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06-30-2015, 11:55 AM   #301
Clash
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I'm not gonna lie, guys I did a lil dance after reading it! Isn't it crazy what a parent of an IBD kid considers victory dance worthy!

C is doing great right now. The whole hot flash thing passed quickly and I really think it may have been just a fluke thing. So still no symptoms, working and playing the summer away! I've seen my oldest who is away at college on the weeekends more than C! In fact me, the hubby and J have an upcoming shopping trip to expand her wardrobe for her upcoming cohort/student teaching. Yes, she thinks she has gdied and gone to heaven with a shopping trip all about her!
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Clash
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
07-01-2015, 10:16 PM   #302
Tesscorm
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I can imagine my daughter would love the thought of a shopping trip all about her! But, I'm sure you'll have almost as much fun!

And, so glad all is going well with C!!!!
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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
07-02-2015, 01:21 AM   #303
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That's great things are going well. Happy shopping, bet she'll have a ball.
07-06-2015, 04:41 PM   #304
kimmidwife
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Always glad to hear good news! Enjoy the shopping!
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
07-16-2015, 09:59 PM   #305
Clash
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C hado his rheumatologist appt today and things went well. She felt some inflammation in his 2nd and 3rd fingers on his right hand. But his range of motion was good in all joints. He hasn't had any joint pain since last appt so she felt the humira was starting to do its thing. She said the timing was good because we were coming up on the 6 mos mark and that was when she generally saw humira really kick in.

I took some time to ask about the imaging he had done first visit that the nurse called and said was good. When the doc was telling me about them she mentioned something at the SI joints but other joints looked good. I swear it sounded like she said sutures at the SI joints but I know that can't be the word. She also said it was slight. This was on the x-rays not the MRI. Any ideas?

I should've questioned it but C spoke up right then with his own question and it took us down a different tangent. I didn't even think of it again until we were otw home.
07-16-2015, 10:07 PM   #306
Maya142
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Sclerosis? That's the only word I can think of with S for the SI joints. There could also be subchondral erosions (that's sort of a S).

Can you get a copy of the x-rays and the MRI reports? It's probably a good idea to have them for your record, in case C ever sees another rheumatologist etc.

This is the grading scale:
Sacroiliitis grading can be achieved using plain films according to the New York criteria 4.

grade 0: normal
grade I: some blurring of the joint margins - suspicious
grade II: minimal sclerosis with some erosion
grade III:
definite sclerosis on both sides of joint 5
severe erosions with widening of joint space with or without ankylosis
grade IV: complete ankylosis
I believe you either need unilateral grade 3 or 4 or bilateral grade 2 sacroilitis for a diagnosis of AS. Both my girls have bilateral grade 3 (I only know this because they're in a research study) and my husband has bilateral grade 4 sacroilitis.

Glad C is not in pain and is doing well!!
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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
07-16-2015, 10:11 PM   #307
Maya142
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This site might help Clash: http://radiopaedia.org/articles/ankylosing-spondylitis
07-17-2015, 07:44 AM   #308
Tesscorm
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No idea on the S word... but really glad all went well and that humira is doing its job!!
07-17-2015, 07:56 AM   #309
Clash
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Wow I just posted a long post and it disappeared!

Neither of those words but thanks so much for the link its a wealth of info!

Yeah it was a good visit overall and we really like this doc!
07-17-2015, 10:07 AM   #310
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Glad to hear!!! And it is always good when you find a good doctor!!!
07-17-2015, 10:14 AM   #311
Clash
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I forgot to mention that the letter issue must've been a misunderstanding because when I brought it up to her she was extremely helpful and asked a lot of questions and then had the nurse to call me today to get the letter out and what points it should make.

She'll be calling back this afternoon and I'll ask her about the SI joints. And records but I assumed at least the reports would be available letting by the portal?
07-17-2015, 10:16 AM   #312
kimmidwife
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Clash,
I find not everything is always available on these portals so probably good to get a hard copy.
07-17-2015, 10:24 AM   #313
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Okay, I'm going to ask this afternoon. Thanks!
07-17-2015, 10:34 AM   #314
CrohnsKidMom
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Scoliosis? But I'm not sure if one can have scoliosis of the SI joint...
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07-17-2015, 10:46 AM   #315
Clash
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No it sounded like sutures. In fact, that is what C heard too as otw home he asked what she was talking about with sutures in the SI joint and could it have been his stitches from the resection. LOL Who knows but I'll ask this afternoon. Why I didn't think to ask when the nurse called this morning is beyond me!
07-19-2015, 10:48 AM   #316
awmom
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Hi Clash....glad you like the doc and it seems like she is approachable which is always good!! I have heard the word suture as it relates to joints. I think it mainly relates to joints that don't move much so I am not sure it applies to SI joints. I hope you get some answers soon.
07-25-2015, 07:51 AM   #317
Clash
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Hey guys. We've been all caught up in readying for college around here. The nurse didn't call back that afternoon and by the time she did I had forgotten to ask what she meant about sutures but I think it must be similar to what awmom stated. I put in my notebook so I'll ask next appt.

C has a follow up GI appt in August. I'm thinking meds won't change (if they are going to) until after next scope which GI said would be late October mid November.

All is well this way, things are just moving along. C has had an altered sleep schedule since dx. Nothing we've done has got it back on track. It is a point of concern as he starts college. Well, he started dating someone a couple weeks ago and she brings him breakfast a couple mornings a week. Needless to say, he is now trying to alter it himself to fit her schedule...ahhh the power of hormones!
07-25-2015, 08:24 AM   #318
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I canít think of any words that sound like suture that would relate to the SI joint. Suture in relation to bones normally refer to the plates of the skull. Canít wait to find out what the word is!

So good to hear that things are continuing to go well with C!

And arenít you glad that I just happened to pop back onto the forum today only to find a statement like this!...

ahhh the power of hormones!
I wonít tell you what I would call it!

Dusty. xxx
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07-25-2015, 01:43 PM   #319
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Glad things are going well. Dreading the day my son starts seeing someone! Although it does sound motivating, lol
07-25-2015, 04:30 PM   #320
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Isn't it a relief when they starting dating the "mothering" type!
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Mom to daughter,age 5, diagnosed at age 3 with Crohn's Disease
Current Treatment: Humira (started 12/2014) moved to weekly injections (07/2015), Back to 50% EN orally. Zinc supplements. Calprotectin through the roof.
Previous Treatment: Azathioprine (discontiued 09/14 due to Pancreatitis) Flagyl, Sulfasalazine, EEN, Iron,Vit D, Zinc, SCD
07-27-2015, 08:46 AM   #321
Tesscorm
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I'm so glad all is going well!! There must be lots of excitement building around college!

And, lol, re the girlfriend! Amazing what they can accomplish!
07-27-2015, 11:54 AM   #322
awmom
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I'm so glad C is doing well, and having a girlfriend always makes things better!! Know what you mean by the sleep schedule being skewed. Last year (freshman in college) N chose only classes starting after 10am and preferably later! Don't think it's working out for this year!!!

Wishing him a great first college year!!
08-31-2015, 10:34 PM   #323
Clash
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So C had his August GI appt. He asked to go on his own and I agreed.

He will be having a scope in december. The rheumatologist had given us a Lab order to go along with whatever the GI ordered since at her visit it was to soon since last labs. The lab was everything the GI would order except she does ESR (SED) instead of CRP (of course since she is keeping up with his JSpA. The GI told C he wasn't gonna order CRP since it is always normal for him and not a good indicator.

Labs just came to online portal. HGB is 10 and his HCT, MCV and MCV are below normal. And where his SED rate was around 7 it is now 18 (high end of normal is 15). His joints have not been giving him any trouble at all.

I'll be calling both docs in the morning. His college classes start tomoroow.
08-31-2015, 10:38 PM   #324
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Way to go C for going on his own (also way to go Clash for letting him -- M's not going to any doctors on her own until she's 25 ).

Sorry to hear his ESR is high and hemoglobin low - really was hoping Humira would be his miracle . Does his GI have a plan for what's next, if Humira fails?

Hope C enjoys college!
08-31-2015, 11:10 PM   #325
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Sorry to hear that he has anemia.

Did they run Ferritin, Folate and B12?
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Catherine
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
09-01-2015, 08:35 AM   #326
Clash
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Maya142, it was hard to just let go and let him be the one in control like that. He did a fabulous job and covered everything I would have. I didn't feel much apprehension though since I knew this was just a regular scheduled checkup and he was having no symptoms. I doubt I'd have been as calm had he been experiencing issues.

I don't know what to think about his SED rate. I am calling both docs today. He has no joint issues. He also has had no CD issues but I've noticed a spike in bathroom visits. He said all was normal, no blood, mucus or anything. I guess wed need an fc to determine but he already has a scope coming up in december. GI did say he had gained 3 lbs and that he was pleased with C's appearance, that he "looked good". Asymptomatic sucks and I feel we never know what is truly going on!

Catherine, we already knew he had anemia, last time his HGB was a tad low and all other numbers on the low end of normal. He is on iron but I wonder if we shouldn't try an infusion. I may ask his GPS to run ferritin and other numbers.

His rheumatologist thinks it's anemia of chronic disease. I think his GI feels the same.
09-01-2015, 08:50 AM   #327
Maya142
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We did iron infusions and they worked MUCH better than supplements for M. She felt a lot better after the infusions - much less tired, less pale etc.

Sending hugs!!
09-01-2015, 08:56 AM   #328
Clash
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I'm going to push for the iron infusions. I have a feeling the SED rate may be depicting CD activity[although blood inflammatory markers have never been good tools for him in the past) because when his JSPA is flaring we have joint pain. I'm assuming 18 isn't an astronomically high SED for either disease, right?
09-01-2015, 08:57 AM   #329
awmom
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Gosh Clash I'm sorry about the concerning labs. Are his anemia markers much changed from the last ones? I wish they would do the labs BEFORE the doctor's visit so these could be discussed during the appointment! I do hope you get some answers soon. Wishing him a great first day of college!!!!!
09-01-2015, 09:02 AM   #330
Clash
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The HGB isn't much lower than last time and the other markers have dropped from low normal to up to 6 points below normal for each marker. I guess I'll know more after talking to the docs.

Thanks guys. Sometimes, even though we should be old hands at this stuff I still feel frustrated and confused at labs that are off. I feel blessed in some ways that C has been asymptomatic during flares I also feel we have little to go by in the way of determining what is really going on.
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