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Farm Girl and IBD and Eosinophilic Disease

Farmwife

Farmwife

New day, new dx and a new start. I'm ready!:rosette2:


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


Two diseases. Grace has always been talented.:cool:

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.:thumleft:




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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Lewiss mum

Lewiss mum

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
 
Sascot

Sascot

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?
 
Jmrogers4

Jmrogers4

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)
 
Farmwife

Farmwife

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.
 
xSophiexx

xSophiexx

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
 
Jmrogers4

Jmrogers4

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)
 
Farmwife

Farmwife

xSophiexx said:
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
Click to expand...
xSophiexx

:rosette1:Well prune my magnolia's. Your as sweet as a sugared peach!:heart:
Ya just made my friends list.:medal1:
 
xSophiexx

xSophiexx

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
 
my little penguin

my little penguin

Moderator
Staff member
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.kidswithfoodallergies.org/displayForumTopic/content/3682717251713964
 
Farmwife

Farmwife

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.
 
C

crohnsinct

Well-known member
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.
 
Farmwife

Farmwife

Crohn's "without" proof. :ack:
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.
 
Farmwife

Farmwife

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.:(:rof:
 
C

crohnsinct

Well-known member
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:shifty: But too far for me to travel for mommy and me so I sufferred.

Good luck!
 
Farmwife

Farmwife

Well...this pool is 20 by 30. Water kept at 98-100 degrees.:dance: 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.
:shifty:As for me, I shall be a drift on a float, drinking OJ and pretending I'm anywhere but here!!!:dance: I wonder if they'll let me put up a couple fake palm trees with a hammock?:rof:
 
polly13

polly13

Location
Tipperary, Ireland
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
 
Tesscorm

Tesscorm

Moderator
Staff member
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. :ghug:

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 :heart: :Karl: :heart:
 
Sascot

Sascot

That water aerobics therapy sounds great. Something that is enjoyable and helps Grace - what more could you ask for :)
 
DustyKat

DustyKat

Super Moderator
Oh Farmwife...:ghug:...your poor little princess...:hug: 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! :lol:

In my thoughts hun. :heart:
Dusty. xxx
 
Johnnysmom

Johnnysmom

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.:heart:

I just wish this process was easier. (((((Hugs))))))
 
Farmwife

Farmwife

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.


:ywow: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.:ybiggrin:

:heart::heart:Monday is Grace's birthday.:heart::heart:
My baby is going to be 4:ywow:
She asked for princess gloves. Ya know, to match her Cinderella dress.;) That's my girly girl!:rosette1:
 
Tink572

Tink572

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!! :ptiara:
 
Farmwife

Farmwife

:thumright:Day number two of little to no pain for her. YA!:thumleft:
I'm hoping the EN is starting to make a difference.:shifty-t:
I think that would be the best birthday present for her tomorrow a day of no pains.:rosette1:
 
Sascot

Sascot

Yay for less pain!! Just wanted to wish the princess a very happy birthday for tomorrow! Hope she has a lovely day :rosette1:
 
jmckinley

jmckinley

:bdayparty:

Happy Birthday Princess Grace!

FW...now I want to go to the pool! We have one of those indoor warm, therapeutic pools too! I'd forgotten how calming it was for Ryan. May need to do that in the next few weeks. He's having a stressful time now with All-State band competition coming up. Might be a surprise for him!

I just have to tell you I am so sorry about the double diagnosis. I am glad though that you can get started on a treatment plan. I know it's going to be a long road ahead, but I know you are up it. You're a great Mom! Hugs and kisses to you and Grace!
 
Suzysu

Suzysu

Hi,

Havent had time to read all the thread - just wanted to give you guys another big hug!! and of course to say HAPPY BIRTHDAY GRACE!! xxxxxxxxxxxxxxxxxx
 
Farmwife

Farmwife

Thanks everyone!:rosette2:

:thumright:It wasn't pain free day for Grace but she's had a lot of fun so far.:thumleft:

Of all the stuff we bought for her and did for her:yfrown:, it's the balloons that she playing with the most.:ylol:
 
Farmwife

Farmwife

Grace had bad knee pain the morning of her b-day but was great the rest of the day.:thumleft:
She slept through the night! YA!!!!! No pains during the day and now blood in her stool.:yfrown:

Her new GP called just to called and check in. :thumright:SHE'S AWESOME!!!! I told her. I said I want to wait until another BM to make sure it wasn't a one time thing before calling the GI :)cool:living in denial).

I'm wondering if it's not IBD this time. :shifty-t:I think I'm going to switch formulas to see if that makes a difference. I need to learn to tell the two apart in symptoms. Right now I feel if their's blood with no pains that day, it's Eosinophilic Disease (EGID's). Pain during the day and blood in the stool that it's IBD related.:shifty-t: Sorry just thinking out loud.

The new GP wants her to start VLS probiotics and omega 3. She's been reading up on IBD (love her) and says this will help her body and hopefully help the EN do it's thing.

Good night y'all. It was -2 this morning and the wind chill was near minus -20. The day warmed up to a balmy 4 degrees F. I shall go cuddle with the kids and watch Tinker Bell and the Secrete of the Wings for the...I've lost counts.:yfrown: And every time Grace gets worried that Tinker Bell's wing won't heal.:rosette2:
 
my little penguin

my little penguin

Moderator
Staff member
Be carefully with the probiotics - grace is not average Ibd kid.
Anything she takes by mouth including drugs and supplements need to checked and rechecked - some drugs have lactose some have corn derivatives etc....
I would verify with the companies and check with the Gi .
Even Tylenol need to be ordered as a compound due to the corn for some kids with egids.

The wrong intake in the mouth could cause her to flare with egids .
Sorry the learning curve it very steep with both diseases .
 
Crohn's Mom

Crohn's Mom

Moderator
Even Tylenol need to be ordered as a compound due to the corn for some kids with egids
Click to expand...
Tylenol has corn in it ???
Seriously ?? UGGH !

Did you know Zyrtec also has corn in it ?
An allergy med...made with corn...Gab has an allergy to corn !
We started (years ago) her on Zyrtec to try and control her daily hives outbreak; it got much worse. I couldn't figure it out, so I started researching and bingo ! Corn is in Zyrtec.

Of course the Tylenol thing is bothering me, because she only takes Tylenol for fever and pain and not nsaids (obviously).
Would you mind linking me something to this MLP ?
You know how we all love your linking ! LOL

( sorry for hijacking FW!)
 
Farmwife

Farmwife

No problem T. :rosette2:Now let me say it!


CORN IN TYLENOL. ARE YOU KIDDING ME!!!!!!!!!!!!!:mad2:
So I've been reflecting back on her life and all the food I've taken her off for awhile and guess what made the biggest differents:cool:.........CORN!!!!! Of course it all came back worse than ever, even with no corn of any kind.
For 4 months at 2 yrs. old she was completely symptom free. GREAT!!!!! I'll look up the VLS right now.

Grace is going on the 30th to a new Allergist. I ask if he has experience with EGID's and the nurse said yes.:rosette1:
 
my little penguin

my little penguin

Moderator
Staff member
Citric acid can be derived from corn as can xantham gum.

FW the problem you have now is you don't know her egid triggers and taking vsl daily could give you high EOS on your next scope so you would think she didn't clear formula only when she may have but for the vsl kwim.
 
Crohn's Mom

Crohn's Mom

Moderator
Thanks MLP ~ and yes, we are all too familiar with high fructose corn syrup, and it's derivative names unfortunately :/

I was just feeling too lazy to google myself ! LOL
 
Farmwife

Farmwife

Well I told them what she has and they will be testing her during the appointment. Now Grace had the prick test before. Over 20 different foods, 10 allergens. Nothing showed up not even milk. Of course we never imagen these would be her dx's either. GOOD THING!
 
Sascot

Sascot

Glad to hear Grace had a good birthday. Have to say I have always loved balloons myself! Love those Tinkerbell movies - tried to go to the last one in the cinema but missed it with all the hospital stuff. I am hoping it will come to the kids showing on a Sunday - it won't be long until Amy won't go with me anymore! She's too busy enjoying watching men with their shirts off :yfrown:, like Jacob in Twilight. Dreading her going into teenagehood!
 
Farmwife

Farmwife

Thanks Sascot. How many Tinker Bell movie's are there? BTW, first thing this morning Grace ask for the movie again! Please how many movies are there


Dexky,
Please I would be lost with out mlp, my bubble popper.

MLP,
Guess what Splash has in it??????? Can ya guess?????? Come on, guess...... CORN SYRUP.

No call from Devos yesterday. I will be calling and changing the drinks.
 
Farmwife

Farmwife

OK now confused. How can they change the corn into something that's "safe". Wait, I don't want to know. Still I think a change in formula is a good thing.
 
Farmwife

Farmwife

Wow MLP, that cool that they can do stuff like that.

Have a good work day.

Ya, I guess I should go shovel the foot of snow off my car in 5 degree weather.
I can't wait till the kids are old enough to do that.:ylol:
 
Jmrogers4

Jmrogers4

Yep 2 degrees here, we are supposed to warm up to 30 tomorrow, I have a feeling that might feel downright tropical!
It sure is nice that the boys are old enough to go shovel snow, certainly saves my back and arms especially since the hubby leaves for work at 5 am.
Hope Grace is having a good day!
 
Tesscorm

Tesscorm

Moderator
Staff member
Yep, just as cold here! Brrr!!!

Farmwife, just wanted to say Grace is lucky to have you!!! Haven't said much as I haven't had much of value to contribute... :) but, I can imagine it's quite a challenge to figure out the symptoms, signs, treatments for two diagnosis! You're doing a great job getting through it all and learning it all over again! :thumright: :hug: :thumleft:
 
Farmwife

Farmwife

:angry-banghead:Well it's official. Grace will be on the feeding tube for the foreseeable future.:frown: This is because of the Eosinophilic disease.:frown:

Earlier in the week I called the GI nurse and said how unhappy we are not to have a plan for Grace. Also I said the GI NEVER :yfrown:told us her new dx's. We had to hear second hand and how I had to look up myself and find out what EGID's is (thanks MLP).The nurse said she would let the GI know are concerns.

So the same GI nurse called today and read what the GI said,

Her Action Plan.....
Stay on EN until the our next meeting. (March 20th)
At the appointment we will discuss re-scoping to check for EOS's in the track and disease progression of her IBD. Also talk about future meds.
However, IF she starts to get worse we can make an appointment sooner to discuss med options then.


Grace had her first dose of Donatal.:frown: Worked good. She selpt fine and no pains.:thumleft:
I hate that she needs a med to make that happen now.:thumbdown:
 
Tesscorm

Tesscorm

Moderator
Staff member
I am sorry that you will have some rough times ahead until everything settles. I know nothing about EGIS but I do hope that Grace can be feeling good, soon, once treatment is stable. :heart:

How is she coping with EN? Not formula-wise but in dealing with not having food?

:ghug:
 
Farmwife

Farmwife

You know what Tesscorm.:thumleft: She doesn't ask at ALL! She sits at meal time and colors.
At think this kid was sicker than even I knew and hid it too well.:frown: So loves to flush out her tube. She know how to take her back pack on and off with out pulling the feeding tube. She even knows how to push her IV tower/castle with out getting tangles up.
 
jmckinley

jmckinley

Wow! What an amazing little angel you have. It's amazing their ability to cope with what they have to do to get well. I don't adjust nearly as well as Ryan does. I hope you are adjusting too. I know March is such a long time, but if she feels better its worth it. It's just right around the corner. I can't believe its almost the end of January already!

Hang in there!
 
Jmrogers4

Jmrogers4

Yes March will be here before you know it and that gives the EN time to let her heal. So good healing sleep and lots of nutrition and she will be feeling great!
 
EthanClark

EthanClark

FW-I am also sorry to hear of your new diagnosis. One disease is enough. :mad2:Clark also doesn't even ask for food. He is feeling so much better that I think he understands that he needs his special milk! He likes to help flush his tube, poor the milk in and prime the tube. He knows how to run the whole machine. When Grandma watch him he explained to her that she was doing it wrong and showed her the right way. LOL Smart little boy:ycool: We just hit our month mark and had to retube last night. It was still hard and he cried a little but was much easier than the first two times. He has two months left on EN and then we will decide where to go from there. I am crossing my fingers that this will give him a lot of time of being healthy. I am sure we will use EN throughout his childhood as it has had amazing results thus far. Good luck to Grace and I hope she continues to improve :kiss:
 
Susan2

Susan2

I've said it before, and I shall probably say it again, I think that the kids on this Forum are amazing - and their parents are pretty wonderful, too. :thumright:
 
Susan2

Susan2

Farmwife said:
Grace had her first dose of Donatal.:frown: Worked good. She selpt fine and no pains.:thumleft:
I hate that she needs a med to make that happen now.:thumbdown:
Click to expand...
Just a little bit of totally useless information. Three of the four ingredients in Donnatal are from plants in the Solanaceae family. This is a very large family of plants, including potatoes, tomatoes, capsicums, the nightshades and Petunias.

It is thought that the name might have come from the Latin verb solari, meaning "to soothe". This presumably refers to soothing properties of some members of the family.
 
kimmidwife

kimmidwife

FW,
Just sending hugs and support your and Graces way. I am hoping the EN will have her feeling much better quickly. She really does sound like a smart little cookie. They really amaze us don't they?
 
Farmwife

Farmwife

Thanks Susan2,
Your kind words always brighten our day (or night).

That's interesting about Donatal. I like useless info. It always make me feel smarter.:thumright:

However, MLP...did I just do a boo-boo by giving her this when I know she's allergic to tomatoes???:shifty-t:
 
Susan2

Susan2

Farmwife said:
Thanks Susan2,
Your kind words always brighten our day (or night).

That's interesting about Donatal. I like useless info. It always make me feel smarter.:thumright:

However, MLP...did I just do a boo-boo by giving her this when I know she's allergic to tomatoes???:shifty-t:
Click to expand...
No, don't worry about it. The bit of the plant that's used in the drug is not the bit that she's allergic to; it's been extracted
 
Farmwife

Farmwife

Susan2
Oh good. I know it seems crazy but now I have to question everything. This dual dx is going to be NO FUN for either of us!
 
my little penguin

my little penguin

Moderator
Staff member
Did the Gi prescribe the med Or the ped ???
Anything you use even over the counter needs to be approved by the Gi .
Hugs

Fwiw medical grade lactose ( milk derivative ) is not suppose to cause issues but has for some kids - so check with your Gi before you give anything ;)
 
Farmwife

Farmwife

MLP the GI gave the prescription. That's why I didn't even think about it. It's for her cramping and the nurse said it might help with her joint pains. I hope so.

My hubby brought up a question. With Grace being on EN full time, will anything show up on her allergy testing? Will we just be getting false negatives?
 
my little penguin

my little penguin

Moderator
Staff member
Allergy testing is not changed by being on EN.
Read the starter guide to food allergies in my siggy on KFA
Has all the testing info
Also look at the resource section (kfa) on there is goes into detail
On allergy testing
 
Farmwife

Farmwife

Update:

Feeling good:thumleft: except some belly pains.

So today bright green poo and a little blood. Any ideas?
She's on strict EN. Water is her only freebie.

This week is her new allergist appointment. Also the GP will do labs. She just wanted to see if the allergist wanted blood draws too.

I'm want to see what her LDH is at.:cool: I hate this!

How can she be approving in some areas and still have problems in others?:yfrown:

Today is church and that always does us good.:rosette2:
 
Sascot

Sascot

Glad Grace is doing mainly ok and sleeping well on the meds. Sounds like she is getting to be a pro at dealing with the NG tube! No idea on the blood and green poo, sorry.
Ah Tinkerbell, as far as I am aware there are 3 others - Tinkerbell, Tinkerbell and the Lost Treasure and Tinkerbell and the Great Fairy Rescue. I enjoyed all of them :thumleft:
 
Farmwife

Farmwife

Thanks Sascot, we bought the lost Treasure. I have to say I like the wings one better.
The trolls scared Grace! :cool:The rats scared my boy! At least they didn't make me check under there bed.:thumleft:
 
H

happy

Hi Farmwife ,
I had dark green when I was on EN. I also think that bright green can mean that the digestion is too fast. Sorry, I just have a minute--perhaps googling 'bile' and 'rapid transit time' will provide some info.
 
Farmwife

Farmwife

Thanks happy,
You reminded me that Grace had a smallish amount of a BLUE slushy. This is the ONLY freebie she's had (I know,:ack: my bad).
Since she had blood in her stool the next day I guess that won't be given again.
Grace has green stool for the most part anyways.
This was BRIGHT. I'm use to her pooping the rainbow but since EN it's been brown.
Thanks:heart:
 
Lewiss mum

Lewiss mum

just catching up on your thread . gracie is such a little superstar . im glad the en seems to be working and shes coping with it all . what a brilliant mummy u r if u.d of not pushed for her dx u would still be wondering . heres to all the mums and dads who no there kids better than the docs and the normal blood tests .lolxxx
 
poppets mum

poppets mum

:rosette1:I couldn't agree more :rosette1: I am so impressed Farmwife by how well you have handled this whole thing. Grace couldn't have a better mummy:thumright:
 
Farmwife

Farmwife

Thanks poppets mum and Lewis,s mum and every one.

I know the good Lord will get us through everything but I have to admit
I still feel like I'm in a bit of a fog over the whole thing.
For some reason, her having 2 dx's when her GI was sure she didn't even have one has left me a bit of a fog.
I want to think the GI is wrong about her having EGID's but he isn't the kind of GI just to dx with something he's not sure about.
I just hate to think she has a dx (EGID"S) that's going to complicate her other dx (IBD).
Does that make sense?;)
Sorry just whining a bit.:frown:

I'll get over it and try to find my bubble.:ack:
 
Jmrogers4

Jmrogers4

Somebody needs to make these bubbles stronger. Can I have a titanium bubble please?
Tell Grace only unicorns are allowed to have rainbow colored poo
 
CarolinAlaska

CarolinAlaska

Holding It Together
Hi Farmwife, wow, what a journey you've been on the past couple weeks. I see the learning curve and how much you've had to process. Your little girl is such a trooper and I love your stories about things she's said and how she responds to the EN or other kids' remarks. So hard trying to figure it all out when labels are not clear and we're not sure what is doing what. Soon you'll have the right combination and she'll find healing and you'll be able to relax a little.

Lots of hugs and prayers for you both.:heart::heart::heart:
 
Johnnysmom

Johnnysmom

FW,

If I know Dr. K he is busy gathering information about EGID's to try and help Grace. I think he would be the type of Dr. that would admit if he is not experienced in that area and direct you to what hospital and Dr. to go to and help you get there. He was always very honest with us when he didn't have expertise in a certain area. I know there must be so many unanswered questions but I know you will be an expert in no time at all. And Grace will on the right track too.

(((((Hugs))))))
 
my little penguin

my little penguin

Moderator
Staff member
FW
Sorry about the blood.
My fingers scolding ......only shakes, water , shaved ice .....
I know its hard but you don't want to have to start over again for the scope and EOS or end up giving a med she doesn't need because of a treat.
Gi had us treat DS's EEN just like we did his food allergy - even a tiny bit could kill him- when we put it in that prospective - no cheating.
Ok I know you have been hard enough on your self -
So more hugs but stick to the plan and things will work out well in the end.
 
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