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01-28-2015, 03:35 PM   #1
CarolinAlaska
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Jae's update and sibling issues

Well, Jae did pretty well since moving to Illinois in August. The first part of the transition was difficult with a new school and no mom around for 3 months. She was really stressed, but she was gaining weight and grew a few inches, so I felt overall she must be doing well. However, over the past 3 weeks or so, she's been having blood when she wipes and has some sores on her anus, just inside. It hurts to poo . Her appetite is decreased and she has abdominal pain every morning . She is thinking that she is flaring. We have an appt with her GI tomorrow afternoon.

DD#2 (age 10) has been having abdominal pain 3-4 times over the past week, and has had to stay home from school because of it twice. The other two times I made her go anyway. She says her stools are normal although she had diarrhea on the first day. She is overweight (has been all her life, but this last year she gained in extreme. She is gluten intolerant like Jae and I am, and has had issues with abdominal pain all her life, and has always been gassy. I took her off dairy a week ago, but hasn't made any difference. I'm thinking that soon I'll have to bring her to see the doc about her chronic abdominal pain issues. Anyone with kids who presented with IBD like this? What tests should I ask for first?
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J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), taking pred only. NG feedings nightly.
Osteoporosis/osteopenia, Scoliosis, EDS, Asthma, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety, postural tachycardia/POTS and multiple food allergies.
01-28-2015, 03:56 PM   #2
crohnsinct
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T has always been on the larger size for her age and that is one of he reasons why everyone ruled out IBD for her. Couldn't be Crohn's she was growing! Abdo pain every since she could speak. Not enough to make her stay home but enough to mention it. Normal bm's...well according to everyone else...that is if you consider once every 3-4 days normal..which I was told by the GI it was.

Jan 14 she had a pretty severe time of it. Took her to doc he agreed to run blood tess for celiac, sed rate, crp etc. I asked for Fecal calprotectin. Bloods all returned normal so doc cancelled fc test.

Fast forward a year and no weight gain but we are figuring she is done growing so not freaking. Ped says go to GI just in case. GI says she doesn't have Crohn's let's do an FC to put this thing to bed. Elevated numbers twice. Scopes in January and the kid has Crohn's.

My point? There are many atypical presentations on this forum. There are also many who don't show inflammation in blood tests. Some (but fewer) don't show in FC. I would request bloods and an FC test to start and take it from there.

Could it be possible she was inadvertently glutened? For as many Celiacs out there who are underweight there are just as many who are overweight. Has she had a Celiac panel run?
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01-28-2015, 04:07 PM   #3
CarolinAlaska
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She has not had gluten, but traces don't usually bother us. We're not celiac. Can you have Crohn's and be overweight?
01-28-2015, 04:37 PM   #4
Sascot
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Sorry to hear Jae is flaring. It's so hard to tell what to do with siblings. A faecal calprotectin is always a great start and no needles involved.
01-28-2015, 04:38 PM   #5
Maya142
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My daughter was not at all overweight but had the same sort of chronic abdominal pain that you describe - bad enough that she occasionally missed school from it, but not terrible. Stools were normal, besides occasional constipation (which we put down to not eating enough fiber).
IBD can be sneaky - I have seen members of the adult forum who say they are overweight and have IBD. I also know of one teenage girl who goes to our infusion center who has ulcerative colitis and is overweight.
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01-28-2015, 05:46 PM   #6
crohnsinct
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I certainly wouldn't rule out IBD on the basis of weight and like Maya have read of adults who were heavier who have Crohn's.

If she has gluten sensitivity she could have progressed to Celiac.

I would start with the FC and if that comes back as no inflammation maybe do some blood tests and take it from there.

Beyond that there are a host of other things it could be. Abdominal pain is the number one reason people go to see a doc. It is also the most frustrating to try to figure out Ours was a seven year journey to here.
01-28-2015, 06:30 PM   #7
my little penguin
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^^^^ yeah that
Dealing abdominal pain yet again ....
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01-28-2015, 07:15 PM   #8
Jmrogers4
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Sounds like a crazy few months for you all. Yes definitely heard about overweight and CD. But wouldn't rule out celiac either. Have to agree with the panel FC and blood tests to start
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01-29-2015, 11:54 PM   #9
kimmidwife
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I was just thinking of you guys and wondering how you were doing. Sorry to hear about both your daughters. We had some issues with our other two daughters as well and are currently watching them and getting fecal calp. every six months.
Hope you figure things out. Where in Illionois are you? We used to live in St. Louis and I was stationed at Scott Air Force base in southern Illionois.
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01-30-2015, 07:28 AM   #10
DustyKat
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So sorry to hear about Jae, Carol. Good luck with the appointment today!

I agree with what has been suggested hun. Since you have reached the point of tossing IBD around then I think you need to proceed with consultation and testing so you can move forward either way.

As to weight? It isnít uncommon to not have weight loss as a symptom. It fits in the realm of you canít have IBD because... you donít have blood, you donít have diarrhoea, you are overweight. Wish I had a dollar for every person that doesnít present as the Ďtypicalí IBD sufferer!

Dusty. xxx
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01-30-2015, 03:44 PM   #11
CarolinAlaska
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Thanks everyone. Kim, we are in north central Illinois . About an hour north of Peoria.

Jaedyn had her appointment yesterday. Not sure I like her new doctor. He said her labs were good. Her 6-MP metabolites were all normal. Her lactoferrin was negative. He said based on that he thought she was doing fine. He did put her on folic acid because her folic acid was low, which never has been low before. We can't help but be frustrated. I had just got done saying that she was having bleeding (that she's never had before), no appetite, abdominal pain and diarrhea off and on. He said her weight was in the 10th percentile, which it appeared to me to be barely on the chart. I asked about her BMI %ile, and he told me it was 14.1. But when I got the take-home form it said her BMI was zero percentile (weight 96 lbs, almost 5'8" - height is 94%ile. He was happy when pushed to schedule an EGD and colonoscopy which he will do on Tuesday. He listened briefly to her breathing and felt her tummy, but has never even asked to look at her anus, even after we told him she had been bleeding when she wiped. I can't help but hope that her scopes show something so we can have some kind of change. Unfortunately her original colonoscopy and EGD did not show much . It was the videocam that really showed her Crohn's in her small bowel.

Thanks for reading!

Last edited by CarolinAlaska; 01-31-2015 at 01:29 PM.
01-30-2015, 04:05 PM   #12
crohnsinct
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Oh no! I am so sorry it didn't go better. Her weight is 10th percentile because of her height!!!! They have to look at weight for height! There is no way a 14.1 BMI is o.k.!

But glad you have the scopes planned and glad they are quick. Did you happen to tell him that scopes didn't show disease activity? Maybe he is just waiting until he does them to decide to do further imaging.

UGH! Don't we all know too well the feeling of not wanting there to be something but wanting there to be something.
01-30-2015, 04:20 PM   #13
Sascot
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Very frustrating! Hope the scopes go okay and show something.
01-30-2015, 05:55 PM   #14
kimmidwife
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If you guys are in a small town then that may be an issue. A lOt of these small town older docs are just not up to date on the latest literature. Maybe think of taking her to Chicago? I have heard there are some excellent IBD docs there.
A BMI of 14% is absolutely not acceptable. 18 and under is considered abnormal.
01-30-2015, 06:54 PM   #15
my little penguin
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Not under standing not checking for blood in the office
That is pretty much a given
Also our std is imaging scopes then pill can if needed
Since blood is always normŗl
Second the getting to a major Ped teaching hospital that has an Ibd clinic .
Even then it's hard if your kiddo flares outside the box
01-30-2015, 06:57 PM   #16
Maya142
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A 14.1 BMI is very low. M's was around 16 and her GI was very concerned and insisted on starting overnight feeds via an NG tube.
If this GI doesn't start being more helpful, I would look for a different one if possible. I hope scopes provide useful information
01-30-2015, 08:24 PM   #17
DanceMom
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A's BMI is 14.8. We should be aiming for 18?? She has nice muscular legs and abs, but looks thin and sickly overall.

5'8 and under 100 lbs seems extremely thin to me. I remember that you don't want to do any tube feedings so what other options ate you considering to help with weight gain?
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01-31-2015, 12:47 AM   #18
DustyKat
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I am so sorry to hear that you didnít walk away the consult feeling confident in the doc, that sucks.

I agree with all that said above regarding your lassís BMI.

Good luck with the scopes and I hope he schedules small bowel imaging to compliment them!

Dusty. xxx
01-31-2015, 09:15 AM   #19
crohnsinct
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A's BMI is 14.8. We should be aiming for 18??
Yes in general you should be. GI's like the kids to be a little higher even to account for weight loss during difficult times. I am sure you will be discussing her BMI at her appointment next week

Carol: maybe upping the shake intake would be good but I fear there is inflammation that is the root cause and not until that gets dealt with will she really start absorbing her nutrients and gaining.
01-31-2015, 01:45 PM   #20
CarolinAlaska
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5'8 and under 100 lbs seems extremely thin to me. I remember that you don't want to do any tube feedings so what other options ate you considering to help with weight gain?
I guess we aren't totally ruling out tube feedings - just not G-tube yet. I brought up reinserting the ng tube after the scope while she was under. He didn't engage the idea as an option. J isn't thrilled about it either. My other thought is changing to Remicade. Just because 6MP helped bring down her FC numbers and helped with abdominal pain doesn't mean that it is controlling her Crohn's, does it? I'm also considering throwing out all the sugary fake nutritional drinks for a Whole 30 challenge to see if the diet changes will help her get over this final hump nutritionally. This is not being done lightly, but something has to give and if it can be done with good healthy food, I'm willing to give it another try...
01-31-2015, 02:05 PM   #21
Maya142
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How old is J? My daughter was 17 and very VERY against the idea of inserting an NG tube every night, but her GI insisted she needed one and M didn't want to have one in all the time, so she agreed to learn how to insert it herself. She was able to learn how to do it fairly easily. The first night was rough (she was very uncomfortable) but after that, I was surprised at how quickly she got good at it. She now thinks using an NG tube is WAY easier than drinking Peptamen.

When we were at the hospital (M spent three days in the hospital because her GI was worried about her low weight and refeeding syndrome) her psychologist was very helpful and so was ChildLife.

I hope J starts feeling better soon
01-31-2015, 02:12 PM   #22
CarolinAlaska
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Maya, she has tried several times to self-insert, but hasn't ever been successful.
01-31-2015, 02:20 PM   #23
crohnsinct
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Carol: You are right. Just because her more obvious symptoms are gone does not necessarily mean the inflammation is totally under control

You won't get a fight from me on the move to Remicade or a change in diet.

Poor Jae has been going through so much! The stress of the move coupled with not feeling well. You know your girl best, but my girls would push back on the diet in her scenario. You know I am a HUGE fan of food as medicine but maybe go slow. Work with her to pick one thing to delete and one thing to include a week.

Like I said before, I think inflammation may be playing a starring role hear. Once you get that under control I think you will have a clearer picture of where else you can improve.

In the meanwhile just try to keep those calories and shakes up.

P.S.: if you want some good food documentaries to watch pm me and I will send you a list. Watching a few of those is what got my family bought in. When mom speaks all they here is "blah blah blah" But when they watch the movies and see doc after doc and patient after patient talk and when it is on the "screen" it is suddenly magical.
01-31-2015, 03:46 PM   #24
Maya142
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Poor Jae I hope her GI can figure something out so she feels better soon. Remicade works like magic for so many kids, maybe it would do the trick for her

Regarding the tube, did it have a stylet (wire) in when she tried to insert it? It's much easier with one, M could not do it without one. Also, we used a really small one, 6Fr, which is used on babies.
01-31-2015, 06:15 PM   #25
my little penguin
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Hugs if I remember correctly they place she tried at the hospital didn't have infant tubes 6fr...?
If that's the case smaller is better

DS finally did well on remicade
Gained weight etc....
Even tough his blood looked ok
He loved remicade
6-mp just wasn't enough
Good luck in the scopes
01-31-2015, 07:26 PM   #26
CarolinAlaska
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Carol: You are right. Just because her more obvious symptoms are gone does not necessarily mean the inflammation is totally under control

You won't get a fight from me on the move to Remicade or a change in diet.

Poor Jae has been going through so much! The stress of the move coupled with not feeling well. You know your girl best, but my girls would push back on the diet in her scenario. You know I am a HUGE fan of food as medicine but maybe go slow. Work with her to pick one thing to delete and one thing to include a week.

Like I said before, I think inflammation may be playing a starring role hear. Once you get that under control I think you will have a clearer picture of where else you can improve.

In the meanwhile just try to keep those calories and shakes up.

P.S.: if you want some good food documentaries to watch pm me and I will send you a list. Watching a few of those is what got my family bought in. When mom speaks all they here is "blah blah blah" But when they watch the movies and see doc after doc and patient after patient talk and when it is on the "screen" it is suddenly magical.
Yes, I'd love to see the list. Sorry, but I think the sugary drinks have to go...
01-31-2015, 07:28 PM   #27
CarolinAlaska
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Poor Jae I hope her GI can figure something out so she feels better soon. Remicade works like magic for so many kids, maybe it would do the trick for her

Regarding the tube, did it have a stylet (wire) in when she tried to insert it? It's much easier with one, M could not do it without one. Also, we used a really small one, 6Fr, which is used on babies.
I don't know if she kept the wire in, but it is a 6fr
01-31-2015, 07:34 PM   #28
CarolinAlaska
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Hugs if I remember correctly they place she tried at the hospital didn't have infant tubes 6fr...?
If that's the case smaller is better

DS finally did well on remicade
Gained weight etc....
Even tough his blood looked ok
He loved remicade
6-mp just wasn't enough
Good luck in the scopes
The first one they tried was bigger and weighted. Then when they did it later it was smaller. The practice one she has now is 6 fr but it doesn't have a guide wire.
01-31-2015, 07:34 PM   #29
Maya142
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It's much easier it insert if you insert it with the wire in. Once it's in place, you pull the wire out and it's much more comfortable. Without the wire, M found it really really hard to insert because it's so thin and flexible, sort of like spaghetti.
01-31-2015, 07:38 PM   #30
CarolinAlaska
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So, I've talked myself out of doing the scopes this week. Here is why. I think we're going to switch doctors, and I think it would be better to have the new doctor do the scopes rather than she having to take someone else's opinion. I'm going to talk with her Alaska doctor on Monday to see what she recommends.
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