View Full Version : New - son has ng soo g-tube - Need support!


shanshan
04-04-2006, 08:58 AM
My name is Shannon. My son Brennan will be a year tomorrow, April 5th and we also have our cosultation with the pediatric surgeon for g-tube placement tomorrow as well. Our story began when I noticed Brennan began nursing less and pulling away screaming at 10 days of age. I brought him to the docs immediately and was told he was fine, they treated me like a first time mom who knew nothing. They also offered to give him formula because maybe it was
my breast milk, I refused. I continued bringing him in mulitple times a week sometimes for weight checks and concern, his time on the breast continued to decrease until he would eat for 1-2 min max. Still they said he was fine because somehow he was putting on oz's on the scale. I began force feeding him with a syringe, he would only swallow when screaming on reflex. This is how I fed my son for about 2 months. I left school and we moved from CT to my mom's in MA and this is when his ped recognized there was a problem. He ended up in the
hospital for 3 weeks, FTT. He was put on an NG tube which was my savior at first. I was told that with trial and error, he would eat. 9 months later, I am in therapy, on antidepressants and we are heading for the g-tube which we had always wanted to avoid. Brennan was eating pureed veggies, soups, pastas, and yogurt and I thought we were on our way starting at about 6 months old, but when he got his first teeth at just before 9 months, that basically stopped. He eventually began taking some food again, but not pureed or anything off of a spoon, only pieces I could put in his mouth, cheerios, cheese, many other
things. About 1.5 months ago he began wanting to feed himself and not really take anything from me, well, he will eat 1-5 bites and he is done, the rest goes to the floor and the dogs. He drinks only water from a sippie now, used to be from a bottle but nothing else. He will try things from our cups, but won't drink much and never milk, formula or anything no matter what flavorings we try. I believe the ng tube has made things worse as he hates it, of course. I am so afraid of the g-tube surgery and maintanance, but at the same time, I hope it is the change we need to get Bren to eat. I am worried because Brennan is VERY active, he has been walking for almost 2 months and climbs everywhere, he hates sitting
still so most of his feeding is done while napping, although I am trying to get as much into him for the short time he will sit in his highchair. He is currently sick with a cold and ear infection so he is eating almost nothing again, sigh. We will begin working with an aggresive feeding specialist when he gets the g-tube, wish I would have known about her much sooner. I also wish I would have found this place too, I have been doing this basically on my own, dh works, we live with my mom who is very unsupportive..."I would just pull that tube out and give him milk" Yep mom it's that easy. Anyway, I hope I can find the support I need here.
Shannon

melba19
04-04-2006, 11:20 AM
Shannon, boy is sounds like you have had your hands full. I am glad that you were able to find a doc that would help you and make things better for your son. I was wondering is his reflux undercontroll at this point? Does he have any delays in his stomach emptying? And what meds is he on?

I have four children that have reflux with three of them requiring to have fundos done. Two of them need feeding tubes placed after the surgery. Both of my boys had ng tubes placed and hated them, they were hard to deal with and the kids hated them. They both ended up having gbuttons placed and they worked so much easier. I found them easier to take care of and keep clean and little fingers didnt try to pull them out. I was wondering what they are looking to place a straight or long tube g or a g button? If you have your choice request a button because the straight gtubes are a pain to deal with and can leak alot.

As for the surgery both of my boys did very well with it and recovered quickly. I do want to say though that there can also be problems with the gbuttons also they are not always perfect but I wouldnt change it for anything else. Now for movement what kind of pump do you have at this time? There are alot of little ones that carry their pumps in back packs and continue to do the things that normal children do. These pumps are mini pumps and are great for the little ones. My son is on a larger pump but he is also older now. My other son had his button removed after having it for threes years and now has been tube free for two years.

Finall I was wondering if they think your son may have some sensory issues which can lead to food refusal? There are alot of reflux kids that develop these issue due to pain associtated with eating. I hope that I covered enough for you but if not please feel free to ask any questions. I do wish you luck.


Melanie

Janette
04-04-2006, 12:29 PM
What a tough time of it you've had, Shannon! I'm so sorry! Like Melanie, I wonder if the reflux is under control through medication and if there is DGE. It's hard to teach a sick child who is in pain how to eat. I also wonder if there are any sensory issues involved? You may want to check out the check list sticky in the Sensory forum for more information.

Good luck with your consultation tomorrow!

shanshan
04-04-2006, 12:40 PM
Brennan is on Prevacid 7.5mg twice daily and as far as we know it is under control. He had a slight delay in emptying when tested in the hospital. I'm not sure of the plan for surgery yet, but when we met with a surgeon when in the hospital he said he would go straight to the button. I don't know if we will be seeing the same guy. Brennan definitely has aversion and probably sensory issues as well due to the tube constantly being on his face. He is very defensive of his face, but is getting somewhat better. I hope the g-tube will help with that.

If I have my hands full, then you definitely do. How do you stay sane? I am a mess dealing with this.

Janette
04-04-2006, 12:45 PM
Staying sane with a sick child is definitely a challenge, isn't it?! We've had to rely on family and sometimes on friends to help us survive. When things were at there absolutely worst (2-3 hours of broken sleep per night for weeks on end--between vomiting and crying), our church also helped out for a bit. I've had to leave my teaching position to stay home to work on all of Evan's therapies and to take him to appointments. Someone you'll manage too.

shanshan
04-04-2006, 01:07 PM
I read through the sensory checklist. Bren has some of the things listed and others are hard to answer due to his age. He has charactericstics listed in both hypo and hyper for some of them. I am beginning to get scared, I thought we were dealing with just feeding issues and some sensory from the tube, I didn't know there could be so much more...

Janette
04-04-2006, 01:43 PM
Oh, I didn't mean to scare you. It's really not as bad as it sounds. If there are just a couple of things on the checklist, I really wouldn't worry about it. It's mainly if there are quite a few things on the list that you might want to look at getting an OT involved. I've been at this GERD thing for 4 years now, and only became aware of how much the sensory issues are part of my child about a year ago. Often the sensory issues tie in with the more severe GERD cases. It's honestly not as hard or as bad as it sounds.

Samantha'sMom
04-04-2006, 02:46 PM
Have you been able to work with a feeding therapist or an OT/Speech therapist on the feeding issues? Our OT and GI doc (plus the nutritionist) really helped us a lot in getting Samantha to drink/eat. We still have issues, but she is off of the NG tube now. I'm certain that you've tried all the bells and whistles to this point, so I apologize for the non-solicited advice!

GL with your appointment! Have you gotten second opinions on the course of action?

shanshan
04-04-2006, 06:33 PM
we met with a feeding specialist for the first time last week and she said she thought going to g-tube was the best option. Unfortunately we hadn't been working with one before this, I guess I was stupid in believing the doctor when she said with trial and error he would eat. I didn't realize how bad it could get or where I could get help. The only O/T we have seen was through early intervention and she seemed to think we didn't have a problem at all saying she would come back only if I needed her for support. I look forward to working with the feeding specialist though, I have heard great things about her.

Sam's Mom
04-04-2006, 06:57 PM
A g-tube is so much easier than an nG in my opinion--especially for long term feeding. The NG can be very irritating to kids and can cause them to not want to eat. maybe after the G-tube is placed, he will want to eat on his own. A feeding specialist is a good idea. I wish you the best. If you have any ? about the g-tube feel free to Pm me.