HELP!!!

July 1, 2001

On Sun, 1 Jul 2001 23:05:23 EDT wescrubjay@... writes:

.. In February, the psychologist

> said she

> suspected Asperger's Syndrome and suggested we contact the school

> district

> for help. We are still waiting for that help, and are told not to

> expect

> anything before September. Meanwhile, our son is spiralling

> downwards.

************

This makes no sense at all that you have to wait till Sept. What state

are you in? Here in New York if a child is over 3 they have to register

with the school district as a possible special ed. student and then you

would demand an immediate CPSE meeting ( usually held within a week or

so). We also have Long Island ADVOCATES which are free lawyers that work

with you and attend your CPSE and as the chile turns 5 it will be a CSE

meeting. You could be having services in your house already if they

can't find a school placement for the summer. Try and see if they offer

ABA (Applied Bahaviorl Analysis) where you are. It works wonders with

these children. It works using rewards and repetitive trial teachings,

often using a step by step breakdown of the required task that is wanted

to be taught. If your library has " Behavioral Intervention for Young

Children with Autism " edited by Maurice, read it. It explains

so much about ABA.

As far as sanity and siblings - I really can't help you much with that.

My son LJ is 6 years old and its just him and I in the house. I NEVER

get out, unless its with him or when he's in school, I went out a total

of 4 times in 6 years!!!! Its hard, but I am so happy everytime I see

another major gain with LJ.

, I wish you the best, keep us all posted how things work out with

the school and all. We are here for you whenever you need someone.

on Long Island New York

*

He

> has gotten to the point where he is often confused by our words,

> often does

> not hear us, is really bothered by noises, spends a lot of time

> walking on

> his toes, flapping, making up and repeating nonsense words. He is

> very

> impulsive and aggressive, and we are afraid he is going to hurt his

> baby

> sister (7 months old). We went CF about a month ago and GF 10 days

> later.

> About a week into the casein free diet, after a lot of crazy, out of

> control

> behavior, we began to see a few improvements. Now, after a month of

> the

> diet, he is crazier than ever. We are at our wit's end, with

> absolutely no

> support. We can't ask other parents to trade babysitting, because

> we are

> afraid our son will hurt the other kids. We know no babysitters who

> are

> mature enough to handle him, and we have no nearby relatives. We

> REALLY feel

> like we are about to loose any sanity we had, we do not know how

> much longer

> we can remain nurturing and loving to either child (we love our son,

> but he

> is REALLY HARD to be around), and we see no help in sight.

> HELP!!!!!!!!

> What does everybody do for support, to ensure their own sanity, and

> to

> protect younger siblings? (To make things worse, my husband

> apparently has

> Asperger's himself. He never had the aggression or impulsiveness or

> other

> extreme behaviors, but he is having great difficulty adjusting.)

>

> C.

>

July 1, 2001

> HELP!!!! We are new to the world of autism-although our son (now

4.5) has

> never quiet been nuerotypical, we never understood quite what was

going on.

> What does everybody do for support, to ensure their own sanity, and

to

> protect younger siblings? (To make things worse, my husband

apparently has

> Asperger's himself. He never had the aggression or impulsiveness

or other

> extreme behaviors, but he is having great difficulty adjusting.)

>

> C.

HI MARY. I agree with . The school should do it earlier

that Sept. and there is no sense in waiting. I don't know all of what

advised to do with the school, and how it works there, but I

am sure it is the right thing to do. In addition to that, there is

one thing that is the same all over States: FEAT and Autism Society

of America (ASA). Sorry I don't have those numbers at hand because I

am moving and lots of stuff is now packed-I should keep them in my

address book on the computer!!!-They are both on the web, and you can

find the # for your area. I think you can find it also in the phone

book. They will get you started with whatever it is that you will

need and support you, and also show you the path, connect you with

other people that will be able to help you, as well as ABA therapy

informations. I urge you to call those number first. They can help

for sure, also to deal with your school district if that's the case.

For your " sanity " , put some ads in the colleges around there, you

will find lots of students willing to learn and help.FEAT also has

some good resources on that one.

Good luck, Cristina-WA

July 2, 2001

, what state are you in? If California, you need to get a hold of the

Regional Center in your area. They should help you find the help that you

need to get your child evaluated.

If he is still having problems maybe you should look at the foods he is

eating and see if you need to take another food like corn or soy out. You

might also think about using an enzyme like www.kirkmanlabs.com carries.

EnZymAid. Get some Pepcid AC tablets (not the chewable) Also maybe the

Colostrum Gold that Kirkman carries. These help Evan. And if it is another

food that is bothering him then it might also help.

If he is aggressive toward his baby sister you might put a lock in his or

her room or an alarm that will go off if he goes in or out. Evan never even

took an interest in his baby brother other than just look at him and walk

off when he first came home. But then Evan has rarely been aggressive.

Usually just trying to get someone to let him go for a walk and I doubt that

kind of attitude is what you are talking about.

I wish that I could be of help to you but I am sure someone else will have

more ideas.

Betty

----- Original Message -----

> HELP!!!! We are new to the world of autism-although our son (now 4.5) has

> never quiet been nuerotypical, we never understood quite what was going

on.

> When he became increasingly impulsive and aggressive, we took him to a

child

> psychologist, desperate for help. In February, the psychologist said she

> suspected Asperger's Syndrome and suggested we contact the school district

> for help. We are still waiting for that help, and are told not to expect

> anything before September. Meanwhile, our son is spiralling downwards.

He

> has gotten to the point where he is often confused by our words, often

does

> not hear us, is really bothered by noises, spends a lot of time walking on

> his toes, flapping, making up and repeating nonsense words. He is very

> impulsive and aggressive, and we are afraid he is going to hurt his baby

> sister (7 months old). We went CF about a month ago and GF 10 days later.

> About a week into the casein free diet, after a lot of crazy, out of

control

> behavior, we began to see a few improvements. Now, after a month of the

> diet, he is crazier than ever. We are at our wit's end, with absolutely

no

> support. We can't ask other parents to trade babysitting, because we are

> afraid our son will hurt the other kids. We know no babysitters who are

> mature enough to handle him, and we have no nearby relatives. We REALLY

feel

> like we are about to loose any sanity we had, we do not know how much

longer

> we can remain nurturing and loving to either child (we love our son, but

he

> is REALLY HARD to be around), and we see no help in sight. HELP!!!!!!!!

> What does everybody do for support, to ensure their own sanity, and to

> protect younger siblings? (To make things worse, my husband apparently

has

> Asperger's himself. He never had the aggression or impulsiveness or other

> extreme behaviors, but he is having great difficulty adjusting.)

>

> C.

July 2, 2001

For support, you have some right here on this list. If you will post

your state, I'm sure listmates can help you locate services & support

closer to home.

It's not surprising that your chld is doing worse during the first

month on the gfcf diet. That's almost " normal " as he is probably

experiencing withdrawal. Enzymes with meals help some kiddos through

this phase and beyond.

If possible, find a DAN doctor in your area (check the list at

www.autism.com) to learn what else might be going on - other food

problems, yeast, heavy metals, etc.

There is a lot to learn, but also a lot that can be done to help your

child (and save your sanity). Unravelling the Mystery of Autism &

PDD is a great book to help understand the biological process that is

occuring. (Also has some good recipes and a list of references for

more info.)

N

July 2, 2001

I just also want to add that you have to gather any energy you have left and

be an advocate for your son. You have to ask for what you want which for

starters would be something like an IEP(Individual Education Plan--could be

called something else where you live). Put your requests in writing, like a

request for this meeting on how the school will help your son and they are

obligated to make a meeting with you w/n a short amount of time. Then you

need to ask for certain things--individual speech therapy, ABA (like

was talking about), occupational therapy or sensory integration therapy. I

know you ahve a lot on your plate.....maybe if you let us know where you are

someone could help you out with your area. need to meet other moms in your

area going thru the same things(Trust me there out there unfortunately) as

they can help you navigate the ropes with the people in your district. The

thing I learned the hard way though was if you dont ask for something, no

one telss and no one gives. You have to get your game face on (sad i knowe)

and begin requesting and demanding if you have to. Putting things in

writing helps. Once you get soem of this taken care of, you will begin to

feel a little better.

I agrree as well with finding college students who would be willing to come

help and learn or help with the baby. It is always easier when you are not

alone even if they are just holding the baby for a few minutes.

Do you know of any good DAN doctors in your area----can find a list of these

at www.gfcfdiet.com I think.

Hang in there. turn to us. Locate others in your community. If you find

where they give speech therapy or occupational therapy in your area should

be able to locate other mothers who were once at the point you are and who

canm advise you. Take care, and hang in there,

Re: HELP!!!

>

> On Sun, 1 Jul 2001 23:05:23 EDT wescrubjay@... writes:

> . In February, the psychologist

> > said she

> > suspected Asperger's Syndrome and suggested we contact the school

> > district

> > for help. We are still waiting for that help, and are told not to

> > expect

> > anything before September. Meanwhile, our son is spiralling

> > downwards.

> ************

> This makes no sense at all that you have to wait till Sept. What state

> are you in? Here in New York if a child is over 3 they have to register

> with the school district as a possible special ed. student and then you

> would demand an immediate CPSE meeting ( usually held within a week or

> so). We also have Long Island ADVOCATES which are free lawyers that work

> with you and attend your CPSE and as the chile turns 5 it will be a CSE

> meeting. You could be having services in your house already if they

> can't find a school placement for the summer. Try and see if they offer

> ABA (Applied Bahaviorl Analysis) where you are. It works wonders with

> these children. It works using rewards and repetitive trial teachings,

> often using a step by step breakdown of the required task that is wanted

> to be taught. If your library has " Behavioral Intervention for Young

> Children with Autism " edited by Maurice, read it. It explains

> so much about ABA.

>

> As far as sanity and siblings - I really can't help you much with that.

> My son LJ is 6 years old and its just him and I in the house. I NEVER

> get out, unless its with him or when he's in school, I went out a total

> of 4 times in 6 years!!!! Its hard, but I am so happy everytime I see

> another major gain with LJ.

>

> , I wish you the best, keep us all posted how things work out with

> the school and all. We are here for you whenever you need someone.

>

> on Long Island New York

> *

>

> He

> > has gotten to the point where he is often confused by our words,

> > often does

> > not hear us, is really bothered by noises, spends a lot of time

> > walking on

> > his toes, flapping, making up and repeating nonsense words. He is

> > very

> > impulsive and aggressive, and we are afraid he is going to hurt his

> > baby

> > sister (7 months old). We went CF about a month ago and GF 10 days

> > later.

> > About a week into the casein free diet, after a lot of crazy, out of

> > control

> > behavior, we began to see a few improvements. Now, after a month of

> > the

> > diet, he is crazier than ever. We are at our wit's end, with

> > absolutely no

> > support. We can't ask other parents to trade babysitting, because

> > we are

> > afraid our son will hurt the other kids. We know no babysitters who

> > are

> > mature enough to handle him, and we have no nearby relatives. We

> > REALLY feel

> > like we are about to loose any sanity we had, we do not know how

> > much longer

> > we can remain nurturing and loving to either child (we love our son,

> > but he

> > is REALLY HARD to be around), and we see no help in sight.

> > HELP!!!!!!!!

> > What does everybody do for support, to ensure their own sanity, and

> > to

> > protect younger siblings? (To make things worse, my husband

> > apparently has

> > Asperger's himself. He never had the aggression or impulsiveness or

> > other

> > extreme behaviors, but he is having great difficulty adjusting.)

> >

> > C.

> >

July 2, 2001

,

There should be a behavioral specialist or two at your local children's

hospital. If they can't get you in right away, see if they can send you

some information. Also, read " Facing Autism " , " Unraveling the Mysteries of

Autism and PDD " and " The Child with Special Needs " . That last one should be

a great help for behavioral issues.

Hope this helps,

Pat in Ohio

July 2, 2001

I " m thinking maybe contact your local FEAT...a support group for parent's of

autistic children. They may be able to provide you with people who do

respite care of even a parent childcare sharing group or something. Where

do you live? Hang in there with the diet....he may really respond once he

is through the withdrawal stage.

Hugs,H, mommy to 3 1/2 yrs, PDD; and 2 yrs, NT

June 23, 2003

Hi Debbie,

There shouldn't be much thyroid tissue left to remove so I'm not sure a

thyroidectomy is the answer here. The immune system defect that causes Graves'

disease typically worsens after RAI ablation because the immune system is

stimulated to respond to the assault of RAI.

You can help your immune system heal by avoiding environmental triggers such

as excess dietary iodine, aspartame, estrogens, and stress. A nutrient-rich

diet and an avoidance of foods that harm the immune system (sugar, saturated

fats, processed foods) will also help. Avoiding allergens or keeping them in

control is also essential. There are supplements known as immunomodulators that

also help the immune system heal. These are plant sterols and sterolins.

Once your immune system has calmed down, antibody production will diminish or

at least not be as dramatic. This will help in stabilizing your thyroid

hormone levels. Best to you, Elaine

June 24, 2003

> Can anyone tell me if it ever gets better? I had RAI 19 months ago

> and I feel horrible...my levels will not stablize. My TSH will go

> from 1.25 to 5.27 in four months without a dosage change

Hi Debbie.

What medication are you taking and how high a dose? My apologies if I

don't have the whole picture; my yahoo groups have been bouncing and I

think I'm finally settled.

I'm not too familiar with thyroid hormone since I didn't have RAI but

that, along with what Elaine suggested, could be key in your feeling

better. A lot of doctors will just keep increasing your dose of

synthroid or T4 (so say you're at maximum now - are you, or near there?)

and when the maximum dose doesn't work they'll attribute the patient's

not doing well to anything and everything but thyroid. Instead, they

should also be testing FreeT3 and offering T3 hormone in the form of

cytomel or Armour.

Take care, Fay

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April 26, 2008

To Whom It May Concern:My name is Doug . I am writing on behalf of my father. He has been very ill and continues to get progressively worse and lives in the Denver area. He has been through every test imaginable(2 spinal taps, 2 surgeries to extract lymph nodes, 3 MRI's, 1 PET Scan to mention a few and has been treated for TB most recently as a precaution) and seen every specialist available to him and they cannot diagnose him definitively so he can find some sort of treatment. One minute they say he has Lymphoma, then they say it could be T.B. and the next it is Neuro Sarcoidosis. The two dangerous biopsy procedures that were done were a Media Stynum procedure to remove Lymph tissue from below his rib cage and a more intrusive procedure of opening up his chest and removing tissue from between his

heart and lungs. They have not made a definitive diagnosis after almost two months. We are scheduled to see his Neurologist again next Tuesday(which I feel is too late) with hopes once again that they will have a plan of action to treat what I think they are leaning toward in the Neuro Sarcoidosis. I implore you. Please!!! I am desperately trying to help my father who is suffering and has been going through this for months now. I feel that we must have the BEST doctors in order to figure this out and have more than lost confidence in his current doctors. His P. E.T.scan showed masses below his chest, in his spinal column and lesions in his brain. As I understand it, these "masses" are explained as inflammation of the spinal cord from the Thoracic spine up through the Cervical Spine and into the lower part of the brain.I found you on the web and hope you can stear me in the right direction for my father and dealing with his Neuro

Sarcoidosis. PLEASE HELP!!! I'M DESPERATE to help my father who is 69 years old and a great person. My folks are overwhelmed and don't know where to turn for answers. Their doctors seem baffled meanwhile the progession of his symptoms are worsening even though he is being medicated with Prednazone and Plaquenil, not to mention 5 T.B. medications and multiple pain killers. He is having more occurrences of memory loss, stabbing pain in his left side, paralysis in his left side such that he can hardly walk, and was walking on his own just a few weeks ago.Who or Where is the best Facility in the USA to recieve treatment for NeuroSarcoidosis? I thank you sincerely for giving this email the attention it is due.>God Bless, Doug

dougjacksonguitar@...

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

April 26, 2008

To Whom It May Concern:My name is Doug . I am writing on behalf of my father. He has been very ill and continues to get progressively worse and lives in the Denver area. He has been through every test imaginable(2 spinal taps, 2 surgeries to extract lymph nodes, 3 MRI's, 1 PET Scan to mention a few and has been treated for TB most recently as a precaution) and seen every specialist available to him and they cannot diagnose him definitively so he can find some sort of treatment. One minute they say he has Lymphoma, then they say it could be T.B. and the next it is Neuro Sarcoidosis. The two dangerous biopsy procedures that were done were a Media Stynum procedure to remove Lymph tissue from below his rib cage and a more intrusive procedure of opening up his chest and removing tissue from between his

heart and lungs. They have not made a definitive diagnosis after almost two months. We are scheduled to see his Neurologist again next Tuesday(which I feel is too late) with hopes once again that they will have a plan of action to treat what I think they are leaning toward in the Neuro Sarcoidosis. I implore you. Please!!! I am desperately trying to help my father who is suffering and has been going through this for months now. I feel that we must have the BEST doctors in order to figure this out and have more than lost confidence in his current doctors. His P. E.T.scan showed masses below his chest, in his spinal column and lesions in his brain. As I understand it, these "masses" are explained as inflammation of the spinal cord from the Thoracic spine up through the Cervical Spine and into the lower part of the brain.I found you on the web and hope you can stear me in the right direction for my father and dealing with his Neuro

Sarcoidosis. PLEASE HELP!!! I'M DESPERATE to help my father who is 69 years old and a great person. My folks are overwhelmed and don't know where to turn for answers. Their doctors seem baffled meanwhile the progession of his symptoms are worsening even though he is being medicated with Prednazone and Plaquenil, not to mention 5 T.B. medications and multiple pain killers. He is having more occurrences of memory loss, stabbing pain in his left side, paralysis in his left side such that he can hardly walk, and was walking on his own just a few weeks ago.Who or Where is the best Facility in the USA to recieve treatment for NeuroSarcoidosis? I thank you sincerely for giving this email the attention it is due.>God Bless, Doug

dougjacksonguitar@...

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

April 26, 2008

Doug, I am very sorry to hear your Father is so ill, you said he lives in Denver, what clinics have you been to? Nat. Jewish is there and their great when dealing with the lungs, but it sounds like in your Father it's more related

to Neuro, of which I myself had trouble getting dx at Nat. Jewish. Have you tried University hospital, they have some good neurologist. I am waiting to get started on a new drug. I have many of the same symptoms you are describing,

pain, of which I found Lyrecia very very helpful, took away about 95% of the pain. I have trouble walking, weakness, etc. My tests were all neg and I was dx on symptoms, mental confusion, numbness and loss of use of L. side.

Tell me more about where your Father has been treated, he needs more then Prednisone and Plaquanil. There are many here with even more information for you, so hang in there, getting the pain under control is big, so

talk about that with the doctors, there are drugs that can help. You have come to the right place, but many of us ourselves are very sick and may take a day or two for you to hear back from others. But we know what you are going through.

To Whom It May Concern:My name is Doug . I am writing on behalf of my father. He has been very ill and continues to get progressively worse and lives in the Denver area. He has been through every test imaginable(2 spinal taps, 2 surgeries to extract lymph nodes, 3 MRI's, 1 PET Scan to mention a few and has been treated for TB most recently as a precaution) and seen every specialist available to him and they cannot diagnose him definitively so he can find some sort of treatment. One minute they say he has Lymphoma, then they say it could be T.B. and the next it is Neuro Sarcoidosis. The two dangerous biopsy procedures that were done were a Media Stynum procedure to remove Lymph tissue from below his rib cage and a more intrusive procedure of opening up his chest and removing tissue from between his

heart and lungs. They have not made a definitive diagnosis after almost two months. We are scheduled to see his Neurologist again next Tuesday(which I feel is too late) with hopes once again that they will have a plan of action to treat what I think they are leaning toward in the Neuro Sarcoidosis. I implore you. Please!!! I am desperately trying to help my father who is suffering and has been going through this for months now. I feel that we must have the BEST doctors in order to figure this out and have more than lost confidence in his current doctors. His P. E.T.scan showed masses below his chest, in his spinal column and lesions in his brain. As I understand it, these " masses " are explained as inflammation of the spinal cord from the Thoracic spine up through the Cervical Spine and into the lower part of the brain.

I found you on the web and hope you can stear me in the right direction for my father and dealing with his Neuro

Sarcoidosis. PLEASE HELP!!! I'M DESPERATE to help my father who is 69 years old and a great person. My folks are overwhelmed and don't know where to turn for answers. Their doctors seem baffled meanwhile the progession of his symptoms are worsening even though he is being medicated with Prednazone and Plaquenil, not to mention 5 T.B. medications and multiple pain killers. He is having more occurrences of memory loss, stabbing pain in his left side, paralysis in his left side such that he can hardly walk, and was walking on his own just a few weeks ago.

Who or Where is the best Facility in the USA to recieve treatment for NeuroSarcoidosis? I thank you sincerely for giving this email the attention it is due.>God Bless, Doug

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

-- Marla BramerIndependent Beauty Consultant Kay mbramer@...www.marykay.com/mbramer

April 26, 2008