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.
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.
