HELP

[Guest guest]

Tina,

When we applied right to Medicaid for home health, we were denied. I found

out about a separate program that they had for home health and it was

automatically provided through the program. Try asking about this sort of

thing.

Dawn-KS, mommy to Dakota, 7, aka BJ, 4, (eosinophilic

gastroenteritis, Nissen, asthma, reflux), and mommy to Mackenzie Marie

andrya born 11/20/99

Re: [eosinophilic gastroenteritis] Help

> From: Ssrams@...

>

> Hello guys this is Tina mom to Alyssa and well we are still having

problems.

> the vomiting is almost none exisit. but now there are other things going

> on. I still can't get her rate up above 45 then she throws up, so I leave

it

> at 45 the thing is she is not getting enough calories she has no energy,

and

> she drinks a lot of water over a gallon a day, still can't get the rate up

> even with out water, her lips are cracked, and they had to do some work up

> stuff on her and her pee pee is so dilutited nothing showed up and her

> calsium level is too high and her acid is too high in her blood I still

don't

> know what that means but the docter is concerned and said this is going to

> reguire more testing she is still losing weight not alot but I thought she

> had gained but she is at 30 3/4 oz she doesn't even look like the same

child.

> then medicaid denied home health care so ALyssa is home bound and now

what?

> Didn't some one talk about this before? I can't remember what was said

but

> someething about it being law if a child is tube fed there is a number of

> hours a month required? Please help I feel scared now. have you guys

felt

> so scared that you didn't have any control? thanks Tina Mom to Alyssa

>

> >

[Guest guest]

Tina,

When we applied right to Medicaid for home health, we were denied. I found

out about a separate program that they had for home health and it was

automatically provided through the program. Try asking about this sort of

thing.

Dawn-KS, mommy to Dakota, 7, aka BJ, 4, (eosinophilic

gastroenteritis, Nissen, asthma, reflux), and mommy to Mackenzie Marie

andrya born 11/20/99

Re: [eosinophilic gastroenteritis] Help

> From: Ssrams@...

>

> Hello guys this is Tina mom to Alyssa and well we are still having

problems.

> the vomiting is almost none exisit. but now there are other things going

> on. I still can't get her rate up above 45 then she throws up, so I leave

it

> at 45 the thing is she is not getting enough calories she has no energy,

and

> she drinks a lot of water over a gallon a day, still can't get the rate up

> even with out water, her lips are cracked, and they had to do some work up

> stuff on her and her pee pee is so dilutited nothing showed up and her

> calsium level is too high and her acid is too high in her blood I still

don't

> know what that means but the docter is concerned and said this is going to

> reguire more testing she is still losing weight not alot but I thought she

> had gained but she is at 30 3/4 oz she doesn't even look like the same

child.

> then medicaid denied home health care so ALyssa is home bound and now

what?

> Didn't some one talk about this before? I can't remember what was said

but

> someething about it being law if a child is tube fed there is a number of

> hours a month required? Please help I feel scared now. have you guys

felt

> so scared that you didn't have any control? thanks Tina Mom to Alyssa

>

> >

[Guest guest]

I would try Medicaid and then the welfare office (here it is called SRS but

it is different for every state). What state are you in?

Dawn-KS, mommy to Dakota, 7, aka BJ, 4, (eosinophilic

gastroenteritis, Nissen, asthma, reflux), and mommy to Mackenzie Marie

andrya born 11/20/99

Re: [eosinophilic gastroenteritis] Help

> From: Ssrams@...

>

> In a message dated 12/1/99 2:29:15 PM Central Standard Time,

> jones5@... writes:

>

> << Try asking about this sort of

> thing. >>

> Who do we ask? Medicaid? Tina

>

> >

[Guest guest]

Don't want to sound weird or anything, but I would be very careful about

giving a gallon of water a day to drink. Children, esp. ones with health

problems, can actually get water poisoning from drinking too much water.

Full-size adults can get this when drinking about 2 gallons of water a day.

I would suggest gatorade, koolaid, pedialyte, juice (if tolerated), anything

that has some minerals and electrolytes.

[Guest guest]

Tina,

I WAS ON NEOCATE for almost a year. there is an older formula. There is

also the formula we are all on now Elecare, which is the U.S.-made

equivalent of Neocate, cheaper and in some situations, proven easier on the

GI tract. I'm not sure what the doctor is thinking, but there are plenty of

formulas out there your child can live on forever.

If she is fine off food, but needs prednisone from going on it for just a

few weeks, I would think you have your answer. Have you gotten a second

opinion, or asked the doctor for referral to someone whom the DOCTOR trusts?

steph.

[eosinophilic gastroenteritis] Help

>

>

>Hi this is Tina mom to Alyssa soem thing has been wrong with my email

>so i have been sending emails but nothing has went through. SO a lot

>of things have been going on here, First all the symptoms are back

>Alyssa was able to eat rice and rice products she was on for about 3

>wks and then all the green slimy poop started then the vomiting. At

>first the ped wanted to see if her body would fight off the reaction

>but it didn't. So the GI took her back off every thing but formula

>and she is back on prednisone 20mg this is making her crazy. So for

>the next 2 mon. no food then we are to retry her, but my thinking is

>if she has been off food for 6 mon, and she had food for 3wks what is

>2 mons going to do? I asked if we could wait 1 yr and then try I was

>told no that the formula neocate infant is not going to provide her

>with all she needs for that long, butis it fair to give food to her

>and then take it away? this is so hard, For the millionth time the

>GI said I have no school age children with this I have nver treated

>achild over the age of 6 I thought to begin with it was 2 then 3 and

>now it is 6, he now wants to get her in a study at the Jewish INST.

>of Allergies in Colorado Does any one know about this place? what to

>expect?should we do this? I mean to me the anwer is to keep her off

>food and just let her be tube fed, Does any one have any ideas? what

>do you guys do when things like this happen, Thanks Tina mom to Alyssa

>

>

>------------------------------------------------------------------------

>DON'T HATE YOUR RATE!

>Get a NextCard Visa, in 30 seconds! Get rates as low as

>0.0% Intro or 9.9% Fixed APR and no hidden fees.

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>

__________________________________________________

[Guest guest]

Help

>

> Hi this is Tina Alyssa and I have had a rough night, Alyssa's pump stoped

> working at 11:00 last night and my husband has gone to get a new one 45min

> away, so Alyssa hasn't had anything in 12hr, I found her eating the dogs

> food out of his bowl and she said see buttins food doesn't make me sick

> can't he share with me, This almost broke my heart, I have a 3 yr who

wnats

> to share food with the dog what am i supose to say to her? You know I was

> almost tempted to say go for it, She likes the stuff , Of course that

> sounds crazy but you know I am so tired of saying no, to every thing, gee

> she is only alittle girl so now i have to watch out or the poor dog isn't

> going to have any food, the last time we caught her eating his doggie

> treats she had areaction soI am just waiting to see she is on prednisone

so

> please give me advice Tina

>

[Guest guest]

I never used a form, I just typed out the information I had on each person

and submitted that to him. I think that is what most of us have done.

Raleigh NC

MGB 2-9-00

start 276

now 222

[Guest guest]

I never used a form, I just typed out the information I had on each person

and submitted that to him. I think that is what most of us have done.

Raleigh NC

MGB 2-9-00

start 276

now 222

[Guest guest]

Ok my friends, I have waited along time and saved everything I needed for

this day, then last week my email was wiped out and I lost my bible of

vitamins and goodies.

Someone was kind enough to e-mail me the supplement list it just came out

like code, sorry. Am I panicking yes, will the doc give us a list of

things to get before surgery? Did anyone call the drug Doctor before hand to

get any info. Here they call you the day before personally to give

instructions. Guess what I slept 7 hours last night gosh it was heaven..Love

you all..Genz get your butt ingear and come on June1st be my littermate. We

can go pick on Flo

Trisha Lanman

Littermate June 1, 2000

yippee

Las Vegas NV

[Guest guest]

If the baby is congested, it helps to elevate the sleeping surface. For our family, dd sleeps on my arm or pillow instead of just next to me. A pillow under the crib mattress or tuna cans under the crib legs are other elevating suggestions I've heard.

As for cold medicine, go for the form that treats the fewest number of symptoms--so, if dd doesn't have cough don't use the cough suppressant--this is something our first pediatrician really purported. Better to give more than one formula for different symptoms than a single formula that covers symptoms you don't even have/notice.

Amy Lynnmother to 1-25-98 and 2-10-00Want great toys? Non-violent, educational, fun! check out www.discoverytoysinc.com, or e-mail me privately for a catalog

[Guest guest]

My heart really goes out to the younger folks who have this disease

because how you look, fitting in, and " image " is so important these

days with the younger generations. Its too much pressure to look

good!

Perhaps a good place to start would be with a good primer w/ lots of

recommendations like Dr. Nase's Book. His website is found under

Bookmarks on this site. Also, if you haven't been to a dermatologist

yet, you should try to go at least for a couple of vists. Sometimes

they are helpful, sometimes you have see more than one to find someone

who will listen and accomodate, but you should have an initial

diagnosis.

Hope this helps. GT

i'm not sure what to do next. i'm mostly overwhelmed with all of the

information out there, so many questions and not sure where to

start. i appreciate your time and look forward to hearing from

someone. sincerely,

lisa

[Guest guest]

Dear friends, my good friend E-mailed me from Montana last night and told me

that she has cancer of the tongue. I realize that this has nothing to do

with pancreatitis but I need your help. If anyone knows how to search any

information on tongue cancer and the best hospital to go to for the surgery

and treatment my friend and I would really be grateful. She lives in a

remote part of Montana and is planning to go to the surgeon there close to

home. I want her to go the best hospital and the best doctors who treat this

type of cancer of the tongue. Thank you for any help you can give me since I

am not very good with searching on the computer. In fact I am rather

clueless. Please keep her in your prayers. Her name is Gail. Thanks so

much. Shirley

[Guest guest]

In a message dated 8/14/02 6:08:46 PM Central Daylight Time,

shirlf3542@... writes:

> shirlf3542@...shirlf3542@...

I would check M. D. in Houston Texas. They are a " teaching

hospital " and therefore involved in many studies and clinical testing. My

father was part the Luperon clinical testing 15 years ago (he went there for

prostrate cancer and M.D. found liver cancer the size of a cantelope

that the local hospital didn't even detect). He is now 78 and still going

strong and has no sign of cancer. The great part is that the hospital does a

full scan every six months...just to be sure. He helps pastors and

missionaries by helping build/remodel their homes - mostly drywall! Good

luck - and I will keep her in my prayers,

Gail West, Indiana

[Guest guest]

I went on-line and found there are doctors that specialize in Tongue Cancer.

I just used Google and " tongue cancer " treatment hospital

Thought I would share a couple of links of success stories - positive

reinforcement and all that:

http://www.guycroft.clara.net/cancer/mouth.htm

http://lowellgeneral.cancersource.com/NewsFeatures/InspirationalStories/detail

..cfm?DiseaseID=1&ContentID=25173

And here is one just for oral cancer:

http://www.cancerlinksusa.com/oral/

Hope this helps,

Gail West, Indiana

[Guest guest]

C

>From: shirlf3542@...

>Reply-To: pancreatitis

>To: pancreatitis

>Subject: Re: Help

>Date: Wed, 14 Aug 2002 19:08:15 EDT

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>

>Dear friends, my good friend E-mailed me from Montana last night and told

>me

>that she has cancer of the tongue. I realize that this has nothing to do

>with pancreatitis but I need your help. If anyone knows how to search any

>information on tongue cancer and the best hospital to go to for the surgery

>and treatment my friend and I would really be grateful. She lives in a

>remote part of Montana and is planning to go to the surgeon there close to

>home. I want her to go the best hospital and the best doctors who treat

>this

>type of cancer of the tongue. Thank you for any help you can give me since

>I

>am not very good with searching on the computer. In fact I am rather

>clueless. Please keep her in your prayers. Her name is Gail. Thanks so

>much. Shirley

>

>

>

[Guest guest]

In a message dated 8/14/02 7:43:34 PM Eastern Daylight Time,

gwest1955@... writes:

>

> > shirlf3542@...shirlf3542@...

>

> I would check M. D. in Houston Texas. They are a " teaching

> hospital " and therefore involved in many studies and clinical testing. My

> father was part the Luperon clinical testing 15 years ago (he went there

> for

> prostrate cancer and M.D. found liver cancer the size of a

> cantelope

> that the local hospital didn't even detect). He is now 78 and still going

> strong and has no sign of cancer. The great part is that the hospital does

> a

> full scan every six months...just to be sure. He helps pastors and

> missionaries by helping build/remodel their homes - mostly drywall! Good

> luck - and I will keep her in my prayers,

>

> Gail West, Indiana

>

Dear Gail, thank you so much. I will forward your information on to my

friend in Montana. I really appreciate you taking the time for her. Thanks

so much again. Shirley

[Guest guest]

In a message dated 8/14/02 8:00:18 PM Eastern Daylight Time,

gwest1955@... writes:

>

> I went on-line and found there are doctors that specialize in Tongue

> Cancer.

> I just used Google and " tongue cancer " treatment hospital

>

> Thought I would share a couple of links of success stories - positive

> reinforcement and all that:

>

>

Thanks again Gail, you are great. Shirley

[Guest guest]

In a message dated 8/14/02 8:02:41 PM Eastern Daylight Time,

shannontuten@... writes:

> >

> Check out this site:

> http://www.tonguecancer.com/

>

>

>

> Tute

>

>

Dear thank you also. You guys are the best friends anyone could ever

want. THANKS. Shirley

[Guest guest]

Welcome to the group Kim. We have all been in your position before. Unfortunatly you dont get much time for a breakdown, so therefore you just need to make time. Not trying to be funny but it is something that we have done. You have to get yourself together before you can help your child. Thats just my opinion however I have heard many other parents say that to. Know that you are not alone. My daughter is Abby, she is now 6. We got her into early intervention at age 2, made all the differance in the world. What school district do you live in? There are lots of differant therapy options out there. Most on the list have done them or are still doing them. You just have to find out what best works for you. Just remember that although autism is a huge part of your life you have to make sure that you dont let it consume you. It is very easy to do. Remember that your son is only 2, he has plenty of time to catch up. I have seen parents haul their child from one therapy to the next and they seem to forget that the child is still just that "a child". We recently had the opportunity to be a host family for a young lady that was here for the Junior Olympics. She is a 20 year old adult with Autism. She says that alot of Autistic children dont have the opportunity to be a child. While the parents have the best interest at heart they have stripped their child of their childhood years. I hope that you get the needed information that you need here. Once again welcome.

Pennie

Abby's Mom

[Guest guest]

Hi Kim, welcome to the group. Where are you located at?

We are currently going to Pfeiffer and have been pleased with the results. My little one is 3.5. If you would like to email me privately I would be happy to cover my experience with them. smazza@...

That's great your going to the Hope program, I have heard good things about it.

Welcome to the group.

- Sandi

help

Hello all.I am a new member and have a recently diagnosed 2 year old ("Autism"). Our family is devastated. Has anyone out there ever heard of the "Awakennutrition.com" website or used their PCA-rx do it yourself at home without a doctor chelation products? We are thinking of this option for our son.We started PLAY 6 weeks ago, but are not seeing great results. Entering HOPE ABA Center in September for 3 month ABA schooling and are hopeful that will work out well. Speech at Lepak is wonderful, but still looking for competant OT and PT;s, would love suggestions.We also are looking at Pfeifer Clinic and working with Pathways. Any info on either would be helpful to us.Also, when can I pencil in that nervous breakdown I so desperately need? Are there any others out there that feel the same? What is your outlet? When and how do you find time for yourselves?I need help.Thank you, Kim McMillanSupport Everyday Miracles by shopping online at IGIVE.COM, where a portion of every purchase is donated to this support network. Proceeds received will be used for a variety of functions, such as educational activities, therapy, famiy outings, etc. http://www.igive.com/EDM

[Guest guest]

Yes, welcome, Kim. I got your address and will send you a newsletter

for this month-- in it, as Penny describes, is a wonderful article

written by her house-guest, a high functioning autistic adult with many

words of wisdom.

You are to be commended for getting an early diagnosis for your son;

early intervention is key! And while there is a lot to be said for

letting a child be a child, children with autism really need a lot

of " in-your-face " , at least in the beginning. Not to sound cruel, but

children with autism learn differently and need the intensity. When my

son was first diagnosed, he would have been perfectly content to sit

all day and watch the same video over and over if we had let him.

We are currently done with a lot of the intensive treatments and are

beginning to really enjoy his childhood...I have fun with him all day

long now.

You will definitely get the intensity at the HOPE center; I'm glad you

are involved with that. is fantastic, she was our ABA consultant

for 9 months and our son made huge progress (he is now 4).

We don't do PCA, but I know several people on-line do, and can give you

feedback. We take our son to Pfeiffer and I highly recommend this

program; it is very natural and relatively unobtrusive with less side

effects than the typical chelation programs. We have had some excellent

speech therapists and OTs at Beaumont (covered by our insurance) and I

highly recommend that facility as well.

I assume since you're researching the biomedical interventions, you are

also aware of the GFCF diet? if not, check out www.gfcfdiet.com; it's

the " bible " for the diet.

It sounds like you are too busy researching ways to help your child to

have a breakdown, but if you'd like to schedule some time this Monday

or Tuesday from 7-9, please join us at one of our group meetings. We

meet in Ferndale and Romulus on Monday and at Novi on Tuesday- the

perfect opportunity to cry, share, learn new information and get

support from other parents who have " been there/done that " .

I know you didn't intend to be part of this group (who did?!), but

welcome to it anyways..you will get a lot of support here!

Expect a miracle!

help

>

>

>

>

> Hello all.

>

>

>

> I am a new member and have a recently diagnosed 2 year old

> ( " Autism " ). Our

>

> family is devastated.

>

>

>

> Has anyone out there ever heard of the

> " Awakennutrition.com " website or used

>

> their PCA-rx do it yourself at home without a doctor chelation

> products? We

>

> are thinking of this option for our son.

>

>

>

> We started PLAY 6 weeks ago, but are not seeing great results.

> Entering HOPE

>

> ABA Center in September for 3 month ABA schooling and are hopeful

> that will

>

> work out well. Speech at Lepak is wonderful, but still looking

> for competant

>

> OT and PT;s, would love suggestions.

>

>

>

> We also are looking at Pfeifer Clinic and working with Pathways.

> Any info on

>

> either would be helpful to us.

>

>

>

> Also, when can I pencil in that nervous breakdown I so desperately

> need? Are

>

> there any others out there that feel the same? What is your

> outlet? When

>

> and how do you find time for yourselves?

>

>

>

> I need help.

>

>

>

> Thank you, Kim McMillan

>

>

>

>

>

>

>

>

>

>

> Yahoo! Groups

> Sponsor

>

>

>

>

>

>

>

>

>

>

src= " http://us.a1.yimg.com/us.yimg.com/a/sl/sleepangel/sleep_300x250.gif

" alt= " " width= " 300 " height= " 250 " border= " 0 " >http://us.adserver.yahoo.com/l?

M=259395.3614674.4902533.1261774/D=egroupmail/S=:HM/A=1524963/rand=13135

3002 " >

>

>

> Support Everyday Miracles by shopping online at IGIVE.COM, where a

> portion of every purchase is donated to this support network.

> Proceeds received will be used for a variety of functions, such as

> educational activities, therapy, famiy outings, etc.

> http://www.igive.com/EDM

>

>

>

[Guest guest]

Hi ,

Where is Pfeiffer located?

Thanks,

Angelia

---- Original Message ----

From: sharlan@...

To: EverydayMiraclesAutism

Subject: Re: help

Date: Thu, 07 Aug 2003 21:45:29 -0500

>

>

>

>

>Yes, welcome, Kim. I got your address and will send you a newsletter

>

>for this month-- in it, as Penny describes, is a wonderful article

>

>written by her house-guest, a high functioning autistic adult with

>many

>words of wisdom.

>You are to be commended for getting an early diagnosis for your son;

>

>early intervention is key! And while there is a lot to be said for

>

>letting a child be a child, children with autism really need a lot

>

>of " in-your-face " , at least in the beginning. Not to sound

>cruel, but

>children with autism learn differently and need the intensity. When

>my

>son was first diagnosed, he would have been perfectly content to sit

>

>all day and watch the same video over and over if we had let him.

>

>We are currently done with a lot of the intensive treatments and are

>

>beginning to really enjoy his childhood...I have fun with him all day

>

>long now.

>You will definitely get the intensity at the HOPE center; I'm glad

>you

>are involved with that. is fantastic, she was our ABA

>consultant

>for 9 months and our son made huge progress (he is now 4).

>We don't do PCA, but I know several people on-line do, and can give

>you

>feedback. We take our son to Pfeiffer and I highly recommend this

>

>program; it is very natural and relatively unobtrusive with less side

>

>effects than the typical chelation programs. We have had some

>excellent

>speech therapists and OTs at Beaumont (covered by our insurance) and

>I

>highly recommend that facility as well.

>I assume since you're researching the biomedical interventions, you

>are

>also aware of the GFCF diet? if not, check out www.gfcfdiet.com; it's

>

>the " bible " for the diet.

>It sounds like you are too busy researching ways to help your child

>to

>have a breakdown, but if you'd like to schedule some time this Monday

>

>or Tuesday from 7-9, please join us at one of our group meetings. We

>

>meet in Ferndale and Romulus on Monday and at Novi on Tuesday- the

>

>perfect opportunity to cry, share, learn new information and get

>support from other parents who have " been there/done that " .

>

>I know you didn't intend to be part of this group (who did?!), but

>

>welcome to it anyways..you will get a lot of support here!

>

>

>

>

>Expect a miracle!

>

> help

>

>>

>>

>>

>>

>> Hello all.

>>

>>

>>

>> I am a new member and have a recently diagnosed 2 year old

>> ( " Autism " ).  Our

>>

>> family is devastated. 

>>

>>

>>

>> Has anyone out there ever heard of the

>> " Awakennutrition.com " website or used

>>

>> their PCA-rx do it yourself at home without a doctor chelation

>

>> products?  We

>>

>> are thinking of this option for our son.

>>

>>

>>

>> We started PLAY 6 weeks ago, but are not seeing great

>results. 

>> Entering HOPE

>>

>> ABA Center in September for 3 month ABA schooling and are

>hopeful

>> that will

>>

>> work out well.  Speech at Lepak is wonderful, but still

>looking

>> for competant

>>

>> OT and PT;s, would love suggestions.

>>

>>

>>

>> We also are looking at Pfeifer Clinic and working with

>Pathways. 

>> Any info on

>>

>> either would be helpful to us.

>>

>>

>>

>> Also, when can I pencil in that nervous breakdown I so

>desperately

>> need?  Are

>>

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[Guest guest]

Hi ,Where is Pfeiffer located?

It's in Warrenville, IL-- a suburb of Chicago. You have to physically go out there for the first comprehensive evaluation, but follow ups can be done locally and by phone.

[Guest guest]

what is Girls empowered? I have never heard of it before.

Pennie

Abby's Mom

[Guest guest]

Marisa is in a PPI class in Royal Oak and the thing that drives her

nuts is transitions and I don't know what ideas to give the teachers.

She is very happy to go to school, she is verbal but when they tell her

to do something and she doesn't want to she screams. I have a follow

up with Dr. Solomon on the 16th but if anyone has an idea really would

appreciate it.

Thanks

- Marisa's mom