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


 
09-19-2016, 09:32 AM   #91
Sascot
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Very stressful trying to find something that works. Thinking of you
09-21-2016, 06:23 AM   #92
DanceMom
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A woke up with about 10 EN on her legs. The ones on her knees really hurt. Rib lumps still there as well. I'll have to call and ask for more prednisone. She still plans on going to gym tonight and running the 5k on Friday.....
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A is 12

Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

Treatment: Hizentra, Flovent, Zyrtec, Cellcept
09-21-2016, 12:29 PM   #93
Farmwife
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We use compression stocking on Grace's when she had more than 5 EN on her legs and knees.
Has A tried that?
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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
09-21-2016, 12:40 PM   #94
DanceMom
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We use compression stocking on Grace's when she had more than 5 EN on her legs and knees.
Has A tried that?
Did that help? They're very sensitive to touch so it seems like that'd be excruciating. The doctor prescribed another prednisone pack.
09-21-2016, 03:28 PM   #95
kimmidwife
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I am so sorry to hear. I hope the prednisone helps quickly!
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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.
09-23-2016, 04:27 AM   #96
DanceMom
Senior Member
She has over 20 EN now...it's crazy. She even has them on her upper arms (usually only gets them on lower arms). Her rib area is more swollen and her eyes are almost swollen shut. Our trip to Emory won't come soon enough!
09-24-2016, 07:25 PM   #97
Farmwife
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Did that help? They're very sensitive to touch so it seems like that'd be excruciating. The doctor prescribed another prednisone pack.
I agree, you'd think it would hurt but she says it helps.
Does she have some tight tights? Maybe a size to small?
I did this for grace and just cut the feet out.
Ace bandages were to uncomfortable for her but a composition garments seem to be fine.
09-24-2016, 07:31 PM   #98
Farmwife
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Had the EN been biopsy?
09-24-2016, 07:43 PM   #99
DanceMom
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Had the EN been biopsy?
This flare has not been biopsied, but we've had 3 biopsies in the past. Were Grace's biopsied? I mentioned wearing tights and her expression let me know she wasn't having that.

A ran her 5k and did well, but she's paying for it now. Around 30 EN now, and her rib pain is much worse (like it was in the beginning). I hate to see her like this.
09-24-2016, 07:59 PM   #100
my little penguin
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Honestly if it's like ds sweets syndrome(SS)
Until you get the trigger under control
It's so hard on them
Ds was miserable with sore lesions/flu like symptoms for close to a year
Finally after increasing mtx and humira things seem to be calming down
I really hope they can come up with a med fix for her quickly

Also understand not wanting to biopsy again
Between scars and trauma
Did the other biopsies confirm EN ?

Never easy when meds are limited btdt with SS
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09-24-2016, 07:59 PM   #101
kimmidwife
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Your poor baby! When do you go to Emory? Can you call Dan see if they can get her in sooner? This seems really urgent. They can't leave her suffering like this!
09-24-2016, 08:06 PM   #102
DanceMom
Senior Member
First biopsy confirmed EN with original Pathologist . Nemours Pathologist thought it could be vasculitis. Second biopsy came back as either EN or vasculitis. Third biopsy came back as EN or hives (definitely isn't hives). Every doctor that has seen it said it definitely looks like EN. Usually it doesn't bother her much but this flare is extremely painful for some reason.

We go to Emory on the 13th. Hopefully if we can get her GI condition under control all else will return to normal.
09-24-2016, 08:38 PM   #103
Maya142
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Sending hugs! Poor kiddo, that sounds painful. Can they give her something for pain, while you are waiting?

Really hope the second opinion helps.
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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
09-24-2016, 09:18 PM   #104
Farmwife
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This flare has not been biopsied, but we've had 3 biopsies in the past. Were Grace's biopsied? I mentioned wearing tights and her expression let me know she wasn't having that.

A ran her 5k and did well, but she's paying for it now. Around 30 EN now, and her rib pain is much worse (like it was in the beginning). I hate to see her like this.
No, never biopsied.
The rheumatologist, dermatologist and gp all agreed it was en.
If grace was like A's, I would get it done.
09-24-2016, 09:47 PM   #105
my little penguin
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Farmwife
Has Grace ever had a skin biopsy
We were told most of the time in auto immune kids the biopsies only show non specific inflammation which is hard to use to Dx anything
The biopsies are deep and takes weeks to heal to just get the stitches out and months to heal afterwards -not to mention scarring
Ds took six months to finally heal and just be a scar
We got lucky and got a Dx off the first biopsy
The Rheumo explained typically that is not the case
If it changes meds or adds scary meds in ds case then it's important to try to know
Or if it's a rare Dx as in ds Sweets syndrome - they need to be sure
But if it's not going to change meds with a confirmed biopsy Dx not sure I would do it again
09-25-2016, 05:16 AM   #106
Farmwife
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No mlp, never biopsied.
Grace's GP is the one who told us that he would wait.
The only time he went against what the others were saying.
I'm glad I listened but if she was like A's I would want to make sure.
09-25-2016, 06:32 AM   #107
DanceMom
Senior Member
A's first two biopsies were punch biopsies. The dermatologist did the first. Immunologist did the second. Pain was minor and she was tumbling two days later, stitches and all. I was so angry that the second was inconclusive and it took me months to agree to the excisional biopsy. I only agreed because I was desperate to help her. She did it without sedation, had pain for about two weeks, but in the end it didn't make much of a difference. I was then told that skin biopsies are very difficult to read and 5 different pathologists could have 5 different diagnoses from the same biopsy. Not very encouraging. A doesn't care about the scars but I'm angry she went through it.
10-03-2016, 07:19 PM   #108
DanceMom
Senior Member
It's been a rough week. A's ribs are still the same - swollen and sore. She complained of a sore throat so I took her to the pediatrician only to be told it was a virus (because she didn't have a fever). She then developed a painful inflamed lymph node in her armpit. Throat culture came back today positive for Strep. That only took 5 miserable days. Atlanta next week!
10-04-2016, 07:06 PM   #109
kimmidwife
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Thinking of you guys and hoping you get some answers in Atlanta!!!!
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Crohn's Disease Forum » Parents of Kids with IBD » We have a diagnosis! (And I'm not crazy!)
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