens to me and is willing to do the testing that I feel is necessary. That's why I'm so glad I found this forum and you all!

crohnsinct---I'm not sure why they're waiting on the B12 treatments, really...I have an appointment set up with her dentist (I'm trying to get as many medical opinions as I can, and she needs something stronger than the over-the-counter mouth rinse), so I'll make sure she knows that we are just starting to treat it next week. They did do biopsies for Celiac in the endoscopy, we won't know results until next week. I didn't even know that different GI's specialized in IBD. Wow. So much I need to learn! You're right, it's so hard to watch them struggle to do the things that they love to do when their bodies are refusing to cooperate. My daughter just had to turn down a paying gig today because she feels so worn out...ugh.
 
Sorry late to this thread.
You've gotten great advice from everyone.
My girl is a lot younger, dx at 3 but is now almost 7 ( where does the time go).
You seem like your doing a great job at being her advocate
and she'll be happy you were... someday.;)
 
Hi, just wanted to follow up on this thread...my daughter has now had a CT scan, capsule endoscopy, ultrasound, blood work, and fat malabsorption test. All negative. She has continued to lose weight, and looks like a stick. She has developed perianal fissures, and has constant pain and swelling in one particular spot on her left abdomin. She also still has almost constant nausea and diarrhea. She was evaluated by an oral pathologist for her recurring mouth sores, and he immediately asked if she had ever been diagnosed with an autoimmune disorder. When we explained what was going on, he says that the reason he asked was because he's seen ulcers like hers in Crohns patients. He asked if she had ever been tested while she was having active symptoms---does anyone know if that would make a difference? Last night was a bad one---severe pain, vomiting and diarrhea all night. This is so incredibly frustrating...I'm sure most of you know what I'm talking about, everything always coming back normal. She is on the FODMAP diet, which doesn't seem to be helping. Ugh.
 
Did they biopsy the oral lesions ?
Have they looked at bechets ( mimic crohns and lots of lesions )
Are they using supplemental formula to at least help
With weight loss even if they can't fix it ???

It is so hard when they are suffering and the tests are "normal "
So you don't have a thing to treat per say

More hugs
Just keep pushing
 
I agree - supplemental formula should help. You can try Ensure and Boost first - those are most palatable and come in lots of flavors. If she cannot tolerate those, there are more broken down formulas like Pediasure Peptide and Peptamen Jr.

I wish had more advice...have you been able to see another GI? Sometimes just a fresh set of eyes can help. Were you able to get to Boston Children's?
 
I second Maya,
It really sounds like she needs a fresh set of eyes looking into her. Like MLP said Bechets is something to look into.
I am so sorry to hear she is going through this.
 
Did they ever treat the b12 deficiency? How is her vit d level? I am extremely deficient in both and it makes me feel like total rubbish. As a dancer (I sm an ex dancer), at a minimum, she really needs to treat those deficiencies to have the energy she needs.

Did they do motility testing yet?
 
my little penguin - he didn't biopsy the ulcers this time, because it was just a consult visit, so we have to make another appointment for that. We haven't found a supplemental formula for the weight loss that she can keep down---if she loses 2 more pounds, they're going to do IV supplementation. She's trying to gag down as much food as she can, but she keeps getting sick. The GI and the PCP keep bringing up Bechets, but neither of them knows enough about it to diagnose it. I think they're both hoping the immunologist can do it.

Maya142 - we haven't been able to see another GI, because her PCP thinks the tests results are conclusive. The insurance people I've talked to say they have to have a referral from the PCP. I'm hoping the immunologist can find something maybe the GI has missed.

crohnsinct - they did end up treating both the B12 and D issues, although they say that may be an ongoing thing. They did not test for motility, maybe because they got enough information from the capsule. The capsule did basically shoot through her in record time, so I think they're not worried about any motility issues. I'm just guessing about that, though. The artistic director of her dance company basically told her to gain some weight or they wouldn't renew her contract, but she's been so sick this year, she's given up on a dance career.

DanceMom - no immune testing has been done yet, to the best of my knowledge. Her one inflammation test came back within normal range, but I haven't gotten the actual test results mailed to me so I don't know what they actually are. The immunologist will go over all of that with me, I guess.

kimmidwife - yeah, it sucks. I hate seeing her having to give up things she really loves to do because she feels so completely drained and hopeless. The last time we saw the GI and the latest test was normal, she burst into tears. The GI feels horrible.

Thanks for all the help and support, everybody...I think you guys are the only ones who understand this. Some people have even suggested that this may be "all in her head", which makes me want to scream.
 
I'd guess she's pretty malnourished if they're considered IV nutrition (TPN).

Have you tried more "broken down" formulas - semi elemental like Peptamen Jr and Pediasure Peptide or elemental, like , EO28, Neocate and Elecare?

Those are easier to tolerate.

My daughter could not tolerate semi-elemental formulas (caused diarrhea) and so we had to move to elemental (Neocate). She couldn't drink enough - elemental formulas are less palatable - so she ended up with a feeding tube.

With an NG tube, kids can insert it every night and remove it in the morning, before school. You run the feeds overnight, while the kiddo sleeps. They're hooked up to a pump. That way, no one has to know. There are good videos on Youtube of kids inserting them and removing them.

It sounds much more intimidating than it is. I was shocked at how good my daughter got at inserting the tube every night and how fast she got good at it (in a week or so).

I just wanted to mention a feeding tube as an option because in terms of infections, they are lower risk than TPN. And in our experience, they are used more by pediatric GI's and it seems like you're seeing an adult GI and I figure they may not have presented it as an option.

Kids can also choose to keep the tube in all day - little kids do this often and some older teens prefer it to inserting the tube every night.

If vomiting is a problem, then they might use a tube that bypasses the stomach - like an nasojejeunal tube (NJ tube). That goes from the nose to small bowel and because it is placed by a radiologist, it stays in (can't be inserted by the kid). My daughter has also had one of these.

She has had lot of trouble with weight loss. We tried everything to get her to gain weight, but she just could not eat enough to even maintain her weight because of stomach pain and nausea (she was eventually diagnosed with gastroparesis in addition to Crohn's).

She was hospitalized 3 times for being very malnourished. She really resisted the idea of a feeding tube but finally gave in when she was down to 82 lbs or so and her GI told her that her weight loss was going to impact her organs.

She now has a more permanent feeding tube and has gained all the weight she lost and then some. She feels a million times better now she is getting good nutrition and isn't just surviving on 500-600 calories a day. She is now very grateful for the tube.

Good luck - I'd recommend seeing a rheumatologist too.
 
I totally sympathise. I watch my daughter struggle with tiredness, headaches and daily stomach pain and every test comes back okay. They look all happy as they tell you the last test was normal but that doesn't help at all. We are trying gluten free with no change yet. I hope someone gets you some answers soon!
 
Thanks, Sascot---I feel like such a jerk when the doctor tells us that everything came back normal and I look disappointed. My daughter has been on the FODMAP diet for a couple of weeks...we've seen a little improvement, which is good, but there is still the abdominal pain, diarrhea, nausea, and fatigue. I'm sure the fatigue is in large part related to not getting enough food. At least she can finally sleep through the night. I hope you get some answers, too.

my_little_penguin---apparently, the doctors we're currently working with have no idea who to send us to next. Thanks for letting me know. I put in a call yesterday to see if we can get a referral, but I haven't heard anything yet.

Maya142---I think the IV nutrition was used more as a "if things get really bad and you're not trying" kind of threat. And she tries to explain that she gets really sick when she eats, so she eats little snacks throughout the day, but I get the feeling that they think she's exaggerating. Because the tests are all normal. So she must not be that sick to them, I guess. So, so glad your daughter is doing better---I will mention the feeding tube if things start to look like they're seriously considering supplementation
 
What are her symptoms after eating?

I know you said her pillcam went through her in record time, but maybe she could still have a motility issue? My daughter had severe nausea and belly pain after eating. She also lost a lot of weight. We kept blaming it on gastritis, and so she lived with her symptoms for two years or so and just kept losing more and more weight.

Once we finally got around to doing a gastric emptying test, we realized she had significantly delayed gastric emptying and that was causing her problems.

Her pillcam was weird too - sat in her stomach for 3-4 hours and then went through her small bowel very quickly. A pillcam is not really used to diagnose Gastroparesis - you really need a gastric emptying test. It's a pretty easy test and non-invasive.

However, the Gastroparesis would not cause mouth ulcers or diarrhea, so it may be that she has two (or more!) things going on.

Sending HUGS - I hope the immunologist has some ideas for you.
 
She feels extremely nauseated about 15min after eating, and then severe stomach pain (starts out crampy and then becomes sharp) and left mid-abdominal pain and swelling. Most of the time, she has diarrhea (up to 7 times a day and more throughout the night). The most incredible stomach noises I've ever heard. Her pillcam report is actually kind of funny---they specifically mention the fact that the cam went through her stomach in 1 min (they say it normally takes an hour), and through her small bowel in 1 hour and 25 min. (usually 3 hours). We imagine the guy reading the footage calling everyone in to his office and saying, "Watch this!". The fact that everything moves so fast could explain her weight loss and mouth ulcers (from malnutrition), but the blood work comes back normal and the one stool sample they took came back normal as well (or at least I'm guessing it's normal because nobody called to tell me it was not normal). All they've ever checked was Vit. B12 and D. Isn't it sad, that our kids have to live with this stuff for years before anyone figures it out? I'm glad they figured out your daughter's issue, that must have been something of a relief!
 
ERGH! Ex dancer here again and I will tell you that for years I was suspected of an eating disorder because I was so thin. Of course I still am and my mother, father and brother all were and dancing 8 hours a day makes it difficult to gain an ounce! As dancers that is the first thing docs minds go to...makes me so mad.

But I digress...

I am also thinking maybe the quick motility is a problem. Either way it seems to me that someone needs to do a study on her to see if that is the reason.

Malnutrition will leave her with many vitamin and mineral deficiencies and that can absolutely explain the mouth ulcers. However, I am willing to bet she is also dehydrated and I have learned from my runner daughter that dehydration can lead to nausea and believe it or not diarrhea...so a what came first situation.

Your daughter is so lucky to have you supporting her. Please keep it up. She needs to know that someone is in her corner and fighting to get answers.

She may need to take a break from dance for a while. She needs to concentrate on her health and I don't think she is going to help herself by pushing her body the way she is right now. I know how hard it is. I had to do the same when I was her age (injury/surgery). Turned out I couldn't return to dance and ended up going to college. I just picked any old college and guess what...I had the time of my life. Ended up being student government president, on dance team (just because you can't dance professionally doesn't mean the end of dance) and ended up in a great career. But a break doesn't have to mean the end of dance..she just has to get better nd take care of her body!

:ghug:
 
We had a similar experience with the pill cam and broke the hospital record. She passed it in 3 hours and 15 minutes. And guess what? Her labs looked pretty good for years. Then things started to change and we started to get partial explanations. I'd tell you to be patient but I already know that's too difficult when you're watching your baby suffer.
 
crohnsinct---yeah, that's the first thing they asked me, whether I suspected an eating disorder...uh, no. The kid wants to eat. She just feels like death after she does. She really resisted taking a break from dance earlier in the year, but she's ready now---fortunately, it's the end of the season in a couple of weeks, so she wants to finish up this last performance and then let it go. It's hard, though---she has worked so hard to get to the point where she can dance professionally, and this whole season has been horrible for her. She's starting to get excited about going to college...I'm sure you remember what it's like, when the only thing you do is dance and nothing else. The idea that there is so much out there that she hasn't been able to try is exciting and a little scary at the same time. I think it will be the routine that will be the hardest to deal with, it's been the same for years (get up, morning class, rehearsal, afternoon class, evening stretching, etc.). I hadn't thought about dehydration---I'll have to see how much she's been drinking throughout the day. Thank you for your kind thoughts, it's very much appreciated right now!
 
DanceMom---have they ever been able to pin anything down with your daughter? They don't even have partial answers right now. I think they're going to slap an IBS-D label on it and call it a day. Or at least they're going to try, anyway...you're right, being patient is hard right now. I feel like I've been patient for YEARS and YEARS---all the scopes and bloodwork and imaging, and nothing. Very frustrating, both for her and for me. That seems to be the norm with GI issues, I'm noticing. Blech.
 
The guideline is half your body weight in ounces of water a day... so if she weighs 100 pounds that is 50 ounces. Then a bit more for an athlete or dancer because they are sweating so much off. I forget the rule of thumb but I think it is if you are going non stop for an hour or more then you really need an electrolyte replacement as opposed to just straight water.

Also if she drinks caffeine she should probably try to lay off it for a bit as it is a diuretic...chocolate also:( And believe it or not zucchini

I am glad she is excited about college. I was miserable. Dragged to orientation with gloom and doom. The last place on earth I wanted to be. Two weeks later it was like I was at my dream school and lie was the best ever. I managed to dance with dance team and in a few productions at the school...as long as they didn't need me to leap I was golden.

Good luck and keep us posted!
 
The clinical presentation of dumping syndrome can be divided into GI symptoms and vasomotor symptoms.[20] GI symptoms include early satiety, crampy abdominal pain, nausea, vomiting, and explosive diarrhea. Vasomotor symptoms include diaphoresis, flushing, dizziness, palpitations, and an intense desire to lie down.

The expression of these symptoms varies in different individuals. Most patients with early dumping have both GI and vasomotor symptoms, while patients with late dumping have mostly vasomotor symptoms. Patients with severe dumping often limit their food intake to avoid symptoms. This leads to weight loss and, over time, malnutrition.

Early dumping syndrome generally occurs within 15 minutes of ingesting a meal and is attributable to the rapid transit of food into the small intestine, whereas late dumping syndrome occurs later and may be attributed to hypoglycemia with tremors, cold sweats, difficulty in concentrating, and loss of consciousness.[21]

Early dumping systemic symptoms are as follows:

Desire to lie down
Palpitations
Fatigue
Faintness
Syncope
Diaphoresis
Headache
Flushing
Early dumping abdominal symptoms are as follows:

Epigastric fullness
Diarrhea
Nausea
Abdominal cramps
Borborygmi
Late dumping symptoms are as follows:

Perspiration
Shakiness
Difficulty to concentrate
Decreased consciousness
Hunger
Click to expand...

Medscape has a good article about Dumping syndrome. You have to make an account, but it's free.
 
:worthy: Maya!

New reality competition show. Teams are given a situation and sent off to google to find the solution. We would dominate and be champions of the world...undefeated for 20 seasons! I vote MLP and Maya as team captains!
 
crohnsinct - good Lord, zucchini is her favorite thing ever! I had no idea...of course, right now there's not much she can eat anyway.

I think you and Maya142 would crush any google reality show, lol. Now if you could just have the show set on a tropical island. With cocktails. THAT would be a reality show!
 
Teams are given a situation and sent off to google to find the solution. We would dominate and be champions of the world...undefeated for 20 seasons! I vote MLP and Maya as team captains!
Click to expand...

Can we call it "the Hunger Games" ;)??
 
Chrys2564 said:
DanceMom---have they ever been able to pin anything down with your daughter? They don't even have partial answers right now. I think they're going to slap an IBS-D label on it and call it a day. Or at least they're going to try, anyway...you're right, being patient is hard right now. I feel like I've been patient for YEARS and YEARS---all the scopes and bloodwork and imaging, and nothing. Very frustrating, both for her and for me. That seems to be the norm with GI issues, I'm noticing. Blech.
Click to expand...

We know she has low IgG, so she receives IVIG therapy for that. We just aren't sure why it's low. Her recent biopsy found intestinal lymphangiectasia but the GI didn't seem to want to move on that (even though the symptoms fit). We see the Immunologist in June and I plan on getting her opinion. Not super hopeful we'll get answers soon though.
 
What is her white blood cell count? When they are low, my kid gets the mouth ulcers.
I know you said they didn't want to do a fecal calprotectin (some docs don't do them), but what about other inflammatory markers like CRP and sed rate?
 

Similar threads

Maya142
Surgery questions and experiences
Replies
9
Views
2K
Maya142
Maya142
F
does this seem like IBD?
Replies
33
Views
4K
my little penguin
my little penguin
C
Colonoscopy Sutab/Suprep prep
Replies
3
Views
1K
Maya142
Maya142
S
Chronic Fissure and now more than one
Replies
11
Views
2K
my little penguin
my little penguin
A
What would you do?
Replies
22
Views
2K
Delta_hippo
D

Latest posts

Back
Top