Hi Ladies - Intro

[conradtn]

I think I'm in the right place.   (oh gosh this got long - sorry!)

I haven't posted on this board in a very long time.  My daughter was born in Aug 2013 and was a 32 weeker.  She was in the hospital 25 days and then we came home and were on self-quarantine.  RSV season was about to start and I wasn't about to let her get sick (if I could help it).

When she turned a year old we didn't see our regular pediatrician (she was on maternity leave) and of course they start on all the development milestones.  We were also 2 months behind, right on her adjusted age.  Well, she gets to food and I say we're still on bottles and purees. "what?! She should be eating what you're eating!"  Huh, so I go buy stage 3 baby food which has texture and she starts gagging and throwing up!

She also has Laryngomalacia, so I assumed she was gagging because of that. Her ENT said no way and suggested a swallow study.  So we got the pediatrician's approval and we learned that (at the time) when the texture of yogurt hit the back of her mouth she gagged and threw up.   So we started our long journey of Speech Therapy.  My daughter was diagnosed with Sensory Processing Disorder and Oral Aversion.  She just turned 3, so our Early Intervention has ended and our school system doesn't cover feeding.  We were discharged from OT because she's doing better with touching different textures.  She's still not chewing though, so it's a lot of mac n cheese, yogurt, mashed potatoes, etc.

So here we are! My little 3 year old still wears 18m-2T clothes and is itty bitty, but full of energy!

[brachysira]

We have a lot in common! DD was a 32 weeker and a Jan 13 baby. She is the pickiest eater, and gags on meat, but she's been eating fruit pieces since she was 6 months old. She got some OT because she's not very independent (won't get dressed, etc.) and they said they'd work on eating, but they never did, and she's never been diagnosed with anything. She does chew, and is tall and heavy, so her pedi isn't worried. It doesn't sound quite like what you've got going on, and it sucks that they let you go. Does she take a vitamin?

And my DS had laryngomalacia. He's 2, and doesn't sound like he has it anyone, and we've never been back to the ENT because they have your wait for 3 hours and I just decided told the pedi that we weren't going, and she was like, fine. He had a major problem with the breathing and eating, but he's got it now.

[greysonsmom]

conradtn I'm kind of new to this whole world. Still waiting on a developmental pediatrician appointment but my son just turned two and is being treated for sensory processing disorder. Based off his behavior his OT believes that's what it is. He is not talking, not sure if this is unrelated or has anything to do with it. Is your daughter talking?

[spooko]

Welcome

[conradtn]

Sept 19, 2016 16:29:31 GMT -5 greysonsmom said:

conradtn I'm kind of new to this whole world. Still waiting on a developmental pediatrician appointment but my son just turned two and is being treated for sensory processing disorder. Based off his behavior his OT believes that's what it is. He is not talking, not sure if this is unrelated or has anything to do with it. Is your daughter talking?

She is talking, but that doesn't mean it isn't related or not. There are so many aspects to SPD. Have you read Out of Sync Child? 

[conradtn]

Sept 19, 2016 15:25:49 GMT -5 brachysira said:

We have a lot in common! DD was a 32 weeker and a Jan 13 baby. She is the pickiest eater, and gags on meat, but she's been eating fruit pieces since she was 6 months old. She got some OT because she's not very independent (won't get dressed, etc.) and they said they'd work on eating, but they never did, and she's never been diagnosed with anything. She does chew, and is tall and heavy, so her pedi isn't worried. It doesn't sound quite like what you've got going on, and it sucks that they let you go. Does she take a vitamin?

And my DS had laryngomalacia. He's 2, and doesn't sound like he has it anyone, and we've never been back to the ENT because they have your wait for 3 hours and I just decided told the pedi that we weren't going, and she was like, fine. He had a major problem with the breathing and eating, but he's got it now.

Yes, I still give her the polyvisol that she took in the NICU.  I just put it in her applesauce. Mixing it with fruit, the nutritionist said her body would absorb it better.

By age 2 they usually grow out of the laryngomalacia, so his may have resolved. 

[greysonsmom]

Sept 20, 2016 8:40:34 GMT -5 conradtn said:

Sept 19, 2016 16:29:31 GMT -5 greysonsmom said:

conradtn I'm kind of new to this whole world. Still waiting on a developmental pediatrician appointment but my son just turned two and is being treated for sensory processing disorder. Based off his behavior his OT believes that's what it is. He is not talking, not sure if this is unrelated or has anything to do with it. Is your daughter talking?

She is talking, but that doesn't mean it isn't related or not. There are so many aspects to SPD. Have you read Out of Sync Child? 

I haven't, I will check that out. Thank you.

[chickypoo2468]

Welcome! Laryngomalacia here too, I think he grew out of it already but we're still working on the eating thing. Actually our SC is coming in a few hours so I can sign the paperwork. But anyway.... Glad to have you!

[conradtn]

Sept 20, 2016 10:48:17 GMT -5 chickypoo2468 said:

Welcome! Laryngomalacia here too, I think he grew out of it already but we're still working on the eating thing. Actually our SC is coming in a few hours so I can sign the paperwork. But anyway.... Glad to have you!

Thank you!

I think our laryngomalacia is still lingering a little bit.  I only really hear it when she's either really upset or really excited.  Not like it used to be though! 

[numbbears]

Welcome!

[cam]

Welcome.

[chickypoo2468]

Sept 20, 2016 11:01:34 GMT -5 conradtn said:

Sept 20, 2016 10:48:17 GMT -5 chickypoo2468 said:

Welcome! Laryngomalacia here too, I think he grew out of it already but we're still working on the eating thing. Actually our SC is coming in a few hours so I can sign the paperwork. But anyway.... Glad to have you!

Thank you!

I think our laryngomalacia is still lingering a little bit.  I only really hear it when she's either really upset or really excited.  Not like it used to be though! 

That's good! It can be such a scary sounding thing!

[brachysira]

conradtn, I used to give her the polyvisol for quite a while, but now she just has a Flintstones... But giant kid here, so no one really seems to worry about her nutrition except me.

[conradtn]

Sept 20, 2016 13:31:17 GMT -5 brachysira said:

conradtn , I used to give her the polyvisol for quite a while, but now she just has a Flintstones... But giant kid here, so no one really seems to worry about her nutrition except me.

I give her the polyvisol because she can't chew and I can just squirt it in her applesauce.

[mamaturtle]

Welcome to our board!

[mrsbuttinski]

Hi and welcome.

[pipsqueak]

Welcome to the board.

[Deleted]

Hello, welcome.

[freezorburn]

Welcome!

[mcribster]

welcome to the board.

[spring78]

Hi there. I have 31+6 twins (so close to 32 weeks!) now 11 and a half months. My DD is doing just fine. She loves to eat! Cereal, puree, puffs, finger foods, you name it. She likes all flavors, all types. My DS, on the other hand, developed a severe oral aversion while in the hospital for open heart surgery. He has accepted no food orally in nearly 4 months. We are working with Speech, a feeding specialist and a dietician to try to get him figured out. We just had to have a G-tube placed this week. No diagnosis yet other than severe oral aversion, but I wonder about sensory issues as he hated food play for a long time (willing to touch cereal now, but that took some work) and he could not stand the feel of sand at the beach this summer.

[conradtn]

Sept 22, 2016 11:29:31 GMT -5 spring78 said:

Hi there. I have 31+6 twins (so close to 32 weeks!) now 11 and a half months. My DD is doing just fine. She loves to eat! Cereal, puree, puffs, finger foods, you name it. She likes all flavors, all types. My DS, on the other hand, developed a severe oral aversion while in the hospital for open heart surgery. He has accepted no food orally in nearly 4 months. We are working with Speech, a feeding specialist and a dietician to try to get him figured out. We just had to have a G-tube placed this week. No diagnosis yet other than severe oral aversion, but I wonder about sensory issues as he hated food play for a long time (willing to touch cereal now, but that took some work) and he could not stand the feel of sand at the beach this summer.

My daughter would NEVER pickup anything off the floor and put it in her mouth. As a new mom I was like "this is awesome! She's not putting crap in her mouth" little did I know!  Also her first trip to the beach soft sand really freaked her out. She handled the firm/wet sand much better.  Sounds like my daughter. She's an "avoider" and OT really helped a lot.

Before her meals we had sensory bins that she would play in.  We'd start with rice or beans and then go towards playdough until we got to whipped cream.  But when she first started OT she couldn't stand touching rice.  I also would brush her before each meal.   Has he been evaluated by early intervention?

[spring78]

Sept 22, 2016 14:42:08 GMT -5 conradtn said:

Sept 22, 2016 11:29:31 GMT -5 spring78 said:

Hi there. I have 31+6 twins (so close to 32 weeks!) now 11 and a half months. My DD is doing just fine. She loves to eat! Cereal, puree, puffs, finger foods, you name it. She likes all flavors, all types. My DS, on the other hand, developed a severe oral aversion while in the hospital for open heart surgery. He has accepted no food orally in nearly 4 months. We are working with Speech, a feeding specialist and a dietician to try to get him figured out. We just had to have a G-tube placed this week. No diagnosis yet other than severe oral aversion, but I wonder about sensory issues as he hated food play for a long time (willing to touch cereal now, but that took some work) and he could not stand the feel of sand at the beach this summer.

My daughter would NEVER pickup anything off the floor and put it in her mouHospi new mom I was like "this is awesome! She's not putting crap in her mouth" little did I know!  Also her first trip to the beach soft sand really freaked her out. She handled the firm/wet sand much better.  Sounds like my daughter. She's an "avoider" and OT really helped a lot.

Before her meals we had sensory bins that she would play in.  We'd start with rice or beans and then go towards playdough until we got to whipped cream.  But when she first started OT she couldn't stand touching rice.  I also would brush her before each meal.   Has he been evaluated by early intervention?

Yes. He is being seen by PT and a feeding specialist through our state's early intervention program, as well as a speech therapist at the Children's Hospital. He was seeing an OT, but they switchers her out for the one specializing in feeding issues.

[macchiatto]

Welcome!
My son had feeding therapy. We were late getting him into EI; by the time everything got lined up he'd only had 6 weeks to 3 months of the various therapies (PT, OT--including for SPD, and feeding therapy with an SLP) before he aged out. He did get an IEP and some limited in-home services from our school district but b/c he'd just started with the other therapists and was already making good progress with them, we decided to continue on with all three privately. Would that be an option? Not sure what your ins coverage is like. Our Blue Cross covered part of all 3 and thankfully Leo had Medicaid that covered the rest.

[conradtn]

Sept 29, 2016 19:54:48 GMT -5 macchiatto said:

Welcome!
My son had feeding therapy. We were late getting him into EI; by the time everything got lined up he'd only had 6 weeks to 3 months of the various therapies (PT, OT--including for SPD, and feeding therapy with an SLP) before he aged out. He did get an IEP and some limited in-home services from our school district but b/c he'd just started with the other therapists and was already making good progress with them, we decided to continue on with all three privately. Would that be an option? Not sure what your ins coverage is like. Our Blue Cross covered part of all 3 and thankfully Leo had Medicaid that covered the rest.

Thankfully private insurance will cover.  We just have to weigh the costs now.  DH's insurance is cheaper (less out of the paycheck), but we only get 26 visits and we pay 100% until she reaches her deductible.  Or we use mine which would be way more out of my paycheck, but gives 60 visits at $25/visit.