Re: New To Group - NEED HELP / ADVICE

[Guest guest]

I noticed that she has a g-tube, was this due to feeding issues? Did she have a

trach as well? For how long?

Just trying to get the whole picture...

[ ] New To Group - NEED HELP / ADVICE

Hello

I just recently joined this group. We are in the San , CA area. I have a 5

1/2 year old daughter, currently non verbal, has been diagnosed with a

chromosomal 16 abnormality, on the ASD spectrum (PDD/NOS), and most recently,

Apraxia. She has also has a g-tube since birth but with the grace of God, has

been 100% oral eater for 5 months now. We hope to get the tube removed soon.

Recently started the GFCF diet and also under the care of a DAN doctor (Dr

Traver). We did all the standard bloodwork, urine, hair and stool testing that

DAN doctors do. Was given 10 supplements and instructed to start a new one every

4 days. We were on 1500 mg of Vitamin C, Probiotics and Multi-vitamins only

after being a month on this supplements. My daughter just couldn't take some of

this stuff and would have diarrhea often. Also, we noticed some new behavior

emerged, more irritability, more tantrums, more crying for no reason, etc. I

stopped the 3 supplements yesterday to see if the behavior improves or not.

Anyway, I joined this group because I really want to address the APRAXIA issue.

I just feel like we are not doing enough to address this issue. We do the

traditional speech therapy once a week. That's it. Well, of course, she has

school, OT, and ABA to address other issues.

My daughter has no words and has a really difficult time imitating correctly.

She learns a new sound and loses another. by the way, we are also doing OMEGA

3-6-9 (Nordic Naturals) for 6 months now for about 5ml a day. Is this enough ?

Sorry for asking such stupid questions but I really just need to know what else

I can do to treat this apraxia. What have you done with your children that

worked ? I honestly don't know much about the treatment of it and I want to get

educated at what's out there and available. ANY ANY SUGGESTIONS IS MUCH

APPRECIATED. Ie - therapies, supplements, books, videos, resources, great

therapist in the area, anything and everything that might help.

I've also heard of B12 shots. What is that ?

Thanks so much in advance for your help!!

God Bless,

Beth

[Guest guest]

Hi ,

 

She had feeding issues since birth but after doing years of feeding therapy, we

were able to transition to oral feedings completely. She has not need the tube

at all for 5 months. We will be removing it as soon as she gains some weight!

 

The tube was placed at 3 months of age bec the docs thought she was aspirating

and had trouble in the NICU with the whole suck/swallow/breathe coordination.

She just couldn't finish a bottle. It was a long journey to get here but I

finally see the light at the end of the tunnel. Although, we are still

struggling with chewing...it's very slow progress in this dept.

 

We are seeing Clinic4Kids with Dr Patel. She was instrumental in helping Kayla

get off the tube.

 

Thanks

[Guest guest]

Hi-

I can tell you that the apraxia is holding her back in this area... my daughter

also struggled with bottle feeding, and still has trouble with some solids.

Have you bought " The Late Talker " yet? That is where I would start.

[ ] RE: new To Group - NEED HELP / ADVICE

Hi ,

She had feeding issues since birth but after doing years of feeding therapy, we

were able to transition to oral feedings completely. She has not need the tube

at all for 5 months. We will be removing it as soon as she gains some weight!

The tube was placed at 3 months of age bec the docs thought she was aspirating

and had trouble in the NICU with the whole suck/swallow/breathe coordination.

She just couldn't finish a bottle. It was a long journey to get here but I

finally see the light at the end of the tunnel. Although, we are still

struggling with chewing...it's very slow progress in this dept.

We are seeing Clinic4Kids with Dr Patel. She was instrumental in helping Kayla

get off the tube.

Thanks

[Guest guest]

Hi Beth -

I don't really have any advice, but just wanted to say " hi " as my son shares a

few of the same issues as your daughter... My son is Landon and he is 2 1/2

years old. We have suspected oral/verbal Apraxia since he was about 16 months

old, thanks to a super-smart SLP who was attempting to help him with some

feeding issues. We learned at 5 months of age that he was aspirating and had a

severe swallow delay and he's been on thickened liquids ever since. We had

difficulty transitioning from stage 1 baby foods and when he was 18 months, a

g-tube was first brought up. We did fight the tube and instead brought in a

well-respected feeding therapist (also SLP) who works with him twice a week. He

still only has about 5 things that he will eat on a very inconsistent basis -

and by inconsistent I mean I have no idea if what he eats today he will eat

tomorrow or next week. He also struggles to drink from a cup and a good day is

drinking more than 2 oz. The bulk of his nutrition comes from bottles of

Pediasure (8 oz/4xday) and as long as he continues to drink from a bottle, he

will stay off the feeding tube. He has been able to maintain his weight over

the past year so that is good.

My son has been a bit of a medical challenge for the doctors he has seen. He is

scheduled to see a geneticist in July and we are taking him to Mayo in August.

He has made incredible gains in speech and currently only has about a 6 month

expressive language delay. Currently he receives speech therapy twice a week,

feeding therapy twice a week, occupational therapy (low muscle tone + sensory

issues) once a week, and nutrition services once a month - all through early

intervention. We also recently started taking him to a social/speech " play

group " which is facilitated by several SLPs as well as a " fun with foods "

feeding group through a local therapy center.

Welcome to the group!!!

[Guest guest]

Thank you, . What really helped my daughter was intensive feeding therapy

with Dr Patel. If you want more info about her, let me know.

 

Best of luck with your son...Hope the genetist appt goes well...

[Guest guest]

My 8YO daughter started using sign at 1yr old. They used that and pic systems in

prek. When she entered our school district--the SLP there used Kaufman and

Prompt and whatever she had to! It was than she started speaking two-word

sentences by late winter of that year! She's only gotten better since. Never did

supplements.She's speaking 7-10 word sentences now.

She got two communication devices to ease and limit frustration--one at 4yrs old

and a Dynavox at 5yrs old.

If you're interested theres also groups for Chromosome Disorders. Once you write

to the owner, they'll give you access to two for Chromsome

Deletions and Duplications. My daughter has one too.

http://www.chromodisorder.org/CDO/

>

> Hello

>

> I just recently joined this group. We are in the San , CA area. I have a 5

1/2 year old daughter, currently non verbal, has been diagnosed with a

chromosomal 16 abnormality, on the ASD spectrum (PDD/NOS), and most recently,

Apraxia.

[Guest guest]

Hi Beth!

In general if you don't see any progress in 6 months you should reevaluate

therapy, therapist and/or diagnosis. At 5 and a half one day a week of speech

therapy is not enough. You are in California which is notoriously a state where

no matter what the actual diagnosis the child is diagnosed with some sort of

autism -so what exactly are the symptoms of autism? Who diagnosed autism?

Apraxia/PDD?

If apraxia is suspected/diagnosed by the SLP a neurodevelopmental medical exam

is highly recommended. Here's some info from our brand new and almost finished

website

http://www.cherabfoundation.org/category/disorders/signs-and-symptoms

It's good to know if there are other " soft signs " like low tone, sensory or

motor planning issues in other areas of the body as now is the best time to

address them -and in most cases in our group they are mild.

Some of these things will be important for school years -so another question you

didn't bring up is placement and classification for the school. This past

school year was your child in a mulitsensory enriched preschool or first year of

kindergarten and if so what was the classification and placement (mainstream?)

A good example of how knowing about soft signs helps is when your child is in

1st grade they are expected to sit upright in a chair for a longer period of

time...if they have even mild low tone in the truncal area that makes it harder

for them so they'll lean on the desk. But in addition to academic reasons -if

there is weakness in the truncal area that can affect breath control which is

the basis of speech.

Have you read The Late Talker book? I co authored that with a

neurodevelopmental pediatrician and there is much in the way of " apraxia 101 "

basics in it to help with therapy, advocacy, frustration, fish oils, etc.

As far as GFCF- what is the reason for the diet? When I was put on it years ago

as a baby it's because I was diagnosed with celiac disease and almost died

-spent much of my infant life in and out of hospitals prior to being put on a

special diet which saved my life...but even today I hate that diet and wouldn't

DARE put my children on it unless they needed to be on it. I know what it's

like to grow up not being able to eat my friend's birthday cake, not being able

to share lunch, not being able to eat the pancakes for breakfast at the

sleepover, not being able to eat a cookie on the school trip to the bakery (I

just smelled the air and was in heaven!!!) etc. I also know again it saves

lives when needed and there are many more options out there today than when I

was little -but my mom is GFCF and the options still taste gross for the most

part to me and I pray I never have to go on that diet again but there is a

chance I will when older but I'll do all I can to prevent it (can you tell how

much I hate it?) Due to herd mentality or something however people now assume

if your child is a late talker= GFCF and that's just plain wrong on so many

levels to me. To me the goal is to help our children get up to speed as soon as

possible and help them blend into the mainstream in school and life. Anything

is possible but special diets don't always go hand in hand with " blending "

When you say:

" Was given 10 supplements and instructed to start a new one every

4 days. We were on 1500 mg of Vitamin C, Probiotics and Multi-vitamins only

after being a month on this supplements. My daughter just couldn't take some of

this stuff and would have diarrhea often. Also, we noticed some new behavior

emerged, more irritability, more tantrums, more crying for no reason, etc. I

stopped the 3 supplements yesterday to see if the behavior improves or not. "

I was never a huge fan of medicine chest filled with various supplements either

but today have my son on the following nutrients, shockingly for me way more

than ten.... and he is having AMAZING surges:

2 ProEFA and 1 ProEPA and the following whole foods

Whey Protein Isolates,

the following Amino Acids including ALL of the Essential Amino Acids:

Alanine, Arginine, Aspartic Acid, Cystin, Glutamic Acid, Glycine, Histidine,

Isoleucine, Leucine, Lysine, Methionine, Phenylalanine, Proline, Serine,

Thereonine, Trytophan, Tyrosine, and Valine,

Rice Life powder (Brown Rice),

Natural Cocoa Powder,

Apple Fiber,

Organic Cane Sugar, Proprietary

An ayurvedic blend of Guggul, Amalaki, Green Tea, Haritaki, Turmeric, Gymnerma,

and believe it or not Cayenne Pepper!,

Xanthan Gum,

Stevia,

L-Taurine,

L-Theanine

~~~~~~~~~~~~~

Translate -2 scoops of chocolate nutriiveda or what my son now considers

" chocolate milk " a whole food source of nutrients and all the essential amino

acids for the past few months like many here and having amazing surges in the

following areas http://pursuitofresearch.org/pursuit.html Here are some

theories why http://pursuitofresearch.org/science.html Here is info you can

share with your DAN or pediatrician on what's in this

http://pursuitofresearch.org/NutriiVeda_Information.pdf and here are some

testimonies from this group http://pursuitofresearch.org/testimonials.html Once

on if you check the nutrients from the whole foods

http://pursuitofresearch.org/ingredients.html most of us can stop all other

supplements outside of fish oils and anything that is medical necessary. Life is

complicated enough without having to give your child 10 separate supplements and

looking to add more!

The difference between you adding supplements instead of supplying the necessary

and essential nutrients and essential amino acids from whole food sources is

that the body isn't always able to utilize the nutrient without another, and

that other...may need another etc. That's why you need a balance and why whole

food sources are the purest and best. Also nutriiveda is 100 percent water

soluble as well as 100 percent natural, gluten, casein, fat, sodium, caffeine

free and each whole food ingredient is tested free of any heavy metals,

herbicides and pesticides. PLEASE look into this -I joke around but we have

seen almost across the board surges from all that try it and it comes with a

money back guarantee. http://www.pursuitofresearch.org

And moving from the essential amino acids and nutrients from whole food sources

to the essential fatty acids- also highly important..

As far as that fish oil vitamin - Here's a page on fish oil 101

http://www.facebook.com/topic.php?uid=115029735601 & topic=7401 from our

apraxia.org page It's kind of a myth that we as parents think there is such a

thing as a children's fish oil. The dosage of EFA approved for infant formula is

about the same dosage that is in one regular sized capsule of ProEFA (which is

one of the brands we use with success in this group)

There is so much in the way of basic apraxia info in the discussion board

section at http://www.apraxia.org as well as at our other sites

http://www.cherabfoundation.org and we have this group, one at Big Tent and

Twitter @thelatetalker

Hope that helps for now!

=====

[Guest guest]

>

> Hi Beth!

>

> In general if you don't see any progress in 6 months you should reevaluate

therapy, therapist and/or diagnosis. At 5 and a half one day a week of speech

therapy is not enough. You are in California which is notoriously a state where

no matter what the actual diagnosis the child is diagnosed with some sort of

autism -so what exactly are the symptoms of autism? Who diagnosed autism?

Apraxia/PDD?

>

> If apraxia is suspected/diagnosed by the SLP a neurodevelopmental medical exam

is highly recommended. Here's some info from our brand new and almost finished

website

> http://www.cherabfoundation.org/category/disorders/signs-and-symptoms

>

> It's good to know if there are other " soft signs " like low tone, sensory or

motor planning issues in other areas of the body as now is the best time to

address them -and in most cases in our group they are mild.

>

> Some of these things will be important for school years -so another question

you didn't bring up is placement and classification for the school. This past

school year was your child in a mulitsensory enriched preschool or first year of

kindergarten and if so what was the classification and placement (mainstream?)

>

> A good example of how knowing about soft signs helps is when your child is in

1st grade they are expected to sit upright in a chair for a longer period of

time...if they have even mild low tone in the truncal area that makes it harder

for them so they'll lean on the desk. But in addition to academic reasons -if

there is weakness in the truncal area that can affect breath control which is

the basis of speech.

>

> Have you read The Late Talker book? I co authored that with a

neurodevelopmental pediatrician and there is much in the way of " apraxia 101 "

basics in it to help with therapy, advocacy, frustration, fish oils, etc.

>

> As far as GFCF- what is the reason for the diet? When I was put on it years

ago as a baby it's because I was diagnosed with celiac disease and almost died

-spent much of my infant life in and out of hospitals prior to being put on a

special diet which saved my life...but even today I hate that diet and wouldn't

DARE put my children on it unless they needed to be on it. I know what it's

like to grow up not being able to eat my friend's birthday cake, not being able

to share lunch, not being able to eat the pancakes for breakfast at the

sleepover, not being able to eat a cookie on the school trip to the bakery (I

just smelled the air and was in heaven!!!) etc. I also know again it saves

lives when needed and there are many more options out there today than when I

was little -but my mom is GFCF and the options still taste gross for the most

part to me and I pray I never have to go on that diet again but there is a

chance I will when older but I'll do all I can to prevent it (can you tell how

much I hate it?) Due to herd mentality or something however people now assume

if your child is a late talker= GFCF and that's just plain wrong on so many

levels to me. To me the goal is to help our children get up to speed as soon as

possible and help them blend into the mainstream in school and life. Anything

is possible but special diets don't always go hand in hand with " blending "

>

> When you say:

> " Was given 10 supplements and instructed to start a new one every

> 4 days. We were on 1500 mg of Vitamin C, Probiotics and Multi-vitamins only

> after being a month on this supplements. My daughter just couldn't take some

of

> this stuff and would have diarrhea often. Also, we noticed some new behavior

> emerged, more irritability, more tantrums, more crying for no reason, etc. I

> stopped the 3 supplements yesterday to see if the behavior improves or not. "

>

>

> I was never a huge fan of medicine chest filled with various supplements

either but today have my son on the following nutrients, shockingly for me way

more than ten.... and he is having AMAZING surges:

>

> 2 ProEFA and 1 ProEPA and the following whole foods

>

> Whey Protein Isolates,

> the following Amino Acids including ALL of the Essential Amino Acids:

> Alanine, Arginine, Aspartic Acid, Cystin, Glutamic Acid, Glycine, Histidine,

Isoleucine, Leucine, Lysine, Methionine, Phenylalanine, Proline, Serine,

Thereonine, Trytophan, Tyrosine, and Valine,

> Rice Life powder (Brown Rice),

> Natural Cocoa Powder,

> Apple Fiber,

> Organic Cane Sugar, Proprietary

> An ayurvedic blend of Guggul, Amalaki, Green Tea, Haritaki, Turmeric,

Gymnerma, and believe it or not Cayenne Pepper!,

> Xanthan Gum,

> Stevia,

> L-Taurine,

> L-Theanine

>

> ~~~~~~~~~~~~~

>

> Translate -2 scoops of chocolate nutriiveda or what my son now considers

" chocolate milk " a whole food source of nutrients and all the essential amino

acids for the past few months like many here and having amazing surges in the

following areas http://pursuitofresearch.org/pursuit.html Here are some

theories why http://pursuitofresearch.org/science.html Here is info you can

share with your DAN or pediatrician on what's in this

http://pursuitofresearch.org/NutriiVeda_Information.pdf and here are some

testimonies from this group http://pursuitofresearch.org/testimonials.html Once

on if you check the nutrients from the whole foods

http://pursuitofresearch.org/ingredients.html most of us can stop all other

supplements outside of fish oils and anything that is medical necessary. Life is

complicated enough without having to give your child 10 separate supplements and

looking to add more!

>

> The difference between you adding supplements instead of supplying the

necessary and essential nutrients and essential amino acids from whole food

sources is that the body isn't always able to utilize the nutrient without

another, and that other...may need another etc. That's why you need a balance

and why whole food sources are the purest and best. Also nutriiveda is 100

percent water soluble as well as 100 percent natural, gluten, casein, fat,

sodium, caffeine free and each whole food ingredient is tested free of any heavy

metals, herbicides and pesticides. PLEASE look into this -I joke around but we

have seen almost across the board surges from all that try it and it comes with

a money back guarantee. http://www.pursuitofresearch.org

>

> And moving from the essential amino acids and nutrients from whole food

sources to the essential fatty acids- also highly important..

>

> As far as that fish oil vitamin - Here's a page on fish oil 101

> http://www.facebook.com/topic.php?uid=115029735601 & topic=7401 from our

apraxia.org page It's kind of a myth that we as parents think there is such a

thing as a children's fish oil. The dosage of EFA approved for infant formula is

about the same dosage that is in one regular sized capsule of ProEFA (which is

one of the brands we use with success in this group)

>

> There is so much in the way of basic apraxia info in the discussion board

section at http://www.apraxia.org as well as at our other sites

http://www.cherabfoundation.org and we have this group, one at Big Tent and

Twitter @thelatetalker

>

> Hope that helps for now!

>

> =====

>