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10-22-2017, 06:22 PM   #1
DanceMom
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Update for A

It has been a rough few weeks. We saw the Urologist and ruled out any urinary issues. Somehow the 5 UTIs she was diagnosed with at Urgent Care weren't actually UTIs. Not even sure how that happens. We're going to look at possible GI causes for the pelvic pain, nausea/vomiting. If anyone has any suggestions I'd love to hear them.

She's had a sinus infection/asthma flare that isn't responding to meds. We're on day 15 or so of the antibiotic, doubled her inhaler, tried steroids, and of course sinus rinses. Her IgG likely isn't high enough to fight this off and the best her system can do is increase WBC to a whopping 5.

She had another reaction at her last infusion so we're left with no choice but to try subQ. She's very unhappy about the change. We meet with the doctor this week to discuss.

And as if that isn't enough she's having diarrhea 10+ times per day since Friday. Maybe from the antibiotics. Could be a virus. Or possibly her immune system is just out of whack again.

Thoughts/prayers/suggestions appreciated!
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A is 12

Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

Treatment: Privigen (IVIG), Flovent, Zyrtec, Cellcept
10-22-2017, 06:44 PM   #2
my little penguin
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Given her age has she seen a gynecologist?

Sometimes very young girls can have issues in their pelvis even before puberty

Good luck
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10-22-2017, 06:51 PM   #3
DanceMom
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Given her age has she seen a gynecologist?

Sometimes very young girls can have issues in their pelvis even before puberty

Good luck
No, but I did wonder about that. If nothing checks out GI wise that may be our next stop.
10-22-2017, 07:06 PM   #4
Maya142
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Has she been tested for CDiff after the antibiotics?

I would also second the gynecologist. We actually went to a gynecologist for my daughter before she was diagnosed with Crohn's - she was 16 at the time. She was referred because an MRI of her SI joints showed ovarian cysts and given that she was having abdominal pain/pelvic pain, we thought they might be related.

The other suggestion was interstitial cystitis, but we didn't really explore that because M ended up having positive scopes for Crohn's.

We've met 2 kids with JIA and immunodeficiencies (older teenagers) who do subQ IVIG and really like it.

Is there a foundation or camp or something like that for kids with immunodeficiencies? I'm just wondering if they could connect A with someone her age or older who has had a good experience with subQ.

Hope they are able to figure out what is going on.
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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
10-22-2017, 08:18 PM   #5
DanceMom
Senior Member
Has she been tested for CDiff after the antibiotics?

I would also second the gynecologist. We actually went to a gynecologist for my daughter before she was diagnosed with Crohn's - she was 16 at the time. She was referred because an MRI of her SI joints showed ovarian cysts and given that she was having abdominal pain/pelvic pain, we thought they might be related.

The other suggestion was interstitial cystitis, but we didn't really explore that because M ended up having positive scopes for Crohn's.

We've met 2 kids with JIA and immunodeficiencies (older teenagers) who do subQ IVIG and really like it.

Is there a foundation or camp or something like that for kids with immunodeficiencies? I'm just wondering if they could connect A with someone her age or older who has had a good experience with subQ.

Hope they are able to figure out what is going on.
We have not tested for Cdiff. She's never had it before and this doesn't seem to have that distinct smell I've read about.

She has her reasons for not wanting to do subQ and we respected those for as long as possible. She knows other kids on it. It's an individual preference sort of thing. It's not the end of the world to switch but we're definitely disappointed.
10-22-2017, 08:23 PM   #6
Maya142
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Poor kiddo. It is tough to change but hopefully it will go well and it won't be too hard.

We have never had a distinct smell with CDiff - just watery diarrhea, belly pain and nausea. M has had it twice, both times after being on antibiotics. We know to worry when she has watery D more than 10 times a day...I would let her GI know. Our GI always tests for CDiff and other GI infections.
10-22-2017, 09:03 PM   #7
DanceMom
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Poor kiddo. It is tough to change but hopefully it will go well and it won't be too hard.

We have never had a distinct smell with CDiff - just watery diarrhea, belly pain and nausea. M has had it twice, both times after being on antibiotics. We know to worry when she has watery D more than 10 times a day...I would let her GI know. Our GI always tests for CDiff and other GI infections.
He does know. We have to complete labs (done) and x-ray prior to appointment. Labs looked fine. ALT and AST only slightly elevated.
10-30-2017, 08:12 PM   #8
kimmidwife
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I am so sorry she is having such a hard time. It seems like our kids just canít catch a break. I hope she does okay with the subq fingers crossed for her!!
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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.
11-12-2017, 04:15 AM   #9
DanceMom
Senior Member
A has not been able to start subQ infusions yet. Waiting on insurance.

She's currently admitted with a severe infection. They initially thought acute appendicitis because symptoms and ultrasound suggested it, but now they're leaning toward bowel infection with affected appendix/liver. The surgeon stated that her bowels were "very quiet and not working properly." It's been pretty scary, and getting her pain under control has been difficult. Not sure if they'll remove the appendix today or not.
11-12-2017, 06:56 AM   #10
Maya142
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Yikes!! Poor A! That sounds awful. I hope they are able to get her pain under control and get her fixed up quickly.

We will be thinking of her .
11-12-2017, 07:37 AM   #11
my little penguin
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Big hugs
Sending lots of healthy vibes your way
11-12-2017, 08:41 AM   #12
DanceMom
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Have any of you had Crohn's affect the appendix? If so, what did that look like? Recent talk is questioning a possible Crohn's diagnosis.
11-12-2017, 09:55 AM   #13
my little penguin
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I though Dusty had one of her kids with the appendix ??
Can't remember
Biopsy should be able to confirm
Inpatient biopsy typically is turned around in 24 hours or less for ds in the past
11-12-2017, 10:37 AM   #14
pdx
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So sorry to hear all this. Really hope everything goes well, and that her pain is controlled soon.
11-12-2017, 11:19 AM   #15
DanceMom
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GI came in. The GI team here is fabulous. He thinks appendicitis and possible bowel infection too. May have surgery later today.
11-12-2017, 01:56 PM   #16
Maya142
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Any more news?? Thinking of A.
11-12-2017, 02:51 PM   #17
DanceMom
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Appendix is out. Surgeon said colon looked mildly inflamed from the outside. Hoping she recovers well and the infection is clear.
11-12-2017, 07:07 PM   #18
my little penguin
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How are things this evening ?
Any better ?
Can they give sub q ig since she is inpatient?
11-12-2017, 09:01 PM   #19
DanceMom
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She feels so much better. Up and walking, trying to wake her bowels up. Our Immunologist is at a different hospital so there's really no talk of subQ here. I'm guessing she'll go home soon and have a follow-up appointment in a few days.
11-12-2017, 09:58 PM   #20
my little penguin
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Glad she is up and about
Healing thoughts
11-12-2017, 10:03 PM   #21
Maya142
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Glad she is up and walking. It took 3-4 days for my daughter's bowels to "wake up" and for her to have a BM.

Of course, that was a different abdominal surgery (J tube) so hopefully it will happen faster for A!
11-12-2017, 10:47 PM   #22
pdx
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Great to hear that she is feeling better. Hope her recovery continues to go well!
11-13-2017, 01:53 PM   #23
DanceMom
Senior Member
A is going home today. She's eating, walking, and passing gas. From a surgery standpoint she's doing great. WBC are still elevated. Doctor isn't sure if it's infection or inflammation related. He said labs should be repeated in a week. Normally I'd be confident in that plan but she continues to have sinus infection symptoms and obtaining subQ infusions is still 3-4 weeks away per insurance company. Frustrated is an understatement.
11-15-2017, 05:45 PM   #24
DanceMom
Senior Member
Pathology report reads:

Abundant luminal neutrophils
Focal active inflammation
Lumen partially filled with fecalith material
Appendix with vascular congestion

Follow-up with surgeon in 2 weeks. We see pediatrician tomorrow to discuss sinus issues and infection risk. Any thoughts on pathology report? Seem like typical appendicitis? My biggest concern is missing a bigger issue.
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