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Feeding Therapy

el25el25
in Special Needs
I don't know if this is the right board to post on, but my son is way below the chart for weight, under 3% and he is diagnosed with FTT.  Has anyone done feeding therapy.  I am in the process of finding a therapist, and wondering what other peoples' experiences are like.
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Re: Feeding Therapy

  • lvnbraveslvnbraves member

    I'm not the best person to respond, but we've been working with an occupational therapist for almost 6 months and I don't feel like we're making progress.  We only meet once every other week and I swear every time we go it's try something else (or completely forgets what was said the prior time).

    Now we're starting to work with both OT & a behavioral psychologist...

    I think we'll wind up doing intensive therapy because I don't think what we're doing now is working.

    LO has CF (which has it's own digestive issues) and EoE, further complicating the matter and known allergies to dairy, soy, pork and we think rice.

    Baby Birthday Ticker Ticker Emergency ileostomy 11/28/10, CF dx on 12/3/10 and ileostomy takedown 1/24/11, feeding tube placed 7/1/11...still going strong! Little one lost 5w5d, 5/27/2012. CP 8/26/2012
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  • MaxandRubyMaxandRuby member

    DS2 (2.5yr with CP) has been in weekly feeding therapy since October but has been in feeding therapy prior that when he was younger (the therapy depended on various evals we had when I was moving between states due to my H's previous deployment). Anyway, he goes 2x/week for 30min each time.

    The most current round (started at 2yr in October), he initially was going for potential swallowing and choking issues coupled with a weak bite and not wanting to chew food. He was pretty much mashing food with his tongue and roof of mouth (not effective) and/or just swallowing food whole. We had to keep him on softer foods or make really small bites so there was less chance of him gagging, vomiting, etc. Since October he has made HUGE strides and we don't feel he really has a chewing issue anymore.

    We have started to switch the focus to clearing food off silverware with his upper lip and trying to develop a stronger bite. He is also having a swallow study done (focusing on drinking) to make sure that he is not silently aspirating liquids as his feeding therapist has had some concern with this. He currently still uses a sippy cup with a valve but can sometimes drink through a straw. As long as the test comes back ok, we will then start transitioning to straw and open cup use.

    For DS2, feeding therapy has been a positive experience. We still have a few goals (to include some behavioral issues with eating) but overall he has made big strides in a short amount of time.

    ETA: Our feeding therapist is also a SLP. I saw the other poster stated they use an OT so wanted to clarify what kind our therapist was. We used a SLP in previous feeding therapies also. The one where it would have been an OT, he didn't actually qualify for feeding services at that time but we were welcome to ask questions about it in a consultative manner. 

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  • st.augbridest.augbride member
    Our private ST also spends half the session working on feeding. At first she assessed his physical ability to bite, chew and swallow. She says his tone is a little low (as it is everywhere), but his mechanics look great, so we work on just having him be comfortable eating and trying to get him to try some new things or tools (like the toddler fork, etc...). While it isn't majorly life changing, I do find her very helpful and have learned from her. That is the opposite of our "feeding therapist" through EI. She does NOTHING! She literally sits there watching me feed him and every now and then goes "hmm, have you tried meatballs?". Yes, lady, I have tried meatballs! He doesn't want that either! Such a waste of time, but I need to keep the IFSP open for insurance purposes... So, I guess my point is that 1) it can be helpful, but won't be a miracle cure unless they find something physically wrong, and 2) you need the right person. Has a GI checked him out? Ds is between 1-3rd percentile, so he's now on pediasure and concentrated formula, and we rely on that for most of his nutrition at this time until his feeding progresses.
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  • timewilltelltimewilltell

    DS isn't even on the chart at all for weight so FTT is a diagnosis for us as well. Our problem though is that we eat ALL THE TIME and don't gain. However, we do have some issues. He likes to swallow food whole and then pretend to chew. Unless you REALLY watch him, you'd think he was eating normally. He also has some low muscle tone so that's not helping his issues.

    We don't do "feeding Therapy" but we do have a dietitian, OT, and SLP that work together on some oral motor issues.

    Z(Monkey) 6-30-07 and E(Bear) 9-6-10 Living life with my little warrior and his big brother :)imageimageimage
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  • el25el25

    My son has seen a GI, and we have ruled most medical issues out.  I had a feeling EI would be useless.  We just switched to whole milk, and my GI told us to put carnation instant breakfast in it.  He likes the milk but not the instant breakfast.  I am trying to set up a private evaluation (outside of EI) and I am hoping that we will make some progress.

     

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  • marcuejmarcuej member
    imageel25:

    My son has seen a GI, and we have ruled most medical issues out.  I had a feeling EI would be useless.  We just switched to whole milk, and my GI told us to put carnation instant breakfast in it.  He likes the milk but not the instant breakfast.  I am trying to set up a private evaluation (outside of EI) and I am hoping that we will make some progress.

     

    How is your son doing with his gross motor skills?  Is he behind in that arena too?  Has he always been a poor eater of solids?  There is a nutritional powder called Duocal that you can add to his milk to increase calories and fat.  We just started adding 2 scoops per 8 oz. of milk per the recommendation of our doctor.  If you can get your doc to write an RX, insurance will cover it.  

    We've been down this road with my DD #2 and it's such a challenge.  Don't give up finding an answer because there could still be something causing the feeding issues.  My daughter was diagnosed with a very rare disease last month that was overlooked for a year.  We went through tons of testing with various docs and we finally got our answer after some blood work came back funny.  It led us to a pediatric nephrologist who was able to correctly diagnosis our DD. 

    FWIW, we've been doing feeding therapy along with PT for 7 months now and it's actually helped a lot for both her feeding and gross motor delays.  

     

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