Re: Sensory Issues with Food Textures and Feeding

[Guest guest]

I have experienced this in 2 of my kids. One has scad the other does not. They both have hypotonia (low tone) in their bodies which affected their mouths as well. When my daughter was little she could not swallow food without gagging and/or vomitting. We took her to an oral motor specialist who deals with feeding issues. We wound up putting alot of cinammon in her baby food(she couldnt taste anything unless it had a strong taste because of the low tone) and then we would freeze it in ice cube trays. She could feel the cold in her mouth. When she was a baby we would cut the ice into little pieces so it could basically dissolve in her mouth. The baby food does not get as hard as ice in the freezer, and we were careful about the size pieces we gave ger. Eventually when she moved on to reguklar food we would get high taste foods like chicken with broccolli in a garlic sauce, puree it in a blender and then freeze it. we also did alot of exerciese with her mouth. Everything worked really well and although she has some residual stuff, you would never know she had a feeding problem. With Matt who has scad,his tone in his mouth was not as low as my daughters,he has problems with his jaw stability and we are working on that. My oral motor therapist travels and lectures. If you are interested, if you tell me where you live I can find out if she will be in your area. For example, she will be in Arizona next week. If I can help in any way, feel free to email me privately. I have been dealing with feeding issues for 8 years!! Jill, Matts mom, scad

[Guest guest]

I have experienced this in 2 of my kids. One has scad the other does not. They both have hypotonia (low tone) in their bodies which affected their mouths as well. When my daughter was little she could not swallow food without gagging and/or vomitting. We took her to an oral motor specialist who deals with feeding issues. We wound up putting alot of cinammon in her baby food(she couldnt taste anything unless it had a strong taste because of the low tone) and then we would freeze it in ice cube trays. She could feel the cold in her mouth. When she was a baby we would cut the ice into little pieces so it could basically dissolve in her mouth. The baby food does not get as hard as ice in the freezer, and we were careful about the size pieces we gave ger. Eventually when she moved on to reguklar food we would get high taste foods like chicken with broccolli in a garlic sauce, puree it in a blender and then freeze it. we also did alot of exerciese with her mouth. Everything worked really well and although she has some residual stuff, you would never know she had a feeding problem. With Matt who has scad,his tone in his mouth was not as low as my daughters,he has problems with his jaw stability and we are working on that. My oral motor therapist travels and lectures. If you are interested, if you tell me where you live I can find out if she will be in your area. For example, she will be in Arizona next week. If I can help in any way, feel free to email me privately. I have been dealing with feeding issues for 8 years!! Jill, Matts mom, scad

[Guest guest]

I have experienced this in 2 of my kids. One has scad the other does not. They both have hypotonia (low tone) in their bodies which affected their mouths as well. When my daughter was little she could not swallow food without gagging and/or vomitting. We took her to an oral motor specialist who deals with feeding issues. We wound up putting alot of cinammon in her baby food(she couldnt taste anything unless it had a strong taste because of the low tone) and then we would freeze it in ice cube trays. She could feel the cold in her mouth. When she was a baby we would cut the ice into little pieces so it could basically dissolve in her mouth. The baby food does not get as hard as ice in the freezer, and we were careful about the size pieces we gave ger. Eventually when she moved on to reguklar food we would get high taste foods like chicken with broccolli in a garlic sauce, puree it in a blender and then freeze it. we also did alot of exerciese with her mouth. Everything worked really well and although she has some residual stuff, you would never know she had a feeding problem. With Matt who has scad,his tone in his mouth was not as low as my daughters,he has problems with his jaw stability and we are working on that. My oral motor therapist travels and lectures. If you are interested, if you tell me where you live I can find out if she will be in your area. For example, she will be in Arizona next week. If I can help in any way, feel free to email me privately. I have been dealing with feeding issues for 8 years!! Jill, Matts mom, scad

[Guest guest]

Hi,

My son has not been diagnosed with mito - he has been dx with a myopathy and we are on our way tomorrow for a biopsy with Shoffner b/c mito is suspected.

Anyhow, YES to answer your question. My son had a very difficult time getting off formula and onto solid food. He choked and gagged and sometimes stuffed his mouth until the food would dribble down. As his muscles got stronger this did go away but I often contemplated having a swallow study done to make sure that he wouldn't aspirate (breathe in particles of food which ends up in pneumonia) and to understand more why he didn't eat solid foods. If your son is choking and gagging when he eats, I would first make sure that it's not a muscular issue. A good speech therapist (one that works with little ones) would know how to get this done and which doctor in your area to go to. And, if he does have muscle or oral motor planning problems, therapy can help. And, if you can rule out muscular problems or oral motor planning problems, then, yes, there are also sensory issues with food textures. My son has also had these and we worked with an OT who did sensory integration therapy to improve his eating variety. It worked well for many months. Unfortunately, he became more ill and lost weight dramatically and almost had to have a feeding tube but he's now gained a few pounds and is doing better. He's still very picky and strongly prefers only crunchy foods.

Anne R

[Guest guest]

Hi,

My son has not been diagnosed with mito - he has been dx with a myopathy and we are on our way tomorrow for a biopsy with Shoffner b/c mito is suspected.

Anyhow, YES to answer your question. My son had a very difficult time getting off formula and onto solid food. He choked and gagged and sometimes stuffed his mouth until the food would dribble down. As his muscles got stronger this did go away but I often contemplated having a swallow study done to make sure that he wouldn't aspirate (breathe in particles of food which ends up in pneumonia) and to understand more why he didn't eat solid foods. If your son is choking and gagging when he eats, I would first make sure that it's not a muscular issue. A good speech therapist (one that works with little ones) would know how to get this done and which doctor in your area to go to. And, if he does have muscle or oral motor planning problems, therapy can help. And, if you can rule out muscular problems or oral motor planning problems, then, yes, there are also sensory issues with food textures. My son has also had these and we worked with an OT who did sensory integration therapy to improve his eating variety. It worked well for many months. Unfortunately, he became more ill and lost weight dramatically and almost had to have a feeding tube but he's now gained a few pounds and is doing better. He's still very picky and strongly prefers only crunchy foods.

Anne R

[Guest guest]

Hi,

My son has not been diagnosed with mito - he has been dx with a myopathy and we are on our way tomorrow for a biopsy with Shoffner b/c mito is suspected.

Anyhow, YES to answer your question. My son had a very difficult time getting off formula and onto solid food. He choked and gagged and sometimes stuffed his mouth until the food would dribble down. As his muscles got stronger this did go away but I often contemplated having a swallow study done to make sure that he wouldn't aspirate (breathe in particles of food which ends up in pneumonia) and to understand more why he didn't eat solid foods. If your son is choking and gagging when he eats, I would first make sure that it's not a muscular issue. A good speech therapist (one that works with little ones) would know how to get this done and which doctor in your area to go to. And, if he does have muscle or oral motor planning problems, therapy can help. And, if you can rule out muscular problems or oral motor planning problems, then, yes, there are also sensory issues with food textures. My son has also had these and we worked with an OT who did sensory integration therapy to improve his eating variety. It worked well for many months. Unfortunately, he became more ill and lost weight dramatically and almost had to have a feeding tube but he's now gained a few pounds and is doing better. He's still very picky and strongly prefers only crunchy foods.

Anne R

[Guest guest]

wrote:

He will take thin rice cereal and very smooth

pureed foods but he doesn't chew anything with chunks. He just lets

things sit in his mouth and chokes and gags on them. Has anyone run

into this with mito?

You might have him evaluated by an SLP and see what

they think. There may be some therapy that would help (either from

an SLP or OT), if it is an oral motor problem, or sensory problem, or whatever

it is. Or, they may have ideas on what sort of foods might work better

for him.

Lynne

[Guest guest]

You described my son. He does not chew anything. He swallows it

whole. We have had a lot of swallow studies to make sure he does

not aspirate, which could cause pneumonia.

Geri-Anne and Wyatt, Complex I

>

> I saw someone mention that their child had sensory issues with

food

> textures and I was wondering if anyone could explain this to me.

We are

> yet to find a diagnosis for my sons health problems and he also

seems to

> have feeding issues that I didn't really connect with the other

issues.

> He is 13 months and still mainly formula feed. He will take thin

rice

> cereal and very smooth pureed foods but he doesn't chew anything

with

> chunks. He just lets things sit in his mouth and chokes and gags

on

> them. Has anyone run into this with mito?

[Guest guest]

You described my son. He does not chew anything. He swallows it

whole. We have had a lot of swallow studies to make sure he does

not aspirate, which could cause pneumonia.

Geri-Anne and Wyatt, Complex I

>

> I saw someone mention that their child had sensory issues with

food

> textures and I was wondering if anyone could explain this to me.

We are

> yet to find a diagnosis for my sons health problems and he also

seems to

> have feeding issues that I didn't really connect with the other

issues.

> He is 13 months and still mainly formula feed. He will take thin

rice

> cereal and very smooth pureed foods but he doesn't chew anything

with

> chunks. He just lets things sit in his mouth and chokes and gags

on

> them. Has anyone run into this with mito?

[Guest guest]

You described my son. He does not chew anything. He swallows it

whole. We have had a lot of swallow studies to make sure he does

not aspirate, which could cause pneumonia.

Geri-Anne and Wyatt, Complex I

>

> I saw someone mention that their child had sensory issues with

food

> textures and I was wondering if anyone could explain this to me.

We are

> yet to find a diagnosis for my sons health problems and he also

seems to

> have feeding issues that I didn't really connect with the other

issues.

> He is 13 months and still mainly formula feed. He will take thin

rice

> cereal and very smooth pureed foods but he doesn't chew anything

with

> chunks. He just lets things sit in his mouth and chokes and gags

on

> them. Has anyone run into this with mito?

[Guest guest]

Dear :

Zack had a bad time w/ food. He gagged and threw up daily. We had a small barium swallow study done and although everything was fine, they noticed that it took a long time for the barium to move down the throat into the stomach and then transverse (travel across to the next destination). Because the kids with mito have such a problem w/ muscle weakness throughout their body, we discovered he had muscle weakness beginning in his mouth and could only tolerate a little bit of food at each sitting. In fact for about the 1st 2 1/2 years of his life, I pureed all our food and thinned it w/ milk, cream, water, or gravy depending what I cooked. Baby food has too much water and not enough calories. At 18 months he was still 15 pounds and was told to try and put weight on or else he would have to get a tube. I was determined and spent a lot of time getting in 3 ounces of food..sometimes it took over a hour but now at 3 yrs 8 months he is about 28 lbs...we are still in the 3rd percentile or below but he still doesn't have a tube and is thriving for the most part. Also, we continue w/ OT, speech, and PT to increase strength. They really had to work w/ him for sensory integration problems and desensitivity issues in his mouth with brushing and textures and to increase mouth..tongue strength. Try putting a little bit of wheat germ in his food to help w/ textures. That is the 1st advise I was given and don't be surprised if he gags but keep plugging along and you will see that your persistence will pay off. Also see about seeking occupational therapy..they work in this area as do speech therapists but OT's work on all over sensory problems..not just in the mouth. Rub the inside of his mouth w/ your fingers a few times a day and use a dry toothbrush to help w/ the sensitivity. Hope this helps...I really understand the frustration and thought we would never get past it and all the throw up...we still gag here and there and once in a while throw up but he has learned to work it out or spit his unwanted food in the garbage.

Mom to Zachary 3 1/2 yrs old..SCAD Variant and Mito Complex I and IV

5 yrs old not tested

Re: Sensory Issues with Food Textures and Feeding

You described my son. He does not chew anything. He swallows it whole. We have had a lot of swallow studies to make sure he does not aspirate, which could cause pneumonia.Geri-Anne and Wyatt, Complex I> > I saw someone mention that their child had sensory issues with food > textures and I was wondering if anyone could explain this to me. We are > yet to find a diagnosis for my sons health problems and he also seems to > have feeding issues that I didn't really connect with the other issues. > He is 13 months and still mainly formula feed. He will take thin rice > cereal and very smooth pureed foods but he doesn't chew anything with > chunks. He just lets things sit in his mouth and chokes and gags on > them. Has anyone run into this with mito?Please contact mito-owner with any problems or questions.

[Guest guest]

Dear :

Zack had a bad time w/ food. He gagged and threw up daily. We had a small barium swallow study done and although everything was fine, they noticed that it took a long time for the barium to move down the throat into the stomach and then transverse (travel across to the next destination). Because the kids with mito have such a problem w/ muscle weakness throughout their body, we discovered he had muscle weakness beginning in his mouth and could only tolerate a little bit of food at each sitting. In fact for about the 1st 2 1/2 years of his life, I pureed all our food and thinned it w/ milk, cream, water, or gravy depending what I cooked. Baby food has too much water and not enough calories. At 18 months he was still 15 pounds and was told to try and put weight on or else he would have to get a tube. I was determined and spent a lot of time getting in 3 ounces of food..sometimes it took over a hour but now at 3 yrs 8 months he is about 28 lbs...we are still in the 3rd percentile or below but he still doesn't have a tube and is thriving for the most part. Also, we continue w/ OT, speech, and PT to increase strength. They really had to work w/ him for sensory integration problems and desensitivity issues in his mouth with brushing and textures and to increase mouth..tongue strength. Try putting a little bit of wheat germ in his food to help w/ textures. That is the 1st advise I was given and don't be surprised if he gags but keep plugging along and you will see that your persistence will pay off. Also see about seeking occupational therapy..they work in this area as do speech therapists but OT's work on all over sensory problems..not just in the mouth. Rub the inside of his mouth w/ your fingers a few times a day and use a dry toothbrush to help w/ the sensitivity. Hope this helps...I really understand the frustration and thought we would never get past it and all the throw up...we still gag here and there and once in a while throw up but he has learned to work it out or spit his unwanted food in the garbage.

Mom to Zachary 3 1/2 yrs old..SCAD Variant and Mito Complex I and IV

5 yrs old not tested

Re: Sensory Issues with Food Textures and Feeding

You described my son. He does not chew anything. He swallows it whole. We have had a lot of swallow studies to make sure he does not aspirate, which could cause pneumonia.Geri-Anne and Wyatt, Complex I> > I saw someone mention that their child had sensory issues with food > textures and I was wondering if anyone could explain this to me. We are > yet to find a diagnosis for my sons health problems and he also seems to > have feeding issues that I didn't really connect with the other issues. > He is 13 months and still mainly formula feed. He will take thin rice > cereal and very smooth pureed foods but he doesn't chew anything with > chunks. He just lets things sit in his mouth and chokes and gags on > them. Has anyone run into this with mito?Please contact mito-owner with any problems or questions.

[Guest guest]

Dear :

Zack had a bad time w/ food. He gagged and threw up daily. We had a small barium swallow study done and although everything was fine, they noticed that it took a long time for the barium to move down the throat into the stomach and then transverse (travel across to the next destination). Because the kids with mito have such a problem w/ muscle weakness throughout their body, we discovered he had muscle weakness beginning in his mouth and could only tolerate a little bit of food at each sitting. In fact for about the 1st 2 1/2 years of his life, I pureed all our food and thinned it w/ milk, cream, water, or gravy depending what I cooked. Baby food has too much water and not enough calories. At 18 months he was still 15 pounds and was told to try and put weight on or else he would have to get a tube. I was determined and spent a lot of time getting in 3 ounces of food..sometimes it took over a hour but now at 3 yrs 8 months he is about 28 lbs...we are still in the 3rd percentile or below but he still doesn't have a tube and is thriving for the most part. Also, we continue w/ OT, speech, and PT to increase strength. They really had to work w/ him for sensory integration problems and desensitivity issues in his mouth with brushing and textures and to increase mouth..tongue strength. Try putting a little bit of wheat germ in his food to help w/ textures. That is the 1st advise I was given and don't be surprised if he gags but keep plugging along and you will see that your persistence will pay off. Also see about seeking occupational therapy..they work in this area as do speech therapists but OT's work on all over sensory problems..not just in the mouth. Rub the inside of his mouth w/ your fingers a few times a day and use a dry toothbrush to help w/ the sensitivity. Hope this helps...I really understand the frustration and thought we would never get past it and all the throw up...we still gag here and there and once in a while throw up but he has learned to work it out or spit his unwanted food in the garbage.

Mom to Zachary 3 1/2 yrs old..SCAD Variant and Mito Complex I and IV

5 yrs old not tested

Re: Sensory Issues with Food Textures and Feeding

You described my son. He does not chew anything. He swallows it whole. We have had a lot of swallow studies to make sure he does not aspirate, which could cause pneumonia.Geri-Anne and Wyatt, Complex I> > I saw someone mention that their child had sensory issues with food > textures and I was wondering if anyone could explain this to me. We are > yet to find a diagnosis for my sons health problems and he also seems to > have feeding issues that I didn't really connect with the other issues. > He is 13 months and still mainly formula feed. He will take thin rice > cereal and very smooth pureed foods but he doesn't chew anything with > chunks. He just lets things sit in his mouth and chokes and gags on > them. Has anyone run into this with mito?Please contact mito-owner with any problems or questions.

[Guest guest]

When my Kezia (Today is her 3rd Birthday!) came to live with us at 13 months of age she was unable to eat anything with even tiny lumps. She had reflux issues and was so bad that she would look at a lump in her food and gag. She was so used to vomiting with eating that she was afraid to try to eat. Unfortunately her foster parents before us never took her to a doctor to diagnose her so she suffered through the reflux until coming to live with us. The doctors put her on Prilosec until she was 19 months and we worked with her to slowly adjust her to firmer foods. She was delayed in drinking from a cup as well and we got her started on this right away. I am not sure why her foster parents didn't try to intervene sooner, they were very nice people. We just kept trying and slowly added more lumps and bigger ones until she was able to eat normally. One thing we found with her was that food that contained both liquid and lumps were much harder to eat than food that was just lumpy or just liquid. She would try to swallow the liquidy stuff not expecting the lumps and then gag so we avoided the Gerber 3 stage altogether. She is not a Mito child, just delayed in everything. NOW, however, she is not delayed at all and very smart. She eats normally other than occasionally not wanting to chew but to swallow things whole. So, there is hope. I hope Zipporrah will be the same. Her gagging is aweful and her excessive air swallowing and vomiting too. At least I have some experience with all this! Darla: mommy to Asenath, Zipporrah, Luke, Leah, , Isaac, Tirzah, Kezia, Marquis Re: Sensory Issues with Food Textures and Feeding You described my son. He does not chew anything. He swallows it whole. We have had a lot of swallow studies to make sure he does not aspirate, which could cause pneumonia.Geri-Anne and Wyatt, Complex I> > I saw someone mention that their child had sensory issues with food > textures and I was wondering if anyone could explain this to me. We are > yet to find a diagnosis for my sons health problems and he also seems to > have feeding issues that I didn't really connect with the other issues. > He is 13 months and still mainly formula feed. He will take thin rice > cereal and very smooth pureed foods but he doesn't chew anything with > chunks. He just lets things sit in his mouth and chokes and gags on > them. Has anyone run into this with mito?Please contact mito-owner with any problems or questions.

[Guest guest]

When my Kezia (Today is her 3rd Birthday!) came to live with us at 13 months of age she was unable to eat anything with even tiny lumps. She had reflux issues and was so bad that she would look at a lump in her food and gag. She was so used to vomiting with eating that she was afraid to try to eat. Unfortunately her foster parents before us never took her to a doctor to diagnose her so she suffered through the reflux until coming to live with us. The doctors put her on Prilosec until she was 19 months and we worked with her to slowly adjust her to firmer foods. She was delayed in drinking from a cup as well and we got her started on this right away. I am not sure why her foster parents didn't try to intervene sooner, they were very nice people. We just kept trying and slowly added more lumps and bigger ones until she was able to eat normally. One thing we found with her was that food that contained both liquid and lumps were much harder to eat than food that was just lumpy or just liquid. She would try to swallow the liquidy stuff not expecting the lumps and then gag so we avoided the Gerber 3 stage altogether. She is not a Mito child, just delayed in everything. NOW, however, she is not delayed at all and very smart. She eats normally other than occasionally not wanting to chew but to swallow things whole. So, there is hope. I hope Zipporrah will be the same. Her gagging is aweful and her excessive air swallowing and vomiting too. At least I have some experience with all this! Darla: mommy to Asenath, Zipporrah, Luke, Leah, , Isaac, Tirzah, Kezia, Marquis Re: Sensory Issues with Food Textures and Feeding You described my son. He does not chew anything. He swallows it whole. We have had a lot of swallow studies to make sure he does not aspirate, which could cause pneumonia.Geri-Anne and Wyatt, Complex I> > I saw someone mention that their child had sensory issues with food > textures and I was wondering if anyone could explain this to me. We are > yet to find a diagnosis for my sons health problems and he also seems to > have feeding issues that I didn't really connect with the other issues. > He is 13 months and still mainly formula feed. He will take thin rice > cereal and very smooth pureed foods but he doesn't chew anything with > chunks. He just lets things sit in his mouth and chokes and gags on > them. Has anyone run into this with mito?Please contact mito-owner with any problems or questions.

[Guest guest]

When my Kezia (Today is her 3rd Birthday!) came to live with us at 13 months of age she was unable to eat anything with even tiny lumps. She had reflux issues and was so bad that she would look at a lump in her food and gag. She was so used to vomiting with eating that she was afraid to try to eat. Unfortunately her foster parents before us never took her to a doctor to diagnose her so she suffered through the reflux until coming to live with us. The doctors put her on Prilosec until she was 19 months and we worked with her to slowly adjust her to firmer foods. She was delayed in drinking from a cup as well and we got her started on this right away. I am not sure why her foster parents didn't try to intervene sooner, they were very nice people. We just kept trying and slowly added more lumps and bigger ones until she was able to eat normally. One thing we found with her was that food that contained both liquid and lumps were much harder to eat than food that was just lumpy or just liquid. She would try to swallow the liquidy stuff not expecting the lumps and then gag so we avoided the Gerber 3 stage altogether. She is not a Mito child, just delayed in everything. NOW, however, she is not delayed at all and very smart. She eats normally other than occasionally not wanting to chew but to swallow things whole. So, there is hope. I hope Zipporrah will be the same. Her gagging is aweful and her excessive air swallowing and vomiting too. At least I have some experience with all this! Darla: mommy to Asenath, Zipporrah, Luke, Leah, , Isaac, Tirzah, Kezia, Marquis Re: Sensory Issues with Food Textures and Feeding You described my son. He does not chew anything. He swallows it whole. We have had a lot of swallow studies to make sure he does not aspirate, which could cause pneumonia.Geri-Anne and Wyatt, Complex I> > I saw someone mention that their child had sensory issues with food > textures and I was wondering if anyone could explain this to me. We are > yet to find a diagnosis for my sons health problems and he also seems to > have feeding issues that I didn't really connect with the other issues. > He is 13 months and still mainly formula feed. He will take thin rice > cereal and very smooth pureed foods but he doesn't chew anything with > chunks. He just lets things sit in his mouth and chokes and gags on > them. Has anyone run into this with mito?Please contact mito-owner with any problems or questions.

[Guest guest]

What is an SLP?

Thanks for the info.

Lynne wrote:

wrote: He will take thin rice cereal and very smooth pureed foods but he doesn't chew anything with chunks. He just lets things

sit in his mouth and chokes and gags on them. Has anyone run into this with

mito?

You might have him evaluated by an SLP and see what they think. There

may be some therapy that would help (either from an SLP or OT), if it is

an oral motor problem, or sensory problem, or whatever it is. Or, they may

have ideas on what sort of foods might work better for him. Lynne

Please contact mito-owner with any problems or questions.