Infantile Crohn's Disease

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baby_wt_crohns

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Hello everyone,

I could not find a thread that has discussion of children under 1 with Crohn's disease, so I am starting one in hopes somebody has a story to share similar to ours.

My son started having strings of blood when he was about 2 months old, my pedi was not concerned and kept saying not a big deal. I kept questioning if it is some sort of allergy and I was laughed at. At 6 months he developed a diarrhea and blood increased significantly. So after 3 visits to ER, his symptoms were taken seriously and he had Meckel scan (negative), colonoscopy and endoscopy. It showed ulcers all over small and big intestines that seem like Crohn's disease. We are still waiting for some immune deficiency test results. Genetic tests to be done once he gets better.

He is in Neocate and Flagyl for two weeks now. After first few days, diarrhea stopped and blood almost disappeared, but then low fever developed and diarrhea and blood returned.

I am so depressed, puzzled and worried to my stomach. GIs are saying possibly Crohn's but they are not sure yet. I am just wondering if somebody has at least a slightly similar story or any story with children under one.

I am considering fecal transplant, anti_MAP therapy, chiropractics, anybody who could ease the symptoms and make this nightmare stop.


Tanya
8 months old son with possible infantile Crohn's
 
Tagging Malgrave her son was dx as an infant
Infantile crohns is very different from early onset crohns ( ages under 10 at dx)and very early onset crohns ( under 5 at dx).

Tagging Tesscom since she is in Canada
Can you get a second opinion at Toronto sick kids .
They are the best led place for crohns I know of in Canada .
Since your GI may not have ever seen an infant with crohns .

There are immunodeficiency that can mimic crohns as well especially in infants
 
http://mobile.journals.lww.com/jpgn...ewer.aspx?year=2000&issue=04000&article=00023

Crohn's disease has rarely been observed in infancy. The first known infant affected by this disease was reported in 1947 by Koop et al. (11) Miller and Larsen (12) in 1971 reviewed the literature and summarized 12 cases of Crohn's disease occurring in the newborn period, including 6 of their cases. In 8 of the cases reviewed, the disease involved the small bowel, whereas in 3 the disease involved the right colon and the terminal ileum. One patient had only colonic involvement. Seven of 12 patients reviewed by Miller and Larsen died after surgery (12). In our series the inflammatory process involved the anorectum and colon extensively, with sparing of the small bowel and with typical histologic changes (13). The most prominent clinical signs in our patients were severe perianal disease consisting of ulcerations, fissures, and fistulas. Surprisingly, none of those previously reviewed and infants reported by Miller and Larsen had any perianal involvement (12).

Mezoff et al. (2) reported a 4-week-old infant with signs and symptoms suggesting Crohn's disease that initially was associated with central nervous system thrombosis and later, at the age of 6 months, with severe perianal inflammation. Furthermore, our patients' clinical course was different from those reported previously. The patients reported by Koop et al. (11) and Miller and Larsen (12) had a prodromal period of diarrhea lasting from 2 days to several weeks, followed by signs of intestinal obstruction. All but two infants required emergency surgery with resection of the involved bowel. Our patients initially showed severe perianal disease, failure to thrive, diarrhea, and anemia and were operated on electively. Two of them were operated on after a prolonged period of unsuccessful conservative treatment. The remaining two patients were operated on earlier after a short period of medical therapy, in view of our early experience.

Although steroids and 5-acetylsalicylic acid are reported to be very useful in most Crohn's patients (14), all our patients failed to respond. Immunosuppressive agents, such as azathioprine or cyclosporine as suggested by some (15), were not used in our patients. The previously reported cases of infantile Crohn's disease (12) have not had conservative treatment before surgery because they were mostly treated for undiagnosed diarrhea and had surgery due to mechanical obstruction.

When the colon is severely involved with Crohn's disease, the surgical options include: fecal diversion, subtotal colectomy with ileostomy, subtotal colectomy with ileorectal anastomosis, and segmental resection with anastomosis. In our opinion, as well as those of others (9,10), in Crohn's colitis, subtotal colectomy with an ileostomy appears to be the procedure of choice. Ileorectal anastomosis at a later date is possible. Long-term follow-up is necessary to ascertain the validity of this concept. Ritchie (10) compared results in 182 patients who underwent subtotal colectomy and ileostomy with 78 patients who underwent subtotal colectomy with ileorectal anastomosis. The patients who underwent ileorectal anastomosis had a much higher recurrence rate. Occasionally, Crohn's colitis may be limited to one area, as it occurred in our fourth patient in whom only the rectosigmoid was involved. In this case, sigmoidectomy and colostomy were performed.

Crohn's disease occurs with variable frequency in different populations. Epidemiologic data show that the Jewish Ashkenazi population has a higher risk of development of inflammatory bowel disease (IBD) than do other ethnic groups (16). An epidemiologic and clinical study of IBD performed in the Bedouin-Arab population of southern Israel between 1981 and 1990 (17), showed clearly the rarity of the disease in this population. In complete contradistinction, all our cases occurred in one extended Bedouin family who had classic findings of colonic Crohn's disease. Familial occurrence of colonic Crohn's disease is well known (4–6). Genetic factors have been implicated in the origin of the disease (7,8). Linkage data derived from genome-wide scans of sibling-pair families with IBD have identified four loci on chromosomes 3, 7, 12, and 16 as potential sites for susceptibility genes (8,18). So far, we have found no supportive evidence for these linkages in our patients. To the best of our knowledge, this is the first report of Crohn's disease in siblings (not twins) in early infancy.

In conclusion, based on the present study, infants with colonic Crohn's disease respond poorly to conservative drug therapy and may present a better outcome, after early surgical intervention.
Click to expand...
 
Paging Pilgrim

Both Pilgrim and myself have young ones.
My Grace was dx at 3 but had suffered since 3 months old.
Mr Chicken is right, your babe being under 1 needs to be seen by GI's that know what there doing.

My girl has been on EO28 Splash, now she does Boost mouth but also has done it by nose tube (ng tube) and now has a g-tube (surgically implanted).

Any talk of meds yet?
 
Oh, what a terrible thing. I think it does make sense to get to another hospital for a second opinion no matter what the diagnosis is. But I do not know the reputation of the Pediatric GI department of your hospital in Edmonton. It could be very good.

Calgary isn't too far, it might be something to look into. We use Children's in Winnipeg. I like our team, they are very good, but it is true that they are overworked and understaffed. It varies from hospital to hospital.

What I have been told by a GI is that here in Canada they are seeing more and more cases with younger children coming in with IBD.

My daughter was diagnosed at 3 which is very early onset. But as Mr. Chicken points out, Infantile Crohn's is another subset.

I feel terrible that you have to watch your child suffer this in infancy. I would really stay away from chiropractics for a baby. But you should talk to your GI and team about the possible treatments and listen to what they say.

Flagyl didn't do anything for my daughter when they gave it to her, it just made her feel worse. Neocate may be a good plan but maybe the formula needs to be adjusted (there are different formula's and maybe another would work better).

Give lots of cuddles. I remember my daughter as an infant. I did see blood then once but ignored it. She was such an angel. Always so quiet and watching. Sometimes I wonder if she was in pain? It's so hard to know. I'll be thinking about you. Mr. Chicken posts thoughtful research articles above if you have time to read them. There is a huge learning curve with Crohn's.
 
Thank you all for replying. I feel like I am not alone. Flagyl worked the first week, diarrhea was gone and blood disappeared. But then he developed a low grade fever and everything came back.
We are considering going to Toronto, Hospital for Sick Children. But we need referral and so far we did not get it from our pediatrician. She tells me to wait untill GIs exhaust all resources here. But I feel like everything takes forever.

I did contact Dr. Chamberlin from US about this and he contacted Dr. John Aitken in New Zealand. Dr. Aitken responded saying he have seen another case like this from Wisconsin.
 
I am so sorry you are going through this. My son was 8 at dx, but he had indications of the disease as a toddler. I hope you get a good treatment plan going that will get your baby well again. Take care and keep us posted!
 
My son had bloody diapers at a month old. It was before my crohns diagnosis so I never brought up crohns possibilty. He was said to have a milk protiens allergy and was put on allementum formula (which made him very sick, vometted a lot) he's had bloody stools off and on. He's 8 now and was diagnosed with ee. I know it's not the same as what you are going through but I do understand how you feel.
 
I'm so sorry you're dealing with this with such a young child. :(

My son was diagnosed at Sick Kids in Toronto - they have a large IBD clinic and, no question, lots of experience. But, as you are so far from here, is it possible to just get a second opinion from records and test results only from Sick Kids?

What resources are you still waiting to try in Edmonton? If it doesn't take too long to get tests completed, it might be helpful to have all tests done so they can be used as a reference if you do go to Sick Kids (or another hospital).

I don't know what options you have re formulas but I have heard of kids here (although not as young as yours) who did not do well with one formula but had improvement which switching to another. Perhaps worth looking into??

If you do come to Toronto and need any help, please let me know... :ghug:
 
Welcome,

Sorry to hear about your son. I see you are in Edmonton. Not sure where you are currently but I believe the University of Alberta hospital is probably the best in terms of IBD and research. The Stollery is great for kids but I'm not sure how much they do in terms of research and knowledge of rare diseases like infant Crohns. A second ( out of town) opinion may be a good option, even if it's just looking over records.

Good luck.
 
baby_wt_crohns said:
My son started having strings of blood when he was about 2 months old

I am considering anti_MAP therapy
Click to expand...

MAP's incubation period tends to be several years, not two months. Incubation periods tend to be shorter in babies, but not that short, MAP grows incredibly slow. Young animals often get infected at birth, but it takes years before they show any clinical signs.
 
Last edited:
Another Canadian here... VEOIBD (Very Early Onset IBD) research is getting better. SickKids has done a lot of research on it. Griffiths et al have submitted research on it. I will see what I can find. From what I remember from the education nights the earlier the age of dx the more genetics play a factor. I have a friend out your way who has crohns, & so does her kid. She doesn't do the forum much anymore but I will send her a message for tips specifically to Alberta. There is a great Crohn's Colitis Chapter out there. I think it is Jode that is chapter president. Reach out to CCC I am sure they can help too. Once I find some info I will post.

Big hugs!
 
Alberta Children's hospital works with VEOIBD. Check out the NEOPICS site: http://www.neopics.org/home.html

If you are looking for a good referral in Sickkids, I would suggest Dr. Thomas Walters or Dr. Alexio Muse in relation to VEOIBD. Walters has GREAT bedside manner. I don't know about Muse. I think he focuses more on the research side. Ditto what Tesscorm says. You need help, tips coming to Toronto happy to help. I'm at sickkids all the time. My kid sees Griffiths. Very knowledgeable, but would not be on the top of my list for young kids. Her personality & bedside manner suits more for older kids & young adults.
 
Totally agree with you SM - Walters was S's GI and we both liked him. Griffiths was the GI that admitted S and then diagnosed him... yes, bedside manner was a bit abrupt. :eek: She was the GI that tentatively diagnosed him in less than 4 hours! And, if I remember correctly, she is head of the IBD clinic at Sick Kids.
 
Just sending support your way. I was diagnosed at 14 and that was hard enough. Can't imagine what you're going through with your baby, since I have kids of my own now and worry that they'll get this. I've done well on antiMAP and know Dr. Chamberlin and John Aitken, but it does seem like MAP would not act quite this fast. Did you think about getting him tested for it at John's lab? He's doing some amazing things. Also, you probably already thought of this, but what about celiacs? Will send all good thoughts and wishes your way that the docs can isolate what's going on and return your child to full health quickly.
 
Tesscorm Griffith's is D's doc. It took us a year to feel good with her. She does know the latest info, hot off the presses so to speak. If it wasn't for her, surgery would have already happened. She have us treatment options that were being tried in Israel, UK that many docs don't have the chance to collaborate with.

I hear Alberta Children's has great access to info too, but if you need the 2nd opinion, you can't beat SickKids. Waiting for the 1st appointment can take a while. They are a sought after hospital globally! I hope you are able to get all the local support you need. Email Crohn's Colitis Canada. They might be able to connect you with someone closer to you, or at least the support group.http://www.crohnsandcolitis.ca/site/c.dtJRL9NUJmL4H/b.9012683/k.9F5F/Local_Chapters.htm
 
I feel overwhelmed, thank you so much for all the support. Honestly did not expect it. We are with Dr. Wine at University of Alberta/Stollery. He seems very knowledgeable and eager to get my son feeling better. He is working with Alexio Muse in Toronto Sick Kids and we got already tested for genetics, waiting for results.
I am arranging at the moment to send breastmilk, blood and biopsies to Johh Aitken in New Zealand and Dr. Herman Taylor in London.
I contacted Boston Children's Hospital and they like everything done so far by our Dr. Wine.

Praying everyday that this monstrous disease leaves my baby's body and for all of other sufferers.
 
baby_wt_crohns said:
Hello everyone,

I could not find a thread that has discussion of children under 1 with Crohn's disease, so I am starting one in hopes somebody has a story to share similar to ours.

My son started having strings of blood when he was about 2 months old, my pedi was not concerned and kept saying not a big deal. I kept questioning if it is some sort of allergy and I was laughed at. At 6 months he developed a diarrhea and blood increased significantly. So after 3 visits to ER, his symptoms were taken seriously and he had Meckel scan (negative), colonoscopy and endoscopy. It showed ulcers all over small and big intestines that seem like Crohn's disease. We are still waiting for some immune deficiency test results. Genetic tests to be done once he gets better.

He is in Neocate and Flagyl for two weeks now. After first few days, diarrhea stopped and blood almost disappeared, but then low fever developed and diarrhea and blood returned.

I am so depressed, puzzled and worried to my stomach. GIs are saying possibly Crohn's but they are not sure yet. I am just wondering if somebody has at least a slightly similar story or any story with children under one.

I am considering fecal transplant, anti_MAP therapy, chiropractics, anybody who could ease the symptoms and make this nightmare stop.


Tanya
8 months old son with possible infantile Crohn's
Click to expand...

Tanya, our story is very similar. After multiple abscesses an ER Dr finally decided maybe we should see GI. At 10 months old we finally have a diagnosis although we don't exactly know what this means for our sons future. Docs seem cautious when talking about the future. We just don't have a lot of answers yet. Hoping you can get a referral to Sick kids as they have been the only glimmer of light in what has been a dark time in our life. I wish I had advice to give but we are very new to this as well. Flagyl seems to be working right now but it has only been a few weeks since the last abscess. Please keep us posted on your progress. I wishing you luck.
Feel free to message me any time. We were without a diagnosis for a very long time as well. Even after his scope revealed ulcers and his MRI showed a fistula they still wouldn't put a name to it. Just that he had a chronic inflammatory disease.
Bianca
 
Though lots of research is being done on VEOIBD there isn't a lot of studies on these kids diagnosed & how they are at 10, 15, 25 etc. There is not even much research on adults diagnosed as kids. When I attend educational symposiums asking about the long term studies, there is very little understanding on long term results. I hope these things are funded more for us all to give us hope for our children.

Littlefield which hospital is your son being treated at? Are you in Sickkids or are being transitioned there?
 
I just wanted to update everyone. My baby responded well to Cipro and was doing well, but then we reduced the dose and I got him vaccinated and the bloody stools returns, then to make things worse I gave him a probiotic, that initiated diarrhea on top of everything. Have an appointment with GI again this month. Im even afraid what is next for my little angel.
I know some people were posting that MAP is not a possibility since it grows slow, but my breastmilk got tested by Dr. Aitken and Dr. Hermon Taylor and my milk contains MAP. Now the results came from Dr. Hermon Taylor and my son's biopsy reveals severe MAP infection. My only hope is that vaccine will help my baby. For now I will be asking my GI to try a different yet antibiotic.
Paying for everyone to get cured. This disease is a silent invisible monster.
 
SupportiveMom said:
Though lots of research is being done on VEOIBD there isn't a lot of studies on these kids diagnosed & how they are at 10, 15, 25 etc. There is not even much research on adults diagnosed as kids. When I attend educational symposiums asking about the long term studies, there is very little understanding on long term results. I hope these things are funded more for us all to give us hope for our children.

Littlefield which hospital is your son being treated at? Are you in Sickkids or are being transitioned there?
Click to expand...

We are at Sick kids now. We were referred from McMaster Children's hospital when they decided it was out of their scope. Dr. elkadri (GI fellow) has been great. Technically we are under the care of Dr. Muise but we haven't actually met him yet.
 
Sorry to hear you are going through all this with your little one. I am glad your doctors are taking it seriously.
 

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