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#1 of 11 Old 07-27-2013, 06:08 AM - Thread Starter
 
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Anyone done it? We've done all the "regular" therapies for years now, PT, OT, and speech. DS1 is ASD but has physical issues that are currently unknown. We have been told that a genetic mutation he carries is not to blame, but at the end of the day, no one knows anything about it.


Feeding is hit or miss. Very limited food range. He does food jags where it is one food for days/weeks at a time and then he will refuse to eat it again. Sometimes he gets a broader range, still not normal, and sometimes he eats almost nothing for weeks at a time. He tends to only eat a couple times a day. His ability to recognize thirst or hunger is certainly a struggle. We struggle with weight loss. Looking back, now I realize that all of his favorite foods over the years, (he is four) , have been soft foods. Foods that are easy to eat. Starting in April, he started having periods of gagging and vomiting on preferred foods. Once he does that on a food, we can cross it off his list of foods he might be wiling to eat. He also started making noises while he eats at the same time, like a humming noise. Somedays he eats only Popsicles, strawberries, and juice boxes. Right now he is in a hamburger jag because he thinks they are Crabby Patties so we are going with that. Any other food beyond those, he may or not not attempt to eat a couple bites of. He truly doesn't care if he doesn't eat all day.

He is low tone, we struggle with it daily. He has always been a noisy, messy eater and I think he struggles with food placement in his food along with trying to breathe at the same time. Fine motor control to get the food into his mouth is also interesting. I had an intake call yesterday for an intensive feeding therapy clinic. Resources in my area are very limited so anything beyond what we currently do, I would be traveling 350+ miles for. They would want him to do a four week, five time a week, intensive and would require daily OT as well. $$ of course. We would have to charge it, nothing new to us. We are drowning in therapy/medical bills. Living expenses for me across the state and child care for my other three children that would have to stay behind, are going to kill us as well. So the feeding therapy has to be worth it. I know no one can decide that for me but I would love to hear other's experciences.

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#2 of 11 Old 07-27-2013, 09:28 AM
 
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I wanted to respond to you....this was a very upsetting issue for me when my son was very young.  He also had a difficult time "eating".  He ate soft baby food and then table food, put through a blender, mixed with apple sauce, so that he could easily swallow it, until he was almost three.

 

I then "taught" him how to "chew and swallow", my first experience with his "learning style" which to this day, is that things that are hard for him, have to be broken down for him, and explained step by step, and then he can master it.  Basically, I told him, we eat to grow and to have a strong body, we bite with our front teeth, chew with our side teeth, and swish food back and forth on both sides, chewing all the way, until it feels small and mashed, which then, allows us to swallow it.

 

For him, he had poor proprioceptive sense in his jaw.  He couldn't "feel" the food in there, so he needed it smooth, and easy to swallow, for the longest time. 

 

After teaching him to chew and swallow, he could "do" it and started to "eat", meaning chew and swallow, a wide variety of foods, without me blending it up in the blender.  He now seems to have outgrown his sensitivity.  However, I still needed to encourage him to eat to be strong, and I would still supplement his diet with lots of "perfect food" brand predigested food powder out of concern that he didn't get enough nutrients.

 

It's tough to decide what to do about feeding therapy.  We had an early intervention service in our area, that paid for a feeding therapy group at an area children's hospital.  We also had an OT come into the house to help for a time.  Maybe I was just too young, freaked out at the magnitude of the problem, what have you, to truly appreciate the help at the time, but, while he was getting help, I hated it.  It didn't seem helpful (because it wasn't) and it was depressing to me seeing all the children around him in the feeding therapy group who were incredibly impaired.

 

I know I struggled with this, and we didn't have to pay for the service.  Paying for it,  would make it much worse, so I'm afraid I don't have much useful advice. 

 

It turns out that my son's issue with chewing and swallowing is a soft neurological sign and he did get an ASD diagnosis later in his life.  He did outgrow the feeding issues...not without the effort on my part, but, his continuing maturity also took care of the rest.

 

Can you just go with it for a time?  Is he more willing to eat what everyone else eats if it is put in a blender with lots of apple sauce, or ketchup etc to soften it and make it easy to swallow?  I used to whip up avocado in a blender so it was as smooth as frosting, and add banana.  Great nutrients and fat.  I used to put flax and coconut oils in pudding.  I got very crafty about adding calories and nutrients and fats into food.  I also used to tell him that it was "body strong" medicine...that food is like medicine.  We need to eat to be healthy. 

 

HUGE work and very emotional too, but for me, food is very tied to being a good mom....can we nourish our children and help them grow....so I can definately relate to this. 

 

I would also, if I were you, try to figure out further, any other reasons for his low tone.  My child didn't have low tone, but sensory issues.  The low tone is worrisome, and maybe other parents here can weigh in with more experience in this.  I've heard some parents on this board talk about metabolic problems being the root of low tone.  Forgive me if you've already explored this as well.  Good luck and good wishes in your decision.
 

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#3 of 11 Old 07-28-2013, 07:03 AM - Thread Starter
 
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Living life, thank you for sharing!! I am in transit across the state this morning therefore this will be brief.

We have no idea about the low tone. He still W sits constantly to provide stability. We have had numerous work ups. Been to a high regarded Children's Hospital, he has several specialists there. It may be related to his genetic mutation, it may not. We have had numerous consults with orthopedic docs about that state of his hips and feet. Surgery is not advised at this point. We just started back with weekly PT after a several month break. Basically, I have spent a fortune between all his testing, evals, consults, and then the five hours of therapy a week he does privately. Everyone always tells me that he is a mystery, no one diagnosis covers his issues. He may have several. I don't have any more money to keep searching for the needle in the haystack. My money currently, is best served by paying for his therapies. Which bites!

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#4 of 11 Old 07-28-2013, 07:09 AM - Thread Starter
 
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And hit the wrong button... He won't touch blended food with a ten foot pole. If the food is even cut slightly different or a different color, he won't eat. It makes it so difficult because there are only so many foods, he hasn't choked on and that he can eat and then we have to make sure they are presented "perfect" or else risk losing his fleeting interest in any food. That is where the ASD comes in I guess and then all the pain food causes him, he would rather just starve. He is wasting away. My one year old and DS1 now wear the same waist size of pants.

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#5 of 11 Old 07-28-2013, 04:06 PM
 
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How does he learn?  Do his delays include cognitive functioning, or, does he understand your explanations and respond to rewards?  I don't want to be down on feeding therapy when it could be the answer for you, especially since he sounds like he is so in need of some kind of help, but of course, you want to make sure it really helps.  Does he at least drink any calories?  Will he do smoothies?

 

What feeding therapy looked like for us, was that it consisted of children encouraged to "wake up their mouths"....chewing on ice, licking hot flavorful allspice, catching o cereal with their tongue, pursing their lips to blow bubbles, chewing gum etc.  This program ran children through these basic exercises and then parents were encouraged to do the exercises at home.  In my experience with the program it didn't help him chew and swallow.  The only thing that ultimately helped him was me, standing close to him, and telling him, how to chew, by breaking it down for him in small explanations, then, explaining concretely why people "have" to eat.  His enjoyment of food came later, and he does now thoroughly love food. 

 

Maybe if you knew more about the feeding group, their success rate with children who seem to have similar issues to your son, you may feel more comfortable making the commitment.  They may also, since it is your money on the line, be willing to allow you to sit in on a session and observe, or attend a free session with him, to see how he responds. Maybe they are willing to send an OT to your home to assess whether the group is a good fit.

I hope you can figure out what's best...
 

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#6 of 11 Old 07-28-2013, 04:11 PM
 
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And, boy, don't you wish sometimes you were given a manual when they were born....that tells you the right decisions to make ;)  You are certainly doing so much that's right for your child even without the manual!

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#7 of 11 Old 07-29-2013, 12:04 PM
 
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I don't have any advice for you, but I can sympathize. My two kids are extremely picky eaters, they also food jag. However, they are both overweight so that's not something I worry about. My worries are more about adequate nutrition and the fact that most of what they will eat is crap food, IMO. So I give them their gummy bear vitamins, model a healthy diet with my own eating, and hope for the best. 

 

It is very difficult, and while I have more or less given up now that my kids are older and can prepare their own foods, I recall how much I struggled when they were younger. So here's some hugs for ya....


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#8 of 11 Old 07-29-2013, 02:42 PM - Thread Starter
 
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Thank you to both you! This whole feeding thing is so difficult. 

 

He does have cognitive delays, he functions a year younger then his actual age. So at a 3 year old level rather then 4. He does not respond to rewards or bribes. He does not understand a lot of explanation. I have to keep things very simple and streamlined, doesn't understand abstract concepts at all. 

 

He only drinks water, juice, or some soft drinks, nothing else. 

 

I had a very long conversation today with his main therapist who shares my concern that he is FTT, and not even getting enough calories to meet his basic caloric needs and that we wouldn't even know it because of all his issues.  

 

 

And time to pick up a kid...  


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#9 of 11 Old 09-13-2013, 09:11 PM
 
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Peony - just wanted to commiserate as dealing with severe food issues is so upsetting and exhausting, I feel for you. Its lonely too as people who have only dealt with the usual toddler picky eating thing have NO CLUE about it! Im sure you will make the right decision about the food therapy. How much help have the OT's given specifically for the feeding aspect? Do you feel like you're at the end of what an OT can offer in terms of feeding help? You will know way more than me about it all as my ds has only been getting help for less than a year since we realised that he wasnt just going through a picky toddler phase but soemthing more extreme (and it certainly is isnt it!) 

All the best 

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#10 of 11 Old 09-14-2013, 07:13 AM - Thread Starter
 
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Lottie, I feel like we have reached the end of where the OTs can help. Everyone locally tells me that yes there is a problem, but they have no idea what to tell me. 

 

 

The feeding clinic that I had been talking to, called about two weeks ago and they had a slot for him. I leave at the beginning of Oct for a two week stay there with several different evals and 90 minutes of feeding therapy daily with the feeding specialist herself. There is supposed to be a second two week stay in Nov. I can't even wrap my mind around that yet, just getting the logistics figured out for Oct, is maddening enough. I think this is the right step. Since school started back up, he has been eating slightly more, but this still isn't normal. I have only recently noticed that  his stomach is quite distended compared to his little stick legs and arms. I am hoping that during the comprehensive eval which includes 5 different specialists, that someone will be able to shed some light on it. And our primary doc put in a referral for a  pediatric orthopedic rehab doc that we are still waiting on because we are leaning towards  thinking perhaps mild CP which makes a lot of sense. 


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#11 of 11 Old 09-14-2013, 07:41 PM
 
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Well done advocating for your son and going after the help he needs. I hope it goes well and there are some lightbulb moments where one or more of those specialists can shed some light on what will be helpful going forward. Maybe there will even be other parents around who can relate and are helpful to chat to, us mummies need a bit of support too I reckon! Good luck with all the logistics and travel too. 

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