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04-30-2012, 02:51 PM   #1
Suzysu
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Crohn's in a toddler?

Hi! I am totally new to this type of thing! I have read some of your stories and they are heart wrenching - I hope you all get answers or at least useful medications soon!
My little boy (youngest of 3 - so I know what normal childhood illnesses are like) has had vomiting and Diarrhoea since he started on solid food (nearly a year and a half ago). The diarrhoea is nearly constant (he will do the occasional normal motion) and the vomiting comes in bouts (roughly every 10-14 days lasting 4-5 days), he seems to be in discomfort and sometimes severe pain (rolling around on the floor screaming, won't let me touch him). He gets lots of mouth ulcers, and seems have extreame teething episodes (dribbling like he cant swallow etc), He has had a couple of bouts of bleeding around his anus (has small erosions - like the top layer of skin has come away in patches), and gets odd rashes (legs, face, tummy). He has a persistent iron deficiency anaemia despite supplementation, and a few other abnormal blood results. We have been to GP's, health visitors, paediatricians, Paediatric gastroenerologist - and have had every comment from 'well he's just going to be small', 'he has a virus', to 'Mrs x - you have a 100% healthy baby boy'. I have been made to feel like I am making a massive fuss - to the point where I actually question myself. He is due to have a barium swallow on Thursday and endoscopy and biopsies in a couple of weeks - I am terrified that they will find something and just as terrified that they will find nouthing!!
We have no crohn's disease in the family (that I know of) although I suffer from 'IBS' caused by stress (sickness, constant diarrhoea, abdominal pain, weight loss - no IBS medication has ever helped, recently I have had mouth pain - like the skin on the roof of my mouth and gums has come away and extreame fatigue - put down to having 3 children under 5) - I had just accepted the Drs Dx of IBS but after reading everyone's stories I'm wondering if they are wrong!!
But I'm really on here for my son - I know its very rare in a child so young (22 months now), but has anyone else been through anything similar?? I feel a bit like I'm just some crazy person!!

Last edited by DustyKat; 04-30-2012 at 04:02 PM. Reason: Icon added
04-30-2012, 04:10 PM   #2
Lilmamma
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First of all, you are NOT crazy. You push the Dr's to find answers. If that Dr won't work, find another Dr. Keep going until you find someone that will give you the answers.

Did the Dr mention a colonoscopy? My 10yr old just had an endoscopy and colonoscopy with biopsies. They were able to find evidence of Chron's disease during the colonscopy and the biopsies confirmed. There was no evidence of Chron's disease during the endoscopy.

We were told that my daughter would just be small in stature. My mom is 4ft 11in and I'm only 5ft 4in. I also was very tiny when I was younger. However, during that time, she didn't have any of the stomach problems/diarrhea that she has now.
And yes, you can be diagnosed at that young of an age. Our GI said that his youngest patient is 18months old.

Please keep us informed as to how the scopes/biopsies go.
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04-30-2012, 04:20 PM   #3
Sascot
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Poor little boy! Don't ever feel like you're making a fuss - there is nothing worse than watching your child suffer. I know how it feels to want something done but not wanting a bad diagnosis. At least you will know for sure after all the tests and then best of all you can get some treatment for him. Good luck for the tests! (If it comes back positive it might be worth getting yourself double checked)
05-01-2012, 05:47 AM   #4
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Hi Suzysu and

I'm so sorry to hear about the problems you little boy is having, bless his cotton socks......and you are far from crazy! I know it is hard not to start questioning yourself when the ones you turn to for help just blow you off but you are the one that knows your baby best Mum and you always will. Your little guy has something going on and no mistake so hun!

Many of the symptoms you have listed fit IBD including the intestinal and extra intestinal plus abnormal blood results. I so hope the results are able to give you solid answers and your boy is able to find relief very soon!

I know you will always put your children first, don't we all!, but I think when you do get a spare second you best have yourself checked out again. It surely sounds that your own symptoms exceed IBS.

I wish you both all the very best! Please keep us updated on how you are both doing. Good luck and welcome aboard!

Dusty. xxx
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05-01-2012, 07:23 AM   #5
Suzysu
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Thanks so much everyone!! At least I feel like I'm not alone!!
My 2 older children are quite tall for their age and probably look like they are a year older than they are, my yongest is nearly 2 and his 12-18month clothes are still all baggy\ long on him - I could understand him being small if the others were also small for their age. He does look a bit weedy but is quite active considering his iron levels are so low! - the worst thing is other peoples responses I stopped going to places like toddler groups for a while after one mother asked how old he was and when I told her she just said 'oh' and gave me such a strange look - I nearly grabbed him and ran out in tears - but managed to hold it together!!
I'm not sure why the Dr's are not doing a colonoscopy under the same GA as the endoscopy especially since his most consistent sign is diarrhoea - I will ask when we go in - the gastroenterologist is really intimidating and unapproachable and also impossible to get hold of!!
Thinking about it I am prepared for what may be wrong with him, but dread them saying they can't find anything - as It is so hard seeing him in pain and discomfort - anyway I will just have to wait and see!! - I will let you all know what happens!! and thank you once again for your support.
05-01-2012, 10:59 AM   #6
izzi'smom
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Just wanted to say I am so sorry you are going through all of this! I agree that a colonoscopy sounds warranted...especially if they are already doing an upper. You are not crazy...you know best, mama! Hang in there, and hoping for an answer for you soon... I also highly recommend a second opinion...sounds like your GI and you are not on the same page
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05-01-2012, 01:04 PM   #7
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Keep going until you find answers. Some doctors are just not used to seeing kids with IBD and therefore it is not on their rador. Definately sounds like a colonoscopy is warranted and that should be definitive one way or another for chrons.

Please keep pushing your doctors you are the mom and you know best. My daughter started displaying symptoms at 9 months and it took until she was 2.5 to get a diagnosis and like you I felt nobody was listening to me and while there may be nothing serious wrong with your little man you still need to satisfy yourself that that is the case and the only way to do that is find a doctor you can trust and have faith in their abilities. I wish you the best.
05-01-2012, 02:02 PM   #8
QueenGothel
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I agree with all that have already responded. Not much more to add. I hope you find an answer soon. Yes, and if they are going to do an upper and knock him out why not do the colonscopy and have everything answered at once? Seems like kinda a waste of anesthesia to not get the lower. Especially since you have saw blood. I would get a new GI without question. My best to you and your little boy. I hope he is feeling better soon. Take care.
05-01-2012, 03:10 PM   #9
Suzysu
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Thanks once again everyone!
The paediatric gastroenterologist (who will be called 'top gastro guy' from now on) is president of the paediatric gastroenterology and hepatology association, author of a few papers, and also teaches at medical schools - I'm guessing (or at least hoping) you don't do all that unless you are pretty good - so even though he is one of the most odeous people I have met I'm not sure I should change - yet anyway! (even if I did I'm not sure where I would go! - I'm not sure you can change Dr's like that in the UK).
Polly - what sort of symptoms did your little one show? did she have an endoscopy and a colonoscopy under the same GA?
I'm not sure what to do about broaching the colonoscopy subject - I guess I will wait until after the barium study, and then check with someone.
OK - odd question - how long does everyone think it takes for Oreo's to travel through (if you know what I mean!!) My little one had 6 mini oreos at 11am and a whole load of foul black diarrhoea at 5.30-6ish - also does iron supplementation cause deep pink (like thousand island dressing just much darker) or black sticky diarrhoea - I have tried to explain it to top gastro guy and he says its the supplement however I'm a vet and if any dog had poo like this I would be really worried - but then we don't really use iron supplementation in dogs!!
05-01-2012, 03:18 PM   #10
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M DD gets green poo from her iron... Ferrous Gluconate. B4 it was black from Ferrous Sulfate.
05-01-2012, 03:29 PM   #11
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Thanks once again everyone!
The paediatric gastroenterologist (who will be called 'top gastro guy' from now on) is president of the paediatric gastroenterology and hepatology association, author of a few papers, and also teaches at medical schools - I'm guessing (or at least hoping) you don't do all that unless you are pretty good - so even though he is one of the most odeous people I have met I'm not sure I should change - yet anyway! (even if I did I'm not sure where I would go! - I'm not sure you can change Dr's like that in the UK).
If he refused a colonoscopy and he is sedated anyways. I would ask him why he is not planning to do one. And then still be pushy if I wasn't satisfied. Lol

I would just be worried with all that he is doing when does he have actual time to be a GI? Rowans first GI (that I fired) was the director of gastrolentrology and had his own research lab... Low and behold his time was used up and was over working himself, he didn't call me back in a very timely manner bc of his many responsibilities. Rowan fell through the cracks twice bc of this mans busy life. Not saying your guy is not the top gastro guy or that he doesn't have time. Just saying sometimes a title isn't worth squat if you base it only on paper alone, having your finger on the pulse is... Ya know.
05-01-2012, 03:41 PM   #12
Suzysu
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Myreinhard - I get the feeling top gastro guy is similar to your 1st one - my little one had blood tests on 26th March and despite repeated phone calls to gastro guy's secretary no one has been able to phone me back and it's been over a month!! - I had to beg the secretary to fax me the results, work out what they all ment myself, and call my GP about the ones I was worried about!!
I will wait till after the barium study and the endoscopy (and will hassle about a colonoscopy). But I do feel a strongly worded complaint letter to the head of the hospital trust coing on!!
PS - My little one is on Ferrous sulphate so hopefully that accounts for the foul black diarrhoea (although he only gets this occasionally - I would have thought that if it were down to the supplement it would be all the time).
05-01-2012, 04:09 PM   #13
QueenGothel
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Sulfate is very constipating for my DD that is why we do Gluconate and it is easier on the tummy. She takes 2 pills a day instead of one.
05-02-2012, 12:37 PM   #14
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where I would go! - I'm not sure you can change Dr's like that in the UK).
Polly - what sort of symptoms did your little one show? did she have an endoscopy and a colonoscopy under the same GA?
!!
Suzysu Lucy had her endoscopy and colonsocopy on the same day. We had to come back another day for the barium swallow as this invovled swallowing liquid and having a series of x rays over a couple of hours. this test gets pictures of the intestine that cant be seen on the endoscopy and colonsocopy. Re-reading your post Lucy's symptoms were similar enough to what your little boy experiencing, she vomitted on and off for about a year, then the crying started when she was doing her poos even though she wasn't ever constipated (despite the paed telling me she was) - and the poos were quite loose. She had her first episode at 9 months - this was mouth ulcers (diagnosed as hand foot and mouth) but nothing will convince me that it wasnt the first manifistation of chrons.
In relation to you GI he sounds like a bit of an ass and if you could change you should. I dont know how you are set up acorss the water in the UK, but I imagine you have more than one chrons centre of excellence. It is so important that you get the right GI, you need to have confidence in them and their ability to treat your child.

Good luck
05-02-2012, 01:54 PM   #15
Suzysu
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Thanks Polly!
I am dreading trying to broach the subject of a colonoscopy with gastro guy as he is such an 'Ass' - even getting to speak to him may be impossible!! My little one has his barium swallow tomorrow, I am dreading the fact that he can't have anything to eat or drink till afterwards (appointment is not until 10am and that is assuming they are not running late!!), and trying to get him to lie still (or even lie down) is going to be a challenge!!
Did they find any abnormalities on the barium swallow with your little one?
In the bumf that came with the appointment it says it will take half an hour not hours (this probably means they won't xray when the barium reaches the terminal ilieum or colon! - just where we probably need to look!!).
My little one has a really red mouth, mouth ulcers, and bleeding cracks around his anus (sorry for too much info!) I bet if they did the endoscopy tomorrow they would find something - I also bet that in 2 weeks when he has the endoscopy he probably wont have any ulcers and they won't find anything!! I feel so depressed about it all, and feel like crying when I see he is in discomfort - I feel like I just can't deal with it anyore!!
Just one more question - Did your little one loose weight? The only thing that does'nt fit with my little one is that somehow (and I'm not sure how!) apart from some weight loss when we first saw the paediatrician at a year old he has maintained his weight - at the moment he is living off baked beans and bananas - he just won't really eat anything else!!
I am rambling now so I had better stop!!
05-02-2012, 01:59 PM   #16
Suzysu
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Polly - Just read your post again - Freddy was on laxatives for ages, despite him never being constipated (and I mean never) - gastro guy said Freddy had a immature gut (toddler diarrhoea) - not really sure where the projectile vomiting fitted in with this diagnosis!!
05-02-2012, 02:07 PM   #17
QueenGothel
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If it makes you feel better (probably won't) but Rowan couldn't eat for two days prior to her surgery and after not for 2 more. So 4 days no food with a kid on high doses of predisone (makes them hungry). It stunk so I feel your pain.

FYI: I DON'T BELEIVE YOU CAN POST TMI ON THE CHROHNSFORUM FORUM. We all talk poop, blood, consistencies, vomit and sometimes all of it mixed together to describe food. Like it was like poopy, clotty, applesauce. Lol. Nothing can turn my stomach accept a rare cooked steak on a plate that I am expected to eat.

Rowan never swallowed the barium. Always had to knock her out and put a tube down her throat. Good luck!!! Let us know what the results are please.
05-02-2012, 02:13 PM   #18
Suzysu
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4 DAYS!!!!!!!!!!!!!!!! NO FOOD!!!!!!!!!!!!!!!!!!!!!!!!! NO WAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
RESPECT to you!! xx
05-02-2012, 02:39 PM   #19
QueenGothel
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2 of those days was no water either. Nothing by mouth, all hydration came through an IV.

That is nothing complared for kids doing complete enternal nutrition. No food, all tube feed for months at a time. Cannot imagine doing Christmas and smelling all the desserts and tell a kid sorry you can't have it. That would kill me.
05-02-2012, 04:12 PM   #20
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Suzysu, the black sticky "tarry" stool you describe is exactly how stool with blood in it is described.
I am beyond amazed at the treatment you're getting. Beyond.
It's baffling and I would urge you in the strongest possible terms to seek med care elsewhere.
Iron supplemetation CAN cause black/green colored stool but not foul smelling nor tarry.

Sedating a kid and not doing a lower scope when diarrhea is a presenting symptom is bizarre.
Anal fissures, mouth sores...these are classic Crohn's symptoms. As is growth delay and everything else you report.

I am in shock, and I can only imagine how you feel...so sorry to hear of your experience, very sad to hear about tiny babies with these symptoms.
PLEASE, please get him to another med center.

HUGS,
Julie
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05-02-2012, 04:45 PM   #21
Suzysu
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Julie - This is why I feel I am going mad, I am a vet and if a dog had the same presenting signs as my son I would assume he was loosing blood from his gut - which I would take seriously and I would have scoped and biopsied him months ago. Sometimes I watch Freddy playing and he seems so happy and active (despite the low iron levels and everything else) that I think maybe it is me just making a mountain out of a molehill - then I watch him shake his head as I put food infront of him, or screaming as I change his nappy etc and I feel like crying - I'm just so confused.
I can't really change hospitals as the other one near us has a bad reputation - but maybe there is another gastro guy at the one we are at - I am off to google it now!!
I will let you know how the barium studies go!
05-02-2012, 05:03 PM   #22
Suzysu
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I am a moron!!!!
Just googled hospital - our Dr is lead paed gastro guy, president of pead gastro association blah, blah, blah. - the other gastro guy may not be president, or head honcho - but has lead a research team into paediatric inflammatory bowel disease, worked at some of the top UK hospitals, is a specialist in nutrition for paediatric inflammatory bowel disease etc etc - I will find out how I change Dr's tomorrow!
05-02-2012, 07:12 PM   #23
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God love you guys...best of luck.
Insist on scopes. With your med background you know that stool looks pos for blood. God, did they even test for occult blood on the stool?
05-03-2012, 05:49 AM   #24
Suzysu
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ARRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRG
one mouthful of barium, lots of screaming, about 5 xrays of the oesophagus and stomach (which surprise, surprise all look normal), 10 minutes later and that was it - 'what about the rest of the intestine?' I asked - 'we were only asked to look at the stomach and oesophagus' Either I am the only sane person dealing with an abundance of incompetant fools or maybe I am the fool.
05-03-2012, 12:16 PM   #25
polly13
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ARRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRG
one mouthful of barium, lots of screaming, about 5 xrays of the oesophagus and stomach (which surprise, surprise all look normal), 10 minutes later and that was it - 'what about the rest of the intestine?' I asked - 'we were only asked to look at the stomach and oesophagus' Either I am the only sane person dealing with an abundance of incompetant fools or maybe I am the fool.
Thats odd - when Lucy had her barium it was to look at the small intestine (the bits they couldnt get to by scope) oesophagus and stomach can be seen by scope and even though it would require a ga it is a lot easier than the barium swallow. If they really wont do the colonoscopy get them to biopsy the mouth ulcers - easy enough procedure and as Lucy had them at the time of her scope they biopsied and felt that because it was active would be easy to biopsy and help get a diagnosis.
Glad you have the chance to change doctors - hope that went ok. If you can at all insist on the tests (I know none of us want to put our children through needless tests) but you little guy sounds like he needs the scopes.

To answer your questions, Lucy's barium swallow was clear but that wasnt really as surprise as her disease is peri-anal and we would have been shocked if it wasnt clear but the GI wanted to do it to be thourough.
Lucy lost some weight initially with all the vomitting but she held her own for the best part of year - she weighed 24 llbs for a full year. She started to put on weight while she was on prednisone and she is now 30llbs and we are so delighted. Good luck
05-03-2012, 02:26 PM   #26
Suzysu
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Thanks Polly - Im so glad Lucy has put on weight now! - you must be very relieved.
I was so shocked whe they said they had finished as I had assumed they would look at all the intestine - to be honest he swallowed such a small amount of barium I not sure it would have shown much up further down anyway.
I tried to get throught to the hospital to change Dr's and everyone said they would phone me back - which they didn't. We are going to see if we can get a private consultation with someone - even just to get them to read the history and blood results and just give us an opinion on things. Once we got home from the hospital Freddy was actually really happy, and ate well!! (no vomiting yet today, just lots of diarrhoea!), but he ate and was happy so that's the most important thing!!
05-03-2012, 02:36 PM   #27
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That must be so frustrating. No idea why they would only look as far as the stomach - that is easily reached by an endoscopy. I would have thought that the only reason you do a barium meal would be to get to the bits inbetween that the colonoscopy and endoscopy can't reach.
Is it a children's hospital you are going to?
05-03-2012, 06:03 PM   #28
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The good days and bad days seem to be a feature for a lot kids. My two were the same...me pulling my hair at the sky falling in and the next thing ya know I'm sitting there thinking if I am making a mountain out of a mole hill!

It's good to hear that you are moving on from that! Yep, still shaking my head as to why you wouldn't just scope both ends at the one time.

Iron supplementation can cause false malaena, which is what you are describing. I would be inclined to stop the iron for a couple of days and see what happens with his motions.

If you aren't already doing so it might be an idea to keep a journal of his symptoms too. It is a good way of tracking things for you and it just might help put the pieces together...

Diary Inclusions

Dusty. xxx
05-04-2012, 01:30 AM   #29
izzi'smom
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The ba swallow was probably because of vomiting; they look at the barium as it seeps into the stomach to check for reflux (it sits at the bottom of your esophagus for a minute, slowly passing through the sphincter into the stomach). Esophageal strictures can also be diagnosed with this test. Did they discuss the results with you?
With his symptoms I would still push for a colon and endoscopy if I were you. Glad he ate well today!!
05-04-2012, 02:56 AM   #30
Suzysu
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Thanks again everyone!
Sascot - It is'nt a childrens hospital but it is a peadiatric gastroenterologist and it was a peadiatric xray facility we went to, they were very nice and friendly.
Dusty - It is a rollercoaster, he was so bright and totally happy yesterday I just thought maybe I should cancel all the other tests and see what happens, thought he can't be that ill if he can be this happy inbetween times if you know what I mean!! also thanks about the false melena - I did stop the iron supp for 6 weeks (as dr told me to then didnt tell me for 6 weeks that he was still iron deficient, then wrote me a letter to tell me to increase the amount of supplement!!), In that time he did still have dark pink or black diarrhoea but it was'nt sticky or tarry and I think it may have just been discoloured for whatever reason. He only occasionally has black or dark red diarrhoea, its not all the time. I have been keeping a diary of food he eats (or doesnt), and all his other symptoms!
Izzy's mom - I know that looking at his oesophagus and stomach will have ruled things out, so thats good, I just feel a bit frustrated that they did'nt look at his whole intestine, and feel worried that he may go through all this, they wont find anything (if they are not looking at the right bits), say he is fine and then he may have to go through it all again at some point if he doesnt 'grow out of it'.
So far I have had no luck in speaking to anyone who can advise me about changing Drs - so frustrating!!
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