Farm Girl and IBD and Eosinophilic Disease

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: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:
 
: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...
 
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
 
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.
 
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.
:ysmile:DON'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!
 
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!
 
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.
 
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:
 
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.
 
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.
 
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.
 
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.
 
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:
 
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.
 
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.
 
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:
 
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.
 
My youngest has problem with sunscreens. She reacts worse to the ones for sensitive skin.

We do better with the zinc based ones.
 
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.
 
By all egg do you mean chicken eggs or all eggs.

Because there are also duck, or goose eggs etc.
 
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 .
 
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 .
 
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:
 
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.
 
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:
 
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:
 
At least you now have a starting point and time to think about first meals while still doing EN.

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

:highfive::highfive::highfive::highfive:
 
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!!
 
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:
 
Yeah that ^^^^
Really bad labs are flagged and you get a fast call
The doc just might want to discuss stuff as well
 
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!
 
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
 
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..................
 
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
 
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
 
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!
 
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:
 
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! :(
 
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!"
 
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:
 
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.
 
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:
 
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.;)
 
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.
 
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?
 
Egid is not auto immune
It is an allergic disorder of the gut.
Currently there is no cure or meds except pred.
 
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!:D

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

Hopefully it was from the therapy.

Have you tried giving her pain killers?
 
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.
 
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
 
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.
 
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!:cry:
 
It's a good thing Grace is so cute, most people have to wait a lot longer for that rheumy appointment. :D

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. :eek:
 
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. :eek:

BTDT only during an EEG test ( 3 days) :ack:
the looks we got. You think he had the plague.
 
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!
 
It is actually spelled detachol, you can probably order it through her medequip or whereever you are getting her medical supplies.

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