I am to a point where I really need someone’s help so if anyone is skilled in this area, please let me know.
Olivia was born, as you know, at 23 weeks. She never had a g-tube and has been 100% orally fed since leaving the NICU. But, it has been a struggle from the beginning. More than 70% of premature children have a feeding disorder. I have really begun to realize the extent of the struggle after watching Abigail eat so effortlessly. I’ve known of this struggle all of her life and yet I could not get her doctor concerned. Olivia has never surpassed the 1% on a growth chart, but she maintained her own line. . .until this past year. I don’t know who can help me. Therapists at her school cannot help because it doesn’t directly affect her education. I’ve checked in with Heartspring and they simply left a message on our answering machine saying that she wouldn’t qualify. I finally found a place who was confident that they could help, Erin Is Hope Foundation, and insurance would NOT cover it. They said it had to be done by a medical professional and not a speech therapist. Her doctor is the one that referred us to there! So, that has been a big fight. I’m reading all that I can on the subject, but I don’t really know what I’m truly dealing with. She has oral aversions. She chews on certain foods, but can’t swallow them. Hours later, she will still be chewing on the same piece of meat. Frankly, I’m thinking of going back to school to become a speech pathologist JUST so I can learn how to help my child eat. I literally cannot find her the help that she needs. I feel like she’s falling through the cracks.
Here is something interesting I’ve read:
My belief is, children eat the crunchy crackers and chips not just because they like them, but because they only have the skills to eat those foods. They eat those foods because they can breathe around them or they are successful. I don't necessarily think they love those crackers," she said.
In food chaining, the clinician put foods in an order and builds the child's oral motor skills. "We have to develop flexible oral-motor skills," Fraker said. "These kids literally do not know how to sequence the motor patterns to eat food of different textures. For example, with a challenging food like meat, you need to stabilize the bolus of food inside of the cheek, chew a piece off, and then swallow a portion of it and repeat. We teach the mechanics of eating different foods. I tell them, 'You drink soup differently than you eat a pretzel, mashed potatoes or a steak.' If you use the same pattern over and over with those foods, you'll gag, choke, and be unsuccessful."
Clinicians need to consider the sensory side of feeding. Take special note of a child's behaviors. Only 3-12 percent of children have a purely behavioral feeding disorder, yet over 90 percent of what people do to treat it is behavioral, she said. "You've got to build oral-motor and sensory skills, and you've got to get the body feeling well, or the child is going to say 'no.' It's not a behavioral 'no,' it's a 'No, my body can't handle this.”
I found this especially interesting since tonight, while eating beef and noodles, Olivia said, “Mom, I’m still eating this. I don’t know how to swallow it.” Of course, her teacher sees no eating problems because all she eats at school are snacks like cookies, crackers, etc. She knows how to eat all of that stuff. It’s vegetables and meat that she really struggles with. And when you don’t eat much, you don’t have much of an appetite either. As a parent, I worry so much about her nutrition and giving her a well balanced diet when all she wants to eat are Pirate’s Booty cheese puffs and chocolate milk. You want to see your child grow and thrive and be healthy! Olivia is so skinny that any illness just terrifies me. Most 2-3 year olds weigh more than she does. But, it’s not just that she is small. I was small. There is nothing wrong with that. I just know that she isn’t getting the nutrients and calories that she needs to grow. I am the one that sees her eat every day. So, if anyone can offer suggestions. . .books, websites, ways to get insurance to cover this, etc., I would be forever grateful. Nothing is more frustrating as a parent than not being able to get your child the help that they need. Thank you all so much for listening to my rant. I want to help her so badly. . .and I don’t know how.
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8 comments:
If she doesn't like chewing, why don't you make soup and include lentils and potatoes with various vegetables. Once you purée the soup she can even drink it from a drink bottle or through a straw. Lentils are an invaluable food item. So high in protein and fibre and so easy to digest. Every time I make soup I include some red lentils. It makes the soup into a real meal, especially if eaten with some bread. And the best thing about soup is, the nutritional vitamins that are in the vegetables don't go down the drain. We don't really buy convenience foods except pizza and maybe fish fingers. We also don't have big convenience food aisles like you do in America. So I am very conscious of what we eat and whether it is high protein or not. I she likes mashed potatoes, why don't you mash the carrots or spinach into the potatoes? It makes orange or green mash. Also fish doesn't take much chewing so a nice piece of cod can also be flaked into the mash to give protein. My daughter is the same age as Olivia and she is also pretty small. She wasn't a preemie...in fact she came one week late and under duress! However, she is 44 inches tall and only 38lbs, which also makes her about 8lbs under weight for her height. But to be honest, I would much rather have her under weight than over weight. I know she eats an excellent diet, and has plenty of energy. I try to avoid snacking between meals to ensure her appetite is okay come meal time. I also try to avoid crackers because there simply is no food value in a cracker. I admit, we do take crackers with us for convenience of we are out for the day. Anyway, whatever you do, good luck.
Have you thought about feeding therapy? I am not sure if insurance covers this but it might be an option. Why would insurance not cover speech therapy? It's a need that she may have. I love how insurance companies pick and choose what they will or won't pay for. This is obviously something that needs attention. It's not like shes just a picky eater. Does she like smoothies? I make Carson smoothies with spinach, apples and bananas. I add a little coconut oil in order to get some extra calories in there for him. He is just a picky eater and his OT does not think he needs feeding therapy at this point. The fact that she told you that she is unsure of how to swallow the food is enough justification that she needs a therapy for this.
Hello! My daughter was born 28 weeks with IUGR and was 645grams. At 3 years old she was about 26 pounds. She was considered failure to thrive and would only drink pedisure in small amounts throughout the day. She rotted her front teeth out from the pedisure. The only real foods she would eat were crunchie foods. Anyways we were able to get into the program at Kennedy Krieger. It is an intense program, but it works! My daughter is 7 now and she eats well. She eats normal dinners like hamburger helper, chicken, broccoli, rice, steak, carrots, etc. She is still small, but her feeding issues are a thing of the past. They get a lot of OT, speech and other therapy in this program and families travel from all over the US to participate. They are great at working with insurance companies. http://www.kennedykrieger.org/patient-care/diagnoses-disorders/feeding-disorders Hope this helps! Elise Smith
At 2 yrs old, Olivia was only 19 lbs and yet she never received a failure to thrive diagnosis? At almost 6 yrs old, she is barely 32 lbs. We never had trouble getting her OT or PT services covered. They won't cover any behavioral feeding issues. They just don't understand micro preemie issues. Thanks for any help that you can provide.
Olivia's problems sound very very similar to Chloe's! She tries to eat vegetables and meat. She really tries! But they seem to get 'stuck' on top of her tongue in the back. She starts gagging and no matter how much we try to explain she just can't move it off. I either fish it out or she vomits. It's inevitable. Greens, cabbage, broccoli, cauliflower, steak, pork chop/loin, corn, peas - these are all out of the question. Everyone tells me she'll grow out of it or figure it out eventually. She's going on 4. But I'm sort of a control freak about my family's diet. We eat all organic, hormone-free, antibiotic-free, and vegetarian every other day. I make all our bread and avoid processed food like the plague. So you know it kills me when Chloe can't eat what I've cooked. I adjusted my cooking. We eat lots of soups, and I seek out recipes that prepare vegetables in a way she can eat them. Like a recent golden find: Orzo with asparagus/spinach pesto. Tonight I made tomato, kale, and barley soup and pureed Chloe and her sister's servings. (Big sister requests her food pureed sometimes just for fun.) Chloe's weight is ok now but I don't think it would be if I hadn't been so creative with her food. I used to mix greek yogurt into all her purees when she was learning to eat. I also bought a Vitamix to help with all the pureeing. And we drink lots of smoothies. I'm able to sneak hard-to-eat veggies into her diet that way, too. Spinach, kale, broccoli, etc. I also keep a lot of frozen peas on hand to puree when I can't adjust something for her, like cole slaw or salad. Oh, roasted butternut squash cubes are doable, too. She still tries almost everything before I puree it and bless-her-heart she really gives it a go. People think I'm crazy when I say she can't eat something or that she's just picky. But she's really not. I'm actually heartened to read your post because I felt so alone. I hope I've given you some ideas to at least get more nutrition into Olivia in the meantime. Good luck getting her therapy.
I have a friend who has a 4 year old that has eating issues. Certain foods she won't touch, especially vegetables. There are even some foods that if she just sees them on someone else's plate then she will start gagging. They have had a lot of success with a speech therapist and she's eating foods she wouldn't eat before, insurance does not cover it though and it is expensive/
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