Hirschsprung's Disease, need help w/ 'constipation' issues 2 yr old

[brenda-sw]

Hi,

Sorry in advance if this is too long!  My two yr old son was born w/ Hirschsprung's Disease.  He had no ganglion cells in 1/3 of his colon and consequently lost 1/3 of his colon when he was 6 mos old.  He did really well for 15 months post surgery and then got 'sick' over the summer and we have been having problems since.  I hate saying 'constipation' because it is not typical hard, packed stool but instead more like very  very slow transit, weak peristalsis.  He does fine w/ his poop for a few days or a few weeks and then it stops and we have to enema/irrigate to keep him clean...that could last for weeks or days.  Since the summer we have had two really bad episodes where he stopped pooping for 8 weeks and a few weeks later stopped again for 5 weeks.

He is on a very high fiber diet.  I aim to give him 5 g of fiber per meal.  He does eat dairy (cheese, yogurt, cott. cheese) but has never had cow's milk.  I have tried taking dairy out and it did not seem to make a difference...but I only tried for a couple weeks. He BF exclusively for 7 mos and just weaned at 25 mos old.  He has been allergy tested (blood), tested for other things like hypothyroid and everything came back normal, no allergies.  We have tried almost every thing dietary (prune, prune juice, good oils, etc.)

he is on a high quality probiotic (klaire) and we just recently started a prebiotic.  Thinking of starting Florastor as well but everytime I am ready to try to add something he has a set back and I don't do it.  When he does not have a bm in 24 hrs we have to do enema or irrigation as he is at high risk for enterocolitis.  We started 50 mg of magnesium (2x per day) a few weeks ago which seemed to help a bit.  Also on a multi vitamin, vit D.

Will be seeing a homeopath for the first time next week.  Also reasearching chiropractic.

Anyone offer any insight, anything else we can try to get him into a better pattern of poop every day?????

Any advice is welcome and appreciated.

Thanks,

Brenda

[Koalamom]

I don't have any advice but a big hug.  My sister was born with HB and she had to have surgery like your little one.  She is now 29 and healthy and happy.

[Koalamom]

Oh but I do want to add that she can eat all the dairy she wants but it is the grains that she has to watch out for.

[brenda-sw]

THANKS!  I forgot to mention we have also been tested for celiac and came back negative, but I know he could still be sensitive.  It is so hard to think about giving up grains as I really use them to supply a lot of his fiber.  He eats great fruits but has been rebelling against his veggies lately, so those grains are imperative. 

Also forgot to mention he takes senna 2x per day and I will be doing some Genova testing as soon as I get his stool to regulate.

THANKS again!  So happy to hear your sis is doing well.

[deditus]

Well, a lot of people (kids included) have problems with high fiber diets and do better with high fat diets - fiber from fruits and vegetables is generally fine. If you choose to include dairy in your diet, I would use high fat dairy (ghee, butter, cream) instead of high protein dairy. But I would look at cutting out dairy for a month or so and see if it helps - and I mean every.last.trace of dairy. I would also cut out grains. Try some digestive enzymes, high bifidus probiotics, and keep up with magnesium.

http://www.enzymestuff.com/rtencopresis.htm

[Crafty]

When doctors remove the parts of the colon without ganglia, they remove up to where they can detect the presence of ganglia- not necessarily functioning ganglia, though, which is where your ds might still be having problems. High fiber is great, but it won't do a lot of good if he doesn't have what's needed to push it all the way through, you know? :( What do your doctors suggest?

[brenda-sw]

Pretty sure they removed all of the 'bad' colon.  The thing is for 15 months post-op he was pooping fine, actually too much.  He was pooping about every diaper change 10-12x per day...by 9 months post-op we were down to a more 'normal' 4-5x per day.  Then bam he just stops...and develops on/off enterocoltis for 8 weeks and then BAM resumes pooping 3-4x per day everyday for 6 weeks and then again BAM stops for 5 weeks and then resumes but has been very on/off since early December.  Could it be food allergy/sensitivity, a bug, constipation???  We traveled 12 hrs to have his surgery w/ the top surgeon who specializes in HD so we are pretty confident they got it all and that is ganglia are functioning.  The surgeon wants us to increase his senna...more laxative.  The gastro's we have seen have all recommended switching to Miralax, which we don;t want to do.  Tomorrow we have an upper GI.  There has been intermittent vomiting w/ each of these episodes (1-2x per week)...and some on off GERD symtoms.  All very confusing and very frustrating.  We have a Genova stool test to do and another Genova test also (urine analysis- I think).  His appetite is terrible and he is constanly loosing weight, gaining a bit back and then loosing again.  I am just beside myself w/ this.  It is very hard not knowing what to do and not getting any answers.  We live in the NYC area and have yet to find a pediatric gastro we are happy with.

Thanks again,

Brenda

[Koalamom]

I agree with what Emily said about fats and fiber. I would try more fats and I am not a fan of fiber. My parents went through all the stuff with my sis near NYC as they lived near there at the time. I will ask them what they went through, and where, etc.

[brenda-sw]

My head is spinning!  THANKS so much for taking the time to respond.  If I cut out dairy and grains do you think I should do this at the same time?  how long will it take till all traces are out of body and that I should then see results??  Also if trying to add more fat, w/out dairy...what foods...oils, avo, nuts, anything else I am missing.  We have not given our kids red meat yet and were not planning on it, we are not vegetarians but I rarely cook any meat (occasional chicken ,fish).

For some reason the thought of gluten free and/or dairy free makes me a nervous wreck.

Thanks again,

Brenda

[deditus]

Do what you can, as you can. We cut out grains first. Instead of having a sandwich on bread we have it on romaine lettuce, or wrapped in nori. Instead of pasta we use spaghetti squash. After a few weeks w/o grains, we noticed that dairy was definitely an issue so then we cut that. It is so hard to make dietary changes so I recommend doing what you can handle. We saw positive changes in no less than 2 weeks for each changes. We've tweaked our diet here and there, like cutting soy too, but dairy and grain free made the biggest difference. I like the menu planners from this site if you need a jumpstart on menu ideas:

http://allergyfreemenuplanners.com/

[Panserbjorne]

Originally Posted by deditus 

Well, a lot of people (kids included) have problems with high fiber diets and do better with high fat diets - fiber from fruits and vegetables is generally fine. If you choose to include dairy in your diet, I would use high fat dairy (ghee, butter, cream) instead of high protein dairy. But I would look at cutting out dairy for a month or so and see if it helps - and I mean every.last.trace of dairy. I would also cut out grains. Try some digestive enzymes, high bifidus probiotics, and keep up with magnesium.

http://www.enzymestuff.com/rtencopresis.htm

Originally Posted by deditus 

Do what you can, as you can. We cut out grains first. Instead of having a sandwich on bread we have it on romaine lettuce, or wrapped in nori. Instead of pasta we use spaghetti squash. After a few weeks w/o grains, we noticed that dairy was definitely an issue so then we cut that. It is so hard to make dietary changes so I recommend doing what you can handle. We saw positive changes in no less than 2 weeks for each changes. We've tweaked our diet here and there, like cutting soy too, but dairy and grain free made the biggest difference. I like the menu planners from this site if you need a jumpstart on menu ideas:

http://allergyfreemenuplanners.com/

really sound advice.

[brenda-sw]

THANKS SO MUCH to everyone!!!!!!!!!!!

brenda