Anyone here have a baby with Crohn's Disease? I need advice!

[SebsMama]

Hi my name is Rachel

My son is only 7 weeks old and has already had to have 2 perianal fistula surgeries for abscess IAD. Crohn's disease was mentioned by the surgical team but when I googled, I found that it is extremely rare in babies. My husband and I have no family history of Crohn's disease but I have coeliacs disease and so does my 4 year old daughter (not sure if it's related or not)

He is undiagnosed and not scheduled for investigation into the possibility of Crohn's because he has gained weight nicely since birth (breastfed)

What are people's opinions on his case? Here are some details:

- He has Gastro-Esophageal Reflux Disease treated with Omeprazole
- He was born 3870g and is now 4660g at 7 weeks old
- His poos have been very watery ever since birth (almost as if he wees out of his bottom)
- No family history of Crohn's but history of other auto immune disease - coeliacs disease.
- First perianal fistula/abscess surgery at 6 weeks, second at 7 weeks

Any advice of how to proceed and how to advocate for my little man? Thanks in advance

 

[DJW]

Oh my gosh, I'm heart broken to hear this. We have a fantastic group of very knowledgabe parents here. They'll be along this morning.

Sending you my support and prayer.

 

[Catherine]

Hi Rachel

Welcome to forum. Sorry your had to find us.

Has your son had any blood tests done? Is he seeing a pedi GI?

Is he being seen at the a Princess Margaret's GI clinic?

http://www.pmh.health.wa.gov.au/services/gastroenterology/

 

[SebsMama]

Hi and thank you

Catherine yes we are currently in PMH he had his second surgery this morning. But the surgeons seem to disagree with one another. One surgeon was talking about possible investigation into Crohn's but another more senior doctor seems to think it's not. I don't know what to think! I think the plan might be for him to recover from this abscess and see how he goes from there. I am just concerned that if he does have issues in his gut that we won't catch it in time. We only just found the first perianal abscess by chance, when it surfaced on his bum cheek one night. Within an hour it had doubled in size and he nearly got very, very sick. Goodness knows how long it had been festering before we found it. I'm so worried for my little man. And very confused as to what to think...

 

[SebsMama]

I read through that link you posted. Thank you.

 

[my little penguin]

http://www.iagh.org/Portals/44fa756...3, Number 1, Spring 2008/Dr.Najafi-13-1-1.pdf

Paper on Ibd in infancy.
Hugs

 

[Momtotwo]

Welcome to the forum. My heart breaks for you, and I can't imagine how difficult it must be to have conflicting opinions from the doctors. I guess my first thought would be- why not explore the possibility of Crohn's/IBD? As long as the work-up isn't extreme, it seems like a reasonable approach. I don't know anything about diagnosing Crohn's/IBD in an infant as my son was 7 when he was diagnosed. Other parents here will have advice.

 

[Farmwife]

Welcome to the forum.:hug:
Poor little guy but am happy your watching over him.
My girl is 5 but has had issues since birth. There are other GI diseases that can afflict a babies track, so I think its reasonable for docs to try to find the cause.
My child has ALWAYS put on weight, however she has never had big growth spurts like her brother.
We have a Young One Support group here. Please feel free to join. We do have a couple babies on the group.
http://www.crohnsforum.com/showthread.php?t=59511

 

[Catherine]

Paging DustyKat for input.

 

[Catherine]

Is your son still in hospital? Do you have a social worker?

Are both doctor that have seen your son surgeons?

 

[DustyKat]

I am in Sydney for a few days so only using my phone, not the most ideal medium for me! :lol:

Certainly a child having Crohn's at that age is very far from the norm but not unheard of.

My own personal opinion, coupled with the fact that Crohn's has already been mentioned, I wouldn't wait but rather insist that some of the more non invasive tests be run now. That being bloods, including genetic, and faecal tests including Faecal Calprotectin. I don't mean just for IBD but also for coeliac and any other relevant disorders. That way if the tests do show an anomaly it may well point you in the right direction and if they show nothing of significance then you have good baseline readings for future reference should they be needed.

To me diagnosis should be a process of elimination rather than a wait and watch approach. I know no one likes the thought of uneccessary testing, especially for children and babies, but in my mind the guilt of uneccessary testing is far less than the guilt of not acting sooner when my gut told me all was not right.

Dusty. xxx

 

[CrohnsKidMom]

Just wanted to send my support and prayers. This is so upsetting, I'm sure. My son was dx'd last yr at age 8, but when I think back there were signs of Crohn's when he was a toddler. This is definitely rare in an infant. I would go for all the testing you can, and even go for a 2nd opinion if you don't feel you are getting the answers you need. Take care and keep us posted on how your little guy is doing.

 

[malorymug]

My boy had a perianal fistula at 3 months old and then asymptomatic until 10 years old, diagnosed last spring at the age of 13. Good luck with your little one's healing.

 

[kimmidwife]

Hi Sebsmom,
Sorry you guys are going through this. I honestly agree with Dusty Kat. It is better to investigate then take a wait and see approach. I think for your peace of mind as well as for your little boys health seeking answers seems like the right direction to go in. Please keep us posted on how he is doing.

 

[tzvia]

Do you breastfeed or use formula? If you breastfeeed, perhaps he he is reacting to something that you have eaten that is an allergin? If formula, maybe you need to switch to another type or go to breastmilk? Just some thoughts..

 

[SebsMama]

Thank you for all your replies. We were discharged the day after his second surgery (Thursday) and we are back again (Sunday) because he had an unexplained high fever and lethargic, floppy etc.

Turns out he now has a UTI. The medical team and surgical team are meeting tomorrow to discuss the possibility of a communication between fistula and bladder. He is also going to have a renal ultrasound. Would it be wrong of me o ask them whether they could do an endoscopy? I just don't want him to have any more general anaesthetic than is needed because they had a bit of trouble extubating him on Wednesday. What are people's thoughts? I'm so scared for what's in store for my little guy. I will be asking about the tests mentioned in your replies too. Thanks so much for giving me a starting point

 

[SebsMama]

Oh and he's breastfed and I was told not to eliminate dairy from my diet just yet because if I needed to then I would have to go under supervision of a dietician for his and my sake as it needs to be completely dairy free. So at the moment I don't know what allergens he could have...

 

[SebsMama]

And as an afterthought it would be good if they agreed to do blood tests like coeliac gene, and other stuff while he already has a cannula in.

 

[kimmidwife]

I would ask about about a colonoscopy if he is already going to beunder general

 

[CrohnsKidMom]

Perhaps there is a limit to how many procedures can be done while your little guy is under anaesthetic, but I agree they should do as much as they can while he is under... including blood draws, if possible. I will be thinking and praying for you and your baby.

 

[my little penguin]

Renal ultrasound doesn't require any anesthesia even in an infant .
Just gel and a squirmy baby.

 

[xmdmom]

Very sorry you and your son are dealing with these difficulties.

Apparently there is some controversy about perianal fistulas in infants.

The features of perianal abscess and fistula-in-ano in infants are different from those of older children, and there is controversy regarding their treatment.

from a JPediatrics article 2004. It studied 98 infants

The study included 98 infants. Perianal abscess was found in 77 patients (75 males), and fistula-in-ano in 21. No infant had an underlying illness.

So apparently Crohn's was not found in this group of infants. As you know, Crohn's is quite rare in infants but possible.

No advice -- just hugs! I hope the doctors figure out what's going on asap and your son is feeling better soon!

 

[my little penguin]

http://m.kidshealth.org/parent/system/medical/renal_ultrasound.html

 

[LauraJ]

Going completely dairy free and breastfeeding us completely manageable. We worked with a dietician, and it worked out well, my eldest was dairy free until age 4 when she outgrew her allergy. She breastfed until 16 months.
We have a great pediatric allergist/immunologist. She told me it takes 2 hrs for dairy protein to get into your milk, and 6-8 for it to be gone. It can take 2 weeks for all traces to be completely gone. I used to pump and dump, if I for example had ice cream at a birthday party. When my daughter started sleeping through the night I would have dairy, then nurse her straight away. She had an anaphylactic allergy to milk even traces in my milk.
It's bit of an adjustment but I found out coconut milk based ice cream tastes 100% better than normal ice crwam!
1 tip I would give if you gave to go dairy free, pump and freeze, even if it's only a few ounces a day. Then you always have a backup just in case.