05-08-2019, 02:47 PM   #1
GirlwiththeCurl
Senior Member
 
GirlwiththeCurl's Avatar
 
Join Date: Jun 2015
Location: Wyoming
L update

Hi!

L is doing okay. She's actually having an upper gi scope next week (continuing restrictive eating, nausea when she eats more than just a little, diffuse abdominal pain--but these issues are either fairly mild or she's learned to live around them because she basically is cheerful and appears healthy). I don't expect the doc to find anything. She's actually doing CBT for anxiety to see if she learned to restrict her eating initially and now is doing it preventatively. I haven't told her GI about this yet because I don't want symptoms put down to anxiety by default. She's still has occasional pain during bowel movements (which can be bad--but it's infrequent and gi is inclined to think it's functional because of this and lack of other signs/symptoms). Her blood is good (as usual) and while she isn't quite like other kids in her eating and bathroom habits, she just seems pretty normal overall. I'm sure if anything shows up on her scope I'll be back asking questions.
05-08-2019, 06:23 PM   #2
Maya142
Forum Monitor
 
Maya142's Avatar
Are they not doing a colonoscopy too, considering they're putting her under anesthesia anyway?

Have they ever suggested a gastric emptying scan? My daughter had issues with eating but it was due to nausea due to Gastroparesis. It got so bad that she became severely underweight and was hospitalized several times for tube feeding.

Once we found a medication that worked for her Gastroparesis, she started to like to eat! In fact, she went from hating and dreading meal times to looking forward to them. She had been in pain and nauseous for so long that she didn't even remember what it was like to enjoy food.
__________________
Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
05-10-2019, 10:43 AM   #3
GirlwiththeCurl
Senior Member
 
GirlwiththeCurl's Avatar
 
Join Date: Jun 2015
Location: Wyoming
Maya--I was bemused about putting her under anesthesia and not just doing a colonoscopy also, but her GI is pretty strict about not ordering stuff there isn't a clear and present indication for. Even with her eating habits and nausea she waited six months to see if a course of omeprazole would fix things (and to be fair, the omeprazole helped, though it didn't eliminate the issues) before ordering the upper scope (and while her reasoning for ordering it makes sense, my gut feeling is that everything will be normal--I guess we'll see if my gut feeling is correct).

I have also wondered about gastroparesis. I may ask the GI about it if everything looks good on this scope, but I strongly suspect that as long as L is gaining some weight she won't pursue any action--L finally gained about three pounds in the six months after starting the omeprazole. And L is so practical that it doesn't occur to her that she should mention not being able to eat much or to eat certain foods--she just works around it to the best of her ability. If I ask her straight out about it she'll say eating very much makes her feel sick but if the doctor asks how she's doing she'll say she's doing great.
05-10-2019, 12:38 PM   #4
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
Can you go elsewhere to get a better fit for your dd ?
Some kiddie docs are better at communicating with kids than others
To get the true answers
You shouldn’t have to fight so long to get your child well
And not do testing based on a child answer due to lack of understanding

Poor l
__________________
DS - -Crohn's -Stelara -mtx
05-11-2019, 11:16 AM   #5
GirlwiththeCurl
Senior Member
 
GirlwiththeCurl's Avatar
 
Join Date: Jun 2015
Location: Wyoming
MLP-- yes, I agree, and yet the things I see are subtle and I don't really blame the doctor for assuming the best. I also can see how anxious I've been since her diagnosis,and yet L is growing (slowly) and, as far as I can tell, able to participate in all the things her peers are doing. As long as L is growing and able to navigate life successfully, I'm trying not to put every blip I notice under a microscope (figuratively). The eating issue has been ongoing and we are looking into some things for that, of which this scope is one.

That said, I'm not sure that this doctor and I communicate well. I've been considering options there, too, but every time I've been ready to move on something positive has happened that has made me pause.
05-11-2019, 11:49 AM   #6
Maya142
Forum Monitor
 
Maya142's Avatar
Nausea and being unable to eat and gaining very slowly are "big" enough issues that I'd be concerned about. Waiting 6 months for Prilosec to work also seems like a bit much. We have waited 6 weeks and if a PPI did not help in that time, our GI switched M to another one. The second one worked.

I think it would 1) be helpful for you and L to discuss the GI visit beforehand. Explain to her that it's very important she tells the truth about how she's feeling. Explain that if the doctor doesn't know what's going on, she won't be able to figure out how to help L feel better.

2) I don't think a second opinion is a bad idea. It doesn't necessarily mean switching GIs - just to get a second set of eyes to look at L's situation.

3) Honestly, considering her symptoms, I'm really surprised a gastric emptying test wasn't ordered. We went through the same things to get M diagnosed. Did 6 weeks or so of a new PPI. Then an endoscopy, which showed gastritis but not enough to explain the nausea. The PPI helped a bit, but not a lot. So a gastric emptying test was ordered.

Now M was losing weight and already underweight when all this started, so it's possible that's why her GI moved more quickly.

But a gastric emptying scan isn't too much to ask for, given her symptoms. The fact the the Prilosec helped doesn't mean it's not Gastroparesis. Reflux and Gastroparesis go hand in hand - my kiddo needs both a PPI and a motility med or she just can't eat.

I would also say follow your gut. You know your kiddo better than anyone. You can even start a log of how many times she complains of nausea, won't eat etc. That way you have some data to show her doc.
05-13-2019, 06:22 PM   #7
GirlwiththeCurl
Senior Member
 
GirlwiththeCurl's Avatar
 
Join Date: Jun 2015
Location: Wyoming
Well, L did great (other than letting every single doctor and nurse know that she was HUNGRY). Everything was visually normal except for some very mild-looking antral gastritis, which the GI (not L's usual doc) said wasn't terribly uncommon but biopsies would give us a fuller picture. Results in five business days. I asked Dr Google what it thought about antral gastritis, but there are too many different causes and variables to sort through without knowing what the biopsies say. I must say that L's symptoms do match up nicely with chronic gastritis, though.
05-13-2019, 11:21 PM   #8
Maya142
Forum Monitor
 
Maya142's Avatar
My daughter has had many scopes with gastritis. Typically they put her on Carafate for a while. Gastritis does cause nausea and pain after eating. It can actually cause pretty intense pain if it's bad - when my daughter's gastritis was "moderate," she had a lot of stomach pain, especially after eating certain foods. Anything that was fried or greasy, and foods that are known to cause reflux - tomatoes, chocolate - were out for us. Bland foods worked best - easy to tolerate.

However, gastritis and Gastroparesis can be connected - Gastroparesis causes reflux and reflux causes gastritis, so if she doesn't get better with something like Carafate or Maalox, then I'd reconsider a gastric emptying scan.
05-14-2019, 05:07 AM   #9
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
Same here
Lots of gastritis
Which led to gastroparesis
Reply

Thread Tools


All times are GMT -5. The time now is 10:11 AM.
Copyright 2006-2017 Crohnsforum.com