If you've had a child with sensory eating issues or texture issues . . .

I NEED YOUR HELP!! OR INPUT!! WHATEVER YOU CAN GIVE ME!!! I haven't been on in a while- just posting here and there. Many reasons, but one being I have been trying to take more time with the girls and take a break from being at the computer so much. I am starting to go through that blaming phase again- blaming myself for their issues- which I know better but sometimes I just have to do it- and then get over it and then life goes on again.

Here's the deal- we were evaluated in Sept. by a speech therapist who categorized them at being severely delayed. She did not want us to start therapy at the time until our 3rd barium swallow at the end of Sept. was completed. We are on half nectar consistency liquids secondary to oral pharyngeal dysphasia. (They've come a long way from where we were last year). Anyhow, time passed and I never heard from her- even after the swallow study so I made contact with her 2-3 weeks ago and she recommended letting them go for a couple of months and do a re-eval in January. THe girls went from saying nothing and associating little to in a matter of 2 months saying baby, ba- for ball, pe-k for peek a boo, bea for bear, and many other things- associating kiss, hug, all done, more, nose, sock, etc. HOWEVER- I thought we were getting passed our eating texture/sensory issues- Kaysie will eat little chunks of pizza, chicken, noodles, etc. but hasn't gotten any better - meaning we have had little progress getting passed her "safe" foods. SYD is my issue- she used to try a little piece of chicken, noodle, etc., but now NOTHING. She only wants and will eat baby food, yogurt/pudding, puffs, and chunks of fruit (apple, peach, melon). She'll eat tapioca pudding, and I put wheat germ in the baby food veggies etc. for some texture, and OF COURSE, she'll eat wax crayons!!! I am at a loss. I started brushing their teeth- rec'd to desensitize inside their mouth, and I just keep reoffering their food- but I am starting to worry now. I have a call into the speech therapist we saw- she's out until mid next week.

DO YOU HAVE ANY SUGGESTIONS??? I was calm. Now I am freaking. I'm tired. We already go to OT and PT 1-2 times weekly and EI (which in our state will not provide OT and PT- we have to seek that separately)the specialist comes out once weekly to check in. I'm pooped! Frustrated! I try to remain calm so she doesn't sense my frustrations.

 

I NEED YOUR HELP!! OR INPUT!! WHATEVER YOU CAN GIVE ME!!! I haven't been on in a while- just posting here and there. Many reasons, but one being I have been trying to take more time with the girls and take a break from being at the computer so much. I am starting to go through that blaming phase again- blaming myself for their issues- which I know better but sometimes I just have to do it- and then get over it and then life goes on again.

Here's the deal- we were evaluated in Sept. by a speech therapist who categorized them at being severely delayed. She did not want us to start therapy at the time until our 3rd barium swallow at the end of Sept. was completed. We are on half nectar consistency liquids secondary to oral pharyngeal dysphasia. (They've come a long way from where we were last year). Anyhow, time passed and I never heard from her- even after the swallow study so I made contact with her 2-3 weeks ago and she recommended letting them go for a couple of months and do a re-eval in January. THe girls went from saying nothing and associating little to in a matter of 2 months saying baby, ba- for ball, pe-k for peek a boo, bea for bear, and many other things- associating kiss, hug, all done, more, nose, sock, etc. HOWEVER- I thought we were getting passed our eating texture/sensory issues- Kaysie will eat little chunks of pizza, chicken, noodles, etc. but hasn't gotten any better - meaning we have had little progress getting passed her "safe" foods. SYD is my issue- she used to try a little piece of chicken, noodle, etc., but now NOTHING. She only wants and will eat baby food, yogurt/pudding, puffs, and chunks of fruit (apple, peach, melon). She'll eat tapioca pudding, and I put wheat germ in the baby food veggies etc. for some texture, and OF COURSE, she'll eat wax crayons!!! I am at a loss. I started brushing their teeth- rec'd to desensitize inside their mouth, and I just keep reoffering their food- but I am starting to worry now. I have a call into the speech therapist we saw- she's out until mid next week.

DO YOU HAVE ANY SUGGESTIONS??? I was calm. Now I am freaking. I'm tired. We already go to OT and PT 1-2 times weekly and EI (which in our state will not provide OT and PT- we have to seek that separately)the specialist comes out once weekly to check in. I'm pooped! Frustrated! I try to remain calm so she doesn't sense my frustrations.

 

I have no suggestions, sorry. Just wanted to send you hugs and tell you that we are going through the same issue with Sophia. She used to take stage 1 baby food, but than stopped and now she'll have nothing, but the formula. Everything else, even the apple sauce would make her gag and throw up.

 

You might want to PM Cassie05, I think that I remember from her postings, that she has a 2 or 3 year old with texture issues with food.

 

Just wanted to send you lots of Carley. I don't have any advice, but I'm here if you need to vent


Dragonfly76 - that ticker pic of Sophia is just adorable. I cracked up laughing when I saw it...gotta love that hair!

 

my nephew has those sorts of issues (his problem is deeper though and is linked to suspected autism and legal blindness)...he only has a few foods he eats (mostly carb based - pierogies, pb&j sammies, candy, chips and even at over 5 years old still baby food)...he won't eat ANY meat, ANY veggies etc...

I don't know what my SIL did - I know they did take him for "mouth therapy" (as my MIL called it) but he was a toddler at that point and I don't know what became of it because at that time DH and I weren't speaking to his side of the family much...

I know due to his vision issues he has issues with textures - he feels everything he eats and if he doesn't like the way it feels he won't eat it...

I'm sorry that isn't much help for you....

 

My first son had and still has texture issues. I too blame myself like I didn't make him try more foods. Anyway one thing I do regret is not following a suggested list of foods to start with when children have sensory issues. The speech therapist only saw us once, gave us the list and said work with him in his mouth (brushing his tongue) and follow up, that was at 9mos. Then he started eating up a storm a few weeks later so I didn't follow the suggestions or follow up. Then he regressed on and off. We went through cleaning up vomit at meals, because everybody told us we were just spoiling him and he should eat what we eat. Nobody understood how frustrated we were. Anyway he is now 4.5 yrs old, his doctor said it's probably psyco-sematic. We just moved 4 months ago and that is the area he regressed in. he won't eat mac and cheese(used to love it), won't eat any meat even chicken nuggets(used to be his favorite). We are just working with him to try it and then talk him through it,he gags but hasn't thrown up in a while. I get it, try to stay calm. And I don't know if the specialist gave you a suggested list of foods to try that work with the sensory issues, if not ask for one. In the mean time just keep feeding them what they will eat and stop blaming yourself. You are a GREAT MOMMY!!!! Keep us updated.

 

Is there a Children's Hospital near you? We went to the feeding clinc at Children's and got evaluated by speech/nutrition/OT/PT. It was grea to see everyone at once.

My main advice is to just keep up the good work! Just keep offering the foods along with their "safe" foods. Eventually they should branch out on their own. While many children decide after about 10 times or less if they "like" a new food, it took my guys over 100 times. My guys had texture/sensory issues and also had the same aspiration issues you have. Just keep on doing the best you can. We also got nuk toothbrushes from the feeding clinic that we used as their first spoons to dip in yogurt/applesauce/ect for them to feed themselves. And by all means, LET THEM play with their food. They need to touch it and feel it before they will put it in their mouth. Even if they just touch the food that's a start. Then putting it in their mouth even if they spit it out is huge. Eventually they will make the transition. Just keep on going! PM me with any questions Carley.

 

My ds has senory issues with food as well. Hes a 27 weeker and will be 3 next month. We went to a feeding clinic, saw a ST and OT there. They suggested we continue to try to offer foods, try different sauces if he likes them, offer only small portions at a time. He doesnt seem to know he has a lot of food in his mouth until he is choking on it, which is NOT fun! We were also told to start using an electric toothbrush to help him realize the feelings in his mouth. I can get him to eat random things, cheerios, junk food like chips, occationally chicken nuggets or pizza, sometimes apples or hotdogs. Its fustrating, so fustrating. The biggest suggestion to us was to not force him to eat, which my dh does all the time and it makes me crazy. Alot of times they will begin to hate eating and just wont if they are forced or if they do they make themselves sick. We do pediasure 3 times a day for him (if you qualify for WIC, ask your pedi to write you a prescription and WIC will pay for it all). We are also going back to the GI again, we are starting to think he may have silent reflux which could also be causing the food adversions. Hes gotten so much PT and ST in the home and were recently refered to an ST and OT out in town that are much more equiped to work with food senory issues in older children, unfortunatly we are moving so I have to find a good one when we get there.
My son didnt start talking alot until a few months back, he hardly said anythign and was very much behind in speech, then one day it happened, he decided to finally show off and now the child is never quiet We were doing both EI and ST once a week and it really did help over time, like over a years time. I really believe some kids just arent ready to talk.
I know its hard not to feel the guilt for our childrens issues but there was nothing we could do.

 

We are working with an OT for sensory defensiveness in our girls. They do have some oral defensiveness and she recommended doing a swipe on the upper roof of their mouth before and after they put food or toothbrush, etc. in their mouth. Maybe ask her about that method. Not sure if that will help.

 

I am very sorry to hear what you are going through. Your girls are absolutly beautiful. I remember when i was in my teens my mom(does home daycare) had a little girl and she would only eat baby food for ever or foods with very soft texture. Meat was a no go. She is now 18yrs and I think she still does not eat meat. Not that that is the same situation as yours. But maybe they will be born vegatarians. I hope every thing turns out okay. For your own peace of mind keep pushing for information and testing. Keep us posted. Tracey

 

Thanks everyone!! I appreciate the encouragement and suggestions. I will keep you posted. Today, I did a cream soup (chowder) with potatoes- and diced the potatoes up really small and she did fine. But it's rare that this happens. Did I say RARE?? I thought we were progressing and now this- and I feel I have let it go on way too long. So, we'll work on it from our end and see what the Speech Therapist says.

 

quote:
Originally posted by AmynTony:
my nephew has those sorts of issues (his problem is deeper though and is linked to suspected autism and legal blindness)...he only has a few foods he eats (mostly carb based - pierogies, pb&j sammies, candy, chips and even at over 5 years old still baby food)...he won't eat ANY meat, ANY veggies etc...


Ok, now I am scared, my son has big time texture issues, also had spinal issues (which now come and go), has "hammer toes, and some issues with the size and shape of his head. Should I be worried too. He is a big carb baby, unless it is baby food and even then I have to be careful what I give him. my mom said it was just a "thing", now I am wondering, and will try to find out some stuff to help. My twins are actually both doing this "choking" think, where even foods they have eaten several times and liked or did ok with are easily being choked on. Dunno, I will see what I can find.

Sorry I am not much help either

 

Just wanted you to know that you've been in my thoughts and prayers and will continue to be.

 

I don't know anything about sensory issues at all, so please disregard if this is way off base -- but I read a great book called "Child of Mine" about feeding, and the author points out that nearly all kids seem to regress or become very limited in their eating around this age. (Sarah used to self-feed all kinds of things, and now will pretty much only eat waffles, crackers, and purees.) They just get persnickety, and there's not much to do about it besides try to be patient, keep offering new foods, and wait them out. I know there is a lot more going on with your girls than that, but that may be contributing to it.

 

We just got home from OT and PT and I talked with the speech therapist that completed our pediatric speech eval- she stated in our conversation that she will have to call another speech therapist- she generally doesn't work with babies! Augh! Then I guess I am confused as to why she is the one that completed the eval. Our pedi, if you remember, was VERY HESITANT to write the eval for any therapy- she was not proactive. I talked with her and I think she has gotten better but now I have to go through this all over again. We have some state coverage and where we go now is not a provider for the speech part unless we go somewhere else and it is slim pickings and they all have waiting lists! If anyone else has any suggestions- I would be THRILLED to try them! I have been working with desensitizing and swiping their mouths as some of you have suggested! THANKS! I'm going to need some therapy when we get through this!

 

I am sorry for your problems and frustrations. Joe is vision impaired so is HUGELY texture sensitive and pretty much eats grilled cheese sandwiches, yogurt/pudding, puffs and animal cookies. He'll eat some dried cereals and grilled toast too but that's about it. I KNOW how frustrating it is and hard it is and wish I had suggestions and/or solutions!!! If our therapist comes up with anything that works I'll definitely pass it along. Our boys get OT/PT once/week and Joe gets vision therapy once every other week and right now the only thing she's doing is coming at lunch time and trying to help feed him different foods. I'm so sorry you're going through this!!! We should go to therapy together after all of this is through We're pregnant again (20 wks) and I'm on partial bedrest and so many restrictions too right now that I think I'm going to go crazy on top of how crazy I already am! I swear that if I figure out anything that works with Joe I'll let you know ASAP. Good luck with the therapies I know how hard it is to do all of the time but it's really worked wonders on our little guys in keeping them moving and caught up
Take care,
Jen
(PS - your girls are SOOOO adorable!!!)