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dannig

Joined
Nov 26, 2012
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hi ive just come across this site today and wondering if anyone can help. my little girl is 14 mths old , when she was 6 mths she had intussceptionand since then shes been like a different baby. she get alot of stomach pain ( can be awake hour on a night), alot of mucus and loose stools 4-5 times aday, she very fussy and her food intake is very up and down. she now not gained any weight in passed 3 mths so gone down 2 x centiles in weight, and can be very windy. she can have flare ups and things settle and few day / week later all flares up. she s been tested for allergies and cealiac, shes been on diary free , lactose free diets ! she s had barium studiea and ph studies for reflux all find. hewr stool sample the other day came back positive for imflamation and blood. we are due to go on 30/11/12 for a colonoscopy but im going insane waiting and sleep deprivation doesnt help anyone any ideas ??????xx
 
Hi and welcome.

My Grace is almost 4 and has been ill since 6 mo. old. She had a bout of c diff and like your has never been the same.

First have you heard of EN?
Has she been to the GI?
Have you seen the blood? Not that you have to.
Does she have any other symptoms? Joint pain, eye problems, skin rash or anything else?
Her stool test positive but did her blood test show any levels that were off?

Last but not least...it will be OK!!! We've all been in your shoes. That's why this forum is here. Your not alone.
 
hi
not heard of en ?
yeah we have two gi s who sorted all these test out but keep saying cud be something she grows out of etc.
yeah she s had fresh blood in the past but now its either black or unseen.
she seems to get very run down but only things like conjuntivitis and thrush/ blisters in her month. we had week in hospital few weeks ago with beeen sick for 10 plus days very dehydrated doc said she also had tonsilitas but then when he checked two days laater there was no sign of tonsilitas??!!
they ve not really mentioned anything in her bloods just her white cell alittle raised i think they said ???
thank you x
 
OK, look into EN hears a link
http://www.crohnsforum.com/forumdisplay.php?f=161
This is a liquid supplement. It's been a life saver for Grace. Some of these kids live on this for 6-8 weeks. It gives them bowel rest and time to heal. But it gives all nutrients and CALORIES to live on. Grace still eats food but we supplement 3 shakes a day. That way if she doesn't eat much for dinner I know she's still getting what she needs.
I'll tag Tesscorm or crohnsinct to tell you more about EN.

Canker sores can be common in IBD.
You DO NOT need blood levels to be off on a test to have IBD.
My Grace is fine but she now has blood in her stool.
Dark blood means bleeding higher up in the GI track.
Bright blood means colon or rectum.
Is her bowel movements painful?
 
shes currently on paediasure milk shakes and infatrini milk for nutritan and weight gain as they dont think she digesting anything. her food comes out as it went it etc x
 
Hi dannig and welcome :hug:

We're glad you found us here, and hopefully we can give you a bit of support that you need.
Has your daughter been prescribed any medications to try and help with the pain while you wait ?
Sometimes a heating pad can help ease the pain a little ~ maybe trying while she is snuggling with you ? Just don't set the temp too high, or leave it on for long periods, she is very young :eek:

There are some other parents on here who's children were diagnosed very young also, so hopefully they will be around soon :)

I'm glad that you have had the test you have done so far, and it seems they are moving quickly. I know it must seem like a life time away to wait these next four days for that scope :ywow:
Take a deep breath mom, and try to relax. You can do this !
I hope very much that there is an answer and treatment for your baby after the colonoscopy :heart:
 
thank you for your messgae , we tried alsort s of meds for pain and to help slow down her digestion etc but nothings helped so far . There reluctant to put her on anything till they no what it is ....... Roll on Friday xxx
 
Sleep when she sleeps mom. No matter what, no matter how long it is. Just like when she was a newborn.

Ask someone to watch her while you sleep. They can come and be in the house with her if necessary but it would be best if they could take her away from home so the sound of her voice doesn't disturb you. Even if they take her for a long walk in a stroller that's better than nothing.

You would probably be surprised how willing your friends and family are to help in this way. I expect they see you both suffering and feel helpless. This would give them something concrete to do they know will help you both.

It's good they're doing a scope this week. Hopefully that will give you some answers.

Hugs.
 
Hi there. I am so sorry that your little one (and you) are having such a tough time of it. I agree whole heartedly with Patricia. You need to rest and clear your mind so you can process any information you are given on Friday and can make clear decisions. You are not being selfish you are actually doing what you need to to be there for your little darling.

Yes, my daughter did 6 weeks of Enteral Nutrition on top of her Remicade and it helped her greatly. I am hesitatnt to suggest you do this now without a clear diagnosis and your docs agreement but it sounds like they are trying something similar on a supplemental basis already so maybe just read a bit about it and how it works and how it has helped others so if the dx is IBD and EN is mentioned you are aware of what it is.

Try not to get too ahead of your self though (says the mom who is always 5 steps ahead). This forum is an amazing place for support, laughs, information, questions you name it. But if you need to take a break for the next few days until you have a clear diagnosis, please do it. Don't worry, we will still be here on Friday (haha and any day after and at anytime of the day you will find one of us on here...we are a worldwide addicted community) and will be ready and willing to support you.

Sending lots of positive scope vibes your way and hoping that afterwards you have a clear picture of what is going on with your girl and a good plan in place. :ghug:
 
So sorry you are having to deal with this, hope the scopes can give you an answer and get you on a treatment so she is feeling better and you can all get some sleep.
Welcome to the forum by the way, lots of good advice and support here.
 
Thank you all for your lovely message / support ! Can I ask for those who gave children with ibd , do leyla symptoms sound like it could be ibd or any one got any other thoughts ? X
 
:hug:
Hi - sounds like you have been through a really rough time. I know it must seem like a lifetime to wait until Friday, but it will come round soon enough - and hopefully you will get some answers and will find out how best to help your little girl.
Freddy had the scopes when he was about 21months old, it wasn't as bad as I thought - I think you worry about it for days and when you actually go into the hospital adrenaline takes over - I thought I would be a mess but was actually quite 'together' all things considered. I thought the worst bit was the anaesthetic induction and before that just waiting for things to get started. (the prep for the colonoscopy was not great either!!).
I guess she had surgery for her intussuseption? could there be a stricture or adhesions resulting from that which could be causing some of her symptoms?
I think I would not change too much until after the scopes incase it affects the results. - Not too long to wait now - as others have said rest when you can.
:hug:
 
Well, given our experience and anything you read here, yes they do "sound" like IBD but that is who and what we are and what we know. I imagine it is possible it could be a number of other things. Hopefully you get some nice clean scopes and the doc will be confident with a diagnosis.
 
Since, I'm not a medical professional it could be any number of things and I hope for you all it is something minor and easily fixable. That being said, the blood in the stool, and inflammation, weight loss, failure to grow are some common signs of ibd. Although my son was much older when he was dx'd he did not eat at the time whether subconsiously or not he associated food with pain.
 
Symptoms of EGID?
What are the Symptoms of EOE?
Symptoms vary from one individual to the next and may differ depending on age. Vomiting may occur more commonly in young children and difficulty swallowing in older individuals. SYMPTOMS MAY VARY GIVEN THE DEVELOPMENTAL ABILITY AND COMMUNICATION SKILLS OF THE AGE GROUP AFFECTED. It is not unusual for it to take several visits to the physician before eosinophilic esophagitis is diagnosed. Some symptoms are common to all age groups.

Common symptoms include:
Reflux that does not respond to usual therapy (medicines which stop acid production in the stomach) – infant, child, adult
Dysphagia (difficulty swallowing) child, adult
Food impactions (food gets stuck in the esophagus) older children, adult
Nausea and Vomiting – infant, child, adult
Failure to thrive (poor growth, malnutrition, or weight loss) and poor appetite – infant, child, rarely adult
Abdominal or chest pain –child, adult
Feeding refusal/intolerance or poor appetite – infant, child
Difficulty sleeping due to chest or abdominal pain, reflux, and/or nausea – infant, child, adult
What are the Symptoms of EGID?
Symptoms may vary considerably, depending on the area affected.

Symptoms include:
Nausea or Vomiting
Diarrhea
Failure to thrive (poor growth or weight loss)
Abdominal or chest pain
Reflux that does not respond to usual therapy (which includes proton pump inhibitors, a medicine which stops acid production)
Dysphagia (Difficulty swallowing)
Food impactions (food gets stuck in the throat)
Gastroparesis (Delayed emptying of the stomach)
Anorexia (poor appetite)
Bloating
Anemia
Blood in the stool
Malnutrition
Difficulty sleeping

Since none of these symptoms are specific for EGID, and many occur at times in healthy children or adults, the diagnosis is generally sought only after the symptoms have failed to resolve. Eosinophilic disorders can mimic the symptoms of other diseases like inflammatory bowel disease, food allergies, irritable bowel syndrome and reflux, among others.

© American Partnership for Eosinophilic Disorders 2008, 2010, 2011
Revised 4-10-2011. Authors: Wendy Book MD, Harvey Leo MD
Contact [email protected]
Click to expand...

Again not a doc but have they looked at egids .
It is something else seen in the very young and has some overlap with Ibd.


From:
http://apfed.org/drupal/drupal/symptoms_of_EGIDs
 
Sorry to hear about your little one! My son was 12 when diagnosed with Crohn's, so I don't really have any experience dealing with such a young child with these problems. I really hope you manage to get something sorted soon, so they can give a treatment asap.
 
In general, I think it is best to focus your energy on making sure that your daughter's doctors are doing a thorough and methodical assessment of her symptoms and any test results like biopsies.

When possible get the best doctor you can for procedures, ones who have a strong reputation in that field and with children that age.

If there is uncertainty about diagnosis that involves biopsies then get a 2nd opinion from another highly respected pathologist who specializes in that field.

Because we are all wearing "IBD" glasses we will tend to see IBD everywhere we look. There is a strong chance that it is something else entirely going on with your daughter. I can think of at least 4 things right off the bat and I'm not even a doctor.

For us to speculate with you at this point would do you a disservice in my opinion. You have scopes scheduled in 4 days which will at least rule some things out.

If you need something to do in the meantime, I would be looking into who are the best pediatric GI doctors in your country - yes I mean the whole country.

Don't worry about whether they are easy for you to access through your local health program. Don't worry about how you would get there if they are far away. Just find out who they are and how to reach them in case you need them.

You can also find out which is the best Children's hospital for treating pediatric GI patients in the UK and how your local hospital rates in the treatment of pediatric GI patients. For example, is there a pediatric GI? a Pediatric GI surgeon? A pediatric intensive care unit?

Sending loads of support and wishes for a good night sleep.
 
Hi dannig and welcome

Sorry to hear about your little girl. I hope you get some answers on Friday...

Take care mom...:hug:
 
Have you talked to your pediatrician about a special formula to ease her digestion and help her eat a bit more? Here in the US we used Nutramigen for our youngest for basically her entire infant life. It was the only thing she'd keep down and the only thing that didn't give her incredible diarrhea. I'm not sure if EN is suitable for infants, nor am I sure what the equivalent of Nutramigen is in the UK, but your doc should know.

It's very expensive, but our insurance covered it.

PS - our little one turned out not to be diagnosed with IBD of any kind, at least not yet. We were very worried because of my history and my oldest daughter's history, but so far so good with Izzy, though the Nutramigen was still a life saver.
 
Thanks for all these lovely emails and support I'm very greatfull, I will look into all all the info given thanks!
Muppet .... Leyla has been on nutramigen and neocate and unfortunatly neither helped , thanks for your messages , she s now now on nutrini milk andNpeadisure milk shakes for weight gain Nd nutritain xx
 
The only other one which sometimes helps in kiddos is elecare which some tolerate when they don't tolerate neocate.
Hugs for lots of rest and a speedy week.
 
Good luck with the scopes today dannig. :hug:

I hope your little one is okay, bless her, and you are able to get some solid answers. Please keep us posted on how things go!

Dusty. xxx
 
Dennig - good luck with the scopes today. I really ment to reply to your post earlier. My daughter lucy aged 4 was diagnosed 18 months ago at 2 and half. She was showing some symptoms from 9 months and got really sick at around 15 months. It was very hard to pin point exactly what the symptoms were at time but knowing what I know now it was the Crohn's. At 9 months she got a serious exacerbation of mouth ulcers and was hospitalised for a few days for iv fluids - this was diagnosed as hand foot and mouth disease, she was ok after that for a few months and then she started vomiting, getting high temperatures, was covered in a scaly type rash. passing blood and mucus with her stools and screamed doing a bowel movement. She lost a huge amount of weight and looking back she was very sick. REading what I have read about your little girl so far, there are definately similarities with what lucy went through. One thing I would say is that if she does have some form of IBD you are so lucky to be getting it diagnosed now. While 18 months on Lucy has not achieved remission she is still a million times better than what she was before her diagnosis so what I am trying to say is getting a diagnosis is a good thing, at least you can put a name on it, deal with it and eventually learn to live with it.
I dont know if you little girl has IBD but I do know how worried and stressed you are with all this going on particularly that she is so young, as I have been through it myself so I am here and thinking about you and I hope and pray that you get some good news

polly
 
Thanks again for all the messages , it's been a long couple of day but glad it's over with !! Unfortunatly I'm non the wiser the doc just said the stomach and colon looked fine but there was contact bleeding in the small bowel ???? Not sure what that could be ! He s taken loads of samples but I now have to wait 3-4 weeks for the results !!!! Just want to no what's going on , think that's one of hardest parts about all this so far not knowing !!! Xxx
 
Sorry - no idea on the contact bleeding. It is frustrating having to wait so long for the results! Hope it comes back quicker than 3/4 weeks. Hope you get an answer soon.
 
Thanks for the update dannig...:hug:

I hope the scope does provide you with solid answers.

Without suggesting anything is awry, contact bleeding would mean that when the scope passed over the area some bleeding did occur and for that to happen it would normally mean the surface of the bowel is somehow compromised/weakened e.g. inflammation.

Good luck!

Dusty. xxx
 
Hugs....
The wait is long but soon you will know and have a true plan and get your lo better .
I have learned this past year that nothing in Gi land is ever fast.
Not the dx or meds.

It will be ok just vent to us for the next few weeks we will be here for you.
 
Glad the scope is over. I know what you mean about the waiting. Hopefully it will go fast! Sending you hugs!
 
Welcome to the forum and hoping the results give you some answers!! We had contact bleeding when we had a lot of inflammation-when the scope touches the intestinal wall it bleeds. Hope the next few weeks passes quickly for you!!
 
izzi'smom said:
Welcome to the forum and hoping the results give you some answers!! We had contact bleeding when we had a lot of inflammation-when the scope touches the intestinal wall it bleeds. Hope the next few weeks passes quickly for you!!
Click to expand...

thank you for your message , how old was your little one and was she diagnoised with ibd ? I'm confused as I thought crohns effected all way up so wouldn't he seen other effected areas ? Why just small bowel ? Xx
 
I guess she's had the main test that shows crohn's now.Cross fingers that they find out what's wrong but if it does turn out to be crohn's/colitis,sounds horrible but it isn't the worst of times as the treatments now are far better than years ago.The way they keep coming up with new ways of halting the process shows that the're making good progress.Once diagnosed she can then start a course of treatment to get on top of the flare up.Can't lie and say everything will be fine because we all are in different stages.ie.cronic or controlled.I suffer pretty bad but my sister who has crohn's too has no trouble other than her original flare up.All she has to do is watch her food and the meds do the rest,so there is always a possibility that she can be controlled easily.All our love and courage for you and your family
 
Hey dannig,

Crohn's can affect the GI tract anywhere from the mouth right through to the anus. Some people can have patchy distribution of disease throughout the GI tract but is is generally broken down into 5 types that are characterised by their location:

Ileocolitis: Ileocolitis is the most common type of Crohn's disease. It affects the small intestine, known as the ileum, and the colon. People who have ileocolitis experience considerable weight loss, diarrhea, and cramping or pain in the middle or lower right part of the abdomen.

Ileitis: This type of Crohn's disease affects the ileum. Symptoms are the same as those for ileocolitis. In addition, fistulas, or inflammatory abscesses, may form in the lower right section of the abdomen.

Gastroduodenal Crohn's disease: This form of Crohn's disease involves the stomach and duodenum, which is the first part of the small intestine. People with this type of Crohn's disease suffer nausea, weight loss, and loss of appetite. In addition, if the narrow segments of bowel are obstructed, they experience vomiting.

Jejunoileitis: This form of the disease affects the jejunum, which is the upper half of the small intestine. It causes areas of inflammation. Symptoms include cramps after meals, the formation of fistulas, diarrhea, and abdominal pain that can become intense.

Crohn's (granulomatous) colitis: This form of Crohn's disease involves only the colon. Symptoms include skin lesions, joint pains, diarrhea, rectal bleeding, and the formation of ulcers, fistulas, and abscesses around the anus.

There can be overlap between these types of Crohn's disease. Some people have more than one area of the digestive tract affected.

http://www.webmd.com/ibd-crohns-disease/crohns-disease/5-types-crohns-disease
Click to expand...

Both of my children have ileitis so the disease is confined to the part of the small bowel called the ileum.

Hope that helps!

Dusty. xxx
 
Crohns can be only in the colon. I believe the Dx is Crohns Colitis then. The difference between the two is with UC it is always rectal and moves up and through from there. Never intermittent. You can have Crohns anywhere from mouth to anus vs UC where it always starts in the rectum and moves its way up never reaching small intestines. No granulomas with UC either.
 
Ahhh...I could also have shared that Izz was initially diagnosed with UC. She has complete large intestine involvement with no other symptoms but a granuloma was found on one of her biopsies confirming a crohns colitis diagnosis. She is treated a bit like UC patients, though as far as treatment is concerned. She HAS had mild gastritis, likely from all of the meds she has been on, and sores in her mouth, which her mother (of the year) assumed was her Crohns but was actually the very communicable fifths disease. Bad, bad mother lol! Thank goodness her friend and her brother caught it so I knew it wasn't Crohns. ;)
 

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