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First sign's of crohn's in Children?

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Posted 7/16/2011 6:57 PM (GMT 0)
Hello everyone,

My daughter, who is 11, has been having some symptoms with Crohn's like features. She is now at the point of seeing a hospital doctor and I have a few questions I hope some members here may be able to answer before her appointment this week.

For those who started Crohn's as a child or whose child has Crohn's what were the first signs please?

Also, my daughter has high fevers, roughly every month which last 3-4 days. She can get tummy ache with these fevers, but sometimes very mild. She also gets loose stools when she goes to the loo, but doesn't really get diarrhoea.

Do the symptoms ring any bell with any one?

I know symptoms of Crohn's can vary enormously, but I would also like to know if it definitely doesn't sound like your experience of Crohn's!

I think it is unlikely my daughter does have Crohn's, but I'm keeping an open mind at the moment.

Many thanks, Sx
Posted 7/16/2011 9:36 PM (GMT 0)
It's good that you're concerned for your daughter, but unless you get a difinitive diagnosis, you really can't say. You're right in your assumption that a Crohn's diagnosis is unlikely. 

It could be anything from Gastritis, appendicitis to a food allergy, or even Celiac. One tell tale sign, for the most common type of Crohn's is a mass, lump like feeling on the lower right side. 

They will likely do an ultrasoud, then if they suspect anything after that, will refer you to a Pediatric Gastroenterologist.

Good luck, hopefully nothing to worry about.

Tom.

Posted 7/16/2011 10:32 PM (GMT 0)
In son's case the most prominent symptom was stomach pain. Dr put it down to heartburn(idiot!!) and gave him 6 tubes of gaviscon! Over next few years he became very pale, didn't grow and was severely underweight. As time went on even when he desperately wanted to eat because he was starving he couldn't physically manage to swallow more than a mouthful or two, he also tends to suffer with constipation as opposed to diarrhoea.Eventually Dr carried out blood tests and based on them referred to a Gastroenterologist and the rest is history so to speak.

When he does have flares(stomach pain) he does develop a high fever.

Like Tom has said it could be any number of things and I think that first they will try and rule out things like appendicitis(ds already had this and had them removed) They can do tests for celiac and will prob also run blood tests to see whether they indicate any inflammation present. Based on these results they may wish to investigate further with the likes of a colonoscopy.

Symptoms do vary enormously so hopefully she will not have Crohn's but to be completely honest I didn't think ds had it either(in main because he didn't have diarrhoea)

Keep an open mind :)

Good luck to you both
Posted 7/16/2011 11:46 PM (GMT 0)
I started to show signs at 13 or so. I would come home from school, have a big glass of milk and an apple. By dinner time I was curled up in a ball on the couch in pain. Since my mother had Crohn's I was sure that was what I had too. Her doctor assured me I was just lactose intolerant, but he didn't run any tests. I stopped drinking milk and pretty much stopped eating fruits and veggies for a while and did pretty well for the next 10 years. But, I was always small for my size. My pediatrician was always threatening my mother with growth hormones if I didn't gain a specific amount of weight each year. I can remember being about 35 pounds for several years in a row. I still am only 5 feet tall. So did I have some absorption issues all of my life? who knows? As the others said, Crohn's is the zebra in the room, you are most likely looking at something more common and easier to treat. But as a mother myself, I would not rest until you know what is going on.
Posted 7/17/2011 12:03 AM (GMT 0)
I think my first sign came when I was about 11 too. I got a big skin tab on my rectum. Didn't really think anthing of it and it was nothing I was about to talk to anyone about. I developed a mass on my lower right side, but had no pain or any idication that the mass was a problem per se so I didn't even notice it was there until I was about 17. I was VERY active and didn't really let myself have time to feel what was going on in my body anyway. My mother claims that once every three months or so, I would come home from school not feeling well and then lay down for a nap, sleep till the next day and be fine again. When I was 17 I got anemic and had to come to sleep again. Then my elbow swelled up to the point I couldn't move it, I got a couple high fevers 104.5ish, but when my parents took me to the ER they blew it off as the flu. Next thing I knew I was in the hospital diagnosed with CD. No D, no pain really, no indigestion or anything... just a big slam to my system that put me in and out of the hospital for about 6 months until they decided to do surgery. I still don't have much a problem with D. It's a little bit more since the surgery, but nothing unbearable. Unfortunately, I don't think there's anyway to know, until they do enough tests to find out for sure.

Best of luck to you and your daughter. Hopefully, it's something easy... if not... there's a whole swarm of people here to support both of you. :)

Laura
Posted 7/17/2011 3:05 AM (GMT 0)
Your Daughter's symptoms sound very similar, almost identical in fact, to what a friend of mine's 15yr old Daughter has been going through for many many years. She has FMF also known as Familial Mediterranean Fever. This can be diagnosed with blood tests. Also, bear in mind that not every child has failure to thrive and is small for their age. I have never been small, I am quite tall and have never been underweight (I have since having kids been overweight though), and I first started getting symptoms in my early teens. My 11 yr old Daughter has been having problems for about 3 yrs and they have no idea what it is, but I get told it can't be crohn's cause she's too tall! Ridiculous. I would start with blood tests and an ultrasound and go from there.

I wish her the best of luck.
Posted 7/17/2011 5:23 AM (GMT 0)
I was diagnosed at nine years old but before that I had all the symptoms. I went to er several times could not eat, lost a lot weight, threw up all the time, fever/chills, killer stomach pain, going to the bathroom all the time, and no energy. After about eight months of doctors saying I had the flu, a bacteria infection, sprue, and cancer, a doctor in Pittsburgh, Pa told me, I had Crohn's. But what makes me mad to this day four other doctors ordered the same test and misdiagnosed. They put my parents thru hell and back. Also, my word of advice find the best Ped G.I. you can find. Good Luck, Mr D.
Posted 7/17/2011 7:53 AM (GMT 0)
Wow! Thank you to everyone who replied. I posted on a few Crohn's forums, but this one is definitely the most active!

I am thinking now that we may have to give more thought to Crohn's; perhaps think about some tests to rule it out.

crashbabe2 your joint pain with the fever rang bells, last time dd had a fever, she ended up limping because her hip was so painful. And the fact that you were active and had no weight loss - this is my dd exactly - between fevers and episodes of stomach ache she is fine!

Zanne also the milk intolerance is familiar too; dd can have a small amount of milk, but if she's had a lot of milk products in a day she ends up with a flare up of stomach ache.

virtualterror it is really interesting that you mention FMF, even from what little I've said, because this is what I am thinking it most likely is, or at least a periodic fever syndrome of some sort - they're all very similar. Quite a few people with FMF have been diagnosed with crohn's in the past - the symptoms do seem to be incredibly similar.

During fevers my dd gets joint pains, especially knees and hips and muscle pain in her legs. Her mid fever blood test show raised CRP, an inflamitory marker, which could equally apply to Crohn's or FMF! ESR and WBC were normal. She also shows raised blood and protein in her urine during fevers and sometime with episodes of stomach ache. It's all very puzzling.... and frustrating.

Thank you again for all your replies and good wishes. What the texts books say and what people really experience can be so different! I am feeling more confident about having a discussion with her hospital doctor this week.

Sorcha
Posted 7/17/2011 10:20 PM (GMT 0)
I wasn't diagnosed until I was 19, but I probably had symptoms as early as 12 or 13. I remember having to go to the bathroom almost as soon as I would eat. I didn't start having stomach pains though until I was about 16-17.
Between the ages of 12-16 I had been diagnosed with everything from acid relux, to polycystic ovaries to dysplasia to stress to hypochondria :\ I hope you find some answers, and hopefully it's not Crohns!
Posted 7/17/2011 11:22 PM (GMT 0)
I was diagnosed at 16. I thought my symptoms were just a bug i'd picked up, lots of D and anal irritation, but my parents noticed I dropped about 40 lbs in ~2 months, so they took me to our doctor.

This early in the diagnosis process, I'd say it's unlikely your daughter has Crohn's. It's not all that common of a disease, and there are hundreds of other ailments that present similar symptoms, many of them far more common. That being said, you should definitely have her tested for it anyway. If it's a no, you've ruled something out, and if it's yes, you can put a name to her tormentor and start treatment. Best bet is to keep doing as you've been doing: Work with your doctor, do what research you can, present ideas, and just generally be a mom/dad.
Posted 7/19/2011 6:19 PM (GMT 0)
Hi, My son first started to have symptoms at just under a year old. First off he would curl in a ball and scream. For hours. Prolific D. He lost weight and got very lethargic. After about 4 months and changing his diet to one that was very bland, he slowly picked up. After a similar episode at the age of four, he was hospitalised due to a "particularly agressive virus." By the time he was six, he was being sent home from school every day. he had spiking temperatures, was vomiting, lost so much weight i could count his ribs through his spine. The runs with blood and mucous and almost constant tummy pain. Eventually a GP decided that he had appendicitis and he was taken into our local hospital. 24 hours later he was transfered by ambulance to a specialist in London. Some Virus
Posted 7/21/2011 11:29 PM (GMT 0)
My first symptom when I was 8 was my CD arthritis (I had constipation issues following the chicken pox too which was about 3 yrs prior to joint issues and hosp for Dx). The joints were about 1 month before the gut started, not too long after (about 7 weeks I was hospitalized...then it took a few weeks to Dx)
Posted 7/22/2011 5:37 AM (GMT 0)
My daughter was diagnosed at 10 but looking back all the symptoms she had prior, were an indication that something was up. When she was 4, she had severe joint pain. They originally thought she had Lupus due to the joint pain being so severe she could not walk and a fever for 10 straight days. She always complained about stomach pain and joint pain. She went to the bathroom alot and would run fevers frequently and get sores in her mouth and wasn't gaining weight. She started to have behaviour problems. Then depression when she was 9. I had been taking her to the dr's but they couldn't find anything definitively wrong with her. So when she was 9 she ended up in a psychiatric ward for a suicide attempt. The pyschiatrist diagnosed all her symptoms as pyschosamtic. Anyways, her behaviours got so bad, I sent her to my mom's to live. My daughter actually wanted to go. While she was there she ended up severely ill. She was passing blood in her stools and ended up with blood poisoning. She was 10 and weighed 50lbs. It was then she was diagnosed.

But like you said, everyone's symptoms can be different and you never truly know until the dr's do testing.
All the best to you and your daughter!
Posted 9/3/2012 9:25 AM (GMT 0)
Just to say thank you to everyone on this tread for your replies and to let you know that I finally discovered what was wrong with my daughter. She is now under a rheumatologist who identified that she has a 'Periodic Fever Syndrome' and has put her on a medication that completely controls her fevers, the tummy aches, the aching muscles and all the other weird symptoms she was getting. She is now living a normal childhood again :D

Thank you for your support when I was going though a really tough patch and wishing you and your children all the best living with this challenging condition, Kind regards Sarah
Posted 9/3/2012 1:14 PM (GMT 0)
Although crohn's patients usually get the arthritis after the gut symptoms, some of us get the arthristis first. When I was a teenager I had frequent bouts of tonsillitis and swelling of the knees. The doctor would drain my knees and the pain would be gone for awhile. Then I developed hip pain. At 19 I started having stomach problems - bloody bm's, fevers, etc. Took a year for the diagnosis of chrohn's, and by then I needed a resection. I'm glad the rheumatologist has been able to help your daughter. What meds is she taking?
Posted 9/3/2012 5:53 PM (GMT 0)
My son was diagnosed with CD at 18..My dad was also UC..He was underweight & small and is 5'7 and weighs around 140 pounds at 23..He also has rotated intestines that function just fine..His appendix is on the left side of his body ect..He had severe colic as a baby, he always had a sensitive digestive system and is lactose intolerant..He has had severe joint pain, and has suffered with a severe case of skin rashes, always complains of a stomach ache, has severe bowel spasms, diarrhea, and is given mostly asacol and anti-spasmotic drugs, in a usual flare he has inflammation patches up and down his intestines..He has a poor diet right now coming out of college..He told me at his last visit he had not had a solid bowel movement in a month and his rash is flaring up..It is usually on the trunk of his body..I advised him to try a gluten free diet which did not meet with any enthusiasm..He complains of not feeling well all the time..
Posted 9/3/2012 6:09 PM (GMT 0)
As for my own symptoms, my father was proactive in my teens since he was a UC suffer himself..I had severe stomach pain in elementary school..I had diarrhea, constipation, and bloating as a teenager and at 16 was diagnosed with severe ibs..I had my four children between the ages of 19-25..I remember having boats with constipation, diarrhea, and kidney stones..I remember the diarrhea being so bad that I would go down and sign for a drug called parapectalin to stop the diarrhea..I was not in any kind of pain..and developed an allergy to nitrates & msg..At 32, I went in for a severe case of internal hemmies, had developed severe headaches, and had constant utis w/ stones..I was sent to a GI after an exam from the surgeon, the GI could only get 1/4 way into the intestines and it just kept rolling--I went into a full blown active flare at 33-34 which required surgery and was very sick from 34-38(my dark years)..from my younger years I just remember being constipated, had severe diarrhea, and being nauseated frequently..
Posted 9/3/2012 7:42 PM (GMT 0)
Thank you oldchronie and cindyw,

yes, there is a tremendous amount of overlap between periodic fever syndromes and IBS, mouth ulcers, tummy pain, loose bowels, fevers, rashes, joint pain - they are both inflammatory conditions, so that might be why.

My daughter is taking a med called colchicine, which is normally used for gout, but is also effective for some types of periodic fever syndrome too. Fortunately she has had a good response and her symptoms have cleared up.

In the mean time, coincidently, my mum has been diagnosed with UC, but she is convinced this is due to a sugar intolerance and is trying a sugar free diet to see if it helps.

thanks again, sarah xxx
Posted 4/16/2017 1:39 AM (GMT 0)
Hi, I was diagnosed with Crohn's disease at 14 and I would highly consider Crohn's disease. My symptoms only consisted of immense cramping pain and fevers and seven months later since the symptoms started, I went to the hospital twice. At the second hospital visit, the cramping became so bad that it lead to constant throwing up for 6 days and I ended up having to have a surgery. Since your daughter also has other symptoms as well that are common with crohns, I would consider it. The only symptoms I for seven months was cramping and fevers so your daughter's symptoms could be enough to be tied with crohns.
Posted 4/16/2017 5:48 PM (GMT 0)
Hi Hashtagredhead,

I was surprised to get a notification of your post - it's many years since I posted now, and I had forgotten I had posted on this forum! In the end, it turned out my daughter has periodic fever syndrome, which is an auto-inflammatory disease, as I believed Crohn's is also now considered. This is an hereditary disease, and one of her brothers has also developed it. Fortunately, it is well controlled by a medication called colchicine.

The symptoms of both diseases can certainly appear very similar, which is not surprising since they are both auto-inflammatory. However, there is no long term damage to the bowel in periodic fever syndrome, although there is a slight risk of kidney disease if the disease is not well controlled.

I am sorry you had such a tough time as a teen - it's seems so unfair having to struggle with these diseases so young. I have a few of acquaintances with Crohn's - it can be tough disease to deal with. I just hope the growing interest in auto-inflammatory disease helps to bring about some new effective therapies. All the best. x
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