Share Facebook
Crohn's Disease Forum » Parents of Kids with IBD » We have a diagnosis! (And I'm not crazy!)


 
09-12-2016, 10:23 AM   #61
Mehita
Forum Monitor
 
Mehita's Avatar
 
Join Date: Nov 2011
Location: Minnesota

My Support Groups:
What about other intolerances? Fructose, or some other less common one? Have you done a food diary in awhile?
__________________
Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
09-12-2016, 10:32 AM   #62
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
Is she igA deficient that can affect some blood work ?
__________________
DS - -Crohn's -Stelara -mtx-IVIG
09-12-2016, 11:34 AM   #63
DanceMom
Senior Member
No other intolerances. We do have her on a low fat diet for the last few weeks (recommended for patients with IL).

Her IgA has always been normal. I believe her medication contains small amounts of IgA, so maybe this is a false positive because she actually carries other people's antibodies.

She's been complaining of a stomach ache and left sided rib pain since yesterday's run. I initially thought a side stitch but it hasn't gone away. Spleen maybe? Hers was enlarged before but discovered incidentally and didn't cause any symptoms. Now she has me worried.
__________________
A is 12

Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

Treatment: Hizentra, Flovent, Zyrtec, Cellcept
09-12-2016, 07:56 PM   #64
kimmidwife
Forum Monitor
 
kimmidwife's Avatar
How is she doing?
__________________

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.
09-12-2016, 08:46 PM   #65
DanceMom
Senior Member
After getting home this evening I looked at her stomach and there's a large (relative to her tiny frame) lump right below her left rib. She's in quite a bit of pain but no fever. On call Immunologist said to have her seen first thing in the morning, sooner if she develops a fever or can't sleep due to pain. Assuming it's her spleen...
09-13-2016, 01:51 PM   #66
DanceMom
Senior Member
Took her to the ER this morning. They did an ultrasound and xray and couldn't find a reason for the swelling. They diagnosed it as a superficial skin lesion, insisting she'd been scratched by a cat. We don't even have a cat. Her pain was a 6 yesterday, a 9 now. I'm super frustrated. I don't understand why she'd have this large swollen and painful lump because it certainly wasn't from a cat!
09-13-2016, 02:09 PM   #67
kimmidwife
Forum Monitor
 
kimmidwife's Avatar
What does her doctor say?
09-13-2016, 02:14 PM   #68
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
Did they do blood work to look for an infection??
What did her immunologist say ??
09-13-2016, 02:16 PM   #69
DanceMom
Senior Member
What does her doctor say?
She's not in clinic today. I didn't even bother to call and leave a message with such a ridiculous update.

She's more swollen now than she was this morning....
09-13-2016, 02:18 PM   #70
DanceMom
Senior Member
Did they do blood work to look for an infection??
What did her immunologist say ??
They ran a CBC but only because I demanded one. WBC low, RBC DISTR low, MCHC high.
09-13-2016, 02:37 PM   #71
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
If she is worse I would call the immunologist - the er is just to get stable and with complicated medical kids most of the time doesn't see the whole picture
Is her immunologist on staff at the hospital you went to ?
09-13-2016, 02:42 PM   #72
DanceMom
Senior Member
If she is worse I would call the immunologist - the er is just to get stable and with complicated medical kids most of the time doesn't see the whole picture
Is her immunologist on staff at the hospital you went to ?
Her clinic is located in the hospital but is not part of the hospital. I asked them to call and consult with her (Nemours always did) but they kept saying it was a skin issue and wasn't necessary. We've had substandard care before, but this topped it all.
09-13-2016, 02:58 PM   #73
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
If they didn't respect your wishes definitely call the immunologist
They need to know what it looks like now
And what the ER did
09-14-2016, 03:43 PM   #74
DanceMom
Senior Member
Quick question, would a chest x-ray show the entire small bowel? Any of it?
09-14-2016, 03:55 PM   #75
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
Typically no
They would do an abdominal X-ray ( which only shows very bottom of lungs )
If I remember correctly

http://www.nwhealth.edu/resource/radca/abdoch5.html
09-14-2016, 04:22 PM   #76
DanceMom
Senior Member
I'm just wondering why they did a chest x-ray and an ultrasound of rib area then....

If she had a small bowel obstruction would that cause swelling in multiple areas of her stomach? Everything I Google sounds like a possible diagnosis, but her BM today was pure liquid and she screamed and felt like she was dying during it. Pain returned to a 6 after BM. Waiting to hear back from Immunologist who was also not impressed with ER care.
09-14-2016, 09:40 PM   #77
kimmidwife
Forum Monitor
 
kimmidwife's Avatar
Thinking of you guys. How is your daughter doing?
What did the immunologist say?
09-15-2016, 04:18 AM   #78
DanceMom
Senior Member
Thinking of you guys. How is your daughter doing?
What did the immunologist say?
We have an appointment this morning. It looks like the swelling has gone down some. She says pain level is the same. This will probably be another of those "I have no idea what's wrong with her" things.
09-15-2016, 12:18 PM   #79
kimmidwife
Forum Monitor
 
kimmidwife's Avatar
Keep us posted. I hope they have an answer for you. When is her appt with the other doctor in Georgia?
09-15-2016, 02:26 PM   #80
DanceMom
Senior Member
Immunologist said it's erythema nodosum on her ribs....very rare to have it there and extremely painful. Hers are not red, but the doctor said they sometimes aren't when they're on the ribs or spine. She has one just under her right rib and clusters on her left. She was surprised A was calm because she said each breath had to be excruciating. My poor girl. She prescribed Prednisone.

Apparently the Nemours team (GIs and Vascular Surgeons) recommended surgery to remove the portion of her bowel affected by the IL. We're still going to Atlanta for a second opinion. Is this called a resection or something else? I never imagined surgery in her future so I've never researched this until now.
09-15-2016, 02:59 PM   #81
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
Depending on how much they take out
Small amount resection as long as they plan to reconnect the two parts but won't it reoccur
?
09-15-2016, 03:02 PM   #82
DanceMom
Senior Member
It could definitely reoccur. It could also be other places in her bowel that haven't been identified yet. But apparently surgery is often used when the disease is limited to one or two locations.
09-15-2016, 03:04 PM   #83
Maya142
Forum Monitor
 
Maya142's Avatar
Poor A!! That sounds awful! I hope she feels better with the steroids quickly.

A second opinion makes a lot of sense before surgery.
__________________
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
09-17-2016, 10:37 PM   #84
kimmidwife
Forum Monitor
 
kimmidwife's Avatar
I am surprised they are think g surgery so quickly. Glad you are going for another opinion. That is crazy that it is erythema nodosum. I never knew it could occur other places besides the arms and legs. I hope the steroids clear it right up. Glad you got an answer.
Keep us posted on the second opinion.
09-18-2016, 03:11 AM   #85
Sascot
Forum Monitor
 
Sascot's Avatar
 
Join Date: Aug 2011
Location: Falkirk, United Kingdom

My Support Groups:
Sorry to hear things have been so bad. Really hope the pred helps reduce the pain. What a lot to go through
09-18-2016, 06:51 AM   #86
DanceMom
Senior Member
I am surprised they are think g surgery so quickly. Glad you are going for another opinion. That is crazy that it is erythema nodosum. I never knew it could occur other places besides the arms and legs. I hope the steroids clear it right up. Glad you got an answer.
Keep us posted on the second opinion.
She's had EN on her spine before but they were smaller and not nearly as painful. The EN has now spread to her legs. Her chest x-ray was not exactly "normal" as I was told. It indicates thickening of the paraspinal stripe of the upper abdomen bilaterally and suggests doing an abdominal ultrasound (they only did an ultrasound of her rib). I'm not really sure what that means, but she's had a lot of chest x-rays and that finding is new.

I think the point of surgery would be a quick fix (as opposed to medication that doesn't work for a lot of patients). If the diseased bowel were removed she would be in remission and shouldn't need IVIG anymore. It's a tough decision to make!
09-18-2016, 03:53 PM   #87
Farmwife
Forum Monitor
 
Farmwife's Avatar
 
Join Date: Apr 2012
Location: Michigan

My Support Groups:
Hugs to you and A.
Grace had EN on her spine and arms before but mainly hits her shins and ankles.
The ones on her ankles hurt the worst. I can't imagine the ribs.
__________________
I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
09-18-2016, 07:02 PM   #88
kimmidwife
Forum Monitor
 
kimmidwife's Avatar
Dancemom,
I thought the IVIG was to boost her immune system? So how would surgical removal of the diseased bowel allow her to not need IVIG anymore?
I understand of course that surgery is sometimes needed of course but have they tried other treatments for the bowel besides IVIG?
Can she even safely take something like remicade with her immune system issues?
09-18-2016, 07:20 PM   #89
DanceMom
Senior Member
The Intestinal Lymphangiectasia in her duodenum causes dilated lymph vessels. Immune proteins like WBC and IgG are then lost through the bowel. To put it simply she poops out her immune system. Octreotide is a medication that could potentially shrink the lymph vessels and reduce lymph production but that would require daily painful shots (think Humira) forever. And Octreotide doesn't work for a lot of patients. The IVIG she gets monthly replaces her IgG and gives her immune system a little boost, but as her disease is progressing it just isn't enough. Remicade probably isn't effective in IL because IL doesn't necessarily mean inflammation. It's complicated...it is a lymph disorder of the GI system. The surgery recommendation came from a board of vascular surgeons and GIs. Her current symptoms are diarrhea, severe erythema nodosum, protein losing enteropathy, muscle atrophy, fatigue, vitamin deficiencies, and weight loss. We have to do something, I just don't know what yet. The prednisone is helping some, but it's a fairly low dose and short course (and not a very good long term solution).
09-18-2016, 09:18 PM   #90
CarolinAlaska
Holding It Together
 
CarolinAlaska's Avatar
 
Join Date: Jan 2013
Location: North Central, Illinois

My Support Groups:
I'm so sorry about all the trouble she is having! Praying you all can find the right solutions.
__________________
Carol
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.
Reply

Crohn's Disease Forum » Parents of Kids with IBD » We have a diagnosis! (And I'm not crazy!)
Thread Tools


All times are GMT -5. The time now is 09:23 AM.
Copyright 2006-2017 Crohnsforum.com