Farm Girl and IBD and Eosinophilic Disease

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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:
 
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:
 
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.
 
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 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!
 
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 .
 
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!
 
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
 
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
 
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.
 
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!
Click to expand...

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.
 
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 :D

J.
 
Let me clarify. EoE is UPPER GI only. His stomach and bowel were unremarkable. We're only repeating uppers.
 
So glad to hear that the GI symptoms are improving already. I hope the rest of her symptoms resolve soon too.
 
I am in agreement - take her to devo's and get soe IV pred into her.
((((((((((((((((((((((((((HUGS))))))))))))))))))))))))))))))))))))))))))))))
 
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
 
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!
 
Glad things are looking better! :D

But, ouch on the finger!!! Hope it's feeling a bit better too! :)
 
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
 
She was up ALL night!!!!! With a cold. That's it!:ybiggrin: No pains! NOTHING!:D 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:
 
: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:
 
Its so nice to hear Grace is feeling so well!!! :banana: :banana:

We'll miss you :cry: but am hoping most of your time away will be spent enjoying time with your princess and family!! :D
 
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
 
HUGS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
so so pleased for all of you that Grace is feeling better!!!! - enjoy your time!! xxxx
 
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:
 
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 .
 
I don't know FW. Seems odd since pred is often used to treat asthma also. I hope things settle back down!
 
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.
 
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...
 
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:
 
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:
 
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))))
 
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:
 
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?!?
 
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.
 
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 :(
 
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:
 
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
 
Time to yourself? Wow, that must have been unusual :ybiggrin:. That's really good Grace can drink the shakes, hope the new med helps!
 
Glad she is drinking the shakes, hope sinuses calm down for her. Hopefully pred will do it's thing, quickly!!
 

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