03-15-2018, 11:14 AM   #1
Carolina*
Senior Member
 
Join Date: Oct 2017
Location: North Carolina
Happy News!

I like to come back and post as I think it is helpful for new people to the site. I know anything can change at any moment, but celebrating the good when I can.

Refresher is that 11yo was diagnosed with Indeterminate Colitis/Celiac this past October. At diagnosis her Fecal Calpro was 178, in December it was 68, and the results just loaded on the portal...it is 19! Her lab has normal of 0-50. She was 65lbs at diagnois and weighed 74lbs yesterday! She is currently taking Lialda and a GF diet for the Celiac along with 2 Boost Plus (360 calories each) shakes a day. She had a bunch of blood tests done too but those are not back yet.

I have been stressed out about some knee pain she is having. I plan to talk to the Doctor about that at our upcoming appointment. I have no idea if it is IBD related, normal kid issue or dance causing.

Anyway, thank you all for your continued support, this site has been invaluable to me.
03-15-2018, 12:46 PM   #2
pdx
Senior Member
 
Join Date: Dec 2014
Location: Portland, Oregon

My Support Groups:
Great news--both the calprotectin results and the weight gain!
__________________
Daughter E (16) 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
03-15-2018, 03:22 PM   #3
Maya142
Forum Monitor
 
Maya142's Avatar
Congratulations!

As for knee pain - is it just pain or are you seeing swelling? Any stiffness?

There are LOT of knee issues that dancers/athletes, especially teen girls, can have. I would probably start with an orthopedist to see if they can figure out what is wrong.

Alternatively, you could start with a pediatric rheumatologist. Red flags for arthritis are morning stiffness, pain that gets better with movement and worse with rest and warm, red or swollen joints.

If she has any of those issues, then I'd go to a rheumatologist first.
__________________
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
03-15-2018, 03:31 PM   #4
Carolina*
Senior Member
 
Join Date: Oct 2017
Location: North Carolina
Congratulations!

As for knee pain - is it just pain or are you seeing swelling? Any stiffness?

There are LOT of knee issues that dancers/athletes, especially teen girls, can have. I would probably start with an orthopedist to see if they can figure out what is wrong.

Alternatively, you could start with a pediatric rheumatologist. Red flags for arthritis are morning stiffness, pain that gets better with movement and worse with rest and warm, red or swollen joints.

If she has any of those issues, then I'd go to a rheumatologist first.
She is terrible at describing which isn't helping. There is no redness, warmth or swelling. I asked about morning stiffness and she said no. She took a bath last night after dance and she said it didn't help. She had to stand a lot today doing a school presentation and it was bothering her then as well as sitting in class. She said it got slightly worse after dance yesterday. She's been mentioning it off and on for the last month or so. I've even read the Lialda can cause joint pain, so hard to know when it could be easily attributed to many things. Appreciate your insight, I was trying to decide if it fit the arthritis mold. In the back of my mind I had been worrying it was a sign of inflammation in the colon so it is nice to have a good FCP result.
03-15-2018, 03:43 PM   #5
Maya142
Forum Monitor
 
Maya142's Avatar
Both my kiddos have arthritis and started out with knee pain. But in they both has swollen knees, that were warm. For both girls (yes, both, you would think we would have learned after the first one ) we went to an orthopedist first, thinking it was an injury since they both played soccer and were very active.

He talked about many knee issues that teen and pre-teen girls get but did MRIs on both.

Both MRIs showed a lot of inflammation and fluid and no cause for it. In my older daughter's case, by the time we got to the rheumatologist, she also had very swollen ankles.

With my younger daughter we were sent immediately to the same ped. rheumatologist and seen the same day we got MRI results back.

Nothing you say screams arthritis to me, which is why I'd probably go to the orthopedist first. Chances are, he will need to do an MRI anyway and that will probably give you some answers.
03-15-2018, 04:56 PM   #6
crohnsinct
Senior Member
 
Join Date: Mar 2012
Location: California

My Support Groups:
Great to hear the good ibd news!!!

Ex dancer and mom to athletic girls here. If you live near a major city try to find an orthopedist who specialises in dancers or at the least athletes. There is a psoas tendon injury popular with dancers that will present with knee pain.
03-15-2018, 05:17 PM   #7
Maya142
Forum Monitor
 
Maya142's Avatar
^Good idea - a sports medicine doctor may be the one to see. Most big children's hospitals have them.
03-21-2018, 08:03 PM   #8
Carolina*
Senior Member
 
Join Date: Oct 2017
Location: North Carolina
So Iíve gotten all the blood work back now, her CRP and sed rate were great. She has slightly low vitamin D, high lymphs (?) for the first time and a little high on b12. Now Iím wondering about SIBO, itís the only thing that might make sense when I look up possible causes of raised b12. Anyone dealt with raised levels like these?

Celiac panel was trending downward nicely. The weak positives are now negative and the one that a value over 100 is now 33, I suspect this is all fine for 5 months into the diet.

Adding in one more strange fact, sheís had really strange breath for awhile now. I was looking for tonsil stones or something, can SIBO cause that? I wish I could think of a way to describe it, itís almost sweet smelling but really revolting smelling too if that makes any sense at all. Haha

Last edited by Carolina*; 03-21-2018 at 08:19 PM.
03-21-2018, 10:22 PM   #9
crohnsinct
Senior Member
 
Join Date: Mar 2012
Location: California

My Support Groups:
One of my daughters always has high b12 it has never been a concern. Low b12 yes but never high.

Why are you concerned about SIBO? Is she experiencing symptoms? Symptoms of SIBO are similar to Celiac and IBD and IBS so hard to flesh out but if you are super concerned it is a simple breath test in the office.

Sorry not sure on the breath...I wonder if it has something to do with cutting out gluten and her body adjusting to the change in diet.?
03-21-2018, 10:51 PM   #10
Lynda Lynda
Senior Member
 
Lynda Lynda's Avatar
 
Join Date: Feb 2018
Location: Arizona

My Support Groups:
Carolina, thank you for sharing with us
03-22-2018, 07:08 AM   #11
Carolina*
Senior Member
 
Join Date: Oct 2017
Location: North Carolina
One of my daughters always has high b12 it has never been a concern. Low b12 yes but never high.

Why are you concerned about SIBO? Is she experiencing symptoms? Symptoms of SIBO are similar to Celiac and IBD and IBS so hard to flesh out but if you are super concerned it is a simple breath test in the office.

Sorry not sure on the breath...I wonder if it has something to do with cutting out gluten and her body adjusting to the change in diet.?

I don't know why I am concerned about SIBO, I think I am going down the rabbit hole having the info at my disposal prior to our appointment next Tuesday. The nurse did say on the phone that slightly raised B12 is fine, I have to get B12 shots so I was surprised to see it high. I just googled possible causes of raised B12 and then it got me pondering her strange breath and the connection with Celiac/Crohn's. Her GI symptoms have been fine. I would say she is gassy (maybe normal amount), weird breath, some occasional knee pain, and some mucus in stool (sure wish I knew what amount was normal was on that). I am not too concerned about mucus given her FCP and bloodwork was fine.

I had initially wondered if it was the Boost shakes causing the breath issues. I know tonsil stones supposedly smell vile, so still need to get her into a dentist to see. She gags too much for me to get a good look and has a tiny mouth.
03-22-2018, 02:28 PM   #12
crohnsinct
Senior Member
 
Join Date: Mar 2012
Location: California

My Support Groups:
I think I am going down the rabbit hole
HA! We have all been there done that! I for one have to constantly check myself and know when to file things under "good to know" and "red alert". Sometimes I even step away for a bit.

Mucus is tricky. It is A) normal at some amount (good luck getting an actual measurement B) a sign of inflammation C) a sign of IBS and SIBO and D) a sign of healing intestines. Like you said cal pro is good so I would just note and watch for an increase along with increase of other symptoms.
03-22-2018, 02:49 PM   #13
Carolina*
Senior Member
 
Join Date: Oct 2017
Location: North Carolina
HA! We have all been there done that! I for one have to constantly check myself and know when to file things under "good to know" and "red alert". Sometimes I even step away for a bit.

Mucus is tricky. It is A) normal at some amount (good luck getting an actual measurement B) a sign of inflammation C) a sign of IBS and SIBO and D) a sign of healing intestines. Like you said cal pro is good so I would just note and watch for an increase along with increase of other symptoms.
Iím just cracking up, the mucus is a great example of the insanity of IBD life. It could either be normal, code red, a sign of something else or good. Haha, itís a wonder we are all sane.

Last edited by Carolina*; 03-23-2018 at 06:18 AM.
03-22-2018, 04:03 PM   #14
Lynda Lynda
Senior Member
 
Lynda Lynda's Avatar
 
Join Date: Feb 2018
Location: Arizona

My Support Groups:
My sister hates "poop" talk. I have been sick for 20 years and my UC effects every day of my life. But I HAVE to monitor my symptoms, which means keeping track of color, size, texture, smell and frequency of my bowel movements ! My doctor needs to know that information. I don't recall having mucus. Take Care. Why is there a sheep jumping rope ?
03-22-2018, 04:10 PM   #15
crohnsinct
Senior Member
 
Join Date: Mar 2012
Location: California

My Support Groups:
Both of you are cracking me up! Thanks for the laugh. It has been a medically depressing day around here!
03-22-2018, 05:08 PM   #16
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
If she is formula only regardless of the formula
She will have very bad breath
No brushing /mouth etcwill fix it
Formula plus food breath should be better but brushing after formula and using a goodouthwash is necessary especially if itís wemi elemental or elemental

Vary common in our house when any of the kids leave the bathroom
ďHey was there any blood or mucus ?... ď
and later what Bristol number
Thus is even with the non ibd kiddo
__________________
DS - -Crohn's -Stelara -mtx
03-22-2018, 05:26 PM   #17
crohnsinct
Senior Member
 
Join Date: Mar 2012
Location: California

My Support Groups:
HEY! Ya know you are an IBD mom when you go into a portal potty and happen to glance down and see a deposit and think, "that person should see a GI about that" Oh Yes I did!
03-22-2018, 06:55 PM   #18
Carolina*
Senior Member
 
Join Date: Oct 2017
Location: North Carolina
If she is formula only regardless of the formula
She will have very bad breath
No brushing /mouth etcwill fix it
Formula plus food breath should be better but brushing after formula and using a goodouthwash is necessary especially if itís wemi elemental or elemental

Vary common in our house when any of the kids leave the bathroom
ďHey was there any blood or mucus ?... ď
and later what Bristol number
Thus is even with the non ibd kiddo
Yes, the boost shakes are definitely more plausible than SIBO. Iím going to do her testing 1 week prior next time, 2 weeks was too much idle time for me to make myself extra nuts.
Reply

Thread Tools


All times are GMT -5. The time now is 12:45 PM.
Copyright 2006-2017 Crohnsforum.com