[mommamarci]

Anyone out there with kiddos with sensory issues that have led to feeding problems? I am feeling very isolated. I have no one to talk to about Cameron's issues. Therapy did not go well today and I just need support from other moms (or dads) who have been there, done that. (And I don't feel I should share all his stuff publicly...)

Thanks!

[shy_bear]

Let me know if you want to share...I can relate!!!

[atouchofheaven]

hi,
my child doesn't have huge sensory issues but some. he was born with cleft lip and palate so it does affect his eating. but, my mom is an OT and i grew up working with her with feeding issues and sensory disorders. did you have specific questions or just need support?

i'm sorry you are so frusterated. that must be very hard. i know it hits a certain nerve when you see your child having diffulties with eating. i can't say i've been there done that specifically with this issue. but i'm sending hugs your way.

[mommamarci]

Well, I have decided my concerns are more important right now than keeping everything confidential, so here goes: Cameron has severe sensory / feeding issues. He is 17 months old and still on baby food. Mostly 2nd foods. He can tolerate the 3rd foods that are completely pureed (apples, bananas, pears, etc.) Nothing with chunks. When he is forcefed a PIECE (Not even whole, cut into at least 3 pieces) of a Gerber puff, he gags and vomits. Every time. His OT made some comments this morning kind of hinting at the lack of progress being my fault because I am just not trying hard enough. So, she says we need to buckle down and fix this. She wants me to cut all baby food, reduce his liquid intake (to no more than 20 ounces per day), and let him be hungry. I should feed him thickened yogurt or runny oatmeal for breakfast, smashed fruits and vegetables or slightly pureed soups for lunch. (She suggested ravioli, vegetable soup, etc.) Snacks should be cheerios, goldfish, etc. And if he does not eat, make him wait several hours until the next meal. He will eventually get so hungry he will eat whatever we try. If he gags, we have to tilt his head up, rub his neck, etc. Do whatever we can to make him not gag. Here is the part I am really struggling with: when he pukes, we have to make him keep it in his mouth and swallow it. Kids hate the taste of their puke (Umm, who doesn't??) so after enough times he will learn he does not like it and stop puking.

Does this sound extreme? Any OT's out there that have reccommended this method?

Thanks!

[BrandyHagz]

That sounds a LOT like abuse to me.

What if he breathes it in?

ACK!

I'd ask your Dr. before forcing a child to hold vomit...the chances of them drowning in it would be to great for me personally.

I've never heard of such a thing...we never had food/consumption issues...but I know when we were dealing with other things, I didn't hesitate to find another provider if I felt the OT wasn't treating Jerrett with his best interest at heart (rather than her success rate!)

[Mommy24]

Marci, WOW! I have a son who went through OT and PT, and I remember thinking many times that the things they wanted me to do with him seemed so harsh, but if it was going to help him, I HAD to do it. But I must say, the puking thing, seems so wrong to me. I personally could not do it.

Are you able to get another OT for a second opinion? I am sorry you are having to deal with this (((hugs)))

[shy_bear]

I also would consult my doc. and start looking for a new OT. Our PT and OT are wonderful!!!! I can not say enough kind things about them and how helpful they have been. I think this is the kind of relationship you should have with these professionals; after all they are dealing with YOUR child. I assume you have had a swallow study etc. done??? Our son has a very "good" gag reflex..we have been given several toys by the therapist that we use to massage his throat and mouth to get the gag relex to move back. Are they doing anything like this for your son?

[mommamarci]

Originally Posted by shy_bear

I assume you have had a swallow study etc. done??? Our son has a very "good" gag reflex..we have been given several toys by the therapist that we use to massage his throat and mouth to get the gag relex to move back. Are they doing anything like this for your son?

Yes, we have had a swallow study done. The person doing it said it was one of the most severe gag issues he had ever seen. He told me to refer people to him if they don't believe me. We have toys also like massaging teethers.

My husband was unable to be there for therapy today and got home a little bit ago. He fed Cameron dinner. He has decided we will follow her advice for one meal a day. I will continue feeding him breakfast and lunch with baby food. Snacks, we will try Cheerios and stuff. Then at dinner, we will give him the purreed and smashed foods. I know the OT will be unahppy with this because she stressed that we have to let him get hungry enough that he will eat whatever we feed him.

I have been in the bedroom with the TV turned way up so I could not hear Cameron crying for the past half hour. It is just not worth it...

[kelceesmom]

Oh Marci,
I am sorry you have to go thru all of this. I too would be very careful with the vomiting. My biggest concern would aspirating. Are you able to get another opinion on a course of action for him or do you have to stick with OT? Kelcee had slight sensory issues but nothing like you are going thru. Lots of ((((hugs)))) going your way.

[Cobb]

Hi Marci, I just spent the last five minutes pacing around my kitchen venting in my head at your OT.

First, my background. I have a 4 year old daughter who had a medical condition at birth that prevented her from eating orally. By the time I met her at 12 mons, her oral aversion was severe and she would scream anytime someone would touch her lips. We were able to really begin working on eating at about 18 mons. In addition to her oral aversion/sensory issues, she like your son had an extreme gag reflux. It has been a LONG journey, but she is finally an official eater and we've begun decreasing her tube feeds as she increases the calories she's able to consume during the day.

My two year old also had some sensory issues and eating challenges. We have an amazing OT who helped us work through C's issues at an earlier age and prevent the problems her sister had.

I guess what I want you to know is that we really have dealt with what your going through and we've found successful treatment. So maybe I'll have a touch of credibility when I say...

RUN! RUN! RUN! from this OT and find someone who knows what they are doing!!!

Your son is doing one thing really well right now... getting enough calories to grow! She thinks your not trying hard enough... pffffttt! Despite his aversion and gag reflex you are able to get him to eat orally. Seriously, I know the worry that you're going through with your son, but you really need to acknowledge how well you've done and give yourself a huge pat on the back!!!

If you push him too hard before he's ready... make him swallow his vomit... etc you run the risk of increasing his oral defensiveness. Think of it this way, every bad oral experience he has will re-enforce that this eating thing is unpleasant and scary, so why would he ever want to try it again. I really fear that if you follow this therapists techniques your son will go backwards and might possibly refuse even baby food.

I have more to add, but it's getting late here. I'll try to get back tomorrow and will also get you info on an online support group that deals with these issues.

Hang in there!
Cobb

[dragonfly1234]

Marci I can't give you advice but only (((((hug))))) for being a good mom. Everyone else has given you the advice you need. Just continue being the great mom you are and trust what you think is right!

[BlessedBe]

mommamarci,

My son, now 27 months, has sensory issues. He has strong oral aversions and has been in regular OT and PT for a year. So, I can totally relate.

Our first therapist pretty much reprimanded me when I demonstrated a feeding with my son in front of her when he was 9 months old. She told me I needed to quit my job, stay at home, and devote my time to helping him overcome this. I was unable to do that. She made me feel like such a failure as a mother. I've since found some wonderful therapists who work with me and help me to help my son. Not just sit there and criticize.

Our son was born with a birth defect affecting his esophagus and it was repaired at three days of age. It left him with such severe reflux that it began to affect his desire to eat. We have that under control now, but OT/PT has noticed that his tongue/jaw coordination is off which is contributing to his sensory issues.

At 27 months, my son still prefers foods that he does not have to chew. He has a very limited number of foods he eats. Let's just say that milk and yogurt (and multivitamin drops) are helping him to thrive. His weight has him nearly dangling off the bottom of the percentile chart. But, he is making progress.

Some things his therapists do and we do at home to help him are:

Use "therapy boxes" - these are rubbermaid containers filled with dry beans and another with rice. We hide toys in them and encourage him to touch textures he doesn't really care to.

His therapists recommend using food for play - with no requirement to eat. For example, we take raisins and put them in cups and pour them out of cups. I boil noodles, drain them and use them to play with (they're sticky so we're working on getting him tolerate a texture he despises). Sometimes, he even puts these foods to his mouth which is a huge accomplishment even if he's not eating them yet!

The goal is to get him to touch the food first. Then we will work on getting him to put it to his mouth later.

Our therapist is firm that we should never force him to try anything. Her belief is that infants/toddlers/children have control over one thing in their lives and that is eating. If it becomes a battle of wills, the child will win. Every. Time.

I am so sorry that you are faced with this and then to have a therapist who is pushing some questionable techniques on you and your son. I recommend that you look for another therapist.

Take care and just know that you're not alone! PM me if you ever need to.

BlessedBe

[angelkisses0102]

OMG...all I can say about that OT...other than find a new one.

Have you been to a feeding clinic? I know many people that have utilized them...maybe ask on the Russian boards here if you haven't been to one yet. Also, does he have other sensory issues? I know as we progress through DS's sensory stuff...it impacts all of his senses..does that make any sense?

My son has oral sensory issues and oral aversions that still impact what he eats. Luckily we have no issue with the gag reflex so I can not imagine. We did have attachment issues which manifested themselves through food control as well.

The biggest thing I have learned is to do what I know works and not just blindly trust anyone else...if what a *professional* tells you doesn't sit right...move on. My son still eats very limited amounts of food with almost no variety. It is celebrated if a piece of new food even makes it into his hand...let alone onto his lips..and it is a huge event if he actually places a new food into his mouth...forget actually chewing and swallowing it. He has some visual issues as well and he will stop taking a food if the outside packaging changes and he sees it...

I would listen to Cobb and BlessedBe and any other parent who has lived this...the best medical advice I have gotten for my son has been through other moms and forums and support groups.

All the best and may you find someone who can help you both get through this...

[Hollygirl]

I don't have any advice for you. I just wanted to send you some ((((((hugs))))))! I am sorry that you are experiencing this obstacle right now. Keep your head up and remember to take some "you" time. You sound like you are a great, caring, mommy and you derserve time to vent, re-group and relax....

[mommamarci]

Thanks all! I am currently waiting for a call back from the ped. I just spoke with the nurse about half an hour ago. She seemed shocked. Said the ped would probably want to speak to me directly.

For now, we are changing nothing. Caeron was completely lethargic last night. The kid who usually gets the entire bathroom wet during bath just sat there and did not play at all. He did not get a single toy out all night. We finally gave him baby food and more milk and he returned to his usual outgoing self. I have had to force the first bite of baby food into his mouth at every meal / snack today because he thinks we are trying to trick him. So, for now, we stay put. Once I hear back from the ped, we will re-evaluate and decide what steps to take next.

Thanks for all the support and advice. I, of course, already blame myself. (Don't all parents think they must have done something when their kid has an issue??) So, it was nice to hear from others that I was not being a bad and paranoid mom! I will keep you all posted.