Mothering Forum banner
1 - 3 of 3 Posts

·
Registered
Joined
·
372 Posts
Discussion Starter · #1 ·
I need some help thinking through my son's FTT issues and help dealing with doctors! Ugh! I am sure we all need strength for the latter.

My 19 month old ds has Down syndrome and Hirschsprung's disease (intestinal disease required surgery at 11 weeks to remove part of his colon). When he was 6 months, he stopped growing and then started rapidly losing weight. After many tests and hospitals admissions, it turns out that they did not get out all of the colon they needed to and he needed to have the operation done again. He was on TPN during this time for about 5 months and he regained what he lost and got back on his growth chart.

In January, his PICC line got clogged and so the surgeon decided to take it out and see how he does. He's lost over three pounds since January and right now is not doing well. We need to give him some sort of extra nutrition. We are just deciding on what is best. He eats well by mouth and breastfeeds currently.

A few weeks ago, we found out that he was completely backed up with stool. We have been doing what we can (acupuncture, herbs, homeopathy and enemas) but he is still backed up.

The surgeon wants to put in a Gtube. She doesn't think a PICC and TPN is a long term solution but the Gtube can be. A few of his other doctors agree.

Some of his alternative medicine doctors (who are also MDs) and I think that a Gtube is silly if he isn't pooping well. We will just end up causing more problems. The surgeon and other doctors have some turf issues and don't want to be told what to do by me or an alternative medicine doctor even though they are MDs. (Ugh!)

My issue is that we need to find out why his intestines are not working well. I agree that he needs nutrition now but I don't think going through surgery to put in a Gtube is at all viable at this time - he is just too weak to heal nicely from it. I am perfectly fine putting in a PICC line and getting TPN for a month or so until we sort out why his intestines are not working. But maybe that is not the right solution.

Whatever the right solution is, I need to be able to get my points across to these doctors so that they understand. It seems like they need to think of things themselves, have me disagree and argue with them but acquiesce nicely as this has been our relationship in the past. They get thrown when I want testing or interventions since I have always fought them on these in the past.

Sorry this is so long...thanks for all input.
 

·
Registered
Joined
·
3,387 Posts
I'd totally fix the poop issue first and see if anything improves. Can they get him inpatient for a few days for what we call a "colon blow''? If the stool is further up than the decending colon (and his anatomy is different, so I don't know how that goes for him), the retrograde enemas (coming from the bottom up) don't clear out the entire colon.

We had to go in for a complete clean out a few weeks ago. First they put Linden on IV dextrose, then gave him mega doses of laxitives (miralax and lactulose). He still didn't poop till we did a milk and molasses cone enema (I will never eat ginger snaps again. 'nuff said). It took an extra day for him to start pooping after that enema (and it was a high volume enema too). But once he got it all out, he has been pooping some on his own (he's been enema dependent for a while now).

We were told that sometimes getting things worked out on the bottom end (no pun intended!) can make the whole system work better over all. If that works well for him, there is a fairly minor proceedure called a cecostomy where they make a stoma for antegrade enemas (go from the beginning of the colon all the way through) that can keep him cleaned out if he can't keep himself going. But some kids get cleaned out and can keep it up for the most part after that.

It's totally worth fixing what you know is a problem and seeing what happens I think.
 

·
Registered
Joined
·
885 Posts
it doesnt really make sense to put a gtube in unless hes pooping. no matter how food goes in, it all goes out the same way... TPN isnt a long term solution but before they thing about the gtube, they need to fix his bowels first. ((hugs))
 
1 - 3 of 3 Posts
This is an older thread, you may not receive a response, and could be reviving an old thread. Please consider creating a new thread.
Top