(not the three pieces featured in the photo, but just ONE piece) she offered up this excuse (while all teary eyed):
"Eliza can't try pasta, it is prickly and makes booboos on Eliza's knees."
If there was ever a sign that I should just accept Eliza's liquid diet and move on, this was it.
How in holy hell can pasta make booboos on your knees, prickly or not?
Oh and please refrain from commenting that (a) one needs to present a food multiple times before a child will accept it or (b) many children are picky eaters. I would gnaw my own arm off to have a picky eater, maybe both arms.
I give up.
No advice here, just HUGE (((HUGS))). Prayers & Blessings from your West Coast friends.
ReplyDeleteI am not four years in (only 2.5) and we do have five foods, but I get the "just give up" feeling. (((HUGS)))
ReplyDeleteMy son has no idea what to do with solids once they are in his mouth. We have at least gotten to the stage where he will put stuff in his mouth! Is your daughter able to chew and move the food with her tongue? My son doesnt seem to know how to do either. I have mostly gotten blank stares from professionals when I ask how to help teach him these skills. We have been using slim jims for about a year now and it doesnt seem to help him learn how to chew other food. Have u been given any good advice or suggestions in these areas?
ReplyDeleteShari, how old is your son? Is he seeing an SLP and an OT? Eliza's SLP was pretty good in helping to develop her chewing skills and one of her OTs works on her sensory issues. Much of Eliza's feeding issues now four+ years post NICU are behavioral. One thing that helped with chewing and biting skills was to have Eliza look in a mirror when she was practicing biting and chewing so she could see what she was doing. I would do it with her and she would try to mimic what I was doing.
ReplyDeleteMy son is 3 1/2. He has seen many OTs, SLPs and behaviorists. We have only started working on chewing this year. Unfortunately he aged out of the early intervention program that our state has and it is now harder to get good therapists. We are mostly working with him on our own now. He does have a good SLP that works with him a bit at school. I just feel like the progress we are making is SOOOOO SLOW! I feel like he is never going to be able to eat at this point. I am trying to figure out what else to do with him at home. We are a little burned out with the whole thing.
ReplyDeleteShari,
ReplyDeleteHave you looked into any feeding programs? Do they have any in your area? Some programs meet with good success with some kids since they address the oral motor, sensory and behavioral issues. Also some insurers will pay for the outpatient programs.
Anne -
ReplyDeleteWe did a behavioral feeding program 2 years ago. It got him off of the feeding tube and eating everything orally - but he has mostly been on a liquid and puree diet since then (mostly liquid). We are currently in another experimental type feeding program in our area that uses drugs. Since being in this program he has started putting food into his mouth as well as increased the amount of puree he eats. It is the first time I have really every seen him want to eat. He has made some progress with his oral motor skills but I feel like we arent doing enough in that area to help him.
I have yet to find a really good oral motor program that works for him and accepts our insurance. We have already drained our money doing the other feeding program. We are just plodding along at home now. I have kind of accepted the fact that it may be years before he is able to eat normally.
I also have a newborn so it is now harder for me to take my older son to therapists regularly outside of the home. I also need to keep my older son on a very regulated schedule (ex-preemie syndrome). What type of things did you do for oral motor skills to work on tongue lateralization and chewing?
I'm not sure I have any grand ideas, especially given my astonishing lack of success getting Eliza to eat after 4.5 years of trying :)
ReplyDeleteWe did a lot of work in front of a mirror at a table practicing biting, munching, chewing up and down and moving our tongues side to side. We also used a variety of tools like chewy tubes and bite blocks I think they are called along with various crunchy meltable foods like veggie stix and pretzels to practice with.
Can you maybe just go for a short course with an SLP to give you a home routine to follow?
Yeah those things are mostly what we have been doing already too. My son has always refused to chew on any type of chewy tube or therapy type thing. It think that is why most therapists have not known what to do with him. He has just recently been more willing to try new things. At this point though the only thing he is willing to chew on is a slim jim. He does ok with dissolvable solids - but he mostly packs them against his front teeth and sucks on them until they dissolve. This means that it takes him several minutes to eat one chip. He also gags and throws up very easily if the food gets too far in the middle or back of his tongue. I have had several therapists tell me that he is one of the hardest cases they have dealt with. Since your daughter also seems like one of the more extreme cases I thought you might have some suggestions! We will just keep plodding along. We still may try giving him an appetite stimulant. That is one thing we havent done yet. I just dont want to make him frustrated if he doesnt have enough skills to eat yet. One day..... I dream of the day I can go somewhere and just let him eat in the back of the car while I run errands!
ReplyDeleteEliza can't eat any type of pureed or mashed food, it results in endless gagging and vomiting. When she was young she was so sensitive to textures of any sort, she would gag just touching playdoh. Some things that helped with that was Wilbarger brushing, joint compressions, having Eliza play in large bins of rice and such. Maybe that would help with the gagging?
ReplyDeleteWe have tried all those things as well. I dont think my son's gagging issues at this point are sensory. They may have steamed from sensory issues when he was real young but now it just seems more like a learned behavior and lack of oral motor skills. He just seems to get freaked out if food gets toward the back of his tongue because he cant control it then. He then just throws up instead of swallowing it. He also used to hate playdough, but after much therapy he actually likes it. The brushing never seemed to help him.
ReplyDeleteI think there should be bonus points for having a very creative child. She is nothing if not creative! Haven't talked to you in a while. Hope all is well. Erik is in school so my weekends have been crazy but hope to get to talk to you soon!
ReplyDeleteThat is too funny. I'm sorry you have to hear such crazy things, but thanks for sharing the laugh!
ReplyDeleteSometimes my son says things that are just so funny that I forget they are completely contradictory to my goal at the moment.
ReplyDeleteI completely understand the arm gnawing response to strangers' advice. In the areas where my son is behind his peers, people think that if they just repeat the simplistic, parent magazine, one-size-fits-all sound bytes, all will be solved. Give me a bit of credit, people--I can read, too. Been there, done that.
Oh, Eliza Grace, you are a funny, creative girl. This will serve you and your mom well as you continue down this road.
Ok, I've been trying to figure out how pasta could make boo- boos on her knees. In one of her therapies, did the therapist by any chance have her play with pasta (like the rice or beans box), and she crawled around in it, making a boo- boo?
ReplyDeleteYour daughter sure has a creative mind! I love reading your posts- it shows me that we're not alone in all of these issues sometimes!
I like Eliza's excuse! I'm afraid I have no idea of how pasta can be prickly or make booboos but you've got to give her marks for originality.
ReplyDeleteI hope that Eliza's witty excuses ease the frustration just a little, it must be so tough.
@GavinMitchell:
ReplyDeleteNope! Never sat Eliza in bins of pasta, only rice and beans :)
Today's excuse on green apple slices: "they make her sneeze." The red slice was seemingly OK, and she took a bite.
Sneeze and Knees do rhyme, so maybe that's her logic.
I have a 4+ old preemie (24 weeks). I was wondering where Eliza is with potty training. my daughters sensory issues are making it impossible for her- her anxiety goes into overdrive when she sits on the toilet- forget doing anything in it. Completed a "toilet school" program at Childrens Hosp. Boston- no luck. would love to hear your experience if you feel like sharing
ReplyDeleteHi Alison,
ReplyDeleteWhen I started potty training in earnest when Eliza was about 4 she would scream, yell, cry and flee from the bathroom. I took a break from trying since it was just causing Eliza too much angst. After a month or so, I did a four or five day weekend at home where we basically never left the house and Eliza only wore panties. I could not begin to count the accidents. Eliza was moderately interested in stickers as a reward so I did that and every 20 minutes took her to the toilet for five days and she got a sticker even if she didn't do anything while on the toilet. The reward seemed to lesson the anxiety about using the toilet.
After the 5 days Eliza went to school (with panties no pull ups) and the school took her to the toilet every 20 minutes for several days and then slowly upped the time between toilet trips. At one point after 2 months or so the toilet trips were spaced two hours apart, then Eliza started having accidents and dropped back to every half hour and started again.
The things that seemed to help were the consistent routine with home and school (Eliza goes to a developmental full time preschool and they really were partners in potty training), no pull ups at all during the day, a small reward system and very, very frequent trips to the toilet. We did not change this routine if we were out somewhere and frankly skipped a lot of social functions since I did not want Eliza to have an accident at someone's house but I also did not want to put a pull up on her.
Not sure if any of this helps and I suspect you have probably tried all of this.
Best of luck!
I was just wondering the other day if her food issues were getting any easier. I was making a smoothie w DD & thought hhhmmn I wonder if Eliza would do this? But Congrats on the apple I don't blame her green apples are to sour. ;)
ReplyDeleteCoCo
Coco, Eliza likes the idea of a smoothie, they just never are smooth enough. The slightest hint of fruit pulp results in a "no thank you!" ... at least Eliza is polite about it :)
ReplyDeleteAnne, You are so strong! I have not had the patience to sit for days going to the toilet every 20 minutes. I tried it for 1 day and just lost my patience too quickly. I know I need to try harder and I use my child's sensory issues as an excuse but it is like pulling teeth to even get her in the bathroom. She has extreme anxiety about sitting on the potty. She just learned to squat instead of tighten her legs which is really with-holding. She is on mirilax and ex-lax daily for extreme constipation and at first her dr's felt it was more important that she go than where she goes but now that logic has shifted and I'm stuck with a 40 pound child in pull-ups. UGH! I could go on for hours. I'm envious of your dedication to this process. The school my daughter attends does not have the same philosophy on potty training. They make the kids sit all day until they go. My child could never tolerate that and it would sky rocket her anxiety. I've just recently got her to pee while sitting on the potty, with a pull-up on AND with a hospital "hat" in the toilet. It is always an ordeal!!
ReplyDeleteI'm glad that Eliza has had success in the bathroom. I think I'll take some snowy days this winter and try your approach. Thank you so much for sharing!
Alison
Hello,
ReplyDeleteI happened onto your blog. First to see what your Eliza Grace looked like. You see I have a daughter named Eliza Jane. Once at your blog, I discovered something of much more interest to me. We both have daughters that are 26 week preemies. Our daughter is adopted. She came straight home from the hospital at three months to us. Our daughter Drew Elizabeth was a twin who lost her brother in utero. She was born a big 3 lbs even. 13 inches long. She was on the venalator only 1 day. We have been very blessed. Her birth date was January 26, 2005. Today she is a healthy 5 year old. She is tall in the 95% for her age. Her specialists from the early years all marvel. The only real problem she has had is a flap in her throat caused by the venelator. It may have to have surgery on it in the future.
I want to wish you and your Eliza Grace blessings for a strong future.
My daughter too is the light of my life!
Sweetest regards,
Shelley
P.S. I did read the comments only to discover potty training issues. Well that was a problem for us. She is still in pull ups at night. I guess I never tied that to sensory issues.
I just read a fiction book and in it their was a character who had "Synesthesia" where food tasted like 'shapes' or described as pointy, etc. This may be way off, but I had to pass it along in case it might be helpful. Not sure if this is helpful, but just in case I thought I'd pass it along ... Eliza and you are both in my prayers!
ReplyDeleteThanks Lacey! I just read up on Synesthesia. Pretty interesting stuff. But now you have me curious about the novel it was mentioned in!
ReplyDeleteI'm late in on this and have no magic either. I'm impressed with how much you are helping other commenters, Anne. You certainly have worked hard on this issue. I have a series on feeding/eating (linked in a box in the middle column) on my blog. It is not behaviorally oriented but there might be a tip here and there from another parent (commenter).
ReplyDeleteWishing you the best, Barbara
Barbara,
ReplyDeleteThanks so much for pointing me to the section of your website! I am diligently reading through your posts and the comments!
I am sorry it is so tough. It is not easy to understand unless you are in the situation.
ReplyDeleteWe are blessed in the food arena with all of our children. Aidan started out at 2 pounds 10 oz and he is now close to 40 pounds and he is not yet 3 years old.
I am really sorry for the frustration. The whole process along with dealing with the various therapists must be very tough and tiring.
Oh Jeez.
ReplyDeleteThis is not to be misconstrued as advice in any way...I am clearly in no place to give advice on this topic...however, I do have a friend of a friend whose child had significant feeding issues who told me that the drug Buspar saved their (child and parents) lives. Eliza is still really young, and I know the drug is not approved for children, but my acquaintance's child took it while he was still quite young under the supervision of a doctor while working with a feeding clinic. It was the only thing that finally got him to eat. Interesting that it is an anti-anxiety drug... Anyway, maybe you've already researched it or have heard some about using anti-anxiety medications with non-eaters, but I thought it was interesting and something you may keep in the back of your mind someday down the road.
Oh, and do you know about an inpatient feeding clinic in Grand Rapids, MI? I have a another micropreemie friend who is looking to get in and is on the waiting list. There may be others that are closer to you. I wonder if inpatient would be any help for Eliza?
Anyhow, I don't know how you do it, except that you just don't have a choice. I feel like I will go crazy sometimes and my kids DO eat...just not nearly enough and not without someone hand feeding them every (not really but it feels like it sometimes) bite.
You are both amazing and I wish we could meet. Holland and Eden REALLY want to see Pinkalicious the Musical. If it doesn't come to our neck of the woods we may just have a trip to NYC in our future!
Billie,
ReplyDeleteI'm glad ot hear that your friend had success with medication. There is another mom on the preemieblogmoms group whose child also was on an anti-anxiety med and it helped quite a bit. We are seeing a pediatric psychiatrist and I am exploring the medication options at this point, since frankly nothing else has worked. It is clear that despite the OT feeding people claiming that it is Eliza's poor oral motor skills that are hampering her eating and the SLP feeding therapists claiming it is Eliza's sensory issues that are effecting her eating, that Eliza has functional oral motor skills and her sensory issues are not severe anymore and fairly well under control.
And for the record Billie ... you are always welcome to offer advice on feeding :)
OMG, as a Mom to a micro-preemie who is on mostly liquid diet- all I can say is I feel ya sista! If they tell me any of that general advice about number of times to offer food or that he will eat when he gets hungry- I might flip it! My son is only two so his refusals are not yet so creative. he usually sticks w/ "NOOOO!" thanks again for the post :)
ReplyDelete