Denied feeding therapy

DS is 27 months old and has a SPD and speech delay. He gets OT and ST 2X a week for 45 minutes each session. He is doing great in speech and the therapist doesn't want to blow that by feeding him and have him withdraw from speech. The OT is working on his SPD issues. Trying to desensitize his hands.. The problem is we can't get anything into his mouth. Both therapists have talked to our coordinator who says it is behavioral and they won't give him a feeding therapist. He only eats pancakes, yogurt, pureed fruits, some fresh fruit, and crunch foods. Nothing in between.. He gags and shakes and shivers when he touches something that is new. Then he cries and won't eat anything.. It has been over a year now.. Nothing has changed!!! He started therapy in Sept. His speech has come a long way... I am looking into outside help, but it is going to be expensive and we just don't have the money right now... He has gained about a pound since 21 months. It is so frustrating to see him want to eat but he just can't do it..
Has anyone fought for feeding therapy? Is there a place we can go that will set up a payment plan for us.. I am so drained..

Re: Denied feeding therapy

I am sooo sorry you're going through this. You know Mason's issues too.
He was doing somewhat better with eating, but being away just a few days set it back.
A friend of mine who has had major issues with her DD gave me advise. Her DD was tube fed. Her lungs were small when she was born and I want to say they were on the outside or something. She never went into detail. She said they stayed at the RM House for pretty much her first years with all the surgeries.
Only one feeding therapist worked and made her chew. I know each kid is different and what works for one will not work for others, but bribery does work (when he's calm)
Put on his fav show or take his fav book. I use my Ipad too. I put pieces of food and I tell him to take a bite and I will unpause the TV, turn the page in the book or let him play a game on the Ipad. Then wait for him to chew, chew and then pause or take away the Ipad.
Does it work all the time? No, Mason lives on yogurt, oatmeal, crackers and PB sandwiches
What about taking what he likes and changing it. I know Mason will have PB so I melted cheese on a sandwich.
Of course with Mas what works one day won't work another, but at least he's trying.
We only found an out of network feeding therapist too and it was too pricey. $300 for one meeting!
That was all we could afford so his speech therapist and myself act as a feeding therapist for him.
I was a very picky eater as a kid so who knows. Maybe he'll turn around... one day.

Re: Denied feeding therapy

How on earth can the coordinator determine this as "behaviorial" ? Coordinators are not evaluators ?

RIDICULOUS !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

It's also very frustrating because every OT I meet seems to put Oral Motor concerns off on SLPs and SLPs do the same. The bottom line is, unless either of these types of therapists have had intense training in oral motor, they don't know how to approach it.

I would look into hospital or university settings because they probably take credit cards (if that could help. You can also look into

www.beckmanoralmotor.com
it's a really informative website and you can possibly locate therapists from it.

Message edited 2/3/2012 1:25:31 PM.

Re: Denied feeding therapy

My DS has been "eating" nothing but Pediasure for the past 8 months & we too were denied feeding therapy through EI & currently through CPSE.

We did get him evaluated through St. Mary's & he's on the waitlist for inpatient. Our feeding therapist recently left (outpatient) for St. Mary's & so we decided to go someplace much closer to home.

We just started through Good Sam & we like what we see so far. He also has SPD & they start the session in the sensory gym & then proceed to work on oral motor exercises, followed by feeding (trying to get him to eat something), putting spoon to mouth, etc.

Like Erica the last therapist used bribes & would shut the TV off when he didn't comply. One of the biggest motivators was her IPAD.

I started a page on FB called the Non Eating Child where parents share their struggles/stories.

Re: Denied feeding therapy

Thanks for all the replies... It is so hard and I get so frustrated some days... Last night he was hungry so I made him a waffle. He had eaten 2 of them this week. He looked at it, picked up a piece and then proceeded to shake and dropped it.. I was so upset. We waste so much food...Bribery is just starting to work here so I am going to try it at his next meal... He seems interested in food, but I know he has a problem with it. He has only gained 2 pounds in the last 5 months. I will have to check out some places around where we live..

Re: Denied feeding therapy

What about a nutritionist? If you get a script from your doctor, you can request one from EI. They can be so helpful finding ways to add calories to meals, and ways to present food. They are a real asset. The nutritionist through EI are fantastic because they work with these types of issues you are mentioning.

Re: Denied feeding therapy

One other thing...if you have good health insurance, you can get feed therapy with a speech therapist privately. My health insurance covered it. I used The Therapy Spot. http://thetherapyspot.net/childrens-services-speech.htm

Good Sam's program is intense...it really wasn't what I was expecting, so we used The Therapy Spot and were happier with their approach.

I know a number of people who used them for the same issues. They were really great.

Message edited 2/8/2012 7:33:05 PM.

Re: Denied feeding therapy

If it's behavioral, we HAD TO use bribe. The TV. We don't force feed him. I don't need to make it worst.

It's a constant nightmare!

Re: Denied feeding therapy

Hi, I was wondering, was it a "formal denial" or was it more like the "coordinator did not feel like your DS will get approved for feeding"? Either the Speech or OT, if they have the experience, can work on the feeding issues. You may formally request to have feeding therapy added in your child's IFSP, but a justification form has to be submitted by the current therapists. If it's the SLP, then possible a request to increase the mandate and include feeding therapy. If it's the OT, same thing, a justification letter to be sent to Early Intervention to request for increase in mandate and to add Feeding therapy. An EIOD reviews it, not the service coordinator.

Re: Denied feeding therapy

Thank you everyone... I am going to look into everything.. We have a big meeting coming up and I am going to request that he gets evaluated for feeding therapy.. Both of his therapists say he needs one and they will back me up. I am going to talk to both of them tomorrow to see how I can do it.. Our coordinator doesn't think he needs one.
His eating isn't any better since he started therapy in September. The therapists have some feeding therapy knowledge but I think he needs someone who is just a feeding therapist... One on one....His eating issues aren't all behavioral, he has severe issues with textures. If he gets something past his hands, he will gag and shake and shiver. Upsets him to no end...

Re: Denied feeding therapy

MY nephew who is three years old. Well he used to get ot at home but my other nephew who is five was always in the way,he would not like to eat, he would only eat certain things. well now he goes to the school five days a week, They got him to eat, he cries a little but he knows now just because he cries and gags he still has to eat. its not in long island this is upstate, he also has speech delayed but he talks sometimes, they are working with him. he getting better with everything. they finally are getting him speech because he needs it..i notice a huge change in him, he now eats a lot of different things maybe you can get his ot to work with him that's what my brother did. they helped with breakfast and lunch i guess because he goes to the center five days a week. hope things work out with you

Re: Denied feeding therapy

Are you close to CW Post? It's not individual feeding therapy, but their speech/language group has an AMAZING mommy and me feeding group. The woman who runs it, is nothing short of spectacular, and is extremely helpful. I know she also does evaluations so that if your child is in the group, she could add an evaluation to help with individual services. She has a fb link but if you aren't able to view it, let me know.
GL!





cw post feeding group

Re: Denied feeding therapy

My son had feeding therapy through EI for eating issues that were primarily due to behavioral control and low appetite. He would only eat about 3 different foods and could go days without eating if I let him. Every bite was a huge struggle. He stopped gaining weight and was under the charts, so he was labeled "failure to thrive".

I'm very lucky that we were approved for a feeding therapist and nutritionist through EI, since I know a lot of people in similar situations are denied. I work in the EI field so I'm very knowledgeable about the process which was a big advantage.

I had him evaluated through South shore Speech and Swallowing and they were great and fought for us. I also had "failure to thrive" label working for us, since even though he was not showing any signs of developmental delay, improper growth and nutrition can cause delays down the line if not treated. So, it was not just a medical issue, but a developmental one as well, which needs to be shown for them to justify services.

Good Luck. If I could help in anyway, just let me know. I know how stressful it is.

Re: Denied feeding therapy

My DD is very similar and also has weight gain issues. A lot of agencies don't realize that most SLPs aren't really qualified to work on feeding issues.
If you get your pediatrician to write an order for a feeding eval (I live in NC, so I don't know anyone up there, but message me if you would like me to ask my feeding therapist if she knows someone), your insurance company should cover it...at least for a certain amount of visits.

Re: Denied feeding therapy

Thank you for all of your information...
My son had his IFSP meeting on Thursday. Still got denied for a feeding therapist. They wouldn't even talk about getting him evaluated...
My speech therapist managed to talk them into getting a third day to work solely on feeding. She has some training in feeding. We will see what happens. I am going to see if I can get a note from my pedi. DS is gaining some weight so he won't be labeled failure to thrive. It is the most difficult thing to deal with. For the last 2 days he has only eaten 3 gogurts, 2 fruit pouches, and arrow root cookies.. I don't understand how they can't even evaluate him!!! He has a real problem. The coordinator kept saying he is picky... I was going to knock her on the floor. She gave me tips.. I told her that I have been dealing with this since DS was 13 months old!!! I have tried everything from bribery to just letting him not eat.. (His choice)... We start the 3rd day in March... We are afraid he will get really upset and start to regress with his speech...

Re: Denied feeding therapy

Posted by NewLeaf2012

Thank you for all of your information...
My son had his IFSP meeting on Thursday. Still got denied for a feeding therapist. They wouldn't even talk about getting him evaluated...
My speech therapist managed to talk them into getting a third day to work solely on feeding. She has some training in feeding. We will see what happens. I am going to see if I can get a note from my pedi. DS is gaining some weight so he won't be labeled failure to thrive. It is the most difficult thing to deal with. For the last 2 days he has only eaten 3 gogurts, 2 fruit pouches, and arrow root cookies.. I don't understand how they can't even evaluate him!!! He has a real problem. The coordinator kept saying he is picky... I was going to knock her on the floor. She gave me tips.. I told her that I have been dealing with this since DS was 13 months old!!! I have tried everything from bribery to just letting him not eat.. (His choice)... We start the 3rd day in March... We are afraid he will get really upset and start to regress with his speech...

Re: Denied feeding therapy

Go through your insurance. Most hospitals will have various payment options, including those for financial hardships.

Re: Denied feeding therapy

Try through Insurance! We were denied too..although they took one of DS's speech therapy sessions and are now doing Feeding therapy with it, but thats just gonna hurt his speech and I'm not sure I like that, but anyway..

We are going on Thursday for an eval at Good Sam's program and so far the insurance has approved that and they said they rarely have trouble with insurance denying it.

Good luck!

Re: Denied feeding therapy

Re: Denied feeding therapy

Re: Denied feeding therapy

Thank you. We have the Empire Government plan.. DS got an appointment with his GI on March 5th and she will be able to give me what I need. I left a message with our reg ped, but I haven't heard back from him yet. I will definitely give them a call tomorrow.. Thanks again!!!

Denied feeding therapy

mY twins are 14 months. My one son chokes, gags does it all. He will take a few bites & then throw it on the floor. It seems he is not chewing & just swollowing. We are approvd for feeding & just got his first appt last week. It was a DISASTER. The girl was nice but they say the way he acts is also behaviroal. He cried & screamed for the whole 45 min session. She was having us try bread/butter; bread/jelly, graham cracker (dunked in water to soften) turkey cole cuts (LOVES) He would not eat any bread. She then was hiding the graham cracker in yogurt..that didnt help either. I hope this week is better. His menu right now is macaroni & cheese, pastina, chicken nuggets & sometimes meatball aside from puree foods. He really won't try anythig!!!

Re: Denied feeding therapy

Posted by NewLeaf2012

Thank you. We have the Empire Government plan.. DS got an appointment with his GI on March 5th and she will be able to give me what I need. I left a message with our reg ped, but I haven't heard back from him yet. I will definitely give them a call tomorrow.. Thanks again!!!

Re: Denied feeding therapy

Re: Denied feeding therapy