Anyone with a toddler with Crohns

[robertsmorcom]

Hi I have a 2 1/2 year old son who has a long history of complaints and I'm trying to research Crohns disease as a possibility...his Paediatrician is reluctant to do any tests because of his age...he is in so much pain sometimes and has days of constant diarhoea...looking for anyone who maybe able to help

 

[Guest]

hi and welcome to the forum.

it must be so awful to watch such a little one suffering, and not know what it is or how to help.. my heart goes out to you all.

have you noticed any other symptoms or issues which make you think it may be Crohn's?

we have a Parents of Kids with IBD sub-forum here.. you may find it helpful to have a look through the posts in there - http://www.crohnsforum.com/forumdisplay.php?f=49

i really hope you find the answer to your son's symptoms, and that it isn't too long before he's diagnosed and made more comfortable.

 

[robertsmorcom]

thank you...a long list really, he's had diarhoea non stop which which we have done dairy free diet 3 times now and no difference, he's been admitted to hospital 20 plus times since around 6mths of age with severe diarhoea and abdo pains, he has only what I can describe as little orange capsules which are filled with fluid in his stools (and I mean 50 plus of them) on a couple of occassions, he's had couple of severe vomitting episodes.. he's stools absoloutly stink similar to acidic smell and gives him severe nappy rash..he's really picky with what food he will eat and if he eats something that doesnt agree he ends up on the sofa for hours in pain...he can go a couple of weeks with just diarhoea then he'll have weeks of severe pain and cramps..
Will have a look at the link in a mo and see how I get on, oh and he was on meds from 9mths for silent reflux which helped a little but no improvement

 

[Lydia]

I would investigate other causes too. I would try an elimination diet. He may have a food sensitivity/allergy. Probiotics can also be helpful. (If you havent already, I dont know what you have tried.) My DD has the opposite problem. We deal with chronic constipation. It gets better for a few weeks and then it always comes back. There are 8 major allergens that you need to exclude on an elimination diet and then you slowly bring back 1 food at a time. The allergens are dairy, egg, wheat/gluten, soy, nuts/peanuts, seafood, and corn.

I hope you can find out what it is. Poor guy.

I would also have him tested for celiacs disease.

 

[robertsmorcom]

Hi Lydia
He is currently under a dietician, dairy has been ruled out along with Caeliac and she's not convinced it's food related, she's only doing checks again (have been seeing her since my LO was 4mths) because after his last dash to A&E a doctor (who's never seen my LO b4!) discharged him and told us to do the allergy side AGAIN.
I feel deep down as a mum that something more is going on but they are so reluctant to test him because of age...me and the hubby are thinking of going private and paying for a diagnosis.

 

[Guest]

poor little boy

the lactose intolerance theory would be my first thing to investigate, but as you've done dairy free with no change, that probably rules that out...

possibly gall bladder? it certainly sounds like a gastric acid issue, especially as he had upper acid problems when a baby..

you say he's under a paediatrician... is he also under a GI? if not, i'd absolutely recommend you get him seen by one asap.

 

[Guest]

sorry for double posting.. i just found this on the net...

If you can't attribute your orange stool with anything you ingested, then it may be caused by a lack of exposure to bile salt. Stool starts out as green, and then turns to a yellow-orange in color before being exposed to bile and bacteria which turns the stool brown.

Low exposure to bile salt can be caused by a couple different factors. First, your transit time is so fast that your stool is being pushed through your digestive system too quickly. This quick movement of stool reduces the exposure to bile salt resulting in orange stool.

Second, your liver may not be producing enough bile salt or your bile glands may be obstructed. If it's the latter, you may want to consider liver cleansing or liver support supplementation.

http://www.puristat.com/[wiki2="Constipation"]constipation[/wiki2]/bowelcolor.aspx


eta: also...

One reason that stool may not be absorbing enough bile is that the stool is moving through the body too quickly. This could be caused by a variety of reasons, including diarrhea, irritable bowel syndrome, or short bowel syndrome. A second cause is a lack of bile, which could mean that the body is not making enough bile, or that the bile ducts are blocked. A blockage in the bile ducts can be caused by gallstones, inflammation, cysts or tumors.

http://ibdcrohns.about.com/od/otherdigestivediseases/a/orangestool.htm

 

[robertsmorcom]

Forgot to mention he was prescribed baby milk at four months as the dietician thought Lactose but that was also ruled out.
We have an appointment in March with a Gastro Specialist after demanding with his regular Paediatrician! I really need to find out wots going on, he's 2 and half and spends most of his days laying on the sofa watching Television when he should be running around driving me up the wall!
When you say Gall Bladder wot sort of symptoms/conditions come with it?

 

[robertsmorcom]

oh and I just seen second post will have a look now, thank you

 

[Brian'sMom]

Maybe change pediatricians. There are difinitive tests to rule out Celiac and lactose intolerance. Have they done any blood tests? Not testing him because he's young seems like a silly excuse to me. Catching things early is always a good thing. My husband and I spent some years in denial thinking, no way could a 5yr old have crohns. We were dumb back then. Thankfully he didn't have any damage due to our denial. Couldn't they start simple and non invasive so he's not put thru lots of scary stuff?

 

[Guest]

i really don't know much about gall bladder problems, except that the pain can be excrutiating... it does seem a good direction to look into though, as there are many references to bile production connected to orange diarrhea..

i'm glad you've got a GI appointment - it's a shame it's not sooner

 

[robertsmorcom]

Hi Briansmom, I asked in November 2010 after 3 A&E admissions to have a second opinion and its apparantly in process, he did have blood tests done then which ruled out Celiac, he had very low sugar levels at the last hospital admission (also severe diarhoea and vomitting this was his first vomitting episode) but blood tests also ruled out diabetes & tummy bug...what would you say are non invasive tests as I am trying to get a list together so that I am prepared for our next visit to Paed

 

[Guest]

i would guess the first level of non-invasive tests would be blood tests (they can use magic numbing cream), stool sample & urine tests, and ultrasound scans... but i think that as soon as you see the GI, they'll know exactly what diagnostic procedures are needed, so you may not need to get the list together yourself..

with constant diarrhea like your little boy has had, i wouldn't be surprised that his blood sugar was low.. we lose all kinds of things in diarrhea, glucose, sodium, a whole range of electrolytes & minerals...

 

[Brian'sMom]

I will start by saying, I'm new to this whole Crohn's thing and there are a lot of others on this forum that are a lot more experienced. That being said, our GI ordered tests like a small bowel follow thru and an MRE (that's an MRI but MRE uses radiowaves instead of radiation). Those tests involve drinking stuff and then having the test done. My child just had to lay still, no pain. Also early on did exray on his lower abdomen section. My son also had a colonoscopy at age 5. The IV was hard for him, but then the rest he slept thru. In 'the 'parents of kids with IBD' section there are a lot of smart parents with good advise.

 

[robertsmorcom]

thank you so much I will most certainly venture over to the parents with kids of IBD section and see what I come up with.

 

[Brian'sMom]

They've started using a "Buzzy Bee" for when my son has an iv. It vibrates and they hold it above where the stick is going to be. The buzzy feeling tricks the brain and he never feels the stick.

 

[robertsmorcom]

I am so hoping the Gastro specialist will give us some answers/tests his diarohea is so severe at the moment hes got horrendous nappy rash
Question for Briansmom...when did your LO's symptoms start and what sort of symptoms did he have..I mean did you KNOW from young baby that something wasn't quite right?

 

[amirah]

Hi robertsmorcon

welcome to the forum, sorry to hear about your little boy having a differcult time,
My daughter leye is now 21 months and has been going though the sam symptoms as
your son, she she also has many or other medical problems and has now been diagnoised
with crohns. if you would like to talk or ask anything feel free.

 

[robertsmorcom]

Hi amirah I was just looking thru 'Parents of Kids with IBD' on here on your posts have really jumped out at me everytime and I was trying to build up the courage to send you a message!....I'm just so new to the site I'm not quite sure where to go and what to do at the mo!
You mentioned my son Spencer's symptoms are the same as Leye's and was wondering which that i've mentioned stand out the most to you...Spencers had numerous stool tests done and all come back normal...normal for no infection??

 

[Brian'sMom]

Robertsmorcom,
When my son was young, if he ever got sick, kinda affected his poo, but was never a stand out then. When he was 5 he had bronchitis and the antibiotic gave him diarrhea. After a month or two...still diarrhea. Pediatrician started doing stool tests for C diff...all negative. Diarrhea continued and after trying everything like acidophillus, probiotics, toast, bananas...etc we were at 5 months of this, pediatrician sent us to a GI. Right off they thought he looked small and were concerned about celiac or crohns. They did labs and then colonoscopy and said 'maybe' crohns. As I said earlier, I was in a bit of denial. I thought the antibiotic had done the damage. He didn't have many ulcers, no lack in energy, no abdominal pain, etc. I thought the drugs were making him worse, so I started him on gluten free diet and weaned him off the sulfasalazine. He went into remission.(They are puzzled by this but say maybe the drugs put him in remission and timing was coincidental) 3 years later it reared its ugly head again after he battled a virus and the frequent diarrhea came back, this time he was cramping. (He didn't cramp or have diarrhea during those 3 years, but we were noticing that the other 10 yr old boys were having growth spurts and he was not).

 

[abial'smamma]

Hi my name is anna i am 21 and i have a 17month old little girl her father has chrons he was diagnosed at age 13, now my little girl is showing sighns she has had diarea for 2 weeks and the docters sathat the linning of her stmic is starting to deteriate, she keeps getting bad dipper rash that have blisters that sume times bleed the docters toled me that it is normal and its called toddler diarea but i have talked to many parents and none of them have ever heard of it. i am verry worried she is are mirrical child i am not supposed to have children then i barly had her im really conserned and i need ansers.

 

[Farmwife]

Hi and welcome.
Sorry to hear about your little one. So sad to see our babies suffer so. I'm glad you found your way here. My precious little angle is three and undiagnosed as of now. We'll see her GI in June for the first time. You might want to think about popping over to Parent of kids with IBS forum. Post your story there. Lots of GREAT parents with kids just like yours. They have TONS of experience with crohn's and a lot better on giving advice then me. They've been a life line for me.
Welcome aboard! Hang in their your not a lone!

:soledance:Farmwife