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11-22-2016, 11:35 PM   #1291
CarolinAlaska
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Another update. My daughter is 1 week out from laparoscopy and her pain has started to worsen. Went to doctor today. No signs of endometriosis or cancer. Cyst was dermoid. Doctor said she looked around and noticed her colon was distended which is common in IBD and IBS. Recommended for us to see another gastro doc for 2nd opinion. She feels as though she has done everything she can as a gyn. Guess we will wait until after the holidays and see if pain is any better and if not we will continue this frustrating heart wrenching journey.
Michelle,

I'm sorry your daughter is suffering. Is ahe on her menses this week? That might make her belly pain temporarily worse.
11-23-2016, 08:44 AM   #1292
Michellejk
 
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No, it would be nice if that was the case though.
11-23-2016, 08:50 AM   #1293
Michellejk
 
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Catherine,

We will be going to see another gastroenterologist but will wait until she is healed from her laparoscopy first. Poor kid is so tired and frustrated with doctors. This one suggested removing dairy, gluten etc which was one of the first things we did over a year ago without any results. Then suggested the Paleo diet. We have done ALL of this, my daughter has had this pain since June of 2015. She has been tested for gluten multiple times, no matter how many times we tell them that she is negative, everyone seems to have to check for themselves. I am so... over doctors!!!!
11-23-2016, 10:12 PM   #1294
CarolinAlaska
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Michelle, I can totally relate to that.
12-16-2016, 10:53 AM   #1295
pooksmom
 
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So I am confused and all the big words the Dr. uses to help reassure me dont help. It might be nothing but let me put a camera up his but and see?
'' has he been abused?" they ask ? I AM SURE 100 PERCENT HE HAS NOT. weird question for me to hear from a doctor? Doesnt everyone think so though , who thinks there kid has been abused. I mean I am not a simple person.. so I rethink his life and no...unless at school ,thats crazy right.. what exactly does an anal fissure in the 7 oclock mean . I am not even there yet. what about that time he had hernia surgery and I was worried they could have stole a kidney , they could have, How would I know?Shouldnt we be allowed to watch surgery on our kids? Anyway moving on..the primary doctor asked me about abuse... while side stepping all indications he needed to see a GI
It is with mixed reaction that I report luckily /unluckily that they did want a stool sample (the 2nd one ) to run "more test" so he at that exact sample time, pooped out what looked like two aborted fetuses pardon my bluntness this is all new and shocking.
So I call the doc and say hey I got you that stool sample but it looks like he pooped out a liver (this is where they tell me he was negitive for blood in his first one ) Great I say . except ...I can tell you this one wont be. Oh they are not testing for blood in this sample. I feel awful for the poor techs. Anyway they send my son to the ER , i take the sample cause someone needs to see it ,right,?
The ER doc gives me my first real clue something is WRONG. like really. autoimmune , he expeled some of his intestinal lining. So here I am waiting for tuesdays colonoscopy. Knowing nothing about test they have run already except his red blood cells are small so they are looking into a genectic form of amenia but want more test next week.And the first test showed no blood in his stool. <eye roll> He is 11.
12-16-2016, 02:17 PM   #1296
CarolinAlaska
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I'm so sorry you and your son have boarded this nightmare train. I wish I could tell you how to safely get off.
01-03-2017, 06:13 PM   #1297
pooksmom
 
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So ,mY 11 YR baby boy has a DX of Crohn's. What now?

Last edited by pooksmom; 01-03-2017 at 07:37 PM.
01-03-2017, 10:17 PM   #1298
Farmwife
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I so sorry to hear this.
When if his follow up appointment?
Do you know any pacifics of what they found during the scopes?
What did his doc have to say about medicine?
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
01-04-2017, 12:39 PM   #1299
pdx
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So ,mY 11 YR baby boy has a DX of Crohn's. What now?
Sorry to hear about your son's diagnosis. His doctor should schedule a followup visit with you to talk about treatment options. You'll find a lot of good info about all the options here on this forum, and feel free to ask questions here too about them too.
__________________
Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (currently on 9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Topical clobetasol for Remicade-induced psoriasis
01-07-2017, 05:06 PM   #1300
pooksmom
 
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I so sorry to hear this.
When if his follow up appointment?
Do you know any pacifics of what they found during the scopes?
What did his doc have to say about medicine?
The scope shows 'blisters' in the bottom end of the colon and on the lower part of the ileum His esophagus show so swelling . The calprotectin test had numbers over a 1000, she said. He had an MRI yesterday result will be back monday.

In the mean time he was in pain and not being treated with anything. I took him to his primary and they put him on Pentesa They could not do anything t they said, for his anal fissue except anusol ,which did nothing. I got him the spray that they give woman who have been cut or tore doing childbirth durablast and that really helped him with that part . So far I am very disappointed in the care he has gotten and I know that the only reason he has been dxed this fast is because the ER doctor I took him to, just about had him admitted to an out of network hospital. They followed his intrustions of getting him into a GI within 24 hours. So he backed down. After that however they are back to playing games . his GI wants to phone consult his treatment plan to me on monday. This is our first real conversation about what is going on so I want a face to face.

He is anemic ,with very high CP levels.. He has lost weight 10 pound since 11/25 16. 4 of those from 12/14/ tp 12/27.

Definitely less pain since the pentesa but now he is going 2 or 3 days without pooping and then pooping a massive amount. Which triggers the pain all over again. I decided to give him stool softeners least night to ward off that issue . However, I worry I might do harm my making a wrong move or meal or food choice. and I do not have a lot of faith in the doctors of this disorder. They do not know what causes this . Here it was it does but it is different for everyone... does not seem to be a lot of science issue concerning the doctors words and what they say ,imo. Early in the game for me so maybe that is a rush judgment.

Last edited by pooksmom; 01-07-2017 at 07:51 PM.
01-07-2017, 10:25 PM   #1301
Farmwife
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Your reaction is completely understandable.
We've all been there and it will get better in time.
However his care is down right unbelieving.
Can you seek a second opinion?
No primary doc should have to do what a pediatric GI should be doing.

Also now that there's a dx can you make a thread in the parent forum.
You'll get more views and replies that way.
02-06-2017, 03:15 PM   #1302
Michellejk
 
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Update with my daughter. I would say she is 60% better with the adhesion and cyst removed. She still has fatigue, but not as severe. She still has nausea daily, some stomach pain (but more manageable), constipation is still a problem, no more headaches (woo! Hoo!), still has back pain. We will be scheduling another Gastro appointment, but for now, we are relaxing a bit from doctors. Thank you all for all of your kind words, advice and letting me know I wasn't alone.
02-06-2017, 04:37 PM   #1303
CarolinAlaska
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Update with my daughter. I would say she is 60% better with the adhesion and cyst removed. She still has fatigue, but not as severe. She still has nausea daily, some stomach pain (but more manageable), constipation is still a problem, no more headaches (woo! Hoo!), still has back pain. We will be scheduling another Gastro appointment, but for now, we are relaxing a bit from doctors. Thank you all for all of your kind words, advice and letting me know I wasn't alone.
Yea for a break from doctor appointments.
02-07-2017, 07:15 AM   #1304
Farmwife
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I glad for the reprieve in pain.
I hope it continues for along while!
02-07-2017, 06:31 PM   #1305
MissLeopard83
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Update with my daughter. I would say she is 60% better with the adhesion and cyst removed. She still has fatigue, but not as severe. She still has nausea daily, some stomach pain (but more manageable), constipation is still a problem, no more headaches (woo! Hoo!), still has back pain. We will be scheduling another Gastro appointment, but for now, we are relaxing a bit from doctors. Thank you all for all of your kind words, advice and letting me know I wasn't alone.
I had an ovarian cyst, as well, and I originally thought the symptoms were GI related as did my PCP. My gynecologist didn't even visualize the cyst on pelvic ultrasound as it was slow-leaking. When I had my laparoscopy/hysteroscopy/D&C in October 2016, his preliminary diagnosis before surgery was endometriosis. Not the case - it was an ovarian cyst which caused a big surprise and endometrial hyperplasia. Getting the cyst removed made a HUGE difference for me and I am so glad your daughter is feeling better after getting hers removed. I hope you can get answers as to why she is continuing to have symptoms.
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03-19-2017, 08:59 AM   #1306
braveheart
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I've had Crohn's Disease for more than twenty years and now I am very worried about my little son.

He is only 4 years old and I think he is starting to show some symtoms of IBD. He doesn't eat very well and seems to have nausea all the time. He belches many times a day not only after meals. He vomits almost once in a week. We are doing an effort trying to give him the foods that like him most but problem is the same. Quality or his stools are not always good he has a very light diarrhea often. I think he has eye-bags (my wife says I am wrong, his skin is just a little pale and looks like having eye-bags).

On the bright side he is very active and never ever said he had pain. And I've never see blood on his stools or vomits.

We visited two pediatricians and they say all the problems I described are very common for healthy kids at his age and does not mean he has any heath problem at all. He lost 4 ounces during the last 4 months, which is nothing to worry about according to doctors.

I can perfectly understand that kids can have tantrums at mealtime and we are doing an effort trying not telling him of or push him to eat, but I think those tantrums cannon last several months. Also if he refuses to eat (or eats very little) at lunch time he would be a bit hungry at dinner time and that is not happening. Moreover I do not think that having a very slight diarrhea could something a kid can do on purpose or something emotional. I know kids does things to challenge/manipulate parents but if that is the case my little son is one of greatest psychopaths of history :P

As you can see I am very worried about this situation. My wife thinks I am a bit paranoid with this but I think I have many reasons to be worried. I've seen that 20% of Crohn suffers have a closer relative who also have IBD. In my case I do not have (still) any relative but my father has Arthritis, which is also a problem with the immune system.

I think I may try to go back to the pediatricians to see if they can suggest an ultrasound scan or something to explore more. I don't know how kids are diagnosed. It looks like unless you come to ER with a bowel blockage and end up in an emergency surgery they are not diagnosing anything.

Any feedback is appreciated. Thank you.

Last edited by braveheart; 03-19-2017 at 09:21 AM.
03-19-2017, 12:23 PM   #1307
my little penguin
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Kids that age can live on a single pea for days
That said
A stool test fecal caloprotectin is not invasive and can tell you if inflammation is present

Getting full quickly
Vomiting once a week
Sounds like my sons gastroparesis
Delayed gastric emptying

Tagging maya142
There are a lot of things that can cause GI issues
Can you get a referral to a pediatric GI at a major university hospital ?

They can check things out

More for you and keep an eye on him
To determine if any testing is needed
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03-19-2017, 01:05 PM   #1308
Maya142
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It could be Gastroparesis (delayed gastric emptying). The symptoms usually are early satiety (getting full after a few bites), nausea, vomiting, stomach pain (often after meals), weight loss, reflux. Not all kids have every symptom - my daughter's main problems were extreme nausea and weight loss.

It can be diagnosed with a gastric emptying test. The kiddo eats eggs mixed with a radioactive tracer and pictures are taken over the next 4 hours to see how fast the meal empties from his stomach. If more than 10% of the meal is left at 4 hours, then the child is diagnosed with Gastroparesis.

It's a fairly easy test - just long and boring (at our children's hospital, my daughter got to watch movies during the test, so it wasn't so bad).

It's worth asking about. I'd also ask for a fecal calprotectin - that will tell you if there's inflammation in his gut and whether scopes are needed. It's a simple stool test and non-invasive.

Good luck!!
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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
03-21-2017, 10:39 AM   #1309
braveheart
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Thanks Maya and My Little Penguin.

Gastroparesis, I never heard about it. It seems like a very soft version of Crohn's Disease. Is there a treatment for that? What do you do to deal with it?
03-21-2017, 11:50 AM   #1310
Maya142
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It is not a kind of Crohn's disease, it's a motility disorder. Motility medications (like Erythromycin, Domperidone) are used.

It's a completely different condition, not related to Crohn's disease at all (usually).
03-22-2017, 02:58 PM   #1311
braveheart
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Thanks Maya.

I will let you know how it goes and what the doctors say.
03-27-2017, 05:16 PM   #1312
Lucia22
 
Join Date: Aug 2016
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Hi, I posted in the summer about my daughter who has bad stomach pain, gastric reflux, chronic constipation, constant nausea, chronic fatigue, blue/white toes, palpitations, fast heart beat, dizziness, hypermobility and heel pain. She had an endoscopy and colonoscopy last year. Calprotectin levels were very high. Investigations appeared normal and the doc diagnosed IBS and discharged us from clinic. Rheumatology also discharged her. That would all be great if she wasn't feeling worse, with more frequent symptoms. She now feels faint a lot and see shapes and colours with pixelated vision. Seeing a new gastro who wants to do a capsule endoscopy under a general and repeat Calprotectin. He said there is part of the bowel that can't be accessed by the usual tests but the first gastro said all was clear. Also suggested trying meds for abdominal migraine and antibiotics. However, my daughter's symptoms do fit in with POTs and I understand that stomach problems can be part of this condition. I would love to hear from anyone who has dealt with anything similar. Thanks.
03-27-2017, 05:40 PM   #1313
Farmwife
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Have they looked at Ehlers-Danlos Syndrome?
The new gi is right. The scopes can't see the whole bowel.
I'm glad he wants to investigate further.
As far as I know, ibs does not cause a high Calprotectin level.
03-27-2017, 05:47 PM   #1314
Maya142
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She could have POTS and IBD - I'd definitely do the pill cam, if her Calprotectin is high.
03-27-2017, 06:01 PM   #1315
BoyMama2000
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I would ask for a fecal calprotectin test to see if he has any signs of inflammation....that may help you to decide if further testing is warranted or if this is just something he will get through. My oldest had those symptoms and does not have Crohns...my middle son has Crohns and never had gut issues young so we never know do we. Best of luck to you and your son.
03-27-2017, 07:07 PM   #1316
Lucia22
 
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Thanks everyone for such quick replies. It's so good to hear from other parents in similar situations. Has anyone managed tto swallow the pill cam? I would rather she didn't have another general anaesthetic if possible but I heard the pill cam is large. The new gastro wants to do another endoscopy but I don't see the point if he can't see any further into the bowel.
I've also wondered about EDS but she doesn't get dislocations. Well not so far anyway but she does seem to fit the criteria for POTs as her heartbeat goes up a lot when she stands up. Can you have EDS without dislocations? We can't find a decent rheumatologist. They just tell us they don't know what's wrong and tell her to exercise! If only she could.
03-27-2017, 07:32 PM   #1317
Maya142
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The pillcam isn't that big. It's the size of a large pill. Your daughter is a teenager, right? I think she'll be fine. My daughter was able to swallow it without any problems at 16.

Some doctors do place the pillcam in the duodenum during scopes - usually so they don't have to worry about it sitting in the stomach or for little kids who can't swallow big pills.

But it depends on the doc and their preference.

There are also enteroscopies - like an endoscopy that goes deeper into the small bowel. My daughter has had two. They can't go through the entire small bowel unless they do a double balloon enteroscopy (which is slightly riskier - the risk for perforation goes up) but with a regular enteroscopy they do go further than a regular endoscopy.

If they are planning to do that, then I'd have the pillcam placed in her duodenum during the test, since she'll be sedated anyway.

A rheumatologist should be able to tell if she is hypermobile.
03-27-2017, 07:35 PM   #1318
BoyMama2000
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Two of my kids have swallowed the pill cams with no issue at all. Once they put it in the scope so they could do the upper GI and then see the rest of the duodenum, jejunum and ileum. It worked just fine as well. I agree that you want to see the small intestine during any new study.

In fact, my youngest son (also without Crohn's but needed ruling out) swallowed it at age 14 without any water. He said it was weighted and went down very easy!
03-27-2017, 10:00 PM   #1319
my little penguin
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We typically have an upper and lower scope done and at the end the GI places the pill cam in the duodenum
This way we are sure to get good pics of the entire small intestine
Because the pill cam can bob around in the stomach otherwise

If it has been a year
Well worth the new upper and lower scope
Since Crohns and be patchy
When Ds was first dx the scope itself looked good
GI got lucky with samples that showed the inflammation on what he thought was healthy tissue

Wishing you the best
03-28-2017, 12:28 PM   #1320
Katrina9
 
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I hope you are able to get the dx you need as soon as possible. We were fortunate in that it took just 4 weeks from presentation of first symptoms (loose stools) on 11/1 - we thought she had a persistent stomach bug until we started seeing blood) to diagnosis. They quickly did blood work and stool samples and she had her colonoscopy and endoscopy on 12/1 and were able to dx ulcerative colitis. (Since then it's been a little back and forth between Crohn's and colitis). For us, the scopes gave us the dx.

As was said, given that you already have a child with IBD you would think that your docs would be pretty pro-active to check this out!! Best of luck to you.
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Kathy

Daughter, 16
IBD: Ulcerative Colitis; indeterminate
First symptoms November 1 2015
Dx December 1 2015
3 hospital stays since January 2016
Remicade since April 2016
Oral MTX since July 2016
Also on omeprazole, Folic Acid, Uceris
Also bipolar disorder and Tourette's; Risperidone and Clonidine
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