Hi! I'm new! My daughter's scope was Monday...

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Momto2girls

Momto2girls

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May 18, 2012
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Hi! I'm new...my daughter is 4, she's been having GI issues for about 1.5 years, and on Monday she had a colonoscopy & endoscopy. The GI's nurse called today and said she had mild inflammation in her ileum & right colon. She said she's not diagnosing it right now. (But if she were it would be IBD.) She wants to try Sulfasalazine and Folic Acid for 2 months, and then she said she'd make a diagnosis.

Has anyone experienced this? I kind of thought it either is or isn't Crohn's or Colitis? Can it be a maybe? Or sort of? Could the inflammation go away never to be seen or heard from again?

My brother has Crohn's and both my dad and father-in-law have Colitis, so we don't have a very favorable family history.

Along with these medications do you think any dietary restrictions are necessary?

And does the Sulfasalazine cause side effect?

Does anyone know if this would be more like Crohn's or more like Colitis? Or does it matter?

I am just kind of feeling strange about what this really means. And all I got was this tiny bit of info from the nurse.

Thanks!!
 
HI Mom and welcome ! :)

do you have a follow up scheduled with your daughters doctor so that you can personally discuss the results of the biopsy results ? If not I would strongly suggest making one.
Also, you can request a copy of the pathology report for yourself so you can read exactly what the biopsies read.
Did the nurse happen to say if the inflammation was "mild" or "chronic" ?

Sorry for all of the questions instead of answers :)
You may want to take a look at our treatment section of this forum ~ there is a lot of information on Sulfasalazine's and pretty much every other drug used in IBD treatment.

Your daughters story sounds similar to my daughters, except mine was 9 when she had her first scope and was suspected of having Crohn's. Her doctor also did not want to diagnose right away, even tho her biopsies showed granulomas and chronic inflammation throughout her entire digestive system. I was very naive when it came to Crohn's/UC back then so I was ok with that decision. We did a trial of Asacol for a few months, it seemed to help her, and then we were ordered to d/c use and call again if she had anymore problems, and they would just watch and wait.
That was a huge mistake on the doctors part, and we didn't even know it until she was 16 years old and there was a ton of damage done because she had gone untreated for so many years. I'm not trying to scare you by any means, just inform. Sometimes we have to push, and push and push the doctors to listen; and with your family history already, If I were you I would want to know for absolute certain that this is the right course of treatment for your baby girl :)

Best of luck to you and I'm sure many other of the kind parents and others here will be along shortly to help and welcome you more !
Again, welcome, and feel free to ask ANY questions.
:ghug::ghug:
 
Hi and :welcome:

I'm sorry to hear your little one is having problems...:hug:

Hmmm...it would normally be a tad too early for biopsies to be back, I assume biopsies would be done, so I don't know why the GI would say it could be IBD, here take this and we will see in two months, particularly in view of your family history. From where the inflammation is described as being located if your daughter does have Crohn's then it would be Ileocolitis which is the most common type.

It could be possible to have one flare and that is it but that would be on rare side.

The Folic Acid is a supplement and the Sulfasalazine a mild drug. It is the precursor to the more modern 5ASA's, have a look at this thread. Although your daughter is young you may want to consider looking into Enteral Nutrition (EN). Although Crohn's can be difficult to diagnose at times I think the GI needs to make a stand one way or the other so you don't lose precious time if it is indeed IBD. Seek another opinion if need be to get things moving. EN is particularly successful, as successful as steroids, in inducing remission in children when used as a first up treatment and there are quite a few parents here that have or have had their children on it.

Please pop by the Parent's Forum as you will find loads of kindred spirits there!

Another hot topic in the parent's forum is Low Dose Naltrexone (LDN) so another thing you may like to read up on and store in the memory bank. :) It doesn't work for everyone but then that can be said for every aspect of treatment with CD from diet to drugs.

Okay, in my travels I see I have been way too slow and T has already given you fab info and direction! :thumleft:

Good luck and welcome aboard!

Dusty. xxx
 
I am working on getting the labs but the GI who did the scope still hasn't signed off on them! So frustrating! So I think they are sending them to her allergist (she also has severe food allergies) and I am hoping I can talk them into giving me a copy. This GI clinic has been really unresponsive. It is hard to get any answers.

She did say mild -- but this was the nurse's summary. So I have lots of questions back at the GI but of course I doubt I'll hear back today. So can mild inflammation be from something besides IBD? Is the idea if she feels better on the medicine then it was just nothing?

THanks so much for your warm welcome!! : )
 
Good lord! You are in the Parent's Forum! I thought you were in the Your Story Forum...won't be long now...
th_crazy-2.gif


Dusty. :)
 
Hi,

Sorry to hear about your little girl! :( She's so young, I hope her symptoms haven't been too severe!

Given your family's history, I would also want a follow-up apptmt with the GI, not just the nurse's conveyance of the GI's comments.

IBD can also display a number of EIMs (extra intestinal manifestations), I would imagine that 'inflammation' caused by some other reason may not cause these EIMs (someone correct me if I'm wrong!) - prior to being diagnosed, my son displayed a number of symptoms (not necessarily all at once) had a sore back, weight loss, paleness (anaemia), lack of appetite, fatigue, off/on again fevers, canker sores and night sweats (as well as some GI symptoms of heartburn and diarrhea). Other EIMs could also include joint pain, rashes, eye inflammation. I would imagine that if you daughter is displaying a number of these symptoms, this would add credance to an IBD diagnosis.

My son's treatment has been Enteral Nutrition since his diagnosis (his only medication being an antacid). You'll find lots of info on EN in this subforum as well as under the Treatment forum. Briefly, his treatment was 6 weeks of formula only, no food other than clear fluids (ie broth, 7-up, jello, etc.). The formula can be ingested orally (shakes) or thru an NG tube (which my son has done). After the six weeks, food is reintroduced and he has continued with the formula on a maintenance dosage (1/2 dosage, 5 nights per week - he ingests the formula overnight). So far, this has kept his symptoms at bay although some of his inflammation markers do seem to jump up and down. Unfortunately, it is not commonly used in the U.S. (perhaps because of patient compliancy??) but is commonly used elsewhere (it was the first treatment offered and strongly recommended to us). It has comparable success rates at inducing remission as steroids, no side effects, provides all the necessary nutrition and has anti-inflammatory properties. But, I would imagine it may likely be up to you to initiate discussion re EN with your daughter's GI.

If her GI is not receptive to further testing, questions, etc. can you possibly get a referral to your brother's, father's or father-in-law's GI (even if not a ped GI) - just a suggestion given that they would be familiar with the family history.

I hope some of this helps! It can certainly be overwhelming when you must accept the diagnosis (or even possibility), learn and make decisions quickly!

Good luck!!
 
You guys are SO awesome!! Thanks SO SO MUCH!! I cannot tell you how nice it is to hear SOMETHING! Our children's hospital here is really good in a lot of things but many people have said GI is not their strength. They are just too busy to be effective!! We have a f/u appt on June 11 but that's still several weeks away? I left a message on the nurse's line with lots of questions and said maybe the GI could just call me? She has called herself once before so I know she will from time to time.

My daughter's symptoms started with bladder spasms/overactive bladder/abdominal pain. They said they were caused by constipation (which was x-rayed and mild at the time). But even with mild constipation some kids are sensitive enough to spasm. They suggested miralax and told us no food dyes/citrus fruits or juices, etc. We found the food eliminations to be most helpful. But, we did a 1/2 capful of miralax a day for over a year. Until we noticed her tummy aches were worse and she'd turned to all diarrhea. Her ped x-rayed her again and she was severely constipated/impacted. So we did a cleanout and when "nothing changed" on the next x-ray we went to GI. We finally got a near normal cleaned out bowel, but she got re-plugged up really quickly while still on 2 laxatives a day AND 2 capfuls of miralax a day. So that's when we had to clean her out again (6 capfuls of miralax for two days in a row). And they scheduled the scope.

In the meantime she started prevacid and is sleeping thru the night for the first time ever in her life! She still doesn't have normal stools. She does have joint pain and rashes (but she also has eczema).

My brother has kept seeing his doctor from out of town where he went to law school -- so he flies there a couple of times a year -- it is about 500 miles away. I do think I will try to find someone to give a second opinion??

OK I am off to pick up kids from school and get the medicine from the compounding pharmacy and stop by the allergist to see if they have anything to say about it? (We were trialing no dairy, so wondering if he still wants us to continue that?)

Thanks again!!!
 
:bigwave:and welcome. Sorry to here about your situation.
My little farm girl (Grace) is 3 and she's been ill or "off" for 2 1/2 years.
She's suffered for abdominal pains, stomach pains, knee pains, pee-pee pains. Lately she's also show constipation, eye pain and MIGHT be getting C. Diff back for the third time. I tell you all that to let you know that their might be other signs you can look for, that might have to do with Crohn's or UC.
Grace has yet to be seen by her new pead. GI. I know first hand how it's hard to wait to find out. I've read more then I've read in years. I agree with don't take a wait and see approach with crohn's. I'm a naturalist, meaning I use vitamin and herbs for healing IF possible! I would NOT do this for Crohn's. It's been shown better to treat NOW and they'll usually have a better future ahead! They'll still have crohn's but more treatable! Well I hope you find answers here and ask questions, PLEASE!
:soledance:Farmwife
 
Hi welcome to the forum. Sorry to hear about your little one. I'm not sure how long biopsies take to come back - a maximum of around 3 weeks I would imagine. It would be worth insisting on trying to actually see the GI so that he/she can show you images and results of everything. I never understand how they can just tell you over the phone, especially when you are waiting for diagnosis and are worried!
Hope it all goes well with the new meds and she feels better soon.
 
So I am confused b/c I thought this was what they learned from the biopsies?? Maybe not?? I am so frustrated b/c med records said the results are not signed off on and will not release them. But, GI says that they are signed off on but we have to go through med records. Gah! So, no official reports yet. Plus the nurse said the doctor was not going to be able to call me until Monday afternoon. So, now it is just waiting...

I will for sure check out the diaries! I am always trying to keep a symptom diary but I am never consistent but maybe with a specific form I'd be better? Plus, I have more a of a reason now, ya know?

We did pick up her new meds. I am PRAYING she likes the flavor. She is SO picky!!

I am wondering if there are any dietary restrictions I should try? We were going to trial no milk, but I guess that wasn't the problem after all?
 
Have you look into Enteral Nutrition yet? I thought about trying it if Grace flares up before her GI app. At least I know she's getting her nutrition. Is your girl having problems now or is she stable? At the beginning Of Grace's problem the doc said no milk. Two years and we found out she's not allergic.:ymad:

Farmwife

PS I don't know about food changes other than what you know is bothering them. Keep asking some one will be of more help then me.:ytongue:
 
Last edited:
:bigwave: Glad you found this place.
There is a lot of info on the diet and foods forum on what to eat and what not to.
Basically it depends on what works for your kiddo.
WE give DS Pepatmen jr. with prebio (3 cans ) a day to help keep his weight up. EVen when crohn's kiddo's aren't flaring they seem to have weight and growth issues. the formula helps with that.
DS was dx at age 7 and is now age 8.
He was given pentasa and nothing much else since our first GI was sending us for a 2nd look at another GI he didn't want to start pred incase there were any more tests. WE then convinced GI #1 to let us try EN. WE did no foods for 9 weeks it helped a lot.

DS had a granuloma in his cecum as well as inflammation (mild) in his TI, stomach, and duodenum.

He is now on 6-mp, asacol and allpurinol plus prevacid.
He is failing the 6-mp due to liver stuff so we may be rescoping and moving to remicade.

Hope you can get some answers soon. I have learned to push a lot in these past few months.
 
So right now it just seems within 4-5 days of a cleanout she's back to straining and having diarrhea, which makes me think she's constipated/impacted again -- and she has tons of undigested food in her stool. She's always complaining of her tummy -- and tonight had a new rash on the back of her neck. The prevacid helps her a lot! In fact, I think some of the pain she's SO used to she didn't even notice it before? But I am not sure she impresses the doc as a super-sick kid?
 
It's funny how you said she doesn't impress on the doctor how sick she is!! My son was the same (as he still grew and never lost weight) - we were sitting in the kids ward (before diagnosis) when he had been off school with a bad tummy pain, the doctor comes in and asks him how he is - he says "fine" :lol:
He's done that a few times till I told him to stop - think it's a knee jerk reaction when someone asks how you are. "Yes doctor, I'm bent double with pain and throwing up but I'm fine"
The diet question is constantly rearing it's head as I read this forum. Many Crohn's patient swear by changes in diets but the general doctor opinion - from the ones I've heard say "there is no scientific proof that changing the diet helps" so we were told to just feed my son as normal.
However after reading around, I have stopped popcorn, nuts, seeds and we are sticking to white bread/pasta for now. I also only let him have cooked vegetables as it's easier to digest and peel all his fruit.
 
I believe a low residue/fibre diet can help temporarily - not a very healthy diet for the long term but I think it can help alleviate some symptoms. And, as MLP mentioned, the nutritional shakes (Peptamin, Boost, Ensure) can help too. :ghug:
 
So sorry your little one has been sick, my boy had his scopes last week too and we are waiting for biopsy results.
Our GI is really frustrating too, never calls back, takes about 6 weeks for blood results etc etc so I know how frustrated you must feel. All we want to do is help our little ones as much as we can - but its difficult to do if you don't know what is going on, and no one explains anything to you.
Its very interesting reading this thread - especially about the kids 'not seeming ill enough' - for the Drs - my little ones Dr makes me feel like Im just wasting his time even though my little one definatly has problems.
I hope all the meds work for your little one, and she starts to feel better really soon. xx
 
It interesting that you mention white pasta, as she used to love whole wheat pasta (and that's all we eat) but lately she's refused -- saying it hurts her stomach. She'll eat white but has completely refused white.

She's only lost 2-3 pounds so far -- and she was on the "bigger" side to start with -- around 85th percentile -- so everyone seems pleased she's leveled out to the 50th percentile, and despite her dark circles under her eyes -- which we chalk up to allergic shiners -- since she does have allergies -- everyone thinks her energy is fine, etc.

My dad --who thinks he knows everything b/c my brother was diagnosed 19 years ago, when he was 18 -- says if you can't SEE it then it can't be that bad. And that inflammation is just inflammation -- nothing else. My brother's was diagnosable by x-ray and he had surgery within months. But, obvious he was much older and it was much more severe. I keep trying to tell him it is different in a 4 year old.

But I am curious -- can inflammation be ANYTHING other than IBD? Because I haven't been able to fine a thing...
 
Inflammation can be caused by various bowel infections and coeliac disease also causes inflammation. There are likely other causes for inflammation??

But there is inflammation and inflammation. The type of characteristics that IBD and coeliac inflammation produces would be different to that which is caused by a bacterial or viral agent alone.

Dusty. xxx
 
So they did a stool culture and tested for all of the various bowel infections prior to doing the colonoscopy/endoscopy. They were all negative. They also tested for Celiac and said it was negative (though I still have yet to see the results). I guess I am just trying to understand and I know I just need to wait until I speak to my doctor on Monday. (You should never get this kind of information on a Friday!!) :)
 
Good luck with your Dr's appointment on Monday, I hope you get all the answers (then you can tell us!!).xx
 
Hi there! When my daughter was 2yo she had scopes and we were told she had acute inflammation in her illeum. Doc said she likely has Crohn's but wanted to give it some time. She was put on Pentasa and had already started a probiotic. She improved and stopped having frequent bm's but was not growing much and having some belly pain. She was scoped again at age 3 and chronic inflammation was found and then she was officially dx with Crohn's (also granulomas were found in her colon). She is currently on a second round of pred and not responding very well. We are likely going to start EN very soon. Anyway, in her case the "key" in diagnosis seemed to be "accute" vs "chronic" inflammation. She recently had a CT scan that was normal. The GI we have now is talking about doing an MRE to look for strictures, etc. bc of her symptoms. No results were ever found in KB's blood work or intial stool tests except that her white count was a little elevated. Recently they started doing the fecal calprotectin stool test which does indicate significant inflammation for her. There is so much to sort out when trying to assess what's going on with little ones. I hope some of this is helpful, Hang in there and keep advocating for your child!
 
Thanks everyone -- KB, that is very helpful! I am looking forward to hearing what my doctor has to say. I do not know how fast the Sulfasalazine works, but she did have a normal stool this morning! And those are few and far between these days! Of course she's still on laxatives, so I'd love to see a normal stool without them, but we'll see what her doc says. I do think they want to see chronic and of course I guess I'll always be waiting for the other shoe to drop, but for now it seems the inflammation is mild (haven't heard the acute word). Thanks so much!!
 
Since you all have been SO helpful and are SO knowledgable, I am wondering what questions you'd suggest I ask the doctor when she calls today? I am trying to make sure I think of everything I might need to know as it is SO impossible to get her! :)

SO far I have:

Is the inflammation the cause of the constipation/impaction?

Side effects of the medication?

Dietary restrictions?

What did the scope rule out?

And if a diagnosis were to be made, what would it be and how will it be decided?

How will we know the medicine is working?
 
KB's mom said:
Hi there! When my daughter was 2yo she had scopes and we were told she had acute inflammation in her illeum. Doc said she likely has Crohn's but wanted to give it some time. She was put on Pentasa and had already started a probiotic. She improved and stopped having frequent bm's but was not growing much and having some belly pain. She was scoped again at age 3 and chronic inflammation was found and then she was officially dx with Crohn's (also granulomas were found in her colon). She is currently on a second round of pred and not responding very well. We are likely going to start EN very soon. Anyway, in her case the "key" in diagnosis seemed to be "accute" vs "chronic" inflammation. She recently had a CT scan that was normal. The GI we have now is talking about doing an MRE to look for strictures, etc. bc of her symptoms. No results were ever found in KB's blood work or intial stool tests except that her white count was a little elevated. Recently they started doing the fecal calprotectin stool test which does indicate significant inflammation for her. There is so much to sort out when trying to assess what's going on with little ones. I hope some of this is helpful, Hang in there and keep advocating for your child!
Click to expand...

Looking back, do you wish your doctor has done something differently when they discovered this at age 2? Or do you think this was just the inevitable progression of her disease? And what are her symptoms now?
 
Apparently the pathology is back and signed off on but the dictation from the doc who did the procedure is not signed yet. But I am at least going to pick up the path. But the medical records gal said what we really are going to want is the other report from the scope. So I am not sure when he'll finally sign it?!!?!? They said he is famous for not signing off. Gah! Well, anyway, I guess I can see the pathology?
 

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