- This topic has 15 replies, 1 voice, and was last updated 16 years, 1 month ago by Anonymous.
January 3, 2007 at 5:03 pm #21600AnonymousInactive
We had a GI/nutritionist appt today. I think I went into this appt clueless! I thought he had been eating enough lately and it would go by quickly! I was there for 2 hrs!!!! They said that he had lost weight and that we needed to reevaluate his feeding situation. So the nutritionist talked w/me about how his meals need to be. He needs to have 5 small meals a day spaced about 3 hours apart and 4oz of milk at the end of each meal. He is not allowed a snack item or juice for now just to be sure that he is eating his meals. He is on an even higher fat diet than before b/c he failed to gain on just a regular high fat diet. They are encouraging me to feed him cheeseburgers and milkshakes (subbed out for his milk cup) and just add a few healthy items a day. We may start pediasure depending on how slow his weight gain is. I am continuing to do the food diary every day now and I have to talk to his nutritionist 1x a week to check in and I have to call immediatly in he refuses to eat for more than 1 day in row-they said anything longer than that is serious.
Also they feel that he has a feeding aversion. They were shocked that I still feed him everything and that he wants nothing to do with feeding himself-yeah I knew it wasn’t normal but I really thought he just like how I did it 😛 . Over the next month he is to be given foods that he has to feed himself (finger foods) and if he still won’t feed himself then we are off to a feeding therapist.
If he continues over the next couple of months to refuse to eat we are going to be sent to a feeding psychologist. The dr’s feel the feeding issues are something to do with his reflux.
For his reflux they added another dose of zantac to see if we can hold off on prevacid a little longer (our insurance does not cover much of them and we just cannot do that financially right now) Oh and the dr is calling me tomorrow to give us the info on a program that will help families with insurance pay their copays so that will be a really great thing if we can get it!
The dr said at 2 years old we will do another endoscopy (throat scope) and see if it is still the same problems as before. He said at around 3 or 4 we will talk about surgery to repair his stomach valve so he will not reflux anymore.
Oh I almost forgot that we have to go back every 2 weeks for weight checks at the GI’s office then I have to call his ped and his nutritionist with his weight.
So if I didn’t feel overwhelmed before I really do now!January 3, 2007 at 5:46 pm #21603AnonymousInactive
Oh, my. You must be so stressed. I worry that Myles will only self feed four of five foods, but at least he’s doing that, and his weight is fine. I really feel for you, but it does sound like his gi/nutritionist is being proactive which is great.
I hope the plan they outlined today works for him. I know you must be so worried and letting go of feeding him will be hard for you. Good luck and please keep us posted.January 3, 2007 at 10:54 pm #21619AnonymousInactive
How much does Isaac weigh? My ds is a little older than Isaac and I also still feed him. As a matter of fact, he still eats lots of pureed foods. If left to fend for himself, he would eat next to nothing. Noah has had a feeding aversion since the day he was born. We’ve managed to avoid the tube thus far, but it hasnt been an easy road. We to have had numerous tests and have been to feeding teams, OT’s, feeding psychologist and GI’s. Unfortunately for us, it seems to have been worthless. It sounds like your feeding team is much more on top of things. No one even calls to see how Noah is doing.
We have been told to give Noah pediasure (which he doesnt like). I also fortify ALL of the pureed fruits that I give him with a full scoop of formula. I also add butter to everything that I can. I give him cookies, ice cream, chips, candy bars. At times, I cant believe that I’m giving my 21 month old these kinds of foods. But when a baby hasnt gained any weight in over 6 months, I gotta do what I gotta do. Noah only weighs 20 lbs 6 oz. I can feel his spine and his ribs.
I wish I could offer you some really good advise, but so far, I havent been able to find the “magic cure” either. Just know that your not alone in all this. Take care!January 4, 2007 at 3:51 am #21622AnonymousInactive
Sarah – it seems like the GI gave you a plan and that is great! Just a couple of thoughts: has Isaac been evaluated by EI? It may really not be a feeding aversion but a fine motor or OT issue… so you may want to explore those options? I have a friend whose baby who only eat puree and not feed herself and her mom thought she was fine and when they evaluated her they found that she had OT issues (sensory, did not like touching food etc) and fine motor (just the whole idea of feeding herself, some incoordination etc). Although strictly speaking, a feeding aversion is just the failure to gain weight (this is the broader definition that everyone uses). I would go ahead and call EI – which state are you in?? Makes a big difference but maybe have a full eval of him… why wait?? The therapies for feeding are usually pretty much fun for them and they wilkl have him play with food etc.
The endo can be helpful – we know that Matthew still has issues and we know that he still has esophagitis on the meds. That gives the feeding team info on the reflux and we are going to be treating it with more motility meds soon (at the feeding clinic). Some doctors are PRO surgery, other doctors are not. It is strange that your GI is talking about surgery in a couple of years as a possibility?? Anyway, it is not now…
Lisa – have not heard from you in a while. I am sorry that Noah is still having so many issues and i am sorry to hear about his weight gain. You must be so tired and i feel for you. There are other things you can give instead of pediasure…. have you tried the other formulas like nutren, peptamen Jr, E28 (some of these are elemental but some babies like the taste)… also some moms used somethig called carnation instant breakfast added to milk… others use the resource products (i think there is an 8ounce juice that has 240 cal or something like that). Just ideas…
HUGS to you bothJanuary 4, 2007 at 8:25 am #21627hellbenntKeymaster
I have a thought too: fight the insurance! from ‘groupie intro’ in the introduce yourself forum there’s a link called ‘Going to the Top!’ it’s found towards the bottom of the groupie intro post
there’s lots of success stories, examples of letters, & exact things you can do/try
HTHJanuary 4, 2007 at 9:26 am #21630AnonymousInactive
Sarah, I’m glad to hear that your GI is on top of things and gave you a detailed plan of how to move forward. We’re in a similiar boat with the weight gain issue. I’m actually impressed that your kids will let you spoon feed them still. I swear that Hailey screams if I try to do anything for her these days. If she’s going to eat then she wants to do it herself and gets so mad if you try to help her. So we had to stop purees a while ago.
I know that your GI said that if he doesn’t eat over the next few months they’ll send him for feeding therapy, but I’d really suggest starting now rather than later. Our experience with feeding therapy was quite positive- It got Hailey to self feed, though not enough to sustain herself and gain weight, but that’s another issue. Like Thais said, there are therapists through EI, and there are also lots of clinics I hear in the US.
I personally prefer a feeding team to just a feeding psychologist, because I don’t think that the feeding problem is purely a mental or interactional issue- it’s often much more global- sensory, motor, oral-motor, developmental, fear etc. I took Hailey to see both a feeding psychiatrist, and a feeding psychologist and they both took a blame the mother approach and didn’t address the real issues at hand. If you want a psychologist, I tend to prefer a feeding team that has a feeding psychologist on it, but that’s just been my personal experience.
Did you by any chance keep any of the food diaries that you compiled? If so, and you wouldn’t mind, it would really help put things in perspective for me if you could post a day or two when you thought he was feeding well. I’m off to see the GI for the first time in almost a year to address these issues with Hailey. I’m so caught up in her eating, that I’ve honestly forgotten what’s normal. When I see other kids eat, she doesn’t even have a fraction of what they eat, and she’s SO SO SO fussy it’s unreal. But maybe compared to other kids with the same issues she’s more on par.
Anyhow, I hope you see some improvements. Hang in there. It is really hard.
s&h’s mum2007-1-4 11:34:26January 4, 2007 at 10:21 am #21639AnonymousInactive
i just lost an entire post…so i will just summarize.
i agree with lori that starting feeding therapy now would be a good idea. the therapist may be able to identify a problem that would not be apparent to even you, like a chewing issue (he gets too tired and then stops eating) or swallowing. this way you can deal with anything before it becomes an issue and do so with a hands-on rather than a “theoretical” approach based on the diaries and weight checks.
for us, feeding therapy was undertaken on my request. i was sick of feeding babyfood at 13 months and being barfed on, to boot. our gi wanted to wait, but i am glad we didn’t. we had worked through our issues by the time we would have started therapy.
also, about the milkshakes? hannah would never take more than a sip or too, i think they were too thick. i give her melted ice cream “ice cream milk,” using one with a lot of calcium and mix a probiotic in. does the trick…January 4, 2007 at 3:20 pm #21669AnonymousInactive
Lisa- I am not sure exactly what he weighs in pounds but it was 10 kilograms. We have had a problem with weight loss recently along with non eating for sometimes 5 days in a row now. I too am shocked at what I feed Isaac lol. I have had a few comments in the last month from strangers about how a “toddler” shouldn’t be eating ice cream…..now I just have to laugh b/c little do they know how it really is for Isaac. Undoubtedly Noah seems to be at a worse point than Isaac and I really hope that they find something that helps soon. We also got the comment about feeling his spine and ribs at the dr b/c Isaac is tall and thin.
Thais-We went to EI a long time ago and they were concerned then about his eating habbits or lack of lol. I think I will talk to the regular ped and see what he thinks b/c I am really leaning toward feeding therapy right now. I guess I feel like if nothing else is working why wouldn’t I try it? I did ask what would happen to Isaac in the future with his reflux and that is how the surgery years away came up…..this ped gi is very much against surgery and really I don’t think I would push for it at all right now-I would hate to put him through it. Oh and we are in Ohio.
Lori-Isaac will ONLY eat if I feed him. I knew that was odd but I just thought he was just being stubborn. I actually don’t have the food diaries here but I can give you what I thought was a normal lol
1/8 cup cheerios, 18oz milk, 3 cubes of cheese, 2-3 spoonfuls of veggies, fruit snacks, 1/4 of a gerber grads soup. I felt like this was not bad at all especially when everything is smothered in butter. Does that sound like Hailey’s meals?
Becky-Oddly enough Isaac loves a milkshake. You know I didn’t even think about the feeding therapy dealing with more than theoretical and really I think that is what he needs.January 4, 2007 at 5:25 pm #21682AnonymousInactive
Sarah, Hailey doesn’t even eat half of that in a day. I’ll post back later with what she ate today.January 4, 2007 at 6:13 pm #21688AnonymousInactive
Where are you from in Ohio? We live right outside of Columbus. And who are your docs? They sound better than the ones I’ve seen.January 4, 2007 at 10:02 pm #21704AnonymousInactive
Lisa-We are near Cincinnati. Our GI is Dr Rudolph and our Nutritionist is Anne Rooney. I really do feel fortunate b/c I feel really confidant that they are both excellent caregivers!
Lori-I really felt like that was “normal” but it didn’t help him gain any weight so I don’t know what to think. The 5 meals a day didn’t seem to do anything to his apetite or lack of!January 5, 2007 at 12:12 pm #21735AnonymousInactive
Sarah – I went to Columbus Childrens Hospital and did not like the GI doc we saw. All he did for us was an upper GI and an esoph scope. I insisted that we do a motility scan and a head MRI, but he didnt think it was necessary. He kept dismissing us and sent us to a Ped feeding psychologist. I got fed up and referred myself to Cincinnati Childrens Hosp. We met there with Dr Bucavolus. Immediately he wanted to do a motility study and a head MRI. He also wanted us to really consider a g-tube so we could take the pressure off of us having to force Noah to eat. We decided against the tube at that point, but we did do the other tests that he recommended. He was the first doc that really took Noah’s eating issues seriously. EVERYONE else pawned us off or didnt take it seriously. And as I have mentioned, no one has called us in many many months to see how he is progressing with his eating or with his weight. I am thinking of taking another drive back down to Cincy to see Dr. Bucavalus again and to get his recommendations. Its a 1.5 hour drive though, so its not something I can do on a regular basis.
I am glad that you found a great group of people to work with. It really can make all of difference in the world.January 5, 2007 at 1:06 pm #21740AnonymousInactive
Lisa-Cincinnati is supposed to have some of the best GI in the US but it really disappoints me that Columbus doesn’t do more for Noah. It seems crazy to me that they wouldn’t do any other tests even though you were requesting them. Don’t they seem concerned at his lack of interest in eating, FTT or his low weight. Oh and before I forget I don’t reccomend the allergist from Cincinnati children’s b/c they tried to tell me that allergy testing at 18 months is completely accurate-all of his other specialist said this was very untrue. Believe it or not we drive 45 mins to get to cincy already and I cannot imagine having to drive 2x that!January 8, 2007 at 11:01 am #21922AnonymousInactive
There is another mom i know that lives in Cincinnati. She is seeing a wonderful speech pathologist that works specifically on feeding. She is really well known. Let me know if you want me to ask her who it is etc or you can PM me and i will let you know who she is. I understand that EI is not that great over there ebcause you do not get that many sessions but this mom knows it all about different programs and she is so nice.
Lisa – maybe try and ask for a recommendation in the other board??? It is unbelievablet that nobody is doing tests etc that you requested.January 8, 2007 at 11:02 am #21923AnonymousInactive
Sarah I’m sorry to hear Isaac is having these issues but agree with everyone
that it’s really good that your GI is so on top of things. Question though –
hadn’t they thought Isaac had a milk allergy and wanted to try dairy free?
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