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Crohn's Disease Forum » Parents of Kids with IBD » Farm Girl and IBD and Eosinophilic Disease


 
01-17-2013, 02:37 PM   #1
Farmwife
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Farm Girl and IBD and Eosinophilic Disease

New day, new dx and a new start. I'm ready!


I was told today....Her officially DX is now....IBD and Eosinophilic Disease.


Two diseases. Grace has always been talented.

I think hearing the first dx of Colitis has helped me get use to the idea.
I don't know, I just feel like OK, let get on fighting this thing.
I don't care if she has 10 diseases, I will get my little girl back.




Brief description of Eosinophilic Disease (EGID's)
Eosinophilic (ee oh sin oh fill ick) disorders occur when the body reacts to trigger(s) by creating too many white blood cells (eosinophils) which hang out in inappropriate places creating trouble. White blood cells target germs and other invaders; in eos kids, they recognize normally harmless things as *enemies*.

This has been referred to as "The Mother of All Food Allergies". Kids with eos disorders may or may not also have IgE allergies, but the reality is that their bodies react inappropriately to triggers, which frequently include food(s).


This problem is, left unchecked causes damage to the intestines, wherever the eos is at.
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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; 01-22-2013 at 08:38 PM.
01-17-2013, 03:46 PM   #2
Lewis,s mum
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Well they are really giving u lots to deal with mrs I tell the kids Lewis and Ellie u have been given these illness.s because god nos u can handle it and ur a strong person. " my Ellie was diagnosed with psoriasis today she is covered head to toe in it they've told me it goes hand in hand with Crohns , by the way what is eosinophilic disease I will google it but I've never heard of it ' Hun , big big hugs to u ur a great mummy and grace has the best career .xxxx
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lewis dx age 5

had first peri anal abcess age 2.
fought for his dx for 3 years
disease is located in . his peri anal, rectum colan and small bowel
meds todate are
infliximab 6 weekly
Azathioprine 50 mg daily
omeprazole 40 mg daily
buscopan 30 mg Daily
movicol 5 sachets at present a day
01-17-2013, 04:50 PM   #3
Sascot
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It's good that they have finally decided what diagnosis to make. That means they can start to give some treatment so your precious girl can start getting better! Do they have any treatment plan now that they have decided what she has?
01-17-2013, 04:57 PM   #4
Jmrogers4
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I'm with you Lewis's mom, I had to google it. You definitely have your plate full FW but at least you can move forward now with a plan and get that adorable little princess feeling, well princessey (new word and I like it)
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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
01-17-2013, 05:06 PM   #5
Farmwife
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Well...yes and no.

The GI wants to give more time for EN to work because pred will be in her future because of both diseases. The nurse said we have to be aware of this and not over use it all the time.
She said EN is a great way to get inflammation down but the GI is very aware that Grace is struggling which is why he put her on Donnatal. They tried to get Grace into the rheumy sooner but no go for now. My GP is going to call the rheumy and see what meds would be the best.

This is all new and a bit overwhelming now. How do I know what's causing the pain? Is it IBD or EOS disease? What if they treat IBD when it's EOS causing this. Or visa versa?
I'll learn more as I go.
The nurse said Grace is now part of the "problem file". GREAT!
Well at least it's not because I'm the problem.....yet.

As far as the second opinion to Cinncy, my hubby and I have to talk about it.
01-17-2013, 05:11 PM   #6
xSophiexx
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Hiya im not a parent but i often read the parents section as you all seem to have a lot of knowledge and its often helpful.
I just wanted to say Farmwife that your (adorable) little girl is very lucky to have you i have read her story and its clear you have fought for this diagnosis every step of the way and when she is older she will be very greatful.. my mummy has done the same for me (although im 22 not 3 lol) and i love her to bits for it!

Just thought id tell u from a (sort of) 'kid with ibd' perspective :-)

I hope your little one responds well to treatmentt x
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Ileum and Jejunum

Ileocaecal Resection 12th June 2013

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01-17-2013, 05:11 PM   #7
Jmrogers4
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You poor thing, obviously not as bad but I remember when my hubby was dx'd right before we got married and we had reservations and everything to go to Puerta Vallerta for our honeymoon and his GI said no way! I wouldn't know whether to treat you for Montezuma's revenge or Crohn's so we went to Disneyworld, (still haven't ever made it to Mexico)
01-17-2013, 05:15 PM   #8
Farmwife
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Hiya im not a parent but i often read the parents section as you all seem to have a lot of knowledge and its often helpful.
I just wanted to say Farmwife that your (adorable) little girl is very lucky to have you i have read her story and its clear you have fought for this diagnosis every step of the way and when she is older she will be very greatful.. my mummy has done the same for me (although im 22 not 3 lol) and i love her to bits for it!

Just thought id tell u from a (sort of) 'kid with ibd' perspective :-)

I hope your little one responds well to treatmentt x
xSophiexx

Well prune my magnolia's. Your as sweet as a sugared peach!
Ya just made my friends list.
01-17-2013, 05:21 PM   #9
xSophiexx
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Well as i doubt she understands it all just yet but one day she will - its lovely to have a supportive family! Especially girls and their mummys <3
And awwww i feel honoured :-)
Xx
01-17-2013, 05:51 PM   #10
my little penguin
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At this point Cincy would not be a second opinion
The cced has a week long program to teach parents how to manage egid so they can go home and be under the care of their local Gi.
It involves psych since she may need a permanent tube and never get a full diet back or be on a very strict diet of 20 foods for the rest of her life.
They involve allergy since this is the mother of all allergic diseases.
There is Gi of course as well as nutrition .

So not a do you have this sorta thing but here is how you manage it for life sorta thing.
Before you decide talk to the intake coordinator.

KFA is your best bet on the egid side a seperate us forum of moms who deal with the formula and food trials- what constitutes a fail or a pass etc...

How to read labels - how to bake a cake without wheat milk eggs only using strange flours etc....
They can explain what are freebies - foods and flavors that do not need to be trialed.
Unlike Ibd - there truly is no med to fix it other than steroids- it is all diet but all food are suspect until proven otherwise .
Same way with all food including oils etc..
They can teach how to make a cotton candy cake ( pure sugar) for her birthday or how to make a no foods birthday cake without tears - we can help here with Ibd side
But EGE is a whole other way of life.
So sorry about that .
Here is a link to a primer from a mom of a 9 ( at the time) with EoE one version of egid

http://community.kidswithfoodallergi...82717251713964
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01-17-2013, 05:53 PM   #11
my little penguin
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http://www.naspghan.org/user-assets/...0Consensus.pdf

You will need this
01-17-2013, 05:53 PM   #12
my little penguin
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And this
01-17-2013, 05:54 PM   #13
my little penguin
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And this
01-17-2013, 06:01 PM   #14
Farmwife
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Thank MLP.
I joined the other forum. PM your user-name here so when you type I don't think your some crazy nut.
The asked me a Q. How do we know it's not EC?
The GI nurse stated..it's both for sure. How do I know that. I'll ask the GI but was wondering if you knew.

I think I was right all along.
I think her LDH is the key for disease progression. I just don't know which one or is it both.

I told my Grandma this morning that it's fine. I'm not worried like I was with the Colitis dx but now that's it's evening all the what ifs are coming into play. I hate that.
01-17-2013, 06:11 PM   #15
crohnsinct
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Hate to add to your list but what are friends for....

If he is sure it is IBD which one or is he not sure? Either way, EEN is good at getting a child to remission but not as successful at keeping remission. You may have to have a talk with the GI regarding a maintenance med.

Heck, the way I see it the GI should be pulling you in for a detailed conversation about all aspects but what do I know.
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Methotrexate (12.5mg wkly - oral)
Vit d 2000IU
Multi vitamin plus iron
Calcium
Folic Acid
Previously used - Prednisone, Prevacid, Enteral Nutrition

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohns
Methotrexate (15mg weekly oral)
Enteral Nutrition
Entocort
IBD-AID Diet
Vit d 1000IU
Calcium
Folic Acid
Previously used: Mtx injections
01-17-2013, 06:35 PM   #16
Farmwife
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Crohn's "without" proof.
She'll need re-scoping because of the EOS. He'll take more samples then.
I'm still going to push for a MRE. Something is wrong with her small bowels.
01-18-2013, 11:44 AM   #17
Farmwife
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Did I mention I love Grace's new GP?????????

She is going to have Grace do water aerobic therapy.
It will help ease some of the joint pains and help her have some fun once a week.
I'm even looking forward to it because as we all know...mother's have to go into the in-door, warm sauna like water in the middle of winter with their kids. I'll just have to suffer through it.
01-18-2013, 12:00 PM   #18
crohnsinct
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Warm sauna like water? Girl where do you swim? No pool around here is warm. They keep it cool for the competitive swimmer lest they pass out from their workouts. Totally stinks for the mommy and me class and the little ones. I froze me tuckus off and hated every minute of that class.

There was a pool a half hour away that had a smaller pool for the little ones and it was heated higher...at least I think it was heat But too far for me to travel for mommy and me so I sufferred.

Good luck!
01-18-2013, 12:08 PM   #19
Farmwife
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Well...this pool is 20 by 30. Water kept at 98-100 degrees. The therapist are trained to deal with kids. They have cool floats for kids that can't swim yet. She'll love the work out.
As for me, I shall be a drift on a float, drinking OJ and pretending I'm anywhere but here!!! I wonder if they'll let me put up a couple fake palm trees with a hammock?
01-18-2013, 12:10 PM   #20
my little penguin
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Enjoy
Regular pool very cold
Therapy pools at the y at least are really warm and small
01-18-2013, 12:58 PM   #21
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OMG Farmwife what a rollercoaster of a couple of weeks you have had, I have been offline for about a week and a half so I was surprised by everything you have had to deal with - things move fast in the world of IBD. Sorry to hear about her double diagnosis but now you know for definiate what you are dealing with and you can face it head on. I so know what you mean when you start thinking of the what ifs but I have learned that it doesnt do anybody any good we have to live in the here and now and deal with the hand we are dealt and if Grace is anything like lucy which I am sure she is - she will deal with her illness far better than us Moms ever will.

Poor Grace sounds like she has had a really rough time ( I read your other thread) so I hope she is feeling better. Really hope the EN gets her into remission for you. Lots of hugs and thinking of you all.
Pollyxxx
01-18-2013, 03:08 PM   #22
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I just wanted to add my hugs to you and Grace! It is good that you FINALLY have a firm diagnosis but I'm sorry that these are the diagnosis that you received.

I, too, would have thought that the GI would have provided you with more info re EOS and how to manage it. I've been jumping in and out so often lately, it's been a bit hard to keep track of everything but do you have another upcoming GI appointment? Perhaps they will provide you with more info then.

Agree you should keep pushing for an MRE!!

Thinking of you
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Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
01-18-2013, 04:21 PM   #23
Sascot
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That water aerobics therapy sounds great. Something that is enjoyable and helps Grace - what more could you ask for
01-19-2013, 06:00 AM   #24
DustyKat
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Oh Farmwife......your poor little princess... I so hope things start to settle for her.

Now the number one rule of hydrotherapy...no pissing in pool! and no thinking you can get away it because there is no warm spot to give you away!

In my thoughts hun.
Dusty. xxx
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01-19-2013, 08:18 AM   #25
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I am glad you are getting more answers.

Has the GI office recommended a switch in her EN formula? Sorry if you already mentioned that. Seems like maybe her tummy aches could be from allergy to something in one of those formulas.

This is all a process and I know as you learn more about Eosinophilic disease you will learn what works for Grace. She is so lucky to have you for a mommy.

I just wish this process was easier. (((((Hugs))))))
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01-19-2013, 12:16 PM   #26
Farmwife
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Johnnysmom, The GI nurse said the Doctor thought it's disease progressing causing the problems not the formula. I think though IF things don't improve I might ask to switch for a month trail.


We had to have the nurse make an emergency visit.
Her tube connector stretched out and was leaking. She put a new tube in (POOR GRACE). When she took it out it was black and red. The nurse said that stomach acid could do that but...she' let the GI know that. She said it will be more proof to the GI that things are still going on.

The good news is Grace bounced back a lot quicker and she gained another pound since Monday.

Monday is Grace's birthday.
My baby is going to be 4
She asked for princess gloves. Ya know, to match her Cinderella dress. That's my girly girl!
01-19-2013, 01:20 PM   #27
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Yay for another pound gained!!

Water aerobics sounds like a great idea. I did a class late in my first pregnancy and it felt so good not to have all the pressure on my joints.

Happy early birthday, princess Grace!!
01-20-2013, 07:47 AM   #28
Farmwife
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Day number two of little to no pain for her. YA!
I'm hoping the EN is starting to make a difference.
I think that would be the best birthday present for her tomorrow a day of no pains.
01-20-2013, 12:17 PM   #29
Jmrogers4
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So happy for Grace
01-20-2013, 05:40 PM   #30
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Yay for less pain!! Just wanted to wish the princess a very happy birthday for tomorrow! Hope she has a lovely day
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