Is it definite? News on my son.

[Guest guest]

Hi everyone. I joined but haven't really participated after the first few day.

My sons issues are he was FTT and had an NG tube in from 6 months old till about

2yo. Then he was on lots of pediasure every day to help him gain weight. He

was slow to do every milestone. The GI doc diagnosed him with oral apraxia just

because he needed a diagnose for insurance and didn't know what else to lable

him as. He has had all kinds of tests. He is now 5yo almost 6yo. Today we got

a pretty definite diagnose which is...We know something is wrong and he is not

faking it because he has been this way since he was a baby and baby's don't know

how to fake or pretend or trick you like older kids might, but we can't tell you

what is wrong and you likely will never know. They said he seems to have

limited tongue movement compared to most people but it is not a major concern

because he seems to be able to move it far enough to make sounds he needs to and

stuff. He pricked him with a pin and he can feel it so he doesn't think there

is nerve damage. The only thing left is why won't he swallow. They don't know.

He thinks Nahtan can swallow and that the swallow study will show nothing wrong

becasue if he had problems swallowing he would be choking on liquids and he

isn't. He pockets food and dribbles it out his mouth sometimes. So since

there were so many tests that show nothing, I have to accept that this is how he

is and deal with it and not keep looking for answers that are not there. It

makes no sense to have a definite problem for no good reason. But we just will

never know why.

That was basically my vent. Thanks.

REBECCA

[Guest guest]

I don't know any way to edit my post but I must say I feel alone in this

situaiton even more so now. I know NO ONE online or anywhere with a kid like

this that doesn't have a reason for it. I don't feel like he really fits into

this apraxia group either even though the doc diagnosed him as oral apraxia

since there was no other explaination. That is no ones fault. I am just saying

how I feel. I belong to a FTT group too but even though he was diagnosed as FTT

he doesn't really fit in that goup now either. He is just special I guess )

unique that is for sure.

REBECCA

>

> Hi everyone. I joined but haven't really participated after the first few

day. My sons issues are he was FTT and had an NG tube in from 6 months old till

about 2yo. Then he was on lots of pediasure every day to help him gain weight.

He was slow to do every milestone. The GI doc diagnosed him with oral apraxia

just because he needed a diagnose for insurance and didn't know what else to

lable him as. He has had all kinds of tests. He is now 5yo almost 6yo. Today

we got a pretty definite diagnose which is...We know something is wrong and he

is not faking it because he has been this way since he was a baby and baby's

don't know how to fake or pretend or trick you like older kids might, but we

can't tell you what is wrong and you likely will never know. They said he seems

to have limited tongue movement compared to most people but it is not a major

concern because he seems to be able to move it far enough to make sounds he

needs to and stuff. He pricked him with a pin and he can feel it so he doesn't

think there is nerve damage. The only thing left is why won't he swallow. They

don't know. He thinks Nahtan can swallow and that the swallow study will show

nothing wrong becasue if he had problems swallowing he would be choking on

liquids and he isn't. He pockets food and dribbles it out his mouth sometimes.

So since there were so many tests that show nothing, I have to accept that this

is how he is and deal with it and not keep looking for answers that are not

there. It makes no sense to have a definite problem for no good reason. But we

just will never know why.

>

> That was basically my vent. Thanks.

>

> REBECCA

>

[Guest guest]

It must be very frustrating to be in your situation! Not knowing, fitting in a

category and not having a support group, it must be a very lonely feeling!

I do feel that having a diagnoses doesn't 'fix' anything. I think if you break

down what your son is struggling with and try to help with that specific issue,

it is easier! Nothing is ever definite and Dr.s don't know everything!

Does your son speak at all? I started my son on MB12 and all of the nerves in

his mouth began to 'come alive'! It has helped him with eating and speaking!

There are other moms on this group with FTT babies

GFCFKids , They can probably help you with more info!

Stay strong and don't give up!

 

AJ

From: pepperderr <pepperderr2@...>

Subject: [ ] Re: Is it definite? News on my son.

Date: Friday, February 12, 2010, 7:55 PM

 

I don't know any way to edit my post but I must say I feel alone in this

situaiton even more so now. I know NO ONE online or anywhere with a kid like

this that doesn't have a reason for it. I don't feel like he really fits into

this apraxia group either even though the doc diagnosed him as oral apraxia

since there was no other explaination. That is no ones fault. I am just saying

how I feel. I belong to a FTT group too but even though he was diagnosed as FTT

he doesn't really fit in that goup now either. He is just special I guess )

unique that is for sure.

REBECCA

>

> Hi everyone. I joined but haven't really participated after the first few day.

My sons issues are he was FTT and had an NG tube in from 6 months old till about

2yo. Then he was on lots of pediasure every day to help him gain weight. He was

slow to do every milestone. The GI doc diagnosed him with oral apraxia just

because he needed a diagnose for insurance and didn't know what else to lable

him as. He has had all kinds of tests. He is now 5yo almost 6yo. Today we got a

pretty definite diagnose which is...We know something is wrong and he is not

faking it because he has been this way since he was a baby and baby's don't know

how to fake or pretend or trick you like older kids might, but we can't tell you

what is wrong and you likely will never know. They said he seems to have limited

tongue movement compared to most people but it is not a major concern because he

seems to be able to move it far enough to make sounds he needs to and stuff. He

pricked him

with a pin and he can feel it so he doesn't think there is nerve damage. The

only thing left is why won't he swallow. They don't know. He thinks Nahtan can

swallow and that the swallow study will show nothing wrong becasue if he had

problems swallowing he would be choking on liquids and he isn't. He pockets food

and dribbles it out his mouth sometimes. So since there were so many tests that

show nothing, I have to accept that this is how he is and deal with it and not

keep looking for answers that are not there. It makes no sense to have a

definite problem for no good reason. But we just will never know why.

>

> That was basically my vent. Thanks.

>

> REBECCA

>

[Guest guest]

Hi ,

I guess I would say that there are many reasons to keep looking for answers. I

know that the search is stressful and emotional, but there is likely to be

someone out there that can help your child. Have you looked into biomedical

solutions? Maybe he has extreme allergies that are interfering. Have you tested

him for toxins? You might find a DAN doctor who can help. There is so much

research going into autism and even though your child is not autistic, there

might be some answers in that community.

Best Wishes,

> >

> > Hi everyone. I joined but haven't really participated after the first few

day. My sons issues are he was FTT and had an NG tube in from 6 months old till

about 2yo. Then he was on lots of pediasure every day to help him gain weight.

He was slow to do every milestone. The GI doc diagnosed him with oral apraxia

just because he needed a diagnose for insurance and didn't know what else to

lable him as. He has had all kinds of tests. He is now 5yo almost 6yo. Today

we got a pretty definite diagnose which is...We know something is wrong and he

is not faking it because he has been this way since he was a baby and baby's

don't know how to fake or pretend or trick you like older kids might, but we

can't tell you what is wrong and you likely will never know. They said he seems

to have limited tongue movement compared to most people but it is not a major

concern because he seems to be able to move it far enough to make sounds he

needs to and stuff. He pricked him with a pin and he can feel it so he doesn't

think there is nerve damage. The only thing left is why won't he swallow. They

don't know. He thinks Nahtan can swallow and that the swallow study will show

nothing wrong becasue if he had problems swallowing he would be choking on

liquids and he isn't. He pockets food and dribbles it out his mouth sometimes.

So since there were so many tests that show nothing, I have to accept that this

is how he is and deal with it and not keep looking for answers that are not

there. It makes no sense to have a definite problem for no good reason. But we

just will never know why.

> >

> > That was basically my vent. Thanks.

> >

> > REBECCA

> >

>

[Guest guest]

---sounds like major sensory issues plus FTT--sounds like major metabolic

disorder, and a lot of the kids on this list have these things to a a certain

degree.  I think there's a lot too learn here---metabolic problems often led to

neurological problems and there's lot of talk about that here and other lists.

Have you tried any biomedical interventions--diet/supplements. you son sounds

like a typical example of a missed diagnosis because of that FTT.  Any special

diets ever recommended?  You need a biomed doc.

All the best,

Elena

[Guest guest]

Hi , my son pocket food also. he is 6 and weight 42 lb. At age 6, he

still pockets but now he swallows. As long as you remind him to chew the food in

his mouth before adding. I just believe it takes some of us longer to chew

food. Even though, he eats a variety of food now he really only eats if he is

extremely hungry. I'm don't know too many people that chew there food is it 8

good times before swallowing. I know I don't. It may explain 25 extra pounds I

gain over the last 3 years.

Tracey

________________________________

From: pepperderr <pepperderr2@...>

Sent: Fri, February 12, 2010 8:55:33 PM

Subject: [ ] Re: Is it definite? News on my son.

 

I don't know any way to edit my post but I must say I feel alone in this

situaiton even more so now. I know NO ONE online or anywhere with a kid like

this that doesn't have a reason for it. I don't feel like he really fits into

this apraxia group either even though the doc diagnosed him as oral apraxia

since there was no other explaination. That is no ones fault. I am just saying

how I feel. I belong to a FTT group too but even though he was diagnosed as FTT

he doesn't really fit in that goup now either. He is just special I guess )

unique that is for sure.

REBECCA

>

> Hi everyone. I joined but haven't really participated after the first few day.

My sons issues are he was FTT and had an NG tube in from 6 months old till about

2yo. Then he was on lots of pediasure every day to help him gain weight. He was

slow to do every milestone. The GI doc diagnosed him with oral apraxia just

because he needed a diagnose for insurance and didn't know what else to lable

him as. He has had all kinds of tests. He is now 5yo almost 6yo. Today we got a

pretty definite diagnose which is...We know something is wrong and he is not

faking it because he has been this way since he was a baby and baby's don't know

how to fake or pretend or trick you like older kids might, but we can't tell you

what is wrong and you likely will never know. They said he seems to have limited

tongue movement compared to most people but it is not a major concern because he

seems to be able to move it far enough to make sounds he needs to and stuff. He

pricked him

with a pin and he can feel it so he doesn't think there is nerve damage. The

only thing left is why won't he swallow. They don't know. He thinks Nahtan can

swallow and that the swallow study will show nothing wrong becasue if he had

problems swallowing he would be choking on liquids and he isn't. He pockets food

and dribbles it out his mouth sometimes. So since there were so many tests that

show nothing, I have to accept that this is how he is and deal with it and not

keep looking for answers that are not there. It makes no sense to have a

definite problem for no good reason. But we just will never know why.

>

> That was basically my vent. Thanks.

>

> REBECCA

>

[Guest guest]

Elena,

Thanks. What makes you say you think it is metobolic? Because of his weight

loss? I ask that because when he was a baby, when all this started, they said

he had a large amount of methylmalonic acid in his system. They did a biopsy

because they were 110% sure he had methylmalonic acidemia. But it came back

negative. He was in ketosis as a baby we know that. No special diets. He just

takes lactaid because he is lactose intollerant. He drinks pediasure to help

gain weight. He used to drink 4 bottles a day and pretty much stay the same

weight and gain very slow, but as he gets older he is on 2 bottles a day and is

growing now. Does Biomedical mean diet and suplements or what? All this

started at around 4 months when he lost a pound in a week and they thought maybe

they should do something after me telling them over and over all he does is

throw up. He has since outgrown that but is on Prevacid for reflux and has

asthma and allergies to dogs, cats and dust. No food allergies. He is

constantly stuffed up. Snores, had apnea but it improved when he had tonsils

and adenoids out. He grinds he teeth too OMG I hate that. Uggg. Nothing else

I can think of at the moment.

REBECCA

>

> ---sounds like major sensory issues plus FTT--sounds like major

metabolic disorder, and a lot of the kids on this list have these things to a a

certain degree.  I think there's a lot too learn here---metabolic problems often

led to neurological problems and there's lot of talk about that here and other

lists. Have you tried any biomedical interventions--diet/supplements. you son

sounds like a typical example of a missed diagnosis because of that FTT.  Any

special diets ever recommended?  You need a biomed doc.

>

> All the best,

> Elena

>