Re: Waiting patiently for the surge

[Guest guest]

Hi, Donna

My name is Kathy, and my daughter is five years old. I am in that 1% group

with you. So I cannot wait to hear some answers back. Kayla is also on the

EFA but only one a day, she is on the Carnosine twice a day, but she also has

a vitamin compound for her that has the vit E and Zinc level in it that she

needs. Kayla has only been on the EFA and Carnocine for about nine weeks.

Kayla is not saying any words, she too understands when you talk to her.

Kathy

[Guest guest]

I believe the group that EFAs don't " work " for is more than 1%

and less than 10% of the children based on what we hear.

Interesting to note -we've had a dramatic rise in children with

speech disorders in the last 10 years - " 30 fold " (!!) according the

2001 Department of Education stats. According to Dr. Mark Geier via

email " my analysis of this data showed that there was a 30-fold

increase in speech disorders in children born in the mid-1980s to

the mid-1990s. This means that the numbers were 30 times higher in

children born in the mid-1990s than the mid-1980s (i.e. the actual

numbers were approximately 2 per 1,000 children born in the mid-

1980s to approximately 60 per 1,000 children born in the mid-1990 "

So in the 80's 2 out of 1000 speech disordered children were the norm (and maybe

the ones that would not have

responded) and the 90's it rose to 60 out of 1000. Why the extra 58 children?

And don't assume " more " awareness (that's a joke!), based on what I just wrote

here -those numbers should probably be

higher.

http://www.cherab.org/information/adhd-speech.html

From now on, please put what state you are from when you find the

EFAs not working. I've noticed many more members from certain

areas -and I wonder if environmental factors such as toxins are in

play. Maybe apraxia " used " to be rare which is why nobody knows

about it -and here it is at possible epidemic proportions -rising so

fast and still no awareness. As Dr. Geier told me -speech disorders

have risen far higher than autism -any articles on that? (except for Dr.

Geier's which was really for autism -and the rise in speech disorders was a

shocking discovery)

But back to the percentage theory (that some children would have had

a " rare " speech disorder in the past as a norm -and the children in

this small group did not " get " apraxia the same way as the other 58?)

Anecdotally time

doesn't make a difference -and in most cases dosage doesn't either.

If it works -it works with the " right " omega 3/6 formula at even a

very low dosage for some reason, even if it works better at a higher

dosage. (for those of us that have kids that it works for -they'll

know what I mean) and changes are noted in a day to three weeks in almost all

cases but a handful.

I'm not saying that it's hopeless and that the oil therapy will

never help those in that small group (never say never) - You can try what others

have tried. Some have tried

changing formula's, (rent Lorenzo's Oil) and I would try not doing

everything at once (both fish oil and carnosine) I'm happy that

both were not available to me to start -I would have done both at

the same time too. However we don't know how one plays with the

other -and we know that one could counteract the other. You also

want to make sure that your child's diet is not big time saturated

fats -that will compromise the positive effects. Worst is french

fries and doughnuts. Try stopping the fried foods for 3 weeks -and

see if there is a change. If your child doesn't eat fast food or

fried foods lots -then that's not it either.

Here is a plan:

Keep a notebook and stop one for a few months. Then stop the

other. Any regressions with either? Then put your child back on

just the Omega 3/6 oil -notes again, any changes? Stop that and

then start the carnosine, any changes?

As we all know now most of the children respond to an Omega 3/ 6

formula similar to

100 DHA

150 -250 EPA

30-50 GLA

As far as starting on the high dosage as Efalex recommends -again

most of us don't have to do that either to see the surge in a day to

three weeks. Also the PhDs say it can take " up to 3 months " if you

want to go by what has been stated about it. Keep in mind that most

people only post if they see great results -or no results. I

recommend finding (or starting) a support group near you where you

can compare notes and talk to others parents -get your children

together etc. This way you will get to talk to those with mild

results too -going from nonverbal to more babble and eye contact -

etc.

If you see any signs in the following archived post let me know.

Rothweiler's son took the longest that I know of to see the

surge -5 weeks, but one other posted it took longer. Most of us see

it in a day to three weeks -or in a handful it doesn't appear to

work no matter how long you give it.

" From what most of us have seen and reported here -the changes on

EFAs again will be typically first be seen from one day to three

weeks (give or take) even though most of the PhD's say up to 3

months to notice the change. Within that time you will just like

you reported hear spontaneous speech -the first word, " break

through " more focus, eye contact and attempts etc. There probably

was an increase in babbling or facial movements before that you may

not have noticed. Again in my experience -in 3 to 5 months most of

the nonverbal children are attempting 2 to 3 word sentences. Each

word alone may be clear -but when put into the sentence -at first

they may break down a bit again -however with a model they can

typically get it right! Tanner's first sentence without a

model? " Ah Of Oooh " (I love you!) You can hear Tanner and other

apraxic children from our group at http://www.debtsmart.com/talk "

" Most of us actually did have nonverbal apraxic or PDD children

prior to EFAs -even though some in this group did not have any

diagnosis other than " delay in speech " . I can tell

you what we have seen as a group, and you can also search the

archives and web for more. Many of those posting here now other than

a few are newer parents as I explain below...

I remember when Tanner first started on Efalex, which is the formula

most of us found to be the best before ProEFA was invented, that I

posted to a list one week later that Tanner was going into corners

and whispering sounds to himself. Just like you I asked if this is

normal activity for an apraxic child because I thought it was kind

of strange. I don't remember if anyone answered, however I do know

that

one week after that -so two weeks after starting the Efalex- is when

Tanner said " lellow " for the first time. I posted that it was like

Bambi when he learned to say " flower " and instead of saying flower -

Tanner walked around looking for things to call " lellow " -he was

just as excited as us to be talking!! What's most amazing about this

is that prior to supplementation Tanner was in therapy 2 to 3 times

a

week one on one for half hour to 45 minute sessions for about 5

months and had learned in that time to blow bubbles, make more

facial

movements, say simple sounds like " ch " or " ooo " with lots of

encouragement and animation -however he still was not able to take

the " ch " and the " ooo " and put them together to say " choo " His only

words essentially at 2 years 10 months prior to EFAs were " mmmm "

and " ma " -and this was with lots of therapy. Just two weeks later

was a world of difference.

I don't know exactly why your child is moving her mouth in unusual

positions, or groping -however to me any changes outside the norm

when you start your child on the EFAs is a great sign that something

is clicking and

that the surge may be soon approaching. (Please let us know when you

see the surge in speech in the next week or two!)

Since I receive lots of calls about this -I wanted to list the most

common changes in an apraxic or other speech disordered child on

EFAs

from what I've read and heard and seen.

1. Increase in babbling or attempts at sounds.

2. Increase in imitation.

Changes also can be looked for in (what you see as positive or

negative)

sleep

attention

appetite

focus

behavior

stools

Next will come a breakthrough of something you were probably working

on for a bit -so you will be excited but will think " Well -I don't

want to get my hopes up we were working on that for awhile now -

maybe

it's just a coincidence " However after the second or third surge in

a short period of time -and then another - you are pretty sure

things

are different and it's at this point the professionals and the rest

of the family and your friends are noticing it too -maybe about two

to three weeks now.

OK -the next stage is pure elation and hope -you see the light and

no

longer feel as desperate and want to share this new information with

everyone and anyone. As the months go by and your child continues to

progress at a much more rapid rate -you may even start to doubt the

original diagnosis -especially if you started EFA supplementation at

two -and perhaps the SLP that diagnosed the apraxia who also was at

first excited is starting to second guess if the original diagnosis

was correct as well. Unless you have to stop the ProEFA (or other

Essential Fatty Acid) and literally have the chance to see the

regression of acquired speech and language skills, attempts, and

changes in behavior like we did with Tanner (and/or have a chance to

again witness the second surge when your child is put back on the

EFAs) -that doubt will probably remain somewhere in your mind and in

others around your child. So the " I told you that he would start

talking when he was ready " comments should be expected of course.

Up to this point is understandable to me -it's the point after this

that is confusing to me, and perhaps not the best stage for our

children and for raising awareness or having research done to find

out what is happening to our children and why. Perhaps because we

have truly hit a paradigm shift...

As Dr. Agin states the EFAs actually appear to be in some

ways " curing " the apraxic child -even those diagnosed with severe

oral and verbal apraxia, hypotonia, sensory and behavioral issues.

Especially those started at younger ages.

The child on ProEFA or some other EFA formula's like it no longer

fits the criteria of the classic definition of apraxia -and yet

doesn't fit the classic perception of what a late talker is either...

Some of the parents become more focused on other everyday activities

with their child and start to drift away from the support sources

(for those who ask why there appears to be trouble with support

groups in the US and outside the US now a days) I found it amazing

that at the New Jersey Speech Hearing Association Conference that a

higher than average number of the parents that attended had children

that did not respond to ProEFA. Basically only parents that were

still desperate for help for their child, or new parents showed up.

Problem with this attitude is that unless your child is really up to

speed on all aspects of speech and language, the support sources

that

helped in the beginning will still benefit your child today. ProEFA

alone is not the only answer and until we know how and why it works

(or why in a handful of children it doesn't) we can't improve on it "

=====

[Guest guest]

Hi Donna,

I don't have any advice for you but I will be reading the responses as your son

sounds so much like mine. is 37 mo now and has been in speech therapy

for about 14 months with a couple of gaps for a new baby and a move.

Interestingly, until he was about 2, his primary sound was ma. Well, actually

mamamama. He too used it for everything. He later lost that sound and was

quiet for several months. I can't remember the exact ages on any of this. Then

he began saying da and using that for everything. We started ProEFA at 28 mo

and thought it helped a bit but a month later thought we had been too hopeful

and stopped it. Then maybe a month after that, figured I might as well use up

what I had and restarted it. That time I definitely noticed an improvement, but

I must say it has remained pretty small. He definitely started making more

noise, trying to talk more, more word starts. He did say a word--Bob--though

actually bababa--in the first week after restarting, and now has maybe 15-20

word approximations, but they all have to start with b,d,m, or n. Those are the

only consonants he can use reliably. He also has very limited vowels. He still

can't say O like in open. He hasn't been officially diagnosed with apraxia but

from my reading, he fits the diagnosis of global developmental dyspraxia, also

has mild hypotonia and some sensory integration issues though I still can't

decide if I believe in that or not. We started Carnaware last month but stopped

after 3 weeks with no noticeable improvement. Now I am thinking of increasing

to 2 ProEFA's a day which I have not yet tried. I guess I will try EPA after

that.

Anyway, I wish you the best and hope you get some results. Please let me know

if you do, they really do sound a lot alike. B also walked at 23 mo, BTW.

Liza

[ ] Waiting Patiently for the " Surge "

Hi All,

I absolutely love this group and try so hard to read everything. I

am embarrassed to admit however that I am still reading digests from

mid February! Lately I have been feeling hopeless and wanted to turn

to you more experienced friends for a shoulder to cry on.

My son's name is Liam, he is almost 2 1/2 yrs old. He is speech

delayed, has hypotonia (did not walk until 23 mos) and has some mild

sensory issues. He was diagnosed with verbal apraxia at the end of

January. We suspected apraxia was the case before he turned 2 and I

did all the research and found the CHERAB website and read all the

wonderful things about EFA's. I was able to get ProEFA (hard to get

in Canada) and started him on it the day he turned 2 (Happy Birthday

Liam!). He stayed on one capsule a day for 3 months then I upped it

to 2 capsules a day and he has been on two a day for almost another 3

months (EFA's for almost 6 months total now). After going back into

the archives tonight I am finally realising that he is in the small

percentage of children who is not having language " surges " from

EFA's. He has been in speech therapy once a week for almost 6 months

now and still does not say one word. His brain is wired to go

to " Ma " for everything.... " ma, ma, ma, ma " and the occasional " da " .

It took six months of speech therapy to get him to say " ooooo " as

in " open " , " ba " as in " ball " and " ah " as in " up " . He could already

say " ma " and " da " before he started speech but now uses those

approximations for " more " and " down " . We just hired a

private " PROMPT " trained therapist and Liam has had one official

session with her, she will come once a week and we will continue

speech once a week at Children's Hosp as well. He will not

automatically use the approximations he knows, he always goes to " ma "

first, then with a lot of visual or verbal queuing from me, Liam will

say the approximation. We took a Baby Sign Language class and he

signs over 50 words. His receptive language seems good, and my

husband and I sometimes spell things to each other when we don't want

him to know what we are saying.

Here's my questions - Am I doing the right things? I am NOT giving

up on the EFA's! I do believe they are beneficial for him eventhough

I am not seeing the surges that 99% of others see. So we will

continue with 2 ProEFA per day. I have recently purchased ProEPA and

also Carnosine and wonder what you recommend I try next. The

Carnosine is in capsules 500mg, it is available right here in my city

(awe and amazement). http://www.aor.ca/ They actually have

a " Breaking News " page that has an article on Carnosine and Autism

that references the work done by Dr. Chez. My only concern is that

this Carnosine does not contain the added Vitamin E and Zinc that is

in the Carn-Aware product. I have read that Vit E and Zinc are added

as " carriers " to get the carnosine to work most effectively. Should

I just give Liam extra Vit E and Zinc on my own or not worry about

it? Also concerning the EFA's, if I have not seen much improvement

with ProEFA, do you think that adding the ProEPA will finally get us

seeing the language surges that we are praying for?

Any comments would be greatly appreciated! By the way, I just

ordered " The Late Talker " Book from Amazon.ca. Thanks so much again

for this fantastic group!

Donna

[Guest guest]

Donna,

My son is almost 4 years. He was completely nonverbal at 2 1/2 years. He

started actually using words or approximations around age 3 but it was like ah

and eh in different intonations to mean different things, then da da, ba ba

etc... All of this was very slow going. I started him on ProEFA about age 2.5

years, my son has hypotonia, global apraxia, DSI. We saw immediately a change

in fine motor issues, not huge but he was more willing to try new things. He is

still very delayed fine motor (age 21-23months) but still we saw an improvement.

He started with actual words (deleting numerous final and beginning consonants)

around 5 months ago. We added EPA about 6 weeks ago. He is now up to 50 plus

words and can say just about anything with prompting. He is beginning to put

two words together and occasionally even three, for example ball go up. He

signs but is now using words much more than sign. I do not what has made the

change but at present we are on one ProEFA and one EPA a day. He said school

house yesterday. I know how hard it is when nothing is coming out but just

wanted you to hear our story. The words were not our first change when we added

ProEFA but I wouldn't stop it now because I am not sure what has helped the

most. The intensive therapies, the EFA's or EPA, age. We are just going to

keep doing it all.

Good luck

Daphne

[Guest guest]

I forgot there are many new parents in this group so just one more

point for anyone that's keeping track.

In the CHERAB parent and professional anecdotal feedback, the

children (except one due to summer break) who had the surges on the

right formula of Omega 3 and Omega 6 were receiving " appropriate and

intensive therapy, one on one, two to five times a week with an

average of three for at least 6 months (or years of therapy with older

children) with little, slow, to no progress

before EFA supplementation " (Which was part of the description of apraxia

before EFAs).

In the CHERAB parent and professional anecdotal feedback, the

children (except one due to summer break) who had no change on the

right formula of Omega 3 and Omega 6 were receiving " appropriate and

intensive therapy, one on one, two to five times a week with an

average of three for at least 6 months with little to no progress. "

Therapy should not be a variable- either way the child should be

receiving " appropriate and intensive therapy, one on one, two to

five times a week with an average of three " when nonverbal.

The oils appear to enhance and accelerate the therapy -however they

should not be used alone. Only a handful report a surge during a

time there was no therapy -summer etc. As ph Hibbeln, M.D.,

Chief, Outpatient Clinic National Institute of Alcoholism and

Alcohol Abuse, NIH, Bethesda, land lectured about at the First

Apraxia Conference http://www.cherab.org/news/scientific.htm " the

brain responds to multiple stimuli " So speech and occupational

therapies together with supplementation will be better than one

alone.

I my opinion -once a week ST for a child who is nonverbal and

diagnosed apraxic is not enough therapy with or without the magic

fish oil. Therapy and (the right) fish oil belong together, just

like PB & J. (except maybe not as easy to get our kids to eat)

=====

[Guest guest]

Donna,

My son Connor is 3 1/2. He spoke his first word April 22, 2002.

Almost a year since his first word.

He now speaks hundreds of words. He can sometimes speak in 4 word

sentences!!! He is making real progress.

But before his first word at 2 1/2, all he said was " muh "

or " mamamama. "

We didn't start ST until he was 2 and 10 months and he was already

saying 100 words. We didn't start signing until age 3.

You are ahead of the game!!!! I honestly don't know how much would

ST have helped Connor before he started talking? Maybe it would have

been the slow struggle it is for you right now. Maybe it will get

easier and start to take off.

It sounds like you are doing all the right things. Keep learning

sign. I know it is hard but it is so helpful. Connor says hundreds

of words but I don't understand many of them so when he signs it is

SO NICE to know what he's saying rather than having to guess and

check with him. The other day when he said Austin wet pants. At

least that is what I think he said. But I asked his preschool

teacher if AUstin had wet his pants or spilled juice on his pants?

No. So maybe he was saying red pants? Who knows. I know the

sign for wet and for red, but Connor doesn't yet. If he could sign

more, I would understand more of his words.

So, my advice, keep going. You are doing the right things.

[Guest guest]

on 4/9/03 9:53 PM, at

wrote:

> My son's name is Liam, he is almost 2 1/2 yrs old. He is speech

> delayed, has hypotonia (did not walk until 23 mos) and has some mild

> sensory issues. He was diagnosed with verbal apraxia at the end of

> January.

(snip info on PROMPT, PROEFA and other treatments)

> Here's my questions - Am I doing the right things? I am NOT giving

> up on the EFA's! I do believe they are beneficial for him eventhough

> I am not seeing the surges that 99% of others see.

Hi! The things you are doing sound really good. You might also want to add

some sensory integration work (done by an occupational therapist trained in

sensory integration). Kids love this (it's lots of play), and apraxic kids

typically respond very well to it. Which makes sense because, from an OT/SI

perspective, apraxia *is* sensory integration disorder.

Our speech therapist used to send my daughter (verbal and motor apraxia) to

OT for a few minutes before therapy, and it seemed to make a huge

difference. Just spinning her around on a swing, you could see her eyes

light up, as she became " engaged. " Sort of like waking up a computer after

it's been asleep. We also see an OT at a sensory integration clinic, and

Panda has a blast building obstacle courses, riding trolleys (that you hang

from by your hands) and then dropping from the air into a ball pit, swinging

on a variety of swings. (Note: don't worry if these activities sound

" wrong " for your child; the OT develops a plan for each child based on what

they need. These are just the ones we do with Panda.)

You might want to check your library or bookstore for two books: The

Out-of-Sync Child and The Out-of-Sync Child Has Fun (both by Carol

Kranowitz). These are very easy to understand and fascinating to read.

(Chances are, you will recognize your child in those pages.) The original

OSC provides detailed information on sensory integration disorder (DSI),

what it " looks " like, heartbreaking perspectives on how children with DSI

experience life (likely to inspire instant compassion in their parents and

teachers), and talks about success stories as well. The new book ( " The OSC

has fun " ) gives lots of practical ideas for at-home or in-school treatments

that help with particular types of needs. Of course, " sensory integration

treatment " simply seems like play for the kids; it's interesting to see why

certain kids are attracted to particular kinds of activities (because of

certain neurological needs). The books' web site:

http://www.out-of-sync-child.com/

Take care.

Diane, mom to Pandora (6, verbal and motor apraxia, ADD, DSI)

and Emerson (2, speech and motor delay)

West Hartford, CT

[Guest guest]

donna

your son sounds like my son. my son had 2 words " da-da and ba-ba " in

december. he is low tone also and very very flexible due to the low tone.

tall for his age alot of people think he's 5 instead of 3 and expect alot

more from him. he also has sensory problems, short sleeves for the spring is

our next battle. he has been on pro-efa for 6 months now and had 2 big

surges, one the end of december and one in the end of march. whether it was

the fish oil, my home drilling of flashcards, the wonderful school he is at,

gluten and dairy free diet since jan or the vitamins prescribed by a DAN

doctor who is an allergist/immunoligist, i don't know which of them brought

about the change. maybe it was just his time to talk, i don't know. but i

was in the same place you are at 1 year ago. very frustrated, don't have a

clue what i could do to help. you feel helpless because you can't help your

child talk. please hang in there. my son now speaks 100 + words and told me

yesterday, " i have poo-poo " , and " i want school " . it made me want to cry.

this is a child who has hydrocephalus (extra fluid on the brain) and has had

2 brain surgeries and a shunt. i have been told the following..his

hydrocephalus has nothing to do with the late talking, his hydrocephalus has

everything to do with his late talking, he has left hand dominance, his motor

planning is off, possible pdd, possible autistic, possible mental

retardation, possible genetic problems, possible auditory processing problem,

receptive and expressive language delay, speech delay and several other

possible problems. well...he's lefty, so that's why he used his left hand

more, he knows his letters,abc's, shapes and colors and taught himself the

lower case of the alphabet, so i don't think he's mr. no genetic problems,

had blood tested. sure he has other problems but all of these so called

probable diagnoses came from respected and recommended doctors( none from

this website though) no one doctor had ever said what he has. i think they

are afraid to double diagnose with the hydrocehalus too. he does show

pdd-like symptoms but seems to gradually outgrow the lining-up and responds

to his name now ,but this is at 3 1/2. i have given up on diagnosing him and

treat the problems, speech, sensory, socialization and physical. he

qualifies for preschool with his original hydrocephalus diagnoses.

i don't know if i've helped you, but it has helped me to share my story. my

advise is go with your gut, research,and get enrolled in a good preschool

where your son will learn routines and will be able to socialize with other

children. hopefully your son will start talking like mine did. it was all

of a sudden and once the first words came out, it seemed the floodgates of

language opened up for him. don't get me wrong...i still have many years of

speech, physical and occupational therapy ahead of me but i am extremely

optimistic for his future.

all the best

lori