Help

[Guest guest]

Someone correct me if I'm wrong here but don't they HAVE TO accept the dx from the doctors? And paddling??? That's crazy! Sounds like this is a situation where this is the wrong school.

( ) HELP

My daughter is in a SED class at school. She got suspended from school the week of Thanksgiving for hitting her teacher's aide. They also asked me if paddling was an option for discipline. They have a behaior specalist who told me that my daughter does not have aspergers, all she has is adhd, which is out of control, even though my daughter has been diagnosed by multiple doctors and specialist. What should I do?

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[Guest guest]

Is the behavior specialist a doctor? and if so why is their opinion better than multiple Drs.? I would NOT let them paddle her for misbehavior if she is aspergers that will only make her worse. How old is your daughter? Does she have an IEP to address behavior and ways to help her calm herself before she gets to the point of hitting somebody?

( ) HELP

My daughter is in a SED class at school. She got suspended from school the week of Thanksgiving for hitting her teacher's aide. They also asked me if paddling was an option for discipline. They have a behaior specalist who told me that my daughter does not have aspergers, all she has is adhd, which is out of control, even though my daughter has been diagnosed by multiple doctors and specialist. What should I do?

[Guest guest]

Is paddling legal in your state? Isn't that corporal punishment? I've never heard of a school system that permits - or should permit - anything like that.

On 12/7/07, Toni <kbtoni@...> wrote:

Is the behavior specialist a doctor? and if so why is their opinion better than multiple Drs.? I would NOT let them paddle her for misbehavior if she is aspergers that will only make her worse. How old is your daughter? Does she have an IEP to address behavior and ways to help her calm herself before she gets to the point of hitting somebody?

( ) HELP

My daughter is in a SED class at school. She got suspended from school the week of Thanksgiving for hitting her teacher's aide. They also asked me if paddling was an option for discipline. They have a behaior specalist who told me that my daughter does not have aspergers, all she has is adhd, which is out of control, even though my daughter has been diagnosed by multiple doctors and specialist. What should I do?

[Guest guest]

First, I would put this stuff in writing. Write a follow up letter, CC copies to all sorts of people up the food chain, and just restate what is being told to you. Secondly, I would ask for the credentials of this "behavior specialist." Where did they train, what degrees do they have, are they legally eligible to dx children with disorder, what experience do they have in autism disorders, are they anything other than someone who likes beating children instead of designing an appropriate positive behavior plan. Good things to know! For instance, our last "behavior specialist" was just a Kindergarten teacher who took some behavior conferences and had an interest in autism. That was it for her credentials. You would be surprised sometimes who shows up for this job. Find out!

Third, I would NOT let anyone paddle my child and put that in writing. I didn't let them implement a negative behavior plan either. Once my lawyer said to me, exasperated, "But they have to have some way to give him consequences!" and I replied, "They have no clue what they are doing or what autism is and until they do, they will not punish my kid for having autism."

The law requires them to implement a POSITIVE behavior plan. I would request a "functional behavior assessment" in writing right away, then also state you would like to then meet to design a POSITIVE behavior plan.

I would also tell behavior person to get on the team or get lost. I would not waste my time arguing over a dx with someone who has no clue what they are talking about.

RoxannaAutism Happens

( ) HELP

My daughter is in a SED class at school. She got suspended from school the week of Thanksgiving for hitting her teacher's aide. They also asked me if paddling was an option for discipline. They have a behaior specalist who told me that my daughter does not have aspergers, all she has is adhd, which is out of control, even though my daughter has been diagnosed by multiple doctors and specialist. What should I do?

[Guest guest]

Patti, when you say "young man" is he in high school? The first thing that comes to my mind is: it sounds like he is avoiding school. Is he being picked on? bullies? teased? sometimes, kids are embarrassed to tell their parents or teacher that someone is teasing them. How is he getting along with his teachers? How is he with taking test? In NY, this is the month for state testings. lots of pressure this time of year. Just a thought RosePatti Journey <pjpoo78363@...> wrote: What do you do with a young man that won't go to school, when he gets sick of course I let him stay home, but then when I know he is well and has no fever, has been out of school for a week already. I wake him up this morning and he says he has a super bad sinus headache and can't go. Be a better friend, newshound, and know-it-all with Mobile. Try it now.

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[Guest guest]

How old Patty? used to & still tries that once in a while. I told him I could be fined & It will have to come out of his allowance. I said he has to go it was the law. He has been going without any problem but last night he was throwing up with an upset stomach & I thought he should stay home but guess what?..as soon as the bus left he was all better. Brat. Take care,BettyPatti Journey <pjpoo78363@...> wrote: What do you do with a young man that won't go to school, when he gets sick of course I let him stay home, but then when I know he is well and has no fever, has been out of school for a week already. I wake him up this morning and he says he has a super bad sinus headache and can't go. Be a better friend, newshound, and know-it-all with Mobile. Try it now.

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[Guest guest]

Home Schooling maybe or perhaps he's depressed, maybe take him to his doctor, rule out anything medical.

hugs and prayers

Wags! Wags! Wags!

Lowry

"There is no psychiatrist in the world like a puppy licking your face."

Author Ben

From: pjpoo78363@...Date: Mon, 14 Jan 2008 15:44:19 -0800Subject: ( ) help

What do you do with a young man that won't go to school, when he gets sick of course I let him stay home, but then when I know he is well and has no fever, has been out of school for a week already. I wake him up this morning and he says he has a super bad sinus headache and can't go.

Be a better friend, newshound, and know-it-all with Mobile. Try it now. Discover a magical Christmas destination. Visit asksanta.ca today!

[Guest guest]

What I do if mine don’t want to go

to school and they have symptoms that I can’t prove or disprove is I tell

them they can stay home if they wish but there will be no tv or computer.

When you are really sick you don’t feel like doing anything. They

usually decide to go to school unless they really aren’t feeling well.

Jolinna

From: [mailto: ] On Behalf Of Patti Journey

Sent: Monday, January 14, 2008 5:44 PM

Subject: ( ) help

What do you do with a young man that won't go to school, when he gets

sick of course I let him stay home, but then when I know he is well and has no

fever, has been out of school for a week already. I wake him up this

morning and he says he has a super bad sinus headache and can't go.

Be a better friend, newshound, and know-it-all with Mobile. Try

it now.

[Guest guest]

School refusal can be a really tough problem. We have gone through it with my now 19 yo, HFA. He just could no longer handle going to school, he was majorly depressed and he had a learning disability that was never remediated which made school difficult enough to begin with. The social part was too stressful, on top of everything else.

Finally, we had to take him out of school and the school provided tutoring for him. He finished the last two years of high school with a tutor, five hours a week at the library. He did really well that way and got good grades for the first time. Now he is back in school at a career center and doing ok with everything.

I would see a doctor first, find out if he is ok healthwise. See if he depressed and/or has anxiety problems causing him to refuse school. If he is overly anxious or depressed, medication might help. Or counseling might help.

Find out if he has enough supports at school - is the work too easy? too hard? Does he have friends? Is he getting teased or bullied each day? Or is he just overwhelmed with everything (finding his locker, changing in PE, getting homework turned in on time, etc.?) Make sure the school is providing him with the help he needs. And in the end, don't be afraid to ask the school for an alternate education placement like we did. You could also consider homeschooling, e-schooling or check into other options in your area.

If you put "School refusal" in google, you will find a number of articles on this subject that might help you as well. Good luck and if I can help with anything, let me know!

RoxannaAutism Happens

( ) help

What do you do with a young man that won't go to school, when he gets sick of course I let him stay home, but then when I know he is well and has no fever, has been out of school for a week already. I wake him up this morning and he says he has a super bad sinus headache and can't go.

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

Patty,You could send him to the doctor and let the doctor proclaim him okay and ready to go back to school. I've done that with my son sometimes when he won't give up the notion of being sick. Or you can ask what's going on that he doesn't want to go to school. Is he being bullied? Is he hopelessly behind in his work?My son, when he was 18, stopped going to school, too. It was due to bullying by the LD kids at his school. He couldn't take it any more. So we homeschooled him for a while. We sent him to school and had him read in the office for some social contact (a VERY small school).LizOn Jan 14, 2008, at 6:44 PM, Patti Journey wrote:What do you do with a young man that won't go to school, when he gets sick of course I let him stay home, but then when I know he is well and has no fever, has been out of school for a week already. I wake him up this morning and he says he has a super bad sinus headache and can't go.Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

>

> Hello,

> I am an MS patient, in our contry we have naltrexone

> in 25 mg tablets, what should I do to give 3 mg doses

> for use?

> Regards

>

> Send instant messages to your online friends

http://uk.messenger.

>

===========

This is for the 50mg and 25mg naltrexone tablets.

Liquid LDN: Acquire some ml measuring equipment from the baby section

of a Drug Store and a small bottle with a mess-on cap. Put 50ml of

water (distilled is best) and one 50mg " ReVia " Naltrexone tablet in

the small bottle and let it dissolve with a little time and shaking.

Now each ml of water in that small bottle contains 1 mg of Naltrexone.

At bedtime shake the bottle, take a desired dose (no more than 4.5ml),

chase it down with some water and store the small bottle in the

refrigerator. Some people have reported splitting the tablet in half

and dissolving it in 25ml of water to assure freshness every week. Use

Stevia sweetener from healthfood store to sweeten for taste, it is

quite bitter.

[Guest guest]

Go here and read:

http://goodshape.net/HomemadeLDN.html

>

> Hello,

> I am an MS patient, in our contry we have naltrexone

> in 25 mg tablets, what should I do to give 3 mg doses

> for use?

> Regards

[Guest guest]

Hi Tina and welcome!

OK since I already posted the almost famous new member archive once

today (and this would be twice so can't do that) I'll only post the

EFA part! Here it is! (and since the vitamin E part is confusing even

for those of us that have been here for awhile -as a newbie just focus

on the EFA stuff for now as the fish oils contain the vitamin E.)

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

Re: New To Board/long EFA and E archive

here's a pretty long archive on this which covers fish oils

dosage.

Good news is that you don't have to do the following all at once and

shouldn't. You want to know what's worth doing and what may not be

needed so add things one at a time and give a few weeks to a few

months at least in between. And -it doesn't matter if you understand

it all to start because most of us didn't either. Just start with

one capsule of the ProEFA (or Efalex or EyeQ or like Omega 3/6

formula) and give us the good news a day to three weeks from now. If

it works -it works pretty quick!

Lot's more info at

http://www.cherab.org/information/indexinformation.html#diet

The following is an old EFA archive from this group which has worked

in this group for years so it's up on the Speechville message

board.

Recently there are a few members who are staying with the same

formula -but raising the dosage to multi dosing two to three times a

day and anecdotally they are observing even more dramatic and

accelerated surges. Due to recent messages I want to clarify that

the following was for the average new member who in the majority

will have a child that is 2 to 4 years old. If your child is around

5 or older you will probably want to start at one a day just for a

week or so and then increase right away to two. Not that you won't

see any changes on the lower dosage but for older children the one a

day (which is comparable to the dosage in infant formula) may not be

enough. Most see the first surges in a day to three weeks almost

across the board. If following a low dose program -most see the

first plateau somewhere between 3-6 months and the second somewhere

between 6 months to a year following the lower dosage way. We don't

know yet as a group if and when plateaus are reached with higher

dosage supplementation. If however you hit a plateau at any point -

you probably want to look to increase dosage -especially if you are

at one a day with a 4 year old say.

You can run by your child's MD -start with the basic and observe and

go from there. With fish oils typically the changes are within one

day to three weeks almost across the board -so you'll know pretty

soon whether it's " working " ! Let us know the good news!

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

What fish oil should I give to my baby or child?

The confusion is more the brand names than the formulas. In

actuality there really is no such thing as a " children's EFA "

perfect for all children yet. However fish oils can be marketed to

children by making fun flavorings and smaller capsules. Most of

the parents I know squeeze the oil out of the capsule anyway -so

that's besides the point for most of our group.

EFAs are now in baby formula and food, and EFAs come and are used in

a variety of formulas for children for various reasons. Mainly we

hear about the use of them for healthy brain development in regards

to children and they are even proven to help with asthma!

Dosage that was used for years (again today it's a bit higher faster)

" I will use the following examples with the brand name ProEFA since

that's the formula/dosage that seems to work the best for most of us

(Efalex and EyeQ are similar Omega 3/6 formulas that also have good

reports) For any brand name of Omega 3/6 formula -you could make

the same formula by mixing together fish oil and either primrose or

borage seed oil if you prefer -or as found -another brand

name with a similar formula (and I hope also a good quality)

If you mix two fish oils together which is fine if you know why you

are doing that: Look at the amount of DHA, EPA (Omega 3) and the

amount of GLA (Omega 6) and then add them all together to see what

formula and dosage you now have is. So for those of you that ask -

you can mix any brand names together you would like -however what

you could change is the three things above (dosage, formula and

*quality (*if one of the companies you start using has rancid oils

which is not uncommon when it comes to fish oils -so make sure all

brands you use are pure) Keep in mind in anecdotal feedback done by

parents from all over through CHERAB -that pure Omega 3 or pure

Omega 6 either showed no results -or very little results in almost

all cases. Pure Omega 3 would include pure cod liver oil, fish oil,

flax seed oil without any Omega 6. So even though there is only a

small amount of GLA (Omega 6) in the formulas we found to be

successful -GLA appears to be important to be there for some

reason. GLA has anti-inflammatory properties which perhaps enable

to DHA and EPA to get to where it's needed in the brain?

Dosage of one capsule a day ProEFA that at the lowest dosage appears

to be the best -

148 mg EPA

99 mg DHA

40 mg GLA

There is much more in the archives both here -as well as more

information at

http://www.cherab.org/information/indexinformation.html#diet

EFA information

http://www.cherab.org/information/indexinformation.html#diet

EFA tips and sources

http://www.cherab.org/information/dietaryeffects/efatips.html

http://www.cherab.org/information/dietaryeffects/efabasics.html

About mercury and fish oil (vs. eating fish)

" Fish oils have been tested for various heavy metals like mercury

and there has been enough preliminary proof through studies, as well

as theory from reputable sources, that as I've posted many times

I've heard that the oils from fish may be the safest way to get the

benefits of the EFAs without the toxins due to the fact that mercury

etc. binds to the proteins/muscles of the fish. " Measurement of

mercury levels in concentrated over-the-counter fish oil

preparations: is fish oil healthier than fish? "

" CONCLUSIONS: Fish are rich in omega-3 fatty acids, and their

consumption is recommended to decrease the risk of coronary artery

disease. However, fish such as swordfish and shark are also a source

of exposure to the heavy metal toxin, mercury. The fish oil brands

examined in this manuscript have negligible amounts of mercury and

may provide a safer alternative to fish consumption. "

Division of Laboratory Medicine, Department of Pathology,

Massachusetts General Hospital and Harvard Medical School, Boston,

Mass 02114, USA.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=1\

4632570 & dopt=Abstract

And one other thing to keep in mind for those like me who do eat

both fish and take fish oil, there are toxins in the fish you eat

that won't be in the oil For example while mercury etc. binds to

the protein (muscle of the fish) so it's not in the oil of the

fish. From what I've read -the largest problem with fish oil itself

is rancidity. Oxygen and fish oil doesn't mix well. Pharmaceutical

brands of fish oil are typically tested low in peroxide

levels/rancidity. Consumer Reports had this to say (most likely

because toxins in many cases bind to the protein and most oils are

not tested for rancidity)

" Consumer Reports tested 16 top-selling fish-oil pills which, like

other supplements, aren't closely regulated by the FDA.

Consumer Reports' Metcalf says the test results are

reassuring, " We found that all 16 brands that we tested had the

amount of Omega-3s that they said they did, which is good news. And,

we don't always find that with supplements. "

Since fish can contain toxins, Metcalf says Consumer Reports also

checked the supplements for purity, " We tested for three kinds of

toxins that often appear in fish - mercury, dioxin, and PCBs. "

Testers didn't find significant levels of toxins in any of the pills

tested, so you don't have to worry about contaminants. "

http://abclocal.go.com/kfsn/features/consumerwatch/consumer_070303_omega3.html

" The omega-3 fatty acids offer some unique benefits, should they

prove to be truly effective mood stabilizers. The advantages of the

omega-3 fatty acids as mood stabilizers include the apparent acute

efficacy in both the manic and depressive phases of bipolar

disorder, their lack of toxicity, as well as high patient

acceptance. In addition, omega-3 fatty acids confer some health

benefits during chronic use, such as possible reduction in the risk

of a fatal myocardial infarction. In addition, the omega-3 fatty

acids have no documented adverse drug interactions, and appear to be

safe (and possibly beneficial) in pregnancy and in children. "

http://ods.od.nih.gov/news/conferences/w6w3_abstracts.html

" I had the wonderful opportunity to hear ph Hibbeln, M.D.,

Chief, Outpatient Clinic National Institute of Alcoholism and Alcohol

Abuse, NIH, Bethesda, land at the First Apraxia Conference

http://www.cherab.org/news/scientific.htm lecture about the

importance of PUFA -especially during pregnancy when you are growing

a brain inside you. If you don't consume enough PUFAs while

pregnant -the babies body will pull it from the mother's body. It's

his theory and research as to why so many mom's experience post

partum depression. http://www.beachpsych.com/pages/cc46.html In

additionit is proven that the PUFAs are important for cognitive

ability. http://neuroscience.nih.gov/Lab.asp?Org_ID=352

Here is a quote from the US Department of Agriculture,

Environmental Chemistry Laboratory, Agricultural Research Service,

20705, Beltsville, MD, USA

Brain-specific lipids from marine, lacustrine, or terrestrial food

resources: potential impact on early African Homo sapiens. The

polyunsaturated fatty acid (PUFA) composition of the mammalian

central nervous system is almost wholly composed of two long-chain

polyunsaturated fatty acids (LC-PUFA), docosahexaenoic acid (DHA)

and arachidonic acid (AA). PUFA are dietarily essential, thus normal

infant/neonatal brain, intellectual growth and development cannot be

accomplished if they are deficient during pregnancy and lactation.

Uniquely in the human species, the fetal brain consumes 70% of the

energy delivered to it by mother. DHA and AA are needed to construct

placental and fetal tissues for cell membrane growth, structure and

function. Contemporary evidence shows that the maternal circulation

is depleted of AA and DHA during fetal growth. Sustaining normal

adult human brain function also requires LC-PUFA.Homo sapiens is

unlikely to have evolved a large, complex, metabolically expensive

brain in an environment which did not provide abundant dietary LC-

PUFA.

http://www.unl.ac.uk/ibchn/e_Link/cbpbbmb2002.htm

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 Acids)

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.

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 "

Difference between Omega 3/6 oils and other types of oils like CLO

ProEFA is an Omega 3 (DHA and higher EPA) formula with a small

amount of Omega 6 (GLA) The Omega 3 in the ProEFA is from fish oil -

not from the liver of the fish -so no vitamin A. Only fish oil made

from the liver of the fish contain vitamin A.

Children's DHA is cod liver oil which since it's from the liver of

the cod fish, it naturally contains Vitamin A. Cod liver oil only

contains Omega 3 (DHA and EPA) Here's some information from the

professional anecdotal feedback which is part of the history of this

group http://www.cherab.org/information/historyEFA.html

" Most of our experience is with one, 1.0 gram capsule of ProEFA

(Complete Omega) that contains 144 mg EPA, 99 mg DHA and 40 mg of

GLA. We know that this combination appeared to work well. There

were some other supplements used but we could not conclude anything

about them. I can only say that both EPA and DHA are important and

GLA appears to have an additional positive effect on speech.

ALA, linoleic and oleic acids in " The Total Omega " contribute very

little to the EPA, DHA, and GLA effect.

I see at least 2 possibilities that you could use if you decide to

make the transition from short-chain omega-3s in plants (flax seed

oil containing alpha-linolenic acid or ALA, C18:2n-3) to the long-

chain mixture of EPA (C20:5n-3) and DHA (C22:6n-3). These are DHA

Jr. (30 mg DHA and 20 mg EPA in a serving unit) and Coromega (350 mg

EPA and 230 mg DHA). Both of these have been anecdotally successful

in the past.

Coromega can be divided in two and taken one half in the morning the

other in the evening. If you choose this mode you will provide your

son with the equivalent EPA+DHA of 2 ProEFA capsules per day without

the GLA.

Flax seed oil or freshly ground flax seeds are an excellent source

of the essential omega-3 alpha-linolenic acid (ALA or LNA) which is

the quintessential parent member of the omega-3 family of essential

fatty acids (EFAs). The body transforms it into EPA and the EPA

into DHA. This transformation is very inefficient (the yield is

about 10%) and is further inhibited by over consumption of omega-6

fatty acids from most vegetable oils or certain disease states.

Therefore, it is advisable to independently consume also ready made

EPA and DHA from good quality fish of from high quality fish oil

supplements. Some recommended intakes are listed on the

Introductory lecture on EFAs that I gave at the First Conference on

Therapy of Verbal Apraxia, July 23-24, 2001, town, NJ. (

http://www.cherab.org/news/scientific.html )

The CHERAB Foundation's positive research results on potential

improvement in speech following EFA supplementation are based

on the use of ProEFA (Complete Omega) and that contains also

another essential fatty acid, GLA which is an omega-6 fatty acid.

The latter appears to be beneficial to children with apraxia. It is

not present in flax seed/flaxseed oil.

None of these materials present with any known side effects or

known toxicity in an otherwise healthy person. Nevertheless, we

advise every user of supplements to use them under medical

supervision. We don't know your child and we cannot provide you

with medical advice.

Sincerely,

Katz, Ph.D. "

As we all know the complete cure we may be closer to by adding

vitamin E to the EFAs...goodness knows that today just about any

stranger who would see Tanner wouldn't have a clue of what he went

through -and even if they had a conversation with him they probably

would just think he has a mild speech issue. They wouldn't know that

he still struggles with some simple motor planning when it comes to

buttons and ties...he can do it -but slow and delibratly like he was

much younger -not 11. Unless they were a doctor they would have no

clue that he doesn't feel pain like others do. Imagine how horrified

the parents of his one friend were to find out he broke his finger at

their home playing football. He doesn't cry -he asked for some ice

and then sat out a bit -then he kept playing. When I went to pick

Tanner up he didn't want to leave as they were all still swimming.

It wasn't until his finger swelled up and bruised that I knew he

broke it. Nobody in the ER thought it was broken however because

Tanner was so laid back about it and didn't rank the pain level

high. The X Ray showed however it was. When the doctor at the ER

touched areas around the break and said " does this hurt " he calmly

said " no " When he touched right where the break was and asked " does

this hurt " Tanner calmly answered " yes " but didn't flinch! The

doctor said " wow he doesn't feel pain like others. Too bad he wasn't

a woman he wouldn't need an epidural. " If you ask Tanner about it -

Tanner says he feels pain.

When we first started the vitamin E he seemed to feel pain even more

than normal -which was very awesome...but it seems to have faded

which is why I know I need to change the E formula -because our

change on E is mainly sensory....but I don't even think the issue is

that Tanner doesn't want to take more capsules -I believe that Tanner

is very happy with the way he is. I'm starting to see more about why

adults diagnosed with this or that condition will rebel

against " cures " To them what they know and live with is normal. And

again -to most that just met Tanner today at 11 years old on a street

and asked him directions etc. -they 'would' think he is " normal " And

not just them -Tanner believes himself to be too.

http://www.debtsmart.net/talk/tanner.html

=====

[Guest guest]

Thank you - still not as clear as I hoped but sounds like ProEFA -

one capsule per day is the way to start and go from there. Thanks

again.

Tina

>

> Hi Tina and welcome!

>

> OK since I already posted the almost famous new member archive once

> today (and this would be twice so can't do that) I'll only post

the

> EFA part! Here it is! (and since the vitamin E part is confusing

even

> for those of us that have been here for awhile -as a newbie just

focus

> on the EFA stuff for now as the fish oils contain the vitamin E.)

>

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

>

> Re: New To Board/long EFA and E archive

>

> here's a pretty long archive on this which covers fish oils

> dosage.

>

> Good news is that you don't have to do the following all at once

and

> shouldn't. You want to know what's worth doing and what may not be

> needed so add things one at a time and give a few weeks to a few

> months at least in between. And -it doesn't matter if you

understand

> it all to start because most of us didn't either. Just start with

> one capsule of the ProEFA (or Efalex or EyeQ or like Omega 3/6

> formula) and give us the good news a day to three weeks from now.

If

> it works -it works pretty quick!

>

> Lot's more info at

> http://www.cherab.org/information/indexinformation.html#diet

>

> The following is an old EFA archive from this group which has

worked

> in this group for years so it's up on the Speechville message

> board.

>

> Recently there are a few members who are staying with the same

> formula -but raising the dosage to multi dosing two to three times

a

> day and anecdotally they are observing even more dramatic and

> accelerated surges. Due to recent messages I want to clarify that

> the following was for the average new member who in the majority

> will have a child that is 2 to 4 years old. If your child is around

> 5 or older you will probably want to start at one a day just for a

> week or so and then increase right away to two. Not that you won't

> see any changes on the lower dosage but for older children the one

a

> day (which is comparable to the dosage in infant formula) may not

be

> enough. Most see the first surges in a day to three weeks almost

> across the board. If following a low dose program -most see the

> first plateau somewhere between 3-6 months and the second somewhere

> between 6 months to a year following the lower dosage way. We don't

> know yet as a group if and when plateaus are reached with higher

> dosage supplementation. If however you hit a plateau at any point -

> you probably want to look to increase dosage -especially if you are

> at one a day with a 4 year old say.

>

>

> You can run by your child's MD -start with the basic and observe

and

> go from there. With fish oils typically the changes are within one

> day to three weeks almost across the board -so you'll know pretty

> soon whether it's " working " ! Let us know the good news!

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

> What fish oil should I give to my baby or child?

>

> The confusion is more the brand names than the formulas. In

> actuality there really is no such thing as a " children's EFA "

> perfect for all children yet. However fish oils can be marketed to

> children by making fun flavorings and smaller capsules. Most of

> the parents I know squeeze the oil out of the capsule anyway -so

> that's besides the point for most of our group.

>

> EFAs are now in baby formula and food, and EFAs come and are used

in

> a variety of formulas for children for various reasons. Mainly we

> hear about the use of them for healthy brain development in regards

> to children and they are even proven to help with asthma!

>

> Dosage that was used for years (again today it's a bit higher

faster)

>

> " I will use the following examples with the brand name ProEFA since

> that's the formula/dosage that seems to work the best for most of

us

> (Efalex and EyeQ are similar Omega 3/6 formulas that also have good

> reports) For any brand name of Omega 3/6 formula -you could make

> the same formula by mixing together fish oil and either primrose or

> borage seed oil if you prefer -or as found -another brand

> name with a similar formula (and I hope also a good quality)

>

> If you mix two fish oils together which is fine if you know why you

> are doing that: Look at the amount of DHA, EPA (Omega 3) and the

> amount of GLA (Omega 6) and then add them all together to see what

> formula and dosage you now have is. So for those of you that ask -

> you can mix any brand names together you would like -however what

> you could change is the three things above (dosage, formula and

> *quality (*if one of the companies you start using has rancid oils

> which is not uncommon when it comes to fish oils -so make sure all

> brands you use are pure) Keep in mind in anecdotal feedback done by

> parents from all over through CHERAB -that pure Omega 3 or pure

> Omega 6 either showed no results -or very little results in almost

> all cases. Pure Omega 3 would include pure cod liver oil, fish oil,

> flax seed oil without any Omega 6. So even though there is only a

> small amount of GLA (Omega 6) in the formulas we found to be

> successful -GLA appears to be important to be there for some

> reason. GLA has anti-inflammatory properties which perhaps enable

> to DHA and EPA to get to where it's needed in the brain?

>

> Dosage of one capsule a day ProEFA that at the lowest dosage

appears

> to be the best -

> 148 mg EPA

> 99 mg DHA

> 40 mg GLA

>

> There is much more in the archives both here -as well as more

> information at

> http://www.cherab.org/information/indexinformation.html#diet

>

> EFA information

> http://www.cherab.org/information/indexinformation.html#diet

>

> EFA tips and sources

> http://www.cherab.org/information/dietaryeffects/efatips.html

>

> http://www.cherab.org/information/dietaryeffects/efabasics.html

>

> About mercury and fish oil (vs. eating fish)

>

> " Fish oils have been tested for various heavy metals like mercury

> and there has been enough preliminary proof through studies, as

well

> as theory from reputable sources, that as I've posted many times

> I've heard that the oils from fish may be the safest way to get the

> benefits of the EFAs without the toxins due to the fact that

mercury

> etc. binds to the proteins/muscles of the fish. " Measurement of

> mercury levels in concentrated over-the-counter fish oil

> preparations: is fish oil healthier than fish? "

>

> " CONCLUSIONS: Fish are rich in omega-3 fatty acids, and their

> consumption is recommended to decrease the risk of coronary artery

> disease. However, fish such as swordfish and shark are also a

source

> of exposure to the heavy metal toxin, mercury. The fish oil brands

> examined in this manuscript have negligible amounts of mercury and

> may provide a safer alternative to fish consumption. "

> Division of Laboratory Medicine, Department of Pathology,

> Massachusetts General Hospital and Harvard Medical School, Boston,

> Mass 02114, USA.

> http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?

cmd=Retrieve & db=PubMed & list_uids=14632570 & dopt=Abstract

>

> And one other thing to keep in mind for those like me who do eat

> both fish and take fish oil, there are toxins in the fish you eat

> that won't be in the oil For example while mercury etc. binds to

> the protein (muscle of the fish) so it's not in the oil of the

> fish. From what I've read -the largest problem with fish oil itself

> is rancidity. Oxygen and fish oil doesn't mix well. Pharmaceutical

> brands of fish oil are typically tested low in peroxide

> levels/rancidity. Consumer Reports had this to say (most likely

> because toxins in many cases bind to the protein and most oils are

> not tested for rancidity)

>

> " Consumer Reports tested 16 top-selling fish-oil pills which, like

> other supplements, aren't closely regulated by the FDA.

> Consumer Reports' Metcalf says the test results are

> reassuring, " We found that all 16 brands that we tested had the

> amount of Omega-3s that they said they did, which is good news.

And,

> we don't always find that with supplements. "

>

> Since fish can contain toxins, Metcalf says Consumer Reports also

> checked the supplements for purity, " We tested for three kinds of

> toxins that often appear in fish - mercury, dioxin, and PCBs. "

>

> Testers didn't find significant levels of toxins in any of the

pills

> tested, so you don't have to worry about contaminants. "

>

http://abclocal.go.com/kfsn/features/consumerwatch/consumer_070303_om

ega3.html

>

> " The omega-3 fatty acids offer some unique benefits, should they

> prove to be truly effective mood stabilizers. The advantages of the

> omega-3 fatty acids as mood stabilizers include the apparent acute

> efficacy in both the manic and depressive phases of bipolar

> disorder, their lack of toxicity, as well as high patient

> acceptance. In addition, omega-3 fatty acids confer some health

> benefits during chronic use, such as possible reduction in the risk

> of a fatal myocardial infarction. In addition, the omega-3 fatty

> acids have no documented adverse drug interactions, and appear to

be

> safe (and possibly beneficial) in pregnancy and in children. "

> http://ods.od.nih.gov/news/conferences/w6w3_abstracts.html

>

> " I had the wonderful opportunity to hear ph Hibbeln, M.D.,

> Chief, Outpatient Clinic National Institute of Alcoholism and

Alcohol

> Abuse, NIH, Bethesda, land at the First Apraxia Conference

> http://www.cherab.org/news/scientific.htm lecture about the

> importance of PUFA -especially during pregnancy when you are

growing

> a brain inside you. If you don't consume enough PUFAs while

> pregnant -the babies body will pull it from the mother's body. It's

> his theory and research as to why so many mom's experience post

> partum depression. http://www.beachpsych.com/pages/cc46.html In

> additionit is proven that the PUFAs are important for cognitive

> ability. http://neuroscience.nih.gov/Lab.asp?Org_ID=352

>

> Here is a quote from the US Department of Agriculture,

> Environmental Chemistry Laboratory, Agricultural Research Service,

> 20705, Beltsville, MD, USA

>

> Brain-specific lipids from marine, lacustrine, or terrestrial food

> resources: potential impact on early African Homo sapiens. The

> polyunsaturated fatty acid (PUFA) composition of the mammalian

> central nervous system is almost wholly composed of two long-chain

> polyunsaturated fatty acids (LC-PUFA), docosahexaenoic acid (DHA)

> and arachidonic acid (AA). PUFA are dietarily essential, thus

normal

> infant/neonatal brain, intellectual growth and development cannot

be

> accomplished if they are deficient during pregnancy and lactation.

> Uniquely in the human species, the fetal brain consumes 70% of the

> energy delivered to it by mother. DHA and AA are needed to

construct

> placental and fetal tissues for cell membrane growth, structure and

> function. Contemporary evidence shows that the maternal circulation

> is depleted of AA and DHA during fetal growth. Sustaining normal

> adult human brain function also requires LC-PUFA.Homo sapiens is

> unlikely to have evolved a large, complex, metabolically expensive

> brain in an environment which did not provide abundant dietary LC-

> PUFA.

> http://www.unl.ac.uk/ibchn/e_Link/cbpbbmb2002.htm

>

> 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 Acids)

> 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.

> 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 "

>

>

> Difference between Omega 3/6 oils and other types of oils like CLO

>

> ProEFA is an Omega 3 (DHA and higher EPA) formula with a small

> amount of Omega 6 (GLA) The Omega 3 in the ProEFA is from fish

oil -

> not from the liver of the fish -so no vitamin A. Only fish oil made

> from the liver of the fish contain vitamin A.

>

> Children's DHA is cod liver oil which since it's from the liver of

> the cod fish, it naturally contains Vitamin A. Cod liver oil only

> contains Omega 3 (DHA and EPA) Here's some information from the

> professional anecdotal feedback which is part of the history of

this

> group http://www.cherab.org/information/historyEFA.html

>

> " Most of our experience is with one, 1.0 gram capsule of ProEFA

> (Complete Omega) that contains 144 mg EPA, 99 mg DHA and 40 mg of

> GLA. We know that this combination appeared to work well. There

> were some other supplements used but we could not conclude anything

> about them. I can only say that both EPA and DHA are important and

> GLA appears to have an additional positive effect on speech.

>

> ALA, linoleic and oleic acids in " The Total Omega " contribute very

> little to the EPA, DHA, and GLA effect.

>

> I see at least 2 possibilities that you could use if you decide to

> make the transition from short-chain omega-3s in plants (flax seed

> oil containing alpha-linolenic acid or ALA, C18:2n-3) to the long-

> chain mixture of EPA (C20:5n-3) and DHA (C22:6n-3). These are DHA

> Jr. (30 mg DHA and 20 mg EPA in a serving unit) and Coromega (350

mg

> EPA and 230 mg DHA). Both of these have been anecdotally successful

> in the past.

>

> Coromega can be divided in two and taken one half in the morning

the

> other in the evening. If you choose this mode you will provide your

> son with the equivalent EPA+DHA of 2 ProEFA capsules per day

without

> the GLA.

>

> Flax seed oil or freshly ground flax seeds are an excellent source

> of the essential omega-3 alpha-linolenic acid (ALA or LNA) which is

> the quintessential parent member of the omega-3 family of essential

> fatty acids (EFAs). The body transforms it into EPA and the EPA

> into DHA. This transformation is very inefficient (the yield is

> about 10%) and is further inhibited by over consumption of omega-6

> fatty acids from most vegetable oils or certain disease states.

> Therefore, it is advisable to independently consume also ready made

> EPA and DHA from good quality fish of from high quality fish oil

> supplements. Some recommended intakes are listed on the

> Introductory lecture on EFAs that I gave at the First Conference on

> Therapy of Verbal Apraxia, July 23-24, 2001, town, NJ. (

> http://www.cherab.org/news/scientific.html )

>

> The CHERAB Foundation's positive research results on potential

> improvement in speech following EFA supplementation are based

> on the use of ProEFA (Complete Omega) and that contains also

> another essential fatty acid, GLA which is an omega-6 fatty acid.

> The latter appears to be beneficial to children with apraxia. It is

> not present in flax seed/flaxseed oil.

>

> None of these materials present with any known side effects or

> known toxicity in an otherwise healthy person. Nevertheless, we

> advise every user of supplements to use them under medical

> supervision. We don't know your child and we cannot provide you

> with medical advice.

>

> Sincerely,

> Katz, Ph.D. "

>

> As we all know the complete cure we may be closer to by adding

> vitamin E to the EFAs...goodness knows that today just about any

> stranger who would see Tanner wouldn't have a clue of what he went

> through -and even if they had a conversation with him they probably

> would just think he has a mild speech issue. They wouldn't know

that

> he still struggles with some simple motor planning when it comes to

> buttons and ties...he can do it -but slow and delibratly like he

was

> much younger -not 11. Unless they were a doctor they would have no

> clue that he doesn't feel pain like others do. Imagine how

horrified

> the parents of his one friend were to find out he broke his finger

at

> their home playing football. He doesn't cry -he asked for some ice

> and then sat out a bit -then he kept playing. When I went to pick

> Tanner up he didn't want to leave as they were all still swimming.

> It wasn't until his finger swelled up and bruised that I knew he

> broke it. Nobody in the ER thought it was broken however because

> Tanner was so laid back about it and didn't rank the pain level

> high. The X Ray showed however it was. When the doctor at the ER

> touched areas around the break and said " does this hurt " he calmly

> said " no " When he touched right where the break was and asked " does

> this hurt " Tanner calmly answered " yes " but didn't flinch! The

> doctor said " wow he doesn't feel pain like others. Too bad he

wasn't

> a woman he wouldn't need an epidural. " If you ask Tanner about it -

> Tanner says he feels pain.

>

> When we first started the vitamin E he seemed to feel pain even

more

> than normal -which was very awesome...but it seems to have faded

> which is why I know I need to change the E formula -because our

> change on E is mainly sensory....but I don't even think the issue

is

> that Tanner doesn't want to take more capsules -I believe that

Tanner

> is very happy with the way he is. I'm starting to see more about

why

> adults diagnosed with this or that condition will rebel

> against " cures " To them what they know and live with is normal. And

> again -to most that just met Tanner today at 11 years old on a

street

> and asked him directions etc. -they 'would' think he is " normal "

And

> not just them -Tanner believes himself to be too.

> http://www.debtsmart.net/talk/tanner.html

>

> =====

>

[Guest guest]

Hello Tina and welcome to the group!

Fish oil can be confusing. I will paste a link in here that you can

buy your Nordic Naturals ProEFA and ProEPA from.

http://www.goestores.com/home.aspx?Merchant=shopinserviceinc2

There is also a folder in the link section for this group that may

help you also understand fish oil better.

/links

Folder> (Advice 101) Essential Fatty Acids - Fish Oil

In case you are still a little confused about dosing...here is the

basics that many here use. The ratio is 2 ProEFA and 1 ProEPA. Most

start with 1 ProEFA, wait a month or so, add the 2nd ProEFA, wait a

month or so add the 1 ProEPA. Give with a meal to help with

absorption. It may help to keep a notebook to write down

improvements-some parents do this. Some children also go through a

period of 4-5 days of behavioral changes or moodiness when EFAs are

started and then level off.

If you have more questions...ask away-someone here can probably answer any

questions you may have.

HTH,

Tina

Landon's mom

> > >

> > > I want to start my son who has verbal apraxia on some of the

meds

> > that

> > > many have been discussing EPA and EFA but I am really confused

> about

> > > dosages. Also is the best treatment to use both? Where does

> everyone

> > > buy these at? Found some on amazon.com but there were two

> different

> > mg

> > > dosages - so I didn't want to buy the wrong thing but would

> really

> > > like to see if it would help him.

> > >

> > > He is 6 and has been in speech since he was 2. We have tried

> fish oil

> > > in past but not sure that we did proper dosages.

> > >

> > > Thank you in advance for your help

> > >

> > > Tina E. (iowa)

> > >

> >

>

[Guest guest]

> --- I really need help, I posted this below earlier today, I am

> really concerned about the fungal part of the enzymes, we use houston

> and always have for 4 years, I would like to have an enzyme with no

> fungus, can anyone help.

From what I understand, fungus/mold is purified out. However, if it

still causes problems for your child, you would need rx to purchase

enzymes that do not use mold in the processing.

Dana

[Guest guest]

the pharmaceuticals are animal based and work in a pH range of 7 to 9. they

don't work in the stomach, they work in the duodenum. they don't releave the

work of the pancreas, they work great on inflammation.

there are limited plant enzyme growing plants in the world, and certain funguses

are better at making lipase, protease, etc and are vacuumed off and depending on

the manufacturing standards are put together in formulas and sold.

Re: HELP

> --- I really need help, I posted this below earlier today, I am

> really concerned about the fungal part of the enzymes, we use houston

> and always have for 4 years, I would like to have an enzyme with no

> fungus, can anyone help.

From what I understand, fungus/mold is purified out. However, if it

still causes problems for your child, you would need rx to purchase

enzymes that do not use mold in the processing.

Dana

[Guest guest]

Personally, I'd get a second opinion. Quickly. Maybe he has all of those things, but I'd want a 2nd opinion. I'd also like to hear from a professional how they can tell where the Aspergers ends and depression/bi-polar/ADHD begins. Just sounds like too much to me. And if he's on meds for all of these things, that can totally affect his behavior (side effects of meds.)

"Over-optimism is waiting for you ship to come in when you haven't sent one out."

From: klmckimmy <klmckimmy@...> Sent: Tuesday, April 14, 2009 8:16:57 AMSubject: ( ) Help

Hi my name is and I have a 13 yr old that was just diagnosed with AS, depression, bi polar, and border line ADHD. My poor son has been put on so many medicines for 7 years for all the above except never tested for AS. He was even put in a mental hospital and no one ever tested him. Sorry for me being on my soap box but I don't know what to do. He is having trouble in school and the school was trying to put me off on my ARD meeting but I called one. Does anyone have any advice on where to start.

[Guest guest]

Put all of your requests in writing. Request a full educational evaluation. Also, go to www.wrightslaw.com and learn about the sped process and your rights.

Roxanna

"Suppose you were an idiot. And suppose you were a member of Congress. But I repeat myself." ~ Mark Twain

( ) Help

Hi my name is and I have a 13 yr old that was just diagnosed with AS, depression, bi polar, and border line ADHD. My poor son has been put on so many medicines for 7 years for all the above except never tested for AS. He was even put in a mental hospital and no one ever tested him. Sorry for me being on my soap box but I don't know what to do. He is having trouble in school and the school was trying to put me off on my ARD meeting but I called one. Does anyone have any advice on where to start.

No virus found in this incoming message.Checked by AVG - www.avg.com Version: 8.0.238 / Virus Database: 270.11.56/2058 - Release Date: 04/14/09 06:17:00

[Guest guest]

If you're not sure go back to her ortho/clinician. However it usually only fits

one way. You can pull it open quite a bit, so don't worry about breaking it.

Just pull it open wide and put it on her head so the ears are lined up with

hers, and the forehead is centered. It sometimes helps if someone is holding

her, or if you put her in a bumbo seat or high chair.

-christine

sydney, 3.5 yrs, starband grad

>

> My daughter just got her helmet yesterday. I am scared I'm putting it on

wrong. Any suggestions? I keep second guessing myself. I keep messing with it.

It breaks my heart to see it on her. I didn't know it would be so hard.

>

[Guest guest]

I completely understand how you feel. When we found out that our son would need

a helmet I took it hard and dreaded it, but honestly, it's not been bad at all.

My son got his helmet a little more than a week ago and the first few days of

adjustment are the hardest because you are taking it off and putting it on so

frequently; however, after that things get better. Luckily, my son has

responded to his helmet really well. He made it easier on a very nervous mom

and dad. When I take it off and put it on I put him in his Bumbo chair or his

exersaucer and really spread it wide so that it doesn't rub on his head. I

always do it with the closure side facing me and then adjust it from the front.

The more you do it, the more you will get comfortable with it. My husband says

to look at it like getting braces -- it's short term for a round head for life.

Take care!

>

> My daughter just got her helmet yesterday. I am scared I'm putting it on

wrong. Any suggestions? I keep second guessing myself. I keep messing with it.

It breaks my heart to see it on her. I didn't know it would be so hard.

>

[Guest guest]

I haven't heard of any treatment options in Mexico. I'm not sure what it would

entail in terms of visas to have him come and stay with you. I'm assuming if he

did come you would have to pay for treatment out of pocket. If his head is

severe then you would definitely want to start treatment soon. Also you might

want to look at what options are available locally for you, so that if he can

come you know where to go. You have to have a prescription, which can come from

either a pediatrician, or a specialist such as a craniofacial plastic surgeon or

neuro surgeon.

In the meantime you should also make sure the baby's mom knows as much as

possible about plagio. The baby shouldn't rest on the flat spot if possible. For

example limit time in car seats, no swings, carry the baby, try to get him to

sleep resting on the prominent part of his head... Also he should be evaluated

for torticollis which is a big contributor to plagio in some cases. Tort is a

condition where the neck muscles are tight on one side, causing the baby to have

restricted neck movement and/or favor one side. If tort is present the parents

can learn to do stretches for the neck.

-christine

sydney, 4 yrs, starband grad

>

> My nephew in Mexico has been diagnosed with plagiocephaly. It is crucial that

I bring him with me here to take care of him as soon as possible. I am a US

citizen and have insurance but he is not a citizen and doesnt have insurance.

>

> I need to get him in treatment as soon as possible as he is already 6 1/2

months old. Could anyone tell me where can I find help for him!

>

> Sincerely,

>

>

>

[Guest guest]

We have just been told that my 3 month old grandson will need a helmet.The cost

is 2500.00 because he is on medicaid.(There is a discount for medicaid

patience.)They want us to come up with the money in less than 2 weeks.There is

no way we can do this.If this is a medical issuse why doesn't medicaid cover the

helmet?My main question is, Is there some organzation in North Carolina that

will help pay for the helmet?If so who and where?We are going crazy trying to

figure out what to do.PLEASE HELP US!!!!!!!!!!!

>

>

>

> From: shelles1908 <shelles08gmail (DOT) com>

> Subject: New to group - Star Band or Doc Band

>

> Plagiocephaly

> Date: Thursday, August 5, 2010, 1:52 PM

>

>

>  

>

> Hi, I'm new to the group. I just took my daughter this morning to Cranial Tech

and they recommended treatment via the Doc Band. This center is out of network

for my insurance and we do not know exactly how much insurance will pay (pay the

usual and customary, etc.) our deductable is higher for out of network, while

the in network deductable is lower and has been met. Then the co pay is 70/30.

With the cost of $3800 we'd like to be a little more certain of what we'd be

paying. I was told that the insurance could pay a rate of anywhere from $1700 to

the full price but nothing is for sure. So, worse case scenario, we'd be paying

the full $3800.

>

>

> The Star Cranial Center is in network and I have an appointment for my

daughter with them next week. I know that their contracted rate is $2515, if the

insurance will pay it. And if insurance does not pay it, they would charge us

the contract rate of $2515. As indicated, our in network deductable is already

paid and we have a 90/10 co pay if coverage.

>

>

> So, my question surrounds experience with Cranial Tech in Dallas, TX and Star

Cranial Center in Dallas and your opinion of the Doc Band by Cranial Tech and

the Star band? As far as money goes, the Starband is the best as it is in

network for our insurance. However, I want what is best for my daughter. So, I

don't mind paying for the Doc Band if it's better. Any opinions, suggestions on

the starband vs. docband?

>

>

> Thanks in advance, I'm already stressing out about this.

>

> Thanks again

>

>

[Guest guest]

I'm sorry, what a frustrating situation. The only thing I can think of is that

you could try applying for Care Credit and see if you qualify. It's a credit

card for medical expenses - www.carecredit.com. At least that would buy you some

time before you have to come up with the payment. Is there any helmet maker in

your area who will give you a payment plan. Good luck. I hope you can find a

solution.

> >

> >

> >

> > From: shelles1908 <shelles08gmail (DOT) com>

> > Subject: New to group - Star Band or Doc Band

> >

> > Plagiocephaly

> > Date: Thursday, August 5, 2010, 1:52 PM

> >

> >

> >  

> >

> > Hi, I'm new to the group. I just took my daughter this morning to Cranial

Tech and they recommended treatment via the Doc Band. This center is out of

network for my insurance and we do not know exactly how much insurance will pay

(pay the usual and customary, etc.) our deductable is higher for out of network,

while the in network deductable is lower and has been met. Then the co pay is

70/30. With the cost of $3800 we'd like to be a little more certain of what we'd

be paying. I was told that the insurance could pay a rate of anywhere from $1700

to the full price but nothing is for sure. So, worse case scenario, we'd be

paying the full $3800.

> >

> >

> > The Star Cranial Center is in network and I have an appointment for my

daughter with them next week. I know that their contracted rate is $2515, if the

insurance will pay it. And if insurance does not pay it, they would charge us

the contract rate of $2515. As indicated, our in network deductable is already

paid and we have a 90/10 co pay if coverage.

> >

> >

> > So, my question surrounds experience with Cranial Tech in Dallas, TX and

Star Cranial Center in Dallas and your opinion of the Doc Band by Cranial Tech

and the Star band? As far as money goes, the Starband is the best as it is in

network for our insurance. However, I want what is best for my daughter. So, I

don't mind paying for the Doc Band if it's better. Any opinions, suggestions on

the starband vs. docband?

> >

> >

> > Thanks in advance, I'm already stressing out about this.

> >

> > Thanks again

> >

> >

>

[Guest guest]

I live in NC and I have been on this group site for several months now and have not heard of any group to help with the cost of the band. Do you have a Hanger in your area? Their cost is only $1500.00. Have you looked into Care Credit? It is a credit card for medical finances. Good Luck in getting a band for your grandson. btw, My little Trevor has been in his Hanger band for 1 month now and is now measuring 7mm from 10mm. Again, good luck.

From: wandag <godfreywanda@...>Plagiocephaly Sent: Sat, August 14, 2010 12:28:25 PMSubject: Re: help

We have just been told that my 3 month old grandson will need a helmet.The cost is 2500.00 because he is on medicaid.(There is a discount for medicaid patience.)They want us to come up with the money in less than 2 weeks.There is no way we can do this.If this is a medical issuse why doesn't medicaid cover the helmet?My main question is, Is there some organzation in North Carolina that will help pay for the helmet?If so who and where?We are going crazy trying to figure out what to do.PLEASE HELP US!!!!!!!!!!! > > > > From: shelles1908 <shelles08gmail (DOT) com>> Subject: New to group - Star Band or Doc Band> > Plagiocephaly> Date: Thursday, August 5, 2010, 1:52 PM> > > Â > > Hi, I'm new to the group. I just took my daughter this morning to Cranial Tech and they recommended

treatment via the Doc Band. This center is out of network for my insurance and we do not know exactly how much insurance will pay (pay the usual and customary, etc.) our deductable is higher for out of network, while the in network deductable is lower and has been met. Then the co pay is 70/30. With the cost of $3800 we'd like to be a little more certain of what we'd be paying. I was told that the insurance could pay a rate of anywhere from $1700 to the full price but nothing is for sure. So, worse case scenario, we'd be paying the full $3800.> > > The Star Cranial Center is in network and I have an appointment for my daughter with them next week. I know that their contracted rate is $2515, if the insurance will pay it. And if insurance does not pay it, they would charge us the contract rate of $2515. As indicated, our in network deductable is already paid and we have a 90/10 co pay if coverage.> > > So, my

question surrounds experience with Cranial Tech in Dallas, TX and Star Cranial Center in Dallas and your opinion of the Doc Band by Cranial Tech and the Star band? As far as money goes, the Starband is the best as it is in network for our insurance. However, I want what is best for my daughter. So, I don't mind paying for the Doc Band if it's better. Any opinions, suggestions on the starband vs. docband?> > > Thanks in advance, I'm already stressing out about this.> > Thanks again> >