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Crohn's Disease Forum » Parents of Kids with IBD » We have a Treatment Plan!


 
10-14-2016, 06:32 PM   #1
DanceMom
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We have a Treatment Plan!

We saw the GI in Atlanta this week and thought he was great - very knowledgeable and really educated us about Primary Intestinal Lymphangiectasia. He explained that A does not digest fat properly, so every time she eats foods high in fat she's causing damage to her intestines. We're going to try a diet high in protein/low in fat. It should make a difference, but as you know healing will be slow.

We discussed using low dose prednisone if her gut needs a little boost to start the healing process...we'll see. We also discussed a scope procedure that uses a gas to "burn" her intestines (it doesn't hurt) forcing them to re-heal with the hope that the lymphatic vessels return to their normal size. We'll look at that option next year based on how she is doing with diet alone. We're starting with a very conservative approach because the drugs for PIL are limited and not at all convenient.

He did mention that he feels she has an immune issue separate from the protein loss caused by the PIL. Based on her scopes that always showed minor acute inflammation and changes not commonly found in PIL he thinks there is an immune dysfunction causing issues as well. He said it can be hard to differentiate which process is causing the symptoms. He described it as a very mild version of Crohn's...but not Crohn's....yet.

The lumps on her ribs have doubled in size and become even more painful. He felt that they were inflamed lymph nodes, which makes sense because she has a lymphatic disease. We're trying an Aleve/Prilosec (to prevent bleeding) combo to try to manage the pain and reduce the inflammation. We'll see...they may need to be removed at some point.

I feel relieved that we have a doctor that is willing to educate us and seems to genuinely want A to get better. It definitely gives me hope!
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A is 12

Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

Treatment: Privigen (IVIG), Flovent, Zyrtec, Cellcept
10-14-2016, 09:09 PM   #2
Cross-stitch gal
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Glad to hear that you're getting results and hopefully this means some comfort physically for her soon. Please keep us updated!
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10-15-2016, 04:46 PM   #3
Sascot
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That's great he was knowledgeable. Hope the treatment and diet helps a lot
10-19-2016, 08:14 PM   #4
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What great news!!!
Very glad you have a plan!!!!
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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.
10-23-2016, 06:19 PM   #5
DanceMom
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So A has been on the high protein/low fat diet for a week. She's getting 10-15 grams of fat per day and that's going well. I'm learning to plan ahead and she's adjusting to not being allowed to eat certain foods. Her weight loss has slowed down but she's not gaining....yet. Hopefully in a few weeks we'll see some gains.

Her WBC continue to be low and she's Neutropenic again. Lots of viruses floating around right now....

The lymph nodes on her ribs continue to be inflamed and very large but the Aleve helps her deal with the pain. We see the Immunologist in 4 weeks so we'll see what she thinks then.

All in all A is doing fairly well and it seems like she is starting to get some of her energy back. GI symptoms are very minimal and life is slowly getting back to normal.
10-23-2016, 07:17 PM   #6
Maya142
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Glad she's doing a bit better!! Hope she starts gaining soon!
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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
10-23-2016, 07:20 PM   #7
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Also wanted to add - we have learned over the years that different people respond to different NSAIDs. So if the Aleve/Prilosec combination does not work or causes side effects, another NSAID might still work. Rheumatologists often use Mobic or Celebrex for kids with JIA and gut issues.
10-23-2016, 07:22 PM   #8
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Glad things are improving
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10-23-2016, 07:56 PM   #9
xmdmom
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I'm glad you have a plan and at least the weight loss is slowing. Crossing my fingers that things improve quickly.

I'm curious about the lymph nodes -where on her ribs are they exactly, are they in between the ribs or actually on top of them, and how many and how big are they? Are they stable in size, increasing or decreasing? I've never seen/ heard of lymph nodes on ribs so I'm curious.
10-23-2016, 08:05 PM   #10
DanceMom
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Also wanted to add - we have learned over the years that different people respond to different NSAIDs. So if the Aleve/Prilosec combination does not work or causes side effects, another NSAID might still work. Rheumatologists often use Mobic or Celebrex for kids with JIA and gut issues.
The Aleve is to reduce the inflammation in her lymph nodes...not for joint/arthritis issues. I'm not sure that Mobic or Celebrex would work the same. Ibuprofen was not helpful at all but the Aleve has helped some.
10-23-2016, 08:11 PM   #11
DanceMom
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I'm glad you have a plan and at least the weight loss is slowing. Crossing my fingers that things improve quickly.

I'm curious about the lymph nodes -where on her ribs are they exactly, are they in between the ribs or actually on top of them, and how many and how big are they? Are they stable in size, increasing or decreasing? I've never seen/ heard of lymph nodes on ribs so I'm curious.
She has several large lumps on the bottom portion of the left side of her rib cage. They are not between the ribs and it is difficult to tell how many are actually inflamed. At times they seem to join together in one large lump the size of a toddler's fist. Apparently we have lymph nodes throughout our entire body (and the ones on the ribs rarely cause problems). A has been plagued by the nodes behind her right ear for years, and recently in her armpit and ribs. The ribs are by far the most painful.
10-23-2016, 08:19 PM   #12
Maya142
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The Aleve is to reduce the inflammation in her lymph nodes...not for joint/arthritis issues. I'm not sure that Mobic or Celebrex would work the same. Ibuprofen was not helpful at all but the Aleve has helped some.
All NSAIDs reduce inflammation (they are "Non-Steroidal Anti-Inflammatory Drugs"). Some work better than others, depending on the person. That might be why Aleve/Naproxen works better for her than Advil.

Mobic/Celebrex are just NSAIDs that are sometimes easier on the gut, that's all I meant (considering she does have gut issues!). If she can tolerate Aleve, that's great but if not, there are other options that might work better without the side effects.

We only learned that after my kiddo had gastritis, was anemic and had lost 15 lbs!
10-23-2016, 08:24 PM   #13
xmdmom
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I see that your seeing the immunologist in 4 weeks. Did he/she ever see the lymph nodes there? Could you call him or her and see if there's anything to do for the swollen nodes?
10-23-2016, 08:34 PM   #14
DanceMom
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I see that your seeing the immunologist in 4 weeks. Did he/she ever see the lymph nodes there? Could you call him or her and see if there's anything to do for the swollen nodes?
She saw the lumps about 6 weeks ago when they first appeared. She thought it was erythema nodosum and prescribed a prednisone pack. That didn't help so she prescribed another. It seems pretty clear now that it wasn't erythema nodosum (though she did have a horrible outbreak at the time so that made since back then).

The GI recommended Aleve and heat....and time. Said that's all we can really do for now. If they continue to cause problems and not respond to treatment they may have to be removed. The Prilosec has worked well to combat any GI issues from the Aleve.
10-23-2016, 08:58 PM   #15
xmdmom
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So were the lumps associated with redness/ discoloration of the skin as is typical for erythema nodosum? If you haven't, I would make sure the immunologist knows that she is still dealing with this.

Sending positive healing thoughts her way!
10-23-2016, 09:15 PM   #16
DanceMom
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So were the lumps associated with redness/ discoloration of the skin as is typical for erythema nodosum? If you haven't, I would make sure the immunologist knows that she is still dealing with this.

Sending positive healing thoughts her way!
No they were not. No redness at all. The infusion nurse sent a message over to her clinic so she'll find out this week. Inflamed lymph nodes are part of her lymphatic disease so I doubt she'll bat an eye. Thank you for the positive thoughts!
10-25-2016, 03:16 PM   #17
DanceMom
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Why is it that just when I get settled into our new normal someone pulls the rug out from under me? The Immunologist called and wants to see A this week. She's very concerned about her labs/ribs (and she's not the overly cautious type). My Mom instinct is telling me this is all part of her disease and she's fine. I hope I'm right.
10-25-2016, 10:36 PM   #18
kimmidwife
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Dancemom,
So sorry to hear. Saying a prayer for her. Keep us posted!
10-26-2016, 02:57 PM   #19
DanceMom
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Looked at her ribs last night and she has three new lumps. My heart sank. We see the doctor in the morning.
10-26-2016, 03:13 PM   #20
xmdmom
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Try to take it one step at a time [easier said than done].

It is good you are seeing the doctor.

Wishing her all the best.
10-26-2016, 05:45 PM   #21
kimmidwife
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Sry glad she is seeing the doctor tomorrow. I will keep a lookout for your update!
10-26-2016, 05:46 PM   #22
Maya142
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Poor A! Good luck tomorrow, I hope they can find some way to help.
10-26-2016, 05:50 PM   #23
my little penguin
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Good luck
Sending good thoughts your way
10-27-2016, 03:10 PM   #24
DanceMom
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The Immunologist said we were doing everything right regarding the lymph nodes. Said she'd wait several months before doing surgery but ultimately it was up to us. A is frustrated because it's getting worse instead of better. I want to give it a little more time.

On a positive note, she thought she looked better than the last two times she saw her. Said her color looked good. I think her energy level is up and I'm glad she looks healthier.
11-04-2016, 08:34 PM   #25
DanceMom
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A is now down a total of 5 lbs and has a very distended tummy. She's not constipated and I'm hoping it's not fluid. She's started passing blood several times per day so we're holding off on the Aleve for now. As you can imagine her rib pain is much worse. This is absolutely no fun. I emailed the GI but no response yet.
11-04-2016, 09:13 PM   #26
my little penguin
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Can you use volteran gel on her ribs?
When ds gets run inflammation from JSpA we have used that
It doesn't affect his gi tract like Mobic does.
Is she taking in the same amount of calories a day on her new diet ???

Hope gi has answers for you
11-04-2016, 09:21 PM   #27
Maya142
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We also use Voltaren gel. Sometimes Lidoderm (lidocaine) patches work too (and are pretty benign).

Really hope the GI has suggestions .
11-04-2016, 10:19 PM   #28
DanceMom
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We didn't count calories before the diet so I have nothing to compare to. She eats mostly fish, shrimp, turkey, chicken, pasta, rice, potatoes, fruits and veggies. We're experimenting with protein shakes but haven't found one she likes.

I'm not sure if the gel would help. The swelling is pretty significant. We'll see what the GI suggests. I will contact the Immunologist next week when she's in clinic.
11-04-2016, 10:22 PM   #29
Maya142
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We do NSAIDs with a PPI - that helps prevent GI issues. My younger daughter became very anemic before we finally figured out she needed a PPI.

It doesn't work for everyone and if she's bleeding a lot it may be too risky to try it though.

Tramadol might help with the pain and should not bother her stomach too much.

Sending hugs!
11-05-2016, 05:20 AM   #30
my little penguin
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We didn't count calories before but the GI can give a number of get x amount of calories in and bump up to y if she is dancing.
My fitness pal helps
Ds is to have 2000-2300 depending on activity
Very easy but let's the gi know if he starts losing weight that it's not just not eating enough
He has gastroparesis so he typically can not eat enough with just food

Really important when you go low fat since large volumes are needed to get the same amount of calories
Ds is low fat low fiber
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