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10/01/2009 12:15 PM

My baby was diagnosed with Crohn's disease

lahlily
Posts: 10
New Member

Have joined this forum because I have been searching for many months trying to find other's who are going through the same things we are experiencing right now with the diagnosis of our little baby with crohn's disease. J was born June of 2008 and within 2 months he was having blood specks in his poo. Had it checked out and of course it initiated the first line of defense the docs usually start: "must be food allergies" and since he was breastfed this meant my stopping all milk protein and all soy protein (and all the foods which have any of either... which is LOADS). Long story short, J continued to have blood in poo even with my food intake modifications, around 4 or 5 months of age his weight started to go down a bit (not loads) and after a special poo test to check inflammation of bowels came back positive, doctors felt need to do colonoscopy in Jan. 2009. He was immediately diagnosed w/IBD and it was suspected lab results would show it was Crohn's and indeed in Feb. 2009, our 7 and half month old baby was diagnosed with crohn's disease.

The little guy started with sulfasalazine and although he seemed to respond well to med he eventually got full body rash which was typical of sulfur allergy and they stopped med immediately and we made switch to pentasa (very difficult to give to a baby who only breastfed, refused bottles of anything, refused cereal, porridge, yogurt, etc.) but to this day we still treat with pentasa and he takes it like a pro... loads of little beads, straight in mouth, then drinks water.

Yes, he drinks now... and eats. But this hasnt been easy. In April he was hospitalized for 9 days in order to do a semi-weaning from the breast (I couldnt keep up with him... he was feeding 12 times per day and losing weight at 10 months old!) He was fed a milk based formula via nose tube into stomach and I only breastfed 3 times, then 2 times per day (for comfort... I continued to breastfeed 2 times per day for another month, then 1 time per day until we finally stopped in July 09, by the way.) The idea of the feeding tube was to plump him up in order to stimulate appetite and indeed this worked and the last couple of days a dietician would come by room and work with J on getting him interested in eating real food. THE HOSPITAL STAY WORKED! and J was becoming "a regular" eater (sort of). But after a spring with 2 colds AND the chicken pox (he has a 5 year old brother who passes everything to him!) we felt he just wasnt "well enough". Appetite not "great" so weight gain was nominal, stools still loose, 4-6 stools per day, some stools still had blood and mucous. Docs decided to put J on a round of prednisone for 6 weeks. Prednisone was great... after the initial craziness of no sleep on the highest dose he started to seem more "normal" with no blood in stools, about 2 stools per day, and a HUGE appetite.

But here we are 2 months off of prednisone and J has anywhere from 2-4 loose stools per day, his appetite comes and goes (like any other 15month old I suppose) but every-now-and-then he still has blood in poo and his iron is low and according to doc his sedamentation rate (?) is not good. Albumin levels are good however. He is gaining weight albeit very slowly and he is just under the 50% curve for weight... so I guess that is good considering his problem.

Doctors wanted to put him on an immunosuppressive drug (starts with "a"Wink but we said no to doing so right now until we try another (maybe milder) form of treatment. So now J is on day 9 of treatment with the antibiotic Flagyl (spelling?). He gets a little nauseus from it we believe and so I fear he will prob. loose some weight. The goal is to have formed poo. We have seen some more thicker, not loose stools but not formed yet. Problem is, as soon as he gets a little runny nose then his stools are runny. It is like a vicious cycle, they start to get better, then catch a little cold which affects them more because they have an immune suppressed disease and then here come's the loose stools because the cold seems to trigger the bowels to react, and then the blood and the lack of appetite, so on, so on.

It is a constant worry and I just wonder what his future holds.

What is interesting is that J never presented with pain from what we could see. He is happiest little guy in world and always has been. The docs acted like I was crazy in the beginning since all he presented with was blood in stools and he was always smiling at them (loooking happy and healthy!) It is important to know that I HAVE CROHN'S DISEASE MYSELF and was diagnosed when I was 18 with an exploratory emergency surgery which involved an intestinal resection. I was on meds for maybe 10 years and now I take nothing for my disease and with complication free for 20 years. I am very, very fortunate I know. But I credit J's quick diagnosis due to fact that I pushed the doc's to investigate J's situation more than maybe someone else would have.

I have not read of anyone else having a 7month old diagnosed but I would appreciate any and all advice from other's with little babies and toddler's who have been diagnosed. What med's are out there for the little one's? What treatment's have been a success? Some foods working better than other's? Nutrition changes helping make the disease better? What med's were not good and why?

Please help us if you can with answering any of the above questions.

Thank you so much,

lahlily

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10/01/2009 01:06 PM
lively5
lively5  
Posts: 20
New Member

I am so sorry for you and your son having this and my thoughts are with your whole family. I have a 3 year old with crohns and a 5 and 6 year old, so I know it affects all of you. My daughters next appointment isn't until Oct, 26th. They said they will put her on 3 meds then and go over all the information then. We are new to this disease and she has only been on zantac, prednisone and bacrium so I feel I cannot help with any of your questions, but you have my support and my prayers. You can read my post if you would like to know more about my daughter and us finding out about crohns. I wish your family the best.

10/02/2009 03:10 AM
lahlily
Posts: 10
New Member

Hi lively5,

thanks for your response... your mail was the reason i logged on to this site (when i googled about other's having babies with crohn's, your letter popped up on this site).

it is tough not knowing if we are making the right decisions (which meds to put him on/keep him off) esp. when he cant even say 1 word yet.

a little about me/us... i am from north carolina but met a swedish guy in mid-90's and now we are married and live in sweden. we go to astrid lindren children's hospital which is supposed to be fantastic and the head of the dept. is J's doctor. but i know that doc says they get a baby about every other year diagnosed with crohn's: so not that many babies out there w/it you know. therefore i worry when they put J on med's since it obviously hasnt been tested on the little one's ... at least not very much.

we have a 5 year old as well and he has just been diagnosed with mild asthma interestingly enough. also, they are going to do a colonoscopy on him as well since he always has problems which are similar to how i was as a child (like i said, i have crohn's but wasnt diagnosed till i was 18). he has more issue's with constipation and stomach pains. his poo test came back with high inflammation results just like little brother's.

i am going to ask J's doctor if it is true about what you said your child's doc said: about the little one's getting crohn's so early that they might build immunity to it. that would be fantastic!

i am assuming zantac for your little girl is for the ulcers? what is the bacrium for? what does it do?

i read your other posts now and we are always saying same thing, "what did his poo look like?" "was there blood in it?" ... J just started preschool recently (great preschool system in sweden by the way) and the teacher's keep a poop-log hanging on wall in changing room for us with J's daily poo info Smile how many times? was it loose? did it have blood?

i think about the little guy and i can get so sad for him that this will be his life. i mean, he is so use to the way things are, he doesnt know any other way. i guess that is a positive thing as well.

thank you so much again for writing to me... let's keep in touch and give updates... i believe it can really help us (me and you!)


10/02/2009 06:23 AM
lively5
lively5  
Posts: 20
New Member

Wow, we do have alot in common. My 5 year old also has asthma. It was pretty bad the first couple of years but is under control. His doctors say he may grow out of it too. I do not have illness that I know of, but my mom has fibromyalgia, my dad has asthma and fibro and lupus and crohns affect my aunt and grandma on my dads side. The dr. was shocked at how many auto immune diseases our family has. Me and my 6 year old daughter has exzema which they say are autoimmune too. I had never thought about any of these things before. They had Ash on bactrium because they suspected she had an infection on top of everything else. It is an antibiotic. After her last hospital stay and having waterery stools for 4 weeks, we found ourselves rejoicing over formed poo. It's funny how these things excite us! Great idea for the school to have a chart. She will start next fall and I will have to mention this to her school. I used to live NC when my husband was in the Marine corp. Now we are back home in the mountains. I have been married for almost 10 years and am a stay at home mom. Thats about it. I have one more question before I go. Have you noticed if J runs a fever either right before or during his flare ups? It seems as though Ash does. She just got up so I better go. She has been great since out of hospital until last night. She has been up all night off and on crying of belly pain and her stool is real mucousy. But she also has a fever and and a little bit of runny nose so I don't know whats going on. Do you know if they can take any over the counter meds? I better go. It great "typing" you

10/05/2009 11:29 AM
Pam09
 
Posts: 52
Member

I can't even imagine what these little kids go through, it's so sad when children are sick, I have no children, but I do have crohn's and I wonder if you all have tried any homeopathic remedies, like acupuncture and massage(I've tried these and they seemed to help some, even just for comfort and relaxing), there are many herbs and supplements that may help(like proboitics and fish oils, vitamin D,and essential oils, it's important to buy high quality products), if you can find a good herbalist or naturopathic doctor that would be ideal. Changing the diet by just trying different things, I know there is no one answer, but I hope this can help, and I pray your babies get better, living with crohn's is no life for anyone especially a little one.

10/05/2009 12:01 PM
lahlily
Posts: 10
New Member

hej lively5! well, i do know that with a crohn's flare up you can have a fever...but i havent noticed it with j. but what we have noticed and the doctor confirmed it is that when he is sick (runny nose, cough or congestion) then it triggers a flare up... every time it seems... and then come's the runny, mucousy, bloody poo's. it is a vicious cycle it seems as they have a lowered immunity due to their disease which makes them susceptible to EVERYTHING and just when you think youre making some progress with a medicine and things are going well, they get a little bug and boom, starts all over again... it is 1 step forward, 2 steps backward you know?

unfortunately j has only ever had 1 formed poo and that was this summer when he was on prednisone. he has now been on flagyl (antibiotic) for 2 weeks and we are waiting for formed poo... doctor has decided to keep him on med another couple of weeks to see what happens... fingers crossed... the good thing is i dont think he has had any blood since on this med... at least not what we can see

so sad that she is crying over belly pain... i am sorry for her and you...

yes, you can give over the counter meds but NOT IBUPROFIN (it can cause bleeding in a crohn's patient)... but tylenol pain med. is fine according to my doctor.

hope she is feeling better now. glad we have "found" each other too! finally someone to talk to who understands exactly what we are going through

lisa


01/27/2010 05:17 PM
kristinhou

hi ive had crohns since age 6 and it was hard knowing i was sick but didn't understand it they think i had it as an infant but didn't show signs till i was 6 i'll tell u this no kid should have to experience this horrible disease especially kids

07/22/2012 03:44 PM
Fostermomof3
Posts: 1
New Member

I am a foster mom hoping to soon adopt a sibling set of three. D a three year old and her twin brothers H & J, they are 21 months old. The twins were born at 27 weeks 6 days due to drug use of their biological mother. I have been bringing J to specialist since he was born trying to figure out what is wrong with him. I was told time and time again that he was a healthy boy with acid reflux and that he was small because he was a preemie. I tried to believe the doctors but I just couldn't shake the feeling it was more than reflux. His identical twin brother was truely a healthy baby, twice the size of J. After numerous days of runny explosive stool I decided to bring him to Children's hospital ER (July 2nd), we are still here. J got a scope completed on the 6th showing IBD. We were just told yesterday that he has Crohns. He acts and seems perfectly happy but doesn't gain weight and refuses to eat. He has a pic line (spell?) sending him vitamins, nutrients, and meds. They are now telling us he may need to try remicade (spell??) and that we need to decide if we are okay with it. This is all very new and overwhelming for me. I thought maybe if I talked to others that felt with this it may help.

07/23/2012 06:54 AM
libit
libit  
Posts: 2449
Group Leader
I'm an Advocate

FosterMomof3 so very sorry your little boy is sick with IBD. Sad

Indeed this is some very scary medications they are talking about. Being in your shoes I would have a hard time trying to decide what to do. Have they offered any other alternatives?

Try checking out also the crohns and colitis website for kids and teens with crohns.

www.ucandcrohns.org

Please keep us updated and let us know how he is doing.....

Post edited by: libit, at: 07/23/2012 06:55 AM


07/23/2012 11:01 PM
Dgwinvre
 
Posts: 55
Member

No young kids here, but after I was diagnosed, I told my daughter to get checked out because she has always complained of tummy issues. Of course people just think you are a faker with tummy troubles, nothing is really wrong with you. But we know better. I will pray for you all, as an adult with this problem, they will have a hard time of it.
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