Not sure what to do

[Anonymous]

Hi everyone. I’m kind of in limbo here and wanted to get some advise. Noah is 21 months and is only 20 lbs 6 oz. He hasnt gained any weight in 7 months or so. The feeding team dismissed us when he was around 14 months saying he had age appropriate feeding skills. For those of you who know our story, you’ll know why I had to laugh when they said that. Anyway, we continued to do everything under the sun to get some calories into him. After 4 or so months of him not gaining any weight, I called the GI doc again. We went in and he immediately referred us to the feeding Psychologist again. We went to one appt with her and didnt go back. It seemed to be a complete waste of time. So here we are again, many more months have past and we still arent getting any weight on him. Here’s an example of a typical to good day for eating:

10 – 12 oz of 30 cal pedisure, juice w/formula or yogart juice, carnation instant breakfast etc. (4 oz are sleep fed).

breakfast – 4 or 5 oz of pureed fruid fortified w/ formula – or an egg w/ lots of butter

lunch – 5oz of whatever i can get into him fortified w/ butter or formula. I often offer him cheese puffs, chocolate, peanut butter or whatever kind of fattening food I have on hand.

snack – a cookie or yogart if I’m lucky

dinner – little bits of what we are eating (he only self feeds a little) and then I puree a toddler meal and sometimes get 5 oz of that in him and its fortified with butter.

We still puree some foods because he mostly lets me feed him and its easier to shovel the food in while he’s distracted and it requires little chewing.

I know he should be getting around 1300 or 1400 calories per day and I know he isnt taking in that much. BUT he is still eating (although its done through sleep feeds and distraction) and he isnt gaining an oz. I told his doc about my concerns at his last well visit and asked if we could do a metabolic work up, but he said they already did standard blood work when he was 9 months old. I’m not sure if they did thorough metabolic testing or not. But he didnt think anything else was necessary.

So now I’m not sure what to do. Should I try to get into a nutritionist and get some more pointers on what to feed him. Even though I add as much fat and calories to what he is already eating. Should I try the GI again or just go back to the feeding Psychiatrist and give her a real try? The feeding team I think is useless since they have dismissed us twice before. Plus the advise they gave us required us to drop all sleep feeds at the time (which would have been detrimental to his weight at that time).

I’m open for all suggestions.

lisaann2007-1-5 17:19:28

[Anonymous]

I would really push to see a nutritionist! Yes he is eating but I highly doubt that it is enough for him….I mean he hasn’t gained weight so I assume that should be an issue shouldn’t it? Our nutritionist actually wants us to call her at least once a week to check in and Isaac is not as bad off as Noah. And for a blood workup to have been done so long ago seems a little outdated since it was a year ago to me. Is your regular ped very helpful in this? I have found that if I don’t start out with a good ped then I never got a good specialist. Maybe you could see the GI in cincy and try to get him to talk to your Columbus GI?

I guess I would also not want to drop sleep feeds b/c they are a big part of his diet…….I don’t always follow what they tell me to do b/c my first priority is for him to eat and really they should understand that.

My heart really goes out to you and Noah I will be praying for both of you!

[Anonymous]

Thanks Sarah. I think I’m going to schedule an appt with his Ped and talk to him about my concerns and then see what he thinks. If he sends me back through the same channels then I think I will drive down to Cincy again and see what the doc there thinks. I just dont feel the like people here in Columbus have really been of any help. Maybe now that he is FTT they will get more involved.

I hope Isaac is doing better.

[Anonymous]

Sorry, no advice but I wanted to tell you that I really feel for you. I hope and pray you find a therapist and / or doctor that will take your concerns seriously and help Noah once and for all.

[Anonymous]

Hi Lisa

First of all, the ped should be looking at his height. If he has not gained any weight in 7 momnths, how has his height been?? Some babies are able to stay on their growth curve without gaining….

Matthew is about 24pounds i think – he has not gained in 2 months but we are cutting his tube feedings to see if he will get hungry. From what you have written, it really does not seem that Noah is eating enough – what Matthew has to eat in order to maintain his weight, and not gain is the following:

Breakast – 7-8ounces of 30cacl formula

11am – 4 or 5 ounces of 30cacl formula + 4 ounces puree (although i do not fortify his purees)

3pm – same as above

7pm – usually 5 ounces or maybe 6 of formula + 3 ounces of puree

So, he needs to eat around 950cal i believe to maintain his weight. It seems like Noah is eating prob something similar in terms of calories.

I would go to a nutritionist because they can help with the diet and also calculate the calories (for us it is easy because everything right now is jarred, so i know exactly the calories). The periactin i believe makes Matthew thirsty and we have seen a huge change since we stopped tube feeding at night, while he was asleep.

I am sorry you are still having issues – from what you say, i am not sure that there is anything metabolic going on but for peace of mind, you should prob push for retesting… it seems like teh calories he is taking are just not enough.

HUGS – sorry nobody has been able to help you guys.

[Anonymous]

Thais

I actually just measured Noah’s height the other day, and was shocked to see that he only grew a 1/2 inch in 5 months. He had been around 25% to 35% on the growth charts since he was an infant. However, now he has fallen to 4%. I made a call to my Ped today to schedule an appt so we can talk about this. I am extremely concerened that he hasnt grown in weight or height. I dont know if its a metabolic problem or if he isnt getting enough calories or nutrients to grow properly. And youre right, he probably does get about the same amount of calories that matthew is getting. It’s really hard to get that amount in him and I have to fortify EVERYTHING.

My appt is set for this Saturday so I will keep you posted how it goes with the Ped.

Thanks!

lisaann2007-1-8 21:21:15

[Anonymous]

Good luck Lisa. Keep us posted.

[Anonymous]

Dear Lisa: We are in the same boat with Carson. He is 18 months and weighs 19.3 pounds. We see the spec every month. We didn’t gain again but grew 1/8 of an inch last time.

Our spec has been talking about tube feeding (tube down nose). I have done some reading about it and think it may cause even more problems. If we tube feed these little ones, they get fairly dependent on it and REALLY don’t want to eat real food. I can’t see where that would be very beneficial – except for the immediate relief of getting a few pounds on them. But, then are we back in the same rut when the tube is out??

We do see a nutritionist once a month when we see our specialist but she isn’t much help – maybe I would call her my cheerleader! i just don’t think there is an easy answer for these little guys that don’t want to eat.

I give Carson (MSPI) rice drink with Neocate added at 24 cal per ounce. Is your pediasure 30 calories per ounce? If so, that is really good! I think you just have to keep doing what you are doing and pursue any doctors that you can to get their opinions. Carson looks good – skin tone and eyes, but he is really skinny (arms and legs). Is that similar to Noah? Oh, we tried duo-cal on Carson and it was just too much for his body I think. He really had a hard time at night when he had duo-cal. Maybe too much fat??

If we get any good suggestions, I will pass them on to you right away. I have tried a lot of foods on Carson, but it usually comes down to: eggs, tiny bites of bread/butter, my meatloaf, noodles (mashed), soft cookie once in a while, applesauce when he isn’t gagging, sweet potatoes, neocate BUT mostly rice cereal (his favorite).

Good luck to you. I pray that in a few years we will look back on this and think it wasn’t so terrible, but right now, it is! Keep the spoon out and good luck!

TnBEich2007-1-26 12:6:34

[Anonymous]

Hey you guys. Can I get in on this discussion? Quinn is my baby girl. She is just about 13 months old and still weighs 18 pounds. She is still 29 inches long and used to eat like a pig up until two weeks ago. She has not grown in height since nine months and she never seems to gain more than 1 pound in three months. I never thought that a food aversion would enter my mouth with this kid because up until two weeks ago, Quinn had an insatiable appetite. I even posted a topic or two about it… However, she’s never been able to gain a good amount of weight no matter how much she eats. And now, just like Carson, Quinn only likes her rice cereal. Her GI wants her on pediasure but Quinn will not drink it. She will not drink anything but apple juice and nutramigen. She will not eat anything except rice cereal. Lately, we’ve been dealing with her putting her food in her mouth and then just chewing on it a bit and spitting it out. I’m lucky to get four bites in her like this. I thought that maybe she just doesn’t like mama’s cooking anymore, but then she started spitting out her favorite snack too, Kix. I don’t know what to think about this. I’m scared that perhaps she may lose some weight.

I’m scared since a g-tube has already been brought up. She’s gained and lost and now we are dealing with this. Her main food intake is her formula and that’s all she seems to want. But this can’t be her only source of nutrition, can it? Is this all she needs at this point? Can she survive off of formula alone? Will I start seeing a weight loss if all she’s taking in is formula? Or will this be a false sense of a weight gain? I’ve been contemplating on whether or not to take her in to see the ped, but I don’t think he would do anything about it if there isn’t a weight loss. Do you know what I’m saying?

-Sarah

[Anonymous]

Sarah

I am sorry to hear that you are starting to have issues — did you do any of the tests yet?? Were tehy scheduled for this week?

As for your question – a lot of tube fed babies thrive on formula, given that this is what you usually put down the tube. As long as they are taking enough calories and therefore volume, it should be OK. Matthew thrives on baby formula with minimal solids. We tried to switch to a toddler formula and his stomach does nto handle it well yet. A lot of babies with feeding aversions actually tend to have a liquid diet — so they really heavily on the bottle/drinking to thrive. Hopefully with some therapy, those habits can be broken.

[Anonymous]

Sarah: I wondered if Quinn is doing better? Was it a bug and she is now over it or was it the beginning of a food aversion? It is unbelievable how difficult it can be to get enough calories into these little ones. Carson is still fighting every bite. Lost 2 months ago but held his weight when we were in at our last month’s appointment. I sleep feed him Neocate on his really bad days and I think that is keeping his weight at a hold. Let me know how Quinn is!

[Anonymous]

TnBEich wrote: Sarah: I wondered if Quinn is doing better? Was it a bug and she is now over it or was it the beginning of a food aversion? It is unbelievable how difficult it can be to get enough calories into these little ones. Carson is still fighting every bite. Lost 2 months ago but held his weight when we were in at our last month’s appointment. I sleep feed him Neocate on his really bad days and I think that is keeping his weight at a hold. Let me know how Quinn is!

jw if Carson is tolerating solids…and how long did the doc say he would need neocate? i havent seen our GI since my son was 4 months cause we havent had a need to…so am wondering how long i should stick with the neocate….

[Anonymous]

Natalia: Carson is on Neocate for the calories. I mix it 24 calories per ounce and mix it with Rice Dream which is 13 calories per ounce. Carson tolerates MSPI foods but does still vomit prob once a day. He gags and up it comes so easily. I don’t know what to say about how long Trace will need Neocate. I not a doctor, but have been in a lot of their offices with Carson! I would think that after a year you could start to slow down the bottles of Neocate (Trace will probably do this on his own as he gets closer to a year or a year and a half) and focus more on foods and if Trace is still gaining and tolerating the foods you would be fine. You will have to give Trace *something* to drink – maybe your doc would recommend Rice Dream or to continue the Neocate but also add juice or water. Maybe at a year you could ask your doc about trialing a different formula to see if the MSPI is gone. Wouldn’t that be so wonderful! Again, you should check with your doc.

It sounds like Trace is doing great and the picture is wonderful!

[Anonymous]

Hi Brenda-

Thanks for thinking of Quinn. We are still dealing with a food aversion. Although it seems to be better some days. She got really sick again this past weekend and the fever broke by Wed. And then she started to get a really nasty cold. Which we are still dealing with. This kid just can’t stay healthy… which i think is contributing to the food aversion. She appears to be incredibly fussy most days and she spits up her food sometimes… and when that happens, it doesn’t even appear to be digested. I don’t know if the aversion is due to texture issues… because she does eat half of her rice cereal… or if it is the sickness. She is in OT right now and is mostly fussy during the sessions. Half the time the sessions need to be cut short because of her fussiness. She drinks her bottles fine.

you know… I think i get to the point to where there’s so many problems with Quinn that I don’t know what to blame it on or what to call it. Like maybe she’s teething… or she’s just getting over a stomach bug… or she still has a lingering cold… or she was in the hospital last night… or maybe it was the test from the day before… you know… so many maybes and still no definitely’s. I’m starting to think that Quinn is just going to be a difficult kid until she starts telling us what hurts and stuff.

I took her to the doc on Friday because of her fevers and she still had not moved on the scale.. and still had not grown an inch. Quinn moved from the 17th percentile last month to the 9th percentile. The doc can’t find anything seriously wrong with her. She’s had so many tests done.. some are still pending… to figure out why she gets sick so often and why she is having such a hard time gaining weight. The problem is that the more she gets sick, the less she eats. If she continues to be sick so often, she will continue to refuse food… if she does not eat, she will never grow. Which is what we are dealing with. A g-tube is still on the tip of our tongue. And we are avoiding that at all cost. Four doctors have already mentioned it and each time my reply has been to just wait and see.

But right now we are awaiting the results from the Ph probe and sleep study. I should get the probe results on Monday or Tuesday and the sleep study won’t come for another week or two. Hopefully we will have some answers. And if we don’t… I think i’m going to cut off all testing on her… she’s had practically every test done and nothing shows anything severely abnormal. When we see a new doctor they all think there is something not right… but test after test has indicated that everything appears to be working fine. After this, I’m done and I will just have to see what path her health continues to follow. If she needs help with feeding then I will do that… but otherwise, I don’t see the point anymore in figuring out why she is so sick so often. It’s not fair to her to poke and prod her anymore. If she is sick, I will deal with the illness. But no more tests. She’s had enough and so have I.

Wow.. that turned out longer than I thought. I guess it was more like a vent!!!

-Sarah

[Anonymous]

Sarah…I just thought I might ask if you have tried any complementary medicine (eg chiro, naturo…). I’m not trying to sell you the idea or anything but am more “just interested”. It sounds like you and Quinn are just doing it so tough…I really hope something comes from these next tests. She is such a cutie…I’m with Amy from your other post…I just want to give her a big hug.

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