Posted By Posting
Feb 17, 2009
jean9
more feeding therapy & gtube ?s
If my DD is associated eating with prior pain (possibly current discomfort) --how do you get then to DISassociate it?

you've mentioned 'rewards' like toys, tv, etc. for taking bites... what happens when you are somewhere without those things? the therapist we had felt that even positice reinf. could backfire on you. (ie-if Libby's praised for taking bites, she won't learn to eat 'for her own pleasure" or to satiate her hunger, but just to see us do cartwheels. The idea is that she should want to eat for herself not for us, and that if we reward her for eating well, she could decide to use not eating well as a way to 'misbehave' and control us. Is this crazy thinking with reflux child?

also its was said that because she usually refuses spoon feeding from us, we should let her have the control. If we forced utensil on her it breaks her trust and can increase her instinct to refuse as protection for whatever pain ther is/was. again--crazy?

also, how is it decided what volume would be a goal?

jessica-what do you do when jedd twists in highchair, tries to climb out? We have to strap Libby in so she can't escape. she does play with the straps at times, and plays with her food , utensils, etc. how much do you allow as part of 'exploring' food and what do you discipline as not appropriate when you're trying to keep the highchair time pleasant, not stressfull, without tension, etc....

we have had a sensory processing eval. done and although she has some sensory issues it doesn't 'impact her adaptive skills (speech, fine and gross motor)" so again she won't qualify. She has to get worse before she can get help in this NY EI system! Is there anyone out there that has gotten a g-tube that has been short-term (say one year) and not had it set them way back in terms of oral feeding, appetite, etc.??? Is this just an unrealistic dream I have to erase from my hopes? Thanks again to all!

Feb 17, 2009
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
The dissassociation is the therapy itself. KWIM....they learn over time that feeidng does hurt. That's why it's important to make sure ALL pain and medical problems are resolved first. For us, it started with tools and "naked" spoons to get him to trust the spoon again. Naked spoons are spoons with NO food on them. We would pretend there was food on them and have him eat it anyways. Sounds weird but it's a start. Then you add a tiny tiny bit of food and go from there. You have to make sure to warn the child when you add the food though, you don't want them surprised by it.

This is gonna sound really hard but... I literally did not leave my house for months during the therapy process. I would leave between feeds which was almost impossible. I have NO idea how I made it. Really. I barely had time to go to WalMart.

Even now we don't do meal feeds away from the house. We do them as infrequently as possible. Our whole LIFE revolves around Jedd's feeding and whether or not he will vomit if he gets put in the car too soon after a meal.

The portable DVD player has been a godsend lately. We are trying to venture out for meals to start some training there to get him used to it. Even then I don't like to do it because JEdd my DH and I get ansty looks form everyone. They just don't understand and to the untrained eye Jedd looks (during mealtimes) VERY spoiled during his mealtimes.

As far as him climbing out of the high chair we would put the tray as far in as it coudl go and that made it harder for him. We also kept putting him back in and telling him NO and we were more stubborn then he was so he gave u pon that antic.

ALL of the major feeding clinics use Positive reinforcement. All those places can't be wrong...KWIM We haven't had it back fire on us in the 2+ years we have been doing therapy. We originally started when he was around 16 weeks old with Private ST. Then we stopped because he was in TOO much pain. We started up again when he was 11 months old.

YES when I used to try feeds outside th ehouse in the beginning (mostly at my Mom's house, he and we were most comfortable there) I brought the positive reinforcment things with me.

The difference between what we were able to do and what YOU will have to do is we had the tube to fall back on when he would eat nothing. Or he had his night feed to suppliment a bad day. You have NO safety net at all. That is why I feel a clinci would be the best. I like my safety net (the tube) so much that I am still refusing to allow his G to be removed even though we should have already done it. I just can't let it go yet. One more Winter and DH and I will be ready.

I will tell you that doing the feeding aversion stuff with Jedd and all his therapies was THE hardest thing I have ever done in my life. I was on the brink of shear insanity some days. The emotions will run really really high. You go from great days of eating where you are on the mountain top to days where the child will refuse everything and then you are in the deepest valley. And in between you feel GREAT guilt. At least I did.

A year with a tube might be done. For us, getting the NG out and the G in was the first step to becomeing oral...

OH, are you working with a dietician somewhere along all this....ours helped greatly. I knew exactly how many clas he needed for a day to gain. That became the goal. I knew that I needed him to get X amount during the day and X amount at night.

I set goals from there. For example IF I could get him to take 2 oz I would feed him in 2 hours. We did that for a month or so then I tried to stretch his belly to 3oz every 3hours..and so forth until he started taking in 8oz in one feed sitting. And again, I could do such low amounts because we had the night feed to make up cals. We wored on liquds first then when that was going well we went to solids a few months later.

Actually it's a funny story but Jedd's oral eating all started iwth a VERY frustrated Mommy who tried to get her son to eat with a syringe. YEP you read that right. Jedd's first real drinks of his life were taken form a 1cc syringe. I literally gave him like .2cc at a time. When he built up to be able to take 30 onecc in one sitign we moved up to a 10cc syringe. To this day he will drink sooooo well from a syringe. Hope this hleps again.

From the syringes we moved to that special bottle/cup thingy. Here's a picture of it:

Photobucket

Feb 17, 2009
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
Let me try the picture again
http://i268.photobucket.com/albums/jj22/mom2jedd/Gifts%20Christmas%202008/006_19A.jpg
Feb 18, 2009
jean9
jedds mommy and anyone else...
yes we work with a dietician and the GI clinic and the feeding clinic we go to. it's been a while since i've heard them say how many cals she needs, since she refuses so much the number's never been attainable.

we weigh in at the Gi clinic monthly, but feeding clinic every 3 months... we did go to OT 1x/week fro a while, but it's an hour away and I have two other kids to worry about during that time.

which brings to my next thing... when I read of all you do for sons/daughters, it reinforces my biggest worry, that I just can't feel like I'm doing ALL that Libby may need to get this feeeding thing right. If she were my only child-would it be different? would she not be as bad as she is now?

I mean, she has a twin sister--who LOVES to eat (naturally!)-- and therefore is the 'sqeakier wheel' at mealtimes, yelling for more food---while Libby can quietly refuse for a while and then yell to get out of h.chair. Then there's my just turned 5 year old who deserves some sort of normal family mealtime eating, conversation, etc. (not to mention her occasionally/normal picky eating issues). And she has "a life:" I take her back and forth to preschool everyday which obviously affects meal/snacktimes... in terms of having to get out the door on a schedule. My DH is present for dinner (and bedtime 'snack/bottle')-but that's tough becasue we know how men want to adn also deserve to have a decent dinner after working all day... He's a wonderful DH and Daddy, but as you know--the patience runs thin... Given all this I should be the one losing weight since I often look down at my full plate once everyone else is "all done" and have lost my appetite from the stress of it all... all day...6or more x/day.

And is that too much? 3 meals with 2snacks in between and bedtime and naptime bottles? It's hard to space it 2+ hours apart since I always try to squeeze in a bottle after lunch before naptime since that's when Libby gets her 'better' feeding in --falling asleep.

So that's my guilt/fear: I'll fail (or am failing) to give her what she needs and she'll be stuck with severe feeding problems/g tube forever.

Jessica you wrote-- and I cling to it everyday--God meant for Libby to be ours, and although we're bent we haven't (can't!)be broken! THANKS for that and everything!

Feb 18, 2009
zack'smom
Zack born 09/28/07 @ 31 weeks. Dx silent reflux @ 6 mo. Now not so silent. Switched to Elecare @ 9 mo. On Prevacid 15mg 1x daily. Looking to stop the puke and gain some lbs.
Puke stopped about 24 months and he's learning to eat...very slowly.
Still on prevacid and periactin.
the guilt sucks. I work full time...my DH works full time. Luckily Z takes a bottle with no problem, but takes no solids..but he vomits often. OFTEN. It's frustrating and trying and I'm so tired and I usually smell like vanilla elecare. I cry a lot in my car...we are workign witha feeding therapist now who is making food fun...It's so hard for me to reinforce that when you're always jumping at the possibility of vomit. PUKE SUCKS! Anyway, you're not alone. I know that I could do more if I didnt work, but then we wouldn't have a house, so that's not good. We just keep plugging away and hoping that he gets toa point where he grows out of the puke and we can focus harder on a sandwich!
Feb 18, 2009
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
HUGE HUGS!!!! Guilt is such a hard thing. Remember: this it is NOT anything YOU have done. this just happens. You have NO idea how many days/night ect I spent in sobs. I kept thinking what kind of Mother can't even get her child to eat. But it's was/is nothing you or I did to have this happen.

I completely understand have multiple kids in the house and not having time to go all of the things you need to get done. I have one and have a hard time. I will tell you that for months on ends my DH would NOT feed Jedd, he just couldn't do it period. Recently he has had no choice I am working here and there at night so he HAS to do it and he has learned that he CAN do it, but Jedd's issues are more under control now than ever.

Jedd takes in 3 meals and 2 snacks he also has 3 times where he gets water only. Here is his schedule for the day. 7:00 Water and meds.

8:00 one 4 oz jar food and 4oz fortified milk

10:00 3oz of liquid yogurt

11:00 2.5oz water

12:00 one 4 oz jar food and 4.5oz fortified milk OR one 2.5oz jar meat and 5.5 oz fortified milk

1:00-3:00 naptime YIPPEEE!!!!

3:00ish 4oz water and meds

5:00 one 4oz jar food and 4.5 oz fortified milk

7:30 5.5oz fortified milk

Bath time is around 7:45 and he goes to bed at 8:30.

This is the schedule we were put on at our feeding clinic. We had to add in the water in order to be allowed to cut the tube at night. We didn't want him to become dehydrated.

You know what I just thought of, do you have any coverage in your health ins. plan for Private ST for feeding??? We did that first and then when the coverage ran out, we moved to EI. Just another thought.

You know what Jean, I think you need a break, and a tube just may be it. Now mind you a tube will not fix anything. It will aggravate GERD and will for a little bit cause more issues. Once the site heals though, you should be good to go. It can cause reflux to flare because it ever soo slightly changes the shape of the stomach.

You could do just night feeds and let her be oral during the day. But again, doing night feeds will cause he to be less hungry during the day. So it's a two edged sword.

I also would NOT let them to a G and a Fundo at the same time, that's a really bad idea.

Have you discussed a tube with the ped or GI to see what their take on it is?? They may offer suggestions as well. I most certainly would NOT do an NG trial to see how things go. That probably won't go over well at Libby's age since she has never had one in before. Alot of times this is the suggest, to NG first.

I'll tell you what our local rehab clinic and what our Ped has told me....NO child is tube fed forever. They ALL eventually eat and not only eat, but eat normally. It is just the road to getting there that is hard. Now mind you there are kids who will be tube fed forever, don't get me wrong, but those kiddos normally are medically complex or have severe motility issues.

Again, don't feel guilty, You are a fantastic Mother who is doing everything within her ability to help her child. God did mean for LIbby to be yours. He saw fit to give her to you because He knew you would be the BEST parents for her.

Check with your
doctor first!