My daughter (2 1/2 years old) has GERD, Speech and Language Delays, and Sensory issues. See’s speech therapist and OT through Early On in our county but not during the summer as the school is closed during summer. In Nov of 08 she had her tonsils and adenoids removed by ENT as she was gagging, gasping for air and throwing up several times a night. On a scale of largeness w/ 4 being the largest her ENT rated them a 3.5 and looked at me and said thank GOD we did this when we did. Still….She has throw up that contains whole pieces of food at least 2X’s a week mostly at night (sometimes during the day) 5-6 hours after a meal. She is on Prevacid 15mg tab 2X’s a day and recently taken off of Raglan 1.5ml 3X’s a day as she has been on it for over 6 months. She wakes frequently from sleep and points to her throat area &: crying as if in such pain. She has had a scope done by Ped. Gastro.,a barium swallow as well and a dairy allergy test &: all turned out fine. Honestly, I am really becoming frustrated as something is just not right with all of this. She eats mostly pureed foods such as applesauce, pudding, yogurt, and most other foods take enormous amounts of prompting and still she refuses. Rarely can we get her to eat meats, bananas, toast, bread, sandwiches, spaghetti, mac N cheese mostly anything takes a great deal of prompting. She will however eat chips and crackers things that are very crunchy. She has enormous difficulty moving her tongue and smiling as you can see her strain her eyes to try to smile. Although she can smile (slightly) now as before she could not at all. Any ideas or suggestions are greatly appreciated. We appreciate your help.
Yes, it sounds like dysphagia. It also sounds like she needs the Reglan. My son passed his first barium swallow with contrast, then failed the next two. The first failure, he had to have honey thick liquids, the second failure, it was nectar thick. Finding whole chunks of food when she throws up means that she has an immature munching style pattern, and is lacking lateralization of movement with her foods. This also goes along with a paucity of facial expressions. I am not a feeding specialist, these are all things I have heard with my son.
This is contributing to the speech delays, verbal dyspraxia?
look at hyposensitivity to oral input
Does she stuff her mouth, drool, not aware of food left on her face?
Also, she may be tactile defensive too.
Suggest Wilbarger brushing protocol for sensory integration. Get Sensory defensiveness in children ages 2-12 by patricia and Julia Wilbarger
We get the three pack of Webber brushes from superduperinc.
Does she have low muscle tone?
Switch docs. If the therapists are not using a z-vibe, chewy tubes, nuk brushes, toothettes, maroon spoons, flex cut cups, ark baby grabber suggest switching. And if you aren’t seeing marked improvement in a few weeks time, switch.
Has she been to a feeding clinic?
How does she do with dissolveables? The gerber puffs? Then start solids, cheerios.
How is her weight? Our son’s was borderline failure to thrive before we found a good speech pathologist that addressed the feeding issues. He can eat anything now, drinking out of an open cup, is delayed. He is a normal weight now, 32 lbs, he will be 3 Nov. 1st.
Thanks for the complement, I added you as a contact, since my son has many of the same issues and is the same age.
That is so funny that you say that she talks without moving her mouth, we call our 2 yr old a ventriloquist, same exact thing. The weighted vest is great, she may need it more than 1x/day. We found that 1/2 lb ankle weights help, the neoprene ones that are designed for women’s fitness. They were 3 dollars at marshalls. We did get medicine balls too, and weigh down the shopping carts and dump trucks to push around. We also have a large trampoline, and that is great for joint compressions in the legs. My kids like the sqwishing with pillows too. We are only utilizing the free services as well, its too much to pay out of pocket with our other kids needs. His brother also has hypotonia among other things. My little one was diagnosed ADHD, maybe IDK, he really has alot of SPD and at 2, I am not sold on it, but yeah he does jump from high places, climbs, tons of bruising ect.
We also got a core disc from Marshalls’ for 10 dollars. It is like the abilitations ones, used for building up muscle tone while sitting (we have a family of W sitters), but we also have the cube chairs to increase attention to a book ect. An electric toothbrush helps, the vibration, to wake up the mouth. My guy has some single words but the pronunciation is poor. He just started babbling with a cvcv pattern.
I’m tandem feeding my three year old and my newborn, so don’t feel as if you are alone in all this. Your daughter still feels like she wants the breast, and you don’t seem like you actually want to wean her yet, so just let her lead you. By around 3 to 4 years old, she should be slowing down and only breastfeeding a few times a day (mine have all cut down to around 3 feeds per 24 hours at 3.5, and mostly liked to feed at night). It’s very normal and natural for toddlers her age to still breastfeed…and I agree with mystic on the poop issue. She’ll be having normal soft stools, that just squish in the diaper. It’s not normal to have solid hard stools that won’t squish, so rest assured, she’s fine in that department. Good on you for sticking to your guns and being determined to continue with this wonderful relationship with your children…they will only benefit from it. Check out some of the links mystic gave you, they are very good.
I was going to answer, but Beetlemilk pretty much said it all, and quite eloquently too. She knows of what she speaks as she has walked in your shoes.
It also sounds to me like her poor oral motor skills and tactile defensiveness are contributing to her feeding issues. Have you tried a ":mechanical soft": diet for her. It basically means that all food is cut into very small pieces so she does not have to chew them as much. Don’t get me wrong…it is not to be confused with a puree diet. When I worked in the nursing home a mechanical soft diet had all the food chopped into pieces about the size of a large pea.
ETA: my 3 year old, who has apraxia, is a gross motor sensory seeker too. He likes to do things like fall backwards onto our water bed, jump on our trampoline ( despite breaking a leg at 19 months), walk on the back of our couch, spin in circles til he gets dizzy. His newest thing is watching TV while doing a headstand on the couch. If you do not already have them, get your hands on a copy of ":the out of sync child": and ":the out of sync child has fun": both by carol stock kranowitz. They are an awesome resource.
Can your daughter use a straw well? If she can, have her drink her applesauce through a straw. I get the single serve cups and stick the straw through the foil…I bet yogurt would work well too. The sucking of thicker foods is supposed to strengthen their mouth muscles.
You might also see if you can get a grant through your local board of developmental disabilities before she ages out of Early On. My son only had 9 months in early intervention before he aged out and went to the preschool. As soon as he qualified for preschool he qualified for a grant through the BDD. We use the grant almost exclusively to pay for additional private therapy. We have $4000 a year for that. My older son is autistic and we got a medicaid waiver for him through the BDD. It pays for all his medical care and his meds.
feel free to e-mail me if you have any questions.