Crohn's Disease Forum » Parents of Kids with IBD » Ng Tube is out - is he in remission now


01-02-2018, 10:06 AM   #1
pathfnd1
 
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Ng Tube is out - is he in remission now

Hello I am new. My grandson was diagnosed with Crohsn 8 weeks ago. He had an abscess in his lower interesting and was in hospital 2 weeks. Went home with an ng tube. The ng tube is out now after 8 weeks of enteral feeding. He is 10 and gained about 12 pounds. He will be drinking 2 shakes a day now and is supposed to eat "normally." Does the removal of the tube mean he is in remission? I was a bit surprised it was removed so soon. Is there a high rate of remission success once an ng tube is out? He still does remicade every 8 weeks. Thanks.
01-02-2018, 12:28 PM   #2
my little penguin
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No he is not in remission but may be getting close
The enteral feeds reduce the inflammation

But once solid food is added back the inflammation will return unless another med is started
Since he started remicade
Remicade will take care of the inflammation from now on
So your grandson should be better even though the ng is out

Good luck

Ds was dx at age 7
Did 9 weeks of enteral nutrition only
Then drank 3 shakes a day
Plus meds
6-mp/methotrexate and later biologics
He has been on remicade and humira
Now is taking Stelara

Crohns is life long
It doesn’t go away
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DS - -Crohn's -Stelara -mtx
01-02-2018, 01:02 PM   #3
Maya142
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Generally, exclusive enteral nutrition (EEN - formula only) is used to induce remission and a medication like Remicade is used to maintain it. Usually, formula is reduced and food is added back slowly. It sounds like that is what your GI is doing since he is keeping your grandson on some formula (two shakes) and is adding solid food back. I would stick with bland food at first to see what he tolerates.

How is he doing in terms of symptoms? Remicade can take more than 8 weeks to work, so if he still has some symptoms don't lose hope. They can also add medications like MTX to "boost" Remicade, or they can increase the dose or frequency of Remicade, if needed.
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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
01-02-2018, 01:32 PM   #4
pdx
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Hi and welcome to the forum. I'm just across the river from you. My daughter's experience was similar to your grandson's: hospitalization, Remicade, and ng-tube. She's been doing well on Remicade and methotrexate for 3 years now. As Maya mentioned above, though, it can take a while for Remicade to work. In my daughter's case, it took almost 6 months, and her doctor did need to increase the dose and frequency a few times. She also ended up doing supplementary ng-tube feeding at night for a few more months until the Remicade really kicked in.

Good luck--hope your grandson's treatment works well for him.
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Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (20 mg weekly)
vitamin D, folic acid, iron, 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, 3/24/18-5/18/18
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Clobetasol for Remicade-induced psoriasis
01-02-2018, 01:39 PM   #5
crohnsinct
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Sounds like he is making great progress toward healing. He sounds like he is in clinical remission (the absence of symptoms). He also may have normalized his biomarkers. However, the goal is usually deep, mucosal remission and this can only be identified with scopes and biopsies and most docs won't do that until a year or so after the kids respond to meds. Until that time, symptom free, normal biomarkers, weight gain and growth are very good indicators.
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Vit d 2000IU
Multi vitamin plus iron
Calcium

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Remicade
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
01-02-2018, 02:25 PM   #6
pathfnd1
 
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[QUOTE=my little penguin;997512]No he is not in remission but may be getting close
The enteral feeds reduce the inflammation

But once solid food is added back the inflammation will return unless another med is started
Since he started remicade
Remicade will take care of the inflammation from now on
So your grandson should be better even though the ng is out

Good luck

Thanks little penguin. That helps.
01-02-2018, 02:27 PM   #7
pathfnd1
 
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Generally, exclusive enteral nutrition (EEN - formula only) is used to induce remission and a medication like Remicade is used to maintain it. Usually, formula is reduced and food is added back slowly. It sounds like that is what your GI is doing since he is keeping your grandson on some formula (two shakes) and is adding solid food back. I would stick with bland food at first to see what he tolerates.

How is he doing in terms of symptoms? Remicade can take more than 8 weeks to work, so if he still has some symptoms don't lose hope. They can also add medications like MTX to "boost" Remicade, or they can increase the dose or frequency of Remicade, if needed.
Maya Thanks. He is still having some pain off and on but is relieved to have the ng tube out, of course, and he seems to have more energy now than over the last several months. I hope that he does stick with bland food for awhile. He is such a picky eater - he loves pepperoni pizza, but that's not bland. :-(
01-02-2018, 02:31 PM   #8
pathfnd1
 
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Hi and welcome to the forum. I'm just across the river from you. My daughter's experience was similar to your grandson's: hospitalization, Remicade, and ng-tube. She's been doing well on Remicade and methotrexate for 3 years now. As Maya mentioned above, though, it can take a while for Remicade to work. In my daughter's case, it took almost 6 months, and her doctor did need to increase the dose and frequency a few times. She also ended up doing supplementary ng-tube feeding at night for a few more months until the Remicade really kicked in.

Good luck--hope your grandson's treatment works well for him.
pdx. thanks. I know my grandson vomited at least once when he first came home from the hospital and I think they were increasing his remicade, maybe to find the sweet spot for him. I don't think he's done that again, although I am really not sure. I guess we'll see before too long how he does. I so hope he does not start losing weight again.
01-02-2018, 02:33 PM   #9
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Sounds like he is making great progress toward healing. He sounds like he is in clinical remission (the absence of symptoms). He also may have normalized his biomarkers. However, the goal is usually deep, mucosal remission and this can only be identified with scopes and biopsies and most docs won't do that until a year or so after the kids respond to meds. Until that time, symptom free, normal biomarkers, weight gain and growth are very good indicators.
crohnsinct thanks. Yes, I can see waiting to see how he does before another scope and biopsy. What are biomarkers? I have seen weight gain, but not growth upward, anyway. He is very short.
01-02-2018, 02:39 PM   #10
my little penguin
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Weight gain happens first
Then 6 months to a year later growth
A lot of kids have catch up growth
Biomarkers are esr Crp bloodwork etc..
01-02-2018, 02:41 PM   #11
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Weight gain happens first
Then 6 months to a year later growth
A lot of kids have catch up growth
Biomarkers are esr Crp bloodwork etc..
Okay. Can't wait for 6 months! Hopefully 5th grade next fall will be good for him.
01-02-2018, 06:11 PM   #12
Maya142
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Maya Thanks. He is still having some pain off and on but is relieved to have the ng tube out, of course, and he seems to have more energy now than over the last several months. I hope that he does stick with bland food for awhile. He is such a picky eater - he loves pepperoni pizza, but that's not bland. :-(
I'm sure it will take some time. It doesn't sound like he's in remission yet, but he will get there.

The first year tends to be the hardest because there is a huge learning curve for us parents (and grandparents) and the kiddo does not feel good because you're trying to find the combination of meds that works for him. But once you find that "magic" combination and it has time to work, things will settle down and you will find a new normal.
01-02-2018, 06:24 PM   #13
crohnsinct
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Patience is key with this game. Flexibility would be next.

My first daughter was put on Remicade right away and it took us about 6 months to get normal biomarkers (sed rate, CRP, HGB, hematocrit and fecal calprotectin etc). It took her almost a year to start growing. Lots of changing Remicade dosage and frequency during that time. Remicade is a very flexible drug so able to change things up quite a bit.

My second daughter was treated for a year and didn't achieve remission. At that point they put her on Remicade and she took off.
01-02-2018, 06:30 PM   #14
pathfnd1
 
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I'm sure it will take some time. It doesn't sound like he's in remission yet, but he will get there.

The first year tends to be the hardest because there is a huge learning curve for us parents (and grandparents) and the kiddo does not feel good because you're trying to find the combination of meds that works for him. But once you find that "magic" combination and it has time to work, things will settle down and you will find a new normal.
Ok.May I asked your timeline for getting your child diagnosed with this? My grandson had pain, vomiting, and diarrhea, intermittently for 3 or 4 months before going to a doctor outside of Urgent Care. I didn't know this.
01-02-2018, 06:34 PM   #15
pathfnd1
 
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Patience is key with this game. Flexibility would be next.

My first daughter was put on Remicade right away and it took us about 6 months to get normal biomarkers (sed rate, CRP, HGB, hematocrit and fecal calprotectin etc). It took her almost a year to start growing. Lots of changing Remicade dosage and frequency during that time. Remicade is a very flexible drug so able to change things up quite a bit.

My second daughter was treated for a year and didn't achieve remission. At that point they put her on Remicade and she took off.
Yes, my grandson was put on Remicade right away. I think that was because his intestine was so bad (and he first showed up with a bad abscess) that they just went ahead and started it. I hope the ng removal was not too soon. I guess we will just have to wait and see. Thanks
01-02-2018, 06:48 PM   #16
crohnsinct
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Unfortunately, diagnosis for most kids takes a real long time. At the beginning the disease could be somewhat silent or present with symptoms that mimic a multitude of other things. My first daughter just slowed with growth, then stopped gaining weight and consistently had low iron. Not much more beyond that. This went on for two years. Her first flare lasted two weeks at dx and was so severe her colon was chop meat and she ended up in ICU with a PICC line, blood transfusions etc.

3-4 months is a pretty fast dx but I would think he was sick long before that but disease was just not so obvious.
01-02-2018, 06:54 PM   #17
Maya142
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My daughter was probably sick for quite a while before she was diagnosed. It took us years of little things - belly pain on and off, nausea - before we scoped her. When we finally decided to scope, she had been complaining of daily belly pain for 3-4 months. We had seen a gynecologist (she was 16) to rule out an ovarian cyst. She had also lost some weight and had constipation on and off. We were pretty sure it was not Crohn's but figured we would scope to finally rule it out.

Scopes showed ulcers in her colon and inflammation in her terminal ileum (end of her small bowel). Biopsies showed both acute and chronic inflammation and granulomas, which led to the Crohn's diagnosis. We were shocked.
01-02-2018, 06:58 PM   #18
my little penguin
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^^^ yeah that
Ds stopped gaining weight at age 5
Wasn’t dx till age 7 as it progressed slowly
And bloodwork looked normal
3-4 months is fast
01-02-2018, 07:07 PM   #19
pathfnd1
 
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Unfortunately, diagnosis for most kids takes a real long time. At the beginning the disease could be somewhat silent or present with symptoms that mimic a multitude of other things. My first daughter just slowed with growth, then stopped gaining weight and consistently had low iron. Not much more beyond that. This went on for two years. Her first flare lasted two weeks at dx and was so severe her colon was chop meat and she ended up in ICU with a PICC line, blood transfusions etc.

3-4 months is a pretty fast dx but I would think he was sick long before that but disease was just not so obvious.
Yes, I think he was sick before that, too. I remember how his stomach ached when I gave him apple juice out of the refrigerator. I always wondered about that. And I think I remember his having problems with getting to the bathroom in time at a neighbor's when he was younger. (I live nearby)He has always been tiny and underweight, has not ever eaten much.
Poor babies...If ony I could take it for him.
01-02-2018, 07:13 PM   #20
pathfnd1
 
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My daughter was probably sick for quite a while before she was diagnosed. It took us years of little things - belly pain on and off, nausea - before we scoped her. When we finally decided to scope, she had been complaining of daily belly pain for 3-4 months. We had seen a gynecologist (she was 16) to rule out an ovarian cyst. She had also lost some weight and had constipation on and off. We were pretty sure it was not Crohn's but figured we would scope to finally rule it out.

Scopes showed ulcers in her colon and inflammation in her terminal ileum (end of her small bowel). Biopsies showed both acute and chronic inflammation and granulomas, which led to the Crohn's diagnosis. We were shocked.
Yes, that would be shocking. It's a shame that Crohn's is not easier or quicker to diagnose. I wish we lived near one of the major children's Crohn's centers, like in Boston or such. But at least we are in a city with pediatric gastroenterologists.
01-02-2018, 07:14 PM   #21
pathfnd1
 
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^^^ yeah that
Ds stopped gaining weight at age 5
Wasn’t dx till age 7 as it progressed slowly
And bloodwork looked normal
3-4 months is fast
Poor babies...
01-02-2018, 07:19 PM   #22
Maya142
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You can always get a second opinion from one of the big centers - I think Boston Children's will do a record review, so you don't even have to travel there - just send all his records. There are some parents on here who have done that.

The three big pediatric IBD centers are Boston Children's, Cincinnati Children's and Children's Hospital of Philadelphia.

Seattle Children's (I know it would be several hours away) also has a good IBD program I believe.
01-02-2018, 07:32 PM   #23
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You can always get a second opinion from one of the big centers - I think Boston Children's will do a record review, so you don't even have to travel there - just send all his records. There are some parents on here who have done that.

The three big pediatric IBD centers are Boston Children's, Cincinnati Children's and Children's Hospital of Philadelphia.

Seattle Children's (I know it would be several hours away) also has a good IBD program I believe.
Yes. I would drive to Seattle in a minute. It's a couple hours. Not that I have any reason to think that is needed. He seems to be doing fairly well right now. I think he has a good doc, too. At least he's got a doctor other than the one at the stupid Urgent Care he's been going to for the past few years. 😢 A nurse or doctor scared his parents years ago since his weight was so low. She/he told them possible failure to thrive and that they needed to get him eating and gaining weight or CPS might have to get involved. My daughter came crying to me. Unfortunately, since then, I think they were too scared to take him to any pediatricians again after that experience. I didn't know this. Then much later I found out they had only been taking their kids (3) to Urgent Cares since then, out of fear, I guess.
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