***lstaylor***

TheShellSeeker

I'm sorry to read that you're still having problems with feeding.  I am curious...how long did they give before it was determined that they boys were not making progress?  The reason why I ask is that DS is now seeing a feeding therapist (started 3 weeks ago) and in the past 3 weeks, I haven't noticed any change as to how he deals with solids.  Maybe I'm expecting something to happen too quickly?  The main problem is his strong gag reflex when anything hits his tongue.  TIA!

 

LUCKY41010

Can I BUTT in? Cooper had the same problem started @ 4 months.. I started nocticing a difference in 2-3 weeks..What are they having you do with him at home??

TheShellSeeker

LUCKY41010:

Can I BUTT in? Cooper had the same problem started @ 4 months.. I started nocticing a difference in 2-3 weeks..What are they having you do with him at home??

Sure!  So far, we've only had one session with the feeding therapist (and it was an evaluation) but she showed us how to do "tastings" with him.  I put him in his highchair and then ask him to open (his mouth) and then I place a drop or two of baby food (it's actually oatmeal mixed with formula and baby food for flavor - it's thin) on his lips with a spoon and then lots of praise.  We're supposed to work up to eventually getting the spoon in his mouth but we're not there yet.  Whenever the food makes it's way from the lips into his mouth at all, he gags and spits up. 

It is an improvement over what we were doing before the FT visit -  up until then if anything even got on his lips he gagged and spit-up.  However, I haven't seen much difference in the last 3 weeks and he's learning that this isn't much fun.  Even though I praise and try to make it fun, by the last tasting (we do 5 times and two sessions a day) he won't open his mouth hardly at all.  Sometimes he gags on the smell, too. 

I have no idea what to expect when it comes to making progress.  I suppose I'll as the FT next week when we see her for the next session. 

What did you do with Cooper to make progress? 

lstaylor73

Our feeding aversion started with pain from severe reflux/GERD and once we had the feeding tubes put in they became completely adverse to eating ANYTHING by mouth except their paci's.  We've been working with an OT through EI since December of 2008 and started outpatient OT and Speech with the feeding clinic in June, with very little success.  Our biggest hurdle was getting the boys stranger anxiety to calm down.  We are better but not perfect, especially not in new situations with new people.  They have had about 14 sessions with the OT and Speech from the feeding clinic and now that they are better with the anxiety they feel they are ready to transition to the big boot camp program.  They have had lots of improvement followed by lots of steps back.  It is a far slower process than any other type of therapy.  I don't know if that answers your question.  Don't beat yourself up over progress any time soon, it will happen when he's ready.  You will have lots of ups and downs, just like in the NICU. 

Let me know what other questions you have?

TheShellSeeker

lstaylor73:

Our feeding aversion started with pain from severe reflux/GERD and once we had the feeding tubes put in they became completely adverse to eating ANYTHING by mouth except their paci's.  We've been working with an OT through EI since December of 2008 and started outpatient OT and Speech with the feeding clinic in June, with very little success.  Our biggest hurdle was getting the boys stranger anxiety to calm down.  We are better but not perfect, especially not in new situations with new people.  They have had about 14 sessions with the OT and Speech from the feeding clinic and now that they are better with the anxiety they feel they are ready to transition to the big boot camp program.  They have had lots of improvement followed by lots of steps back.  It is a far slower process than any other type of therapy.  I don't know if that answers your question.  Don't beat yourself up over progress any time soon, it will happen when he's ready.  You will have lots of ups and downs, just like in the NICU. 

Let me know what other questions you have?

Thank you for sharing your experiences.  We've had problems feeding DS almost his entire life thanks to reflux.  It's still hard bottle-feeding him but we manage.  I think feeding in general is looked upon as negative by DS so that doesn't help any.  I don't know why or how he managed to get this gag reflex.  It's really hard having a baby with feeding issues.  Thank you for your encouragement.  I fear we have an extremely long road ahead of us.

 

LUCKY41010

We ended up seeing a speech path. that specialized in feedings..Are they having your Son play with textured toys??? Does he take/like a pacifier??

Our first appointment all the S.P. was touch Coop's face and she started by like poking his cheek and went closer to his mouth the minute he got defensive she would stop. She would then bring some toys for him to play with and try to have him put the toy to his mouth.

Also how long are his appt?

E-mail me anytime. I will try and think tonight of other things they tried..

Lucky41010@aol.com

LUCKY41010

 bristle buddy first years

Sassy fish 

In the beginning he would gag with anything in his mouth then after time he would be fine..Also have him play with a spoon. 

Here are some of the textured toys that at first Cooper hated and after a few weeks he would chew away at them..

 

preemieparent

ShellSeeker - I would def. wait until you start seeing the FT regularly.  When they try to implement new ideas and approaches it takes regular work before improvement is seen.

With what you are doing - have you tried any other flavors?   Perhaps your LO would be more interested with something less bland.  Babies taste buds are underdeveloped so things that are spicy, sour, sweet, etc. can be very good for them.  You have to experiment to see what they like best.   Start small so anything new is overpowering but perhaps that might help. 

TheShellSeeker

LUCKY41010:

We ended up seeing a speech path. that specialized in feedings..Are they having your Son play with textured toys??? Does he take/like a pacifier??

Our first appointment all the S.P. was touch Coop's face and she started by like poking his cheek and went closer to his mouth the minute he got defensive she would stop. She would then bring some toys for him to play with and try to have him put the toy to his mouth.

Also how long are his appt?

E-mail me anytime. I will try and think tonight of other things they tried..

Lucky41010@aol.com

Lucky....thank you for all of the info!   DS never took a pacifier....he would only suck on it for about 10 seconds and spit-it out.  He does like to gum/chew on various toys, though.  I find it interesting that this doesn't seem to invoke his gag reflex at all.   He will also gum my fingers and particularly cloth - burp cloths, clothes, etc.    Thank you for posting some toys.  I will ask the FT about getting some of these.  We see her again on Wed. and will see her every 2 weeks.  The appt is 50 minutes long.

We'll see how it goes on Wed.  When we saw her (the feeding therapist) for the initial evaluation, I wasn't impressed with her but I am giving her another shot since she seems very interested in DS and wanting to help us immediately.  And, goodness knows, we need it asap.  The feeding situation with him is bad.

 

TheShellSeeker

preemieparent:

ShellSeeker - I would def. wait until you start seeing the FT regularly.  When they try to implement new ideas and approaches it takes regular work before improvement is seen.

With what you are doing - have you tried any other flavors?   Perhaps your LO would be more interested with something less bland.  Babies taste buds are underdeveloped so things that are spicy, sour, sweet, etc. can be very good for them.  You have to experiment to see what they like best.   Start small so anything new is overpowering but perhaps that might help. 

pp,  we will see the feeding therapist regularly starting this coming Wed, so I'll ask her at the appt about the toys.  When it comes to the solids, I mix oatmeal with various baby foods - so far we've tried apple, banana, carrots, and pears.  I doubt that he's actually tasted much of these because once it gets into his mouth, it gags him and he spits up.  However, I imagine he probably smells them while a dab is on his lips.  I have not done any spicy sour sweet type stuff.   We did give him birthday cake at his party, but the smell caused him to gag and spit-up.  He never put any to his lips or tried to eat it.  Interestingly, he didn't seem too happy at having it on his hands, either. 

I was googling  yesterday (yeah, I know - bad bad) and ran into a site about sensory disorders and it talked about feeding and oral problems.  The thought never occurred to me before but perhaps this is what's going on.  I'll also as the FT about this.

 

LUCKY41010

another thought have you tried vanilla yogurt?? When my ds was starting to eat he loved yogurt I know there is no texture to it but after a little while we would switch spoons of yogurt and applesauce.

TheShellSeeker

LUCKY41010:

another thought have you tried vanilla yogurt?? When my ds was starting to eat he loved yogurt I know there is no texture to it but after a little while we would switch spoons of yogurt and applesauce.

Nope, haven't tried yogurt yet.  I'd be surprised if he could deal with it - solids of any kind (even runny) make him gag.  It might be worth a try, though.