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Update for A

D

DanceMom

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!
 
my little penguin

my little penguin

Moderator
Staff member
Given her age has she seen a gynecologist?

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

Good luck
 
Maya142

Maya142

Moderator
Staff 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.
 
D

DanceMom

Maya142 said:
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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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.
 
Maya142

Maya142

Moderator
Staff member
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.
 
D

DanceMom

Maya142 said:
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.
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He does know. We have to complete labs (done) and x-ray prior to appointment. Labs looked fine. ALT and AST only slightly elevated.
 
kimmidwife

kimmidwife

I am so sorry she is having such a hard time. It seems like our kids just can’t catch a break. I hope she does okay with the subq fingers crossed for her!!
 
D

DanceMom

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.
 
Maya142

Maya142

Moderator
Staff member
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 :ghug:.
 
D

DanceMom

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.
 
my little penguin

my little penguin

Moderator
Staff member
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
 
pdx

pdx

So sorry to hear all this. Really hope everything goes well, and that her pain is controlled soon.
 
D

DanceMom

GI came in. The GI team here is fabulous. He thinks appendicitis and possible bowel infection too. May have surgery later today.
 
D

DanceMom

Appendix is out. Surgeon said colon looked mildly inflamed from the outside. Hoping she recovers well and the infection is clear.
 
D

DanceMom

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.
 
Maya142

Maya142

Moderator
Staff member
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!
 
D

DanceMom

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.
 
D

DanceMom

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.
 
D

DanceMom

A is going to have her first home infusion of Hizentra today. Nervous but excited for this new chapter. I'm going to have the nurse check her incision sites. One is becoming increasingly more painful and swollen and that just doesn't seem right to me. Then again I have no experience with surgery and incisions. Opinions?
 
Maya142

Maya142

Moderator
Staff member
That definitely isn't right - it should be getting better, not more painful or swollen. We have had red surgical sites that I was sure were infected, but turned out to be just irritated. But someone had to see it to make sure, especially with A's history. I hope the home health nurse can give you some answers and it's not infected.

Good luck with her infusion!!
 
D

DanceMom

Infusion went really well! Nurse thought I should contact surgeon so I called again. They asked me to send pictures so I did. Waiting to hear back.
 
Maya142

Maya142

Moderator
Staff member
Is it leaking fluid? My daughter's was red, a bit swollen and leaking fluid and it turns out often a collection of fluid forms under the skin which is totally normal - it's called a seroma. It's clear-ish fluid. Of course, no one warned us that might happen, so it took pictures and several phone calls before someone finally identified it and said it wasn't serious.

Fingers crossed - hope it's not an infection.

And way to go A - glad the infusion went well!!
 
D

DanceMom

No fluid leaking. It's so bruised I don't think you would know if it were also red. The bruising doesn't worry me because her platelets are low. But the golf ball sized knot and increasing pain just don't seem normal. Surgery PA saw pictures and said it was fine though. Hope she's right.
 
D

DanceMom

A is doing so much better and can finally stand up straight again! Her abdomen is still very swollen overall, but all incision sites look pretty similar now. They started leaking a little pink fluid but this seems to be normal so I'm going to stop worrying.

Her sinus CT came back normal. So no explanation for the constant runny nose, blood, headache and facial pain. For now I'll chalk it up to needing to be stabilized on infusions again and labs that are probably still very off.

Tomorrow we attempt her infusion without the help of the nurse. A tad nervous, but it should be just fine. Just ready to get her feeling good again!
 
D

DanceMom

A has the flu! Ugh! Tried Tamiflu but after 45 minutes she vomited so we have to discontinue. One step forward 5 steps back.
 
Maya142

Maya142

Moderator
Staff member
Oh no!! Poor A. Tell her to hang in there. Hope it doesn't hit her too hard and she feels better soon :ghug:.
 
D

DanceMom

She actually got over the flu fairly quickly with no major issues. I credit the flu shot.

Infusions have become a nightmare though. For the past 3 weeks the burning is so intense that she basically screams the entire 30 minute infusion. It is heartbreaking. The medication isn't absorbing by morning so she's left to walk around with large lumps on her sore and shaky legs the following day. If this happened once a month it'd be tolerable. Once a week is terrible. She has an Immunology appointment tomorrow so hopefully we'll have options.
 
my little penguin

my little penguin

Moderator
Staff member
Big hugs to A

Hard when she needs it


We actually stopped ivig since Ds only got horrid side effects for over a week woth no real
Improvement in his symptoms so ....
 
Maya142

Maya142

Moderator
Staff member
Poor A!!! That sounds horrible. Is the burning common with subq IVIG?

I hope the immunologist has ideas.
 
D

DanceMom

I think some burning is common. It's always burned a little when it first starts to go in. Only recently has it started burning this bad for this long. I've tried to convince her to try her arms or stomach but she's afraid to.
 
D

DanceMom

Had our Immunology appointment. Found out A had CDiff back in October that was missed. IV antibiotics with appendicitis seemed to treat it because all is fine now. Going to try 12mm needles for infusion instead of 9mm. Theory is that the med needs to go a little deeper. Fingers crossed for a healthier and happier February!
 
D

DanceMom

Infusions are going well. IgG is higher than ever. Unfortunately she's having liver issues again. We tried to decrease the Cellcept dose so she could switch to pills and she flared. So we increased the dose and her liver doesn't seem too happy. She's covered in EN too so that's not good. Repeating labs tomorrow so the team can develop a game plan.
 
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