Baby with Crohn's breastfeeding advice

[KKKK74]

Hi

We suspect my 12 month old may have IBD - we don't know if it it crohn's or not yet. I am completely new to IBD and know very little about it.

She has been weaned on the GAPS diet (I have a 4 year ASD son). I am not eating a particularly pure diet I am about 80% gluten / dairy free but not completely. Her diet is very pure - GAPS stage 1 at the moment.

In relation to the IBD how much damage can be done to her by my food intake and breastfeeding ?

I know if they are intolerant to something like gluten/dairy it can be passed on (she is). But I'm now thinking specifically around hurting the gut in relation to IBD.

Also if there is any one bit of information you wished you'd known when your child was a baby - pass it on please !!

Thanks

 

[crohnsinct]

Welcome to the forum. I am so sorry you have to be here and especially with such a little one. I don't have any advice as I am relatively new myself and my daughter was 12 at dx. There are a few parents of little ones here who may be along shortly to help you but also the rest of the parents are a great resource for bouncing ideas off of, advice and just a compassionate shoulder when you need one.

 

[Farmwife]

Oh, I'm so sorry to hear this. My beautiful farm girl is Grace.
She's 3 1/2 now but her symptoms started at 6 months old.

Let me ask a few questions if I could. Has she seen any Doctor about this?
If so what test were done?
What are her symptoms?

Farmwife

 

[Farmwife]

Here is a link to a family with a son under 12 mo. of age.
For Jacksparents press here.

You can read their story and see if it sounds the same.


My girl had bad abdominal pains, spiting up a lot. She couldn't go pooh by herself till 10 mo. old, had to give suppositories. We're still going through the dx process. I hope this helps!

Farmwife

 

[KKKK74]

I think they are basing their opinion on the test results from her doctors data stool test.

Lysozyme 1130 (ref range <600)
Lactoferrin 303 (ref range <7.3)
Secretory IgA 421 (ref range 51-204)
Occult blood - present

These are the 4 major areas of concern at the moment - How do these results compare to other children here ? Is this a commonly done test with Crohn's kids ? It is a well used one in the autism world - but the crohn's world is new to us ! Otherwsie what tests should I be requesting (other than scoping which we already know about) ?

Also I'm just curious if other crohn's babies were showing signs of developmental delay? Our baby if definitely delayed physically - not severely but it is there - more than just a late developer as well.

Thanks for any help with this. It is very much appreciated.

 

[KKKK74]

Also should add - she doesn't seem to be in 'pain' but she can be slightly more fussy than some babies.

Also she was GAPS weaned so that probably masked some of the severity of her condition.

 

[dannysmom]

Hi & welcome. I do not know much about diagnostic testing for babies ... but can relate to your feeling that your daughter was your healthy child. Danny was our healthy child too. Danny has had the last 3 tests you listed ... just not the Lysozyme. Other blood tests commonly done for IBD include ESR & CRP. Some doctors may also do antibody tests like ASCA & ANCA. As you already know ... scopes/biopsies are done. Has any food allergy testing been done?

 

[Farmwife]

Well I am so glad she doesn't feel to much pain.
IF she does have IBD you'll find from here that every one is different.
My girl now is ill again, but doesn't have blood work to show it yet.
Doctors want every thing to fit and sometimes with IBD that's not going to happen.
As far as her levels I'm not sure yet. I know other's will be by soon to help with that.
Is she on any meds yet? What has your Doctor said? Is he a GI? Is she growing fine, as in weight?
I know my Grace is behind in growth. I lot of the children are on here.
It took 8 months for her to put on 6 pounds that she lost during her last flare.:yfaint:
However, mentally she grow just fine.
Although sometimes I wonder about her when she gets up in the morning
and straight away puts on her play crown on and says
"good morning Queen Mommy" and I HAVE to say "good morning Princess Grace":lol2:

Farmwife

 

[KKKK74]

Food allergy wise we only used NAETS so far - but she is gluten / dairy / egg intolerant - however I have not stopped eating them 100% - maybe 80% only - and I'm breastfeeding.

She is on no meds yet. Our doctor is a nutritional doctor who specializes in autism and allergies - so knows a lot although IBD is not a specific specialism. But our doctor is in another country to us - so not ideal !!

We think she is delayed in growth but not yet measuring it. In every way she is like a 7 months old (but she is 12 months) - if she was 7 months she would be normal - but she is 12 months !!

 

[crohnsinct]

I am new and no expert but I would guess that those test results would point towards inflammation and make a GI doc look further. Our doc also uses the CRP and Sed Rate blood tests to test for inflammation. I also think growth delay is pretty typical (although not an always kinda thing) here due to their inflammation interfering with their absorption of nutrients. Have you had her vitamin levels checked? My daughter didn't really ever have pain. Just severe diarhea and blood. So it is possible that even without pain she still has an IBD. I think it is fantastic you have a nutritional doc, I wish I could find a good one around here but I think you also need a good ped GI at this point. Good luck and keep us posted!

 

[Farmwife]

I think crohnsict is right. A pead. GI would be the good way to go also. Your girl might not be in pain BUT their could be damage going on inside her that you know nothing about! A lot of parents here have been shocked to find out that their kid's bodies have been having trouble without any signs.

Katie

 

[KKKK74]

Yes and what worries me is she is GAPS weaned so has had such a pure diet - in 12 months she has had lentils 3 times, millet twice, brown rice twice, amaranth twice, quinoa twice and 3 portions of gluten wheat. Those are her only grains in a year we started introducing them when she was 10 months and stopped before she was 11 months - and tiny portions, a baby's fist full only each time and pre-soaked for 12 hours as well - and cooked in stock !

 

[crohnsinct]

Stop the presses!!! Did farmwife just say I was right?! I want this thread saved forever...maybe even a sticky so I can access it daily to remind myself of this feeling.

KKKK: I know ped GI's are hard to find in some parts of the world but if it helps at all my daughter has been trying to travel abroad for a while now and Singapore is one of the few countries her doc will let her travel to because he says they are pretty advanced when it comes to pediatric GI issues. Good Luck!

 

[Farmwife]

That's great about the diet. Thanks important!
However, a great diet some times will not stop possible IBD from causing damage.
A good pead. GI will be able to work with you and let you know for sure what's happing to her internally.

Farmwife

 

[DustyKat]

Hi KKKK74 and :welcome:

I am so very sorry to hear about your little girl...:hug:

My children were much older than your little one when diagnosed so I am not much help when it comes to babies. You have already been fab advice so I will just weigh in saying that I also agree in going the next step and seeing a paediatric gastroenterologist so that you know exactly where you stand with your baby and the issues she is having. The tests commonly used to diagnose have already discussed with scoping and the resultant biopsy results being the gold standard.

As has been said, this is a highly individual disease in all it's aspects, whether it be type, location, symptoms, diet and response to treatment. It is so hard when confronting this disease as a parent not to feel guilty that you have somehow been responsible your child's plight and to feel that way is normal and natural. In view of the diet you have been following I don't think that anything you have done would have made things worse but in my mind may have in fact assisted in keeping things in check to a certain degree.

For some children failure to grow/develop is their only symptom and when that persists then IBD should definitely be ruled in or out. This is due to chronic inflammation and the effect it has on the bodies ability to absorb nutrients and/or the stress that is placed on a growing body in trying to keep that inflammation under control.

Good luck hun and keep us posted on how you are all doing.

Dusty. xxx

 

[kimmidwife]

Hi kkk74
I wanted to tell you I have a 14 year old with crohns but we also suspect our youngest may have it. She has had bowel issues from the time she was born our gi keeps saying he doesn't think it's crohns but did not want to pursue it further since he knew we were moving. We plan to get her in with a doctor in our new area we are living in. However my point to this my youngest is turning four now. We started suspecting crohns when she was 2.5 I have kept on breast feeding her because breast milk is good for the intestines. In a way I am giving her enteral nutrition. I think it has really helped her from getting more severe symptoms. Her symptoms are severe constipation on and off, bloody stools, and stomach aches. We control the constipation with miralax she still has blood on and off and stomach aches but not severe symptoms like my other daughter. I would highly encourage you to keep nursing! I never thought I would be one of those people nursing a four year old but if it helps her I will continue (although I may draw the line at age five but then maybe I can pump we will see)

 

[kimmidwife]

:ybatty:Hi kkk74
I wanted to tell you I have a 14 year old with crohns but we also suspect our youngest may have it. She has had bowel issues from the time she was born our gi keeps saying he doesn't think it's crohns but did not want to pursue it further since he knew we were moving. We plan to get her in with a doctor in our new area we are living in. However my point to this my youngest is turning four now. We started suspecting crohns when she was 2.5 I have kept on breast feeding her because breast milk is good for the intestines. In a way I am giving her enteral nutrition. I think it has really helped her from getting more severe symptoms. Her symptoms are severe constipation on and off, bloody stools, and stomach aches. We control the constipation with miralax she still has blood on and off and stomach aches but not severe symptoms like my other daughter. I would highly encourage you to keep nursing! I never thought I would be one of those people nursing a four year old but if it helps her I will continue (although I may draw the line at age five but then maybe I can pump we will see)