Eating issues and SPD...please chime in ANY thoughts/experience

Eating issues and SPD...please chime in ANY thoughts/experience

Joined: July 3rd, 2010, 9:13 pm

May 20th, 2012, 8:52 pm #1

As most of you know, DS has had issues with eating since he was itty bitty. He had reflux so bad that we had to feed him when he was drifting off to sleep, otherwise he would refuse all milk except an ounce or two every 5-10 hours. It got to be a real issue about the age of 6 months when he had more volitional control of what he would/wouldn't eat and took fewer naps. So, we started seeing a feeding specialist. She is well known throughout the county as a feeding specialist and is very well versed in sensory processing disorder. Many people bring their children from other states to see her and she trains other specialists all over the county. But, she is very, very costly and our insurance doesn't cover her.

Anyway, DS was doing better with reflux and eating. We dropped down to seeing her once a month and, although he is a picky eater, we thought he was doing pretty good. But at the last visit she said she sees more signs of SPD (she has said this all along, but he was doing really good)and that his oral motor skills are regressing. He has been eating less and avoiding all meats, which he ate in the past. We thought it was just molars coming in (all 4 have come in during the last 2 months) and he has been sick...caught a cold and cough from me. But, he is eating less variety, less volume (stopped all purees and won't eat meat), and lost a couple of ounces. He has also dropped a bottle. He is already tiny, and doesn't have room to lose much weight when he should be gaining.

Anyway, he doesn't seem to have issues with anything else but food. He used to avoid touching things like dirt, etc...and hated noises and bright lights, but he seemed to have got over all that as he got older and his reflux disappeared. He does get overwhelmed with too much food in front of him and swipes away his food alot. But, didn't seem super out-of-the ordinary to me.

Anyway, I guess I am wondering if anyone else has experience with this. Also, we are paying the feeding specialist a fortune out of pocket, and now she wants to see him weekly...that is about $1200.00 a month. So, any help anyone can give us would be great. We tried a therapist in our insurance network, but she didn't help at all. Also, even though the feeding specialist is truly an expert, could it really just be his molars and illness? She only sees him two hours once a month. And usually he is none too happy to be there so doesn't do his most stellar eating. Any thoughts?

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Joined: February 6th, 2007, 1:08 am

May 20th, 2012, 11:07 pm #2

My twins are also really difficult to get to eat anything. The girl is especially tiny (see photo below of their first lollipop). I have never heard of a feeding specialist here in Asia but I can tell you I struggle like mad with both of them. Both did have very bad reflux as babies, Anton worse than Allanah and both were on Losec until recently when I weaned first Allanah and then Anton. Anton also has benign paroxysmal torticollis which at times is very difficult to deal with (thank goodness is is benign and they grow out of it by 3).

If you son is really small and you can't feed him at all I think it is important to keep on with the feeling specialist if it is working. Perhaps you can speak to her and tell her the cost is just too much for you and maybe you can do once or twice a month instead of weekly - I am sure she would understand. I find with my two that they will eat in certain places in the house. I have recently bought a kids outdoor table and chair set and they will actually sit at that and eat. They will eat if they are in a restaurant and feed themselves - Allanah was the worst person ever to feed and her survival is only due to force feeding her or else there was no way she would eat.

Having had 5 children before the twins and no feeding issues I never believed it possible that there was such a thing as being unable to get kids to eat but OMG these 2 have tried my patience and still are.

I don't have much advice other than to say anything you learn can you please share. I know a few others are struggling here. (((())))



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Joined: August 16th, 2011, 10:08 pm

May 20th, 2012, 11:30 pm #3

As most of you know, DS has had issues with eating since he was itty bitty. He had reflux so bad that we had to feed him when he was drifting off to sleep, otherwise he would refuse all milk except an ounce or two every 5-10 hours. It got to be a real issue about the age of 6 months when he had more volitional control of what he would/wouldn't eat and took fewer naps. So, we started seeing a feeding specialist. She is well known throughout the county as a feeding specialist and is very well versed in sensory processing disorder. Many people bring their children from other states to see her and she trains other specialists all over the county. But, she is very, very costly and our insurance doesn't cover her.

Anyway, DS was doing better with reflux and eating. We dropped down to seeing her once a month and, although he is a picky eater, we thought he was doing pretty good. But at the last visit she said she sees more signs of SPD (she has said this all along, but he was doing really good)and that his oral motor skills are regressing. He has been eating less and avoiding all meats, which he ate in the past. We thought it was just molars coming in (all 4 have come in during the last 2 months) and he has been sick...caught a cold and cough from me. But, he is eating less variety, less volume (stopped all purees and won't eat meat), and lost a couple of ounces. He has also dropped a bottle. He is already tiny, and doesn't have room to lose much weight when he should be gaining.

Anyway, he doesn't seem to have issues with anything else but food. He used to avoid touching things like dirt, etc...and hated noises and bright lights, but he seemed to have got over all that as he got older and his reflux disappeared. He does get overwhelmed with too much food in front of him and swipes away his food alot. But, didn't seem super out-of-the ordinary to me.

Anyway, I guess I am wondering if anyone else has experience with this. Also, we are paying the feeding specialist a fortune out of pocket, and now she wants to see him weekly...that is about $1200.00 a month. So, any help anyone can give us would be great. We tried a therapist in our insurance network, but she didn't help at all. Also, even though the feeding specialist is truly an expert, could it really just be his molars and illness? She only sees him two hours once a month. And usually he is none too happy to be there so doesn't do his most stellar eating. Any thoughts?

Hi gr8tful1, I can sooo relate to this. My boy has just turned 6 and although still awaiting final confirmation we (including Dr's) believe he has SPD. And I hate to say it but eating is one of the BIGGEST issues. Just like your son, my boy had severe reflux as a baby but your guy seems to have 'stopped' his eating earlier than my guy did. My guy 'stopped' around 18mths. Meat is indeed my son's major refusal also. He also hates seeing a lot of food on his plate.

Uhhh... is there an answer? I don't know. Is he going to a pediatric OT? Because that will help. And they will be able to give you exercises and activities you can do with him to help his SPD. As he gets older you may find his SPD shows in other ways also, don't be surprised if that happens. It is rarely contained to one aspect. This is a great age to get in early for occupational therapy. Also I'm not sure if you have been told this, but the majority of kids with SPD usually end up with another diagnosis along the track... often ADHD or autism. I believe only 10% of children with SPD have it in isolation of other conditions. Not wanting to scare you but just so that there is an awareness as he grows.

With food refusal, some ideas I found/find helpful are:
* feed little bits of finger food regularly rather than 'meals'-little fingers of toast with his favourite spread; meat and veges done in the processor but not quite at puree level - I've seen some people add sultanas or apple to this to 'sweeten' it and make it more appealing to the non-meat lovers; if he is at the stage of eating pizza bites you can hide a lot under cheese!

* my guy loves anything dairy.... so yoghurts, cheese pieces etc might work.

* he may prefer food if he can eat it with his hands rather than a spoon.

* when he is older gradual conditioning of foods he refuses will often work. Step 1 - on his plate but doesn't have to touch it. Step 2 - on his plate and he just needs to smell it. Step 3 - on his plate and he has one lick of it. Step 4 - takes a nibble at it, sits it on his tongue and can spit it out. Step 5 - takes a bite and chews and can spit it out. Step 6 - takes a bite and swallows.

* my guy's favourites are pasta, dairy, 'food' drinks (like the breakfast in a bottle type stuff), vegetables (yeah, his favourite is broccoli!!!). But there are also food groups he won't eat... meat, fish, eggs, fruit. You just need to find what he will eat and make the best of it I think. Look for recipes online with the ingredients he likes although even though my guy likes most veges he won't eat them cooked certain ways.

About the eating specialist... I think I would continue to see her once a month and if you aren't already, start seeing a pediatric OT and get an activity program for home. I found my son's eating really improved after starting the activities (although he is much older). I also never had the worry of him being a 'small' baby (he was born at 10lbs three weeks early!) but I imagine that would make all of this so much more stressful.

All the best, hope you find a solution that works for him!
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Joined: April 10th, 2008, 1:25 am

May 21st, 2012, 12:32 am #4

As most of you know, DS has had issues with eating since he was itty bitty. He had reflux so bad that we had to feed him when he was drifting off to sleep, otherwise he would refuse all milk except an ounce or two every 5-10 hours. It got to be a real issue about the age of 6 months when he had more volitional control of what he would/wouldn't eat and took fewer naps. So, we started seeing a feeding specialist. She is well known throughout the county as a feeding specialist and is very well versed in sensory processing disorder. Many people bring their children from other states to see her and she trains other specialists all over the county. But, she is very, very costly and our insurance doesn't cover her.

Anyway, DS was doing better with reflux and eating. We dropped down to seeing her once a month and, although he is a picky eater, we thought he was doing pretty good. But at the last visit she said she sees more signs of SPD (she has said this all along, but he was doing really good)and that his oral motor skills are regressing. He has been eating less and avoiding all meats, which he ate in the past. We thought it was just molars coming in (all 4 have come in during the last 2 months) and he has been sick...caught a cold and cough from me. But, he is eating less variety, less volume (stopped all purees and won't eat meat), and lost a couple of ounces. He has also dropped a bottle. He is already tiny, and doesn't have room to lose much weight when he should be gaining.

Anyway, he doesn't seem to have issues with anything else but food. He used to avoid touching things like dirt, etc...and hated noises and bright lights, but he seemed to have got over all that as he got older and his reflux disappeared. He does get overwhelmed with too much food in front of him and swipes away his food alot. But, didn't seem super out-of-the ordinary to me.

Anyway, I guess I am wondering if anyone else has experience with this. Also, we are paying the feeding specialist a fortune out of pocket, and now she wants to see him weekly...that is about $1200.00 a month. So, any help anyone can give us would be great. We tried a therapist in our insurance network, but she didn't help at all. Also, even though the feeding specialist is truly an expert, could it really just be his molars and illness? She only sees him two hours once a month. And usually he is none too happy to be there so doesn't do his most stellar eating. Any thoughts?

Are you in the US it seems to me that they would have local feeding clinics in the childrens hospital. Its obvious a medical issue and it seems like your primary care could direct you on how to get help that the insurance company will pay for. I know my son was evaluated for all sorts of issues including feeding, and they were willing to help and get him into a feeding clinic. I just cant imagine this is the only help out there. Also is he drinking milk and have you tried adding carantaion instant breakfast to his milk to help with the calories.

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Joined: December 23rd, 2010, 2:11 am

May 21st, 2012, 3:08 am #5

As most of you know, DS has had issues with eating since he was itty bitty. He had reflux so bad that we had to feed him when he was drifting off to sleep, otherwise he would refuse all milk except an ounce or two every 5-10 hours. It got to be a real issue about the age of 6 months when he had more volitional control of what he would/wouldn't eat and took fewer naps. So, we started seeing a feeding specialist. She is well known throughout the county as a feeding specialist and is very well versed in sensory processing disorder. Many people bring their children from other states to see her and she trains other specialists all over the county. But, she is very, very costly and our insurance doesn't cover her.

Anyway, DS was doing better with reflux and eating. We dropped down to seeing her once a month and, although he is a picky eater, we thought he was doing pretty good. But at the last visit she said she sees more signs of SPD (she has said this all along, but he was doing really good)and that his oral motor skills are regressing. He has been eating less and avoiding all meats, which he ate in the past. We thought it was just molars coming in (all 4 have come in during the last 2 months) and he has been sick...caught a cold and cough from me. But, he is eating less variety, less volume (stopped all purees and won't eat meat), and lost a couple of ounces. He has also dropped a bottle. He is already tiny, and doesn't have room to lose much weight when he should be gaining.

Anyway, he doesn't seem to have issues with anything else but food. He used to avoid touching things like dirt, etc...and hated noises and bright lights, but he seemed to have got over all that as he got older and his reflux disappeared. He does get overwhelmed with too much food in front of him and swipes away his food alot. But, didn't seem super out-of-the ordinary to me.

Anyway, I guess I am wondering if anyone else has experience with this. Also, we are paying the feeding specialist a fortune out of pocket, and now she wants to see him weekly...that is about $1200.00 a month. So, any help anyone can give us would be great. We tried a therapist in our insurance network, but she didn't help at all. Also, even though the feeding specialist is truly an expert, could it really just be his molars and illness? She only sees him two hours once a month. And usually he is none too happy to be there so doesn't do his most stellar eating. Any thoughts?

I am sorry you are going through this.
I have a few questions..is the eating specialist a speech therapist? Who actually diagosed your child with SPD?
I also agree with D. Every large hospital that has a peds department (and NICU) has a clinic for feeding issues. We saw a speech therapist who specializes in feeding issues with our DD. She was a preemie and as you know, the last muscle in their bodies to gain full strength are their tongues. She gave us all sorts of equipment and taught us various methods to help her swallow her food. It helped so much..It was covered by insurance.
If your child has a diagnosis, I would fight for reimbursement with your insurance company.
Wish you the best.
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Joined: July 3rd, 2010, 9:13 pm

May 21st, 2012, 3:39 am #6

My twins are also really difficult to get to eat anything. The girl is especially tiny (see photo below of their first lollipop). I have never heard of a feeding specialist here in Asia but I can tell you I struggle like mad with both of them. Both did have very bad reflux as babies, Anton worse than Allanah and both were on Losec until recently when I weaned first Allanah and then Anton. Anton also has benign paroxysmal torticollis which at times is very difficult to deal with (thank goodness is is benign and they grow out of it by 3).

If you son is really small and you can't feed him at all I think it is important to keep on with the feeling specialist if it is working. Perhaps you can speak to her and tell her the cost is just too much for you and maybe you can do once or twice a month instead of weekly - I am sure she would understand. I find with my two that they will eat in certain places in the house. I have recently bought a kids outdoor table and chair set and they will actually sit at that and eat. They will eat if they are in a restaurant and feed themselves - Allanah was the worst person ever to feed and her survival is only due to force feeding her or else there was no way she would eat.

Having had 5 children before the twins and no feeding issues I never believed it possible that there was such a thing as being unable to get kids to eat but OMG these 2 have tried my patience and still are.

I don't have much advice other than to say anything you learn can you please share. I know a few others are struggling here. (((())))



I knew you would respond (thanks)as I know you have struggled with this as well. As you said, very few people understand that this issue could really exist. Kids eat when they are hungry, right? Even our ped told us that.

We have discussed our situation with the specialist and tried going once a month. He was doing really well, and I thought he still was until she saw him on Monday and said he was regressing. She is not willing to reduce her fees and says that he needs to be seen a minimum of twice a month, ideally weekly. She knows that the OT that our insurance takes was, I hate to say, not helpful in the least. The only option she gave us was to go to a colleague of hers that charges less per hour.

He is not terribly tiny...in the 15-25th percentile. But, he is so tall that his hight/weight percentile has hovered around 5, making it up to 15 two months ago. His sperm donor is very tall and lean, and the egg donor is short, but thin. So, some of this he comes by genetically. But some of it is simply not eating much.

This is not fun, is it? I love my son more than anything in the world and would do anything for him (including spending every dime we have). I just want him to get better.

Hope things get better and better for your twins!

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Joined: July 3rd, 2010, 9:13 pm

May 21st, 2012, 3:45 am #7

Hi gr8tful1, I can sooo relate to this. My boy has just turned 6 and although still awaiting final confirmation we (including Dr's) believe he has SPD. And I hate to say it but eating is one of the BIGGEST issues. Just like your son, my boy had severe reflux as a baby but your guy seems to have 'stopped' his eating earlier than my guy did. My guy 'stopped' around 18mths. Meat is indeed my son's major refusal also. He also hates seeing a lot of food on his plate.

Uhhh... is there an answer? I don't know. Is he going to a pediatric OT? Because that will help. And they will be able to give you exercises and activities you can do with him to help his SPD. As he gets older you may find his SPD shows in other ways also, don't be surprised if that happens. It is rarely contained to one aspect. This is a great age to get in early for occupational therapy. Also I'm not sure if you have been told this, but the majority of kids with SPD usually end up with another diagnosis along the track... often ADHD or autism. I believe only 10% of children with SPD have it in isolation of other conditions. Not wanting to scare you but just so that there is an awareness as he grows.

With food refusal, some ideas I found/find helpful are:
* feed little bits of finger food regularly rather than 'meals'-little fingers of toast with his favourite spread; meat and veges done in the processor but not quite at puree level - I've seen some people add sultanas or apple to this to 'sweeten' it and make it more appealing to the non-meat lovers; if he is at the stage of eating pizza bites you can hide a lot under cheese!

* my guy loves anything dairy.... so yoghurts, cheese pieces etc might work.

* he may prefer food if he can eat it with his hands rather than a spoon.

* when he is older gradual conditioning of foods he refuses will often work. Step 1 - on his plate but doesn't have to touch it. Step 2 - on his plate and he just needs to smell it. Step 3 - on his plate and he has one lick of it. Step 4 - takes a nibble at it, sits it on his tongue and can spit it out. Step 5 - takes a bite and chews and can spit it out. Step 6 - takes a bite and swallows.

* my guy's favourites are pasta, dairy, 'food' drinks (like the breakfast in a bottle type stuff), vegetables (yeah, his favourite is broccoli!!!). But there are also food groups he won't eat... meat, fish, eggs, fruit. You just need to find what he will eat and make the best of it I think. Look for recipes online with the ingredients he likes although even though my guy likes most veges he won't eat them cooked certain ways.

About the eating specialist... I think I would continue to see her once a month and if you aren't already, start seeing a pediatric OT and get an activity program for home. I found my son's eating really improved after starting the activities (although he is much older). I also never had the worry of him being a 'small' baby (he was born at 10lbs three weeks early!) but I imagine that would make all of this so much more stressful.

All the best, hope you find a solution that works for him!
Thanks for your response! We did see a ped OT and she discharged him two months ago saying that he was doing great. She was not very helpful, though. She didn't do anything except give him food during our sessions. We only saw her a short time and she never really saw any issues. But, we could try to find another OT in our insurance network. It would be a drive, but worth it if they help.

Thanks for the ideas! I have recently noticed that he does well with very small bites. He does best if distracted by people or TV (which I really, really try not to do...only when desperate). He used to love yogurt, but not recently. He loves fruit and crackers, so I try to give him crackers with protein.

Thanks again! I will look through your suggestions more and try some of them. Sounds like great ideas!!!

Good luck with your little guy!



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Joined: July 3rd, 2010, 9:13 pm

May 21st, 2012, 3:47 am #8

Are you in the US it seems to me that they would have local feeding clinics in the childrens hospital. Its obvious a medical issue and it seems like your primary care could direct you on how to get help that the insurance company will pay for. I know my son was evaluated for all sorts of issues including feeding, and they were willing to help and get him into a feeding clinic. I just cant imagine this is the only help out there. Also is he drinking milk and have you tried adding carantaion instant breakfast to his milk to help with the calories.

for your response! We did go to an OT through our Children's Hospital, but she not only didn't see an issue, she also didn't help much. We may try another, though, if we can find one that our insurance accepts.

It is difficult...only the feeding specialist sees major issues at this point (obviously when he was not eating at all it was a huge issue). But, we trust her. We will, if need be, continue to see her and just go further in to debt. But, alternatives sure are welcome!

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Joined: July 3rd, 2010, 9:13 pm

May 21st, 2012, 3:53 am #9

I am sorry you are going through this.
I have a few questions..is the eating specialist a speech therapist? Who actually diagosed your child with SPD?
I also agree with D. Every large hospital that has a peds department (and NICU) has a clinic for feeding issues. We saw a speech therapist who specializes in feeding issues with our DD. She was a preemie and as you know, the last muscle in their bodies to gain full strength are their tongues. She gave us all sorts of equipment and taught us various methods to help her swallow her food. It helped so much..It was covered by insurance.
If your child has a diagnosis, I would fight for reimbursement with your insurance company.
Wish you the best.
Sorry you have dealt with similar issues. Ugh. The feeding specialist works in a clinic with a bunch of specialists..OT, ST, etc...We only see the specialist, but the ST was there for the initial diagnosis. SPD is the specialists area of expertise and she is, from what I can tell, one of the leaders in that field. I'm not entirely convinced that he has SPD, but she sees signs and says his oral motor skills are regressing the last two months because of it. However, she is out of network and our insurance refuses to pay. The people we have see n that are in network have not been helpful at all...including those at the Children's Hospital. But, we may need to continue our search of in-network providers and/or bite the bullet and pay for her services.

Hope you and your daughter are doing well.

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Joined: October 9th, 2008, 2:53 am

May 21st, 2012, 5:12 am #10

As most of you know, DS has had issues with eating since he was itty bitty. He had reflux so bad that we had to feed him when he was drifting off to sleep, otherwise he would refuse all milk except an ounce or two every 5-10 hours. It got to be a real issue about the age of 6 months when he had more volitional control of what he would/wouldn't eat and took fewer naps. So, we started seeing a feeding specialist. She is well known throughout the county as a feeding specialist and is very well versed in sensory processing disorder. Many people bring their children from other states to see her and she trains other specialists all over the county. But, she is very, very costly and our insurance doesn't cover her.

Anyway, DS was doing better with reflux and eating. We dropped down to seeing her once a month and, although he is a picky eater, we thought he was doing pretty good. But at the last visit she said she sees more signs of SPD (she has said this all along, but he was doing really good)and that his oral motor skills are regressing. He has been eating less and avoiding all meats, which he ate in the past. We thought it was just molars coming in (all 4 have come in during the last 2 months) and he has been sick...caught a cold and cough from me. But, he is eating less variety, less volume (stopped all purees and won't eat meat), and lost a couple of ounces. He has also dropped a bottle. He is already tiny, and doesn't have room to lose much weight when he should be gaining.

Anyway, he doesn't seem to have issues with anything else but food. He used to avoid touching things like dirt, etc...and hated noises and bright lights, but he seemed to have got over all that as he got older and his reflux disappeared. He does get overwhelmed with too much food in front of him and swipes away his food alot. But, didn't seem super out-of-the ordinary to me.

Anyway, I guess I am wondering if anyone else has experience with this. Also, we are paying the feeding specialist a fortune out of pocket, and now she wants to see him weekly...that is about $1200.00 a month. So, any help anyone can give us would be great. We tried a therapist in our insurance network, but she didn't help at all. Also, even though the feeding specialist is truly an expert, could it really just be his molars and illness? She only sees him two hours once a month. And usually he is none too happy to be there so doesn't do his most stellar eating. Any thoughts?

Hi Gre8tful, I am so sorry to hear of your DS's trouble. I know almost nowt about reflux.
However, my DS swipes at his food and feels overwhelmed when I put a lot on his plate/bowl. So I only put a little food in his bowl and when he is almost finished that I put a little more on it. I don't clock watch when he is in the high chair (not that you are mind you don't get me wrong). But I"m in no rush for him to finish his food quickly. He usually eats most of the food but can take his time.

I remember my sister telling me 'if he only has a banana for dinner its ok now and again'. I remember that when my DS is not well or has no appetite/teething.
Whatever your DS will eat feed him that. If he is teething then get a teething ring or anything he can chew on. As you know its important for them to chew because of speech developemnt.
See if it is ok to put powdered protein in his bottles. Also feed him high calorie food when he does eat (but not sticky sweet stuff e.g. tooth decay foods).
Whatever does go into his mouth make each bite etc count a lot.
I"m sure you have tried all these things. Please let us know how you are going, thinking of you and hope you find some answers. best, THK
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