feeding issues due to poor oral tone hypotonia

[Anonymous]

After months of frustration and struggle, it seems this may be the cause of poor feeding from Day 1 for our toddler. If you went through a similar ordeal, can you please share how it was evaluated and treated and if any of it helped? It seems our little one is hungry but tires easily and never latched.

[Anonymous]

Our son was also born with hypotonia and had numerous feeding issues. Through the Infant and Toddler Connection of Fairfax county, We were able to have an occupational therapist work with him on feeding issues. He has improved in a lot of areas. I try make sure he has plenty of liquids to help him with eating, whether through drinks or the food itself. I make plenty of soupy stews. He's now four and working privately with another OT for feeding issues.

[Anonymous]

DC was born premature with global developmental delays and had OT from 14 to 24 months, among other therapies. OT helped a little bit with the oral-feeding sensation.

What really worked was patience. He took 2 SOLID hours to eat each meal until he was about 2.5 year old.
I had left my job when he was a year old, and I recall spoon feeding for hours every day, waiting for him to chew and swallow, also prepared for the inevitable gagging. I made up a little "chew and swallow" song to encourage him. He was EXCRUCIATINGLY slow, and would get tired as well, but at least like this he got enough calories and could hover at the 3rd percentile for weight instead of having failure to thrive.

Things got slowly better and now at 9 he is at the 25% percentile for weight, which is in proportion to his height!!! He's still a slow eater, and rarely finishes his lunch during the 20 minutes max they have at school (ridiculously short, BTW). But we have come such a long way I can hardly believe it.

Courage, OP. Things will get better.

[Anonymous]

Speech and Language therapy. They know the muscles of the jaw and mouth and will help with this.

[Anonymous]

Anonymous wrote:Speech and Language therapy. They know the muscles of the jaw and mouth and will help with this.

Same. Had an evaluation by OT at Children's and they referred me to a Speech therapist. The Language Experience provides this type of therapy - not all ST do it.

[Anonymous]

Children's has a feeding clinic.

[Anonymous]

WE had huge issues after adopting our SN son from Russia at 12 months.

We used Kennedy Krieger outpatient and it was terrific. Some have said they abhor it because they do use forced feeding techniques -- safely of course. But my child had psychological problems as well since it appears the orphanage forced him to eat solids too early and before he could handle them and so he had a huge fear complex of choking associated with likely real choking. But personally that worked well for us once we established he was physically able to handle the solid foods and it was a matter of getting him trained up to realize he could eat solid foods and. Had the sweetest young OT showing me how to hold his jaw and encourage the manipulation of the soft food. He LOVED her and it was a godsend to us and our daycare at the time.

[Anonymous]

We have a low tone kid who preferred soft foods for a long time.

Now he's a picky eater and I don't know if the having low tone has to do with this or if it's more sensory related. I think it's the latter.

An OT recommended this book:
http://www.amazon.com/Just-Take-Bite-Effective-Challenges/dp/1932565124/ref=sr_1_1?s=books&ie=UTF8&qid=1405617363&sr=1-1&keywords=just+take+a+bite

Oh, yes, and we've done lots and lots of speech therapy!

[Anonymous]

OP. Thank you for sharing. It is excruciating. I get about 4-5 hrs of sleep since I also work full time from home. We see an SLP for feeding - been to 10 sessions so far and all she does is encourage LO to feed - and LO is deathly afraid of her and the entire session is spent in crying since LO wants to get out of the high chair. What did speech therapy entail for you? What did they do week after week?

[Anonymous]

Anonymous wrote:OP. Thank you for sharing. It is excruciating. I get about 4-5 hrs of sleep since I also work full time from home. We see an SLP for feeding - been to 10 sessions so far and all she does is encourage LO to feed - and LO is deathly afraid of her and the entire session is spent in crying since LO wants to get out of the high chair. What did speech therapy entail for you? What did they do week after week?

Not good. The SLP should not be working on feeding directly. She should be working on the muscles and the mouth. With chew sticks, with buzzy teethers, with articulation games. He should not be in a high chair, it should be all fun and games for him, blowing bubbles and spinning pinwheels and dancing around. This is a bad speech therapist.

[Anonymous]

Yes, I would shop around for a different SLP or OT.

Therapy needs to be fun not traumatic for a kid. Yes, there will always be something a kid is reluctant or doesn't want to do, but if after an initial period, they shouldn't be this stressed.

[Anonymous]

Www.Speechkids.org and see Gabriele. She was fabulous working with a 15 mo old. That child LOVED her and so did the other children in the class. Gabriele will worn at home but also at childcare so you can work. And provides daily notes of all sessions so parents are kept in the loop.

[Anonymous]

Se oral motor specialist we saw for my
Kiddo with hypotonia did
A lot to make his muscles stronger. A lot with food placement in different parts of the mouth

[Anonymous]

OP. I had no idea this therapist was bad. She makes me bring foods and shoves it in LO's mouth while trying to distract but most of it is spent crying because sometimes LO is just not hungry. Any other recommendations for therapists very welcome.

[Anonymous]

Although it is not uncommon for the ST to ask you to bring familiar food from home, she shouldn't be shoving it in LO's mouth. Where do you live OP? Have you been evaluated by Infants and Toddlers to get service?