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Little Farm Girl and Colitis
- Thread starter Farmwife
- Start date
It worked. I can't bloody believe it!
So David or whoever can read these. Please remember Grace has had this (problems) for years!
MLP we had Grace off of milk and all dairy products since she was 3 months old. At three the GI had her go back on dairy to see if it flared thing further and it NEVER changed anything. Also she's had allergy testing twice and It never showed any allergy.
But still I'll be more than willing to take her off of anything if it will heal and or help her body in any way!
So David or whoever can read these. Please remember Grace has had this (problems) for years!
MLP we had Grace off of milk and all dairy products since she was 3 months old. At three the GI had her go back on dairy to see if it flared thing further and it NEVER changed anything. Also she's had allergy testing twice and It never showed any allergy.
But still I'll be more than willing to take her off of anything if it will heal and or help her body in any way!
Yes:dance:Yes:dance:Yes:dance:
I'm very happy about that.
BUT:shifty: The hubby said.....what does the rest of the track look like?
The bad constipation and rectal pain has just started in the last 6 months.
The rest (abdomen pain, flank pain, joint pains, eye pain and skin rash) have been happening for years.:ywow: So in my hubby's mind and a guess a bit in mine:wink: is what does the rest of the track look like.
Still at least that's a bit of good news. My bubble is looking better and better
I'm very happy about that.
BUT:shifty: The hubby said.....what does the rest of the track look like?
The bad constipation and rectal pain has just started in the last 6 months.
The rest (abdomen pain, flank pain, joint pains, eye pain and skin rash) have been happening for years.:ywow: So in my hubby's mind and a guess a bit in mine:wink: is what does the rest of the track look like.
Still at least that's a bit of good news. My bubble is looking better and better
Ok mommy opinion not doc opinion
So you need to talk you yours....
EOS - the eosinophils they found through out her colon and rectum would indicate EC which is different than allergic colitis.
The hard part is there is expected to be some EOS in the Gi tract ( about 30) but that can vary by location also to make matters more confusing you can have some EOS with Ibd .
Even if you pulled milk for a while that would not necessarily been all of her triggers.
See top eight allergens above
Plus if you cooked with it or gave her Anything that was produced on the same line or in the same facility as other products containing milk ( ie crackers, cookies etc)
Then her body would still be getting trace amounts and react.
EC is a mixed IgE reaction so the reaction can be days later and can take compounding amounts to build to a full fled flare.
That is why most kids with egids have to trial a single ingredient for up to 3 weeks - some fail within a week.
This would explain the extreme pain etc when she went boost only .
You really need to call cchmc cced TODAY
Talk to the intake coordinator - they can help you figure out how to get in and have her take part of their weeklong program .
This is a life long thing and 4 weeks of formula will not fix it.
That is only the beginning
But if you can identify all her food triggers in a few years ok ten she should be close to normal no drugs.
KFA has a large group of moms who live and breathe egids
I do not so they could tell you more of whAt to expect and which hospital is best.
EC makes more sense given her age and issues from birth
So you need to talk you yours....
EOS - the eosinophils they found through out her colon and rectum would indicate EC which is different than allergic colitis.
The hard part is there is expected to be some EOS in the Gi tract ( about 30) but that can vary by location also to make matters more confusing you can have some EOS with Ibd .
Even if you pulled milk for a while that would not necessarily been all of her triggers.
See top eight allergens above
Plus if you cooked with it or gave her Anything that was produced on the same line or in the same facility as other products containing milk ( ie crackers, cookies etc)
Then her body would still be getting trace amounts and react.
EC is a mixed IgE reaction so the reaction can be days later and can take compounding amounts to build to a full fled flare.
That is why most kids with egids have to trial a single ingredient for up to 3 weeks - some fail within a week.
This would explain the extreme pain etc when she went boost only .
You really need to call cchmc cced TODAY
Talk to the intake coordinator - they can help you figure out how to get in and have her take part of their weeklong program .
This is a life long thing and 4 weeks of formula will not fix it.
That is only the beginning
But if you can identify all her food triggers in a few years ok ten she should be close to normal no drugs.
KFA has a large group of moms who live and breathe egids
I do not so they could tell you more of whAt to expect and which hospital is best.
EC makes more sense given her age and issues from birth
http://www.cincinnatichildrens.org/...sorders&utm_medium=shortcut&utm_campaign=cced
Call the wait list is long and she need help
Call the wait list is long and she need help
The top egid doc there would be DR Putnam .
That is who you want
That is who you want
Btw if they read her biopsy report and don't think it's egid related they will not waste your time and schedule you in the cced.
Ok just look at the table from here- her numbers are above
Read the paper to your DH
http://www.parentsown.co.uk/files/Eosinophilic Disease.pdf
In the path report her numbers are 30-50 EOS
Or eosinophils (EOS) in her colon and TI
But are 10-20 in her rectum
So above the 10-20 range seen in the lowr Gi tract normally per table 2
More than one area so EGE
Not just EC
Or eosinophils (EOS) in her colon and TI
But are 10-20 in her rectum
So above the 10-20 range seen in the lowr Gi tract normally per table 2
More than one area so EGE
Not just EC
Hi farmwife
I've just been reading ur story about ur lovely
Little grace. How is she? My little girl is also 3
4 in a couple of months.
I've just been reading ur story about ur lovely
Little grace. How is she? My little girl is also 3
4 in a couple of months.
crohnsinct
Well-known member
MLP can I just say that you totally and completely rock! I literally have tears in my eyes seeing all this awesome information and help you are giving farmwife not to mention every one else here. You are truly an angel deserving of your own fan club!
First Mylittlesunshine I love the name!:heart:
I was thinking since I'm from northern Michigan about my name being Mylittlesnowflake but that's just to long to write.
Well you know how it goes. It's hard enough having a spirited 3 yr. old but have one with health problems....I need a lot of Tylenol!:wink:
We've been very blessed that Grace has never showed her sickness. A blessing and a curse. She however, she is ill and I'm trying to wrangle all the people in place for her health care:voodoo:. She' about to start EEN for what could now be awhile.:shifty:
How is your little one?
AZMOM
No the GI knew the biopsy results and that's why he wanted her on it right away.
Their coming tomorrow. I just got off the phone with the equipment company. I'm just waiting for the home nurse to call and tell me the time.
I'm just thinking out loud MLP but do you think the GI thinks this to?
How will we know if it's IBD or EGE?
Does anyone on the forum have both?
We meet with the GP on Tuesday and will be discussing this all. We are more then willing to go to Cinny if that is what it takes.
All I know is Grace is going to sleep herself into a coma soon. I hope the EEN helps perk her up.
No the GI knew the biopsy results and that's why he wanted her on it right away.
Their coming tomorrow. I just got off the phone with the equipment company. I'm just waiting for the home nurse to call and tell me the time.
I'm just thinking out loud MLP but do you think the GI thinks this to?
How will we know if it's IBD or EGE?
Does anyone on the forum have both?
We meet with the GP on Tuesday and will be discussing this all. We are more then willing to go to Cinny if that is what it takes.
All I know is Grace is going to sleep herself into a coma soon. I hope the EEN helps perk her up.
I know of two on KFA
EC & uc
Other crohn's EGE
EC & uc
Other crohn's EGE
Farmwife I hope the NG tube feeding goes well
My daughter has had it a few times when been in
Hospital, it gives a lot of relief we found.
Thinking of you both
My daughter has had it a few times when been in
Hospital, it gives a lot of relief we found.
Thinking of you both
FW
The problem is EGIDs are rare and new ( 10 years or less )
Given all that she has going on you need to take her somewhere that they are experts in egid/Ibd
Where she would not be one of
But more routine for the docs .
I don't know what your Gi is thinking
But given he only took 6 biopsies - total .......grrr
In order to rule out EoE which is what effects the esophagus you need to take a minimum of at least 3 biopsies usually more so that could be coming into play as well.
I just feel for you.
I do not know how they rule out Ibd and egid but I do know cchmc was able to do it easily for my son without even seeing him .
We sent all the records and scans and biopsies - including a picture of the child so the docs connect better.
They hold an interdisplinary team meeting on each kid - discuss each kid and then determine the likelihood of egid - if its high then and only then so they schedule an appt.
They have the same process for the Ibd clinic so when you arrive they really know your child and they do not waste any time .
If it were my child I would call cced try to get ask about the process for dr Putnam
He is the best Gi hands down and DS has seen him - but not as a egid patient .
Thankfully that was ruled out by phone .
They have financial specialists who are used to nothing but out of town/ state / country patients so they are a whiz at insurance .
Top Ibd places you already know
Bch
Chop
Cincy
Top egid places
Cincy
Chop
National Jewish in Denver
Your family deserves a doc who is going to get a great care plan together
So either your local one can follow it you can do the long distance thing.
Chop and Denver would be a trip for you but Cincy is drivable
They have a Ronald McDonald house so lodging is cheaper or free as well as medical discounts at a large portion of the hotel and long term stays so you can cook in.
Guest services will give you free passes to the local things like zoos and museum to make it a mini vacation
You are in my thoughts and prayers
The problem is EGIDs are rare and new ( 10 years or less )
Given all that she has going on you need to take her somewhere that they are experts in egid/Ibd
Where she would not be one of
But more routine for the docs .
I don't know what your Gi is thinking
But given he only took 6 biopsies - total .......grrr
In order to rule out EoE which is what effects the esophagus you need to take a minimum of at least 3 biopsies usually more so that could be coming into play as well.
I just feel for you.
I do not know how they rule out Ibd and egid but I do know cchmc was able to do it easily for my son without even seeing him .
We sent all the records and scans and biopsies - including a picture of the child so the docs connect better.
They hold an interdisplinary team meeting on each kid - discuss each kid and then determine the likelihood of egid - if its high then and only then so they schedule an appt.
They have the same process for the Ibd clinic so when you arrive they really know your child and they do not waste any time .
If it were my child I would call cced try to get ask about the process for dr Putnam
He is the best Gi hands down and DS has seen him - but not as a egid patient .
Thankfully that was ruled out by phone .
They have financial specialists who are used to nothing but out of town/ state / country patients so they are a whiz at insurance .
Top Ibd places you already know
Bch
Chop
Cincy
Top egid places
Cincy
Chop
National Jewish in Denver
Your family deserves a doc who is going to get a great care plan together
So either your local one can follow it you can do the long distance thing.
Chop and Denver would be a trip for you but Cincy is drivable
They have a Ronald McDonald house so lodging is cheaper or free as well as medical discounts at a large portion of the hotel and long term stays so you can cook in.
Guest services will give you free passes to the local things like zoos and museum to make it a mini vacation
You are in my thoughts and prayers
FW
Happy you guys are finally getting some answers. So glad MLP is so knowledgable about all this. I agree with her to push to see that specialist Dr. Putnam. When you are dealing with something more on the rare side you definitly are better off going with a doctor who is experience in that area especially when dealing with a child.
Happy you guys are finally getting some answers. So glad MLP is so knowledgable about all this. I agree with her to push to see that specialist Dr. Putnam. When you are dealing with something more on the rare side you definitly are better off going with a doctor who is experience in that area especially when dealing with a child.
Farmwife I hope everything goes well with the tube
When my dd had the NG tube they used
Micropore tape it's a white tape or u can use plaster
But micropore tape we found better on the skin x
When my dd had the NG tube they used
Micropore tape it's a white tape or u can use plaster
But micropore tape we found better on the skin x
MLP, I am confused about the EOS and EGIDs. Is the difference the eosinophils count? Johnny's were elevated in his stomach, duodenum, terminal ileum, cecum, ascending colon, transverse colon and descending colon. I thought this was normal with crohn's or does this show some sort of allergy?
Sorry I know you have already explained this but I am not getting it.
Sorry I know you have already explained this but I am not getting it.
Aw poor grace .it will take a few days for her
To get used to it x
Thinking of u both x
To get used to it x
Thinking of u both x
- Location
- Michigan, USA
Hope she comes to terms with it quickly. Rowan wouldn't talk with one in I hope that doesn't become an issue. Granted her tube was much larger than the normal tube. Poor Grace.
Wishing you luck with the tube. It maybe overwhelming at first but keep reminding yourselves that this is the best possible decision.
Hugs
Hope it helps
Hope it helps
I bet little Grace will be a pro in no time at all. ((((Hugs)))) momma.
Crohn's Mom
Moderator
Hope she's feeling better today....
Tell her she's wearing that tube like its THE new fashion for 2013 princesses ! :hug:
Tell her she's wearing that tube like its THE new fashion for 2013 princesses ! :hug:
Johnnysmom- EOS are found typically when there is inflammation. due to an egid .
However they can also be present some times in Ibd patients.
I am not sure How they distinguish between those kids that have components of both diseases and those that have Ibd vs egid .
That is well beyond anything I read .
I do know of a few children dx with both and they are seen at the BIG hospitals .
Since cchmc is known for both and their pathologists routine check for Egids - I would think they would have flagged it if it was a concern.
However it truly does not hurt to ask since you have the resources right there kwim .
However they can also be present some times in Ibd patients.
I am not sure How they distinguish between those kids that have components of both diseases and those that have Ibd vs egid .
That is well beyond anything I read .
I do know of a few children dx with both and they are seen at the BIG hospitals .
Since cchmc is known for both and their pathologists routine check for Egids - I would think they would have flagged it if it was a concern.
However it truly does not hurt to ask since you have the resources right there kwim .
Thank you MLP.
I was thinking that they would have noticed something was off when they reviewed his records. The pathologists were from our old hospital but I know they went over the biopsies when we transferred. I also didn't find a satisfactory explanation concerning exactly how the two are distinguished. It was the most remarkable thing found on his biopsy though. And I read that EOS react quickly to steroids. Johnny CRP and ESR were normal 6 days after starting Prednisone. I remember our G.I. being shocked that he reacted so quickly.
I will make sure to ask them at his next appointment.
Thank you again. Hope things are settling for you. Praying for good results on those fecal tests.
I was thinking that they would have noticed something was off when they reviewed his records. The pathologists were from our old hospital but I know they went over the biopsies when we transferred. I also didn't find a satisfactory explanation concerning exactly how the two are distinguished. It was the most remarkable thing found on his biopsy though. And I read that EOS react quickly to steroids. Johnny CRP and ESR were normal 6 days after starting Prednisone. I remember our G.I. being shocked that he reacted so quickly.
I will make sure to ask them at his next appointment.
Thank you again. Hope things are settling for you. Praying for good results on those fecal tests.
Get a copy of cchmc biopsy results.
Any images or biopsy slides that were sent when you transferred would have been re read and would have a report.
Just ask they printed out DS reports in 30 seconds .
Egid have food triggers so that would explain the weight issues .
One if the children with both actually sees two gi's one for egids and one for Ibd at the same hospital .
Good luck johnny'smom
Any images or biopsy slides that were sent when you transferred would have been re read and would have a report.
Just ask they printed out DS reports in 30 seconds .
Egid have food triggers so that would explain the weight issues .
One if the children with both actually sees two gi's one for egids and one for Ibd at the same hospital .
Good luck johnny'smom
Something that I was just thinking about FW...
When Johnny was having joint pain while under Dr. K's care, Dr. K said he felt it was not crohn's related because he SED and CRP were at that time normal. He really didn't offer us any options for treating his knee pain. When we went to Cincinnati children's we talked about Johnny's knee pain and they said it absolutely could be treated and they often need to be treated separately. When I told him that other G.I. felt pain was not related to crohn's because that was in remission he just shook his head no. So if you find they aren't addressing Grace's EIM's you might want to look at that second opinion.
Just a thought.
When Johnny was having joint pain while under Dr. K's care, Dr. K said he felt it was not crohn's related because he SED and CRP were at that time normal. He really didn't offer us any options for treating his knee pain. When we went to Cincinnati children's we talked about Johnny's knee pain and they said it absolutely could be treated and they often need to be treated separately. When I told him that other G.I. felt pain was not related to crohn's because that was in remission he just shook his head no. So if you find they aren't addressing Grace's EIM's you might want to look at that second opinion.
Just a thought.
FW, I don't know I just really caught up on this thread, didn't know you had posted those reports. In reading the reports it said mild plasmacytosis in the stomach(unless I completely misread, which is possible!!!!!) I just wondered what that meant, if it had to do with gastritis or inflammation??
Didn't see clash post ....
FW
Egid do involve leg pain in a lot of kids when they are flaring.
FW
Egid do involve leg pain in a lot of kids when they are flaring.
Second johnny'smom
DS had joint pain while his blood levels were normal.
Rheumo treats it - since we have found for him it is an indicator his crohn's is not under control.
DS had joint pain while his blood levels were normal.
Rheumo treats it - since we have found for him it is an indicator his crohn's is not under control.
So I got nothing
.....
Ok so upon further reading it could be really bad.
Or just fromh pylori or mild gastris ....
In other words ASK you doc
I haven't got a clue
Or just fromh pylori or mild gastris ....
In other words ASK you doc
I haven't got a clue
Thanks mlp. That make me feel better, But NOT the cancer thing!:ywow:
Clash I can only say how embarrassed:ytongue: I am about not even seeing that. I've looked at the report so many time and never thought about it!
I'll write more once I pick myself off the floor!
I already turned it down Clash. She's ill tonight.
I'm close to hitting myself in the head for being so impatient.
I just want her to eat and feel better.
In 7 days she's down 6 lbs. She all most four and is now 31 lbs.
I'm off for the night. My bachelor of a brother just came for food and to do laundry.
I'm close to hitting myself in the head for being so impatient.
I just want her to eat and feel better.
In 7 days she's down 6 lbs. She all most four and is now 31 lbs.
I'm off for the night. My bachelor of a brother just came for food and to do laundry.
FW - if it was a real issue I would assume your Gi would have her having more tests quickly as in last week......
So get off the floor -
The Zantac she is taking would treat the gastris but since it was still present it my or may not have been enough...
See not a doc just a confused mom
I only know what my kid has had very well ...
Other stuff not so much
No off the floor and back to work
So get off the floor -
The Zantac she is taking would treat the gastris but since it was still present it my or may not have been enough...
See not a doc just a confused mom
I only know what my kid has had very well ...
Other stuff not so much
No off the floor and back to work
Hugs ... Sorry about the ill feeling
I was worried about that - refeeding syndrome
You lose a lot of weight the body can't handle it all at once really fast
Call the nurse in the am
I was worried about that - refeeding syndrome
You lose a lot of weight the body can't handle it all at once really fast
Call the nurse in the am
It's all right guys.:wink: It's my fault for upping to quick. The fact is she's not handling it well at all and neither am I. It's just hard to watch the one you love suffer. You all know this.:hug:
The thing about the GI is......I want to be told every possibility out there so I can prepare. I know that's unrealistic but it's still a dream.
Johnnysmom:heart:
Well apparently he's changed a bit. Once the dx was made then he was concerned about her joint pain, big time. Next day got a call and she has a rheumy apt. on Feb 14th. Keep in mind their backed up till March. THANK YOU GI!!!!!:soledance:
:ywow:Have to go my brother is doing my dishes.
Does that tell you how messy my house is. :awe:
:biggrinon't get me wrong I'm going to sneak of to bed!utahere:
The thing about the GI is......I want to be told every possibility out there so I can prepare. I know that's unrealistic but it's still a dream.
Johnnysmom:heart:
Well apparently he's changed a bit. Once the dx was made then he was concerned about her joint pain, big time. Next day got a call and she has a rheumy apt. on Feb 14th. Keep in mind their backed up till March. THANK YOU GI!!!!!:soledance:
:ywow:Have to go my brother is doing my dishes.
Does that tell you how messy my house is. :awe:
:biggrin
on't get me wrong I'm going to sneak of to bed!utahere:Feb. 14th is a miracle! There is only one rheumy that serves half the state. They laughed at me when I tried to get Johnny on a cancelation list. We never did end up seeing him.
I am going through Johnny's biopsy report too, googling things and all that scary stuff comes up. But I have to believe that these Dr.'s know what they are doing. If they thought there was even a chance something really bad was going on with Grace I know they would react. They might not know what it was but they would admit her and figure it out now. That much I am very sure of. So I am assuming that there is just a lot of this we just don't understand (not going to medical school and all) but I think it helps to have so many eyes looking over the report and asking questions.
Hoping EN goes better tomorrow ((((Hugs)))))
I am going through Johnny's biopsy report too, googling things and all that scary stuff comes up. But I have to believe that these Dr.'s know what they are doing. If they thought there was even a chance something really bad was going on with Grace I know they would react. They might not know what it was but they would admit her and figure it out now. That much I am very sure of. So I am assuming that there is just a lot of this we just don't understand (not going to medical school and all) but I think it helps to have so many eyes looking over the report and asking questions.
Hoping EN goes better tomorrow ((((Hugs)))))
Feb. 14th is a miracle! There is only one rheumy that serves half the state. They laughed at me when I tried to get Johnny on a cancellation list. We never did end up seeing him.
QUOTE]
I don't mean to brag Johnnysmom but:tongue:............
When they called and gave me the date the nurse also said we were on the cancellation list!:hug: Maybe it's because Grace looks cuter than Johnny siting on his lap.:lol2:
Grace had a bad night. Lots of abdomen pain.
We have church today. That should keep her mind occupied.
Have a good day one and all!:hug:
Um....because your busy cleaning stomach contents off your couch?!? Go easy on yourself FW. You are doing a great job. :rosette2:
Oh, your sweet. :rosette2:When and if M and I come down, I'll have M get you a nice suite at a fancy hotel for us to enjoy!:thumleft:
Update:
Second visit with the new GP for Grace.
She feels that colitis is the right dx but is leaning on Crohn's from the biopsies.
She's awesome with her knowledge of vitamins and is going to test for all I asked for and even said if I forget one call and she'll order it.
She thinks the MRE can wait. Not happy but at least I got the labs ordered.
She wants to see Grace every 4-6 weeks. Labs if their normal (which they have been) every two months. Now if something should pop up on the labs closer together.
OK MLP I know your waiting for this.
She knew what the EOS were and started talking about a specialist at John Hopkins.
I tried to speak about Cinny but she was fixed on her guy. The conversation dropped soon after. I'll try later. So no go there for now.:voodoo:
The GP agreed the brace would help support the leg. She ordered a soft brace which Grace has to have fitted.
I'm off.
Tomorrow will be filled with town trip and phone calls and maybe I'll clean the house. But I'm not sure on that!:tongue:
Second visit with the new GP for Grace.
She feels that colitis is the right dx but is leaning on Crohn's from the biopsies.
She's awesome with her knowledge of vitamins and is going to test for all I asked for and even said if I forget one call and she'll order it.
She thinks the MRE can wait.
Not happy but at least I got the labs ordered.She wants to see Grace every 4-6 weeks. Labs if their normal (which they have been) every two months. Now if something should pop up on the labs closer together.
OK MLP I know your waiting for this.
She knew what the EOS were and started talking about a specialist at John Hopkins.
I tried to speak about Cinny but she was fixed on her guy. The conversation dropped soon after. I'll try later. So no go there for now.:voodoo:
The GP agreed the brace would help support the leg.
She ordered a soft brace which Grace has to have fitted.I'm off.
Tomorrow will be filled with town trip and phone calls and maybe I'll clean the house. But I'm not sure on that!:tongue:
John Hopkins really ... For EOS
Sorry but most kids from MD travel to cchmc with egid ...
Not hopkins which is great for alot of things
Do you have to have a referral for insurance ????
Sorry but most kids from MD travel to cchmc with egid ...
Not hopkins which is great for alot of things
Do you have to have a referral for insurance ????
MLP
When she pushed her guy (which a world renown nutrientist), I dropped the conversation.
I have no plan on going their, second will be at cchms. I just have to get her on board. Which I believe she will be when this settle and we can focus a bit more.
This appointment seemed a bit overwhelming for us and her. Lots to talk about so we weren't able to go in depth about anything.
In the coming conversations I will be saying what I want in the way of second opinions again.
When she pushed her guy (which a world renown nutrientist), I dropped the conversation.
I have no plan on going their, second will be at cchms. I just have to get her on board. Which I believe she will be when this settle and we can focus a bit more.
This appointment seemed a bit overwhelming for us and her. Lots to talk about so we weren't able to go in depth about anything.
In the coming conversations I will be saying what I want in the way of second opinions again.
FW
Glad to hear the visit went well and the new GP is so supportive. How is Grace doing with the tube? Is she getting used to it?
Glad to hear the visit went well and the new GP is so supportive. How is Grace doing with the tube? Is she getting used to it?
Dr.K did our referral to Cincinnati. Would he be willing to do one for you? It was technically a transfer of care but they said it was handled just like a second opinion.
They did it for Mott's and then found out about the insurance. I don't want to change Gi's at this point. I want the EOS "thing" looked at Cincinnati. However our GP felt it was all crohn's related. Keep in mind we still don't know if it's crohn's or UC. But I think she felt and rightfully so, because the TI has active ileitis (with eosinophilia) it's crohn's.
We'll see.
We'll see.
What has the Gi said???
If anything about the EOS ???
Or overall dx except generic colitis
If anything about the EOS ???
Or overall dx except generic colitis
I feel like it was a general colitis. He (GI) said that he feels that she's "coming into it". :shifty:
I told the new GP this but she said she feels it already crohn's. BUT she's NOT the GI.
I want more proof than just a feeling!
Right now I'm going with the flow. :wink:I'm just thankful for EN.:heart: I just hope it's enough to help. I'll push when the time comes! Who knows it could be tomorrow!
Off to bed! I hope it's a restful night!
I told the new GP this but she said she feels it already crohn's. BUT she's NOT the GI.
I want more proof than just a feeling!
Right now I'm going with the flow. :wink:I'm just thankful for EN.:heart: I just hope it's enough to help. I'll push when the time comes! Who knows it could be tomorrow!
Off to bed! I hope it's a restful night!
:voodoo:Grace has taken a turn.
BAD pains in her right side last night. About rushed her to the ER, but the pains stopped.
Stomach pains. Her neck pain is now two inches lower.
Call her GP secretary said she fax the GI her labs. I asked for the levels that are off but she was resistant on telling me. I begged and she did say...Low B12 and zinc levels, elevated LDH (AGAIN) and VERY LOW WBC counts.
I told the GI nurse that I would like to give it the week-end. She agreed as long as the pains stays low.
I know and want to give EN more time to work. I just hope she can wait.
That LDH bothers me.:voodoo: That means tissue death. She's been having high levels off and on for a year. This just proves to me that I should be pushing for an MRE.
I'm off. Y'all have a good and safe week-end.
BAD pains in her right side last night. About rushed her to the ER, but the pains stopped.
Stomach pains. Her neck pain is now two inches lower.
Call her GP secretary said she fax the GI her labs. I asked for the levels that are off but she was resistant on telling me. I begged and she did say...Low B12 and zinc levels, elevated LDH (AGAIN) and VERY LOW WBC counts.
I told the GI nurse that I would like to give it the week-end. She agreed as long as the pains stays low.
I know and want to give EN more time to work. I just hope she can wait.
That LDH bothers me.:voodoo: That means tissue death
. She's been having high levels off and on for a year. This just proves to me that I should be pushing for an MRE.I'm off. Y'all have a good and safe week-end.
Catching up on things Farmwife. I am glad to hear that there's finally some action on the GP and GI's side of things and a possible DX (even though you were already pretty sure about it!). I am sorry that poor Grace is having so many ups and downs! She sure deserves a medal for all that she's endured.
I hope that she has a better weekend (so you don't have to go to the ER) and you get some answers about that bloodwork from the GI.
By the way, that photo is adorable!
Hugs to you and "Way to Go" for your persistence with these docs!
:medal1:
I hope that she has a better weekend (so you don't have to go to the ER) and you get some answers about that bloodwork from the GI.
By the way, that photo is adorable!
Hugs to you and "Way to Go" for your persistence with these docs!
:medal1:
- Location
- Michigan, USA
With you momma! Hang in there. :ghug:
FW just a thought concerning the leg ... Did anyone ever have her evaluated by Neuro when she was done at Devos .???
Sudden leg issues usually needs a Neuro rule out ( including ms) add tissue death and well ....
Please talk to your Gi ask him for a Neuro referral..
When DS complained of numbness or tingling in his arms Neuro saw him within a few days even after peds had signed off on it.
Hope she is doing better
Sudden leg issues usually needs a Neuro rule out ( including ms) add tissue death and well ....
Please talk to your Gi ask him for a Neuro referral..
When DS complained of numbness or tingling in his arms Neuro saw him within a few days even after peds had signed off on it.
Hope she is doing better
Thanks everyone!:hug:
Update: Grace seems to be holding her own for now.
Low-grade fevers, joint pains still bothering her and the occasional belly pains are building up.
I've been in talks with her GP and GI nurse and it sounds like some imagining will be done soon. What it will be, I know not. I'll find out more tomorrow.
It's already been suggested about adding the pred. by the GI nurse.
I however want the imagining (hoping MRE) first so I can get the "big" picture of her body.
I wont let them throw meds at my kid without giving a clear reason of why her body is acting this why to microscopic inflammation. :eek2:
That doesn't make sense, if it does to you then let me know in child-like language.:tongue:
Sorry I won't be around much. Tax season starting on the farm.:voodoo:
Son starting full time K and Grandparents that no longer drive but have busier lives than I do. Oh and let's not forget caring for a chronically ill child.
Hugs to all. I hope to check in soon.
To all the new parents welcome aboard and welcome to my thread about a roller coaster I want off!:voodoo:
Well at least we're all in the same car.:stinks::rof:
Update: Grace seems to be holding her own for now.
Low-grade fevers, joint pains still bothering her and the occasional belly pains are building up.
I've been in talks with her GP and GI nurse and it sounds like some imagining will be done soon. What it will be, I know not. I'll find out more tomorrow.
It's already been suggested about adding the pred. by the GI nurse.
I however want the imagining (hoping MRE) first so I can get the "big" picture of her body.
I wont let them throw meds at my kid without giving a clear reason of why her body is acting this why to microscopic inflammation. :eek2:
That doesn't make sense, if it does to you then let me know in child-like language.:tongue:
Sorry I won't be around much. Tax season starting on the farm.:voodoo:
Son starting full time K and Grandparents that no longer drive but have busier lives than I do. Oh and let's not forget caring for a chronically ill child.
Hugs to all. I hope to check in soon.
To all the new parents welcome aboard and welcome to my thread about a roller coaster I want off!:voodoo:
Well at least we're all in the same car.:stinks::rof:
Sorry about the pain etc.....
Fwiw DS had microscopic inflammation
We did en and he STILL needed pred x 5 months
Imaging was picture perfect too btw.
Not saying not to do the imaging
Just that all the studies state en works best for kids with mild disease.
Which grace may or may not have..
En doesn't hurt and is worth the effort but more may be needed to help her.
Also it would help if they were sure what they are dealing with..
Have they told you yet or is it still we are not sure
Fwiw DS had microscopic inflammation
We did en and he STILL needed pred x 5 months
Imaging was picture perfect too btw.
Not saying not to do the imaging
Just that all the studies state en works best for kids with mild disease.
Which grace may or may not have..
En doesn't hurt and is worth the effort but more may be needed to help her.
Also it would help if they were sure what they are dealing with..
Have they told you yet or is it still we are not sure
Thanks MLP. You truly are a treasure to this forum.:hug:
I told the GI nurse....we will stay on EN until we have more clear answers.
I have a lot going on and it's nice to know she's getting all her nutritional needs meant.
Grace hasn't even asked for food. What does that tell you!
So your ds had ONLY microscopic inflammation?:eek2:
I told the GI nurse....we will stay on EN until we have more clear answers.
I have a lot going on and it's nice to know she's getting all her nutritional needs meant.
Grace hasn't even asked for food. What does that tell you!
So your ds had ONLY microscopic inflammation?:eek2:
crohnsinct
Well-known member
And the plus side to the Prednisone is it is the protocol (or at least I think I remember reading that somewhere) for what Dr. Penguin suggesed this could be...so at least you won't be out in left field should this turn out to not be IBD at all.
His scope in sept 2011 was visually NORMAL.
So much so Gi had a script for meds for functional disorder all ready - we waited for biopsy results.
He had alot inflammation including marked inflammation with multiple granulomas in the TI.
He aslo had inflammation in the caecum, duodenum , stomach , esophagus - but it could only be seen in the biopsies so microscopic .
Ct only showed mild thickening of the TI . Which radiologist thought was not true thickening.
Hence why our gi wasn't completely sure and our 2nd opinion at Cincy
.
Egids are typically treated with EEN -
Only steriods if its EGE or EC ...
So much so Gi had a script for meds for functional disorder all ready - we waited for biopsy results.
He had alot inflammation including marked inflammation with multiple granulomas in the TI.
He aslo had inflammation in the caecum, duodenum , stomach , esophagus - but it could only be seen in the biopsies so microscopic .
Ct only showed mild thickening of the TI . Which radiologist thought was not true thickening.
Hence why our gi wasn't completely sure and our 2nd opinion at Cincy
.
Egids are typically treated with EEN -
Only steriods if its EGE or EC ...
AZMOM
Moderator
I'm sure you've read plenty. But found this so thought Id pass along.
http://digestive.niddk.nih.gov/ddiseases/pubs/microcolitis/
http://digestive.niddk.nih.gov/ddiseases/pubs/microcolitis/
crohnsinct
Well-known member
...so MLP would she have it all covered if she stays on EEN and adds the Prednisone? I am obviously not a cheerleader for drugs but just sayin' don't hate on the Prednisone. It could be a very helpful drug and has its time and place.
Crohn's Mom
Moderator
So with you there cic ! I'm (we're) not a fan of prednisone either -
It's the drug we all love to hate - but when it's needed it does do wonders !
Hang in there FW and don't brush off pred just because you're scared of the "possible" side effects
It's the drug we all love to hate - but when it's needed it does do wonders !
Hang in there FW and don't brush off pred just because you're scared of the "possible" side effects