RainbowSprinkles Posted July 17, 2012 Share Posted July 17, 2012 Hi, I was wondering if anyone has any experience with feeding therapy for children? My ds3 is going to a feeding evaluation next month. My insurance will pay for the eval, but said they will decide further coverage based on the results. If your dc or any child you know has been, was the therapy successful? How long did you stay in therapy? What sort of things were helpful at home? I feel like we are finally going in the right direction. I knew something was not right from the time ds was an infant. I was always told that he would outgrow it, but he has not. It has just gotten so much worse. I'm positive a lot of the issues we were dealing with now, could have been avoided. Anyway, I would love to hear some encouraging stories/experiences. :bigear: Quote Link to comment Share on other sites More sharing options...
PeterPan Posted July 17, 2012 Share Posted July 17, 2012 Our SLP does *only* apraxia (which is motor control) and feeding disorders. She kicks BUTT and is amazing with apraxia, and the things she has said about her experiences with the feeding disorders sound just as good. So my advice is to find an AMAZING SLP and not just go with some run of the mill, it was local to us, whatever kind of thing, kwim? Here's the website for ours. http://www.teachtofeed.com Quote Link to comment Share on other sites More sharing options...
Dobela Posted July 17, 2012 Share Posted July 17, 2012 You want to find an SLP with experience in feeding disorders. The one my daughter used worked with children part time and a nursing home part time with stroke patients. She was FABULOUS! We lucked into her, but now I know I should have been asking for a feeding specialist all along, and asking what kind of background and current experience they have. Prior to this we briefly worked with a friend of mine that was an SLP specializing in infants with feeding issues but she was not nearly as good as the last SLP. My dd was a preemie and struggled with weight issues from the beginning. I knew something was wrong but it took me a year to get anyone to listen. Finally a swallow study was ordered and they discovered that she was dealing with silent aspiration and gave an official diagnosis of swallowing dysphagia. We first began thickening all liquids to honey consistency. We also saw a feeding specialist in the Children's Hospital, but she wasn't much help honestly. The feeding specialist was also a SLP, but since dd was young and the diagnoses were new, she didn't give us much more information. When dd was 3 she finally qualified for PT and OT who also recommended that I have a speech eval 'just in case'. When I began describing the feeding issues the SLP began using different evals than the usual language/articulation ones. At her suggestion we asked the pediatrician for a referral for therapy based on the swallowing dysphagia diagnosis since at that time dd did not qualify for language/articulation therapies. To our surprise, insurance approved the therapy with that diagnosis. Due to dd's low tone, we did all sorts of stretching exercises daily with her tongue, cheeks, lips, and special jaw movements. Interestingly, this same year our dentist determined that dd was slightly tongue tied. The SLP then began lots of work with dd and different foods teaching her how to chew, cleanse/swipe her mouth and teeth with her tongue, lick her lips, and so on. After 6 months of this oral motor therapy (2 hours weekly with the SLP, daily work at home), a follow up swallow study showed much improvement and much more control of liquids so she was allowed to thicken liquids less - to nectar consistency. A swallow study after one year of therapy showed so much improvement that we were allowed to stop all thickening. By this point dd was also growing so much that her specialists said we could stop the high calorie supplements such as pediasure. As an added bonus, we noticed that dd was eating a wider variety of foods and textures than ever before. Before the age of 4 she would not mix textures or eat foods with mixed textures (like breaded chicken nuggets or sprinkles on ice cream). Dd just turned 5 in March and is finally to the point where we can say she will try new foods and doesn't show fear of them. The only lingering issue we have is the habit to bite straws closed before drinking. In the past this slowed the liquids so she could control them, now it just frustrates her because she can't drink fast enough. The swallow study was essential though. Without one I don't think we would have ever seen the whole picture and may have treated dd's feeding issues as purely sensory when they were so much more, if that makes sense. I would love to hear how your eval goes! Quote Link to comment Share on other sites More sharing options...
prairiewindmomma Posted July 18, 2012 Share Posted July 18, 2012 My ^dd^ developed feeding issues as her brain tumor progressed. She had problems moving food around her mouth as well as swallowing. The most helpful person we saw was a REALLY awesome SLP. We were able to fix a number of issues, and then as we got near the end when the dysphagia was super bad and she lost her protective reflexes, she gave us tons of tips to keep her off of TPN and a NG tube (which was our goal). Some of the commercial thickeners taste awful....if they suggest them, ask for samples. We ended up using mashed potato flakes to thicken a lot of savory foods instead of the commercial stuff. Quote Link to comment Share on other sites More sharing options...
Dobela Posted July 18, 2012 Share Posted July 18, 2012 Some of the commercial thickeners taste awful....if they suggest them, ask for samples. We ended up using mashed potato flakes to thicken a lot of savory foods instead of the commercial stuff. I hated the stuff called Thick It. Nasty stuff that continued to thicken the foods until they were of an unedible consistency, sometimes before someone could finish the meal. We used Simply Thick mostly and liked it ok. It didn't continue to thicken, but it did change flavors some. Quote Link to comment Share on other sites More sharing options...
SkateLeft Posted July 18, 2012 Share Posted July 18, 2012 If your dc or any child you know has been, was the therapy successful? How long did you stay in therapy? What sort of things were helpful at home? My son gets weekly feeding therapy, and it's been a huge help for us. He's been doing it for about 6 months now. I attend sessions with him, and it's really expanded my toolbox. I've learned a lot of strategies for dealing with food. My ds has feeding therapy with his OT, not an SLP, and most of his feeding issues are sensory, complicated by his OCD. (He has to wash his hands constantly during eating, and his food is often "contaminated" by things that set off his OCD.) While his diet at home hasn't expanded as much as I'd like, we're definitely moving in the right direction. Quote Link to comment Share on other sites More sharing options...
RainbowSprinkles Posted July 18, 2012 Author Share Posted July 18, 2012 Thank you all. This is kind of my last bit of hope, other than that maybe he will grow out of it. Quote Link to comment Share on other sites More sharing options...
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