Re: Need info on Reflux, DSI, Apraxia, Oral Defensiveness

[Guest guest]

Jordan had reflux (also missed by the pediatrician) and I believe it was caused

by the hypotonia (again, missed by the pediatrician). When a child has low

muscle tone, everything else is weak...there fore the " flap " that keeps the

stomach contents down is weak and allows regurgitation. REFLUX. It's possible

that the irritation from the reflux caused your son to be orally

defensive...very true.

Get the reflux under control so he's comfortable. Then work on the rest symptom

by symptom. And stay connected to the people on this list...they are all

wonderful.

~Karyn

[ ] Need info on Reflux, DSI, Apraxia, Oral

Defensiveness

Hello, I've been here for a while, watching the boards, reading

websites and books, everything I can find on the above mentioned

subjects. My 29 month old boy has reflux that went undiagnosed until

he was 20 months old. By that time, he was also speech delayed and

orally defensive to the extreme, still eats only purees although

speech therapy has helped him with his oral motor skills, his speech

is improving and he has recently just started to chew.

[Guest guest]

Just wanted to let you know that my son (now 4yrs3mos) had reflux that wasn't

treated until he was about 15 months old. He was very orally defensive and had

to go through feeding therapy. My son also is diagnosed with DSI, oral/limb

apraxia, hypotonia. My sons reflux is completely resolved after taking Reglan

for about a year. He has obvious signs of oral apraxia (including not puckering

his lips without cueing, not being able to move his tongue on command, groping

for sounds). He has been able to suck through a straw since age 11 months.

Because he is hypotonic (someone else said this also) I have always thought that

led to the reflux making the valve between his esophagus and stomach a little

loose and I felt the Reglan helped with decreasing the acid production and the

oral defensiveness until his valve was working properly. I have worked with

numerous children with reflux and it can lead to oral defensiveness. If you

think that is your son's main issue then go with your instincts. I do know that

the symptoms of apraxia have seemed to be much more prevalent the older my son

gets.

Good luck

[Guest guest]

Hi Phyllis,

Here a link to GERD Word, They too have a message board that was

helpful for me in the past:

http://www.geocities.com/HotSprings/Villa/2193/

I personally know how frustrating this can be! And I'm sure that most

of Adam's " oral defensivenss " is a result of the reflux directly

and indirectly. As you may remember, Chase's hx of reflux has

resulted in a G-Tube placement. He never advanced from thinned purees

prior to surgery. Now, 3mo out from surgery, Chase is just starting

to slowly re-introduce pureed foods in small quantities along with

bolus G-tube feeds. Chase just turned 3yo today, and for the first

time he attempted to eat icing from his cake.

In the past, if eating caused pain and discomfort, it is only natural

that the child would make the connection and develope food and eating

adversions. It is a built in defensive mechenism.

I have heard over and over again from Chase's doctors and therapists

that " a child must first learn to eat and chew properly before they

can learn to talk. " This makes good sence in that there is a certain

seguence of events that must be learned before moving on to the next

set of tasks.

Feel free to email me directly. Take care,

Kris

How can I find out more about this? I have searched and searched

for

> info on reflux causing the types of delays and problems that my boy

> has and I can't seem to find any answers.

[Guest guest]

I also feel strongly that in addition to the speech therapy, OT is needed.

Being orally defensive may be from the reflux but he could also have oral motor

apraxia as well. The OT will help him deal with different textures to adapt.

This will then help him to try to eat more. We went thru this w/Mark.

How was your son finally diagnosed at 20 mo? What testing was done?

Selena

Re: [ ] Need info on Reflux, DSI, Apraxia, Oral

Defensiveness

Jordan had reflux (also missed by the pediatrician) and I believe it was caused

by the hypotonia (again, missed by the pediatrician). When a child has low

muscle tone, everything else is weak...there fore the " flap " that keeps the

stomach contents down is weak and allows regurgitation. REFLUX. It's possible

that the irritation from the reflux caused your son to be orally

defensive...very true.

Get the reflux under control so he's comfortable. Then work on the rest

symptom by symptom. And stay connected to the people on this list...they are

all wonderful.

~Karyn

[Guest guest]

Has your son been evaluated by a neurologist? How long was your son on the

omega oils and which ones?

Has your son been evaluated by your local EI dept? What GI reflux medication is

he on?

Your son sounds almost like a mirror of Mark. I have never heard of reflux by

itself causing these types of problems. Reflux is usually in combination with

different issues(apraxia, DSI,CAPD, etc).

Good luck. Any questions, please let me know. Like I said, your son sounded

like my Mark. He'll be three the end of next month.

Selena

[ ] Need info on Reflux, DSI, Apraxia, Oral

Defensiveness

Hello, I've been here for a while, watching the boards, reading

websites and books, everything I can find on the above mentioned

subjects. My 29 month old boy has reflux that went undiagnosed until

he was 20 months old. By that time, he was also speech delayed and

orally defensive to the extreme, still eats only purees although

speech therapy has helped him with his oral motor skills, his speech

is improving and he has recently just started to chew.

My problem is how to determine for sure what his problems are.

Apraxia and DSI are neurodevelopmental disorders. I suspect that his

speech delay, oral-motor problems and his oral defensiveness are a

direct result of having reflux that went undiagnosed for so long. He

doesnt exhibit most of the identifying symptoms of either apraxia or

DSI and the omega oils did nothing to help.

I think that reflux made him orally defensive to the extreme, he

never learned to use the muscles in his mouth properly so his speech

became delayed and he is so defensive orally that even throughout the

day, his mouth is held rigid.

How can I find out more about this? I have searched and searched for

info on reflux causing the types of delays and problems that my boy

has and I can't seem to find any answers. There is much info out

there on all of the afflictions separately, but little to nothing on

how thay can be related and what the long term effects and outcomes

are. It's important to me to determine whether he has a

neurodevelopmental disorder or a type of oral phobia that he needs to

overcome - the treatments would be different of course and so would

the path that he takes as far as education - sending him to a special

ed type of school or a regular pre-school that has smaller classes

with individual attention to catch him up. I also need to find out

whether it really matters what caused his problems in the end. Ie.,

if reflux did indeed cause his speech delay, is the speech delay now

a long-term neurodevelopmental issue? Any ideas on this or

suggestions on how to find the answers I seek would be greatly

appreciated!

[Guest guest]

Hi Selena and thank you for your responses. I'll try to fill you in

on your questions & the things I left out.

Adam has been on the Omega oils for 6 or 7 mos now. Also a " double

dose " for around 3 mos. No surge of improvement.

Adam was evaluated by EI at 19 mos of age. Too early for diagnoses

but all of the afflictions mentioned in the title of this message

have been mentioned.

At 19 or 20 mos. of age, I found that by feeding Adam in front of a

favorite video (Elmo), with a pile of toys nearby to amuse & distract

him I could get him to complete a meal. Once he started eating more,

he gained weight and got out of the " failure to thrive " danger zone

but also started coughing during meals and vomiting daily. He was

seen by a pediatric GI specialist who diagnosed reflux and started

him on Zantac. The symptoms went away within a couple of days.

Adam goes for OT twice a week. He has no problems with sand, water,

play-doh, rice, beans etc. but he does have lots of fun playing. He

did have a bit of trouble with the sandbox early on but got over his

fear alot more quickly I think than would a child with DSI. We

brought him to the beach for the first time this summer andhe had a

blast - kept us on the run because he liked both the water and the

sand! I read the book " The out-of-sync child " and it doesnt describe

Adam at all. He also does swinging, jumping, etc. with much

happiness. The therapy is focused for a child with sensory

integration dysfunction and does nothing at all for his most severe

issue which is the oral defensiveness. He does not have hypotonia.

But he is hypertonic around his mouth (not shoulders, arms etc, just

his mouth). He doesnt use his mouth properly yet, he learned

bubbles, horn, straw drinking but is still working on side-to-side

with his tongue and on chewing. Different lighting and sounds are ok

with him, all within normal range. He goes to a local gym class with

regular kids his age and he fits right in with his age group in every

way except expressive language. Again, I dont think the OT is

helping him because he isnt afraid of new or different textures

unless its for eating them! I'd like to find an OT who can help with

that but its been an almost impossible struggle for me!

As far as more testing, he's going to St ph's feeding center late

next month for a complete eval and hopefully admission into their

intensive day program. He will also go see Dr Agin (author of " the

late talker " ) in November. These visits will give us a definitive

diagnosis, I'm sure although they may come in a bit late - we'll

likely have to decide on his pre-school program prior to having our

answers. This can be adjusted, I know, but with waiting lists, etc,

I'm just trying to gather as much info as I can on the inter-relation

of the above mentioned problems.

Thanks again

--- In , " selelk " <selelk@w...>

wrote:

> Has your son been evaluated by a neurologist? How long was your

son on the omega oils and which ones?

> Has your son been evaluated by your local EI dept? What GI reflux

medication is he on?

>

> Your son sounds almost like a mirror of Mark. I have never heard

of reflux by itself causing these types of problems. Reflux is

usually in combination with different issues(apraxia, DSI,CAPD,

etc).

>

> Good luck. Any questions, please let me know. Like I said, your

son sounded like my Mark. He'll be three the end of next month.

> Selena

[Guest guest]

Before he started on the Zantac at 19 or 20 mo, how did he do w/eating? How did

he do when he was an infant? Did he have swallowing/vomiting issues?

Did he have an eval by a feeding/speech therapist?

Sorry for all the questions, I'm just trying to get a better grip on the

situation. Mark threw up from the first moment I gave him a bottle in the

hospital. Within the first month, he was coughing continually, throwing up and

screaming just about 24 hrs a day. We had to change to different formulas about

three times. By 2 months, he was put on Zantac, really no help and his UGI

series you could see the liquid going down and then coming up. He did better

when he was put on liquid prilosec twice a day. He wasn't coughing all the time

or throwing up every day. Because it was a liquid, the chemical formulation

broke down about mid month, he would throw up more often and scream more. Thank

goodness at one year, Prevacid was introduced. We open the capsule and put the

granules on a spoon w/applesauce. It was really the first time, he started to

look and act less in pain. Because of other food allergies and intolerances,

his weight has always been an issue. Has your son been seen by a nutrionist?

How is he doing otherwise, developmentally speaking?

Sounds like he could definately could use help with his oral motor work-good

luck and let me know what's happening.

Selena

Your son sounds definately or

[ ] Re: Need info on Reflux, DSI, Apraxia, Oral

Defensiveness

[Guest guest]

Hi again Selena,

Right from the time he was born, Adam " didnt like to eat " . He had a

little trouble latching on, my milk " dried up " at 3 mos and we

switched him to formula. Other than a seeming lack of interest in

eating, he had no symptoms. It was a daily struggle to get him to

eat enough, he was born in the 3rd percentile for weight and stayed

there, with a few dips into " failure to thrive " . At his 9-month

visit, I asked his doc about reflux but was assured that he didnt

have it because he had no symptoms. We took him to an ear nose throat

specialist who took a good look (especially for " tongue tie " which is

in my husband's family) but all was OK. He never took to eating baby

foods well, turned his head away, shook his head and kept his hands

in front of his mouth. This kept getting worse, especially when we

tried textured foods. He couldnt really chew but he didnt gag or

vomit, he just spit it back out.

When he finally started eating more (due to elmo videos and amusing

toys & songs etc), thats when he started showing symptoms of coughing

during a meal and daily vomiting. Thats when I took him to the GI

doc and got him started on Zantac. She had me bring an eating

history of everything he ate for 3 days and had a brief consult with

a nutritionist. We made some adjustments to his diet (eliminate heavy

cream, use extra virgin olive oil type things).

Developmentally, he seems like any other boy his age, except for

expressive language and eating. He's on of the " stars " in gym class,

very social and loving with family and friends, he enjoys new

experiences (unless its food!)

Yes, his oral-motor skills need work but thats where we're hitting a

wall. Before he can get better, he needs to get over his fear of

anything oral. His speech teacher and I are working on this slowly,

slowly, slowly but I think there should be an OT out there who could

help him too. The one he goes to now puts him into the easy category

of apraxic with DSI which doesnt fit him (unless I'm being

unrealistic but I dont think so)

Thanks for your interest and caring!

--- In , " selelk " <selelk@w...>

wrote:

> Before he started on the Zantac at 19 or 20 mo, how did he do

w/eating? How did he do when he was an infant? Did he have

swallowing/vomiting issues?

> Did he have an eval by a feeding/speech therapist?

> Sorry for all the questions, I'm just trying to get a better grip

on the situation. Mark threw up from the first moment I gave him a

bottle in the hospital. Within the first month, he was coughing

continually, throwing up and screaming just about 24 hrs a day. We

had to change to different formulas about three times. By 2 months,

he was put on Zantac, really no help and his UGI series you could see

the liquid going down and then coming up. He did better when he was

put on liquid prilosec twice a day. He wasn't coughing all the time

or throwing up every day. Because it was a liquid, the chemical

formulation broke down about mid month, he would throw up more often

and scream more. Thank goodness at one year, Prevacid was

introduced. We open the capsule and put the granules on a spoon

w/applesauce. It was really the first time, he started to look and

act less in pain. Because of other food allergies and intolerances,

his weight has always been an issue. Has your son been seen by a

nutrionist? How is he doing otherwise, developmentally speaking?

> Sounds like he could definately could use help with his oral motor

work-good luck and let me know what's happening.

> Selena

>

> Your son sounds definately or

>

> [ ] Re: Need info on Reflux, DSI,

Apraxia, Oral Defensiveness

[Guest guest]

I am catching up on email and I swear that you would be talking about my

child ! She is going to be three August 5th and she has close to the

same issues to a T. I cannot believe it! Not that I am ever glad to hear

of someone else's baby having severe feeding problems, but that I don't feel

like such an oddball. We have seen every type of specialist under the sun,

and two outpatient feeding clinics and done all types of therapy. has

had feeding issues since birth and severe reflux. She takes an adult dose

of prilosec, reglan, erythromycin, then tops it off with zantac and flovent

for allergies and asthma. She gets her nutrition with a bottle (Peptimin

jr). She has never been tube fed (except in the NICU at birth). We have

done the oral motor exercises and the Oral Beckman program. She has come a

long way.....we recently can get in her mouth with a toothbrush and she has

begun to chew on toys alittle. She can chew but not rotatory chew. She

will nibble on crunchy things...itty bitty bites but it all goes in her

cheeks. Yesterday I let her pocket....for the record. She had a piece of

food in her cheek for four hours. Four hours before I just had to get it

out. She can blow bubbles, drink from a straw, etc. Her smile is

horizontal and her speech is slurred when she says words. She gets mixed up

on her words when I know she knows the right words....mostly I am Daddy

unless she is stressed and I am um (Mom). She can say Ian for , oopy

for Snoopy or sometimes it can all come out clear. Sometimes I swear I hear

clear sentences but then it gone and she refuses to repeat because it is not

the same. She is getting much better at trying spontaneous speech. All and

all she is doing pretty good, considering where she came from except this

eating. I am excited to see the suggestions and ideas!

mom to 5 (32 week preemie, PVL, CP spastic diplegia, post SDR)

2 (32 week preemie, developmental delay, reflux,

microcephaly, trigoncephaly,

asthma, slow gastric emptying, apraxia?)