Re: Logan Update

[Guest guest]

Kaye,

This is so great! Unsolicited hugs are just the best thing. I can't

wait to hear if the language progresses, too. Did you ever take him

off the diet completely with the SerenAid?

> Well, I have more good news. When I got the Pep and Zym in I

> decided to try Logan off the diet to see what would happen. That

was

> 2 days ago and we haven't seen ANY bad reactions. I've been giving

> him 1 pep and 1 zym with everything he eats (that's much easier

than

> the 3 or 4 Serenaid he needed). I'll keep my fingers crossed that

we

> cross that 3 day mark with no gluten reactions. I've also noticed

> he's more willing to try new foods. He's doing something new and

> improved almost every day. My favorite new thing is when I tell him

I

> love him, he gives me a big smile and a hug, even if he's across

the

> room and has to stop something he's doing to come over to me.

AAAUUHHH

> This is comming from a child who just a few short months ago

wouldn't

> pay a bit of attention to anyone unless he needed something from

you.

> The only way to get his attention, was to either call his name over

> and over until he got pissed at you, or go over to him and pull him

> away from what he was doing.

>

> HEY,

> Kaye (proud mom of Logan)

[Guest guest]

I tried giving him dairy while he was taking the Serenaid and he got

the constant runny nose and the crabbiness so he went back on the

diet. I was too afraid to test the gluten because it takes him so

long to recover from an infraction, but since chelating and getting

the " improved " enzymes (as I like to think of them) I thought we

should try. So far so good.

The non verbal issue is the hardest part for me too. Every time I

think I may never hear him say my name I break down. But he seems to

be understanding language more, so I have high hopes. I can't

remember where I had posted this before, so bear with me if you've

already heard this, but I think he is saying things, just in a way I

can't understand. I starting thinking this because the other day we

were going to Mcs to get his fries and he was making his

usual " iungee " sound in his sing-song voice when all of a sudden I

could swear I heard him say " I'm hungry " in the middle of the gibber-

gabber. I told him " I know you're hungry. " Now every time I hear

that " iungee " I assume that's what he's trying to say. It makes me

sad to think he's been trying to talk all along, but can't get the

words out right. How frustrating that must be for him. On the other

hand, if he was able to get the " I'm hungry " out.... Keeping my

fingers crossed for this too.

> Kaye,

>

> This is so great! Unsolicited hugs are just the best thing. I

can't

> wait to hear if the language progresses, too. Did you ever take

him

> off the diet completely with the SerenAid?

>

>

[Guest guest]

Hi Kaye

I am so glad to hear about your enzyme success. I waited two weeks on

these enzymes before trying a challenge, it worked great for my kids

too, but then about 3 weeks later the old ways started coming back. I

have suspected for a long time my kids were celiac, so I just

requested info from a few parents here with celiac kids, and they

believe what I am describing sounds like celiac, so at least I have

more information. I hope your son does not have this problem, but

please do keep an eye on him. I am still using the enzymes because

they help with almost all the other foods my kids also had problems

with, so now they can at least eat " real " gfcf foods!

Regarding your son's " nonsense " sounds, SHAPE THEM!!!! My son

muttered his first marginally-human sound at age 3-1/2, just after I

started the gfcfdiet. It was " wree " , because I always would say " oh

really? " and showed interest every time he tried to show me something

or get my attention, so he imitated that with " wree " . The speech

therapist had been trying for 4 months to get him to say " go " and

" more " with absolutely no success, not even for hand signs, he did not

make any sounds at all or try any other representational

communication. So when I heard that sound that was intelligible, I

told her let's try to shape it into " want " . So that is what we did.

And it took him about 2 weeks to associate that sound with " want " , and

then a few weeks later he figured out that sounds equal communication

of desires, so he finally said " go " and " more " and lots of others.

Now he says quite a few words, in 2-3 word sentences.

So I would definitely recommend, if you think your son said something

that even possibly could have been a real phrase, to pretend that he

in fact DID say that phrase, or any other phrase that would be useful

for him, and he will hopefully get the idea. So you would " repeat " it

back to him just like he " said " , for example he says " iungee " then you

get right in his face and say " you are HUNGRY? okay let's EAT " and

then give him a snack or whatever. If you do that every time, he

should make the connection after a while. Also when you start a meal,

ask him " are you HUNGRY? " and wait for him to make any sort of reply

[which you can shape later into something that sounds appropriate],

then say " GOOD, you are HUNGRY, let's EAT " . This worked for my son to

have responsive communication.

Good luck!!

> > Kaye,

> >

> > This is so great! Unsolicited hugs are just the best thing. I

> can't

> > wait to hear if the language progresses, too. Did you ever take

> him

> > off the diet completely with the SerenAid?

> >

> >

[Guest guest]

Kaye-

I agree with Dana as I'm going through the same thing with my just turned 3 yo.

Taryn's been babbling for months with all sorts of new sounds. We spent 5 months

in speech trying to get those " more " " go " and " all done " signs to no avail. Now

we just finshed our third month with our Nuerodevelelopmentalist and she's going

" Bob, Bob " pointing to anything that looks like her favorite veggie tale

character, as well as words like " ow-si " outside. Her ND says to copy her sounds

and shape them into the closest sounding real words. She also is demonstrating

knowing more than she can say. Lately she's learned her colors- I was having her

point to the correct flash card- then I saw her cousins walking her in a garden

having her find a red flower, a purple flower. It's neat stuff, but I'm anxious

for real coversation too. Hang in there.

Blessings-

[ ] Re: Logan Update

Regarding your son's " nonsense " sounds, SHAPE THEM!!!! My son

muttered his first marginally-human sound at age 3-1/2, just after I

started the gfcfdiet. It was " wree " , because I always would say " oh

really? " and showed interest every time he tried to show me something

or get my attention, so he imitated that with " wree " . The speech

therapist had been trying for 4 months to get him to say " go " and

" more " with absolutely no success, not even for hand signs, he did not

make any sounds at all or try any other representational

communication. So when I heard that sound that was intelligible, I

told her let's try to shape it into " want " . So that is what we did.

And it took him about 2 weeks to associate that sound with " want " , and

then a few weeks later he figured out that sounds equal communication

of desires, so he finally said " go " and " more " and lots of others.

Now he says quite a few words, in 2-3 word sentences.

ask him " are you HUNGRY? " and wait for him to make any sort of reply

[which you can shape later into something that sounds appropriate],

then say " GOOD, you are HUNGRY, let's EAT " . This worked for my son to

have responsive communication.

Good luck!!

> > Kaye,

> >

> > This is so great! Unsolicited hugs are just the best thing. I

> can't

> > wait to hear if the language progresses, too. Did you ever take

> him

> > off the diet completely with the SerenAid?

> >

> >

[Guest guest]

I totally agree that this is what I need to do. I have really been

trying, but I must have absolutely NO imagination, because I can't

seem to figure out any similar words to his sounds. In hindsight I

realized his " iungee " sounded like " I'm hungry " , but before he

actually said " I'm hungry " I didn't catch it. I hope I get better at

it.

> Kaye-

>

> I agree with Dana as I'm going through the same thing with my just

turned 3 yo. Taryn's been babbling for months with all sorts of new

sounds. We spent 5 months in speech trying to get those " more " " go "

and " all done " signs to no avail. Now we just finshed our third month

with our Nuerodevelelopmentalist and she's going " Bob, Bob " pointing

to anything that looks like her favorite veggie tale character, as

well as words like " ow-si " outside. Her ND says to copy her sounds

and shape them into the closest sounding real words. She also is

demonstrating knowing more than she can say. Lately she's learned her

colors- I was having her point to the correct flash card- then I saw

her cousins walking her in a garden having her find a red flower, a

purple flower. It's neat stuff, but I'm anxious for real coversation

too. Hang in there.

>

> Blessings-

>

[Guest guest]

Kaye,

My son is starting to do the same thing with his noises. He will say parts of

the words and not always the right way. I am now figuring out what they are.

This is a first. I thought my son would never get this far. We are on day three

of the peptizyde and hoping for some great things. I have not ventured off the

gfcf diet yet. I wanted to start slowly. I will wait a couple more days and

start with the wheat first. I know he has a problem with milk for sure.

Thanks for listening.

Stacey

[ ] Re: Logan Update

I tried giving him dairy while he was taking the Serenaid and he got

the constant runny nose and the crabbiness so he went back on the

diet. I was too afraid to test the gluten because it takes him so

long to recover from an infraction, but since chelating and getting

the " improved " enzymes (as I like to think of them) I thought we

should try. So far so good.

The non verbal issue is the hardest part for me too. Every time I

think I may never hear him say my name I break down. But he seems to

be understanding language more, so I have high hopes. I can't

remember where I had posted this before, so bear with me if you've

already heard this, but I think he is saying things, just in a way I

can't understand. I starting thinking this because the other day we

were going to Mcs to get his fries and he was making his

usual " iungee " sound in his sing-song voice when all of a sudden I

could swear I heard him say " I'm hungry " in the middle of the gibber-

gabber. I told him " I know you're hungry. " Now every time I hear

that " iungee " I assume that's what he's trying to say. It makes me

sad to think he's been trying to talk all along, but can't get the

words out right. How frustrating that must be for him. On the other

hand, if he was able to get the " I'm hungry " out.... Keeping my

fingers crossed for this too.

> Kaye,

>

> This is so great! Unsolicited hugs are just the best thing. I

can't

> wait to hear if the language progresses, too. Did you ever take

him

> off the diet completely with the SerenAid?

>

>

[Guest guest]

Kaye,

Don't feel bad, just do what I call " narrating " . You simply can't

always know what your child is saying, so just describe eveything he

does and sees (within reason, don't burn yourself and him out). Use

simpler, but descriptive sentences like you see in books written for

toddlers, such as, " This is a ball. I threw the ball. Ball. You

caught the red ball! " In my opinion, language first, articulation

later. If you focus too much on the pronunciation, your child may

clam up from the pressure. I do think it is important to pronounce

words carefully as a model, though, just as others have suggested.

Also, don't talk too fast. You want to sound natural, but slow

enough for your words to be processed.

> > Kaye-

> >

> > I agree with Dana as I'm going through the same thing with my

just

> turned 3 yo. Taryn's been babbling for months with all sorts of new

> sounds. We spent 5 months in speech trying to get those " more " " go "

> and " all done " signs to no avail. Now we just finshed our third

month

> with our Nuerodevelelopmentalist and she's going " Bob, Bob "

pointing

> to anything that looks like her favorite veggie tale character, as

> well as words like " ow-si " outside. Her ND says to copy her sounds

> and shape them into the closest sounding real words. She also is

> demonstrating knowing more than she can say. Lately she's learned

her

> colors- I was having her point to the correct flash card- then I

saw

> her cousins walking her in a garden having her find a red flower, a

> purple flower. It's neat stuff, but I'm anxious for real

coversation

> too. Hang in there.

> >

> > Blessings-

> >

[Guest guest]

:

Those pictures are absolutely beautiful, especially the mirror

picture, thanks for sharing them. I can see little Logan hasn't

missed many meals - LOL, he's skinny compared to my Abby at 6 mos,

she weighed 23 lbs and was 26.5 " ....WAY off the chart for a 6 mos old

girl!!!

It sounds like the appt with the ped. went well - that's great. It

sure does make it easier when your ped. doesn't give you any grief

about your decision to band.

I hope you get an approval from your ins. soon! Let us know. So his

casting appt is next week already? He's on his way to a rounder head.

Debbie Abby's mom DOCgrad

MI

In Plagiocephaly@y..., " iammichelle " <iammichelle@e...> wrote:

> We just got back from the ped. He weighs 21 lb, 9 1/2 oz!!!!!!!

That's

> the 96 percentile. Height, 26 1/4 " . She said he looks healthy! I

> thought for a minute she was going to try and talk me out of the

helmet.

> She said " So, how decided are you on this helmet? " And I said " very

> decided. " I told her that the doctors at the hospital need to be

more

> proactive about telling parents how to prevent this. I will bring

her a

> packet from CT next time I see her.

>

> I called Wanda at CT today to see what was up with insurance. She

said

> she had been calling every day and talked to a supervisor today.

They

> said they had called the neurosurgeon to get more info and were

waiting

> for a call back from them. I scheduled a casting date for the 8th

> instead of the 1st, just in case. I will not put it off past then

> though. So, pray that tomorrow we get approved so Logan can be

casted

> on Thursday!

>

> /Logan 5.75 months

> PA

[Guest guest]

-

OMG! I want to squeeze those cheeks and zerbert that belly! He is

too cute!

Dane's belly used to hang over his diaper like that. That all

disappeared when he hit his 9 month growth spurt. Now he's lean and

long! I miss blowing zerberts on that tummy though!

Keeping my fingers crossed on the casting. Dane got his band at 5

months. It was a great time for progress!

Dane's mom DOC Grad

> We just got back from the ped. He weighs 21 lb, 9 1/2 oz!!!!!!!

That's

> the 96 percentile. Height, 26 1/4 " . She said he looks healthy! I

> thought for a minute she was going to try and talk me out of the

helmet.

> She said " So, how decided are you on this helmet? " And I

said " very

> decided. " I told her that the doctors at the hospital need to be

more

> proactive about telling parents how to prevent this. I will bring

her a

> packet from CT next time I see her.

>

> I called Wanda at CT today to see what was up with insurance. She

said

> she had been calling every day and talked to a supervisor today.

They

> said they had called the neurosurgeon to get more info and were

waiting

> for a call back from them. I scheduled a casting date for the 8th

> instead of the 1st, just in case. I will not put it off past then

> though. So, pray that tomorrow we get approved so Logan can be

casted

> on Thursday!

>

> /Logan 5.75 months

> PA

[Guest guest]

Hi ,

Logan is so cute! He's a big boy! He out weighs and she just

turned 1. LOL

He's too cute, I want to pinch his cheeks!!

Thanks for sharing!

> We just got back from the ped. He weighs 21 lb, 9 1/2 oz!!!!!!!

That's

> the 96 percentile. Height, 26 1/4 " . She said he looks healthy! I

> thought for a minute she was going to try and talk me out of the

helmet.

> She said " So, how decided are you on this helmet? " And I said " very

> decided. " I told her that the doctors at the hospital need to be

more

> proactive about telling parents how to prevent this. I will bring

her a

> packet from CT next time I see her.

>

> I called Wanda at CT today to see what was up with insurance. She

said

> she had been calling every day and talked to a supervisor today.

They

> said they had called the neurosurgeon to get more info and were

waiting

> for a call back from them. I scheduled a casting date for the 8th

> instead of the 1st, just in case. I will not put it off past then

> though. So, pray that tomorrow we get approved so Logan can be

casted

> on Thursday!

>

> /Logan 5.75 months

> PA

[Guest guest]

Holy cow! 23 lbs? THat IS big, esp for a girl. I love all of his

rolls!

-/Logan5.75 mnth

PA

-

> > We just got back from the ped. He weighs 21 lb, 9 1/2 oz!!!!!!!

> That's

> > the 96 percentile. Height, 26 1/4 " . She said he looks healthy!

I

> > thought for a minute she was going to try and talk me out of the

> helmet.

> > She said " So, how decided are you on this helmet? " And I

said " very

> > decided. " I told her that the doctors at the hospital need to be

> more

> > proactive about telling parents how to prevent this. I will

bring

> her a

> > packet from CT next time I see her.

> >

> > I called Wanda at CT today to see what was up with insurance.

She

> said

> > she had been calling every day and talked to a supervisor today.

> They

> > said they had called the neurosurgeon to get more info and were

> waiting

> > for a call back from them. I scheduled a casting date for the 8th

> > instead of the 1st, just in case. I will not put it off past then

> > though. So, pray that tomorrow we get approved so Logan can be

> casted

> > on Thursday!

> >

> > /Logan 5.75 months

> > PA

[Guest guest]

,

Logan's helmet looks awesome. Are those stickers/decals are did you

paint the designs and letters?

BTW: Logan is such a cutie!

Kristi

(4) and (1yr on Mon - banded 9/14/02)

OH

> We went to CT for Logans 4 week check this week. They were so

impressed

> with his decorations, took his picture and they want to put

him in

> the " decorating book " as an example! I was a proud mama!

>

> I got to see his headsicle. So interesting. So deformed! But

> Charlotte pointed out places that have been rounding, and he needed

more

> shaved. So that's good. I asked her if she thought he would need a

> second band and she said she didn't think so! I also asked her to

> measure again. He has gone down a few millimeters since he was

measured

> in July. His ears are only 10 mm apart now!

>

> -/Logan 7.5 months

> Banded 8/21/02