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


 
06-08-2016, 01:50 PM   #1
DanceMom
Senior Member
We have a diagnosis! (And I'm not crazy!)

Doctors have a way of making you feel crazy when you take your child in repeatedly, stating how sick she is, but they can't figure out what's wrong. Well today we got a "real diagnosis" and validation that I'm not crazy.

A has been diagnosed with Intestinal Lymphangiectasia. This is the cause of her Hypogammaglobulinemia. Her biopsy from January discovered this but her GI didn't seem to agree. We met with the Immunologist today and she stated that she always thought A had IL but couldn't prove it until now. Primary IL is extremely rare and the Immunologist is currently looking for a doctor that can treat her. Our GI does not have experience with this condition, so as much as we love him we may have to move on.

Treatment could include diet changes, bowel resection, medication, or a combo of those things. I'm anxious to get her on the right track! I've been on the verge of an anxiety attack all day.
__________________
A is 12

Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

Treatment: Hizentra, Flovent, Zyrtec, Cellcept
06-08-2016, 04:20 PM   #2
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
I am glad you finally have a diagnosis.
06-09-2016, 06:10 AM   #3
CarolinAlaska
Holding It Together
 
CarolinAlaska's Avatar
 
Join Date: Jan 2013
Location: North Central, Illinois

My Support Groups:
I've never heard of this. I'm glad she (and you) finally have an answer. I'll pray you find just the right doctor to treat her.
__________________
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.
06-09-2016, 06:17 AM   #4
CarolinAlaska
Holding It Together
 
CarolinAlaska's Avatar
 
Join Date: Jan 2013
Location: North Central, Illinois

My Support Groups:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2288596/

Maybe you found this, but I found it informative about primary intestinal lymphangectasia.
06-09-2016, 09:22 AM   #5
caretothepeople
 
caretothepeople's Avatar
 
Join Date: Jun 2015
The National Organization for Rare Disorders also has an information page with a list of resources and support organizations: http://rarediseases.org/rare-disease...phangiectasia/

In particular the Lymphatic Education network might be worthwhile to check out : http://lymphaticnetwork.org/ask-expe...ey-rockson/P30

Good luck and it's great to hear your daughter is getting the care she needs!
06-09-2016, 07:03 PM   #6
Farmwife
Forum Monitor
 
Farmwife's Avatar
 
Join Date: Apr 2012
Location: Michigan

My Support Groups:
We knew you weren't crazy.
Because if you were crazy
that meant we were crazy
and we couldn't have that.

I'm glad for answers for her and peace of mind for you.
__________________
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
06-26-2016, 07:54 PM   #7
DanceMom
Senior Member
We're still waiting to hear back from the Immunologist about a treatment plan. When I called to check in last week the nurse stated that the doctor was waiting to hear back from a physician she contacted (one I was not familiar with). I'm just ready to get things going.

A's IgE lab came back elevated at 156 (norm is <114). Anyone else have an elevated IgE? I know it can be indicative of several things and from what I've read it is common with PIL.
06-26-2016, 09:30 PM   #8
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
Elevated IgE is extremely common in allergic kids
Particularly environmental allergies
Ds has had high IgE levels every time they tested
Let me look for the values
I remeber them being really high
But not hyper IgE syndrome high
Never a concern
Just part of allergies
__________________
DS - -Crohn's -Stelara -mtx-IVIG
06-26-2016, 09:40 PM   #9
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
Last IgE was 417

Normal <88 for his age and the lab

At age 3 number was 305
Normal was < 60 for his age at the time
07-04-2016, 04:45 PM   #10
kimmidwife
Forum Monitor
 
kimmidwife's Avatar
Hooray for answers! Sorry I didn't see this sooner! Will be waiting to hear more as you hear more. Two questions, is she still diagnosed as having an immune disorder or does this take the place of that diagnosis?
Does she have extremity swelling as that seems to be a big symptom of this diagnosis?
__________________

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.
07-05-2016, 06:50 AM   #11
DanceMom
Senior Member
Her immune deficiency is considered secondary to the PIL. Her face swells, not her extremities. In talking with others that have PIL it seems that facial swelling is more typical in children and swelling of the extremities more typical in adulthood.

We're away at her National competition now (she's dancing really well!) and dealing with GI issues, asthma flare, and now a very infected lymph node. Calling the Immunologist this morning to see what can be done.
07-05-2016, 02:50 PM   #12
kimmidwife
Forum Monitor
 
kimmidwife's Avatar
Keep us posted! Sending a prayer for her to feel good at the competition.
07-06-2016, 04:26 AM   #13
DanceMom
Senior Member
Ended up at the ER. They decided it was an abscess with cellulitis. 10 days of antibiotics and watching it closely. Poor kid can't catch a break.
07-06-2016, 08:23 AM   #14
DanceMom
Senior Member
Pulmonology nurse just called with allergy results - Class 2 for dust mites and Class 3 for mold. Said she'd call later with the doctor's recommendations. I'm assuming this is the cause of her nagging sore throat.

On a positive note all her dances placed 2nd or 3rd at her first National competition including her solo! How she dances so beautifully when not well is baffling. We just arrived at her second National competition and we're relaxing before the whirlwind starts tomorrow. There's 58 in her solo age division, so fingers crossed!
07-06-2016, 09:03 AM   #15
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
Dust mites keep the house free of carpeting /curtains as much as possible
Keep temperature below 72 deg
Freeze or run through the dryer all stuffed animals

Good luck
07-06-2016, 12:19 PM   #16
CarolinAlaska
Holding It Together
 
CarolinAlaska's Avatar
 
Join Date: Jan 2013
Location: North Central, Illinois

My Support Groups:
Dust mites and mold? Ugh. I am lucky that my kids are just allergic to pollen and foods...
07-06-2016, 04:04 PM   #17
kimmidwife
Forum Monitor
 
kimmidwife's Avatar
I am allergic to dust mites, mold, grass, and a lot of other things. We have no carpet I g in the house which makes a huge difference. We also got those mattress covers that you zip around the entire mattress. It has really helped me. We also change the AC filter every two months. My husband says buy the cheap fitters and change them more frequently. It does exactly the same thing.
07-06-2016, 04:58 PM   #18
DanceMom
Senior Member
We only have carpet in the bedrooms, curtains only in the living room. All beds have nice mattress covers. I do need to dry her stuffed animals because she has tons of them. We keep our house between 73-75, which in FL can be difficult and expensive.

Doctor wants to try Zyrtec and gave her Prednisone for her cough. Ready to get her feeling better!
07-06-2016, 05:02 PM   #19
kimmidwife
Forum Monitor
 
kimmidwife's Avatar
You may want to get rid of the carpet in the bedroom.
07-06-2016, 05:03 PM   #20
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
Ds has been on Zyrtec daily since he was 18 months old
It does work well
There are also allergy shots which can improve things if you max out on meds
Ds did that at age 3
07-07-2016, 02:18 PM   #21
DanceMom
Senior Member
Just wanted to update! Several doses of her antibiotic and 2 doses of Prednisone and A feels great. I wish it was safe to take Prednisone long term because she thrives on it. Her infection looks so much better. And more great news....her solo placed 2nd out of 58 kids from several countries! So happy for her! She gets to perform again in the Showdown tomorrow night. Yay for a good day!
07-07-2016, 05:45 PM   #22
CarolinAlaska
Holding It Together
 
CarolinAlaska's Avatar
 
Join Date: Jan 2013
Location: North Central, Illinois

My Support Groups:
Congratulations to A! I'm glad she's feeling better.
07-08-2016, 11:02 AM   #23
kimmidwife
Forum Monitor
 
kimmidwife's Avatar
Very very glad to hear she is feeling better. That is amazing news!!!
07-10-2016, 02:43 PM   #24
Sascot
Forum Monitor
 
Sascot's Avatar
 
Join Date: Aug 2011
Location: Falkirk, United Kingdom

My Support Groups:
Great news she is feeling good and doing well at the dancing
07-19-2016, 10:57 PM   #25
DanceMom
Senior Member
It has been a crazy few weeks of ups and downs. A has felt pretty poorly all month so the Immunologist ordered a few tests. Turns out she has enterovirus which caused an asthma flare and GI symptoms. Nothing much can be done but it seems to be resolving slowly. Now she has what appears to be 2 infected bug bites on her leg. The doctor wants to avoid antibiotics if possible for fear it'll worsen the diarrhea that seems to be improving.

Her Immunologists (we seemed to have picked up another who is more available and very interested in A's case) have done lots of research and are considering long term steroids. We know there are risks, but they improve her quality of life so much. They want her to get over this virus/infections before starting though. Just seems to be one thing after another this summer!
07-19-2016, 10:58 PM   #26
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
It has been a crazy few weeks of ups and downs. A has felt pretty poorly all month so the Immunologist ordered a few tests. Turns out she has enterovirus which caused an asthma flare and GI symptoms. Nothing much can be done but it seems to be resolving slowly. Now she has what appears to be 2 infected bug bites on her leg. The doctor wants to avoid antibiotics if possible for fear it'll worsen the diarrhea that seems to be improving.

Her Immunologists (we seemed to have picked up another who is more available and very interested in A's case) have done lots of research and are considering long term steroids. We know there are risks, but they improve her quality of life so much. They want her to get over this virus/infections before starting though. Just seems to be one thing after another this summer!
So sorry


07-21-2016, 04:34 AM   #27
Sascot
Forum Monitor
 
Sascot's Avatar
 
Join Date: Aug 2011
Location: Falkirk, United Kingdom

My Support Groups:
Hope the virus and bug bites clear up soon. Glad you have a doc that is interested in researching and trying to help!
07-21-2016, 07:37 AM   #28
CarolinAlaska
Holding It Together
 
CarolinAlaska's Avatar
 
Join Date: Jan 2013
Location: North Central, Illinois

My Support Groups:
It helps to have docs interested in helping. I'm sorry it has to be long term steroids that be the thing that helps, but I'm glad something helps.
07-21-2016, 09:04 AM   #29
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
Big hugs long term steriods is not fun
Ds was suppose to do that for his sweets syndrome but even at 5 mg a day
Way too many side effects
Trying different meds now
But may have to go back to them

Good luck
07-21-2016, 10:54 AM   #30
Maya142
Forum Monitor
 
Maya142's Avatar
Yikes! I hope they work well for her. I know they used to use long-term steroids a lot for JRA and RA before there were biologics. What dose is she going to be on?

Fingers crossed for no side effects!
__________________
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
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 03:35 AM.
Copyright 2006-2017 Crohnsforum.com