Blood in his stool this morn

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Well that stinks
I would really try to get in to a top egid center
Dancemom's GI runs one in Florida
Boston children
Chop
Cchmc
And Denver
As well as DuPont in New Jersey
Are the top places I know of
Ask for a specific area on KFA lots of parents btdt with egid there

Treatment is buesonide or flovent swallowed
Or top. 8 free diet with amino acid formula to supplement
Scope in 8-12 weeks
 
Well...still no call from the GI ughhh. The last 2 days he's complained of a stomach ache at night. :p idk maybe it's what he's eating...just wish he'd have a treatment plan so I feel like we're working on getting him better...
 
Egids are triggered by diet
So either you treat with steriods or top eight free diet ( no milk eggs wheat soy fish /shellfish peanuts /treenuts ) or you go on full EEN amino acid based then slowly add foods back one at a time
His gut probably won't feel better till his trigger foods are removed for 6-8 weeks or is on steriods 6-8 weeks
Some kiddos required both amino acid formula plys steriods
70% have clear scopes on top eight free diet

Diet doesbt not tend to fix lower egid though
Oddly treatments are very similar to crohns
Some have theories that egid lower end is just a precursor for Ibd
 
My gut feeling is he had the EoE plus something else lower in his gut, but he's not flaring or showing definitive signs of it yet (which I guess is what the biopsies showed, some issues in his colon but nothing to definitive to say it's IBD or it has to get worse) I just don't feel like eosiniphils in the duodenum and colon show up without some reason (Not to mention the other cellular abnormalities, but that in my own research I'm not a pathologist).

I was advised not to do any diet eliminations without the go ahead from the dr so he could keep an eye on how he does. I'm not sure which way I should go/which way his doc would want to go first. I'm not a fan of giving him steroids since he doesn't have any strictures or furrowing but I'm not sure if he should be on combo formula and elimination diet or just try an elimination diet and go from there. I also wanted to try to get him into an allergist and hope the gi and allergist would work together...but I guess that's not happening now...

Yesterday he had a lot of snacks as it was the last day of school, his teacher brought in chocolate chip pancakes and cookies and other cakes, at his dads he had more pancakes and chicken fries. Tonight I feel his stomach hurt because he drank 2 apple juice boxes(he said when he moved his stomach around it made swishing noises). *sigh*
 
Why can't you get into an allergist ????
Most allergist work In tandem with the go on EoE ...
Definitely don't change his diet until you speak to the GI ....
I was only letting you know what the majority of studies /parents have used in the past.
It's a tough call on which to use ...
Is your kiddo easy going ..does what you tell him with little fuss or a pick your battles kind of kid .
DS will basically comply with any diet meds tests etc that the doctors ask of him.
But that said he also knows that I will make whatever he wants to fit safely in his diet .
Since he doesn't have EoE ( has EOS in his colon etc..) but has a very sensitive gut his GI is treating pretty similar to egid with him right now.
Formula only and adding one food a time avoiding too eight allergens ( plus other foods ) except fish .

But the kid doesnt complain too much because he is old enough to. Connect the dots of eating xyz and my stomach hurts .

You will get there some kids take longer to figure out
It took us 1.5 years to get the crohns dx after the original upper scope to rule out EoE . Then another two years to get JSpA dx .

We assume with DS there is more to the story but ...
He likes to keep us guessing

Good luck hope he calls soon
 
I could ask his pedi to get a referral to an allergist but I kind of wanted his GIs input on the allergist (Plus the last allergist he saw I wasn't a fan of at all)

He can be compliant but then he has this defiant streak and if he wants to do something he'll do it especially if I'm not watching him. he can be pretty sneaky which tends to be a bad thing and it usually happens while I'm in the shower, changing his sister ect. I've given him a bunch of warnings about what is coming so he is somewhat prepared however when he's in the thick of it I think it'll be difficult, especially at grandma and grandpa's and his dads. with me he'll probably be ok though..
 
Neocate is one of the formulas used for EoE I believe. My daughter is on it for Crohn's and Gastroparesis since she is very underweight. Unfortunately, she found it much worse than Peptamen Jr (which she could drink) and she has to use a tube. She tolerates it much better than Peptamen though (she had a lot of diarrhea with Peptamen Jr).

If he does tries EEN and wants to drink it, I would try to make it as cold as possible. There are a bunch of different flavors - M liked (and by liked I mean tolerated) strawberry and chocolate.

There is also a new unflavored version that we added chocolate syrup too but she just could not get that down. There is also a Neocate pudding which she tried.

We were able to get samples from our GI's office. It's worth trying, especially if you want to avoid steroids.
 
The flavors could be an issue including syrup
Some only tolerate unflavored others are fine with the eo28 splash flavored juice boxes no rhythme or reason
Anything and everything can be a trigger for some kids
So taste can be a deal breaker for older kids and amino acids
 
I went ahead aND asked his pedi for a referral to an allergist, his GI is very slow going. He seemed so on top of things when we first met, now it seems like little Z is low priority on his list. :(
 
Yeah my insurance requires referrals, thankfully his pedi is on top of things and referrals only take a day to go through. I already have the referral to the allergist I just need to make an appoitment.
 
Well we have little Z on a treatment plan. He suggested the steriods to get things under control and seeing an allergist to determine which allergens to eliminate. Then we scope in about 4 months.

The eos cells in the duodenum and part of his colon they couldn't really explain. They are hoping with treating his ee that the rest will fall into place but if it doesn't then he'll do another colonoscopy.
 
Just checking
That is correct
You swallow them and do not brush teeth etc afterwards
Typically you don't do elimination food trails and steriods at the same time for the same scope since you won't know what fixed it ...
And would have to stay on both steriods and pulled food
Versus improvement with steriods means no food needs to be pulled as long as you stay on steriods for life
Or pull foods and improvement then no steriods needed

Swallowed steriods are similar to those used for asthma so very little systemic effects
 
The eos cells in his lower GI I guess also confused the GI. He said he questioned the pathologist about it, especially since they skip the small bowel and beginning part of the colon. Path said to keep an eye and hope it clears up with ee treatment.

I went with swallowed steriods since he said it shouldn't be like the prednisone side effects, might have mild side effects but nothing like when I'm steriods.he also said after we have everything straightened out allergy wise and such we can try him off the steriods and see how he does.

I apologize, i wrote this before i coukd read your response Mr Chicken. Im not 100 percent sure what to do after we get a decent scope . it makes sense why you wouldnt do both in combination. The GI said most of his ee patients go with the steriods because a full elimination diet is difficult. He usually has them start the steriods then once allergy tests come back he has them,eliminate whatever pops. After everything is settled if i want to take him off the steriods itd be another test i guess and see how he does. I guess though this plan for the time being is a start.

I appreciate your help mr chicken. Im still learning about this and all g he info youve provided me has been invaluable.
 
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It's:30 am here...he woke up for a bm and it was painful. He was crying. When he has these middle of the night bm he also feels sick because they hurt him so bad. Greenish colored diarrhea :(

He sees the allergist Aug 24th (the soonest appointment I could make) and has been on the steriods for a day and a half now (I know it takes awhile for them to kick in).
 
Well he's had 2 painful bm today. One was while we were eating lunch, I noticed he contorted his face, muttered "owe" then ran to the bathroom. The second time he was able to wait until we got home, but he still cred whilet he went. This just doesn't seem right to me. He's not constipated, he goes at least once a day and every time he has a painful bm it's diarrhea... *sigh*
 
Is the pain in his bottom? Or is it more the crampy pain from the diarrhea itself? More in the tummy or intestine area?

Poor thing.
 
He has trouble explaining it but from what he says it's pain in his back and stomach. Sometimes he says it starts in his back and moves to his stomach. I'm not sure if its a crampy feeling though and he also can't articulate what type of feeling it is (whether it's achy, crampy, stabby ect)

On the other hand he's been on his swallowed steriods for a little more than 2 weeks and he's no longer complaining of trouble swallowing and his throat hurting, so that's an improvement. :)
 
Yest he had more stomach pain and diarrhea. It was so bad he had an accident and was in and out of the bathroom 4 times in a hAlf hour. He said it hurt in the front and was stabbing pain. He was rolling around on the floor in pain. After he passed all the diarrhea though he was back to normal.

I'm frustraited I can't do more for him, I just have to watch him be in pain until he passes all the stool. *sigh*
 
Is he doing diet as well ??
Lower Gi stuff won't be fixed by swallowed steriods since they never go beyond the stomach
I know for Ds
Certain foods trigger the types of episodes your talking about
Not ibd but definitely food
 
His gi said to wait on diet changes until we can meet with the allergist. The full elimination can be very difficult for kids and my son is prone to sneaking food if he really wants something. He sees the allergist next month and his GI later this month so I can discuss these episodes with him then.
 
Can you get on their cancellation lists or earlier apps? They need to know how much pain he's in. Find a children's pain scale in the Internet and have him show you his pain levels. Write it all down for the apps. Poor thing.
 
Saw his GI this morn. Hes resting now, has a stomach ache and a headache. Anyway the episodes of stomach pain and diarrhea he's been prescribed a med that dissolves under the tounge. I've actually been on it before and it helped me a lot, especially when I'd have bad stomach cramps. His GI said it's diarrhea specific IBS, he doesn't really believe it's food allergy. I'm keeping his allergist app(his GI did say it was good I was following up with an allergist) I guess we'll see.
 
Can you get an appt at cced in Cincy ?
They are the experts in your area and the country for that matter
Having elevated eos is NOT a food allergy but a mixed igE disorder that affects the intestines/Gi tract .
 
I'd like to get him seen in Cincinnati but the issue would be if they accept his insurance. Seeing and expert can be really expensive and we're struggling financially as it is :/ I've been trying to get approved to see the Cleveland clinic for IBD and have been hitting a wall.
 
Call sooner for Cincy
They can tell you in a matter of minutes of his insurance us accepted
They have patient coordinators since so many folks are coming for second opinions .

Cincy takes months to get an appt of longer
 
Well I think it's time to request a second opinion. (I know I said I'd call Cincinnati but I got pretty sick so things got put on hold)

Little Z had his meeting with the allergist today...and she doesn't feel he has EE, she thinks instead he has IBD. She talked to me about how EE is supposed to be diagnosed- he's supposed to be on a ppi for 6-8 weeks to see if the eosiniphils clear up and ee is then diagnosed if he still has greater than 15. She also said edig are typically in one area however little Z has higher # of eosiniphils throughout his digestive tract (some in his colon and such) just not high enough numbers to say they are causing issues. She did the allergy test and he is allergic to...NOTHING! The only thing that showed was a mild sensitivity to ragweed (at +1) no foods showed up. She did say that it's possible to have ee and not have an allergen show on the test but she's seriously questioning the diagnosis. She kept saying at his age you don't typically have multiple diagnosis for the same issues (his diarrhea, urgency to go, nocturnal bm ect) when one diagnosis makes sense.

That being said she's not a GI so I'm not sure I can rely only on what she says, I do have to take into account what his GI says. I have to schedule an appointment with him and talk about what the allergist said as well as her results and she's also contacting him about taking little z off the steriods, putting him on a ppi and scoping him again after 6-8 weeks.

Husband says he's not surprised by the visit today and ee didn't make sense to him.
 
What the allergist says is in line with current standards for EoE.
Typically you do scope on a high dose ppi and most kids have a long history of environmental allergies plus food allergies
Eoe triggers typically do not show up in allergy testing though
Also you can have egids in multiple places .

Cced will give you a large set of forms to fill out which explains most of this .
 
Just thought I'd pop in for a quick update..

I've begun the process of getting him seen at cincinnati. I'm not sure if I should get him on a ppi and scoped at his current GI and then have the slides sent to Cincinnati or if I should take a week and get everything done at cincinnati

Still haven't heard back from his gi regarding stopping flovent and starting a ppi and getting scopes redone

I have a 504 meeting set up for today but without a clear diagnosis I'm not sure how the meeting will go.

We've had a couple stomach aches but no incidents of diarrhea or urgency.
 
I would go to Cincy let the. To their test
Get some resolution and move on
They know what to look for and where
Otherwise you will question were the biopsies taken in the right place etc.....
There is a reason they are the top place to go.

Second set of eyes is always a good thing

We didn't wait for Ds prior to his first Cincy visit
Since his appt was 7-8 weeks away and he was having bloody diarrhea so not scoping was not an option. That said we trusted our local Gi and still do
It's just my kiddo doesn't fit inside the box at ALL
On anything he does so ......

When is your appt at cced ?
 
No appointment yet were getting all the paperwork and stuff together.

We had an illness go around the house on weds. Little Z threw up several times, my husband had a fever and the Itty bit has been vomiting off and on since Tuesday night.

Today little Z developed a rash next to his bottom lip. He says it hurts but doesn't itch. *shrug*
 
Rash has spread. It's covering the entire area around his mouth now. It's red, bumpy and patchy with areas of white flakes. I'm not sure what even caused this rash :/
 

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