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Crohn's Disease Forum » Parents of Kids with IBD » My 5 yr daughter has lymphocytic colitis, so confused!


09-01-2014, 11:18 PM   #1
Brem
 
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My 5 yr daughter has lymphocytic colitis, so confused!

Hi all,
My 5 yr old daughter has recently been diagnosed with lymphocytic colitis. It's been a rough road getting to this point & I'm sure you have all been thru equally stressful times
She has begun with Salazopryn (sulfasalazine) and seems to have improved, however recently she has been showing signs of regression, increased pain, diahorrea etc. However it's unclear as to wether it's diet related or not. We are not seeing her GI again for a couple of weeks but can get hold of her of I need to. I guess I just don't know what is normal diahorrea & what is classified as a 'flare'?
Our other major issue is food, I just can't seem to work it out, what might be ok one day isn't the next! What diet styles do you recommend? We currently follow, low residue, low fibre, lactose free, etc.. Low gluten.
Thanks & sorry for the long post!
09-02-2014, 12:02 AM   #2
araceli
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Hi and Welcome. Sorry about your daughter's diagnose. Call the GI and let him/her about her symptoms. Everybody is different, for us no loose stools and no pain at all is normal. Anything else will warrant a call to the GI. Sending hugs and support.
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dx 2011 crohn's in terminal ileum, peri-anal
Prior Meds Asacol, Prednisone, nexium
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09-02-2014, 12:38 AM   #3
Brem
 
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Thanks Araceli, that is good advice. I think I will contact her GI then, it's all very new (3 weeks) & still so much to learn!
09-02-2014, 02:18 AM   #4
Sascot
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Welcome. Sorry to hear about your daughters relapse. It's always worth phoning the GI or an IBD nurse (we have a GI nurse that is our first contact for problems), then you won't sit worrying as long. Food wise we tend to try options with less fibre, cook all veg and peel all fruit. We avoided salad at first because it's hard to digest, but I let my son have it twice a week now and he seems okay.
09-02-2014, 06:44 AM   #5
CrohnsKidMom
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Welcome to our forum family, but sorry to hear about your little girl. I have a 9 yr old son, dx'd with Crohn's a year ago. It is a rough ride-especially in the beginning-you're thrust into a world that you don't want to be in, and trying so hard to get your child feeling well. We all understand. As far as diet, we only went the low residue route and cut out lactose initially. Now we just try to eat as healthy as possible and limit unhealthy foods. IBD is so different in every case, so I guess I would just echo what the others have said. If you feel your daughter is regressing, give the GI clinic a call. Mom's intuition is best! I hope this is just a small bump in the road to getting your child to recovery. Take care!
09-02-2014, 07:12 AM   #6
Brem
 
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Thanks Crohn'skidmom & sascot. I will contact the IBD nurse tomorrow, two more weeks is a long time to wait for answers, it's so difficult to understand how she is feeling especially when you are second guessing all the time. My daughter is not a great communicator ..
09-02-2014, 11:36 AM   #7
Farmwife
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hI Berm and welcome aboard.

I'm another mom to a 5 yr old hand full.
grace is dx with microscopic colitis in the IBD family which is most likely Crohn's but could end up being UC.

Unfortunately with young ones the disease can change over time.
Some day the GI thinks my dd will have full blown IBD, as in visual damage. I however hope these drugs can keep that from happening but so far no luck.

My dd also is hard to read because she's so tough that she doesn't want anyone to know she's in pain.

Please ask as many Qs as you like.
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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

Last edited by Farmwife; 09-02-2014 at 07:28 PM. Reason: I cant read. lol
09-02-2014, 06:39 PM   #8
Brem
 
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Oh my Farmwife, so pleased to hear from you! It's like you have thrown me a lifeline! I have been wanting to speak with someone who is in my situation so badly lol.
How long ago was your daughter diagnosed? Like you my GI has indicated this could just be the beginning of Crohn's or similar too
What do you feed your daughter? Do you find she manipulates the answers to questions like, did that food hurt your tummy? So that she gets the outcome she wants...I.e. If she wants the food bad enough, making it near impossible to work out what to feed her!?
Thanks
09-02-2014, 07:24 PM   #9
Farmwife
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LOL, you mean our angles could manipulate us????
grace was dx at 3 but as suffered since birth. No doc would listen because she smiled and never shows it in labs. It wasn't until the scopes that we learned the truth.
She was also dx with an EgE/eosinophilc disease (allergic in nature) along with microscopic IBD.
By the time of scoping my DD had STOPPED eating. At dx she had an n-g tube place and was/is fed a special formula. Now se has a g-tube placed so she can be fed but still eats food that's safe for her.

Do you think she as food allergies?

I have the flip problem. She doesn't want much.
Yea I've often wonder if grace cant or wont eat an item.
My rule in my house is, if cant you finish it, you'll not be getting dessert.
With this rule I can tell if she being stubborn or she knows it will hurt.
I never put much on her plate when testing a new food. I build the amount over time if she can eat it.
But with sweets all bets off the table. She will gladly vomit after just to eat a chocolate cake.
I've learned one thing is she will give up the sweet if it hurts enough.

have you thought about adding supplemental drinks to her diet? This was she's getting the extra calories while you try to figure out her diet.

Ok more questions
Do you know where the worse microscopic damage found, like what areas in the track?
Do you have the biopsies report?
Is any of her labs off (sed, crp or anything) ?

BTW Maya142 is in the same boat....or was?
09-02-2014, 07:31 PM   #10
Maya142
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Same boat? M has been officially diagnosed with Crohn's (I think because she had granulomas in her terminal ileum?). But we did catch it early and so far it has been pretty mild.

My daughter has just started Enteral Nutrition via NG tube to help her gain weight. She's only been doing it for a week and she actually already feels better - has much more energy etc. She also has trouble eating when she isn't feeling well and lost a lot of weight over the last few years.

We have tried several diets and low fiber did help a lot when she was flaring. Gluten free didn't help at all. Lactose free also helped a lot with nausea and she tries to avoid dairy (but that doesn't usually work).

My daughter is a lot older than yours but she also often denies that she's in pain so she can do what she wants to. She eventually figured out that certain things make her hurt and decided it wasn't worth it. I bet that's a lot harder with a 5 year old! Does she have diarrhea after specific foods? A food diary is a good way to keep track of things.

Sorry don't have a lot of advice - there's a parents of young ones support group that Farmwife can direct you to. Sending hugs!
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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
09-02-2014, 07:31 PM   #11
Farmwife
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My g and h broke on my lap top. I'm trying to copy and paste but I never knew how many bloody words have those stinking letters in them.
09-02-2014, 07:35 PM   #12
Farmwife
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[QUOTE=Maya142;812118]Same boat? M has been officially diagnosed with Crohn's (I think because she had granulomas in her terminal ileum?). But we did catch it early and so far it has been pretty mild.

QUOTE]


Wasn't it microscopic damage? Is it visual now? I must be crazy with all this blasted coping and pasting.
09-02-2014, 07:36 PM   #13
Maya142
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I think microscopic mostly - her TI was "friable" (bled easily) and she had some tiny ulcers in her colon.

Her last set of scopes in January were mostly clean after the Remicade!
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