Re: having a rough day... need some support

[Guest guest]

YES!  There was a day or so of behavior that " wasn't our daughter " .  It goes

away, I promise.  I read somewhere that the " synapses are starting to fire " and

that is the reason for the behavior? 

Hang in there....

in OH

 ¸...¸ __/ /\____ ____

,·´º o`·,/__/ _/\_ //____/\

```)¨(´´´ | | | | | | | || |l±±±± |

¸,.-·²°´ ¸,.-·~·~·-.,¸ `°²·-. :º°

As for me and my house, we will serve the Lord! 24:15

Come and relax at Abberley House Irish BnB

http://www.abberleyhousebnb.com

 

 

________________________________

From: Creager <lisad529@...>

Sent: Friday, April 3, 2009 11:51:20 AM

Subject: [ ] having a rough day... need some support

My 2.5 year old has hypotonia (trunk and up through facial muscles) and verbal

apraxia with some relatively minor sensory integration issues. Now, within the

last month, we have added foot orthotics to the mix for pronation and toe

running and he now needs eye glasses for farsightedness and astigmatism. .. poor

little guy... so much going on for such a little guy.

Then... I just realized that I have been giving him the WRONG Nordic Naturals

product... wasn't giving him the PRO EFA... just the Children's strawberry

flavored Omega 3 oil... DUH! I just ordered the right stuff today. (and we just

increased his dosage to two teaspoons a day after getting his labwork back

stating we could increase and his behavior has gotten a little bit naughty...

we're in the IGNORE MOMMY and do the opposite thing stage... lots of time out

going on now. Anyone have this problem with increased dosage of omegas?

HEAVY SIGH... need some support today.

[Guest guest]

Hi, I read that too .. but my son is starting to BEHAVE!!! so what does that

mean? lol .... also you mention labwork to see if he could get a higher does of

omega ... what lab work would that be? Thanks!

________________________________

From: G <whitmore_dh@...>

Sent: Friday, April 3, 2009 2:15:11 PM

Subject: Re: [ ] having a rough day... need some support

YES! There was a day or so of behavior that " wasn't our daughter " . It goes

away, I promise. I read somewhere that the " synapses are starting to fire " and

that is the reason for the behavior?

Hang in there....

in OH

¸...¸ __/ /\____ ____

,·´º o`·,/__/ _/\_ //____/\

```)¨(´´´ | | | | | | | || |l±±±± |

¸,.-·²°´ ¸,.-·~·~·-.,¸ `°²·-. :º°

As for me and my house, we will serve the Lord! 24:15

Come and relax at Abberley House Irish BnB

http://www.abberley housebnb. com

____________ _________ _________ __

From: Creager <lisad529 (DOT) com>

@groups. com

Sent: Friday, April 3, 2009 11:51:20 AM

Subject: [childrensapraxiane t] having a rough day... need some support

My 2.5 year old has hypotonia (trunk and up through facial muscles) and verbal

apraxia with some relatively minor sensory integration issues. Now, within the

last month, we have added foot orthotics to the mix for pronation and toe

running and he now needs eye glasses for farsightedness and astigmatism. .. poor

little guy... so much going on for such a little guy.

Then... I just realized that I have been giving him the WRONG Nordic Naturals

product... wasn't giving him the PRO EFA... just the Children's strawberry

flavored Omega 3 oil... DUH! I just ordered the right stuff today. (and we just

increased his dosage to two teaspoons a day after getting his labwork back

stating we could increase and his behavior has gotten a little bit naughty...

we're in the IGNORE MOMMY and do the opposite thing stage... lots of time out

going on now. Anyone have this problem with increased dosage of omegas?

HEAVY SIGH... need some support today.

[Guest guest]

would know! Anyone who's been in this group for any period of time

knows that what we view as " bad " signs when starting the right formula of EFAs

end of being good signs (important -this is jut for fish oil formulas alone -not

anything about fish oil formulas mixed with high levels of vitamin E and K)

Re: fish oil and behavior

-sorry for the long archive below -but this topic is very old and so many

have gone through it with success. You don't have to do anything -give anything

since in most cases it only lasts a few days to a week (outside of Marina's

child and perhaps one other in this group?) Just remember -terrible twos are

normal -perhaps the children are doing something they should...I know from this

group of thousands most with apraxia go through it a bit later than 2.

Re: side effects of ProEFA...

Lori -Congratulations! Over the years I've learned the only real " bad " side

effect of fish oils outside of allergy of course -is no change, good or bad, at

all. The fact you notice something - anything -that's a good thing. After all if

the oils didn't " work " you wouldn't notice a thing -good or bad. And why stop

the oils anyway? Who knows what would have happened if instead of stopping the

formula was changed? More EPA - remove GLA, raise GLA? Or what about change in

dosage or time of day of giving the oils? Also -does the same reaction occur

when the child has a tuna fish sandwich? Perhaps it's something in the formula

outside of the fish oil? We should notice and dig to find the truth -because for

most -fish oils have literally given us back the child we knew to be there

before. I wish so much I had the information most of you have today -and you

have the credibility and MDs to back up your decision to supplement. Back when I

started Tanner in 1999, I had to follow my gut and my own " research " since there

was nothing for apraxia or even autism.

We learn more each day, and each of us learn the most about our own

child/children. So for those of us that have been here for years we learn the

questions don't change -but the answers may. What we assume as fact today may be

fallacy tomorrow -and what we consider bad today may be known to be the signs

that neurons that were previously dormant are starting to fire...or possibly not

just a good sign -but a great one! I could take an educated guess that just 2

capsules is enough for your older child to start having some reaction -but is

probably too conservative a dosage. Two capsules

is a dosage many give their two year olds.

I suggest you find a medical doctor (neurological) who is knowledgeable about

the benefits of omegas for treatment of apraxia and similar impairments. (boy

does it feel good to almost finally be able to say that after what -almost a

decade!)

You can archive this topic since it came up a handful of times ( " bad " side

effects the first few days/week are pretty far from the norm)

Wed Jun 14, 2006 6:40 pm

" kiddietalk " <kiddietalk@...>

Re: Negative reaction to proefa

I do think I found the trick to searching and even think I found the

other few parents that posted about negative behavior on EFAs...

from those that stopped as well as those that didn't. I don't think

anything here has a chance to be swept under the rug since this

grouplist has a mind of it's own -we all decide what we want to talk

about most. Like Actos was swept (ignored by most) and autism vs.

apraxia is right now the hot topic once again. But...I do believe

that some here do see signs that may be perceived as negative to

start that end up going away or being viewed as positive later- on on

EFAs or not. Actually in reading over the archives it appears

Tanner did develop some behaviors some would view as negative -but I

welcomed it as you'll read below. Then there are others like Kim

who found it best to ignore those " bad " times.

From: " frank sabel " <sawyera@...>

Date: Tue May 4, 2004 1:57 pm

Subject: Re: [ ] Poor reaction to Omega-3 EFA's?

Dave,

When I first started Nordic Naturals Pro-EFA (one soft gel per day) for my then

two year old, his behavior became so bad I almost stopped as well. I was advised

by other parents who'd " been there, done that " to hang in there and it would get

better. For us, the first 3-4 weeks were awful but by weeks 6-8 his behavior

settled back to what it was b/4 starting Pro- EFA. I have read on other boards

that adding extra Magnesium helps with increased hyperactivity that sometimes

accompanies the introduction of essential fatty acids. I never tried that b/c by

the time I read that we were past that phase.

Good luck!

KIM

and

From: " Morin Family " <morinfamily4@...>

Date: Wed Mar 31, 2004 7:41 am

Subject: RE: [ ] Re: ProEFA/bad behavior

,

When we started our son on ProEFA and when we increased his dosage, he went

through a time of worse behavior. I have heard time and time again of

children experiencing bad behavior prior to a surge, whether on ProEFA or not.

We waited out the crumby behavior (which subsided) and the results

afterward were miraculous! My advice is to give it more time as your son's body

adjusts to the ProEFA.

I have to admit though, we are waiting until summer to make another increase

because of potential bad behavior.

Just my two cents...

Tricia

Below are some archives. Suzi, , Laurel, Dave, and Gisele (and anyone else

out of the thousands we just didn't hear from) can perhaps update us.

Re: Hitting, EFAs, and adding extra Omega-3/Jane

" bad behavior prior to a developmental surge "

I so agree with you Tricia, and I again am so looking forward to meeting you and

your wonderful family when you vacation in Florida! And I agree with you Jane

too. This could just be frustrations of not being able to communicate, or normal

terrible twos behavior.

You guys are lucky your children are going through this stage at a normal age in

my opinion. We didn't know about EFAs when Tanner was two. Tanner didn't go

through terrible twos -after he regressed at 11 months old he didn't go through

much of anything even though he passed all developmental milestones according to

his pediatricians at the time. Yes he had many quirks from his sensory

integration dysfunction and would occasionally have a melt down, but we learned

many tricks on how to avoid them, and for the most part Tanner did whatever we

wanted him to do with no reaction. The best way to describe it was that it was

like he lost his personality. My son Tanner was so lethargic and compliant when

he was nonverbal prior to

EFAs. Maybe I'm weird but I never viewed that as normal...or " good " The artist

in me wanted self expression. For two years Tanner had no life in his eyes -and

I can show you videos of what I meant. He was like a shell from one to two years

old. He was not autistic because he responded to one on one attempts to

communicate -he just couldn't talk, and would tire easily and didn't seem to

have any energy. The minute Tanner was offered nonverbal

ways to communicate he responded with enthusiasm and willingness - but he was

still lethargic.

I welcomed big time when Tanner went through terrible threes after we started

him on Efalex back in 1999 and he first started to become Tanner again - every

terrible (normal) moment that Tanner said " No! " and demanded it had to be his

way and not our way. We respected his demands without spoiling him. We welcomed

when he started to " run around " in the restaurant or store (like his brother who

he finally could keep up with) while we also taught appropriate places to run

around instead.

Tanner for years now is known as the " sweetest kid " by the teachers, other kids.

He has a great sense of humor. He is the one who goes out of his way to comfort

anyone that is hurt. He has a high receptive language ability and has no trouble

understanding more complex thoughts and feelings...even though he can't always

express them in a sophisticated way. Tanner takes ProEFA and ProEPA every day

and regresses when he is off for one day still. He takes carn aware/carnosine on

an on and off basis which we find to help because he regresses when on or off

too long. Tanner can not take

high fiber as it causes a dramatic regression in him for some reason. Under the

advice of his MD, Tanner drinks pear and papaya nectar every day and also eats

the Dole papaya jell bowls and canned pears which keeps him regular after years

of constipation. And only uses the Milk of Magnesia once in awhile when

he skips a day. Tanner is just doing amazing in all areas -and yes I want to

share what worked for him because I believe in it...and not just for Tanner and

Dakota.

http://www.cherab.org/information/familiesrelate/letter.html

Suzanne Smolyar once said the worst side effect she can think of was her 5 year

old daughter being nonverbal -which she was until she started EFAs, and

is still doing great. And the good news is that for those that don't

agree -you can always stop the essential oils, or look to the gray area in the

following archives:

" In rare cases where EFAs don't work -parents don't report any changes on the

oils or off - either good or bad. So bad news (or what you view as bad news

which I'll get into below) can actually be the good news.

I'd talk it over with your child's MD and your spouse -but it's not unusual for

there to be a child that is a bit hyper right before the surge. And yes -a word

just " popping out " the other day after 4 weeks of starting is a week longer than

the one day to 3 weeks -but not that far off. If it is the EFAs kicking in -you

will keep seeing more and more.

Here is a question for you:

Your daughter before -was she " laid back " ? What we view as a " good child " is at

times a child who is not expressing normal developmental attitudes of expressing

independence. The " no " stage. As speech increases -this stage comes in more -and

most times way after the age of two. It could happen at three -four or even

older -and it's when this stage happens that other good things kick in too -

like the child becoming more independent of you. So again -this may not be the

bad sign you think it is. You want your child to go through normal stages of

development -even if they are not all " nice " Most don't like it -but accept it,

and just remember - this too shall pass.

Keep in mind the following is from a parent of a " normal " child -and she doesn't

mention whether or not she just started fish oil but I suspect not.

" My 19-month-old son has always been a good boy and has done whatever I asked

him to do. Recently he started refusing to do anything I ask of him. He has

started crying and hitting me even when I ask him to do simple things. Where

have I gone wrong? What should I be doing differently? Will he always be like

this? Redwood City, California

" The hallmark of this stage is oppositional behavior. Our wonderful children

instinctively want to do exactly the opposite of what we want. We have nice,

reasonable expectations and they say, " NO! " or they simply dissolve into tears.

Suppose you have some place to get to in a hurry. Your son has been in a great

mood all day. . . until you say, " I need you to get into the car right now. " He

will, of course, want to do anything except get into the car. As if this

weren't enough, children in this phase of development have a great deal of

difficulty making the choices they so desperately want to make. You ask your

child what he would like for dinner, and he says macaroni. You lovingly prepare

it for him, and then as soon as it's made he says, " I don't want that! " It is

perfectly normal for him to reverse a decision as soon as he has made it,

because at this stage, he even disagrees with himself. "

http://www.drgreene.com/21_556.html

Your options are the same I gave before -but here is a summary. Again talk to

your husband, your daughter's MD, and the teacher too:

Stop the oils

Keep a journal of what happens to see if behaviors you see as good or bad stop

Wait a few weeks/months

Start the oils this time, perhaps with just a 1/2 capsule or a few drops

See if good or bad behaviors come back

Slowly increase

or

Change the formula

or

Don't stop just decrease dosage

If it was up to me -I'd say hang in there. There are tons of archives on this. "

Hi all --

Short version: RUN . . . do not walk . . . to try ProEFA for yourselves!!!! I

am absolutely astounding with my son's progress. Prior to starting this product,

he was diagnosed with severe dyspraxia and never talked

unless prompted.

Long version:

Well . . . we started (4, PDD-NOS, verbal dyspraxia) on the Nordic

Naturals ProEFA capsules one week ago. He takes one gelcap per day. Here are

some random notes I made this week . . .

Day #1: he appeared to sleep a more restful sleep at night

Day #2: he appeared to be " seeing " things in a new light -- i.e. he was more

curious about things than usual, really looking stuff over (like he was on LSD

or something). Answers questions more readily when prompted than before.

Day #3: he is starting spontaneous, commenting behavior (for instance, telling

me that " it's raining " in the cartoon he was watching) totally out of the blue.

He also appears to be " following " the storyline of the

cartoons and actually understanding what's going on. Actually laughing out loud

at the cartoons when appropriate. When the commercial comes on advertising that

kid's songs video, he is actually singing short little phrases along with it --

this has NEVER happened before. Apparently he's known the words all along, just

couldn't voice them.

Day #4: spontaneous speech blitz. Commenting on everything. Expanding from his

original repetoire of 2-3 word phrases (i.e. more juice please) to 5-6 word

phrases (can I have more juice, please?) and using intonation as well. Striking

up " conversations " with his younger sister (1.5 years old), as in " Hi, Jacy,

let's play. Do you want to play? " " Come on, Mom. Need new diaper. " New

vocabulary words are being used that I think he's been " storing " in his head for

quite a while. They're coming out of nowhere -- I'm not prompting these.

I did not tell anyone I was beginning these supplements on . His private

SLP commented about what a leap in progress he's made in the past week or so.

His special ed preschool teacher, and the school SLP, also both commented about

this in our IEP meeting this week.

Teacher's comment from our communication notebook: " tons of spontaneous phrases

today -- he said, " Look, here comes Lydia " and " We are going this way " while

leading us to the playground at recess. "

SLP commented about his eagerness to work this week. Says he readily repeats

anything she prompts him to. His articulation appears to be getting clearer.

Private SLP commented that is starting to " direct " her group therapy

sessions, telling everyone where to sit, etc. Funny!

saw a parent running across the parking lot yesterday (she was running

late for pickup of her child). He shouted out clear as day, " NO RUNNING!!!! " I

cracked up! The parent stopped dead in her tracks -- up to this day she had

never heard say anything spontaneously.

Wow!!!!!!!!!!!!!

Listmates, just so you know where we are coming from here . . . I have had my

son on a strict gluten-free/casein-free diet for a little over a year now. I

keep an accurate daily report on his food intake, behavior, disposition which

helps me track down possible causes when he's having a bad day. The only thing

we've been doing differently this week is the ProEFA supplementation. There is a

direct correlation here to his

speech improvements, as far as I can tell.

My only regret is that I didn't have the $22 to shell out earlier on to start on

this regimen sooner.

I will probably write more later today, I still have a couple of questions and

comments about our earlier discussion of whether or not to cut down on

the hydrogenated oils. But I just wanted to pass along this great news.

Thanks to the listowners and CHERAB for pointing me in the right direction.

-BJ in polis, MD

> RE: [ ] Re: ProEFA/bad behavior

,

When we started our son on ProEFA and when we increased his dosage, he went

through a time of worse behavior. I have heard time and time again of children

experiencing bad behavior prior to a surge, whether on

ProEFA or not. We waited out the crumby behavior (which subsided) and the

results afterward were miraculous! My advice is to give it more time as your

son's body adjusts to the ProEFA.

I have to admit though, we are waiting until summer to make another increase

because of potential bad behavior.

Just my two cents...

Tricia

I wanted to say that I know exactly how you feel. Last night at the table,

's brother (Ari 6.8) began to speak while was trying to say

something, so she looked at Ari and said in a loud and affirmative tone " Shut up

Ari, Shut up " . We were so excited and overjoyed at her using that phrase - we

forgot to explain to her that it was inappropriate to use at the table and to

her family members. We just thought it was golden -just like you did.

Here is some background from one of my previous posts that will tell you why

this is so exciting .

" I am a mother of a beautiful 5-year-old girl, . Since the time she was

about 11 mo old - I had a feeling that something was wrong with fine motor,

gross motor and of course speech. Through the past 4 years, I have gone to

numerous neurologists, best in the field, I must add. We have gone non-stop to

therapy with , but the progress was painfully slow. did not speak-

making it nearly impossible for us to communicate with her. Everyday at night I

would kiss , and standing over her head I would say, " please start talking

tomorrow " - subliminal messages - hoping they'd work.

To no avail, my child was just not talking. Therapy helped, but progress was

limited. I don't want to continue with this sob-story, as you probably all

understand the fear and frustration in parents and the child as well.

After becoming involved with