FTT

[Anonymous]

Hi again everyone. I havent been around much lately and I’m trying to get caught up. I’m still dealing with Noah’s eating, or lack of. He has dropped weight and is now barely 20 lbs at 17 months old. I can feel his spine and ribs when I hold him. Its so, so sad. At this point, I dont care what he eats, as long as he eats. I give him cookies and graham crackers, pudding and ice cream, cheese puffs and anything fatty. I still cannot get him to gain any weight. I am just beside myself with frustration. Can anyone give me any other ideas on how to get some weight on him?

[Anonymous]

Lisa, I’ve been thinking of you a lot lately and was just going to email you. I was wondering how Noah was doing. Hailey is also losing weight lately, quite quickly so it’s scary… she’s lost over a pound in less than a month due to lack of eating and drinking. I have no ideas that are new. We’re still trying to add oils to things that we prepare for her- the greasier the better- but she won’t let us feed her and is done after a few bites. I also let her take anything that she wants to eat regardless of how awful it is for her, which is so sad! Are you guys still sleep feeding and night feeding? Are you doing supplements like pediasure with calorie boosters? Maybe he’ll take those (though Hailey won’t). I take it the periactin hasn’t been helping! This is awful isn’t it.

[Anonymous]

Oh LIsa

i was also thinking about you the other day… i have to go but will chat later – i am sorry you are going through this. It is heartbreaking and so hard to see your child lose weight. Will be back later.

The periactin did not work? How much were you giving? HOw much is he eating? I know that in previous posts you talked about how much he ate and i always thought that with that amount he should be gaining fine….has the eating dropped? or the drinking?

[Anonymous]

OK – I am back – sorry…

Like i said – has his volume decreased or is it because he is no longer eating many purees that were high cal and is going for less fattening stuff? Do you think it is a deficiency in something or just lack of eating? I know you said crackers and stuff like that but for me, i will not gain much weight with carbohydrates…

If you are still giving him fatty things…and still nto gaining:

– record the daily calories for 3 days or so – fax them to your doc and get a nutritionist – ask them to do some absorption and metabolic tests – these were done on Matthew when he was about 5months and they should be pretty easy – also regurlar blood tests

I assume the periactin did not work? How much were you giving him? We are right now at around 4ml (so a little less than 2mg) and we started at 2.5ml… i think i see an increase in appetite but we are increasing dose slowly… some people give up to 12ml per day…

Uggh – sorry about this… if you tell us a bit more maybe we can help.

OK – I am putting this here because nobody wants to talk about NG tubes but have you discussed options with your ped? I am not saying it is a permanent solution but if what you are saying is he eats and does not gain then teh tube is great to monitor intake for a few days and see if really he cannto gain or needs more calories… i am not suggesting it is the way to go – just saying that sometimes you have to test their systems…

[Anonymous]

Oh Lori and Thais, are we ever going to get over this feeding issue? I was on P2P and read how you two are still having difficulties as well.

We used the periactin (2.5 ml 2x a day) for two weeks, then I cycled off for a week and now we are starting it again. It didnt seem to do much for his appetite. It didnt really change it one way or the other. He is still eating some pureed baby food, but also a little more mashed up table food. He will finger feed himself finger foods too. I just cant get large quantities in him. He isnt a big drinker (as usual) and we still sleep feed 2 night time bottles. I am going to estimate that he is getting around 1000 calories per day (on a good day). I dont think its enough for his activity level.

I havent even considered a NG tube because of the irritation and fear/aversion it would cause him with insertion. He even has a fit when we try to wipe his nose or suction it. But at the same time, I would like to know if adding the extra calories would help him gain, or if he may have a metabolic issue. I definitely will mention this to the doc and see if we can get a work up done.

We went to the GI a couple months back, and he gave us the periatcin and sent us back to the feeding psychologist. We saw her once and it seemed useless. Noah will eat and will try textures. He just doesnt take in enough. I dont understand how feeding therapy will help that.

How much does Matthew and Hailey weigh? How are they doing with oral feeding and how much can you get into them?

lisaann2006-9-28 12:26:45

[Anonymous]

Hey there

Matthew weighs around 23lbs – he has no issue gaining weight lately and we have found out that if he is eating some purees he gains faster even though we keep the calories around the same. As i said, we really tested him on everything the first couple of times he went on strikes adn then the def proof to us was teh NG – as soon as we put it in i think he gained 3lbs over a couple of weeks (granted a lot of it was water from dehydration) but we realised that it was a question of eating.

That amount of periactin may not be enough at all – the words of my GI were: we are going to start with 2.5ml which is a tiny tiny tiny amount so that it does not make it tired and increase it slowly…. so please call GI and ask whether you can do 5ml, 2x per day – teh only reason i am saying this is because this is what Laura is at (lauralee).

Well, the good feeding therapists SHOULD work on volume as well as textures etc. I know that the feeding clinics work on this – but i know there is no way my feeding therapist could help me wean Matthew.

I would still record everything he eats and bring it to dietician – sometimes it is just a lack of certain nutrients or vitamins or something maybe??? Although if there is an inbalance i would assume that it would come up in a blood/metabolic test – jsut to rule it out!

You know, we went to see a psych in Spain who told me i was to blame for everything – sometimes tehy are useless and unless they are helping with the child’s behavior, stop seeing her.

Does he drink water?? Have you tried putting some duocal into his water? Matthew would drink this any second!! There is also a nestle product – Additions i think it is called that is not only calories but also protein BUT you need to disolve it in hot stuff (not sure why, someone was going to check on other board).

Hang in there!

[Anonymous]

Lisa, I’m so sorry to hear that Noah is not gaining. I agree with Thais to do the metabolic testing just to make sure. We did it a long time ago and all came back clear.

We too are still sleep feeding two bottles at night. Hailey has cut out her day bottles, and also refuses her before bed. I think she probably gets in about 10 oz of fluids a day in terms of liquid (not in food). She will sometimes go for the whole day without eating anything, and only taking in a few sips of milk here or there, especially at the daycare. She’s content there, but doesn’t eat, don’t ask me why.

We did try cutting out the night feeds and see if she would take more in the day. We did it for over 1.5 weeks, and she still didn’t start to eat. Eventually I had to put it back in because she was only taking in about 5 oz of fluids, and not eating all day except a small meal at dinner.

At one year, she weighed 22lbs. At 13 months, 23lbs. 14 months, 24 pounds. 15 months, 25.4 pounds! I was able to really keep her on track with they hypercaloric feeds, and around that time she also was letting me spoon feed her which I guess helped with the weight gain. At 15 months, again she started refusing to let me near her with a spoon, and her eating has really gone downhill. She has no desire to eat or drink very much and usually throws the food at me, but we were discharged from feeding therapy at 15 months b/c they felt she had age appropriate skills, but a low appetite, which is not a feeding therapy issue by their standards. I just weighed her tonight, and shockingly, she is down to 23.4 pounds, so she’s lost 2 pounds in 1.5 months, which is much scarier then I even thought.

Like you, I am at the end of my rope with this and don’t know what else to do. If you can increase the periactin, that would be worth a shot. I’m thinking of crossing the border to pick some up- we do have it here but docs won’t use it for some reason (just my luck).

As for the psychology, as you know, we’ve been through both psychology and psychiatry and I believe that they’re all a crock of you know what when it comes to feeding aversions due to reflux. They like to blame the mother or the family which is just wrong. I personally wouldn’t waste my time (sorry to be so harsh), but that’s just my opinion.

I don’t have any other solutions. I also think an NG would be traumatic at this age, as well as a nightmare to get them to keep from pulling it out. Not that any of the doctors here think that Hailey has a problem. They don’t even care that she’s lost weight, and the biggest GI clinic here is going to d/c her after only seeing her twice in 10 months, and one of those times was to do her scope.

In terms of volumes, Hailey sounds similar to Noah except that when I last counte, we only get somewhere around 500 calories into her… that’s no so far off from her old levels (somewhere around 6 or 700) but she’s so active now and I suspect it’s just no longer enough now that she’s into everything.

I really wish that we didn’t have to go through this, and also hoped that by now all of these feeding problems would be a thing of the past. If it offers you any hope, Brian is doing well and is self feeding well and gaining weight the last time I heard from Sharon. Maybe there’s hope for us too. HUGS.

[Anonymous]

lisa, sylvia only weighed 20 lbs when she was 22 months old. even after her fundo she continued to be failure to thrive. once we removed her tonsils and adenoids the change in her was amazing!! she had obstructive sleep apnea, which can cause FTT—of course she was also reflusing food and spitting and chewing out food—-her tonsils were just too enlarged. this is probably not your problem, but i just thought i would throw the idea out there.

[Anonymous]

Oh Lisa, I’m sorry to hear this as well and do agree the metabolic tests might

be a good idea. We’re lucky here to get 700 calories (on a REALLY good day)

into Marisa but as active as she is she must have slow metabolism and still

gains. Slowly and has dropped on the charts but is gaining still (we think).

The increased Periactin may help too. Will he drink milkshakes? Great quick

source of lots of calories and fats…

[Author]

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