Re: Question about swallow study and other issues....

[Guest guest]

No Tami your not. My son has a feeding tube. We can do the puddings and the stage 3s, does a few sips of fluids, but.... That's it.. It is very frustrating.....

All you can do is keep trying, take it day by day. Your son is much younger than mine. is 8. Our issues are more about behavior than ability. The swallow study will show you his ability. just didn't have the ability till the last year or so. He does now. Its tough.

Good luck,

Hugs,

-- Question about swallow study and other issues....

Hi,

I hope someone has an answer to this question and others. My son (DS) is 23 months today. We have him scheduled in two weeks for a modified swallow study. He has not drank any kind of liquids in months and is still on stage 3 baby food. He is not advancing past the stage 3. IT is getting frustrating. He has an extreme gag reflex from anything solid or too textured.

He was breastfed for one year. He had to be supplemented with formula bottles/bm due to failure to thrive. His suck was not great. At 4 months he went on baby cereal and did really well with it. Eventually I was able to give up the bottles all together and just breastfeed. I got pregnant around when he was a year and was having a lot of spotting issues so the dr wanted me to stop so I did. He then went on bottles and did ok for a while. Then he started giving them up and I tried sippy cups . I figured he wouldn’t take a straw so I tried that. He only took that a little while and I tried straw cups and honey bear cups which he did for another month. Then he would take a few sips and then totally gave it up to where he is not drinking at all. The open cup he either made a mess or moved it off his chair.

I took him to Kennedy Kreiger to S-L feeding program and they said he had a oral motor issue which we had been working on and they think that the drinking is related to that. Can anyone relate to this? Am I the mother of the only child in the world that doesn’t drink and won’t advance past baby food. I have 2 other kids and a baby and I am getting really frustrated.

Thanks,

Tami

PS About the swallow study how long does it take and what does it involve?

[Guest guest]

>

>

>

> Hi,

>

>

>

> I hope someone has an answer to this question and others. My son

(DS)

> is 23 months today. We have him scheduled in two weeks for a

modified

> swallow study. He has not drank any kind of liquids in months and

is

> still on stage 3 baby food. He is not advancing past the stage 3.

IT

> is getting frustrating. He has an extreme gag reflex from anything

> solid or too textured.

>

>

>

> He was breastfed for one year. He had to be supplemented with

formula

> bottles/bm due to failure to thrive. His suck was not great. At 4

> months he went on baby cereal and did really well with it.

Eventually I

> was able to give up the bottles all together and just breastfeed.

I got

> pregnant around when he was a year and was having a lot of spotting

> issues so the dr wanted me to stop so I did. He then went on

bottles

> and did ok for a while. Then he started giving them up and I tried

> sippy cups . I figured he wouldn't take a straw so I tried that.

He

> only took that a little while and I tried straw cups and honey bear

cups

> which he did for another month. Then he would take a few sips and

then

> totally gave it up to where he is not drinking at all. The open

cup he

> either made a mess or moved it off his chair.

>

>

>

> I took him to Kennedy Kreiger to S-L feeding program and they said

he

> had a oral motor issue which we had been working on and they think

that

> the drinking is related to that. Can anyone relate to this? Am I

the

> mother of the only child in the world that doesn't drink and won't

> advance past baby food. I have 2 other kids and a baby and I am

getting

> really frustrated.

>

>

>

> Thanks,

>

> Tami

>

Hi Tami,

I've been looking at a study which mentions that vocal cord paralysis

may be associated with DS. Has anyone mentioned that as a

possibility? During swallowing the vocal cords close so that the food

doesn't get into the airways. Does he seem distressed when he tries

to swallow?

[Guest guest]

No,

they don’t think there is a swallow problem just to be safe they ordered

this test. I think this is a waste of time since he could swallow just fine

months ago. Dunno. Had a few bouts with croup and colds so I just don’t

know….

Re: Question about swallow study and other issues....

>

>

>

> Hi,

>

>

>

> I hope someone has an answer to this question and others. My son

(DS)

> is 23 months today. We have him scheduled in two weeks for a

modified

> swallow study. He has not drank any kind of liquids in months and

is

> still on stage 3 baby food. He is not advancing past the stage 3.

IT

> is getting frustrating. He has an extreme gag reflex from anything

> solid or too textured.

>

>

>

> He was breastfed for one year. He had to be supplemented with

formula

> bottles/bm due to failure to thrive. His suck was not great. At 4

> months he went on baby cereal and did really well with it.

Eventually I

> was able to give up the bottles all together and just breastfeed.

I got

> pregnant around when he was a year and was having a lot of spotting

> issues so the dr wanted me to stop so I did. He then went on

bottles

> and did ok for a while. Then he started giving them up and I tried

> sippy cups . I figured he wouldn't take a straw so I tried that.

He

> only took that a little while and I tried straw cups and honey bear

cups

> which he did for another month. Then he would take a few sips and

then

> totally gave it up to where he is not drinking at all. The open

cup he

> either made a mess or moved it off his chair.

>

>

>

> I took him to Kennedy Kreiger to S-L feeding program and they said

he

> had a oral motor issue which we had been working on and they think

that

> the drinking is related to that. Can anyone relate to this? Am I

the

> mother of the only child in the world that doesn't drink and won't

> advance past baby food. I have 2 other kids and a baby and I am

getting

> really frustrated.

>

>

>

> Thanks,

>

> Tami

>

Hi Tami,

I've been looking at a study which mentions that vocal cord paralysis

may be associated with DS. Has anyone mentioned that as a

possibility? During swallowing the vocal cords close so that the food

doesn't get into the airways. Does he seem distressed when he tries

to swallow?

[Guest guest]

They will put him in a chair next to an x-ray machine. But the x-rays are videos rather than stills. An SLP will be there and feed him a variety of textures with barium. Then everyone will watch the x-ray movie of the food going down his throat. They expect it to be a huge production because kids can't be relied upon to be cooperative. My 15m old (DS) is breastfed and does best with a straw cup. She does seem to enjoy spitting the milk back out rather than swallowing it. She also likes throwing her cup to the floor after every drink. It takes her all day to empty a 6 oz cup. Most of her diet is stage 3 thickened with cereal. She is still young yet, so I'm not worried. Maybe I should? My 3 yo (CP) has dysphagia so she dislikes swallowing. She always did great on her swallow study, but is still 100% tube fed. I used to joke that if I could feed her barium we wouldn't need the tube.

On 1/6/07, Tami <tami.hostetter@...> wrote:

Hi,

I hope someone has an answer to this

question and others. My son (DS) is 23 months today. We have

him scheduled in two weeks for a modified swallow study. He has not drank

any kind of liquids in months and is still on stage 3 baby food. He is

not advancing past the stage 3. IT is getting frustrating. He has

an extreme gag reflex from anything solid or too textured.

He was breastfed for one year. He

had to be supplemented with formula bottles/bm due to failure to thrive.

His suck was not great. At 4 months he went on baby cereal and did really

well with it. Eventually I was able to give up the bottles all together

and just breastfeed. I got pregnant around when he was a year and was

having a lot of spotting issues so the dr wanted me to stop so I did. He

then went on bottles and did ok for a while. Then he started giving them

up and I tried sippy cups . I figured he wouldn't take a straw so I

tried that. He only took that a little while and I tried straw cups and

honey bear cups which he did for another month. Then he would take a few

sips and then totally gave it up to where he is not drinking at all. The

open cup he either made a mess or moved it off his chair.

I took him to Kennedy Kreiger to S-L

feeding program and they said he had a oral motor issue which we had been

working on and they think that the drinking is related to that. Can

anyone relate to this? Am I the mother of the only child in the world that doesn't

drink and won't advance past baby food. I have 2 other kids and a

baby and I am getting really frustrated.

Thanks,

Tami

PS About the swallow study how long does

it take and what does it involve?

[Guest guest]

got all excited about her video swallow test because she thought they were going to show a video on the screen LOL. She was pretty accomodating till she realized Barney wasn't going to show. We found it helpful to learn that we needed to feed her slower and follow with liquids; she aspirated once but cleared it so they were happy with that and she did not have re-flux. There's nothing like a french fry soaked in white paint. You can prepare to be covered in white gunk but it goes pretty quickly or at least it used to. Alot easier than the full upper GI barium 5.5 hour test we had last month. (blech) Usually a speech pathologist is there to write up a report which can be of help.

If it's any consolation as we all know by now (yawn) is still 17 for a few more minutes and is still on pureed food. As far as tests go this one wasn't too bad and the information gained was well worth it.

Sherry

[Guest guest]

Girl, I am there with you. My son is 3 now. He

drinks very well but does not chew worth a bean. He

has had so many gagging episodes that now anything

with a crunch or bites scare him to death. His

currently diet is soft solids. Mash potatos, sweet

potatoes, refried beans, applesauce (his favorites),

and he gulps mac and cheese and milk twice a day with

formula in it. I was feeding him stage 2 foods and

blended veggies and he was wilting away. We still

have his dietitian that comes out and weights and

measures him. We have him on vitamins that we got at

whole foods that she recommended (she spent 2 hours

there looking at everything) and we give him that in

the am and he has done better. We think that it may

now be a learned behavior. He does have oral motor

issues. His wonderful OT said that he is

hypersensitive on the exterior of his face (hates his

face washed) and hyposensitive on the interior. We

have done some beckman stretches which HELP we also

got flavors such as peppermint and cinnamin and Lemon

and we rubbed that on the interior of his mouth along

the cheek in a big C motion to warm up his mouth prior

to feedings. That helped to.

I too have an older child 9 and a younger child now 15

months so I know where you are coming from. My

biggest suggestion would be do

1) some of what I mentioned above/speech/OT person

that specializes in Oral Motor

2) Have someone else do the feedings such as a parent

or family memeber or even a daycare provider.

3) Send the new little one to some sort or daycare.

It has allowed me to get my mental capacity back.

Even though I so tired right now I can't spell. The

worse thing that I did was to try to take everything

on on top of a new little one. Delegate Delegate

Delegate. Our next step is to enroll him in a feeding

program that will work with him to get him to eat and

chew but I will do that after we get an eval done by a

GREAT speech person that came and spoke to our group.

I have talked with 2 moms that went through the

feeding clinic (at local childrens hospital and they

said their children have made great strives. They

don't allow parents in which makes me a little nervous

but if it gets him over his hump then thats something

for me to consider.

What part of the country are you in?

I hope this helps.

WEndy B

--- Tami <tami.hostetter@...> wrote:

>

>

> Hi,

>

>

>

> I hope someone has an answer to this question and

> others. My son (DS)

> is 23 months today. We have him scheduled in two

> weeks for a modified

> swallow study. He has not drank any kind of liquids

> in months and is

> still on stage 3 baby food. He is not advancing

> past the stage 3. IT

> is getting frustrating. He has an extreme gag

> reflex from anything

> solid or too textured.

>

>

>

> He was breastfed for one year. He had to be

> supplemented with formula

> bottles/bm due to failure to thrive. His suck was

> not great. At 4

> months he went on baby cereal and did really well

> with it. Eventually I

> was able to give up the bottles all together and

> just breastfeed. I got

> pregnant around when he was a year and was having a

> lot of spotting

> issues so the dr wanted me to stop so I did. He

> then went on bottles

> and did ok for a while. Then he started giving them

> up and I tried

> sippy cups . I figured he wouldn't take a straw so

> I tried that. He

> only took that a little while and I tried straw cups

> and honey bear cups

> which he did for another month. Then he would take

> a few sips and then

> totally gave it up to where he is not drinking at

> all. The open cup he

> either made a mess or moved it off his chair.

>

>

>

> I took him to Kennedy Kreiger to S-L feeding program

> and they said he

> had a oral motor issue which we had been working on

> and they think that

> the drinking is related to that. Can anyone relate

> to this? Am I the

> mother of the only child in the world that doesn't

> drink and won't

> advance past baby food. I have 2 other kids and a

> baby and I am getting

> really frustrated.

>

>

>

> Thanks,

>

> Tami

>

>

>

> PS About the swallow study how long does it take and

> what does it

> involve?

>

>

__________________________________________________

[Guest guest]

Also, I should mention that 3 DS, could tell

when I was tired and frustrated and he tends to follow

my lead. I noticed that as far as feeding went he did

better without me. It was a reality check for me and

now I understand that I will not be able to do

everything for him. Oh well.

I got to be in during his swallow study and found it

very cool and interesting to watch. My people had it

on a huge screen and they even joked about all the

teeth he had in his mouth!!!!

B

--- Tami <tami.hostetter@...> wrote:

> No, they don't think there is a swallow problem just

> to be safe they

> ordered this test. I think this is a waste of time

> since he could

> swallow just fine months ago. Dunno. Had a few

> bouts with croup and

> colds so I just don't know..

>

>

>

> Re: Question

> about swallow study and

> other issues....

>

>

>

>

> >

> >

> >

> > Hi,

> >

> >

> >

> > I hope someone has an answer to this question and

> others. My son

> (DS)

> > is 23 months today. We have him scheduled in two

> weeks for a

> modified

> > swallow study. He has not drank any kind of

> liquids in months and

> is

> > still on stage 3 baby food. He is not advancing

> past the stage 3.

> IT

> > is getting frustrating. He has an extreme gag

> reflex from anything

> > solid or too textured.

> >

> >

> >

> > He was breastfed for one year. He had to be

> supplemented with

> formula

> > bottles/bm due to failure to thrive. His suck was

> not great. At 4

> > months he went on baby cereal and did really well

> with it.

> Eventually I

> > was able to give up the bottles all together and

> just breastfeed.

> I got

> > pregnant around when he was a year and was having

> a lot of spotting

> > issues so the dr wanted me to stop so I did. He

> then went on

> bottles

> > and did ok for a while. Then he started giving

> them up and I tried

> > sippy cups . I figured he wouldn't take a straw so

> I tried that.

> He

> > only took that a little while and I tried straw

> cups and honey bear

> cups

> > which he did for another month. Then he would take

> a few sips and

> then

> > totally gave it up to where he is not drinking at

> all. The open

> cup he

> > either made a mess or moved it off his chair.

> >

> >

> >

> > I took him to Kennedy Kreiger to S-L feeding

> program and they said

> he

> > had a oral motor issue which we had been working

> on and they think

> that

> > the drinking is related to that. Can anyone relate

> to this? Am I

> the

> > mother of the only child in the world that doesn't

> drink and won't

> > advance past baby food. I have 2 other kids and a

> baby and I am

> getting

> > really frustrated.

> >

> >

> >

> > Thanks,

> >

> > Tami

> >

> Hi Tami,

>

> I've been looking at a study which mentions that

> vocal cord paralysis

> may be associated with DS. Has anyone mentioned that

> as a

> possibility? During swallowing the vocal cords close

> so that the food

> doesn't get into the airways. Does he seem

> distressed when he tries

> to swallow?

>

>

>

>

>

>

__________________________________________________

[Guest guest]

>

> No, they don't think there is a swallow problem just to be safe they

> ordered this test. I think this is a waste of time since he could

> swallow just fine months ago. Dunno. Had a few bouts with croup

and

> colds so I just don't know..

>

>

Thanks Tami.

I had posted this study on another list but it is of interest that

deficient glycine signalling may be behind vocal cord paralysis.

Threonine which is precursor to glycine has been used with success in

some with swallowing difficulties. Glycine is one of the amino acids

needed to make glutathione, so in cases of oxidative stress, I guess

you might deplete glycine stores. I'd be interested to see glycine

levels measured in those with swallowing difficulties in DS. Both

increased or decreased plasma glycine levels have been associated

with autism.

Ann Otol Rhinol Laryngol. 2005 Jun;114(6):494-8. Links

Congenital bilateral vocal cord paralysis and the role of

glycine.Berkowitz RG, Sun QJ, Pilowsky PM.

Hypertension and Stroke Research Laboratories, Department of

Physiology, University of Sydney, Sydney, Australia.

OBJECTIVES: We sought to modify normal laryngeal constrictor (LC)

motoneuron activity to induce a pattern of aberrant LC muscle

function that may serve as a model of congenital bilateral vocal cord

paralysis. METHODS: Single unit extracellular recordings of

functionally identified LC motoneurons were made in anesthetized

Sprague-Dawley rats, and the response to both intravenous and

iontophoretic application of the glycine antagonist strychnine was

studied. RESULTS: The postinspiratory firing pattern of LC

motoneurons became inspiratory after intravenous injection of

strychnine (4 of 5 rats), but no change was recorded in response to

strychnine iontophoresis (7 of 8 rats). CONCLUSIONS: Blockade of

glycinergic inhibitory neurotransmission by strychnine, acting above

the level of the LC motoneuron, causes LC motoneurons to fire during

inspiration rather than after inspiration. This observation suggests

that impaired glycine neurotransmission may be an underlying

mechanism that explains the clinical manifestations of congenital

bilateral vocal cord paralysis.

PMID: 16042108 [PubMed - indexed for MEDLINE]

[Guest guest]

I live

in Md. Sending the little one to daycare is not an option right now. She

is being breastfed and the other two are in a private school so we just can’t

afford it. I know this is the biggest issue for him so it could be worse. He

has a hole in his heart VSD which seems to be closing up and does not affect

him and other than a few bouts of croup and ear infections he has been

healthy. So I really can’t complain.

Tami

Re:

Question about swallow study and other issues....

Girl, I am there with you. My son is 3 now. He

drinks very well but does not chew worth a bean. He

has had so many gagging episodes that now anything

with a crunch or bites scare him to death. His

currently diet is soft solids. Mash potatos, sweet

potatoes, refried beans, applesauce (his favorites),

and he gulps mac and cheese and milk twice a day with

formula in it. I was feeding him stage 2 foods and

blended veggies and he was wilting away. We still

have his dietitian that comes out and weights and

measures him. We have him on vitamins that we got at

whole foods that she recommended (she spent 2 hours

there looking at everything) and we give him that in

the am and he has done better. We think that it may

now be a learned behavior. He does have oral motor

issues. His wonderful OT said that he is

hypersensitive on the exterior of his face (hates his

face washed) and hyposensitive on the interior. We

have done some beckman stretches which HELP we also

got flavors such as peppermint and cinnamin and Lemon

and we rubbed that on the interior of his mouth along

the cheek in a big C motion to warm up his mouth prior

to feedings. That helped to.

I too have an older child 9 and a younger child now 15

months so I know where you are coming from. My

biggest suggestion would be do

1) some of what I mentioned above/speech/OT person

that specializes in Oral Motor

2) Have someone else do the feedings such as a parent

or family memeber or even a daycare provider.

3) Send the new little one to some sort or daycare.

It has allowed me to get my mental capacity back.

Even though I so tired right now I can't spell. The

worse thing that I did was to try to take everything

on on top of a new little one. Delegate Delegate

Delegate. Our next step is to enroll him in a feeding

program that will work with him to get him to eat and

chew but I will do that after we get an eval done by a

GREAT speech person that came and spoke to our group.

I have talked with 2 moms that went through the

feeding clinic (at local childrens hospital and they

said their children have made great strives. They

don't allow parents in which makes me a little nervous

but if it gets him over his hump then thats something

for me to consider.

What part of the country are you in?

I hope this helps.

WEndy B

--- Tami <tami.hostetterverizon (DOT) net>

wrote:

>

>

> Hi,

>

>

>

> I hope someone has an answer to this question and

> others. My son (DS)

> is 23 months today. We have him scheduled in two

> weeks for a modified

> swallow study. He has not drank any kind of liquids

> in months and is

> still on stage 3 baby food. He is not advancing

> past the stage 3. IT

> is getting frustrating. He has an extreme gag

> reflex from anything

> solid or too textured.

>

>

>

> He was breastfed for one year. He had to be

> supplemented with formula

> bottles/bm due to failure to thrive. His suck was

> not great. At 4

> months he went on baby cereal and did really well

> with it. Eventually I

> was able to give up the bottles all together and

> just breastfeed. I got

> pregnant around when he was a year and was having a

> lot of spotting

> issues so the dr wanted me to stop so I did. He

> then went on bottles

> and did ok for a while. Then he started giving them

> up and I tried

> sippy cups . I figured he wouldn't take a straw so

> I tried that. He

> only took that a little while and I tried straw cups

> and honey bear cups

> which he did for another month. Then he would take

> a few sips and then

> totally gave it up to where he is not drinking at

> all. The open cup he

> either made a mess or moved it off his chair.

>

>

>

> I took him to Kennedy Kreiger to S-L feeding program

> and they said he

> had a oral motor issue which we had been working on

> and they think that

> the drinking is related to that. Can anyone relate

> to this? Am I the

> mother of the only child in the world that doesn't

> drink and won't

> advance past baby food. I have 2 other kids and a

> baby and I am getting

> really frustrated.

>

>

>

> Thanks,

>

> Tami

>

>

>

> PS About the swallow study how long does it take and

> what does it

> involve?

>

>

__________________________________________________

[Guest guest]

Tami-

Has he had his thyroid tested lately? My son Danny used to have a lot

of problems w/gagging, and for several months (from around 8 months of age to

15 months, would only eat strained sweet potatoes and drink Allsoy from a

bottle. When he was 15 months old, we found out that he was hypothyroid,

started him on replacement meds, and within a week (I kid you not) he ate table

food for the first time in his life (chili w/meat and beans) In retrospect, I

think that his thyroid was enlarged due to his hypothyroidism, and it made him

gag when he tried to swallow anything other than certain foods …I am

hypothyroid, too, and when my thyroid is out of whack, I get a ‘pushy’

feeling in my throat. Danny still had oral motor issues, but he was able to eat

a LOT better once the thyroid meds were

started, because the gagging stopped.(still not great, but a lot better) He

finally worked through his feeding problems, and has not had any problems at

all for several years..but it was pretty frustrating for a couple of years at

first.

kathyR(mom to Danny, 8 yrs old and his 6 older sibs)

From: Down Syndrome Treatment [mailto:Down Syndrome Treatment ] On Behalf Of Tami

Sent: Saturday, January 06, 2007

9:40 PM

Down Syndrome Treatment

Subject: RE:

Re: Question about swallow study and other

issues....

No, they don’t think there is a swallow problem just to be

safe they ordered this test. I think this is a waste of time since he

could swallow just fine months ago. Dunno. Had a few bouts with

croup and colds so I just don’t know….

-----Original

Message-----

From: Down Syndrome Treatment

[mailto:Down Syndrome Treatment ]

On Behalf Of pennant57

Sent: Saturday, January 06, 2007

9:29 PM

Down Syndrome Treatment

Subject:

Re: Question about swallow study and other issues....

>

>

>

> Hi,

>

>

>

> I hope someone has an answer to this question and others. My son

(DS)

> is 23 months today. We have him scheduled in two weeks for a

modified

> swallow study. He has not drank any kind of liquids in months and

is

> still on stage 3 baby food. He is not advancing past the stage 3.

IT

> is getting frustrating. He has an extreme gag reflex from anything

> solid or too textured.

>

>

>

> He was breastfed for one year. He had to be supplemented with

formula

> bottles/bm due to failure to thrive. His suck was not great. At 4

> months he went on baby cereal and did really well with it.

Eventually I

> was able to give up the bottles all together and just breastfeed.

I got

> pregnant around when he was a year and was having a lot of spotting

> issues so the dr wanted me to stop so I did. He then went on

bottles

> and did ok for a while. Then he started giving them up and I tried

> sippy cups . I figured he wouldn't take a straw so I tried that.

He

> only took that a little while and I tried straw cups and honey bear

cups

> which he did for another month. Then he would take a few sips and

then

> totally gave it up to where he is not drinking at all. The open

cup he

> either made a mess or moved it off his chair.

>

>

>

> I took him to Kennedy Kreiger to S-L feeding program and they said

he

> had a oral motor issue which we had been working on and they think

that

> the drinking is related to that. Can anyone relate to this? Am I

the

> mother of the only child in the world that doesn't drink and won't

> advance past baby food. I have 2 other kids and a baby and I am

getting

> really frustrated.

>

>

>

> Thanks,

>

> Tami

>

Hi Tami,

I've been looking at a study which mentions that vocal cord paralysis

may be associated with DS. Has anyone mentioned that as a

possibility? During swallowing the vocal cords close so that the food

doesn't get into the airways. Does he seem distressed when he tries

to swallow?

[Guest guest]

My son is 11. He has a g tube and does eat and drink orally.

Though his eating is only pureed or fork mashed foods. At present doc

is limiting him to only 1oz an hr of either food or drink, but that is

another story.

started out eating and drinking fine. Then as the yrs went by

and he not progressing pass the pureed stuff we started OrM Therapy in

earnest. We live in AZ and SRJ is pd for by the state, so we go weekly.

The barium study was helpful to us in showing that was not

aspirating, even if he chokes on the food it still goes down the

correct way.

Our biggest eye opener and best testing tool so far has been a scope,

I know it is more evasive and I personnally hate it. But it showed us

WHY could not, would not progress past the pureed foods. Maybe

your child has the same problem......esophagitis and or candida (from

antibiotics and steroids). His esophagus is so red and inflammed that

eating hurts way too bad to eat anything more textured.

janet

[Guest guest]

Hi Tami,

No, you're not the only mother who has a child who won't drink and won't advance past baby food! I've seen many posts on various boards and lists and I've also seen stuff about this on some OMT DVD's I'm watching from SRJ.

Sara Rosenfeld- at Talk Tools (ww.talktools.net) has a very good oral motor therapy program. I'd suggest trying to do something with them.

It also sounds like your son has sensitivity issues, which can also be commonly seen in DS. There are many things that OMT does to help them not to be sensitive to things anymore. I am watching a 6 hour DVD set from Talk Tools on the Down Syndrome population (they have the DVD set on their site, for just a couple hundred dollars, I believe). I'm only about an hour or so into the series and some of the first things they do with patients with DS, is to make them so that they are not sensitive to things anymore. Once they can get that straightened out, they can then move onto other things - straw drinking, different types of food, etc.

My brother with DS is 23 months old also, but he doesn't have any sensitivity problems. But, I do know there are alot of children with DS who do and there is alot that can be done for them.

HTH's,

Qadoshyah

*Got Down Syndrome?

www.gotdownsyndrome.net

From: Down Syndrome Treatment [mailto:Down Syndrome Treatment ] On Behalf Of TamiSent: Saturday, January 06, 2007 4:55 PMDown Syndrome Treatment Subject: Question about swallow study and other issues....

Hi,

I hope someone has an answer to this question and others. My son (DS) is 23 months today. We have him scheduled in two weeks for a modified swallow study. He has not drank any kind of liquids in months and is still on stage 3 baby food. He is not advancing past the stage 3. IT is getting frustrating. He has an extreme gag reflex from anything solid or too textured.

He was breastfed for one year. He had to be supplemented with formula bottles/bm due to failure to thrive. His suck was not great. At 4 months he went on baby cereal and did really well with it. Eventually I was able to give up the bottles all together and just breastfeed. I got pregnant around when he was a year and was having a lot of spotting issues so the dr wanted me to stop so I did. He then went on bottles and did ok for a while. Then he started giving them up and I tried sippy cups . I figured he wouldn’t take a straw so I tried that. He only took that a little while and I tried straw cups and honey bear cups which he did for another month. Then he would take a few sips and then totally gave it up to where he is not drinking at all. The open cup he either made a mess or moved it off his chair.

I took him to Kennedy Kreiger to S-L feeding program and they said he had a oral motor issue which we had been working on and they think that the drinking is related to that. Can anyone relate to this? Am I the mother of the only child in the world that doesn’t drink and won’t advance past baby food. I have 2 other kids and a baby and I am getting really frustrated.

Thanks,

Tami

PS About the swallow study how long does it take and what does it involve?

[Guest guest]

My son's eating habits have greatly changed with thyroid pills! He

had cold hands and feet, dry skin, very lethargic and candida! All

marked symtoms of a child having hypothyroidism! he is a changed

child! Took time to find a good doctor experienced in thyroid stuff

BUT My baby has changes so very much thanks to this diagnosis and

treatment! Just remember blood tests are not accurate for thyroid!

So one must look at the symptoms! There is info all ove the net on

thyroid and kids with down syndrome! My 17 year old started on it

too and he has warm hands and feet for the first time in 17 years!

he is talking more and looks so healthy! No more dry skin and body

temperature is getting back to normal! Body temp is the best way to

test for hypothyroidsm! If the temp is under 98.2 there is a

problem! Take temperature in am as they wake to get the best reading!

All the best!

Pamela

>

> Hi Tami,

> No, you're not the only mother who has a child who won't drink

and

> won't advance past baby food! I've seen many posts on various

boards and

> lists and I've also seen stuff about this on some OMT DVD's I'm

watching

> from SRJ.

> Sara Rosenfeld- at Talk Tools (ww.talktools.net) has a

very good

> oral motor therapy program. I'd suggest trying to do something with

them.

> It also sounds like your son has sensitivity issues, which can

also be

> commonly seen in DS. There are many things that OMT does to help

them not to

> be sensitive to things anymore. I am watching a 6 hour DVD set from

Talk

> Tools on the Down Syndrome population (they have the DVD set on

their site,

> for just a couple hundred dollars, I believe). I'm only about an

hour or so

> into the series and some of the first things they do with patients

with DS,

> is to make them so that they are not sensitive to things anymore.

Once they

> can get that straightened out, they can then move onto other

things - straw

> drinking, different types of food, etc.

> My brother with DS is 23 months old also, but he doesn't have

any

> sensitivity problems. But, I do know there are alot of children

with DS who

> do and there is alot that can be done for them.

>

>

> HTH's,

> Qadoshyah

> <http://www.geocities.com/gotgenetics/home.html>

> *Got Down Syndrome?

> www.gotdownsyndrome.net <http://www.gotdownsyndrome.net/>

> <http://www.geocities.com/dsinfo05/home.html>

> <http://www.geocities.com/westernsuntack>

>

> _____

>

> From: Down Syndrome Treatment

> [mailto:Down Syndrome Treatment ] On Behalf Of Tami

> Sent: Saturday, January 06, 2007 4:55 PM

> Down Syndrome Treatment

> Subject: Question about swallow study

and other

> issues....

>

>

>

>

>

>

> Hi,

>

>

>

> I hope someone has an answer to this question and others. My son

(DS) is

> 23 months today. We have him scheduled in two weeks for a modified

swallow

> study. He has not drank any kind of liquids in months and is still

on stage

> 3 baby food. He is not advancing past the stage 3. IT is getting

> frustrating. He has an extreme gag reflex from anything solid or

too

> textured.

>

>

>

> He was breastfed for one year. He had to be supplemented with

formula

> bottles/bm due to failure to thrive. His suck was not great. At 4

months

> he went on baby cereal and did really well with it. Eventually I

was able

> to give up the bottles all together and just breastfeed. I got

pregnant

> around when he was a year and was having a lot of spotting issues

so the dr

> wanted me to stop so I did. He then went on bottles and did ok for

a while.

> Then he started giving them up and I tried sippy cups . I figured

he

> wouldn't take a straw so I tried that. He only took that a little

while and

> I tried straw cups and honey bear cups which he did for another

month. Then

> he would take a few sips and then totally gave it up to where he is

not

> drinking at all. The open cup he either made a mess or moved it

off his

> chair.

>

>

>

> I took him to Kennedy Kreiger to S-L feeding program and they said

he had a

> oral motor issue which we had been working on and they think that

the

> drinking is related to that. Can anyone relate to this? Am I the

mother of

> the only child in the world that doesn't drink and won't advance

past baby

> food. I have 2 other kids and a baby and I am getting really

frustrated.

>

>

>

> Thanks,

>

> Tami

>

>

>

> PS About the swallow study how long does it take and what does it

involve?

>