margaret

[Guest guest]

Margaret,

Do you mind if I forward this mosting to my MIL. She is always insightful with

Jake and my nephew who also has DS. Just wanted to check before I sen it to

her.

Thanks

Holly

> The doctor who gave the talk today is from Boston and just about

every pt with autism that shows up with behavioral problems is sent

over to a gastro doc and given a complete GI study. Most are treated

for GERD or other intestinal problems.

>

> Autism does not hurt!!! Any SIB, gut wrenching behaviors, head

banging, etc........something is wrong medically. Treating an

autistic kid is like veterinary medicine.......you don't know what is

wrong with the pt and may have to do extensive medical follow up to

find the problems if the child can't relate their pain. Even high

functioning autistic kids can't always tell you WHERE they hurt.

They know they hurt, but can't tell where. Hence, the

> behaviors get worse as the pain increases. You can have GERD and

not have vomiting,

> diarrhea, constipation, etc......only extreme behaviors.....and an

ulcerated

> esophagus that no one sees until they have an endoscopy. My own

son is a

> classic example of this.

>

> About eliminating dairy from their diets........they are seeing

Osteoporosis

> in young adults because people have eliminated gluten and dairy

> randomly......without medical approvals....*thinking* it will help

their child. Keep

> that in the back of your minds and try to find replacement calcium

> products/pills. Chelation also destroys calcium in the bones.

>

> Behavioral signs of GI issues......increase in negative behaviors;

increase

> in anxiety; increased aggression; presence or increase in SIB;

pressing on the

> abdomen or pressing against anything firm; sleep disturbances. Sound

> familiar to any of you? Causes........lactose intolerance, celiac

disease,

> Crohn's disease, GERD, ulcers, food sensitivities/allergies; side

effects from

> meds (including OTC meds like Mg, CoQ, Motrin, vitamins, etc.)

>

> Seizures......it is possible to have seizures and a normal EEG since

the

> seizures may be deep down. In one study, 66% of autistic kids had

seizures

> after the age of 12. 66% !!! Keep that in the back of your minds

when you

> think your kid is 'just zoning' out on you or ignoring you.

Seizures can show up

> as zoning out, twitching movements in arms/legs, jerking motions,

or over

> tiredness/sudden sleepiness. Another thing that she commented on

was that all

> of her pts who are on seizure meds are on name brand meds because

that way

> she can better control the seizures. All generic brands are not

the same. Her

> findings are that autistic kids have seizures 6-42% higher than the

normal

> population depending on the severity of MR and motor deficits. The

higher the

> severity of MR with motor def., then the higher the rate of seizures.

>

> Sleeping issues........if your kid is throwing fits and doesn't want

to

> sleep.....get them to a gastro doc for GERD. If they are up through

the

> night.....same story. Always r/o GERD first. Spandex PJ's for

kids who need that

> 'tight' snuggly feeling....along with their bed against the wall

for them to

> sleep against. If tonsils and adenoids are known to be

enlarged....get them

> out. Studies have shown that deprived non-ASD kids show increased

ADHD

> behaviors, daytime tiredness/crankiness, emotional/social problems,

and increased

> behavioral issues. Just think what it does to an autistic kid who

can't relate

> their feelings?

>

> Endocrine and hormonal disorders.......estrogen can be highly

epileptogenic

> and progesterone is a neuroinhibitory (sp) and can increase anxiety

levels.

> Someone mentioned the dangers of soy....very estrogenic. Major

fluctuations

> in estrogen and progesterone can cause major issues.....PMS, etc.

> DUH....don't us Moms know a little about that one?!?!? Daughters

with autism are no

> different.

>

> UTI's........r/o spastic bladder; urinary tract abnormalities; renal

> disorder/dysfunction.

>

> Allergies......allergies occur in 20% of the normal pediatric

population.

> Autistic kids are no different and should be treated accordingly.

>

> Infection........always keep a high index of suspicion....ear

infections,

> sinusitis, migraines, untreated strep, untreated Lyme disease, etc.

Unexplained

> changes in behavior or prolonged episodes of behavioral

abnormalities merit

> closer medical studies.

>

> Sorry this got so long. This lady, Dr Bauman, was very

interesting and her

> session was 3 hrs long. She started the LADDERS program in Boston.

>

> Take care, Everyone.

> Margaret

[Guest guest]

Being on only 50 mgs of Prednisone in the beginning, I cannot imagine being on

60mgs...Just took 20mgs and still feel hyper...I am still somewhat paranoid even

on the lower dosage now, and it's hard to organize my thoughts.

While I was on that dosage, (I am sensitive), I felt like I had drank 25 Coca

Colas. Everything around you is speeding crazily and you just want to yell out

STOP!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Not to mention, if someone was to even

look at me when I didn't want them to, I could have punched that person's face

(HARD!) without any hesitation at all.

I had to explain to each and every one of my students how I was feeling that

first week (I had a recital one week after the palsy hit and

couldn't cancel) so we would all stay calm.

It was mind over matter, except that at the same time my brain was feeling

scrambled?!?!? Somehow we all got a standing ovation at the end of the recital

nonetheless. That was a miracle!

I can't imagine a child/adult like ours on Prednisone.

Desi

Subject: Desi/a

To:

Date: Sunday, August 17, 2008, 1:12 PM

<<Am finally weaned down to 30mgs of Prednisone per day, but can't sleep

without " Restoril " and man does THAT pill make ME " see things " when I'm

sleeping.>>

Hi, Everyone.... Desi....Gareth was on Prednisone, Dec-Jan, for pneumonia

and it made him schizo!!! They started him at 60 mg and he had 21 days to work

down. He would lay down in bed at night and you could see the fear in his

eyes. I'd give him Benadryl, but after that wore off...about 4 hrs....he'd be

screaming like the devil was after him. It never occurred to me it was the

Prednisone till I read something about it causing nightmares and

hallucinations. It will be a cold day in H*## before I ever put him on that drug

again.

It took 2 weeks after he stopped taking it before he could sleep through the

night. Unfortunately, with Gareth, he couldn't *tell* me what was going on.

a....Gareth wanted to drive, too, so I sent him to Driver's Ed in HS.

That put an end to that desire!!! I think it clicked how hard it is to drive

a car. He can drive the lawn tractor, though...... no blades. A friend of

mine got her DS kid an old golf cart for him to drive around on their property.

Take care, Everyone.

Margaret

************ **Looking for a car that's sporty, fun and fits in your budget?

Read reviews on AOL Autos.

(http://autos. aol.com/cars- Volkswagen- Jetta-2009/ expert-review?

ncid=aolaut00030 000000007 )

[Guest guest]

Hi Margaret,

I do not think Zeb is bright enough to earn a college degree. He does plan on

attending the community college. I am just beginning to make my list of colleges

to tour. We do have a few colleges with programs similar to Gareth's school but

they are a drive for me. I am the driver and do not plan on spending my days in

college with Zeb. He still has three more years of HS. Zeb's comprehension is

very good but his reading and writing are very poor. The technology and note

takers enable him to succeed at school. He is having a comprehensive AT eval

next month with a superb AT consultant. I am anxious to learn what new software

the consultant will recommend. Zeb is interested in public speaking and

advocacy. I started this business for him 14 yrs ago so he would have a well

established business and full time employment after he finished school. He does

work a few hours here and there but does not really like it. He tells me the

boss doesn't have to work. What

was I thinking??? I will just have to wait a few more years.

Charlyne

Subject: Charlyne

To:

Date: Saturday, September 20, 2008, 7:54 PM

<<He plans to go to college after high school like Gareth>>

Hi, Everyone.... Charlyne. .......Zeb sounds like he is far ahead of Gareth

academically. I have always stressed that G goes to 'college' but he is not

getting marks or a degree. I don't want others to think that G is this super

smart DS/Autistic kid. He has never gotten passed the 3 rd grade when it

comes to comprehension even though he can sit down and read the paper because

of

his sight word knowledge. He is going through the school district's/PSU

Lifelink program which takes the kids out of the HS after their 'graduation'

and

gives them a college like experience while working on job skills and

independent living skills. I do know that there are DS kids who do go on to

real

colleges and do get some degrees..... ...this is not Gareth. Our kids can go

to

school till they are 21....this is his way of going to school till he's 21.

I just wanted others to know this.

Also.....over the yrs, many of us were have changed our views on inclusion.

I know that I had to for Gareth. I don't really care any more what the

class is called as long as they stress the academics... ....our kids can

learn!!!

I have never allowed Gareth to be a class that provided baby sitting service

all day and didn't try to educate the kids.

Take care, Everyone.

Margaret

************ **Looking for simple solutions to your real-life financial

challenges? Check out WalletPop for the latest news and information, tips and

calculators. (http://www.walletpo p.com/?NCID= emlcntuswall0000 0001)

[Guest guest]

Margaret,

Of course you can...... Ashton would love to have the dog there....... this is a

celebration of love and life........ a big party..... will probably have a few

dvd players set up with movies as well.......

Subject: Leah

To:

Date: Friday, September 26, 2008, 7:50 AM

Leah........ ........I am soooooooooooooo happy for you !!! Can I come and

'embrace Ashton' too?!?!? I will even bring my dog for Ashton!!!

M

************ **Looking for simple solutions to your real-life financial

challenges? Check out WalletPop for the latest news and information, tips and

calculators. (http://www.walletpo p.com/?NCID= emlcntuswall0000 0001)

[Guest guest]

Apologies Margaret when I share information that was sent my way and I

had just forward as is.

Anything to do with medical issues will always have a disclaimer so

apologies once again your way.

Irma

[Guest guest]

The reporter called today and said she was sorry...she forgot that I told her

that....lol she remembers ashton lining up the markers on the floor....... but I

am not going to beat her up...there is going to be a follow up piece... I am

helping compile a list of resources for teen moms in this area that she will

print.... THe bethany hall place I go is one of two places in the state of

virginia where you can go for substance abuse recovery and take your children

with you. It's nine months long..they specialize in pregnant substance

abusers....wonderful place to be....plus a great placed to donate stuff or

money...not that any of us have extra.........

 

and yes the first years of Ashtons' life were rough......but....we are here

today....

Subject: Leah

To:

Date: Thursday, November 20, 2008, 9:23 PM

Hi, Everyone.... .Leah.... .WOW..... ..I had no idea you had it so bad

initially. You are soooooooooo upbeat and goofy (around me, anyways!!!) Thank

you

for sharing with everyone. How come there was no mention of Ashton's autism?

Take care, Everyone.

Margaret

************ **One site has it all. Your email accounts, your social networks,

and the things you love. Try the new AOL.com

today!(http://pr.atwola. com/promoclk/ 100000075x121296 2939x1200825291/

aol?redir= http://www. aol.com/? optin=new- dp

%26icid=aolcom40van ity%26ncid= emlcntaolcom0000 0001)

[Guest guest]

Hi Margaret,

I pray that Gareth gets well quickly. I feel so sorry for him.

Charlyne

Subject: CyndiB

To:

Date: Monday, December 15, 2008, 7:12 PM

<<Margaret how are you holding up through all of this? Are you

staying

well?>>

Hi, Everyone.... Cyndi.... I am doing OK.....I'm not 6 feet under, so life is

good!!! I try to stay upbeat because Gareth is VERY attuned to MY emotions

and he apologizes for being sick or having to go to the doctors, etc. It's

not that I am angry at him, but upset about whatever is going on and he *thinks*

I am mad. Those are the 2 emotions that people have as far as he is

concerned ---- happy or mad. So, if I don't go around with a smile on my face

and

upbeat, then he will think I am mad at him and that gets him down. Nothing

like walking into the doc's office and having your sick kid tell the doc " Mom

mad, I sick. "

Take care, Everyone.

Margaret

************ **Make your life easier with all your friends, email, and

favorite sites in one place. Try it now.

(http://www.aol. com/?optin= new-dp & icid= aolcom40vanity & ncid=emlcntaolco

m00000010)

[Guest guest]

Margaret, is non verbal so I really don't know if he feels anything

coming on. He had so many seizures until we finally got him on the right meds.

Trileptal is another seizure med. It  controls his grand mal seizures

completely, but then he started having drop seizures so we started the valproic

acid with it. Now, thankfully, he is controlled. I hope you find the right

dosage to get Gareth completely controlled too. Seizures are so scary. I didn't

sleep well for a couple of years. had several during his sleep.Terry

[Guest guest]

  yes , Sara is right.  the nystatin I have is an oral tablet for yeast

overgrowth in the intestine. rx by his dr.   the charcoal given 30 min prior to

nys. dosage will help absord the yeast die off & prevent some of the unpleasant

side effects such as stomach ache, diarrhea, constipation, etc...

  I am still working on getting the charcoal in him - havenot had any success

yet.  should I give the nystatin anyway? 

  DeDee

________________________________

To:

Sent: Sunday, February 1, 2009 2:01:22 PM

Subject: Re: DeDee

Nystatin is given INTERNALLY for things like yest or fungus. Like in the

mouth or intestinal tract.

> Hi, Everyone.... .DeDee... .you have me totally confused!!! I sure hope

> you

> aren't trying to give the kid the Nystantin internally?! ?!? Isn't it a

> cream/ointment? What's with the charcoal? I must be really out of the loop

> medically!!!

>

> Take care, Everyone.

> Margaret

>

>

> ************ **Great Deals on Dell Laptops. Starting at $499.

> (

> http://pr.atwola. com/promoclk/ 100000075x121788 3258x1201191827/ aol?redir=

http://www. dell.com/ co

>

> ntent/products/ features. aspx/laptops_ great_deals & #63;c=us% 26cs=19%26l=

en%26s=d

> hs%26 & #126;ck= anavml)

>

>

[Guest guest]

i would give the nystatin anyway and try using a probiotic. That will help

aswell - maybe not AS WELL but will help.

> yes , Sara is right. the nystatin I have is an oral tablet for yeast

> overgrowth in the intestine. rx by his dr. the charcoal given 30 min prior

> to nys. dosage will help absord the yeast die off & prevent some of the

> unpleasant side effects such as stomach ache, diarrhea, constipation, etc...

> I am still working on getting the charcoal in him - havenot had any

> success yet. should I give the nystatin anyway?

> DeDee

>

> ________________________________

> From: Sara Cohen <pastmidvale@... <pastmidvale%40gmail.com>>

> To:

> Sent: Sunday, February 1, 2009 2:01:22 PM

> Subject: Re: DeDee

>

> Nystatin is given INTERNALLY for things like yest or fungus. Like in the

> mouth or intestinal tract.

>

> On Sun, Feb 1, 2009 at 2:44 PM, <mfroof@... <mfroof%40aol.com>> wrote:

>

> > Hi, Everyone.... .DeDee... .you have me totally confused!!! I sure hope

> > you

> > aren't trying to give the kid the Nystantin internally?! ?!? Isn't it a

> > cream/ointment? What's with the charcoal? I must be really out of the

> loop

> > medically!!!

> >

> > Take care, Everyone.

> > Margaret

> >

> >

> > ************ **Great Deals on Dell Laptops. Starting at $499.

> > (

> > http://pr.atwola. com/promoclk/ 100000075x121788 3258x1201191827/

> aol?redir= http://www. dell.com/ co

> >

> > ntent/products/ features. aspx/laptops_ great_deals & #63;c=us%

> 26cs=19%26l= en%26s=d

> > hs%26 & #126;ck= anavml)

> >

> >

[Guest guest]

DeDee,

Did you know the Nystatin comes in liquid form?

This is how I give this to .

" Should I give the nystatin anyway? "

I would see why not, check the OAT (Organic Acid Test).

You have Capricin? This should also help too, along with the

probiotics. I know,this has a bitter taste.

Yeast & bacterial toxins-which are known to worsen:

Behavior

Aggression

Hyperactivity

Energy Levels

If some of the markings are high on the OAT test, do try to give it.

Irma

>

> � yes , Sara is right.� the nystatin I have�is an oral tablet for

yeast overgrowth in the intestine. rx by his dr. � the charcoal given

30 min prior to nys. dosage will help absord the yeast die off &

prevent some of the unpleasant side effects such as stomach ache,

diarrhea, constipation, etc...

> � I am still working on getting the charcoal in him - havenot had

any success yet.� should I give the nystatin anyway?�

> � DeDee

[Guest guest]

> I really appreciate all the input......this is one area I know

nothing about. Thank you, everyone.

>

> Take care,

> Margaret

Margaret, this is me, do not know nothing when it comes to the med route.

You know me, I have enter the biomedical intervention galaxy where I

leave the meds as a last resort. Totally brainless in this arena.

Did want to send prayers for solutions with these challenges you have

encountered and wish Gareth some hugs and comfort his way.

Hugs across the miles that y'all get over this hurdle and something

gets resolved.

Irma,20,DS/ASD

[Guest guest]

Hi Margaret,

We had the same situation a few years ago when Zeb was using the nebulizer. I

had gads of tubes that I ended up throwing away. My insurance paid $800.00 for

that prescription. I told them that I didn't need that much but they insisted

that's what the dr wrote. I even called the dr. It was a mess. What a waste.

Charlyne

Subject: Sara

To:

Date: Monday, April 13, 2009, 9:58 PM

Hi, Everyone.... Sara....talk about a fiasco!!! Yes, the nebulizer is

small and Gareth used it tonight before SO, but it didn't do any better than his

regular inhaler. Also, Walmart gave me a bag of *stuff* and I took it

home only to find 7 boxes of tiny tubes filled with liquid. He only needs one

tube at a time and MAYBE will use 2-3 tubes a week. Each box has 25 tubes

X 7........... what the Heck am I to do with them all?!?!? They will be

expired before he uses them all!!! I know if I take them back to Walmart

tomorrow, they will say there is nothing they can do about it because I walked

away with them. Talk about Walmart taking advantage of a situation.

Take care, Everyone.

Margaret

************ **The Average US Credit Score is 692. See Yours in Just 2 Easy

Steps!

(http://pr.atwola. com/promoclk/ 100126575x122162 1489x1201450100/ aol?redir=

http:%2F% 2Fwww.freecredit report.com% 2Fpm%2Fdefault. aspx%3Fsc% 3D668072% 26h

mpgID%3D62%26bcd% 3DAprilAvgfooter NO62)

[Guest guest]

Hi. Margaret I wont be home today, we are going to a BBQ!!!Will be home tomorrow

I expect after 1pm I have a Drs apt in the am. Laurie

To:

From: mfroof@...

Date: Sat, 16 May 2009 21:03:21 -0400

Subject: Becky/Leah/Laurie

<<He's taking concerta, abilify, and sertraline (which is generic zoloft).

Psychiatrist keeps saying that it's spring/weather change, hormones, but I

am

not getting help from anyone on how to stop this?>>

Hi, Everyone....Becky....sorry, but this sounds like a 'cop out' to me. Any

psych that Gareth has had in the past, would always recommend a change in

meds because they do stop working. Find another psych.

Laurie....got your number and will try hard to call tomorrow.

Leah..... you and I need a vacation together!!! Prayers coming for Ashton

and you.

Life.........We had 's graduation today. Hard to believe he is

graduating from college......still looking for a job, though. I don't feel THAT

old, though!!! Gareth...........he did well. He's very proud of his

brother. The meds seem to be working for his ears and there was no blood and

puss in them today. I forgot to tell you all that he also had pills stolen

from one of the hotel rooms in PR, too. I never have had that happened in

the past. Unfortunately, since we were hotel hopping around the island, I

didn't realize it till Weds night, after the ER visit. They took his

Dilantin and Lyrica (which is a controlled substance). We were able to get more

Dilantin because Walmart was there, but the 2 last Lyrica pills had to be

stretched to a pill a day instead of 2 pills daily. I always count pills

and take only what I need so it's easy to see they were stolen. I was told

by the Walmart pharmacist that I could go across the street to the 'doctor

in the supermarket' to get more Lyrica......we choose not to go that

route!!!

Take care, Everyone.

Margaret

**************An Excellent Credit Score is 750. See Yours in Just 2 Easy

Steps!

(http://pr.atwola.com/promoclk/100126575x1222377005x1201454319/aol?redir=http://\

www.freecreditreport.com/pm/default.aspx?sc=668072 & hmpgID=62 & bcd=May

Excfooter51609NO62)

[Guest guest]

Apologies Margaret, you are right everyone is entitle according to what you had

posted.

I did goof here, had forgotten to delete this group list email address.

Did not not mean to post this one, had not realized it until you pointed it out.

This was really not intended for this group list due for several reasons similar

to what you had mentioned.

There is so much involved when it comes to this approach.

Will make sure to re-check my messages when posting.

Irma