# Farm Girl and IBD and Eosinophilic Disease



## 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.

 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.


----------



## 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

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

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

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

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

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

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


xSophiexx

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


----------



## 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

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


----------



## my little penguin

http://www.naspghan.org/user-assets/Documents/pdf/Meeting materials/TIGERS Consensus.pdf

You will need this


----------



## my little penguin

http://apfed.org/drupal/drupal/sites/default/files/2011_CR_update_summary_final.pdf

And this


----------



## my little penguin

http://apfed.org/drupal/drupal/index.php
And this


----------



## 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.


----------



## crohnsinct

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

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

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:


----------



## crohnsinct

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

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:


----------



## my little penguin

Enjoy
Regular pool very cold
Therapy pools at the y at least are really warm and small


----------



## polly13

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

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

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


----------



## DustyKat

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

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

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

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!! tiara:


----------



## Farmwife

:thumrightay 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:


----------



## Jmrogers4

:dance::dance:
So happy for Grace


----------



## Sascot

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


----------



## kimmidwife

Hope she has a very happy birthday! Glad to hear she is doing better!


----------



## Susan2

From Australia.


----------



## 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!


----------



## Catherine

Happy birthday Grace


----------



## Stephyjane

HAPPY BIRTHDAY GRACE xxx


----------



## upsetmom

HAPPY BIRTHDAY GRACE...:bdayparty:


----------



## polly13

Happy birthday grace hope you have a good one. Lots of love from ireland


----------



## 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


----------



## Momto2girls

Happy birthday to Grace!! Hope it is a great day!


----------



## Tink572

Happy, happy birthday, Grace!!:birthday2:


----------



## Tesscorm

:queen: :queen:  HAPPY BIRTHDAY PRINCESS!!!  :queen:  :queen:

:bdayparty:


----------



## Clash

:bdaypartyrincess Grace!!!


----------



## crohnsinct

HAPPY BIRTHDAY GRACIE!  I hope they are spoiling the pants off you!


----------



## EthanClark

Happy Birthday Princess Grace. We wish you a fun filled day with NO pain. :dance:


----------



## Sascot

:birthday2:  Have a fab birthday Grace!


----------



## 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:


----------



## my little penguin

Happy BirthdaY !!!!
GRACE


----------



## Johnnysmom

Happy Birthday Ms. Grace!!!  

You are a princess tiara:

:birthday2:


----------



## Jmrogers4

Happy Birthday Princess Grace :bdayparty:


----------



## 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

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

> Even Tylenol need to be ordered as a compound due to the corn for some kids with egids


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

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.........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:


----------



## Crohn's Mom

If she's going to a new allergist, I would absolutely insist on allergy testing via skin and blood !
:hug:


----------



## my little penguin

Egids are mixed IgE so allergy tests can be used as a guide for treatment but are not then end some do rast and spt some do patch as well.

Here T
Google
https://www.google.com/search?q=tylenol+corn+allergy&ie=UTF-8&oe=UTF-8&hl=en&client=safari
Tylenol has corn syrup - a derivative of corn .


----------



## my little penguin

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

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

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!


----------



## Dexky

Good luck FW!  May I just say how glad I am MLP is in your corner!


----------



## 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

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.


----------



## my little penguin

Splash is different .
The corn in it does not cause an allergic reaction

It is not the same as what is found in cereal
She


----------



## my little penguin

She could be reacting to the flavoring

The corn is not an issue - amino acid
Broken down 
See website


----------



## 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

Flavoring? Wow, this could get complicated.


----------



## my little penguin

http://www.neocate.com/blog/neocate-and-corn-allergies/


----------



## my little penguin

It is very complicated 
Please ask the ladies on KFA
Work calls


----------



## 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

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

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

: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

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

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

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

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

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

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

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:


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

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

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

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:


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

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

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

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

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

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. 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

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

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


----------



## 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.


----------



## happy

Hi Farmwife,
This article talks about blue food dyes found in Pedialyte and also abnormal transit times as causes of bright green stool:http://www.pediatricsconsultantlive.com/display/article/1803329/11021

And this one talks about transit time: http://www.mayoclinic.com/health/stool-color/AN00772

Hope you get some answers soon so that you have one less thing to worry about.


----------



## 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:


----------



## Suzysu

Just wanting to send hugs xxxx


----------



## Farmwife

Thanks Suzysu,
How's Freddy?


----------



## 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

: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

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

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

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

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

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.


----------



## Farmwife

:ybiggrin:Yes mother MLP, BTW it's not hard. She's not asking for food, we just gave it as a treat because we wanted to. We won't do it again I promise!:ack: THANKS!



Johnnysmom,:heart:
I do believe your right about Dr. K. The GI nurse said something about working with Cincinnati. So I think that means he follows their protocol?

I just wish her knee pains would go away. I don't know which is causing her pains.:frown:


----------



## CarolinAlaska

Farmwife said:


> :ybiggrin:Yes mother MLP, BTW it's not hard. She's not asking for food, we just gave it as a treat because we wanted to. We won't do it again I promise!:ack: THANKS!
> 
> 
> 
> Johnnysmom,:heart:
> I do believe your right about Dr. K. The GI nurse said something about working with Cincinnati. So I think that means he follows their protocol?
> 
> I just wish her knee pains would go away. I don't know which is causing her pains.:frown:


Farm Wife, for what it is worth, we use geranium essential oil on J's knees when they get flared up and have had very good results.  The inflammation is usually gone less than an hour and doesn't come back that day...


----------



## Suzysu

FW _ I cant remember are you due to see a rheumy? I thought you were but the appointment is a long way off? can you try to get on a cancellation list or get your Dr to hurry things up a little?
Carolin - great tip about the essential oil - Do you mix the essential oil with a base oil or just apply direct? and how much do you use?
Do your little ones have obvious inflammation, swelling, heat round the knee joints or just pain. Freddy often complains of knee pain but I cant really see that they are massively inflammed or swollen.
Hope Grace gets some relief soon xxxx


----------



## Dexky

FW, There's an old guy on my route with severe arthritis who swears by Australian Dream Cream.  All I know about it is it's some sort of emu oil salve.  It could be complete hoakum but you'd never convince him.


----------



## Susan2

Goanna Oil is the classic Aussie cure for everything.


----------



## Farmwife

Too funny!:ybiggrin:
We all have creams that work. I have one that is natural oils. I love it. Works great for me but not for Grace.
I bought some tiger balm type rub for her. Works fine but doesn't help how often they come.:frown:
Her apt. is the :heart: 14th of Feb.:heart: with the Rheumy. 
That is an emergency appointment.

I was looking at my symptom journal and it seems like this is the pattern for her. A few days of joint pain and then a few days with none. 
:thumright:I least I feel better that they slushy didn't do it. 
:ysmileON'T WORRY MLP, I STILL WON'T GIVE HER ANY MORE!:ack:

Off for the day! The last week of weather was -10 with lots of snow and icy. Today 50 plus with everything melting and sloppy with a deep freeze and 10 degree weather by tonight into tomorrow. :medal1:
WELCOME TO MICHIGAN, USA!
It's the state where even if you wanted to leave the weather won't let you.:soledance:
:biggrin: Ask QueenGothel, she'll tell you I'm right!


----------



## jmckinley

Just checking in on you and Grace. Sorry you are having to deal with 2 dx's but I am so glad that you kept pushing for an answer. And Grace, WOW! What a trooper! She is an amazing little girl to deal with this so well. Hugs Princess Grace! And Hugs Mom!

What you said about the EN is funny. I noticed when Ryan was on it that he stopped wanting food and was satisfied. But because I was hungry, I wanted to give him food!


----------



## jmckinley

Jmrogers4 said:


> Tell Grace only unicorns are allowed to have rainbow colored poo





https://www.facebook.com/?ref=logo#...94247898&set=o.229020663797027&type=1&theater

:rof::rof::rof:


----------



## CarolinAlaska

Suzysu said:


> FW _ I cant remember are you due to see a rheumy? I thought you were but the appointment is a long way off? can you try to get on a cancellation list or get your Dr to hurry things up a little?
> Carolin - great tip about the essential oil - Do you mix the essential oil with a base oil or just apply direct? and how much do you use?
> Do your little ones have obvious inflammation, swelling, heat round the knee joints or just pain. Freddy often complains of knee pain but I cant really see that they are massively inflammed or swollen.
> Hope Grace gets some relief soon xxxx


She gets pain in the knee joints and when it is bad it is swollen, but not usually red or hot.  I use the geranium straight without a carrier oil, but sometimes other oils need to be diluted, depending on what it is.  I use one or two drops right on the area of pain.


----------



## Farmwife

Suzysu, Her pains hit in the joint. Never any heat or swelling of the joint.

:medal1:RIGHT.......tell Grace that unicorns poo the rainbow and she'll be trying to eat crayons to make her poo do that.:soledance:


----------



## Suzysu

I don't think crayons are allowed on EN??????? xxxx


----------



## Farmwife

Suzysu said:


> I don't think crayons are allowed on EN??????? xxxx


:ytongue:And this is way we're NOT telling her unicorns can poop the rainbow!:biggrin:


----------



## Suzysu




----------



## CarolinAlaska

:biggrin:


----------



## Farmwife

Itchy Skin?????

Do your kids get itchy skin? It's really bother Grace. This is new for her and I've been applying lotion like crazy but it doesn't seems to help. Just wondering?

She has her first new allergist appointment tomorrow. That will be a good question for him too.

Poor Grace has to get pricked all over again. Last time they tested her for some many thing it filled most of her back. I'm not looking forward to this.


----------



## my little penguin

Has she been off Zyrtec and zantac?
Zantac is morning of a skin prick test ( spt)?


----------



## Farmwife

I asked about the Zantac and the she said it's fine for her still to be on.

Why could you not give Zantac the morning of?:frown:
She gets it twice a day.


----------



## kimmidwife

Few,
Someone just told me to try arnica cream for the joint pain. We haven't tried it yet but next time Caitlyn complains I will try it. I know it is great for bruises and other aches and pains.


----------



## my little penguin

Zantac is an H2 blocker .which reduces histamine release.
Nevermind some allergists have you stop morning of for spt some not.
Only time you have to stop not matter what is for a food challenge.


----------



## Farmwife

Sounds good. I'll give it to her when we get home.
Thankfully it's an early morning appointment. THANKS!:thumright:

I'm just curious why my forum friend knows more than an allergist secretary?:ybiggrin:


----------



## Tesscorm

Re the itchy skin...  it could be the weather.  Both my daughter and I get itchy skin every winter!! :ymad:  My skin doesn't look dry or flaky but it does feel itchy.  I don't notice it as much during the day but the itchiness (especially back but also arms, legs) does bother me before bed or a bit after a hot bath.  I'm sure it's the weather (dry/heated air at home, etc.) because it only happens during the middle of winter.


----------



## Susan2

This is probably teaching a mother to suck eggs, but with a child on medication and who has allergies, you need to be very careful of the skin lotion that you use. No perfumes, as few additives as possible.


----------



## Farmwife

Thanks Susan2,
I've always use lotion but only organic/natural. I will keep an eye on it.

Tess I too get dry skin but this is the first for Grace. I put the lotion on her and we have a humidifier. 
Oh well, in the whole scheme of things, dry skin is nothing.:thumright:



:soledance:


----------



## my little penguin

Actually organic and natural tends to cause more problems in atopic kids
Since they tend to have proteins from plants in them - typically listed in scientific name
So you could be putting milk on her skin etc...
Food labeling laws do not apply to cosmetic, drugs or meat poultry etc...
So your out of luck there . Just have to call
Aveeno baby used to break DS out due to oats - who knew 
-vanicream or cerave are the two brands most atopic kids can use.
For DS the itch was an chronic inflammation of the skin.
Due to perioral dermititis and ezcema .
Hope the allergist has answers.


----------



## CarolinAlaska

kimmidwife said:


> Few,
> Someone just told me to try arnica cream for the joint pain. We haven't tried it yet but next time Caitlyn complains I will try it. I know it is great for bruises and other aches and pains.


Let us know how it works...


----------



## Catherine

My youngest has problem with sunscreens.  She reacts worse to the ones for sensitive skin.

We do better with the zinc based ones.


----------



## Suzysu

Good luck at the allergist - hope they can help her with her skin xx


----------



## Farmwife

WHEAT, CORN , EGG AND BEEF!

That's what she's allergic to. I can deal with the last one. She's never liked beef,              
 but how in the world am I supposed feed this kid?   
Also, his two sons have the same disease (EGID) as Grace just in a different spot and his other son has a BAD corn allergy.  
I loved this guy. I wish I would have gone to him from the start.
I told him the whole story of Grace and he said we should have NEVER been put through all this.
So over all very happy!        

MLP, don't be surprised if you read the same words on the other forum.


----------



## Catherine

By all egg do you mean chicken eggs or all eggs.

Because there are also duck, or goose eggs etc.


----------



## Farmwife

I don't know.
I've never seen duck or goose eggs for sale up here.


----------



## my little penguin

All eggs cross react
Wheat corn egg beef
Easy
No issues
The Gi will probably have her go free of
Milk egg wheat nuts peanuts fish soy shellfish as well
Just be prepared
The KFA ladies can help you when you get to adding food - no worries
But you have to look at what you do have 
To trial at least 
All grains - trust me alot there
Veggies
Turkey chicken
Potatoes 
Anything more than sugar is alot for an egid kid.
Grieve for a while it takes time .


----------



## my little penguin

Energ-g egg replaced will work but she will have to trial each ingredient first .
Same with rice , sorghum , potato , tapioca flour
Plus discuss with your allergist and Gi positive allergy test without IgE reactions may not be egid triggers . Water gets very muddy there .


----------



## happy

Not to minimize the lifestyle changes that you are facing but--Yay! Now you know what to avoid and her healing journey can finally start!

I cannot tolerate wheat, corn or beef. I do consume eggs, but I have made many recipes without them. I suggest that you get a subscription to Living Without Magazine and Allergic Living. They both have really good info, substitutions and resources for living with food intolerances and allergies. And the articles are short enough that you won't get overwhelmed.

I would also suggest looking at the blog by Sarah M. Boudreau-Romano, http://theallergistmom.com. She is a medical doctor who became a pediatrician specializing in allergy/immunology. Now she is raising three children who have life-threatening food allergies, so you can trust her info and suggestions. HOWEVER, DON"T view her blog right now. Unfortunately, a child has recently died from an allergic reaction and reading about that might be a bit much right now.

Take some time to adjust to this new info. I just have food intolerances which are difficult enough to deal with--true food allergies can be life threatening and living with that reality is very stressful, especially as you are just beginning to learn how to adapt to this new reality. :hug:


----------



## Jmrogers4

Glad you got some answers and you can move another step forward sons like a great Doc


----------



## Farmwife

Thanks happy for the links.

I guess the Allergist said her reactions "skin pricks" to Wheat, eggs and corn are considered substantial. Took up a big portion of her back. Beef was minimal but still there. What shocks me is no reaction to milk and soy. WEIRD!

The doc said over the coming months she'll be test for more. 
He is also doing a RAST test.


----------



## Sascot

Glad the appointment went well.  Was wracking my brain for food ideas, but most had either egg or wheat in them.  I know most supermarkets are quite good at having wheat free flour now, so maybe you could find some core recipes that she will enjoy.  :ysmile:


----------



## Tesscorm

Just hugs FW!!! :ghug:  :ghug:  :ghug:  It may seem overwhelming but the more you learn and as you see Grace feeling better, things will get a bit easier...  I wish I could actually help you with some real advice but am sending lots of hugs and wishes for you and Grace. :hug:


----------



## Catherine

At least you now have a starting point and time to think about first meals while still doing EN.

Good luck.


----------



## my little penguin

Sounds like the allergist is on top of. Something's are positive via rast and some via spt.
Some are positive but not true allergies . DS has alot of those -
He tests positive to wheat corn oats barley peanuts soy and tree nuts ....
But only has a true allergy to tree nuts.
Don't worry the allergist sounds like a keeper and will help you figure it all out.
With more testing don't be surprised honestly if she adds more to the list most egid kids have a very long list but with trials and in office food challenges that can be whittled down.


----------



## my little penguin

http://community.kidswithfoodallerg...t/12834099281672119/reply/lastReply#lastReply


Read this FW 
Discusses pitfalls of testing too much spt/rast for egid kids


----------



## Farmwife

:rosette1:HA!!! I read that already!!! I beat you to it MLP! WOW, is this what it's like to be you? COOL!:medal1:

Hears another question. 
When I was drilling the Allergist about the dx of EGE I asked him if he thought it was that or just because of her IBD.
 He stated that it was EGE because notice in her stomach and the next part (sorry forget the name) she has elevated eos's but no "signs" of IBD. But he said he's not a GI, just a dad with 2 son's with EoE. well in my book he's very knowledgeable.


----------



## Tesscorm

Farmwife said:


> :rosette1:HA!!! I read that already!!! I beat you to it MLP! WOW, is this what it's like to be you? COOL!:medal1:


LMAO  :rof: :rof:


----------



## CarolinAlaska

Hugs, FW!  New learning curve ball coming your way!  Good luck sleeping tonight  !  You'll soon find a new norm in your cooking and shopping, and then life will settle down again.  Does this mean that Grace will need a new EN formula or is your current one good?  I'm so glad you got a good allergist.


----------



## izzi'smom

Wow. Catching up and sending you loads of love, mama...you have been trhough it lately!! So glad to hear you have some answers and hoping that finding out about the allergies will help you to move forward with a clear treatment plan. :heart: 
Not that you have any spare time, but Food, inc makes a lot of interesting points regarding corn and the myriad of corn products out there today, and how our bodies (and cows) aren't made to digest it.


----------



## Farmwife

So this is a good day to vent for all of us.

Grace is still struggling with her feeds. Some days she can get the full amount in a timely matter and other days it might be a 16 hr feed because of her saying she's full or hurts her belly.

So talk to GI nurse and the GI still says we can wait until March to meet
 (even though in an early conversation he said he thinks it's do to disease progressing) 
and hopefully it will straighten out by then. 
The nurse was happy to hear that Grace can drink 1-3 cans on her own. Then the idea was to see if she can drink the whole amount on her own and if she can't, give it in the tube at night. Soooooooo maybe.

 I'm thinking of taking the tube out during the day but I don't know if it would be to much for Grace????

On the bright side, Grace's Cinderella baby doll now has a feeding tube with a heart stickers that matches her.:biggrin:


----------



## Tesscorm

Is she asking to remove the tube during the day?  If it's not bothering her too much, I would leave it in.  I think you might be opening a can of worms...

I don't know how easy it would be for Grace to have the tube inserted every day (or even how easy it would be for you to do...) and, if you're thinking of leaving her without it during the day and inserting each night, you may run into problems some evening when she's not feeling well, is cranky, etc. and won't let you insert it...

Now, with the tube in, if she doesn't drink the formula and even if she's cranky at any time, once she's asleep, you can just start the feed.

Just my thoughts... :ghug:


----------



## Jmrogers4

Yeah ^^^^ same here


----------



## Farmwife

Yeah I know your right but...... my bubble was calling me!:frown:

BTW, hubby just said...ARE YOU CRAZY!
 His gentle way of saying no, the tube has to stay. 
I wish I could put a tube in his nose, it would make meal time so much easier.


----------



## EthanClark

FW-I would try the feeds at night to see if that helps. I agree that trying to reinsert the tube every night might be way to hard. We start Clarks feeds around 8pm at night. Run 3 cans at 100ml for 7 1/2 hours then add the two remaining in the middle of the night. He has not complained of every being too full or belly pain. It is a kind of a pain to have to wake up and flush the tubes and add the other two cans every night but it is worth it because he feels so much better. When it comes around to about the time to feed again he usually asks us to get his special milk ready for him. It makes it alot easier to not have to worry about the tower during the day(we havent even opened the backpack up yet) He is so active now that I think it would make feeding throughout the day alot harder. Good Luck:ysmile:


----------



## Farmwife

Thanks, Grace does ware her back pack but she doesn't seem to mind it at all.
I think tonight I will switch over to night feeds and see how it goes.
 She can do about 3 a day by mouth and I'll do 3 at night by the tube.


----------



## Tesscorm

Farmwife said:


> I wish I could put a tube in his nose, it would make meal time so much easier.


:lol:
My friend, whose daughter has crohns, has four kids and a very dependent husband ...  her daughter did EEN for six weeks and I remember my friend saying...  meal time would be so much easier if everyone was fed the same way! :ywow:

I sometimes feel guilty that there's a 'good side' to the EN via NG but, truly, my worries about Stephen's nutrition have lessened ENORMOUSLY!!  It's cut down on my nagging by, at least, 60%!  :lol:


I think that's a good plan FW - 3 by day, 3 by night...  And if she only does 2 by day, then you can just increase the nightly feed without any stress!


----------



## poppets mum

I would leave tube in as much as possible. It took us over 3 hours to get it back into our kid. Accompanied by pleading,begging and rewards offered by us. Hiding,crying and  I hate you, by her. Almost considered the prednisone at that point.


----------



## Niks

Your Grace sounds amazing!!  She's doing really well drinking some by herself.

:highfive::highfive::highfive::highfive:


----------



## polly13

Just checking in you are all amazing - btw allergist sounds like a keeper too


----------



## Momto2girls

Glad you found a good allergist!! We have egg and tree nuts. We are also doing some more testing later this month -- suspecting corn as well. We'll see! Good luck!!


----------



## Farmwife

Why do we worry? Does this EVER end? Will I ever be able to relax?

Grace had labs yesterday. I call GP nurse and asked if they were in and she said yes but the doc will need to see these first. UMMMMM OK I said and then ended the call.

First, the nurse has always given me the test before the doc sees them. The doc herself said that's more than OK. Did she change her mind? Or is there something on this test. 

I won't find out till Monday. GREAT! The whole week-end. Sorry just whinning!:boring:


----------



## Jmrogers4

We'll worry right along with you.  I'm sure everything is fine otherwise doc would have called right?


----------



## my little penguin

Yeah that ^^^^
Really bad labs are flagged and you get a fast call
The doc just might want to discuss stuff as well


----------



## Farmwife

Doc is NOT in until Monday but I'm sure I would have heard something
_* because as we all know medical staff always keep you in the loop. uh-oh!*_


----------



## my little penguin

Trust me if it was bad they would get ahold of the doc or a doc covering for her.
We have been called an hour after labs have been drawn by the Gi before .
Breathe it will be ok


----------



## Farmwife

Normal GP ordered it not the GI. She wanted her CBC and LDH checked again.
You just reminded me that the allergist also ordered. OHHHH, I'll be back later..................


----------



## Farmwife

Never mind they closed at 4. SHOOT! Oh well time to learn patience!


----------



## my little penguin

https://itunes.apple.com/us/app/eoe-tracker-app/id477324767?mt=8

EoE app
Just for you when your DH gets you that fancy phone


----------



## Catherine

If labs are really bad the doctor call themselves.

We had a hospital er call once.  Call went something this:

ER: urine test is not clear, you need to take your daughter to her doctor.
Me:  I make an appointment
ER: no you,need to go now, we will ring the doctor and tell him what write to script for.

When we arrives at the doctors the receptionist was trying to call us


----------



## polly13

Oh farm wife the worry doesn't go away but slowly as you go through this journey you will learn to breathe again. I agree with everybody else if there was anything to really worry about in the bloods the doc would have called. Have a good weekend


----------



## CarolinAlaska

At some point we just have to choose to believe the best.  That is easy to say now but at 4 oclock in the morning when our subconscious mind wants all the answers, it isn't so easy... Hang in there!  We're here with you!


----------



## Farmwife

Thanks we all need to think on the positive so I have some good news........
:medal1::soledance::rosette1::thumright:
GRACE DRANK BY HERSELF FIVE JUICE BOXES OF HER EN TODAY!!!!!!!!!

:medal1::soledance::rosette1::thumright:


So I'm off for the week-end. Potluck at chruch and a week-end of preparing the food for an hour of eating on Sunday!

Since Grace can't eat :frown:at the potluck my Pastor's family is going to pick up balloons for Grace to have and play with. SWEET!:heart:


----------



## CarolinAlaska

That sounds great.  Getting your mind off the labs and keeping busy will help.  I'm so glad Grace is being cooperative!  My J only drank one Ensure so far today (goal=4).  She's never reached goal!


----------



## Farmwife

Show her the pic of Grace and say this little girl just put you to shame!:ybiggrin:


----------



## CarolinAlaska

Farmwife said:


> Show her the pic of Grace and say this little girl just put you to shame!:ybiggrin:


I will!


----------



## CarolinAlaska

Jaedyn says, "yes I have!" (reached goal of 4 - maybe once?) "but it is easy for her because little kids like sweet things.  I don't like sweet things!"


----------



## Tesscorm

Try not to worry!!  I agree with all above, if it was serious, they would certainly call you. I'm glad you're keeping busy this weekend!!!  That'll help! :ghug:

And WOOHOO Grace!!!  :banana:


----------



## kimmidwife

Just Catching up so glad to hear you have some answers. There is a great egg replacer you can buy at whole foods or other health food store several of my vegan friends use it. Meanwhile you have gotten some great advice. Take it day by day. I have a close friend whose daughter had similar allergies when she was young and has mostly grown out of all of them. Hopefully Grace will be the same way.


----------



## Sascot

Hope you are having a nice weekend.  That's fab that Grace is managing to drink her Ensure!  Hope they ring nice and early on Monday so you don't have to worry about results too long :biggrin:


----------



## Farmwife

Sascot said:


> Hope you are having a nice weekend.  That's fab that Grace is managing to drink her Ensure!  Hope they ring nice and early on Monday so you don't have to worry about results too long :biggrin:




Are week-end is going good. No pain for Grace for a few days now. YA!

Sascot :heart:I wish nothing more then for her to out grow but Eosinophilic disease (EGID) BUT isn't that kind of allergy. Her easinphilia (a type of white blood cell) turns on what it thinks is the "enemy". They don't know why it does this but when it turns to "kill" the enemy it's really turning on types of food n the track and destroying with it's toxins part of her track at the same time. The GOOD news is once you find the foods or triggers it stops the process. The BAD news it can take years and some poor people can never find all of them and have to live on EN or at least supplement with it. Our concern at this point is to get a handle on what's causing what? The might take a good long while.


----------



## happy

Farmwife,
I'm reading a terrific book that might be helpful for you when Grace is able to try eating again. The book is "Learning to Bake Allergen-Free; A Crash Course for Busy Parents On Baking without Wheat, Gluten, Dairy, Eggs, Soy or Nuts".

I haven't tried to make any of the recipes yet, but they look promising. The author's son has Eosinophilic Esophagitis and wasn't diagnosed until age 10.

Perhaps it will be helpful to you.


----------



## QueenGothel

Farmwife said:


> Are week-end is going good. No pain for Grace for a few days now. YA!
> 
> Sascot :heart:I wish nothing more then for her to out grow but Eosinophilic disease (EGID) BUT isn't that kind of allergy. Her easinphilia (a type of white blood cell) turns on what it thinks is the "enemy". They don't know why it does this but when it turns to "kill" the enemy it's really turning on types of food n the track and destroying with it's toxins part of her track at the same time. The GOOD news is once you find the foods or triggers it stops the process. The BAD news it can take years and some poor people can never find all of them and have to live on EN or at least supplement with it. Our concern at this point is to get a handle on what's causing what? The might take a good long while.


So EGID is auto immune???  I wonder if LDN would work for it??? Just thinking out loud here. It having minimal side effects and all. Ver curious, I will do some research or have you already?


----------



## my little penguin

Egid is not auto immune
It is an allergic disorder of the gut.
Currently there is no cure or meds except pred.


----------



## my little penguin

http://apfed.org/drupal/drupal/index.php


----------



## Sascot

Hope you are having a good week so far :ysmile:


----------



## Farmwife

So hear it is four in the morning and I need my voices of reason (y'all) to keep me calm.

Grace had her first water therapy yesterday. She had so much fun. It blessed my heart to see her laughing and being a 4 yr. old.
 The therapist was great and Grace was telling one and all she was Tinker Bell water ferry. VERY CUTE!

Soooooo yesterday afternoon her right arm starting shooting pains and now it's also in her right leg. :ywow:
This is new for her on the whole right side. So her right side is hurting enough she's asking for mommy to stop it. Nothing is helping. 

Also her constipation is picked right back up and she's being fed with the pump again because the last two days she went from drinking 5 cartons to two. Her joint pain flared up before the swimming time.

Her Rheumy apt. is next Thursday but they won't deal with you until you see them for the first time.

I'll be calling her GP at 9:00 to see what she says. I don't think the GI will do much in this case but I will inform them too.

The good news is....we DID get that Children's Special Insurance of Michigan. So now it's ALL covered. YA!!!!

Still haven't heard about her labs. I guess I feel if they showed something I would have heard but still annoyed they the haven't rang yet.


SO PLEASE TYPING CALMING WORDS AND WHAT"S HAPPENING IS BECAUSE OF HER THERAPY!:ybiggrin:

Sorry I haven't been on lately but I still lurk when I can.:wink: HUGS, I'll update when I can.:heart:


----------



## Catherine

Your little one was sick for a long time.  This just a bump in the road.


----------



## upsetmom

Breathe FW everything will be alright.....:hug:

Hopefully it was from the therapy.

Have you tried giving her pain killers?


----------



## Farmwife

QueenGothel said:


> I wonder if LDN would work for it??? QUOTE]
> 
> 
> 
> 
> :ybiggrin::wink::biggrin: Yup, already on the path!
> 
> 
> Grace seems to over the pain for know. Still going to try to get answers.
> Thanks all!:heart:


----------



## CarolinAlaska

Yes, definitely the therapy stirred up some inflammation in her joints.  We found a novel trick to help Jae with her joint pains associated with her Crohn's:  Cypress essential oil applied topically.  Both times it happened and we tried it, it relieved the pain within about 20 minutes.  The nice thing about essential oils, I hear, is that they don't have the antigen carrying proteins that cause allergic reactions.

Hugs to you, Mama, for grace and ongoing endurance in this race set before you.


----------



## Jmrogers4

Bump in the road, we know your lurking but have so much on your plate right now it is perfectly understandable but please update when you can we love to hear about Princess Cinderella-Tinker Bell Fairy Grace


----------



## Sascot

Sorry to hear about the pains.  It's probably just because she did an exercise her body isn't used too, hope it settles on it's own soon.  That's really good news about the insurance.  Glad you're still lurking!  Not much help I'm afraid, the only thing I was ever told to do for sore joints was a warm bath.


----------



## Farmwife

Come on Rhuemmy appointment!:yrolleyes:

Tonight, yet again, Grace's ankles and right arm are hurting her. I did the heating pad and gave her meds. She's sleeping now. I can't wait till next Thursday. I hope she gets some answers.
 Her GP wasn't in and her secatary told me the GP hasn't even looked at the labs yet. Grrrrrrrrr!:ymad:
 Oh well I'm in Lala land until I hear other wise. See in Lala land no one has needles.:luigi: Sorry MLP!


----------



## Farmwife

Oh and to top the day off...her brother was running thought the house and caught his arm around sister's tube and....:ywow:.....pulled it right off her face and out of her nose. So tomorrow the nurse is coming over to put it back in. Plus the adhesive on the tape is causing sores when we take it off. 


On the bright side she told me she missed her tube!:biggrin:


----------



## Dexky

Ugh!  The poor girl!


----------



## QueenGothel

Make sure they use some detachall to remove the tape.


----------



## Farmwife

QueenGothel said:


> Make sure they use some detachall to remove the tape.


Thanks, I've never heard of that.
They gave me a barrier gel to put on before we put the tape on. She says it itches and doesn't seem to make a difference yet.


----------



## Jmrogers4

Oh poor Grace, only one week to go for rhuemy


----------



## Johnnysmom

It's a good thing Grace is so cute, most people have to wait a lot longer for that rheumy appointment.


----------



## Farmwife

Johnnysmom said:


> It's a good thing Grace is so cute, most people have to wait a lot longer for that rheumy appointment.


Thank you,
 I won't lie it's kind of nice in stores, when they see Grace with the tube and let us go to the front of the line. 
Shameful I know.


----------



## Tesscorm

Farmwife said:


> Oh and to top the day off...her brother was running thought the house and caught his arm around sister's tube and....:ywow:.....pulled it right off her face and out of her nose.


I can just imagine the uproar that must have caused at home!!   Poor thing! 

Sorry about the pain!!   I hope it lessens and that you get some answers on Thursday!  :hug:


----------



## my little penguin

Farmwife said:


> Thank you,
> I won't lie it's kind of nice in stores, when they see Grace with the tube and let us go to the front of the line.
> Shameful I know.


BTDT only during an EEG test  ( 3 days) :ack:
the looks we got. You think he had the plague.


----------



## CarolinAlaska

Oh, I cringe at the thought of that tube being pulled out so abruptly and uncarefully!  Makes me wince!  I won't even mention it to Jae...I think her own trauma having to do with NG tubes is too fresh!  Interesting that Grace is so attached to her tube...

I saw a blog post about how someone used duoderm and tegaderm on their baby's face for an NG tube to get it to stick without hurting their skin.  Does your Grace get any of those little animal stickers for NG tubes?  They're so cute!


----------



## QueenGothel

It is actually spelled detachol, you can probably order it through her medequip or whereever you are getting her medical supplies.


----------



## Farmwife

Sorry, if your happy don't read the next part because I'm in a downer kinda of mood. SORRY AGAIN!

Just put Grace to bed with bad left ankle pain. She's sleeping for now.
 The nurse came out and put her tube in again. :frown:
The nutritionist called from Devos. I told her Grace has back off her feeds again. 
Her belly pain is picking up and now her butt hurts and going to the bathroom has become slightly painful again. :angry-banghead:
Also the last two n-g tubes after being removed were dark brown to black at the ends. Any thoughts from anyone? The nutritionist had no idea why. She said she'll talk to the GI.

She did talk about a g-tube.:ywow: I said the GI needs to nail down what is her dx...crohns or UC. If it's UC then fine, put the peg in but crohn's, that scare me. :ack:
Oh she lost 2 lbs. BUMMER!

 I'll cheer up soon.:wink: I just need a good night of sleep and Grace to be pain free.


----------



## Jmrogers4

Sorry no answers about the tube.  Get some rest tomorrow is another day with hopeful a better feeling Grace and some more answers (((HUGS)))


----------



## Tesscorm

Farmwife, I can't remember but did the scopes mention any specific inflammation/ulcer in Grace's stomach or esophagus??  I'm just wondering if there is just a little bit of bleeding in those areas that is turning the NG tube brown/black?  When she's vomited, has there ever been a tiny amount blood?  Certainly don't want to worry you with something new, I'm seriously just throwing this out there...

Hate to hear she's always having pains   I hope you both get a good night's sleep! :hug:


----------



## Johnnysmom

((((((Hugs)))))) Farmwife.

I can only tell you that right after Johnny's diagnosis as we started treatment we had many down days.  Weird side effects, ER visits, pain, vomiting, strange rashes, emergency blood draws and on and on.  I think unfortunately it is part of this process.  I think the GI's stay the course a little longer than what we moms would like because most often it ends up working.  Two steps forward, one step back.

If you feel like Grace is having more bad days than good days or if she seems worse than what she was before diagnosis I would push the Dr. for a change in his recommendations.  Of course you know her better and know when to say something.  I just wanted you to know our experience.  Hang in there you are both doing great and I have no doubt soon Grace will be feeling a lot better.


----------



## crohnsinct

Black on or in the tube...this was a whole discussion a while back.  I am drawing a blank on who it was...anyone care to help an old lady out.  

She backed off her feeds?  Did I fall asleep and miss something?  I thought she loved her tube and was missing it after it got ripped out of her (I still get quezzy thinking about that).  

Lost 2 pounds 

Is prednisone still an option?  Are you about ready to try that at this point?  I know how much we all love to hate prednisone but poor pumpkin has been sick for so long.  Maybe it is time?


----------



## happy

:hug:


----------



## Dexky

I hope you hear from your GI soon FW!  It seems to me losing two pounds with a feeding tube in should prompt serious action.  You need definite answers and Grace needs treatment that is working for her!  Good luck!


----------



## Sascot

That's a shame she is getting worse again.  Wishing the rhuemy appt would hurry up - bet we would all love to rush time along as we watch our kiddies suffer before being seen/having tests.
As for the tube - how often are you flushing the tube?  Not sure about the pump - Andrew was just fed one "meal" at a time, but we flushed the tube with a syringe full of cooled boiled water every time (so 5 or 6 times a day).  His tube was clean when it came out.
Sending hugs!! :hug:


----------



## Farmwife

Feeling happier today. :ybiggrin:YA! Good night of sleep.

No phone call today from GP. I've called three times this week. I'm shocked since she's the doc that calls out of the blue to ask how Grace is. Why not pick up the phone and say the labs look good? Grrrrrrrrr!

After nap Grace woke up in severe pain. She was doubled over and screaming that her tummy hurt and then her knees where hurting to. The whole thing lasted a half an hour or so. It went away on it's own. She use to do this multible times a day, a year or so ago. It kind of stopped. I hate this whole thing.

crohnsinct I'm not against pred at all. At the beginning of her dx's the GI warned that we need to be careful on how much we use it because for her eos disease, pred is the only known treatment for it other than EEN. MLP correct me if I'm wrong. However he was assuming as we were that EEN would do the trick of bringing everything under control.

So I'll see how the week end goes and call on Monday. Tonight her throat is hurting and her knees.

On a brighter note Grace caught her tube before she ripped it out.:ywow:


----------



## my little penguin

Your right but ....
Some kids need a little steriods to calm down the inflammation and then the EEN takes over and keeps the body from forming more EOS/inflammation .
Depends on the kid.
Fwiw DS used to double over in pain prior to dx and even when he wasn't in remission .
But in other drugs.
I would inform the Gi about the pain .
How many weeks has she been no foods 6????


----------



## Farmwife

Thanks MLP but I thought when you take the "trigger foods" away that the eos start to leave. Then is remission achieved for that disease, RIGHT? 
She's been on EN for a whole month. Her problems seem to be picking up, not leaving. Again I'm not against using pred.

As I'm type this I'm considering taking her to the ER. Belly, joint and now throat pain is getting bad and no meds are helping. I'll see what the GI on-call has to say. The throat is perplexing. The pain comes and goes. Acid reflex. infection, virus....who knows??????

I'll update when I can.

Have a good week-end everyone.:heart:


----------



## happy

Hi Farmwife,
Something to consider is the possibility that something in the formula is bothering her. Just going on the liquid diet may have settled things down initially. However, if there is a trigger in the formula it might not have shown up for awhile because of how broken-down the food is, and it may have taken until now before she reacted to it. 

It might be worth switching to another formula while you try to sort out further treatment for her. You would need a dietician with experience with formulas to help you choose a different one.

May Grace soon be well.:hug:


----------



## Lewiss mum

hope gracie is o.k and the pain has settled such a worry when they have pain and theres nothing u can do big hugs.xx


----------



## my little penguin

> Elimination of foods implicated by skin testing has variable effects, but resolution of symptoms can sometimes be achieved with amino acid–based elemental diets.
> 
> Supportive treatment with pharmacotherapy, mainly oral glucocorticosteroids, is indicated for those with obstructive symptoms.
> Patients with mucosal layer involvement may benefit from anti-inflammatory medications (eg, oral glucocorticoids, oral cromolyn) and/or diet elimination therapy, particularly if they report a history of food intolerance or allergy.
> Drugs, such as montelukast, ketotifen, suplatast tosilate, and mycophenolate mofetil (inosine monophosphate dehydrogenase inhibitor), and alternative Chinese medicines have been advocated but are generally not successful.


From






> Oral glucocorticosteroids with anti-inflammatory properties are the primary therapy, especially for patients with obstructive symptoms and eosinophilic ascites. Most patients with eosinophilic gastroenteritis respond dramatically to oral glucocorticosteroids within 2 months. Successful treatment with other anti-inflammatory medications, such as leukotriene modifiers (eg, montelukast) and mast cell stabilizers (eg, cromolyn), has been reported


http://emedicine.medscape.com/article/174100-medication#showall

FW EGE is different than EoE .
EoE responds better to pure elemental than EGE .
See above
Reality is it is even rarer than EoE 
You may want to try neocate unflavored or elecare vanilla
I would push to see 
Bch
Chop
Or 
Cincy

It can take 6 weeks to reach remission 
Fwiw 
For DS with just Ibd and not like grace ( Ibd + EGE)
He still had way too many issues in EEN .
Hope she gets some relief soon


----------



## Sascot

Poor Grace, hope she has managed to settle without a trip to the ER.  I was also thinking along the lines of an allergy to something within this formula.  Definately worth asking to try another one.  There was a little boy in the ward last time I was in hospital who had to try 3 different EN liquids before finding one that didn't react.


----------



## jmckinley

So so sorry that Grace is having such pain. I wish you guys could catch a break.

On the throat pain, could it be the Crohn's flaring up? Ryan gets pain in his throat when he is starting to flare. It is either ulcers or inflammation with him. I know his scope at dx showed ulcers there.

I hope that she is resting tonight and that you are also. Hugs! and more Hugs!


----------



## polly13

Hope grace I'd ok farmwife


----------



## Farmwife

Hi everyone. I feel so out of the loop since I'm not around all the time. 

Grace's update isn't a happy one so please use discretion upon reading.

On Sunday after the service Grace was rushed to my arms and my hubby said she's in pain with her belly. She was passing out because it was so bad. I got her home (next time I will go to the ER but we only live a short distance from our church) and gave her the Donnatal and with in the half an hour she was fine.
 Her belly pain was back up under her rib on the right side. 
Her joint pain is NOW in her right wrist. 
She had green liquid poo and LOTS of mucus with is. More pain as she pushes now. This is so scary how fast her pain is spreading. :ywow:
I don't understand how she can have a dx and still go down hill. 

Called her GI nurse and with in an hour she called back and said the GI wants to wait for us to see the rheumy and see what he says. The GI thinks it a possibilities that she has inflammation from her joints (possible arthritis) pain that's causing the slow up in the healing process. 

I forgot to ask to change her formula. I'll do that tomorrow. I do think that the throat pain is back up from the stomach or intestines. The scope showed NO DAMAGE in her upper scope. So where is the back up coming from? They've already raised her Zantac a few times. How many time can they do this?

The good side is tomorrow is her pool time. She's looking forward to that and my hubby will be taking her so I can have some mommy time with my son.
Of course on the bad side I'm already bracing for a major flare after she comes home. Well at least when we go on Thursday to see the rheumy she be in full flare.


muppet and crohnsinct how do you survive the storm? I was thinking of you guys when I saw the pics on the news. Did anyone else get hit?


----------



## Momto2girls

I am SO sorry! How scary!! I sure hope she's doing OK. So surprising to me that the GI wouldn't want to check for a blockage or something? With pain that severe? I sure hope she enjoys her swim. I remember it was just at the start of the summer last year that Gracie got on the medicine that helped her feel better AND she just love love loved swimming -- it was a great summer. Feeling good and playing like a fish!


----------



## Tesscorm

Poor, poor Grace!!!   What is the GI's plan?  How long will Grace be on EEN without improvement before the GI decides to make a change?  Either in the formula (I know you forgot to ask but the GI could have suggested it also) or in moving to meds?

Can inflammation in the joints affect GI symptoms?  I know the reverse is common but I've just never heard of joint inflammation causing GI problems???

Her throat pain could be relate to the NG tube...  first, the tube itself could be irritating her throat.  The other thing is we were told the only reason Stephen needs nexium is because when he inserts the tube, the tube leave the 'flap' (sorry, don't know medical term! :redface between the esophagus and stomach open allowing acid to move up the esophagus.  As Stephen removes his tube each morning, this is only an issue at night (same with tube causing irritation), but in Grace's case, she may have acid moving up into the esophagus all the time.

To try to alleviate the acid issue, perhaps ask her ped or GI if you can pull the tube out 0.5 or 1 inch and tape it at that length when she's not having formula (so that the tube isn't actually reaching into her stomach)... perhaps that would help block any acid.  Don't do this without checking!!!...  it's just a *GUESS *on my part that it might help if acid is the problem.

:ghug:


----------



## Farmwife

I can hostly say, I have no idea why the docs do or don't do anything. She's not "sick" she's not "suffering" between her bouts of pains. She still has more good times then bad so far. I just want Thursday to get here.


----------



## Farmwife

Hi Tess, Grace will be on EN for some time. The GI wants to give it to March when we meet with him to discuss the next step. The nurse did says that the tricky part is trying to figure out what could be causing what. The nurse said we need to call after her next BM.


----------



## Tesscorm

I just hope you start to see more improvement in her!  I just feel so badly for her, still having these on-again, off-again pains!  But, I'm glad she's having more good than bad times! :Karl:


----------



## Jmrogers4

I'm so sorry farmwife what a scary day!  I was thinking same thing as Tesscorm about acid backing up, don't have any advice about the rest of it just hope she gets some relief soon.


----------



## CarolinAlaska

I'm sorry she had such a bad bout of pain - passing out from it!  Sheesh.  I'm glad things are moving through and that it was relieved with donnatal.  <<<<<Big hugs>>>>>  Regarding the arthritis... I don't follow that thinking either, perhaps the nurse misunderstood.  Maybe he just wants to wait to make any treatment decisions based on whether he is going to be treating an arthritic condition too.


----------



## my little penguin

:hug::hug:

Sorry she is feeling badly still.
I "think" the Gi is holding off on adding treatment because what he adds could effect the test results the Rheumo may need to do.
Hope Thursday gets here quickly .


----------



## crohnsinct

Sorry FW no advice...but a question...did she gain back those two pounds lost.  Did you tell the GI about  that?!  

As for us and the storm I have two words for ya...National Guardsmen!!!!!  That's right...the strong, strapping, young men in uniform paid us another visit.  Mother nature is definitely a woman! 

30" in one dump here.  My daughter got 40" and wait what is that I hear? Dang!  A front loader is dumping more snow on the corner where I just spent 4 hours clearing the sidewalk.  I running out there with my rolling pin now!!!!!!


----------



## Sascot

So sorry that Grace is getting so much pain. Just have to send lots of healing thoughts your way since I don't have any advice. Hope she has a good time swimming!


----------



## Farmwife

Physician Assistant??????

I guess that's who were seeing on Thursday for her first rheumy appointment.
Is a PA as good as the doc? Or will she see us and then refer us to the doc?I know it sounds bad but I'm a little annoyed that it's not the rheumy but his PA!

crohnsinct she gained back all but 1lb.:ysmile: 

She had a great time swimming today.:soledance:
 Her joints are sore and 
her belly abdominal pain showed up and then she went poo and it left......what does that tell ya?

Have a good night y'all. crohnsinct I'm glad our national guard was able to keep you safe and warm. Is that why you gave the hubby a snowblower out of guilt??????:wink:


----------



## Crohn's Mom

FW Gab mostly see's the Nurse Practitioner when we go to the GI's office, and the PA when we see her kidney doctor.  We rarely see the actual doc 
I'm sure it would be more comforting on first visit to see the actual Rheumy, but sometimes the PA's and NP's and such are so much more willing to spend the time and listen to details and what not 

As a matter of fact, when we went to the dermatologist at Mayo clinic for her MRSA infection, and skin issues, we have still yet to meet the actual doctor...only the PA LOL.

Best of luck tho!


----------



## crohnsinct

Yeah I would say Physician's Assistants are as good as docs (especially given a few of them are here on the forum)....as long as they know when they need to escalate to the doc.  I have been in many a PA's office and had them tell me to wait while they got the doc.  I also as a general rule find they take more time with you and listen.  But I guess it is the same as anything..there are good ones and bad ones so you just have to go in with an open mind and see. 

Um guilt..yeah o.k.. At one point hubby and I were out there shoveling and a truck load of the boys went by and they beeped and waved.  Hubby just laughed and asked if I could use my influence to get them to finish the job:ytongue: Silly man...all it takes is food and cookies!


----------



## Tesscorm

And promises of a snowblower!


----------



## my little penguin

Second the first appt for a complicated kid should not be with a PA.
We have good exp with follow up  an NP for Neuro after we saw the actual neurologist.

Bad exp with the derm PA. Which was a first appt.
Ds had too many issues and we left with too many questions.

If its a teaching hospital it may be different
Our Rheumo has a fellow do the first appt spends an hour or more 
Then attending comes in with medical student to review the history.
Another hour .
Follow up with just Rheumo 15 minutes.

You can always schedule follow up with just the doc 
That is what we do 

Good luck


----------



## kimmidwife

Fw
A lot of times you will see the PA and then the doctor but if they are telling you the appt is with the PA that means you are probably seeing him and not the doctor. Hopefully he will consult with the doctor once he finds this is beyond his scope of practice.


----------



## CarolinAlaska

:ytongue: Im not sure my opinion would be unbiased regarding the PA...  You'll have to wait and see how it goes.  It depends on the PA and his/her experience in the field...


----------



## Farmwife

Good news her WBC is the highest it's been a year and a half.:soledance:
Bad news is her LDH is still climbing AGAIN!

:rosette1:Good news is her GP is willing to write out LDN if her GI won't.
Bad news is she wants to wait a bit longer for us to try a few supplements again.
 I'm more than ok with that because we are holistic in nature BUT NOT IF Grace is getting worse. 

Good news is Grace is having a good couple days. YA!:rosette1:
Bad news is she is more energetic and driving me crazy!


:heart::heart::heart:


----------



## Jmrogers4

Yay for Princess Grace.  Glad she is running her kingdom again even though I feel bad for her servant.
That is great that he is open to giving LDN a try.


----------



## QueenGothel

Hey WBC going up is good news! Glad I hope everything else starts evening out too!  :rosette1:


----------



## Sascot

:dance: Yay for little princesses driving their mommy nuts being energetic!  Nice to know she's feeling a little better :ysmile:


----------



## Tesscorm

Glad she's feeling better!!!!  :banana:  :banana:


----------



## crohnsinct

Poor sad FW!  Honey you were already crazy don't pin that on innocent little Gracie. 

LDN?  Is that for the IBD or is it also a treatment for the EOS?


----------



## Farmwife

crohnsinct said:


> LDN?  Is that for the IBD or is it also a treatment for the EOS?



Both IBD and Eos.:medal1:


----------



## CarolinAlaska

Yea for two good days and driving farm-mommy crazy!!


----------



## Suzysu

YAY! that she is having a good couple of days!! and that the WBC's are up!! - lets hope that its the start of something long term!!

Sorry I've not been on much recently - been thinking of you guys though!!

Hugs xxxx


----------



## Johnnysmom

I would be annoyed about the PA too.  Mostly because Grace has a complicated case.  The combo of EOS and IBD and how it might be effecting her joints is going to be an unusual combo for them.   I had a friend who took her son to that Dr. and she said he was able to tell from a physical examination of her son that his joint pain was from his crohn's and not from RA.  She was very impressed with him.  I would just stress with the PA that Grace has suffered far too long with her joint pain and her case is complicated with a lot of unanswered questions.  Maybe they will be able to pull the Dr. in.

Good luck, I am sure either way you will walk away with some questions answered and a plan to help Grace's joint pain.  ((((((Hugs))))))


----------



## Farmwife

What a blessing were going tomorrow!

After her shower she couldn't walk to the couch. Her right foot ached and she asked for meds and a heating pad. WOW! How sad. Something has to be done and soon. I'm afraid she won't be able to walk soon.

I'm still obsessing on her LDH level. WHY???? I asked the GP again about it raising and she said she's glad we're going to the rheumy tomorrow and to make sure to ask them. 
I told my hubby this and he said........arthitis.:ywow:
 Could that be causing the raise all the time. I feel so stupid. Could that be it? Her joint pain has been around since one. I never thought of that.

Oh well we'll find out tomorrow. Have to go pack...everything!

Yes, no one worry I have my rolling pin of defense for the BIG BAD CITY!:wink:
I just wish that hospital were in the middle of farm land.:biggrin:


----------



## Tesscorm

Good luck tomorrow!!!  I hope you get lots of answers, information and plans for going forward!  :ghug:


----------



## my little penguin

Good luck in the am
Hope they can help her.
Be careful with the LDN or any drug 
Not that you don't want to try it 
But your Gi should be the one steering the treatment for her Ibd and EGE 
If not then A . You need a new doc and B drugs the gp prescribes may cause 
An issue or conflict with what the Gi wants her on or to do.
Trust me the more docs involved the harder to get them to agree.


----------



## Jmrogers4

Good Luck tomorrow, update us when you can


----------



## jmckinley

Good Luck tomorrow! Thinking about you guys!


----------



## Sascot

Hope you have an extra big handbag to hide that rolling pin - don't want to scare the doc before he does anything wrong .  Good luck with the appointment, hope you get some answers - and treatment!!!


----------



## Tink572

Good luck at your appointment today!


----------



## QueenGothel

I hope all goes well.  Good luck!


----------



## Suzysu

GOOD LUCK!!!! I hope the real rheumy guy is around as wel as the PA - maybe the PA will take the history and then go get the real rheumy!!

This is totally unconnected but if I don't write it now I will forget!! and I expect you have thought of it already - I still haven't caught up on the whole thread!! - I was just reading a paper on eosinophilic gastrointestinal disorders, and it mentioned an asthma med called Montelukast has been used  to help kids with EIGD's - I really only mention it because middle child is on it for asthma and it has made such a massive difference to him - if the two diseases have similar aetiologies maybe it could help Grace in both the tummy and lung departments?

Anyway I hope you get some good answers tomorrow and some help for poor grace's joints xxxx


----------



## Momto2girls

Good luck!


----------



## AZMOM

Any news FW?


----------



## Farmwife

We're back.

Meant with the PA and then she pulled in the Doctor  and a social worker.:ywow:

He felt all her joints and twisted and turned her bones in ways that upset me.
Grace just laughed at him. He does funny voices for kids.:ysmile:

He said he feels no damage yet. That made him happy and us.:soledance:

He said that he feels that once her IBD and EOS are under control the pains should subside. I knew that already.

He did feel that more action has to be taken but given her complicated case that he will have to check with her GI. He said give him to tonight to talk to the GI personally and for me to call tomorrow and he'll have the next coarse of action (he hopes).

One shocker is Grace is double jointed. He bent her toes back to her leg and it about touched.:ywow: Grace just laughed. The rheumy thought that maybe that's why such bad joint pain but he say her biggest culprit is IBD.

She got home and went poo. Green, mucus and pain. Also last night her belly pains were so bad I turned off her feeds for the night.


On the funny side the RHEUMY told Grace he needed to examine (her arms) and she starts to drop her tights and bend over!:ytongue:


So now I wait, again!:wink:


----------



## my little penguin

Lmao
Too funny
Glad the Rheumo is on top of it.
Also yippee for no damage
Hope the Gi get things in gear finally and gets your little one in a better place.
I know things turned around for DS once we got an extra set of eyes from our Rheumo .
Who also does voices


----------



## Tesscorm

:rof:  You've got a real sweetheart - gorgeous and funny! 

Certainly sounds positive and, as MLP said, maybe this will get things really moving for Grace!


----------



## Farmwife

*Pain AFTER Poo?!?!?*

I think their's been treads about this but I forget.


Grace went poo and after she was done and running around, she started to cry ouch once in a while. She said her but (anus) hurt. The pain is sharp and only last seconds and only happens a dozen or so time and then goes away. This may happen even if the poo causes NO pains.
:heart:
Has this happen to any of your kids?


----------



## Tesscorm

I'm thinking that could be a fissure... after wiping, use Tucks to help clean the area...


----------



## Farmwife

She has no pain when wiping Tesscorm, well at least right now. Could fissure still be causing this?


----------



## Tesscorm

I think it 'might'....  if it's a little cut that's just been pulled open, it might hurt for a few minutes until it settles again???   

I think the Tucks have a soothing ingredient (forget what it is now...)  Also, if it is a fissure, applying a bit of penaten has also helped Stephen.


----------



## Farmwife

Thanks Tesscorm. One more question. Is fissure something you can see or can it be inside the rectum?


----------



## my little penguin

Calmoseptine
Find it in the adult diaper section
At Walgreens
Good for abscesses fissures and normal butt pain
It helps with DS's pain


----------



## Tesscorm

Be careful trying to 'see' it bcz you can tear it more trying to locate it. And, yes, I think it can be inside - in which case I'm not sure that my suggestions wud help...


----------



## CarolinAlaska

I'm glad it went so well!  Funny, and sad too, that Grace was going to drop her tights...


----------



## Suzysu

Glad it all went ok - but didn't he suggest anything for the pain? It's all very well saying that the pains will get better once the IBD is under control - but what about keeping her comfie until then? Freddy has hypermotility too and I was when I was a kid - I remember my knees coming out of place when I knelt in a certain way - it was horrid and painful but thankfully never lasted long with me! xx


----------



## CarolinAlaska

Jaedyn has hypermobility too.  Is it part of the Crohn's syndrome?


----------



## Sascot

That is funny, poor guy must have got a shock! :ybiggrin:  Hope he manages to talk to the GI and get going with something to help all the pains and her tummy!!


----------



## Sascot

It certainly sounds like it could be a little fissure just inside.  Sometimes little cuts can be quite painful. Might be worth putting on a little "nappy cream" afterwards to see if that helps.


----------



## imaboveitall

Violet has hypermobile joints TOO :ywow:
To the point where she dislocates frequently with little provocation. 
She saw the big dog rheumatologist and he said he knew of no connection to IBD but I wonder...?


----------



## AZMOM

Yep. Claire too.


----------



## Farmwife

That's very intersting.

David or a fancy dancy monerator, can y'all do a pole on this?


I'm see all lot of IBD suffers have this.


----------



## Crohn's Mom

Gab's in the club too !


----------



## Tesscorm

Interesting how many of the kids have hypermobility!  I don't believe Stephen has hypermobility; I imagine after all these years in hockey, we would have known by now...


----------



## polly13

Glad the meet went well.  Grace could have a fissure Lucy always has multiple ones and you can't always see them.  Sometimes there will be an external skintag with them but not always.  Try putting a barrier cream on after wiping.  There is also a steroid foam called pro topic but I think the GI would have to prescribe that.  Hope it clears up for her


----------



## EthanClark

FW,
Clark has a fissure on the outside and he is very afraid to poo!! He will only do them at night when we put a diaper on him. He is so afraid that he holds it and complains that it hurts quite a bit. We have to give him miralax every few days because he is holding it so that he can go. When his fissure is hurting he asks us to put vaseline on it and that seems to help it feel better. :ybiggrin:


----------



## Farmwife

Talked to the GI nurse. GI is out till Monday. So the nurse talked to the HEAD of the department. The head GI said that she needs more and a short course of pred might do good but.....she wants to wait until her GI is back to set that up.:yfaint:


Grace seems better. Not as much joint pains. Maybe it will go away by Monday and we wont do pred!:biggrin: Of course I still want to be a size 8.:wink:


----------



## my little penguin

Good luck with that size 8
Hope the pred will do the trick.

No pins included this time


----------



## Sascot

Glad Grace is feeling a bit better.  I would be happy with a size 12 these days


----------



## Farmwife

Oh dearest Sascot, I would be happy with size 12 but I figure if I'm going to dream I might as well dream BIG or small in this case.


Grace had more pain last night. 

_*Here's a question.....
If she does get put on a short course of pred is their still a chance of side effects????*_


----------



## my little penguin

Anytime you take meds there is a risk of side effects .
The longer and higher the dose the greater the risk.
Plus I have learned a Gi short course 6 weeks .
Two weeks at dose then taper 5 mg per week .
Is different than an allergist pred burst ( 5 days) .

Depending on how bad she is short may not be enough.
Good luck


----------



## Farmwife

The rheumy made it sound like a couple weeks. Of course I don't know if he said a couple weeks. I guess I'll find out Monday. So will even a 6 week course show side effect like moon face and such?


----------



## Maree.

Sascot -- UK & US clothes sizes are very different.  American 8 is ~ British 12 ~European 38 ~ Asian Large or XL

I know it's silly but it always makes me feel good when I walk into a shop that has American sizing and they hand me clothes with small size numbers.


----------



## my little penguin

They do that on purpose
The higher the price tag the smaller the size number even though the waist measurement is much higher. :ybiggrin:


----------



## Maree.

Agreed, there seem to be a lot of shops where the sizes don't map to any sort of standard sizing system at all.


----------



## Farmwife

Wow where does the time go????
Today is week 6 of EN. I can't believe it's been 6 weeks already.

I'm off for a few days.
The sun is finally out. It's always so beautiful when the fresh fallen show glistens like diamonds.
Grace is getting some daddy time in town. I'm sending them with a food list. I can't wait to see what a hubby with a sweet tooth and a girl with a fairy fetish will bring home.
My son and I will be cuddled on the couch as he coughs and sneezes. Don't feel to bad. My son has made sure to tell dad he needs MORE choc brownies to heal him up!

I hope and pray everyone stays healthy and happy this weekend.


----------



## Maree.

Have a lovely break.


----------



## Johnnysmom

Enjoy the sunshine!!  Michigan is the most beautiful place in the world to me.

Johnny didn't show any of the Pred side effects unitl about a month into the full dose.  And the benefits to how he was feeling far outweigh the negatives.  Besides if you aren't finding it helps much you can always ask the Dr. to taper sooner.  You should know pretty quickly if it is going to improve her pain.


----------



## Catherine

Sarah has completed 2 courses of pred and we are 3 and 1/2 weeks into 50mg of pred with no side effects other than maybe acne.

I  saying this with all my fingers and toes crossed.


----------



## Farmwife

Grace has gone down hill. FAST, scary fast. 
She can't walk now because of the joint pain. Can't get her n-g tube past 25ml and hour with out causing pain. She can't poo. Is having rectal pains and abdominal.

The head GI called and is going to find a pharmacy to fill her pred NOW. Also test this week

She has 12 hrs to improve and or we feel she needs more care, take her to our ER and or IF we can make it down to Devos.


How fast will pred work????


----------



## Niks

Poor Grace and poor you :ghug:

Really hope she picks up soon.

Usually you can see an improvement with Pred pretty quickly 2-3 days, but not always.  Hopefully it will stop her getting any worse.  Has she had it before?  Do you know what strength?

Thinking of you both xx


----------



## Johnnysmom

For Johnny the difference with Prednisone was immediate.  We gave it to him about 10 am and that day he had a great dinner and more energy.  He slept like a rock that night (we were afraid he wouldn't sleep) and by the next day the blood was gone from his stool, tons of energy and great appetite.  

I hope it works that quickly for Grace too.  (((((Hugs)))))))


----------



## my little penguin

For asthma stuff -24 hours then improvement.
For crohn's stuff a little longer
Hope it helps fast 
If not they can give iv pred at the hospital which works very fast


----------



## AZMOM

Ditto what MLP said. IV works faster. If she can't walk, go to the ER now! You may just mean not walk without pain. 

Id say the days of debating side effects are over. She needs help.....poor little peanut. 

J.


----------



## polly13

Thinking of you and grace for Lucy we saw a difference with the pred after about 5 days


----------



## Twiggy930

Hoping the pred kicks in FAST.  Got my fingers crossed.


----------



## my little penguin

I know it's far but personally if it was ds we would already be in the car heading to devos.
Her doc is there and Grace is a special case.
She needs the experts ASAP


----------



## Jmrogers4

Farmwife, how scary!  Have to agree with MLP I don't know if the pills of pred will work that fast.  It was about 5 days with Jack.  Hope it works fast.


----------



## Tesscorm

Sorry to hear...   I'm with MLP too...  don't waste time at the local ER, if she's that badly off, just go to her doctor directly!  :ghug:


----------



## Farmwife

Grace is resting for now on the couch. I gave her the pred. Also I think Grace has caught the cold virus. This may explain why the fast down hill turn. The HEAD GI of Devos said IF we feel we can wait we can but if it gets to much we can head to the ER. Also she will be talking to her GI on Monday about Grace. So here's to hoping for a quiet night! I pray!


Do any of your kids flare WORSE with a virus?


----------



## my little penguin

When DS was not doing well any little blip caused things to get worse


----------



## Momto2girls

Oh no, I am SO sorry -- gosh, I sure hope you get through the night. But don't hesitate to go if you need to! I'll be thinking of you all.


----------



## Catherine

We also got improvement very quickly with pred, I say within 24-48 hours.  Sarah's first two does of pred were much close together.  I picked up the pred at about 4pm in afternoon the chemist recommend taking in the morning.  Chemist and I discussed timing of the med, the first dose was taken that afternoon about 5pm and the next dose about 8am in the morning.  We then continued the pred in the morning.


----------



## Niks

How is Grace today?  Hope the Pred has kicked in and she's picking up a little

:ghug:


----------



## Farmwife

Second round of pred this morning.
 The on-call GI said to give it again.
She seems a little more talkative. 
She did have some major pains again last night.
She went a little poo this morning with a lot of gas. 
Still she seems a bit more with it.


So in all the stress and worry of yesterday I broke my finger (I think). :ywow:
I can't believe it. We're trying to decide  if we need to make the run to the ER and I hit my figure between the wall and my pain in the butt puppy (now 98 lbs). 
Heard it do something evil and ignored it because of the crisis with Grace.
 SO today I have it splinted and tape and I will wait and see if it will fall off.


So now wait and see. I hope the pred works quick. :heart:


----------



## Niks

Fingers crossed for Grace, have been thinking of you.  Hopefully she is on the up and the Pred kicks in really quickly.

OUCH with your finger!!!  :ywow:

(((hugs))) to you both 



:ghug:


----------



## Farmwife

Thanks Niks, I was happy to read your baby girl is doing a bit better. It's never easy no matter the age.

For the parents with kids with or had n-g tubes. Grace is complaining of her n-g tube hurting. She getting a virus with coughing. Did you take out their n-g tube during the illness? I know your not doctors.


----------



## Momto2girls

SO sorry about your finger! Yikes. Praying today will be a better day for you.


----------



## Farmwife

STOOL, LOTS OF IT!!!! WOW!!!:ywow:

That alone has to make her feel better.:rosette1: I wonder if her BM's will go back to normal?


----------



## my little penguin

Yippee for a good BM
DS tends to do that 24 hours after remicade


----------



## Niks

:ybiggrin:  Fab news!!

Really looks like things are going to be better today x


----------



## dannysmom

Farmwife said:


> Do any of your kids flare WORSE with a virus?


Danny's symptoms are always much worse when he catches a virus.


----------



## AZMOM

Wow! That's a big turnaround!

J.


----------



## Johnnysmom

My friends son had to stop his NG tube because of sinus infections but he would put his in every night.  I am sure it would make her uncomfortable though poor peach!

Will she continue on EN now that she is on Pred?  Does she seem to want real food?  I know Johnny got so hungry on Prednisone that it would have been very hard for him not to eat food.  

Hoping today is a better day, and that finger is ok!


----------



## my little penguin

EEN is probably needed for the EGE .
Even with pred since pred can help with low symptoms of EGE but not from major triggers .
Please ask your Gi about that one .


----------



## Farmwife

Good question AZMOM. It's been 6 wks of EEN. So long enough for IBD. BUT...her Eos is another thing. GI's do things different for EGID's. I'll find out tomorrow. 

Grace is smiling a bit but still having slight leg pains. Her abd. pain is gone. YA!!!!:medal1:
I think I'm starting to like pred!


----------



## Maree.

Fantastic to hear she is feeling so much better.


----------



## AZMOM

She should probably have some sort of PPI to protect her stomach while she's on steroids. We always do. Id add that to your list. 

Im not an expert on eosinophilic disease by any means but my son has EoE so not totally foreign. 

Hope she continues to improve!

Julie


----------



## Jmrogers4

So glad she is feeling better. Yay! for BM's and Yay! for pred which is why we all love it because it works quickly but hate it for the side effects but sometimes that is just what is needed to help them along


----------



## Farmwife

EoE is the same family. Grace has EgE. Eos's are from her stomach to her rectum.
We haven't even started testing trigger foods. We know for sure she can't have corn. But her test showed wheat, eggs and beef. Only 15 things were tested for so we still have a long road.
AZMOM can I ask what they did for your son. Did he go on EN or just to an elimination diet?
How ofter do they scope? Sorry I'm just happy to hear that some one else beside MLP and I know about this.


----------



## QueenGothel

Farmwife said:


> Good question AZMOM. It's been 6 wks of EEN. So long enough for IBD. BUT...her Eos is another thing. GI's do things different for EGID's. I'll find out tomorrow.
> 
> Grace is smiling a bit but still having slight leg pains. Her abd. pain is gone. YA!!!!:medal1:
> I think I'm starting to like pred!


We all liked it in the beginning.  Damn Pred it is that love/hate relationship that comes later. I hope it continues to help but that it isn't the new normal.  Hugs to you momma.  Glad she is feeling a little better.


----------



## AZMOM

Diagnosed 2 scopes ago. Did two months of Flovent swallow. Just rescoped a few weeks ago. Not enough improvement. No food allergies on the skin test. Doing a patch and more blood tests in April. If that's shows a culprit, we eliminate and rescope in 2 months. If it doesn't show the culprit, we eliminate the big 5 and rescope in 2 months. If improved then, it's one at a time adding stuff back with scopes at 2 month intervals. 

That's the short version 

J.


----------



## Dexky

Poor Hunter!!  That's a lot of scoping…and a lot of prepping!!!  Ugh!


----------



## AZMOM

Let me clarify. EoE is UPPER GI only. His stomach and bowel were unremarkable. We're only repeating uppers.


----------



## Dexky

Phew!! So no prepping??  At least no clean-out prepping?


----------



## AZMOM

Nope. Just clear liquids evening before and nothing after midnight


----------



## CarolinAlaska

So glad to hear that the GI symptoms are improving already.  I hope the rest of her symptoms resolve soon too.


----------



## Suzysu

I am in agreement - take her to devo's and get soe IV pred into her.
((((((((((((((((((((((((((HUGS))))))))))))))))))))))))))))))))))))))))))))))


----------



## Suzysu

arrrrg!! - I hate that I don't catch up with the recent post's until I have posted something!!!! - so Hugs for when Grace was really bead - and YAY for her feeling a bit better xxxx


----------



## Sascot

Wow, not sure how I managed to miss so much.  Glad the Pred seems to be helping and Grace managed to get rid of alot of stool!  Good luck with speaking to the GI tomorrow.  Hope your finger is just badly bruised!


----------



## kimmidwife

Glad to hear she is doing a little better. Hope the finger is ok!


----------



## Tesscorm

Glad things are looking better!  

But, ouch on the finger!!!  Hope it's feeling a bit better too!


----------



## Lewiss mum

Hi hunny just wanted to say I think ur a fab mum it's hard deciding to put our kiddies on these mess Ian it u tried really hard with out having to use and no one can day ur not a tryer sometimes it's outa our hands I'm glad grace is feeling a bit better let's hope this gets things under control so she can be a kiddi again .xx big hugs from sunny manchester


----------



## Farmwife

She was up ALL night!!!!! With a cold. That's it!:ybiggrin: No pains! NOTHING! No joint pains! NOTHING!:ysmile: No tummy pains! Nothing!:soledance:

Now going to bed she did have painful hiccups and neck pains but I think we need to up her Zantac or put her on a PPI.

Still I'm very happy.:rosette1:

Today or tomorrow I'll be talking to the GI. I'm not sure what he'll do with the EEN. I hope he agrees to keep her on it and let me start introducing foods one at a time, for a three week stretch.

Have a good few days, everyone. :heart:


----------



## QueenGothel

It been a long time coming Farmwife. I hope she continues to feel good!  :rosette1:


----------



## Farmwife

:medal1:The BIG news...Grace went poo and it was normal and brown.

I can't believe the night and day differences. 48 hrs later, she's playing and keeping up with her brother, laughing all the time, she's in no pain whatsoever.

 I know it's all because of pred but right now my Grace is happy.:wink:

Her GI called and wants to keep her on EEN until we meet in March.
She's on 15ml of pred a day for two weeks and then will step her off 5ml every week.
So if she doesn't get steroid dependent (which he warned me of) she'll be off in 5 weeks.
Mentioned 6-MP:ack: for a possible maintenance drug but we'll cross that bridge later.:ybiggrin:


I just want to thank all you dear people for your advice and support through this trying time.:heart: I know it's far from over but right now I couldn't give a bunch of flying fairies what the future can do. Can you tell I'm tired of Tinker Bell yet!:wink:

On a very personal note....my time on here will be next to nothing for the next couple weeks. Business and personal responsibilities are calling me away.
 Plus some time to wind down and enjoy, however short it may be, the happy little princess/Cinderella/Tinker Bell Water fairy (yes she wants to be called all those) Grace's good health.

Love to all,
FarmWife:soledance:


----------



## Jmrogers4

Enjoy the time with your princess, we'll be here when you need us.  You both deserve some happy time


----------



## my little penguin

Enjoy
Glad you are at that point .


----------



## upsetmom

Enjoy your time away.....anda-wave-t:

Take care.


----------



## Tesscorm

Its so nice to hear Grace is feeling so well!!! :banana:  :banana:

We'll miss you  but am hoping most of your time away will be spent enjoying time with your princess and family!!


----------



## Lewiss mum

whoop whoop for pred . i do that to when the good times are here i try amd forget crohms for a while an remeber were a family and were not a family of crohns if u no what i mean it can take over your life amd when the good times roll we have fun and laugh and we can look forward to the nxt day instead of worrying about how the night time will go .hope she continues to thrive and do well . xx


----------



## Niks

So good to hear your gorgeous Grace is doing so well. Enjoy your time away xx

:ghug:


----------



## Suzysu

HUGS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
so so pleased for all of you that Grace is feeling better!!!! - enjoy your time!! xxxx


----------



## Sascot

Wonderful to hear :yoshijumpjoy:. Enjoy! Will miss you


----------



## Farmwife

Hi everyone!

Quick question?

:soledance:Grace has been doing great on pred BUT the last two days slight belly pain (nothing like before), slight joint pains and her asthma has showed back up. 
Tonight she had blood in her stool. She has one more week BEFORE we start the tapper.
 I will be calling the GI tomorrow. 
Just wondering what this means about the pred? Working or not working? I know your not doctors (most of you:ybiggrin!

Miss y'all. Life is crazy busy but I'll be back soon!:wink:


----------



## my little penguin

They may keep her dose up longer before tapering.
It depends on the Gi 
For DS it meant the pred helped get some if the inflammation down but did not stop it from coming back or needed more time to get rid of more of the inflammation.

It took multiple rounds of pred for DS since our Gi tried the lowest dose for the shortest time possible .


----------



## Dexky

I don't know FW.  Seems odd since pred is often used to treat asthma also.  I hope things settle back down!


----------



## kimmidwife

I second what MLP said. Sometimes it takes several rounds of prednisone or a slightly higher dose for a short time to really kick down that inflamation.


----------



## AZMOM

How much is she on? And how much does she weigh?


----------



## CarolinAlaska

Frustrating .  Does it ever go the way we hope?  Different docs see it different ways... some want the pred to make them symptom free, others give it a one time shot...


----------



## Sascot

No experience with Pred, but in general if something isn't working as well I would think the body has got used to that dose and it isn't as effective anymore.  Maybe a short spurt of a slightly higher dose would help. :ysmile:


----------



## Niks

_Her GI called and wants to keep her on EEN until we meet in March.
She's on 15ml of pred a day for two weeks and then will step her off 5ml every week.
So if she doesn't get steroid dependent (which he warned me of) she'll be off in 5 weeks.
Mentioned 6-MP for a possible maintenance drug but we'll cross that bridge later._

I think check with your GI, but she could go up a little on 15mg.  As MLP said they may wait for a little bit before tapering

:ghug:


----------



## AZMOM

I agree with Niks. That's a low dose.


----------



## Johnnysmom

Johnny had the same thing happen.  When I called Paul (his nurse at the time) she said sometimes that can happen while the body is healing and adjusting.  She was glad we reported it, and wanted to know if it happened again but was not overly concerned.

Hope it turns out to be nothing.:heart:

(((((HUgs))))


----------



## jmckinley

So glad to hear that things are improving so much for Grace. I know it has a lot to do with prednisone, but gotta love it for what it does for them! She has been ill for so long, it may take a while on a higher dose of pred before there is actual healing. Ryan is usually on a high dose for months before starting to taper.

Ryan took 6mp for 2 years with great results. I know it's scary reading about the possible effects, but it's like the prednisone....if it works, go for it and enjoy the happy, healthy moments.

Hugs to you and Grace....no finger-wagging for you!  :nonono:


----------



## QueenGothel

If it is frank blood, a steroid enema might be helpful too.  I just don't understand where the bleeding is pooling from.  Correct me if I am wrong but I thought the inflammation appeared to be microscopic and less colonic?!?


----------



## Clash

I would be worried too, from what GI said, scopes look normal and what biopsy read, then unless I misinterpreted colonic involvement wasnt in play,  which also makes me wonder why no clear dx as if no colonic involvement then why or how would UC be a viable option. Maybe, though I missed a thread or post. Upping pred and/or longer taper may be helpful.


----------



## my little penguin

DS had microscopic involvement at his first scope ( not 2nd)
And still had frank blood.
If I remember Grace had scarring near her rectum from repeated inflammation.
Also EGE can cause bleeding all on its own


----------



## Farmwife

I actually have time to myself tonight.:rosette1: WOW!:rosette1:
 I'm staying quiet as a mouse, as not to draw attention to myself.
 :soledance:So far so good.:soledance:

Update:
Grace started her Priloset (sp?) today. The gi said to still give the Zantac until Sunday.
GI also kept the pred at the same dose. He wants to see if the PPI will make a differences. I pray it does.
Since Grace has been ill her sinus inflamed and I had to take her NG tube out. Our nurse said it will be put back in once she's better and or she looses any weight. Since the pred she's not lacking in drinking the shakes. So for the next couple days I'm enjoying the slight freedom  from EEN duty.:ybiggrin:


----------



## my little penguin

Who knows she may be able to just drink it all
No tube for a while at least 
Glad she is holding her own and the Gi is keeping the pred stable


----------



## Sascot

Time to yourself?  Wow, that must have been unusual :ybiggrin:.  That's really good Grace can drink the shakes, hope the new med helps!


----------



## Niks

Well done Grace!!  :dance:

Hope you enjoyed your time to yourself x


----------



## Clash

Glad she is drinking the shakes, hope sinuses calm down for her. Hopefully pred will do it's thing, quickly!!


----------



## izzi'smom

Sending love and warm wishes for Grace...:heart:, and mama, of course!!


----------

