We had feeding therapy with my son doing Vital Stem on his throat muscles and that has worked wonders with his swallow and has allowed him to eat safely at honey consistency orally. Have you tried this? However, my son has issues with tongue placement and has limited jaw movement--- especially keeping his tongue pressed down and opening and closing his jaw fast enough to do something like babble "da da". We haven't had jaw distraction surgery, so my guess is that his tongue is still somewhat displaced in his mouth (although it isn't blocking his airway). Does Tucker have issues with jaw movement or tongue placement?
I have looked into this it is still on my radar but he was not able to have any food due to aspiration. we go back to the dr this week to see if we can get cleared to start trying again.
Have you tried to use flavored formula (I use Elecare Vanilla, Jr because Benning has a casin allergy), and put Simply Thick into it with a level 4 dr browns nipple. I started Benning out at nectar consistency (even though he aspirated that) in very limited quantities just to get him used to the texture and taste. Then I increased to honey consistency (still mild aspiration) and then now I do pudding consistency regularly (with no aspiration). There is a balance in our opinion (and the opinion of our specialists) with not eating and limited micro-aspiration (although I might get negative feedback for saying that). My husband is a physician so we watched him closely as we began the oral feeds journey and throughout. Now his suck/swallow coordination is so much better/stronger because we did it. I just couldn’t accept failing a swallow study meant no oral feeds for an answer by our GI doc. I didn’t think he’d ever get better that way. He now eats all meals by mouth except at night (when I hook him up to the pump in order to push more calories through him). However, when he is sick, and has limited appetite, I also will tube him to ensure he doesn’t lose weight.
Hello I am French and I have not found any video of the same type, so I am happy to have come across yours. My little sister who is 18 months old and who had until 5 months ago a normal development had neuroligic lesions perhaps due to an encephalitis which caused her multiple sequelae such as hypotonia in the head, hypertonia of the 4 limbs and dysarthria. She can no longer say certain words that require the lips to be brought together (such as "papa" = dad or "maman" = mom) because she constantly has her mouth open. Do you think the exercises presented to help her regain these capacities at least partially? I would also like to know if you had any tips or exercises that could help her to hold her head? Sorry for this long comment and maybe the few mistakes. thank you very much for your video which I think will be very useful and which I will test tomorrow morning with it. Good luck to you and your little boy and all your family, I wish you nothing but positive. Merci.
I am so sorry to hear about your little sister. I would say this exercise will help. They have been helping my son. For head control if you have a big ball have her lay down on the ball and lift and roll the ball. I did this exercise with my son he didn't have good head control till about 5 months old. Is she on a gtube? I am also going to be doing some video on helping speech
How is your daughter now? My son is 14 months and doesnt put anything on his mouth. He had gtube last january and we are seeing feeding thereapist. Tha kd for the response.
@@tiffanyfitzsimmons7376 As a mom of a non verbal 3 year old, I see you strengthen his mouth with your hand massaging. Can you make a game out of this? Have you ever placed your hand on and off his mouth to try to teach him Wa Wa Wa Indian sound?
