earliest diagnosis of crohns ever?

my 3 year old was diagnosed with crohn's disease when he was only 7 months old. i have never met anyone else with an earlier diagnosis. one of my main concerns is the effect of longterm medication... many of the drugs used for treatment arent even approved for the under 6's...

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Education NEW
by: Anonymous

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the mother of the child diagnosed at age 7 months NEW
by: lahlily

Hi, so last time I wrote my son was 3 and a half years old. He is now 5 and currently on humira injections every other weekfor a year and half now. He has had reoccurring c-diff virus off and on all this year which he is currently finishing a longterm (3 months) treatment of antibiotic for, slowly decreasing the dosage to the point where he only takes one dose this week and next and then he's finished with it. Just hoping it does the trick and his body can stay c-diff free. He also caught adenovirus in August and couldn't shake it off, his Crohn's flared and he ended up in hospital with dangerously low potassium (due to too many stools).
They did a huge test.on his blood for a few months over a year ago to see what kind of Crohn's they are dealing with and if it is a primary or secondary disease, etc. Turns out it is definitely Crohn's, not ulcerative colitis, it is a "normal" Crohn's but it is severe disease this they have to think out of the box for his treatment. So since he flared with the recent adenovirus they decided to put him on a small round of steroids... 6 weeks max if all goes well. So far he is responding well... Just my usual worries going on as we are approaching cold and flu season and we all know what that means: those with lowered immune systems catch everything which exacerbates the disease. A vicious cycle.

Earliest Diagnosis of Crohn's ever NEW
by: Annette Young

Hello there,

This is such a sensitive issue and my heart goes out to the mother of the three-year-old. It is bad enough to have Crohn's disease and to experience all of the pain and trauma but must be so hard to watch a child suffer, especially a very young child.

I can understand the concerns of any child having to take long-term medication and to be honest; this is something that we are all concerned with when taking medication, irrespective of the actual health condition as all drugs have side effects.

It is quite rare for a child to be diagnosed as young as your child and I hope you have a very sensitive doctor or specialist who is supporting you at this time. Crohn's is a condition that is difficult to diagnose fully but at least you do know what you're dealing with now.

I think it is an absurd suggestion to suggest stopping your child from taking the prescribed medication because this could make your child much worse and I say this from an informed natural health background. Stopping the medication can lead to very severe consequences although I do not want to frighten you here. There are many genuinely skilled doctors about, I am sure they are monitoring the situation carefully.

I am quite sure that your child will receive the best care possible but you also need to look after yourself and learn everything that you can do about this disease as apart from helping you, it will enable you to educate your child to hopefully minimise the effects of the disease going forward.

It is frustrating for all that there is no cure for crohn’s disease yet but fingers crossed as your child grows up, new medications and potential cures may be discovered.

Best of luck.

If anyone else has any young children who have been diagnosed, please do get in touch.

Annette

Wondering about symptoms NEW
by: Nova Scotia

Hi, I was wondering what symptoms your child exibited as an infant? My son has struggled with bowel problems since birth and recently (now 6yrs old) had an episode that resulted in a 9 day stay at the hospital as he had a blockage:( I have repeatly questioned doctors re:Chron's Disease as his father has Chron's as do other family members. Part of the problem we seem to run into is that our son looks great and is triving otherwise, but so is my husband and his Chron's is quite severe. Any information you give me would be great as I am trying to push the doctors to do testing before he has another episode.

Sorry!!! NEW
by: Terri

I guess you're right about not having the baby on meds, but they scare me and I don't want to take them. But, I may end up having to as well. I pray your baby goes in remission and a miracle happens and it never returns. God bless you!

to anonymous... NEW
by: lahlily

dont worry anonymous... i am not an idiot. i wouldn't listen to some strangers advice to take my child off of meds.
i am the one who started this conversation and i was only looking for someone else who has a baby diagnosed about the same age as mine... so we could discuss the meds, the doctors, the research, etc.
i myself have crohn's disease, diagnosed with emergency exploratory surgery when i was 18. had a tumor the size of a grapefruit removed.
we take our now 3 and half year old to a top notch university medical hospital where he is under the care of the head of the department.
in 3 years i have not met one person online or in person with a baby who had a crohn's diagnosis. not even the docs could believe it. i was expressing my worry and concern when he was only 2 months old and since i have crohns myself i really pushed the doctors. with much reservation, they listened to me, ran blood and stool tests, then based upon those results, followed with a colonoscopy. the doctor said it was "full disease" (and this was at age 6months) ... we waited 1 month to receive the official word based on the biopsies/lab results.

To: Terry NEW
by: Anonymous

I'm sorry but telling someone not to take medications without the approval of their doctor is just plain irresponsible! You need to weigh the risks with the benefits. In the case of a young child not taking the medications could result in serious complications. Please do not give advice if you are not going to give an educated response!

born with NEW
by: jay

hi im 32 now and was born with crohnes but only diagnosed at 13 when my arthritis flared up very badly, i agree that it is down to the doctors and what they know about it, i was born in the 70s not much was known about crohnes then, i have an illeostomy now which i had at the age of 20 my crohnes was very bad tho xxx

earliest diagnosis of crohns ever? NEW
by: Lydia D.

Please note that a diagnosis has more to do with the skill of the doctors than how long an individual has had Crohn's disease (IBD - inflammatory bowel disease). There are many Crohn's patients who wait decades for the doctors to work out what is wrong with them and have to make do with a diagnosis of IBS (irritable bowel syndrome) or psychosomatic disease.

Your baby was born with Crohn's. It is a genetically determined, inheritable disease with multiple "Crohn's susceptibility" gene loci involved (perhaps some 300 - over 70 identified to date), it skips generations and has very complex genetics with overlapping gene loci with other (auto)immune diseases. http://www.nature.com/ng/journal/v42/n12/full/ng.717.html

There are several different types of Crohn's disease.

People can carry the Crohn's genes and not show any signs of the disease or flare up later in life. There is a paper on a Japanese man who was 92 on first diagnosis. http://www.ncbi.nlm.nih.gov/pubmed/8808439

Please let yourself be guided by the doctors. They will try and do their best for your baby. There is no doubt that it is a daunting diagnosis regardless of age. Children are confronted with additional potential problems, i.e., stunted growth, late puberty, etc.

If you do not administer the medication prescribed by your doctor, the Crohn's may get completely out of control. This can lead to perforation of the bowel, peritonitis, sepsis and, perhaps, even death.

The medication is administerd on medication weight/body weight and there are plenty of cases of paediatric Crohn's for the doctors to know how much medication to administer.

There is no cure for the disease and herbal remedies should only be used under medical supervision and as concomitant therapy to standard therapy.

Do a search on "pediatric Crohn's disease" and "pediatric Crohn's/inflammatory bowel disease clinical guidelines" to find the clinical guidelines relevant in your country. The guidelines are written for the medical community. They are not legally binding. The national clinical guideline would give you enough information to facilitate future therapy discussions and negotiations with the doctors.

USA Clinical Guideline - Evidence-based care guideline for management of pediatric moderate/severe inflammatory bowel disease (IBD).
http://www.guideline.gov/content.aspx?id=10776

Pediatric Crohn Disease
http://emedicine.medscape.com/article/928288-overview

Here is another mother with a Crohn's'd baby:
http://www.mdjunction.com/forums/crohn-disease-discussions/introductions-personal-stories/885189-my-baby-was-diagnosed-with-crohns-disease

Go the natural route+ NEW
by: Terri

I would not put a child that young on a dangerous medication. Try giving the child probiotics and aloe vera juice made from the inner gel of the aloe leaf, make sure it's organic and purified. Walmart carries it in a large jug in their pharmacy section,Don't use the berry flavored,it's made from whole leaf and is no good for you. I mix mine with another juice and put stevia in to sweeten it. I have been doing great for months on this. Try it!!!! Terri

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