Re: Response to !

[Guest guest]

We had such a tremendous response to fish oil when started

it, so you can imagine my tremendous disappointment when TWO

teaspoons of the liquid did nothing for Tyler. And he's only 19

months old, so that's a pretty big dose.

Since we didn't do mB12 shots with , I really didn't have any

expectations at all. I have been as thrilled with those shots for

Tyler as I was with the fish oil for . And I have a great

story...

Yesterday, I said " I love you, Tyler! " and I SWEAR he said " I love

you, too! " It was a little garbled, and the " too " was probably

really " Tyler " , but I cried I was so happy. And of course, now I'm

frustrated, because I've been saying " I love you, Tyler! " all day and

I can't get him to say it again. He just laughs at me, like he knows

what I'm trying to do.

The bottom line is that every child is different, and there is no one

cure or path that will work for everyone. And if, along the way, you

can make them more happy or comfortable or healthy with a supplement

or without a food, it is so worth it.

I'm sorry you feel like an island -- it's like that for a lot of us.

My sister has been on a similar path with her two girls, so I have

one person I can talk to (mostly on the phone, unfortunately) in real

life that gets it. Please don't feel unwelcome here!!! And you and

anyone else out there can always email me offline for a virtual hug,

prayers, or personal opinions. This darn computer is in my playroom,

so I'm usually close by.

in NJ

[Guest guest]

My sister saw an experienced and well-respected ABA therapist speak

at a special ed. PTA event at her school, and she said it was a

revelation. One very funny fact: he uses ABA to teach golf. Yep,

you read that right. Don't ask me how -- I know nothing about ABA.

Just throwing it out there to point to the use of ABA outside of the

autism arena.

in NJ

[Guest guest]

Carolyn as a member here for years you are a fighter for your

daughter who always has an open mind and tries what worked for most

first. Your daughter is very fortunate to have you as a mom as you

have sought out the best doctors and tried everything to help her

from when you first found out about her delayed myelinization back

when she was a wee one - until today. As you know the road can be

easier or harder depending upon variables. I've always said that if

fish oils didn't work I'd try other things too. I guess I just don't

understand when someone doesn't even try what works for most and

starts with strategies that most of us know are not appropriate or

don't work. That's a choice of the parent -not like you since you

tried the easy way and unfortunately the answer for your daughter -

just like her condition -is a bit more complex. So I didn't mean

hard road in regards to you -I meant to choose the way that didn't

work for most...first.

Many people who answer the new parents who post all the time now feel

intimidated - one mom was jumped on for just asking why would you do

all you do? So yes we all should be considerate.

=====

[Guest guest]

,

You are coming down on me for not responding to each and every

comment in your earlier post to me. I wrote that I was briefly

responding to some things based on the fact that I wanted to spend

some time with my boys before they go to bed. You are insinuating

that I'm choosing a harder road instead of choosing what " works for

most. " But haven't I already stressed that I've only just recently

joined this discussion group? Therefore, how could I have been

choosing a more difficult road when I only recently learned of your

recommended fish oil and vitamin E cocktail? You aren't even

validating the positive effects I've seen in my son from the GF/CF

diet. And I started the diet about 11 months ago....long before

joining this discussion group. And if I'd joined this discussion

group 11 months ago I'd still be searching out other help for my son

based on his extreme blow-out poops or extreme constipation....and

probably would have ended up with the DAN! doctor based on his issues

as a globablly developmentally delayed child. , I'm so sad for

you. So many of your emails don't make sense. I encourage you to go

back and read your posts. You are so quick to jump on people. You

are coming down on me for what I didn't respond to in your

email....and yet you can't make a public acknowledgement of your

error in calling methyl-B12 shots " vaccines. " You know, I've

searched many of the archives in this discussion group. I find it

interesting that years ago when you were in the earlier stages of

your journey with Tanner you wrote posts about HBOT and cranial

sacral therapy. Weren't you also a mom longing to find help (ANY

HELP) for your son? Your comments are ignorant....AND EXTREMELY

HURTFUL....to us moms with kids who ARE " TOUGH NUTS TO CRACK. " You

don't know what I've been thru since he was a baby. And now he's

almost 3. I haven't even posted everything I've been thru with

him....only the basics. So even to say that he's too young for me to

know if he's a tough nut to crack when he's getting 13 hours of

therapy every week and has been hospitalized several times....almost

died of respiratory distress..... was burned....had skin

grafting.....thought he was having seizures.....etc. etc.

ENOUGH!!!!!!!!!!!!!!! And you couldn't even give me any kind,

parting words as I did to you in my last post.

AGAIN, LISA, " WITH LOVE AND APPRECIATION FOR ALL YOU DO....FOR ALL

YOU STAND FOR......AND WITH ENVY THAT YOUR SON ONLY HAD APRAXIA OF

SPEECH "

[Guest guest]

Not even ABA could help my golf game.

>

> My sister saw an experienced and well-respected ABA therapist speak

> at a special ed. PTA event at her school, and she said it was a

> revelation. One very funny fact: he uses ABA to teach golf. Yep,

> you read that right. Don't ask me how -- I know nothing about ABA.

> Just throwing it out there to point to the use of ABA outside of the

> autism arena.

>

> in NJ

>

[Guest guest]

The one thing I don't get that is repeated as fact here and I am not

sure is, is why do these people go to things before fish oil and E?

Well, I have not read of people not doing it first but I could have

missed that as I have only been here since May. We did it later

because my son was getting surgery so I thought I could not. Plus, I

have an iodine allergy and was warned not to pursue fish oil for my

son because of that. Then we saw word loss after the reintro of milk

after the tube surgery. That is why I took him off milk. Then I

learned other things and addressed water and gluten and confirmed the

likely necessity via GI. Right now we are having the best language

yet. It started coming in after two weeks of worrisome stools. We

actually then started fish oil after the surge and on the on and off

fish oil days we see good stuff. I am actually using the fish oil to

address skin issues. So, if we are the people, that is our story.

One other thing: It has been stated at least two times that I am

doing so much for my kids and am not the norm. What I am doing is a

medically supervised from scratch GFCFSF diet with an eye towards

getting in vitamins and minerals via food. That's it other than the

recent fish oil. I do plan to go to NACD and I do take my son once

weekly to Prompt Therapy now that EI ended. But that is it. I went to

a DAN, D.O. family doc but so far have been too chicken to pursue the

testing. He takes insurance. I remain in search of the perfect

multivitamin but this is our story.

Just wanted to clarify.

>

> Wow, can we please be considerate of each other! and others

don't need

> to learn things the hard way. One way doesn't always work for

everyone, and

> as parents we need to get that. I wish to God that fish oils

worked for my

> daughter. They were like a miracle in the beginning, and I wish I

could figure

> out if there is something else I need to give her to keep the

progress going.

> I am an open minded person, as we all should be, and will try

anything safe.

> I am trying the vitamin E as well.

>

> But it is soooo depressing for parents to keep hearing that this or

that

> worked for others and have it said in a manner that their judgement

is being

> questioned. As said, some comments cut like a knife.

>

> These are parents desperate to get help for their children. Just

because

> some therapy or treatment wasn't necessary for one child (and that

is

> wonderful), doesn't mean that the therapy or treatment isn't

necessary or beneficial to

> another.

>

> There are many reasons why special needs children have their heart

checked

> or eyes. Kids with low tone sometimes have issues with their heart

and eyes.

> The heart is a muscle. I was worried that my daughter's heart

could be enlarged

> because she had apnea for a while which can caused an enlarged

heart. But

> she didn't. Her OT recommended that the eye doctor check out her

eyes, but they

> were fine. I don't think I am wrong to have checked these issues

out.

>

> I tried the gluten and ceisin free diet with my daughter for more

than a

> year. No progress was seen, but I have no doubt it has helped many

kids.

>

> We didn't have a great experience with ABA, but I know and believe

parents

> who say their kids were helped.

>

> Peace everyone. Carolyn

>

>

>

> **************Ideas to please picky eaters. Watch video on AOL

Living.

> (http://living.aol.com/video/how-to-please-your-picky-eater/rachel-

campos-duffy/

> 2050827?NCID=aolcmp00300000002598)

>

>

>

[Guest guest]

Hi ,

This girl who you are referring to is my own daughter ! ABA

traditional or not is not for all children. My daughter was harmed

is so many ways. I am glad the program you are using with you son is

working. We tried other

interventions as well with Mel and nothing worked. Each child is

different and what works for one may not necessarily work for

another. I truly enjoy reading the success stories. I believe those

stories give parents like me hope!

As far as being on a lone island, we lived in PA with no family but I

had friends who could relate not to Mel's challenges but to their own

child's challenges. Each day Mel would attend the Easter Seals

preschool program

and have all three therapies and just was not progressing like my

friend's children. Come to find out Mel was the only one in that

program who had severe global apraxia. When Mel was young the

information and services

available to global apraxia were limited. There was no internet back

then for me to search for answers and try to get help.

Now we are in Georgia and we still seek treatment for our daughter.

That has been a long and difficult road to find doctors and

therapists who understand and are willing to work with a young adult

with Mel's severe global apraxia. For me

this journey that I have been on with Mel is not about being painful

or difficult but one of being able to fight for what is right and

being able to make changes along the way. I have also made some

great friends along the way and one of them

being .

Mel has two younger sisters. Mel's one sister Mindy decided she was

going to become a personal trainer and was certified and works with

Mel. Mindy also attends a University here in Georgia where she is

in their physical therapy

program. Mindy believes by her becoming a licensed physical

therapist she will be able to help her sister even more. Mel's

youngest sister is a runner and holds the counties fastest running

time for cross country and track for her age group. Her sister is

also involved in a running club here in Atlanta and runs about two to

three races a month as well. This has also been a great experience

for Mel as now Mel is running a slow pace with her sister and has

become interested in trying to prepare for

a race one day.

Mel still has the dream of communicating verbally one day but until

that day comes she has a new dynawrite that she uses. Mel has made a

list of goals for herself and works on achieving them each and every

day. With the support that Mel

has from her family, friends, and medical/therapy team I believe she

will reach her goals one day.

I truly felt I needed to respond to this post due to paragraph #4. I

felt like I was personally being attack by your post. If you have

questions about Mel's situation or comments, I would be more than

happy to answer them off list. I believe you

could have used a different approach then the one you chose to use in

paragraph #4.

I just want to say thank you to for starting this group and all

the support she has given to me and my family thru the years.

Robin

On Feb 29, 2008, at 20:23, spearson40 wrote:

> ,

> With all due respect, I believe you've overstepped your bounds. I've

> been keeping quiet on so much I'm reading. But now that you've

> posted an email to me....I need to respond on a few things quickly as

> I'm trying to give my 2 cuties some attention. I may write more

> later:

> (1) Again, a public assertion that I'm " freaking out " was totally

> uncalled for.

> (2) You again have referred to B12 as vaccines even after tried

> to clarify that to you????? MB12 shots ARE NOT VACCINES. And do you

> know that I briefly saw the Owen that I though might " be in there "

> the other morning after his shot? (And one of his therapists

> witnessed it, as well.) This is not sensationalism. This is a mom

> with a gut feeling.

> (3) As my regular pediatrician says.... " Blue eyed people were never

> meant to be drinking milk from brown-eyed cows. " MEaning, he doesn't

> believe (as many in the mainstream medical community would agree)

> that milk was ever meant for humans to be consuming. That said, when

> I switched my child last Spring to a GF/CF diet....we saw consistent

> bowels (for the first time in 2 years) AND a clearing up of his

> eczema, for the most part. Is that enough of a reason to keep him on

> the diet? Absolutely! Because it's not all about a diagnosis, as

> far as I'm concerned. It's about his gut, as well, and his overall

> well-being.

> (4) Owen's ABA isn't the traditional type...and your link about this

> girl and the potential psychological effect upon her from having

> ABA . What's that all about? I clicked on her link and couldn't see

> anything about ABA (was it even around back then given the fact that

> this girl is an adult?) Where's the discussion of ABA and the fact

> that it affected her psychologically? My son's ABA therapist

> overlaps with his speech therapist (who IS USING PROMPT AND KAUFFMAN,

> ALONG WITH OTHER SPEECH THERAPY TECHNIQUES.)

> (5) My son has been on 1 tsp. of liquid Omega 3-6-9 since last Spring

> and I've seen no major benefits for either of my dyspraxic boys.

> (You can go to Nordic Natural website and look at how concentrated

> the tsp. of Omega 3-6-9 is.) I didn't discontinue and the first

> thing I did when joining this group was go out and buy ProEPA and

> vitamin E ...and have been supplementing with that for almost 2 weeks

> now. Sure, a " little " bit of improvement in speech. I guess we'll

> see. Or maybe I have to go to 3 times a day of dosing, and bump up

> the Vitamin E from the current 400 IU's.

>

> In all honesty....I was FINALLY hopeful to have found this discussion

> group! But now I'm not so sure. I'm like a lone island out here in

> California with no family or friends who can relate. I was hoping

> this discussion group could be that " safe haven " for me as I walk

> this VERY PAINFUL, DIFFICULT JOURNEY! And some times it cuts like a

> knife to read that your Tanner and many others found themselves

> mainstreamed with just the fish oil and vitamin E. But for kids like

> mine who are tougher nuts to crack....it's just not that easy.

>

> With love and appreciation for you and who you are and what you stand

> for....

> Pearson

> Mom of Owen, 33 months

>

>

> >

> > Hi !

> >

> > I unfortunately know about testing for global delays in children as

> > both my children were -Dakota especially as you can read in The Late

> > Talker book. Both of my boys went through extensive testing -

> genetic

> > for one -but I don't recall vision tests to be honest with you at

> all

> > for Tanner...but perhaps for Dakota it was done while he was in the

> > hospital after he was born?

> >

> > I use the words freak out to describe a new member who has a late

> > talker -communication impaired child who is now worrying about

> things

> > that the majority of us never worried about -cardiology and

> > ophthalmology. Especially when one reads your first message last

> > month. There are methods you are doing that are not recommended to

> > work for the majority.

> >

> > Is your older child in therapy still for his dyspraxia? The fish

> > oils and vitamin E therapy help that as well. Have you read any of

> > the messages from Dr. about her son -I've also posted

> > it too but not sure if I did since you joined.

> >

> > You don't say but what type of speech therapy is your youngest son

> > in? How often and is it individual? Did the neurologist and OT

> find

> > sensory issues as well? He should not be in ABA therapy unless he

> is

> > autistic. It's therapy that is appropriate for autistic children -

> > and if he is both autistic and speech impaired (such as apraxic)

> then

> > he needs modified ABA by a professional that understands apraxia.

> > There are members who are posting now that have a child that was not

> > autistic given ABA and at best it's a waste of time and money -and

> at

> > worst you end up with psychological damage on top of the impairment

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

> >

> > Fish oils can clear up the eczema -actually it's one of the signs of

> > a deficiency -here's a study

> > http://www.eczemaletters.com/2008/02/06/docosahexaenoic-acid-dha-

> supplementation-in-atopic-eczema-a-randomized-double-blind-controlled-

> trial/

> >

> > Cod liver oil is healthy as long as you don't do high dosages -

> > vitamin A is found naturally in the liver of the fish...but it's not

> > the formula of fish oils that works for most. Have you read The

> Late

> > Talker? Here's a link to show you how we found out the long hard

> way

> > that if it's the wrong formula -it probably won't work -or work

> > well. CLO is for just about for all the wrong formula

> > http://www.cherab.org/information/historyEFA.html Also in addition

> > to see surges on the right formula of an omega 3 and omega 6 formula

> > like Efalex, EyeQ or ProEFA -you need to stop the cod liver oil or

> > you change the formula and raise the omega 3 -mainly DHA too. If

> you

> > want to raise the omega 3 you want to raise the other omega 3 -the

> > EPA. If you want a good pure omega 3 for some reason -Coromega is

> > one of the best as it's high EPA.

> >

> > I was raised on a GFCF diet due to being diagnosed celiac as a child

> > and hated that diet even though I needed to be on it. I spent years

> > in and out of hospitals at that time until they figured out the

> diet -

> > so understand at times it's needed. However I can assure you that

> > when you go to in person group meetings and get to know everyone

> that

> > most do not put their child on special diets -and there is no

> > difference if you stop the diet -huge difference if you stop the

> fish

> > oils and vitamin E. If your child's tested to be on that diet for

> > life -then of course. I no longer am on any special diet and was

> > tested to not be celiac recently so much of what I hated I may not

> > have to have done -so I know what it's like -and I also know what

> > it's like if you had to be on one but perhaps didn't have to be. Do

> > things one at a time so you know what's worth doing and what is not.

> > For most -speech and oil therapy is all that is needed.

> >

> > One of my friends who is an MD gives herself B12 vaccines for her

> > diabetes. Anyone can use them -but as I posted you would want to

> > make sure your child's doctor gave the injections the first few

> times

> > due to rare but serious complications. But no -most here through

> the

> > years did not do B12 shots for their apraxic child -we never did

> > either.

> >

> > Apraxia is a motor planning disorder and can affect any part of the

> > body. Once on the right formula of EFAs and now vitamin E most of

> us

> > find our children are consistent. I know this post was written last

> > month -so if you have not seen any surges since -please just try

> what

> > worked for most of us. It's simple -relatively inexpensive and the

> > parents who all went down this route including me have children that

> > are mainstreamed with tons of friends. There is much hope -and it

> > doesn't always cost tons of money to find that light.

> > Dakota

> > http://www.cherab.org/information/familiesrelate/workandfamily.html

> > Tanner

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

> >

> > =====

> >

[Guest guest]

Robin it's so great to hear from you! Has it been that long that I

didn't even know the stories about your other daughters and how they help? How

beautiful!! In addition to therapy have you read the messages about

vitamin E? In addition to helping parents of late talkers -we need

to help those who fell through the cracks with apraxia that are now

teens and adults. to me will always be the real life Little

Mermaid. We don't always see that show at Hollywood Studios at

Disney -but just saw it the other week...and I think of 's

pretty smiling face. Did or Dr. Agin help? Is

speaking at all? If not -how is the augmentative device working for

her? Is she happy?

Please continue to stay here and help new members. I know that

's message hurt you but she too is a new member that has a child

that needs help. And there are many others like Deb who's a new

member who just posted about music therapy that has a child with

apraxia and sensory issues and wants to know more about what therapy

works. Speaking of learning things the hard way -many of us old

timers had no choice and had to learn things this way. For parents

like you Robin and a child with apraxia who is now an adult with

apraxia like and for others that had apraxic children around

twenty years ago like and Khalid -everything was the hard

road. It sounds like Georgia's being nice to you guys -now we just

have to help get talking more!

I would love to talk and if you are ever coming to Florida as I'd

love to get together at Disney! Rumor has it that it's a magical

place. BTW -any change with 's speech after she goes on any

high G force type rides? If she doesn't go on them what about

changes after a day at a water park?

=====