new to the group

[Guest guest]

Thanks Sloan. We are planning to see him soon.

What were some of the lab work or other history that pushed you to go see Dr G?

________________________________

From: Sloan <Sloan_smith@...>

Sent: Tue, July 27, 2010 2:41:25 PM

Subject: Re: New to the group

I think there is only Dr. Goldberg in LA and Dr. in TX. Dr. G is very

opposed to chelation and believes it is very dangerous. Be prepared to throw

everything you thought you knew from the DAN doc out the window if you go to Dr.

G. We did and our son has never been better! (he has been with Dr. G for 4

months). My son is on a different anti-viral so I cant tell you dosage.

>

> Hello, We are new to the group. Our 3.5 old has been getting DAN treatment for

> just under a year. We have been on Valtrex prescribed through the same doctor

> for about 3 weeks. We saw some significant changes in the first week which

> included more speech, eye contact, more awareness & assertiveness. We have not

> done any Viral tests or brain imaging but would like to consult a doctor who

is

>

> an expert in . I have a few questions for those who saw improvement on

> Valtrex:

> 1) Have folks done both Valtrex & Chelation and seen improvement

> 2) What dosage did you use for Valtrex (abt 36 lbs)? Is it always given with

an

>

> anti-fungal like Diflucan?

> 3) Like Dr G are there doctors in the Northern CA area that have a lot of

> clinical experience in this?

>

>

> Thanks very much for the help.

>

>

>

>

>

[Guest guest]

Sure! He is still doing very well. We have run into some bumps, which everyone

warned me about. I have finally accepted that this isn't an overnight fix, that

doesn't exist and the most important thing is to see the big picture: your

child's immune health. My son just turned six last week. He was diagnosed

PDD-NOS with sensory processing disorder and mixed language disorder when he was

4... In his case, he did not have any signs or symptoms until he was 4. He was

always verbal and in my opinion normal until he got sick two summers ago. After

that he spiraled downward with bad GI issues, total spaciness, anger, withdrawn,

tantrums, etc.

He has been with Dr. G since April and prior to that was seeing a DAN doc and a

Lyme doc who had him on many supplements and homeopathic remedies.

The first improvement we saw was taking him off all the supplements (as Dr. G

does with all his patients). His allergic reactions (red ears, moodiness)

stopped almost immediately.

So, I really do believe what Dr. G says about most supplements: they have the

potential to rev up the immune system in a bad way.

Next improvement: Decreased anxiety and social improvement, especially with

initiation of social exchanges. He is still functioning at a immature level

compared to his peers, but he is playing with kids now, not fearing them! He

tends to tease or annoy to get attention from other kids, but we are working on

that. We have taken a really hard line with that and it seems to be working.

Quoting his speech therapist who I emailed and asked what she thought of him in

the last 2 months:

" He has clearly presented with positive shift towards decreased social anxiety.

The anxiety remains, but clearly a change is present to support increased

initiation, increased sustained engagement, and decreased negative social

patters which were mostly volitional as a means to cope w anxiety. "

I also see him thinking better, asking questions, putting 2 and 2 together.

BUT he also has become a little obsessive about signs and symbols, and knowing

how to spell things... im not sure what to make of this. If it is newfound

recognition that signs and symbols mean something (and letters: he is learning

to spell at an astonishing rate)... or if it is borderline OCD. He talks about

them quite a bit.

He was on Famvir, but that didn't touch any of his viral titers so Dr. G moved

him to Acyclovir 5x day. Looking at his blood work: it had reduced the HHV-6, I

& II viruses to negative, but the CMV continues to go up. Dr. G may change it

again.

Paxil: we started with the tiniest amount and slowly moved his dose up per Dr.

G. He has responded very well. We have gotten to 5mg in the a.m. and he is where

we ran into some bumps... he is HYPER at night. He just cant turn his brain off,

despite going to camp and swim team during the day and running around in this

heat! He has been up to midnight, literally doing summersaults down the hallway!

Then he is hard to wake up in the morning and cranky. We want to scale back on

the Paxil but Dr. G wants us to hold on for a bit and try some allergy meds at

night.

Next: His GI issue have gone! When we first went to Dr. G we were having to give

him enemas a couple times a week because he was so constipated... not he is

pretty much regular.

Wishing the best to all of your children too!, Sloan

> >

> > Hello, We are new to the group. Our 3.5 old has been getting DAN treatment

for

>

> > just under a year. We have been on Valtrex prescribed through the same

doctor

> > for about 3 weeks. We saw some significant changes in the first week which

> > included more speech, eye contact, more awareness & assertiveness. We have

not

>

> > done any Viral tests or brain imaging but would like to consult a doctor who

is

> >

> > an expert in . I have a few questions for those who saw improvement on

> > Valtrex:

> > 1) Have folks done both Valtrex & Chelation and seen improvement

> > 2) What dosage did you use for Valtrex (abt 36 lbs)? Is it always given with

an

> >

> > anti-fungal like Diflucan?

> > 3) Like Dr G are there doctors in the Northern CA area that have a lot of

> > clinical experience in this?

> >

> >

> > Thanks very much for the help.

> >

> >

> >

> >

> >

[Guest guest]

Thank you sooo much for taking the time to reply. I really appreciate it. So

glad to hear of his improvements. Night time sounds exhausting!

Can your son swallow pills? And it must be hard to give the Acyclovir 5x per

day!!! Yikes!

Please give me updates. I am weighing everything I read on the list.

Thank you Again and wishing you success!

Sheryl

Sent from my iPhone

On Jul 28, 2010, at 7:38 AM, " Sloan " <Sloan_smith@...> wrote:

Sure! He is still doing very well. We have run into some bumps, which everyone

warned me about. I have finally accepted that this isn't an overnight fix, that

doesn't exist and the most important thing is to see the big picture: your

child's immune health. My son just turned six last week. He was diagnosed

PDD-NOS with sensory processing disorder and mixed language disorder when he was

4... In his case, he did not have any signs or symptoms until he was 4. He was

always verbal and in my opinion normal until he got sick two summers ago. After

that he spiraled downward with bad GI issues, total spaciness, anger, withdrawn,

tantrums, etc.

He has been with Dr. G since April and prior to that was seeing a DAN doc and a

Lyme doc who had him on many supplements and homeopathic remedies.

The first improvement we saw was taking him off all the supplements (as Dr. G

does with all his patients). His allergic reactions (red ears, moodiness)

stopped almost immediately.

So, I really do believe what Dr. G says about most supplements: they have the

potential to rev up the immune system in a bad way.

Next improvement: Decreased anxiety and social improvement, especially with

initiation of social exchanges. He is still functioning at a immature level

compared to his peers, but he is playing with kids now, not fearing them! He

tends to tease or annoy to get attention from other kids, but we are working on

that. We have taken a really hard line with that and it seems to be working.

Quoting his speech therapist who I emailed and asked what she thought of him in

the last 2 months:

" He has clearly presented with positive shift towards decreased social anxiety.

The anxiety remains, but clearly a change is present to support increased

initiation, increased sustained engagement, and decreased negative social

patters which were mostly volitional as a means to cope w anxiety. "

I also see him thinking better, asking questions, putting 2 and 2 together.

BUT he also has become a little obsessive about signs and symbols, and knowing

how to spell things... im not sure what to make of this. If it is newfound

recognition that signs and symbols mean something (and letters: he is learning

to spell at an astonishing rate)... or if it is borderline OCD. He talks about

them quite a bit.

He was on Famvir, but that didn't touch any of his viral titers so Dr. G moved

him to Acyclovir 5x day. Looking at his blood work: it had reduced the HHV-6, I

& II viruses to negative, but the CMV continues to go up. Dr. G may change it

again.

Paxil: we started with the tiniest amount and slowly moved his dose up per Dr.

G. He has responded very well. We have gotten to 5mg in the a.m. and he is where

we ran into some bumps... he is HYPER at night. He just cant turn his brain off,

despite going to camp and swim team during the day and running around in this

heat! He has been up to midnight, literally doing summersaults down the hallway!

Then he is hard to wake up in the morning and cranky. We want to scale back on

the Paxil but Dr. G wants us to hold on for a bit and try some allergy meds at

night.

Next: His GI issue have gone! When we first went to Dr. G we were having to give

him enemas a couple times a week because he was so constipated... not he is

pretty much regular.

Wishing the best to all of your children too!, Sloan

> >

> > Hello, We are new to the group. Our 3.5 old has been getting DAN treatment

for

>

> > just under a year. We have been on Valtrex prescribed through the same

doctor

> > for about 3 weeks. We saw some significant changes in the first week which

> > included more speech, eye contact, more awareness & assertiveness. We have

not

>

> > done any Viral tests or brain imaging but would like to consult a doctor who

is

> >

> > an expert in . I have a few questions for those who saw improvement on

> > Valtrex:

> > 1) Have folks done both Valtrex & Chelation and seen improvement

> > 2) What dosage did you use for Valtrex (abt 36 lbs)? Is it always given with

an

> >

> > anti-fungal like Diflucan?

> > 3) Like Dr G are there doctors in the Northern CA area that have a lot of

> > clinical experience in this?

> >

> >

> > Thanks very much for the help.

> >

> >

> >

> >

> >

[Guest guest]

When we were seeing a DAN doctor T was taking thirty pills a day. He is a

trouper.

Sent from my iPhone

On Jul 28, 2010, at 12:40 PM, Sheryl <ssaturnino@...> wrote:

Thank you sooo much for taking the time to reply. I really appreciate it. So

glad to hear of his improvements. Night time sounds exhausting!

Can your son swallow pills? And it must be hard to give the Acyclovir 5x per

day!!! Yikes!

Please give me updates. I am weighing everything I read on the list.

Thank you Again and wishing you success!

Sheryl

Sent from my iPhone

On Jul 28, 2010, at 7:38 AM, " Sloan " <Sloan_smith@...> wrote:

Sure! He is still doing very well. We have run into some bumps, which everyone

warned me about. I have finally accepted that this isn't an overnight fix, that

doesn't exist and the most important thing is to see the big picture: your

child's immune health. My son just turned six last week. He was diagnosed

PDD-NOS with sensory processing disorder and mixed language disorder when he was

4... In his case, he did not have any signs or symptoms until he was 4. He was

always verbal and in my opinion normal until he got sick two summers ago. After

that he spiraled downward with bad GI issues, total spaciness, anger, withdrawn,

tantrums, etc.

He has been with Dr. G since April and prior to that was seeing a DAN doc and a

Lyme doc who had him on many supplements and homeopathic remedies.

The first improvement we saw was taking him off all the supplements (as Dr. G

does with all his patients). His allergic reactions (red ears, moodiness)

stopped almost immediately.

So, I really do believe what Dr. G says about most supplements: they have the

potential to rev up the immune system in a bad way.

Next improvement: Decreased anxiety and social improvement, especially with

initiation of social exchanges. He is still functioning at a immature level

compared to his peers, but he is playing with kids now, not fearing them! He

tends to tease or annoy to get attention from other kids, but we are working on

that. We have taken a really hard line with that and it seems to be working.

Quoting his speech therapist who I emailed and asked what she thought of him in

the last 2 months:

" He has clearly presented with positive shift towards decreased social anxiety.

The anxiety remains, but clearly a change is present to support increased

initiation, increased sustained engagement, and decreased negative social

patters which were mostly volitional as a means to cope w anxiety. "

I also see him thinking better, asking questions, putting 2 and 2 together.

BUT he also has become a little obsessive about signs and symbols, and knowing

how to spell things... im not sure what to make of this. If it is newfound

recognition that signs and symbols mean something (and letters: he is learning

to spell at an astonishing rate)... or if it is borderline OCD. He talks about

them quite a bit.

He was on Famvir, but that didn't touch any of his viral titers so Dr. G moved

him to Acyclovir 5x day. Looking at his blood work: it had reduced the HHV-6, I

& II viruses to negative, but the CMV continues to go up. Dr. G may change it

again.

Paxil: we started with the tiniest amount and slowly moved his dose up per Dr.

G. He has responded very well. We have gotten to 5mg in the a.m. and he is where

we ran into some bumps... he is HYPER at night. He just cant turn his brain off,

despite going to camp and swim team during the day and running around in this

heat! He has been up to midnight, literally doing summersaults down the hallway!

Then he is hard to wake up in the morning and cranky. We want to scale back on

the Paxil but Dr. G wants us to hold on for a bit and try some allergy meds at

night.

Next: His GI issue have gone! When we first went to Dr. G we were having to give

him enemas a couple times a week because he was so constipated... not he is

pretty much regular.

Wishing the best to all of your children too!, Sloan

> >

> > Hello, We are new to the group. Our 3.5 old has been getting DAN treatment

for

>

> > just under a year. We have been on Valtrex prescribed through the same

doctor

> > for about 3 weeks. We saw some significant changes in the first week which

> > included more speech, eye contact, more awareness & assertiveness. We have

not

>

> > done any Viral tests or brain imaging but would like to consult a doctor who

is

> >

> > an expert in . I have a few questions for those who saw improvement on

> > Valtrex:

> > 1) Have folks done both Valtrex & Chelation and seen improvement

> > 2) What dosage did you use for Valtrex (abt 36 lbs)? Is it always given with

an

> >

> > anti-fungal like Diflucan?

> > 3) Like Dr G are there doctors in the Northern CA area that have a lot of

> > clinical experience in this?

> >

> >

> > Thanks very much for the help.

> >

> >

> >

> >

> >

[Guest guest]

Well, since we had him with a DAN doc for a year he certainly learned to swallow

pills. So, yes... it s not a problem for him, but maybe you could crush them and

put them in a drink.

> > >

> > > Hello, We are new to the group. Our 3.5 old has been getting DAN treatment

for

> >

> > > just under a year. We have been on Valtrex prescribed through the same

doctor

> > > for about 3 weeks. We saw some significant changes in the first week which

> > > included more speech, eye contact, more awareness & assertiveness. We have

not

> >

> > > done any Viral tests or brain imaging but would like to consult a doctor

who is

> > >

> > > an expert in . I have a few questions for those who saw improvement on

> > > Valtrex:

> > > 1) Have folks done both Valtrex & Chelation and seen improvement

> > > 2) What dosage did you use for Valtrex (abt 36 lbs)? Is it always given

with an

> > >

> > > anti-fungal like Diflucan?

> > > 3) Like Dr G are there doctors in the Northern CA area that have a lot of

> > > clinical experience in this?

> > >

> > >

> > > Thanks very much for the help.

> > >

> > >

> > >

> > >

> > >

[Guest guest]

High viral titers to HHV6, CMV (some have EBV), chronically high monocytes,

positive for Lyme, and low NK cells.

> >

> > Hello, We are new to the group. Our 3.5 old has been getting DAN treatment

for

>

> > just under a year. We have been on Valtrex prescribed through the same

doctor

>

> > for about 3 weeks. We saw some significant changes in the first week which

> > included more speech, eye contact, more awareness & assertiveness. We have

not

>

> > done any Viral tests or brain imaging but would like to consult a doctor who

is

> >

> > an expert in . I have a few questions for those who saw improvement on

> > Valtrex:

> > 1) Have folks done both Valtrex & Chelation and seen improvement

> > 2) What dosage did you use for Valtrex (abt 36 lbs)? Is it always given with

an

> >

> > anti-fungal like Diflucan?

> > 3) Like Dr G are there doctors in the Northern CA area that have a lot of

> > clinical experience in this?

> >

> >

> > Thanks very much for the help.

> >

> >

> >

> >

> >

[Guest guest]

I put swallowing pills right up there with potty training in my list of

priorities. It didn’t take long for my 3 year old son to learn how to

swallow pills when we started with Dr. G and it made everyone’s life MUCH

easier.

Kristy Nardini

TazziniTM Stainless Steel Bottles

<http://www.tazzini.com/> http://www.tazzini.com

kristy@...

Phone: 858.243.1929

Fax: 858.724.1418

P Please consider the environment before printing this email.

From: [mailto: ] On Behalf Of Sloan

Sent: Thursday, July 29, 2010 7:04 AM

Subject: Re: New to the group

Well, since we had him with a DAN doc for a year he certainly learned to

swallow pills. So, yes... it s not a problem for him, but maybe you could

crush them and put them in a drink.

> > >

> > > Hello, We are new to the group. Our 3.5 old has been getting DAN

treatment for

> >

> > > just under a year. We have been on Valtrex prescribed through the same

doctor

> > > for about 3 weeks. We saw some significant changes in the first week

which

> > > included more speech, eye contact, more awareness & assertiveness. We

have not

> >

> > > done any Viral tests or brain imaging but would like to consult a

doctor who is

> > >

> > > an expert in . I have a few questions for those who saw

improvement on

> > > Valtrex:

> > > 1) Have folks done both Valtrex & Chelation and seen improvement

> > > 2) What dosage did you use for Valtrex (abt 36 lbs)? Is it always

given with an

> > >

> > > anti-fungal like Diflucan?

> > > 3) Like Dr G are there doctors in the Northern CA area that have a lot

of

> > > clinical experience in this?

> > >

> > >

> > > Thanks very much for the help.

> > >

> > >

> > >

> > >

> > >

[Guest guest]

maybe they can slide down easier w/applesauce

Re: New to the group

Well, since we had him with a DAN doc for a year he certainly learned to swallow

pills. So, yes... it s not a problem for him, but maybe you could crush them and

put them in a drink.

> > >

> > > Hello, We are new to the group. Our 3.5 old has been getting DAN treatment

for

> >

> > > just under a year. We have been on Valtrex prescribed through the same

doctor

> > > for about 3 weeks. We saw some significant changes in the first week which

> > > included more speech, eye contact, more awareness & assertiveness. We have

not

> >

> > > done any Viral tests or brain imaging but would like to consult a doctor

who is

> > >

> > > an expert in . I have a few questions for those who saw improvement on

> > > Valtrex:

> > > 1) Have folks done both Valtrex & Chelation and seen improvement

> > > 2) What dosage did you use for Valtrex (abt 36 lbs)? Is it always given

with an

> > >

> > > anti-fungal like Diflucan?

> > > 3) Like Dr G are there doctors in the Northern CA area that have a lot of

> > > clinical experience in this?

> > >

> > >

> > > Thanks very much for the help.

> > >

> > >

> > >

> > >

> > >

[Guest guest]

The late talker book is written by one of the list owners here and I highly

recommend it if you have not read it. I used my copy so much it's falling apart

LOL I remember when i was new here and I didn't know anything. I no longer

feel helpless thank you to the book and this group. In addition to learning

about what speech therapy is good and about I E P (sp?) we use proefa or omega

369 but mainly proefa and my pediatrician approved our son to use NV from

http://www.pursuitofresearch.org and so far all has helped my son greatly. you

are going to love this group! Welcome! Kate

>

> I am new to this group. I have a son who will be 3 in October and only speaks

about 5 words. He has been in speech therapy for a few months and our therapist

believes he has apraxia. I guess I am wanting to hear what this means from real

people, not books. I would love to hear how much therapy others are having, if

there is sucess in the near future, and if there are any dietary changes that

would help, like with austism.

>

[Guest guest]

Hi Mawgan and welcome!! On a super positive note about the UK- don't most

professionals refer to apraxia as dyspraxia? Here in the US some have started

referring to apraxia as " childhood apraxia of speech " and as you know

Radcliffe is probably the apraxia/dyspraxia world's hugest hero for our children

-and can you imagine instead of him coming out to say he has dyspraxia and still

has issues with things like tying his shoes that he had to say instead " I have

childhood dyspraxia of the body " I mean sounds really dumb right? (um it's the

same name they use here for speech -some do anyway)

There is so much hope for these kids, and you are right things work different as

far as how you can secure therapy etc. But the great thing is that in addition

to what the therapist can provide to you to do as " homework " (you do get that

right?) there are many fun and effective things to do at home to help your

child. Have you read the book I co authored -The Late Talker? Here's a clip of

parent tips I wrote for Contemporary Pediatrics which is the trade magazine for

pediatric medical professionals across the US which covers things to do at home

http://contemporarypediatrics.modernmedicine.com/contpeds/data/articlestandard//\

contpeds/492004/136315/article.pdf

I have a new member archive up on our http://www.apraxia.org page- and if you

check the discussion board there are other UK parents reaching out to meet

others. What's awesome about facebook is that you can ask the other parents to

be your friend- and it's your choice and theirs whether you do or don't " friend "

someone. But here's the new member archive

http://www.facebook.com/topic.php?uid=115029735601 & topic=13085 but there are so

many others if you check the discussion board topics at this site.

As far as " just " verbal apraxia -that's quite hard for any lay person, parent,

or regular pediatrician to know at your child's age. Apraxia in itself is not a

cognitive nor receptive impairment and these children know what is expected of

them and can typically at a young age push themselves to keep up -it's as they

age and what they need to keep up with is harder that they start to show signs

of breaking down -but you want to know as early as possible to benefit from

early intervention. This is why if apraxia is suspected our organization and as

we write in The Late Talker book highly recommend an appointment with either a

pediatric neurologist or developmental pediatrician to confirm or rule out " soft

signs " When you read the link above it covers soft signs there.

Since you are in the UK- you can also use EyeQ instead of ProEFA -from what I

have heard parents who have switched back and forth between the two have not

seen that much difference -and both are high quality. Dr. from

Oxford is behind the EyeQ -and she's extremely knowledgeable about the essential

fats. Why switch -just for cost. If you are in the UK Eye Q is cheaper because

it doesn't have to be shipped in -and in the US ProEFA is cheaper. Now as far

as raising the EPA -I'd still do that -but I'd have to check their line =or

perhaps just order the ProEPA but use the EyeQ instead of the ProEFA to save a

few pounds???

For nutriiveda or NV as we lovingly call it here now -yes there are a few

parents that are from the UK that are using it. But it's distributed through

direct sales and the company is not yet shipping direct to the UK, so the

shipping is a bit higher than it is for those of us in areas the company ships

to. If you order through this page

https://nutraeasy.com/pursuit/order_pursuit_intl.html we can get you an

estimate on shipping. We don't mark the shipping or the cost of the product up

-but even USPS rates are probably going to be at least around 40 US dollars to

ship (and then there are sometimes customs) Of course the reason people are

buying it international and paying so much for shipping is only because it's

working -and Bill Farley has promised us that he's planning on this company

shipping direct worldwide within 5 years- and I'd think UK would be one of the

first to be on the list!

By the way -LOVE the name Caleb!! Again welcome!!

=====

[Guest guest]

Hi and Sharon

Thank you so much for your emails! I'm sorry that it's taken a while to

reply, but we've been away.

I've taken on board your comments about NV and I'm very keen to try it, but

my husband is still hesitant. I " m going to keep directing him here to the

positive stories and hope that we can start Caleb on it soon. It's

wonderful to read the tales of improvement that many of you are experiencing

with your children.

Caleb is really starting to show some improvements with his speech and fine

motor skills. For about 1 year, he would only say 'n' and point at what he

was looking at, however he is really starting to try to copy words and we're

hearing new words regularly, although not necessarily spontaneously. This

is positive for us though, and shows that we may be finding a way to help

him to speak. I'm going to order the EPA today and combine them with the

ProEfa and it was interesting to read the story of Jonah, and all the work

that his parents are doing and the progress they are seeing. I need to sit

and read that in more detail.

Another improvement that we are seeing is his ability to do jigsaws and

shape sorting. Something has clicked and he is now finding these types of

puzzles much easier and therefore isn't getting frustrated. I need to keep

reminding myself that he is only 2.5 and it's normal for toddlers to not

want to sit and do stuff, but this seems to be changing for him now. I

think it's just his age, but maybe it's all connected to his verbal

dyspraxia.

He has such well developed gross motor skills and has spent most of the week

running around in an indoor play centre, climbing over obstacles designed

for much older children with no problems at all. It was wonderful to see

him playing in such a positive and accomplished way! He was exhausted

afterwards and wouldn't even go out for a short walk yesterday so I think

he's going to need a rest today!

As well as speech therapy, we're also doing some oral therapy using his

toothbrush and different foods. We are lucky in that unlike other children

with verbal dyspraxia, Caleb does not have the associated feeding issues,

and will eat almost anything and in considerable quanities. He's only 14.5

kg (about 30 lbs) but I think as he doesn't stop moving and growing he is a

very healthy weight and size. He's not fussy and will try lots of new

things and flavours so we've been using that to help strengthen his mouth

and that's definitely helping too. His tongue is less flat and it is even

turning slightly upwards towards his nose which is great!

Anyway, I'm finding this group a great place to discuss my son's progress

and find out new information that I can use to help him. I'm so grateful

for all the parents for sharing the stories of their children on here and I

hope that we all continue to see light at the end of the tunnel!

Best wishes

Mawgan

On 3 September 2010 14:57, kiddietalk <kiddietalk@...> wrote:

>

>

> Hi Mawgan and welcome!! On a super positive note about the UK- don't most

> professionals refer to apraxia as dyspraxia? Here in the US some have

> started referring to apraxia as " childhood apraxia of speech " and as you

> know Radcliffe is probably the apraxia/dyspraxia world's hugest hero

> for our children -and can you imagine instead of him coming out to say he

> has dyspraxia and still has issues with things like tying his shoes that he

> had to say instead " I have childhood dyspraxia of the body " I mean sounds

> really dumb right? (um it's the same name they use here for speech -some do

> anyway)

>

> There is so much hope for these kids, and you are right things work

> different as far as how you can secure therapy etc. But the great thing is

> that in addition to what the therapist can provide to you to do as

> " homework " (you do get that right?) there are many fun and effective things

> to do at home to help your child. Have you read the book I co authored -The

> Late Talker? Here's a clip of parent tips I wrote for Contemporary

> Pediatrics which is the trade magazine for pediatric medical professionals

> across the US which covers things to do at home

>

http://contemporarypediatrics.modernmedicine.com/contpeds/data/articlestandard//\

contpeds/492004/136315/article.pdf

>

> I have a new member archive up on our http://www.apraxia.org page- and if

> you check the discussion board there are other UK parents reaching out to

> meet others. What's awesome about facebook is that you can ask the other

> parents to be your friend- and it's your choice and theirs whether you do or

> don't " friend " someone. But here's the new member archive

> http://www.facebook.com/topic.php?uid=115029735601 & topic=13085 but there

> are so many others if you check the discussion board topics at this site.

>

> As far as " just " verbal apraxia -that's quite hard for any lay person,

> parent, or regular pediatrician to know at your child's age. Apraxia in

> itself is not a cognitive nor receptive impairment and these children know

> what is expected of them and can typically at a young age push themselves to

> keep up -it's as they age and what they need to keep up with is harder that

> they start to show signs of breaking down -but you want to know as early as

> possible to benefit from early intervention. This is why if apraxia is

> suspected our organization and as we write in The Late Talker book highly

> recommend an appointment with either a pediatric neurologist or

> developmental pediatrician to confirm or rule out " soft signs " When you read

> the link above it covers soft signs there.

>

> Since you are in the UK- you can also use EyeQ instead of ProEFA -from what

> I have heard parents who have switched back and forth between the two have

> not seen that much difference -and both are high quality. Dr.

> from Oxford is behind the EyeQ -and she's extremely knowledgeable about the

> essential fats. Why switch -just for cost. If you are in the UK Eye Q is

> cheaper because it doesn't have to be shipped in -and in the US ProEFA is

> cheaper. Now as far as raising the EPA -I'd still do that -but I'd have to

> check their line =or perhaps just order the ProEPA but use the EyeQ instead

> of the ProEFA to save a few pounds???

>

> For nutriiveda or NV as we lovingly call it here now -yes there are a few

> parents that are from the UK that are using it. But it's distributed through

> direct sales and the company is not yet shipping direct to the UK, so the

> shipping is a bit higher than it is for those of us in areas the company

> ships to. If you order through this page

> https://nutraeasy.com/pursuit/order_pursuit_intl.html we can get you an

> estimate on shipping. We don't mark the shipping or the cost of the product

> up -but even USPS rates are probably going to be at least around 40 US

> dollars to ship (and then there are sometimes customs) Of course the reason

> people are buying it international and paying so much for shipping is only

> because it's working -and Bill Farley has promised us that he's planning on

> this company shipping direct worldwide within 5 years- and I'd think UK

> would be one of the first to be on the list!

>

> By the way -LOVE the name Caleb!! Again welcome!!

>

> =====

>

[Guest guest]

-

 

I was diagnosed with RA a couple months ago myself. What I can tell you is that

when I broke my back and didn't walk for 11 1/2 months, I thought my life was

over. When I was diagnosed with Fibromyalgia and the pain and memory loss stuff

kicked in good- I thought my life was over. When I had pre-cancerous cells and

had to have a hysterectomy, they screwed up some stuff- and I thought my life

was over. Then I was diagnosed with Diabetes and high blood pressure and I

wished my life was over. Then my heart started acting up with Angina and I KNEW

my life was over. Now I have RA on top of the Osteoarthritis. I have finally

learned that my life ISN'T over and won't be until I die.

 

I have a farm with many critters that require care 365 days a year and farming

in general is not the easiest life there is. I get through each day grateful

that I can. I do require some help. I understand how devasting the RA diagnosis

is- it was for me too. All of us in this group as well I suspect- BUT- the fact

is that your life is not over. You can take as much control of any physical

issue as is possible and learn how to cope. Life becomes different, but it

doesn't end. Maybe you can hear that now, maybe not. You may be too hurt & angry

to hear it yet- but it makes it no less true.

 

 Empower yourself by doing what you are doing here- learning, talking & growing

with and through it. Finding positive support. Insist on good health care

providers that you can talk to and trust. Hop on Web MD and sign up for the

newsletter to get the latest info. ( owner  of group ) researches and

provides excellent articles for us to learn from. Know your enemy. This disease

is my enemy and I'll be danged if it's gonna win. Also try Rise network and they

have monthly webinars that you can also acces via phone. The next one is Nov 1st

and they will have a panel of Rheumatologists and other pros to ask questions

of. There is tons more resources to learn from in this day & age that my mother

didn't have.

 

If you need to be on disability- then do not let the time elapse- get an SSID

lawyer and don't stop until you get the needed asssistance. EVERYBODY I know has

been denied multiply. Get the lawyer & go forward. You may or may not be able to

be trained for a different type of work with state & federal assistance.

 

I will not just lay in a bed every day of my life. I will have some days that I

can do nothing else but that, but I won't lose it all. On the bad days, I reach

out to this group and my personal support people. We are all of us in this

together.

 

           Gentle hugs---  in SC

 

I am mad, angry, frustrated, heart-broken, devistated, and my spirit is broken.

This new path in my life is hard to get used to because I have people telling

me-

[Guest guest]

Hello I am 32 and suffer with BPES. I am new to groups generally and not sure

how it all works?

[Guest guest]

Chris:

You have a fabulous outlook, I admire your spirit. They'll never take me alive

either - L0L:))

OKD

[Guest guest]

Hello ,

Welcome in this group. The way it works is quite simple. Being an

international group with members all over the world and a lot of experience

with BPES you can address all your questions to the group and without doubt

someone will answer. So please feel free to raise your questions here.

Best regards,

Dolph Heideman - The Netherlands

blepharophimosis new to the group

> Hello I am 32 and suffer with BPES. I am new to groups generally and not

> sure how it all works?

>

>

>

> ------------------------------------

>

>

[Guest guest]

--- In blepharophimosis , " jenny.sutton35 " <jenny.sutton35@...>

wrote:

>

> Hello I am 32 and suffer with BPES. I am new to groups generally and not sure

how it all works?

>

hello i just joined to day. do you have bpes?

[Guest guest]

Hi Curtis

Recently you posted

hello i just joined to day.

do you have bpes?

This is a group for people who have Blepharophimosis. There are

about 800 members from around the world. Most of the people have BPES Syndrome.

Some have other syndromes which Blepharophimosis is one of many problems that

they have.

When you post, please can you introduce yourself, perhaps

saying where you are from, and whether or not you have BPES.

Just in case my reply to you doesn’t answer your

question, please do feel free to ask more.

Thanks

Shireen

London, England

From: blepharophimosis

[mailto:blepharophimosis ] On Behalf Of curtiscrystal91

Sent: 05 November 2010 00:58

blepharophimosis

Subject: blepharophimosis Re: new to the group

>

> Hello I am 32 and suffer with BPES. I am new to groups generally and not

sure how it all works?

>

hello i just joined to day. do you have bpes?

[Guest guest]

Hi Dawn and welcome! I remember when I was new here, you will learn so much

from this group. I recommend as well you read the later talking book that the

owner of this group wrote with her son's doctor. My son wasn't saying as many

words as your son at that age. Are the words clear? Kate

>

> Hi, I'm Dawn. My 27-mo old son has been in the Birth to Three program for

just over six months for a speech delay.

>

> At 19 mos I had taken him for a well-baby visit, and his pediatrician asked

about his talking. At that time he only had " da-da " and " ooo " and other babble

sounds. He had only had two ear infections - one at 3 mos old and a double at

11 mos old. His hearing seemed fine. His other developmental milestones were

right within guidelines, so I didn't begin to think that something was wrong.

The pediatrician said that if he didn't have two-word sentences by the time his

two-year well-baby visit, that we would have to develop a plan for therapy.

>

> I got home from his visit and called Birth to Three and he was enrolled in the

program shortly after with a speech delay and a slight fine-motor delay.

>

> At first he progressed slowly, maybe one word per week and even less signing

than that. In December I asked his therapist if there was something else I

could do to help him, and she recommended a pediatric neurologist. Our

appointment was at the beginning of February.

>

> After I made the appt with the neuro, in January, he had a little explosion of

words, taking his word/approximation count from about a dozen to 30-35.

>

> We still kept the appt with the neuro at the beginning of February, who

believes that he has verbal and motor apraxia. She was reluctant to give the

actual diagnosis until she had more to go on. While he was cooperative at the

beginning of the appointment, when he and the doc were playing together, his

mood changed when she took out her stethoscope and he began to cry and tantrum.

She asked us to make a follow-up appt for the end of March, increase his Birth

to Three visits to two per week, and to video him with his therapists and other

activities (he goes to a Music Together class and a toddler gymnastics class

weekly). We only have a few more things to video of him before we send her the

DVD.

>

> The neuro also asked that we get an audiology evaluation done. We had that

last week, and while he resisted the actual ear exams, we were told that his

hearing is within normal limits when using both ears together.

>

> This is all new to me. I ask the therapists every week what I can do to help

him, and they give me great ideas, but I'm hoping to connect with people who

have children in similar situations.

>

> Dawn

>