Hospitalization and Encopresis

[100AcreWood]

I have posted here before on my ds's problem with stool holding and constipation (encopresis). He is going to be hospitalized in the next few days for a full clean out. Having never done this before, I'm nervous. Has anyone been through this? Any advice? I have done 5 home clean outs over the last 2 months and his recent x ray shows he is still backed up with poop. The only thing I know is they are putting a tube down his nose and flushing him out with a miralax kind of solution. The hospital is a children's hospital and they said they do at least 3 of these a week. I can't believe it's that common . Anyway, they said I could be there anywhere from 24 hours to 3 days.

We're heading to Disney in October and I'm hoping we'll make progress before then. Our last trip was great but dealing with streaks in his pull ups and constantly trying to hold his BMs the entire week created stress for both of us.

 

[monica9]

Sorry your son is going through this. How old is he? I bet he will be fine and I'm sure they do this ALL the time. I'm not sure of the reason for his diagnosis, but have you tried a high fiber diet? I'm sure you've tried everything! They recommend 5 grams of fiber plus the age of the child. So a 4 year old's recommendation is 9 grams, a 6 year olds is 11 grams, etc. I try and give my 4 year old at least 15 grams per day. Have you tried wheat berries or mixing high fiber cereal into his other cereals? How about grinding up flax seeds and mixing it into his foods? Also drinking a lot of water and staying hydrated and staying away from dairy. I'm sure you've heard this all before but just in case you haven't, I had to share it.

Good luck to your son!

 

[monica9]

Also,maybe disney will be great for this! you can always ask his favorite character to talk to him about the importance of going when the feeling comes. How about letting him pick out anything in the disney store that he wants if he at least tries pushing out a little. These obstacles we face as parents will soon pass. My daughter had breath holding spells where she would turn blue and go unconscious if she fell and got hurt. She hasn't had one in a year so I believe and pray that it has passed and I will do the same for your son. I'm sure he experienced a very painful bowel movement at one point that he doesn't want to have to experience again. Good luck and oh, if you have any suggestions on how to get my daughter to not scream if a drop of water goes on her face while in the bath or pool, I'd love to hear it!

 

[Michigan]

Both of my girls have had surgery where they needed to be completely cleaned out. Because you child is young they will put the NG tube up his nose (not a pleasant procedure) and then they will fill him up with Golytely and he will go and go and go.

 

[LONES]

My DD is almost 8, and we've been dealing with Encopresis for 5 years now. We have discussed this procedure with our Pediatrician, but have been told that it's very rare to do this anymore because it can be treated at home with Miralax. DD has been on enough Miralax to blow out a horse for the last 5 years to no avail. We've been hesitant to try the NG tube cleanout because we've been told insurance won't cover any part of it. Are you having any issues with that?

I'll be very interested to see how this goes for your son. I've never known anyone who has done this. Good luck to you! I know how draining all of this can be!!

 

[LONES]

Both of my girls have had surgery where they needed to be completely cleaned out. Because you child is young they will put the NG tube up his nose (not a pleasant procedure) and then they will fill him up with Golytely and he will go and go and go.

Can I ask what kind of surgery? This has never been presented as an option for us.

 

[Michigan]

My girls both have spina bifida and had surgery for an ACE. Basically their bellybutton was revised to have a small hole in it where they insert a catheter attached to a bag of water and give themselves a high volume enema that cleans out their lower colon.

 

[khertz]

As a pediatric nurse, I can tell you that it is very common to get the kids that need NG tubes with Go Lytely until their stools are (as one Dr. writes in his orders) Rocky Mountain Spring Water clear. In the last few weeks, we have had several kids who needed this kind of clean out. How old is your child? With younger children (toddlers mostly) besides cleaning up the stools the biggest problem parents deal with is their child trying to or actually pulling the tube out and it needing to be reinserted. As nurses, we know when we get patients who need this treatment to load up the room with diapers (even for older kids sometimes) and plenty of wipes and chux pads for the bed. Because once they start to go, they GO.

Good luck with everything! It will not be a fun few days but hopefully it will give him some relief.

 

[LONES]

Has anyone had any experience with a Gastrogafin Enema? This is the latest thing that has been talked about with our Pediatrician. I believe it's a test where they give a contrast solution via enema, and then do an x-ray to look for any abnormalities. Our DD (7) has had an MRI at age 4 1/2 where they found nothing wrong mechanically. I'm not sure what this test might find that wouldn't have been found with the MRI. The one good thing is that it sounds like the contrasting fluid will act as a super enema.

Our daughter's issues started at about age 2 1/2-3, so we've been dealing with this for a long time. I'm certain in the last 5 years we've never once had a successful cleanout. Our Pediatrician seems to think that enemas are too cruel for children, and our daughter has never had one. We ended up in the ER late one night because she was writhing around in bed screaming in agony. The ER doc was completely amazed at the amount of stool inside of her. I asked about an enema, and was told that it wouldn't help because she was so clogged up, that the enema wouldn't reach far enough to do any good. At that point we were referred to a Pediatric GI specialist that ordered the MRI and an ultrasound. We were told there was nothing physically wrong with her, and that we should just keep "pushing the Miralax".

 

[100AcreWood]

As a pediatric nurse, I can tell you that it is very common to get the kids that need NG tubes with Go Lytely until their stools are (as one Dr. writes in his orders) Rocky Mountain Spring Water clear. In the last few weeks, we have had several kids who needed this kind of clean out. How old is your child? With younger children (toddlers mostly) besides cleaning up the stools the biggest problem parents deal with is their child trying to or actually pulling the tube out and it needing to be reinserted. As nurses, we know when we get patients who need this treatment to load up the room with diapers (even for older kids sometimes) and plenty of wipes and chux pads for the bed. Because once they start to go, they GO.

Good luck with everything! It will not be a fun few days but hopefully it will give him some relief.

I appreciate hearing your perspective. My ds is almost 4. We've been dealing with this over a year since he had one BM that hurt. This is our 4th ped GI. He is considered one of the best in NC and he is confident we're at the point we need to do the hospital clean out. According to him, most cases where holding has been going on this long cannot be treated with home clean outs alone. I'm nervous because I know ds will try to pull the tube out. He is going to freak out. Do you have any tips for keeping him calm? I'm bringing his pillow, blanket, favorite toys and an ipad to keep him busy. Praying this helps him. I was stunned at the amount of poop that came out of him during his 5 home clean outs so I can only imagine what this is going to be like.

 

[100AcreWood]

My DD is almost 8, and we've been dealing with Encopresis for 5 years now. We have discussed this procedure with our Pediatrician, but have been told that it's very rare to do this anymore because it can be treated at home with Miralax. DD has been on enough Miralax to blow out a horse for the last 5 years to no avail. We've been hesitant to try the NG tube cleanout because we've been told insurance won't cover any part of it. Are you having any issues with that?

I'll be very interested to see how this goes for your son. I've never known anyone who has done this. Good luck to you! I know how draining all of this can be!!

Goodness, no one said the insurance wouldn't cover it so I'm assuming it will. I'll post again to let everyone know how it goes. The ped GI told me that 25% of all kids around the world suffer from this. That is amazing.

 

[msmama]

Don't know anything about this procedure but be confident that the nurses on a pediatric floor will know that kids will try to pull out the tube and will do their best to make sure it's as secure as possible.

My son recently had surgery and we knew the IV would be the worst part. That sucker was taped on there so tightly it was hard to get off!!

Also, the personal TV in his hospital room was perfect - I think he could've had the surgery right there he was so mesmerized, lol!

Good luck!

 

[disfan07]

Goodness, no one said the insurance wouldn't cover it so I'm assuming it will. I'll post again to let everyone know how it goes. The ped GI told me that 25% of all kids around the world suffer from this. That is amazing.

Double check but most likely the GI specialists office has checked with the insurance but I would call the office to make sure. Because it is probably considered by the insurance company to be elective it might need to be pre approved depending on your insurance. We have a PPO and some things have to get pre approved, some things dont but we have to get every non emergent hospitalization preapproved (so everything that is NOT done through the ER or not done because of an outpatient procedure complication) if we don't get it pre approved, we could face a penalty fee (if they decide to cover it) or they could deny coverage all together. All 8 of my doctors are wonderful when it comes to getting things approved (they even insist on calling about MRIs even though we dont need pre approval for those).

But when it comes to insurance, we're overly paranoid about making sure things are covered. I was just hospitalied last month for 5 days for GI problems and the bill was $73,000 (luckily we were covered 100%...we long met our OOP max) but its 7 years of bills like that which makes us diligent about checking insurance coverage!

 

[100AcreWood]

After 2.5 days of being in the hospital we finally got the all clear. The experience was really scary for my ds and 2 days felt like a week but he is completely cleared out. We check in with the Dr. in two weeks. We start Miralax again tomorrow morning. Right now he is still emptying the go lytley out of his system (what a terrible name). We're also seeing a child psychologist in two weeks to talk with him and advise me on the best ways to get him through this so hopefully he stops holding. Neither of us want to go through this again. The ped nurses were overall great. They had to sedate him slightly to get the IV and ng tube in the first time. And it still took 5 nurses to hold him down. He is a little fighter. Unfortunately, on the 2nd night he sneezed and the ng tube literally flew across the room. So they had to insert it again.

 

[mom2val]

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[noahdove]

Well, my 3 year old dgs just went to a specialist at Rochester Strong Mem. Hosp. and he is to have 1 capful of miralax every hour for 4 hours everyday, and 1/2 tablet of an exlax every other day..He was full to capacity plus. The ped specialist said no enemas as they don't solve anything, and we needed to clean him out. Well, it took days to clean him out. We have been doing this since the middle of June..He does go back to be checked in September and for once in his little life, he doesn't mind pooing..it hurt him something awful so he held it. Now, he goes up and just does what he needs to do in the bathroom and calls for help. Until this point, he would bring a diaper to us and want it on to poop...I thank God we got the dr. we got and things are going great...

 

[LONES]

Thanks for the update! It sounds like things went as well as could have been expected. I have a question.... was it that horrible??? I ask because our Ped has been very reluctant to go this route. She says it's very difficult to get the drip going at the correct rate. She says too slow... and it doesn't get the job done. If they go too fast, the child can start vomiting and it's a really horrible experience. I've never been too keen on the idea... but we've been spinning our wheels for 5 years. If you'd rather PM me, that would be fine. I realize this isn't the funnest thing to talk about!

 

[100AcreWood]

I sent you a PM.

 

[Doryln]

I found this post while doing research on my 8yo dd's suggested hospital cleanout. Are any of you still out there? How are your children doing??? My 8yo has been dealing with encopresis for years.....it's so extremely sad. We've dealt with two disney trips during it as well We were there this summer, and her issues were in a good place then. The new school year has brought the issues back again........any input would be great if any of you see this thanks!!

 

[100AcreWood]

I sent you a message.