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11-24-2016, 03:38 PM   #1
Theosmom
 
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Location: Los Angeles, California
I would love your feedback

Hi everyone! I have been combing through all your posts and have gotten so much out of them! So thank you all for all you share.

My son is 12 and has had stomach pain for a few years. A couple of years ago we took him to a GI. She did some tests and found he tested pos for hpylori. We treated him with two antibiotics and he seemed to be doing better. A year and a half later he was having pain daily. The double over, needs to curl up in a ball kind of pain. We took him back to the GI. She did more tests. They came back with hpylori again, anemia, lactose intolerance and a high c reactive protein number. We treated hpylori, limited dairy and started with lactaid, added iron. When he was retested to make sure the hpylori was treated, she did calprotectin. The hpylori was gone and his calprotectin was 1100. So we had him scoped-colonoscopy and endoscopy. Both were normal and his pain had abated. We retested c reactive protein, iron and calprotectin. C reactive protein is still high but coming down slowly. Iron still low but coming up slowly. But calprotectin is now 1590. My husband and I are concerned. The GI is not concerned. We're not sure if we should get him a second opinion. He is not in pain really at all. He's not really gaining any weight. He's 92 pounds at 5'4". Every day we try to get as much food into him as possible. We are trying to figure out what to do next. Any insight, opinion or advice would really be appreciated.

All my best for a happy thanksgiving.
11-24-2016, 03:42 PM   #2
ronroush7
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I would go for a second opinion myself. Happy Thanksgiving to you and your family.
11-24-2016, 03:54 PM   #3
Clash
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I would ask for an MRE (magnetic resonance enterography) or possibly a pill cam. Either of these can give the GI a view of the majority of the small bowel that cannot be seen with either scope.

If the GI you are seeing isn't willing to do these rets I would look to a second opinion.
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Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
11-24-2016, 07:17 PM   #4
Maya142
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I agree - he needs some kind of small bowel imaging. Either infection or inflammation would cause the high Fecal Calprotectin. It sounds like she has tested for infection, and even though his scopes were clear, IBD can hide in the small bowel. An MRE or pillcam is a good idea.

Not gaining weight and not growing are both red flags. Even if he isn't in much pain now, they need to figure out what's going on.

If your GI will not do more imaging, I would get a second opinion. The best three IBD centers for kids are Boston Children's, CHOP and Cincinnati Children's. Boston Children will do a records review online, I believe.
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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
11-24-2016, 10:19 PM   #5
my little penguin
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I agree with the above posters
Imaging should be automatic
Something is easing that fecal cal
Second opinion with fresh eyes can be useful as well
We have gotten more than one for my kiddo
Our gi welcomes any and all second opinions
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11-24-2016, 10:19 PM   #6
Pilgrim
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I would be very concerned about the fcal number rising. I wonder how the GI would explain that away? Did he have any insight about that?
11-25-2016, 07:43 AM   #7
ronroush7
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I would be very concerned about the fcal number rising. I wonder how the GI would explain that away? Did he have any insight about that?
Agree
05-07-2017, 06:57 PM   #8
Theosmom
 
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Thank you all for your responses. I haven't been back to this site since I posted this. Back in November we were led to believe that my son's problems were caused by h-pylori. He did have a colonoscopy and an endoscopy which were both normal, however, we just brought him home from the hospital where he spent 4 nights and has been diagnosed with Crohn's. He threw up for 12 hours, had excruciating pain and finally got a CT scan. I'm sure you all know how hard this is. He's home from the hospital, he'll go for a follow up a week from tomorrow and an MRE 2 weeks from tomorrow to see if he needs surgery or if he can just go on humira or remicade. The hardest part right now is trying to figure out what to feed him to ensure his bowel recovers. Any and all tips are welcome. It seems as if chicken and white rice are a good option. I'm grateful for this forum. Thank you all for participating.
05-07-2017, 07:12 PM   #9
ronroush7
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Have you tried him on a nutritional drink?

05-07-2017, 07:14 PM   #10
Maya142
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I am glad you finally got a diagnosis. Sorry to hear it is Crohn's, but at least you have answers.

In terms of food, did your GI give you any advice? If they're worried about a stricture or narrowing, I would stick with low residue foods. CCFA has good info on their website.

Another option would be exclusive enteral nutrition (EEN). It is a formula only diet - usually for 6-8 weeks. It induces remission - works as well as steroids for inducing remission and works even better for mucosal healing. It is a first-line treatment in other countries.

Some kids are able to tolerate OTC formulas like Boost and Ensure. Others need more broken-down formulas, like Peptamen Jr or Pediasure Peptide, which are semi-elemental. Most kids will tolerate semi-elemental formulas, but for the kids that don't, there are amino acid formulas available (Neocate and Elecare are examples).

It depends on the GI and what they prefer to use - our GI insists on a semi-elemental (or elemental) formula, but others are ok with polymeric formulas like Boost. The more broken down, the less palatable the formula is.

My kiddo hated Peptamen Jr. at first but did get used to the taste. However, she was not able to drink enough to maintain her weight (much less gain), so we went to an NG tube. That was a life-saver and was much easier and less intimidating than it sounds.

Some kids needs tubes, but others are able to drink the shakes orally.

Some kids to EEN to induce remission but another option would be supplemental EN, just to keep weight up (and for nutrition). It also helps with growth. Usually that means several shakes a day and some food (for example, 50% food, 50% formula). That may be an option, if you don't want to try EEN.

I will tag some other parents whose kids have done supplemental EN or EEN:
my little penguin
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Tesscorm
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05-08-2017, 09:45 PM   #11
Tesscorm
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I'm sorry you've had this diagnosis for your son. It is a tough adjustment but, it's hardest at the beginning. As you learn and you see your son heal, things will become 'normal' again and the worries will lessen.

I'd also encourage you to look at EEN. This was the first treatment recommended for my son (he was 16 when diagnosed). He did EEN for six weeks to induce remission and then followed that with two-plus years of supplemental EN. It worked very well for him. The initial six week period took away all his symptoms and the continuing supplemental EN allowed him to eat a regular diet and take in additional nutrition. He gained back all lost weight and more. It also helped carry him through the developmental stage from teen to man. All together, he went from 125 lbs to 180 lbs and went from 5'10" at diagnosis to approx. 6'.

At your son's age, it's even more important that he receives the nutrition he needs to grow and develop. Regardless of treatment (medication), I'd highly recommend some supplemental EN.

My son used an NG tube for the two plus years (exclusive and supplemental) and ingested an elemental formula (horrible taste), so an NG was necessary. But, it was much, much easier than it sounds... he inserted the tube each evening (took seconds), ingested the formula overnight while sleeping, and removed the tube in the morning (even easier than inserting). But, it might be harder for a 12 year old???

Once my son was stable, I did ask him if he'd prefer to drink the shakes (a more palatable brand) rather than use the NG tube but he said he preferred the tube. He didn't want to worry about 'having' to drink shakes and preferred the convenience of just inserting the tube and having it all happen while he slept.

So, might be an option for a 12 year old??

But, regardless, there are many kids here who drink their shakes - the tube isn't essential.

In the meantime, do stick to a low residue diet - low fibre, smaller meals if he's having a hard time digesting, etc. No seeds, nuts, popcorn, etc.

Just on a separate note, ask to have your son's immunity levels checked for measles, mumps, chicken pox, etc. Once he begins an immunosuppressant or biologic, he will not be able to have any live vaccines. However, if he needs a 'booster', you will need to discuss this with his doctor. Having a vaccine will mean delaying the start of his medication, so you and his doctor will need to decide if there is more risk in delaying the start of his med??

And, remember, the beginning is the hardest! Things will get easier as you see your son looking and feeling good!
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Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
05-08-2017, 09:58 PM   #12
cmack
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Best of luck to you. I hope your son gets better soon.
05-08-2017, 11:47 PM   #13
Justanothercp
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Maybe look at scd diet... start at intro phase.
05-19-2017, 12:06 PM   #14
American Wolf
I would try a liquid diet like smooths or something. I have lost weight from this crohn's and it's not easy especially when you get a flare up
I would still give him chicken and rice and if he can eat berries too it might help. It works for me, I would get reed of dairy products, I know for me it makes me flare up. I tried almond milk or something similar it depends on how your son feel some times it helps and other times it doesn't. I would get a second opinion if you can. I hope your son crohn's become controlled soon
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