Going to gastro on Monday - any input?

[joybell322]

Okay, we're going to the gastro doctor on Monday. Currently, Elizabeth takes 1 1/2 exLax each afternoon with intentions of emptying her bowels each evening. Unfortunately, it's not working. I'm going to be asking about a few things, but I thought maybe some of you could offer suggestions to ask her doctor. I need her to be on a schedule, but I know this is tough for almost all SB kids. If any of you have any input, I'd be grateful!

[cutie patooties mom]

When Gabi was little, we used "The Magic Bullet" suppository. It worked great until age 9 and then not at all. Now we do a cone enema every other night. This works well if we are consistent in taking Miralax. If we forget the Miralax for a day or two, then we have problems. I am seriousley considering the MACE procedure for her which cleanses from the top down. The enema only gets the bottom cleaned out. Good luck!
Bronwyn

[angel]

Hey,

I have told this story so many times on here but i don't remember where so i will post it again. My son has SBO and sacral agenesis. He has the most severe bowl problems that his doctor has ever seen. Before we moved up north my son (he was almost 2 years old) went 30 days without a bowel movment. I took him to the doctor after the 3rd day everyone acted as i was over reacting. I kept taking him to the doctor every other day until day 25 when he wouldn't move, he would lay in the bed and cry, he stopped eating and i took him to the hospital and demanded they do SOMETHING!!! For a couple of weeks before the hospital visit the doctors had us on a schedule of 3 enemas a day, 3 supository's a day, 3 ounces of mineral oil a day and 3 ounces of milk of magnesia a day. It didn't work even with all that.
On the 28th day he started having bowel movments come out of his mouth!!! They said lets see if it happens again and it did. After that i called his doctor at home (in the middle of the night) and told him if my child dies i would own his ass and the hospital that somone better get something done NOW!!!!!!!! They took him to x ray found out just how bad it was and within an hour had him in surgery to get the impaction out. It had filled his body litterally. His intestines were full his stomach and it was going up his esophogus. I am surprised he didn't die from it.
No one could tell us why or what was causing it. I took him to gastros and they said he was normal there was no gastro problem. Well there was a problem somewhere obviously. They did an MRI and found out his spinal cord had to be deththered ASAP!!! We still had impactions and he was taken to the hospital again where they told me it would have to be so severe that he stopped eating before they would do anything. We had already been down that road so it was time to find something that worked. Epsom salt was the only thing i could find and i had to give much more than the recomended dose for it to work. After it worked (and it always did) we spent the next week making him drink all the pedilite we could get down him because epsom salt will dehidrate quickly. I know it sounds bad but there was nothing else we could do and no doctors were willing to do anything.
When we moved up north and started going to shriners hospital i met his urologist (wonderful lady) and she knew why it happened (although she had never seen it to that severity you couldn't see his bones on the x ray cause he was impacted again) and she had a game plan. She put him on miralax (sp) to get out the impaction and it worked without the stomach cramps and pain he had gone through so many times before. After that we played around with the dose to see what would keep him going without giving him diahrea. We also use the cone enema. Now my son is about to turn 12 years old (on halloween) and we have got it down to a schedule. He hasn't had an impaction in almost a year (that is saying a lot concidering it took us almost 10 years to get here) He takes the miralax every night at dinner. And he uses his cone enema before school every other day. We came up with this because he was having bowel accidents at school. We figured if he did the cone enema before school that he would be empty and there would be nothing to come out. It seemed logical and has worked for him.

Angel

[angel]

I forgot to mention in the above post we also are very careful with his diet. He doesn't have a weight problem so we only let him drink whole milk. The fat in the milk really helps the bowels. We limit cheese and other constipating foods. His favorite food is cheese so it sucks that he can only have it once a week. I feed him a lot of fruit as well. In his situation he needs all the help he can get and a nutritionist told us these little things we could do to help. Just wanted to pass them along.

Angel

[joybell322]

Angel, So sorry to hear about what happened to your son, but glad to hear you may have it finally resolved!

Question: the Shriners Hospital you go to - is it in Long Island Nassau County? I have been referred to them for orthopedics and urology and would love to know that someone dealing with SB likes them!

Joy

[joybell322]

Thanks! We're going to be asking about the MACE procedure. She really wants to go to school, but right now, her scedule is so off that it's impossible!

[angel]

No we are in PA so we go to the one in Erie. I do have to say that I couldn't be happier with shriner's hospital. I have SB myleo and have been through it and I wish I had gone to shriners when I was a kid. After I have seen what they have done for my son they truly are tops in my book. I think things could have turned out better for me (although they aren't bad for me) had I gone there. I would recomend any shriners hospital to ANYONE dealing with SB or any other issue they cover. They are truly the exception!!!!!!! Here they take them on outings during the summer time, we went to niagra falls on one of the trips this year. I volunteer during those outings because the outings (except the all day trips) are for the kids to get out without the parents. The parents stay with me and we have a SB support group. Since i have been there and done all of it i try to help them with whatever i can.

I will tell you another thing about them that I think is truly exceptional they don't just throw you away when your child reaches adulthood. Any adult will tell you there is a HUGE lack of care once you hit the age of 21 and if you can't find other care they will still see your child since they were a patient there during childhood.

My son's urologist has taken ME on as a patient and his orthopedic surgeon has also taken x rays and is now keeping up with me. I didn't ask them to but they asked me if i was receiving care and I told them that i hadn't seen a doctor (for SB) since i was 19 years old. They OFFERED to follow up on me since urology care is very important for us. His ortho did the same. So not only do they care about my son they have taken me on as well. I don't see them at the shriner's hospital i see them at their individual offices. What can i say i was speechless!!!!!!

Angel

[joybell322]

Wow, it's wonderful that you have found that kind of care! Thanks for letting me know. I'll definitely get her in now, especially since I do think about her future quite often!

[Barb]

If you are looking into the MACE, ask about a cecostomy as an option. We choose this procedure because it is easily reversible if something better comes along as he gets older. C has had the cecostomy almost 5 years now and i would recommend it to anyone with sb

[cutie patooties mom]

Do they use the appendix as the opening? Our doctor didnt even mention that procedure.
Bronwyn

[Barb]

No, that is the great thing about it. You use a g-tube. It is essentially nothing more than a feeding tube placed in the cecum. You flush tap water through it and sit on the toliet. Most docs don't tell people about it which is due partly to the fact that it is not well known and partly becasue they are so used to just doing the MACE. The great thing about it is that just like a feeding tube, it can be closed simply should down the line a better procedure is available. The MACE is permanent. Also, a cecostomy can be done as outpaitient by an interventional radiologist. If for no other reason than researching an alternative, you should check out the website for it. Like I said, C has had it since Kindergarten (so 5 years now). We have several friends who went this route as well. None have had any serious complications and are overall very happy with it. Is it perfect? No. But neither is the MACE and it is much less invasive.

http://cecostomy.com/

Your urologist will probably know the most about this for some odd reason.

[joybell322]

Thanks, I'm going to ask her urologist as well. Her gastro doctor said this is not a route she wants to take, because Lizzie is not impacted. She put her up to 2 exLax squares a day and if she continues to have morning accidents, she is putting her on a saline enema every other night. Liz wants to go to school with her friends very badly, so I am trying to get her scheduled enough to do that.

Do you know if the cecostomy is something that should be done only if a child is impacted? It just sounds so much better to me than 2 exLax and 3 hours of potty a night! But I could be very wrong - have been before.

[cutie patooties mom]

That seems like an awful long time. Our time is 45 minutes to an hour every other night. Is the exlax something that her body will grow dependent on and she will constantly have to up the dose? Miralax is non-dependant. At first we had to adjust the dosage because it caused problems, but so far, so good! It is working great. I am thinking about the MACE or Cystonomy(?) so that she will have more privacy than she does now with me sitting next to her while she's on the toilet, holding the enema for 5 minutes. We both hate it. She will not be able to give herself an enema, but I think she will be able to eventually self-potty with the other procedures.

[Dodger67]

"She will not be able to give herself an enema"
Why not?

[cutie patooties mom]

OK, Roger!
How is she going to hold a cone enema in for 5 minutes? It hurts my arm. She fusses the whole time. I have to start and stop the water. It is not fun!!!(Sorry for the whining!!! LOL) Will she be able to? Will she want to? I don't know yet. I'm just exploring her options. That's why I'm glad for this site so that I can find all of these important things out.
Bronwyn

[rachiebaby]

so Barb your son had a cecectomy and it works but has he ever had an accident with it and how does it stay up there?

[Barb]

Ok, lets get graphic. :sign0008: There is nothing to 'stay up there'. The button (the exact same one used for a kid with a feeding tube) is implanted in his abdomen, right under his shorts line so he can wear a bathing suit. We connect a tube into the button, and connect a feeding bag to that. The whole process looks EXACTLY like a kid with a gtube for feeding EXCEPT that this is placed in the cecum (upper part of the intestine). He sits on the toilet, we connect tube to button, bag to tube. Fill bag with around 900 ccs of tap water and let it go. Bag takes less than ten minutes to run through. The water pushes all the stool below it out the 'normal' way. The whole flushing process takes 30 minutes on average. We do this every other night. After he flushes, we disconnect the bag and tubes from his button. The button always stay in him. We can (and I have) changed the button out here at home. It really is not a big deal. He still has accidents occasionally. In that case we flush everyday for a bit and get things back under control. A lot has to do with if he eats something that just runs right through him but by and far he is bowel continent without any drugs or laxatives and all that.

This is one route to independence and continence. There are several others but this is the least invasive and most reversible option for us.

I would strongly suggest talking to another doctor abut the exlax. As mentioned, Miralax seems to be a much better choice. Miralax and Benefiber work well together for a lot of people. You absolutely CAN NOT be impacted to have the procedure done so I find that a very odd comment for your doctor to make. C was only the 4th kid in our state to have this done 5 years ago but since then they have done many many more. I had to do a lot of educating of the doctors and find one that didn't think they knew it all and was willing to listen. Thankfully one of my very good friends had this done for her son a few years prior so I knew it was the path we wanted to take. Her son was the second in their state 7 years ago. Now it is almost routine where they are.

Bronwyn-been there, done that and sooo much happier now. :happy065:

[Dodger67]

Ah I see what you mean

There are other types of enema equipment. What I use looks like a giant Foleys catheter - it has an inflatable balloon that holds it in for the few minutes.
PDF Brochure here: http://www.cardiomed.com/products/brochures/accessories/ACC_ENEMA_5.2.pdf
For me its a twice a week process that takes about an hour (enough time to catch up on some reading).

[angel]

OK, Roger!
How is she going to hold a cone enema in for 5 minutes? It hurts my arm. She fusses the whole time. I have to start and stop the water. It is not fun!!!(Sorry for the whining!!! LOL) Will she be able to? Will she want to? I don't know yet. I'm just exploring her options. That's why I'm glad for this site so that I can find all of these important things out.
Bronwyn

My son does the cone enema every other night and has done it on his own since he was 8 years old. I didn't give my son the option of if he wanted to or not. It is something he needs, something he is capable of doing on his own therefore i taught him how to do it and that was it. They are never to young to start helping with their care and doing it on thier own. When they are adults they will have to (unless you plan to do it her whole life) and what happens when you aren't able anymore. Some food for thought. It is much easier to get them started as young as possible than trying to force them to do it when they are teens or older. Not trying to be harsh at all i have just seen what happens when you don't make them do for themselves they will be 30 years old and you will still be doing their potty stuff for them when they are perfectly capable of doing it themselves. THat is no way for anyone to live.

Angel

[Dodger67]

My son does the cone enema every other night and has done it on his own since he was 8 years old. I didn't give my son the option of if he wanted to or not. It is something he needs, something he is capable of doing on his own therefore i taught him how to do it and that was it. They are never to young to start helping with their care and doing it on thier own. When they are adults they will have to (unless you plan to do it her whole life) and what happens when you aren't able anymore. Some food for thought. It is much easier to get them started as young as possible than trying to force them to do it when they are teens or older. Not trying to be harsh at all i have just seen what happens when you don't make them do for themselves they will be 30 years old and you will still be doing their potty stuff for them when they are perfectly capable of doing it themselves. THat is no way for anyone to live.

Angel

Angel
Thanks for catching the "want to":goodpost:
I totally missed it!

[joybell322]

Okay, now I'm thinking maybe I just need to go to another doctor. Lizzie's gastro doctor told me she has only done the procedure twice and they were for kids who looked 9 months pregnant they were so impacted. This doctor comes highly recommended, but now I'm getting worried. Lizzie is her only current patient with SB; maybe she's just not up to date with all this!

I think she doesn't want Liz on Miralax because that does not upset her stomach, and cruel as it may seem, I think that's how Liz knows she has to go potty. Anyway, I think I'll call a different doctor tomorrow. It's just very hard here where I live. SB is not common at all. The people around here terminate pregnancies for much less than SB, so that SB is nearly unheard of around here! It's awful!

[angel]

Some doctors only do things in severe cases like the kids with the severe impactions. With each doctor you get different experiences. My son has had those kinds of severe impactions and when everyone was screaming at me to get a colostomy for him (i just didn't want to do that without trying other things first) my doctor agreed with me and tried to conrol it another way. THat has worked well for us. You have to find a doctor you are comfortable with. Good luck

Angel

[joybell322]

Okay, Here's where we are. Lizzy is on 2 exLax squares a day (since Monday). Now Thursday, we are no better off, and she is still going a few times in the mornings. This morning we had major disaster!

Now, tonight, we begin a saline enema. I have to use an enema bag (found nothing else available) to get 200 mls of saline water into her. Then keep her stopped up for about a minute, then sit her on the potty. Any ideas on how long to leave her on? I've never done this before, so if there is an easier way or a different approach, please help!

BTW, we go to see a different gastroenterologist on November 14. I'll be bringing up the cecostomy again then, because all I've read makes me think it might be a great alternative to potty time 3 hours a night!

[Barb]

I had a nurse once tell me to do that and just put him in the bath tub with some towels to make him comfortable while we did the enema bag. I was appalled that people could look at that as a long term solution.

Joybell...you need to do what YOU are most comfortable with. SB is soooo different from one person to the next. What works well for my family, may be awful for yours. What I have learned about doctors in my short 10 years of this is that NONE of them are experts in your child. You are the only one who qualifies for that job. The best doctors are the ones who say, "You know, I didn't think of that but let me do some research and get back to you." You know you have a goldmine when they have that attitude. Our last NS was that way and it was amazing to have someone listen to me.

Childrens Hospital of Philadelphia was one of the pioneering hospitals in cecostomy so you may want to look there as it seems you are in NY. It may or may not be the best choice for Liz but at least you will have explored another option which is never a bad thing.