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Crohn's Disease Forum » Parents of Kids with IBD » Paneth cell metaplasia in 4 month old


01-14-2017, 03:21 AM   #1
Emilymc13
 
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Paneth cell metaplasia in 4 month old

Hi everyone!
Just come across this forum, seems so interesting and supportive, so I thought I would get your views on my little girl. Even just to chat to people who maybe have gone through the same situation would be nice!
So here's our story so far...
Daughter was born, and at 2 weeks old, started having mucus and blood in her poo. She was breastfed so we put it down to a dairy/soy intolerance as her older brother was diagnosed with this so I cut out all dairy and soy immediately. The blood and mucus didn't go away, even after 4 weeks completely free. So I started cutting out other allergens, but the mucus and blood persisted. She also started to become refluxy, and wasn't putting on weight.

We decided to change to formula, and was exclusively on Elecare from 10 weeks old. But still her poos didn't clear up, and the reflux got worse and sometimes had blood in it. She was put on Nexium at 12 weeks, a low dose of 10mg a day. She had at least one very dark green watery poo with fine black grit in it, and then a mucusy poo a day, like clockwork! We got referred to a paediatric gastroenterologist.

We saw the gastroenterologist within a couple of weeks and he suggested an increase to 20mg of Nexium a day, and to try Neocate formula. She had a reaction to the Neocate, diahorrea and vomiting and refused to drink it. So back onto the Elecare!

We were moving from Sydney to NZ in 8 weeks time, so the gastroenterologist suggested to book in for endoscopy and colonoscopy before we go, but he ended up having a cancellation when she was 17 weeks old. So she had them done with biopsies. From what he could see, there was only slight inflammation in her bowels, and a bit in her oesophagus, but nothing to explain the amount of blood and mucus in her poo.

All the biopsies came back fine, apart from the ones in her left/distal colon and rectum. All showed Paneth Cell Metaplasia. So because none of the other results came back with anything significant, the doctors are a bit lost. He thinks it could be the start of something brewing, namely IBD.

He put her on Flagyl, as he decided it was too risky for a sulphur treatment in case she had a reaction so young, and there was another medication which I can't remember the name off, but it would have been impossible to give it to her because of the form it came in (pill I think). So decided on the Flagyl and after 4 days of being on it, she did a mustard coloured, peanut butter textured poo! I couldn't believe it! It seemed normal! But that lasted a week and a half and we were back to the mucus.

We moved to NZ a couple of weeks after starting Flagyl, and the GP here has been very casual about referring her to a gastroenterologist. It's very frustrating! He even tried to tell me that Flagyl is not used to treat IBD, which I know isn't true. So now just waiting to hear back from the referral system as to when we can see a gastroenterologist.

A very long story, I'm sure yours are all very long too!! Any insight or wise words would be greatly appreciated
01-14-2017, 11:13 AM   #2
Jabee
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Hmmm. I cam across this abstract on Paneth Cell Metaplasia. There are other abstracts listed on the same webpage. It sounds like your daughter should be followed by a GI due to the location of the metaplastic cells. I know it's really important that very young children get diagnosed and treated quickly because crohn's behaves differently in small children.

https://www.ncbi.nlm.nih.gov/pubmed/11851832

There is a section on the forum for parents of children with Crohn's, and the parents are very knowledgeable and can give you great advice.
01-15-2017, 12:03 AM   #3
Emilymc13
 
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Thanks Jabee, I've been trying to educate myself with all the articles on it online. When you say Crohn's behaves differently in young children, in what way?
Thanks again
01-15-2017, 12:10 AM   #4
my little penguin
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https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3805279/

Crohns in infants is completely different than very early onset Crohns (kids under 10 or 6 depending on the country )
Which is different than pediatric Crohns 10-17 at dx
And way different than adult Crohns

Research section here has lots of articles

http://www.crohnsforum.com/showthread.php?t=43002

That should get you started

Immunodeficiency should be high on the list of things
Since it can mimic Crohns in veo ibd
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01-15-2017, 12:15 AM   #5
CarolinAlaska
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Crohns is more agressive and difficult to treat in younger children, I think.
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01-15-2017, 02:15 AM   #6
Emilymc13
 
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Oh wow what an amazing resource! Gonna have a good old read of those tonight!

Oh bugger, I really hope we've caught it early then, or it miraculously cures itself....

I also wanted to ask in regards to a 'flare', if it's not treated, would it gradually get worse, or can it get better on it's own?

Thanks so much
01-16-2017, 10:12 PM   #7
gotumtum
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Emilymc13

Hey - FYI - If you have to wait ages to see a gastroenterologist through the public system there is another option if you can afford it.

Find a gastroenterologist that you like the sound of on the internet or maybe ask around eg Plunket Nurse etc. Phone and make an initial appointment - if you explain the situation you hopefully won't need a referral from your GP, esp if you offer to email them copies of any relevant info so the GI can brush up beforehand. and pay for this one appointment yourself (ask the cost beforehand !) shop around if necessary for a cheaper option.

The gastroenterologist can then refer you back into the public system ( quite often to himself or a co-worker) for any tests or for any appointments from then on to save you money.

I would also seriously consider getting health insurance now for your little one ( and any other family members) if you can afford it at all. Even if they exclude some stuff eg gastro stuff now, the public NZ health system is going downhill fast and I repeatedly can't even get on a waiting list for a procedure, or to see specialists - they just suggest I am 'managed' by my GP whatever that means.

I have Southern Cross wellbeing 2. IF you are near to Christchurch Steven Ding Gastroenterologist is very good, and actually listens.

Several other things to note - if you do not hear about an appointment for scan or specialist after 2 weeks then chase it up.

1)-phone reception at dr to make sure it was dictated and then emailed/faxed - check how and when it was sent.
2) if sent to hospital - phone that department and ask if it was recieved, and if so approx wait time etc - if necessary explain the situation and offer to go on a cancellation list.
3) If from hops to another specialist/referral for appt then phone the hosp switchboard and ask to speak to the specialists administrator/secretary to follow up appts/referrals/tests
4) Some places have a central booking unit - instead of diff departments at the hospital booking their appointments - keep on their good side!
5) Some places (poss more rural places) have a local health centre/outpatients/blood test/hub where the district nurses are based etc. The receptionists can usually check on the progress of referral letters, test results in the hosp computer system.

Basically - chase things - it is soooo hard to advocate for yourself - or your little ones sometimes, but necessary

I wish you the very best of luck with our health system!
01-16-2017, 11:01 PM   #8
kimmidwife
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Welcome to the forum. I just want to second what my little penguin said about immune disorders sometimes mimicking Crohn's disease in very young children and infants.
You should try to see a doctor that specializes in immune disorders and get testing done to rule it out. Usually an immunologist would be the doctor to see.
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01-17-2017, 02:45 AM   #9
Emilymc13
 
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Wow thank you so much everyone for replying.

I've already been chasing up her first referral to see the paediatrician, took the GP 3 weeks to do, and once we have an appointment I'll be contacting our paediatric gastroenterologist we saw in Sydney to check if he thinks everything is going well. He was very kind and said we can contact him whenever we need to and he will get involved if things aren't moving along quickly enough. I'm very good at making sure my kids health is being dealt with efficiently, but this GP came so highly recommended that I felt like I had to trust him to get on with it! Plus it seems the Xmas holidays go on for a long time over here.

I think we were doubting the immune disorders because of the Paneth cell metaplasia, but I will definitely ask about that too. She is going through a funny patch right now, lots of mucus in her poo, and being very agitated while awake, and sleeping a lot which is not like her. She seems happier after she has done a yukky poo, until the next one starts brewing. I was hoping it was her teeth coming through but still no sign of those yet. She's almost 7 months old now.

Thank you all so much for your input, it's exactly what I was looking for
01-17-2017, 04:10 AM   #10
gotumtum
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Its awesome that you are onto it and collecting people in your corner

I have found this site is an amazing resource of information, support and encouragement. Even if you are finding it tough going and need to vent.

Good luck with the teething when it arrives!
01-17-2017, 04:16 AM   #11
Emilymc13
 
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Its awesome that you are onto it and collecting people in your corner

I have found this site is an amazing resource of information, support and encouragement. Even if you are finding it tough going and need to vent.

Good luck with the teething when it arrives!
Thanks gotumtum

I take it you're in NZ too, we've moved to Tauranga, along with everyone else it seems!
01-17-2017, 05:59 PM   #12
Farmwife
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Hello and welcome.
My girl was dx at 3 years of age but had suffered since infancy.
It's hard enough to dx a child with crohns if they don't fit in a neat little box
But sadly most don't.
It took awhile for my girl to get help.
She also has juvenile arthritis. It's not totally unheard of to have more than one autoimmune disease.
Please ask as much as you like.
We're here to support each other!
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01-17-2017, 06:01 PM   #13
Farmwife
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I'll tag in polly13 and Pilgrim
They both have young ones!
01-17-2017, 08:40 PM   #14
Emilymc13
 
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Thanks everyone! Just got a call today from the hospital, she's been classed as urgent, so is seeing the head of paediatrics next Friday. I guess from there we'll see the gastroenterologist
01-17-2017, 09:44 PM   #15
Jabee
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I'm so glad you have an appointment for next week. The head of pediatrics should be able to get you an urgent appointment with a pediatric gastroenterologist sooner rather than later.
01-17-2017, 10:23 PM   #16
kimmidwife
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That is great news! Let us know how it goes!
01-17-2017, 10:24 PM   #17
my little penguin
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Great news !!!
Hope they get your kiddo into a GI soon
01-24-2017, 09:46 AM   #18
polly13
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Hi EmilyMC13, I had answered your question regarding the carrot poo! but I hadn't read this thread. Just to give you a little history on my little girl Lucy - she is now 8 and was diagnosed with Crohns disease when she was 2 (cant believe its been 6 years), as you probably know from reading on here no two presentations are the same when they are small. Lucy's symptoms started when she was about 9 months old but because IBD is so unusual in babies/toddlers it took us a year to be taken seriously and she was treated for everything from reflux, to hand, foot and mouth to constipation before we got to even see the paediatric gastroenteroligist - so its good that you have already seen one and are seeing another this week. What struck me about your post was where you said your little girl gets really agititated before she makes a poo and feels slightly better afterwards until the whole cycle starts again - thats how Lucy used to be. The only advice I would give you because it was a lesson learned for us, is to keep pushing and dont be put off by doctors not taking you seriously, you are the mom and you are living with this everyday and you know better than anybody if something isnt quite right. Keep a diary and keep taking pictures of unusual poo as it will help the GI in making a diagnosis and forming a plan. I hope you appointment goes well this week.
Polly
01-27-2017, 02:55 AM   #19
Emilymc13
 
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Hi everyone, here's an update of what happened today.

She's getting referred to the gastroenterologist, but the paediatrician said he would talk to them about starting pentasa without having to see her first as it might be a bit of a wait. He didn't want to put her on it until he had spoken to them though. He also included the gastroenterologist we saw back in Sydney in the letter. Still no official diagnosis about what is going on.

We had a calprotectin test done a week after she stopped the Flagyl, and it came back as 500, apparently it's supposed to be 50? I thought her poos were pretty good when we did the sample! She's also dropped off her growth curve a bit, but she is still gaining so that's good.

I've laid off the solids for a couple of days as she did 5 huge mucus filled poos yesterday. No visible blood yesterday but today there is streaks through the mucus.

Can I ask what 'old blood' looks like in the poo? They said black flecks, which she has, but they almost seem like globs/blobs so I'm not sure if it's blood or not. Happy to see photos of anyone has them!!
01-28-2017, 03:19 AM   #20
Emilymc13
 
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Hi EmilyMC13, I had answered your question regarding the carrot poo! but I hadn't read this thread. Just to give you a little history on my little girl Lucy - she is now 8 and was diagnosed with Crohns disease when she was 2 (cant believe its been 6 years), as you probably know from reading on here no two presentations are the same when they are small. Lucy's symptoms started when she was about 9 months old but because IBD is so unusual in babies/toddlers it took us a year to be taken seriously and she was treated for everything from reflux, to hand, foot and mouth to constipation before we got to even see the paediatric gastroenteroligist - so its good that you have already seen one and are seeing another this week. What struck me about your post was where you said your little girl gets really agititated before she makes a poo and feels slightly better afterwards until the whole cycle starts again - thats how Lucy used to be. The only advice I would give you because it was a lesson learned for us, is to keep pushing and dont be put off by doctors not taking you seriously, you are the mom and you are living with this everyday and you know better than anybody if something isnt quite right. Keep a diary and keep taking pictures of unusual poo as it will help the GI in making a diagnosis and forming a plan. I hope you appointment goes well this week.
Polly
Thanks for your reply Polly, I'm sorry to hear that your daughter has it, I hope she is doing much better now. Did she just get worse and worse until you worked out what it was? I feel like no one is willing to admit that there could be something going on, I keep hearing 'it might be something that she just grows out of', which I really hope happens! She's had 2 days of mucusy diahorrea since seeing the paediatrician on friday, so if it continues I'll be back off the to gp
01-29-2017, 09:44 PM   #21
xmdmom
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@Emilymc13 Please check to see they are comparing the calprotectin results with normals for age. I'm pretty sure that babies can have much higher levels than children or adults.

reference https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4351193/
01-30-2017, 02:47 AM   #22
Emilymc13
 
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@Emilymc13 Please check to see they are comparing the calprotectin results with normals for age. I'm pretty sure that babies can have much higher levels than children or adults.

reference https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4351193/
Ah ha, I'm learning something new every day! Thanks xmdmum, maybe it's not as bad after all
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