Advice needed

[Guest guest]

I Use Usana also. I feel it's too bad they chose to market via MLM,

I wish they wouldn't. But it is a great product. You don't have to

get involved witht he MLM, you can just be a retail customer.

Virginia

> In a message dated 4/24/03 9:35:10 AM Eastern Daylight Time,

> pdurant@c... writes:

>

>

> > I feel pretty

> > sure that our doc is not just looking out for himself in this as

we have

> > been his patients for 18 years and only when we asked about

nutritional

> > supplements following Tim's cancer diagnosis did he tell us

about the

> > Usana products and the hyperimmune egg powder.

>

> I am sure that what you are using is a good product. We just

don't know if

> there is a better one/ comparable but less expensive etc because

your doctor

> is tied in with this company. Hopefully he did his research and

is offering

> both quality and a means to earn extra income at the same time.

> Good luck.

>

>

>

>

[Guest guest]

Ursula:

That's a good point about the MMR and t-cell function. had some t-cell

deficits when we were told not to get any live vaccines. I assumed it was

because of the IgG deficit, but maybe it was the t-cell issue that made them so

adamant not to get live vaccines.

She did great with the varicella we got before Dx, even mounted a very nice

antibody response! I'm actually a big fan of vaccines -- I love the fact they

can give you a shot and if you respond to it you're pretty much safe from that

disease. I'm glad has had all her shots now, but then again, she never

had any bad reactions to any so we're lucky there.

For the newcomers I thought I'd mention that the IVIG (gamma globulin

replacement) is not used for those with selective IgA deficiency. There is very

little to no IgA in the IVIG, and anyway IgA is meant to protect the mucous

membranes, not the blood, and there is currently no way to put IgA back into the

mucous membranes. So while those with selective IgA def unfortunately have no

treatment available, remember that those getting IVIG are also not getting their

IgA replaced, and most or all are also IgA def.

Hope that's not confusing!

(mom to Kate, born 9/19/02, dairy intolerant; and , age 4, dairy

intolerant -- currently has polysaccharide antibody def, previously had

transient IgG, IgA, t-cell & other defs)

[Guest guest]

I'm brand new here, but I think most doctors give the DTaP which is NOT the live

form of the vaccine. My daughter also has severe epilepsy and we too are behind

on immunizations for the same reasons. She has had her DTaP shot up until now

(we just found out that she has an IgA deficiency) but we never did the MMR and

what what I'm hearing on here, it's a good thing.

Good Luck in whatever you decide, I'm anxious to see others responses to you.

Kathy

advice needed

Hello everyone.

I am looking for advice.

My seven year old son is being investigated for immune problems. We

are being seen by an immunologist. So far we know that he is quite

deficient in IgG and has been so for the past two years however his

IgG levels are continuing to drop. He had antibody titers done and he

had no antibodies to diptheria, and several others were below the

norm. These were all things he has been vacinated against. He had a

pneumococcal vaccine done 1 month ago and titers just done for this

but the results are not back yet. My son also has severe epilepsy- we

have found that when he is on prophylactic antobiotics his seizures

are lessened but when sick they are severe. We opted not to give him

his 6 year vaccinations as there is strong evidence of the pertussis

worsening seizures. Our immuno has recommended that we have Mike

vaccinated with DPT. Is this safe in light of the possible immune

deficiency and does anyone have experience with this vaccine in kids

with neurological problems? Are there other things we should be

looking for in terms of testing? Any thoughts or advice is appreciated.

Faye

[Guest guest]

My son is also 7 years old, he was diagnosed at age 4 with Di

Syndrome, Hypogammaglobulinemia and he also has epilepsy, asthma, chronic

encopresis, and he has a very severe learning disability. I think that as

far as the immunizations are concerned, each immunologist or pediatrician

makes a decision regarding giving them to immunocompromised patients

depending on their severity of their immune disorder and also on what

disorder it is in general. For Kody, once we had a diagnosis, all

vaccinations were halted. Period. Also here is an interesting tidbit for you

Kody's neurologist told us that there is medical evidence to suggest that

receiving IVIG can help seizures. I believe this to be true in Kody's case

because his depakote is helping him remain seizure free, however, before

IVIG this was not the case at all. Since that time, I have read articles on

the internet that also talk about the use of IVIG for seizure disorders.

Since you are new to this whole thing, I'll explain that IVIG is

gammaglobulin given at intervals (usually every 3 weeks) by IV to replace

IgG antibodies, this is a major treatment for immune disorders and a life

saver for Kody for sure. Also, one reason why we haven't done vaccinations

since, is because the IVIG has some coverage for these things since the

people that donated the blood for the IVIG had their immunizations. I think

that I would hold off on the immunizations until you have more difinitive

answers and feel comfortable about making that decision, it won't hurt Mike

to wait, and you will want to be sure. Please feel free to email me anytime!

Diane, Mom to Kody

Please feel free to visit my website for parents of children with multiple

special needs :

www.geocities.com/schmidtzoo/SNAK.index.html

-- advice needed

Hello everyone.

I am looking for advice.

My seven year old son is being investigated for immune problems. We

are being seen by an immunologist. So far we know that he is quite

deficient in IgG and has been so for the past two years however his

IgG levels are continuing to drop. He had antibody titers done and he

had no antibodies to diptheria, and several others were below the

norm. These were all things he has been vacinated against. He had a

pneumococcal vaccine done 1 month ago and titers just done for this

but the results are not back yet. My son also has severe epilepsy- we

have found that when he is on prophylactic antobiotics his seizures

are lessened but when sick they are severe. We opted not to give him

his 6 year vaccinations as there is strong evidence of the pertussis

worsening seizures. Our immuno has recommended that we have Mike

vaccinated with DPT. Is this safe in light of the possible immune

deficiency and does anyone have experience with this vaccine in kids

with neurological problems? Are there other things we should be

looking for in terms of testing? Any thoughts or advice is appreciated.

Faye

[Guest guest]

Oh I forgot to mention, sometimes they use immunization response to help

determine antibody response. The immunologist may want your son to get the

DPT so that 6 weeks later (or so) he can do a blood test to see if your son

responded to the vaccine or not. This will help him get a clear picture of

how your son's immune system works.

Diane, Mom to Kody

Please feel free to visit my website for parents of children with multiple

special needs :

www.geocities.com/schmidtzoo/SNAK.index.html

-- advice needed

Hello everyone.

I am looking for advice.

My seven year old son is being investigated for immune problems. We

are being seen by an immunologist. So far we know that he is quite

deficient in IgG and has been so for the past two years however his

IgG levels are continuing to drop. He had antibody titers done and he

had no antibodies to diptheria, and several others were below the

norm. These were all things he has been vacinated against. He had a

pneumococcal vaccine done 1 month ago and titers just done for this

but the results are not back yet. My son also has severe epilepsy- we

have found that when he is on prophylactic antobiotics his seizures

are lessened but when sick they are severe. We opted not to give him

his 6 year vaccinations as there is strong evidence of the pertussis

worsening seizures. Our immuno has recommended that we have Mike

vaccinated with DPT. Is this safe in light of the possible immune

deficiency and does anyone have experience with this vaccine in kids

with neurological problems? Are there other things we should be

looking for in terms of testing? Any thoughts or advice is appreciated.

Faye

[Guest guest]

I want to mention that the opinion of Macey's immunologists at Duke (Dr. Myers

and Dr. Harville) is that only those

patients with a documented T-cell dysfunction or deficiency should refrain from

live vaccines such as the MMR. Macey

has had the MMR on schedule as well as twice for testing purposes. She has had

no problems with it but she has no

T-cell problem either. She did show a reduced response to the Mumps part of the

MMR titer testing but a second shot

helped increase that. She gets Varicella antibodies from IVIG. That's another

thing. IVIG patients on a regular

schedule which does not allow for the half life to expire should be covered for

all vaccinations by passive immunity.

The only ones I worry about are those patients who take a break during the

summer from infusions or who have trials off

scheduled for every so often to check function. During those down periods they

could lose the passive immunity and

since they weren't immunized they would be vulnerable.

Just my thoughts anyway.

Ursula Holleman

mom to (10 yrs old) and Macey (8 yr. old with CVID, Diabetes Insipidus,

colonic inertia)

http://members.cox.net/maceyh

Immune Deficiency Foundation's 2003 National Conference

http://www.execinc.com/idf/

Immune Deficiency Foundation - Peer Contact for GA

http://www.primaryimmune.org

/

[Guest guest]

Ursala,

Rebekah has no documented T-cell problems. They've check twice. However,

she had HORRID responses to her vaccines all four times she was vaccinated

in the first year. The last time, it took over 6 months for her to recover.

In her case, they recommend never having another vaccine since her response

to DPT and MMR and all of the rest was so bad. That's been our rather

negative experience with vaccines. I think vaccines are wonderful and save

lives, but I am terrified of any of my kids getting a vaccine.

Pam

wife to (16 years)

mother to , 9, Hannah, 7, Rebekah, 3, and Leah, 2

Re: advice needed

Ursula:

That's a good point about the MMR and t-cell function. had some t-cell

deficits when we were told not to get any live vaccines. I assumed it was

because of the IgG deficit, but maybe it was the t-cell issue that made them

so

adamant not to get live vaccines.

She did great with the varicella we got before Dx, even mounted a very nice

antibody response! I'm actually a big fan of vaccines -- I love the fact

they

can give you a shot and if you respond to it you're pretty much safe from

that

disease. I'm glad has had all her shots now, but then again, she never

had any bad reactions to any so we're lucky there.

For the newcomers I thought I'd mention that the IVIG (gamma globulin

replacement) is not used for those with selective IgA deficiency. There is

very

little to no IgA in the IVIG, and anyway IgA is meant to protect the mucous

membranes, not the blood, and there is currently no way to put IgA back into

the

mucous membranes. So while those with selective IgA def unfortunately have

no

treatment available, remember that those getting IVIG are also not getting

their

IgA replaced, and most or all are also IgA def.

Hope that's not confusing!

(mom to Kate, born 9/19/02, dairy intolerant; and , age 4, dairy

intolerant -- currently has polysaccharide antibody def, previously had

transient IgG, IgA, t-cell & other defs)

[Guest guest]

, Thank you so much for your prayers, they really mean alot to us

right now.

[Guest guest]

Thank you so much Ursula! Any info on this would be much

appreciated. It just seems that everytime we see a doctor their

first words are " This is rare " or " We hardly ever see this " The last

place I expected this was the dentist. Was Macey more prone to having

infections in her gums? We have had some cysts,but not infections.

Brennen can not tolerate antibiotics so if he gets an infection we

need to do IM or a PICC line, and I am not ready to head down the

PICC line infection route again. I just feel like we have opened a

whole new can of worms. Thanks so much again for the info.

[Guest guest]

Hi,

My son is not as severely affected by immune problems in his mouth, but the

immunologist still wrote a prescription for a mouth rinse b/c Sam has braces

now and his gums are very inflamed. It is called Chlorhexidine Gluconate. I

doubt it would help with the teeth that are affected but it's purpose is to help

prevent and stop gum infections and my geuss is that stopping gum infections

might prevent some of the tooth damage.

Good luck and we will be thinking abut you!

Anne R - IgA def., polysacharide antibody def; mother of Sam - 7, IgA def.,

IgG subclass def., AND Ash - congenital myopathy, possibly mitochondrial

disease

[Guest guest]

Oh, , I am so sorry you received this upsetting news. You seem very sad

and upset and I have no information for you, just know that we are here to

support you and lend an ear and send prayers your way.

(mom to Kate, born 9/19/02, dairy intolerant; and , age 4-1/2,

GERD, dairy intolerant -- currently has polysaccharide antibody def, previously

had transient IgG, IgA, t-cell & other defs)

[Guest guest]

,

I just went to your website and saw the beautiful pictures of Jasmine and her

activation day. I would not be concerned that she has not yet reacted to the

sound. To me - it's probably a good thing that she didn't cry or try to pull it

off as it obviously didn't frighten her.

Now is the time to work with her as you would a new born baby. Introduce her to

sound. Sit with her facing you so that she can see that when you move your lips

to talk to her something happens when your lips move. Easy picture books would

seem appropriate. Apple, Car, Dog, Cat etc. Reading to a child is an excellent

way to teach them to listen and speak.

Do you have early intervention for her? They should be involved with her

education and rehab. As the implant is turned up, she will very likely be more

reactive but the best way to get her to react is to hold her and show her how

much you love her. I would try whispering into her ear that you love her and

demonstrate it with a hug or a kiss and do it repeatedly. This is actually how

I taught my hearing children.

She is really beautiful. Please keep us involved with her progress. I'd like

to add your website to our links - with your permission.

Please know that I am not the parent of a hearing impaired child but I am a Mom

and a Grandmother. I have dealt with disabilities in both generations and

learned quickly that love is the best possible teacher.

Alice

Hi everyone,

My 17 month old daughter Jasmine was activated today. I was a bit

disappointed there wasn't more of a reaction from her, even though

we were told that this could happen. I realize this is only the

first day and that her processor is turned on low to start out with.

[Guest guest]

Hi ,

LOVED your daughter's web site--just beautiful! Regarding the BTE

falling off Jazzie's ear--I have heard from a number of parents that

toupee tape works great. Unfortunately, the Sally's here in town

does not have any for us to try so I'll have to order some on-line

or go to another town. What I am using, which is working great with

Kiele's Auria (the Advanced Bionics BTE) is molefoam (like Dr

Scholl's moleskin but with padding). I cut a strip and put it on

the battery and cut a strip and put it on the BTE itself and the

Auria stays on great! Sounds crazy but it works. A few adults use

it and that's where I got the idea--I here that it makes the BTE

real comfortable. Take care and good luck with everything.

Deb in WA

mom to Kiele, 6 yo, activated 21 Oct 03, and Sky, 6 months, hearing

> Hi everyone,

>

> My 17 month old daughter Jasmine was activated today. I was a bit

> disappointed there wasn't more of a reaction from her, even though

> we were told that this could happen. I realize this is only the

> first day and that her processor is turned on low to start out

with.

> If there are any parents or CI recipients out there who

experienced

> the same thing, I would love to hear from you.

> Also, her ear piece keeps falling off, because her ear is so

small.

> Any advice/suggestions would be appreciated.

>

>

> Happy mom to Jasmine Mei-Chun

> Activated today!

> Nucleus 24.

> http://geocities.com/sandrapeffly

[Guest guest]

Sam,

Whine away! That's what we're here for. First of all, to my knowledge,

being overweight is in itself a disability. Depends on how overweight

you are, and I'm not asking you to tell me what you weigh, but if it

limits your abilities that should be a big factor. You can have all the

education that a person can achieve and still be limited. What grounds

are you getting assistance? Physical? Emotional? I know for a fact

that depression is a disability and you can actually get permanent

disability on depression alone. Unfortunately the way the system works

is that they make it so darn difficult to get assistance, and they have

to quantify things that are " unquantifiable " . (is that a word?)

Lol....anyway...you have to learn to play by their rules. If I were

you, I'd go to my doctor and say, " Hey...I can't work yet, these are the

reasons why. This is what the assistance person says. What can I do to

get them to understand my limitations? " If you don't like his/her

response, find another doctor. If you are leaning on the physical

aspects, go to a specialist, like a rheumatologist or physiologist. If

it is emotional, see a psychologist or psychiatrist. The assistance

person wants to see a doctor say that you will never ever work again,

period. The doctor doesn't want to write that, since they want to get

away from anything that is definitive since it leads to lawsuits. In

our files section we have something called ssi bluebook. Might want to

look at that. Keep us updated and good luck. Venting is healthy....go

for it all you can!!!

Hugs,

advice needed

This is a bit of a whine but I would like some advice.

I am feeling very frustrated. I have Diabetes type II, High blood

pressure, High cholesterol, Hypothyroidism, Restless Legs Syndrome, and

Depression. I diabetes, blood pressure and theroid disease are under

good control. The Restless legs and probably depressin are causing

insomnia but I sleep fairly well with Oxazepam and a couple of tylenol.

though sometimes it takes a couple of hours to get to sleep. I graduated

last Junel with a degree in social work (at the age of 58 and the same

weekend as my 40 year high school reunion) and the only work experience

I have is a very small contact doing needs assessments and support. My

other efforts to find more hours were unsuccessful. this and the death

by suicide of one of my first cousins put my depression in full force. I

have been living (if you can call it that) on social assistance with a

medical excuse not to have to look for work. I just completed the first

phase of a program at the university to help students transition form

school to work.

My problem is first I changed doctors as I felt I was not getting good

care. She had never done a physical, was always disorganized and rushing

off. The new doctor did all the test indluding a physical and ECG and

stress test all OK -except for being dreadfully over weight and out of

shape. She figures my only barrier to work is that I need to check my

blood pressure and blood sugars.

The worker at assitance says I have no barrier to work as I have a lot

of education.

I want to work but don't feel its a realistic expectation given the

shortage of jobs in this area, the fact that I have to compete with

young energetic, sharp young people. My appearance fat and grey, I am

59 in August. I just want to be considered for a category that says yes

I have barriers. this would allow me about $100 more per month- I might

get to then eat healthy and havemoney for the bus to look for work. I

would also be able to keep up to $300 of what I might earn should I get

some work-given that its most likely that any work would start off part

time.

Sorry about the length of this but can anyone help me find a way to

advocate for myself-even what words or methods? Sam

~~~~ *** ~~~ *** ~~~ *** ~~~~

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This group is not intended to diagnose or treat illnesses. No one on

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*** ~~~ *** ~~~ *** ~~~~ When nothing is sure, everything is possible.

--- Margaret Drabble

~~~~ *** ~~~ *** ~~~ *** ~~~~

[Guest guest]

,

Thanks so much for understanding and being supportive. My assistance has

been based on the depression. I am just changing meds back again and I

alredy feel somewhat better just being off of the Zoloft. I had beenon

Prozac before and will restart again. there are some dead lines coming

up for my assitance status and for the employement programthat I am in

and I am coming to realize that I am panicking not knwong which is the

'right way to go. I need to trust and let go. It is wonderful to be

validated and it wilmake it easier for me to speak up for myself-thanks

again. Sam

>~~~~ *** ~~~ *** ~~~ *** ~~~~

> The Being Sick Community

>

>

>Message Archives-/messages

>

>Chat:- Scheduled Chats at

>/chat

>

>Bookmarks:-

>Add a website URL you have found useful.

>/links

>

>Personal Complaints or problems:-

>Please contact a moderator

>email: -owner

>

>Subscription Details:-

>1) Individual email - means that every email sent to the list you

>receive.

>2) Daily Digest - sends you 25 messages in one single email for you to

>browse. This is an excellent option if you receive alot of email.

>3) Web only/No mail - means that you can pop into groups at your

>convenience and receive no email.

>

>To modify your subscription settings please visit:-

>/join

>

>To subscribe or unsubscribe please email:-

>-subscribe

>-unsubscribe

>

>This group is not intended to diagnose or treat illnesses. No one on

>this group is qualified to diagnose medical conditions. If you feel you

>need medical attention, seek the advice of a qualified physician. ~~~~

>*** ~~~ *** ~~~ *** ~~~~ When nothing is sure, everything is possible.

>

>--- Margaret Drabble

>

>~~~~ *** ~~~ *** ~~~ *** ~~~~

>

>

[Guest guest]

Sam,

I'm glad I could help! The reason I know that depression is even an

accepted disability for permanent state disability (SSI) is that my

relatives have had many auto immune diseases that because of this

qualification or this doctor have had to fall back on depression to get

their SSI. If you have significant depression or other mental

illnesses, there is no reason for them to cut off support to you. NONE.

If they give you a hard time, let me know. I have a contact at the ACLU

(American Civil Liberties Union) that may be able to help you.

(depending on how hard nosed you want to get) But...I'm sure you'll be

fine. I believe even med changes and adverse reactions may be covered

under disabilities as well...then again, depends on where you live.

Please keep in touch. I'm positive everything will be straightened out,

but if they don't......don't panic. The group is behind you for

emotional support, and we have some pretty nice connections too

*wink wink*

Hugs,

Re: advice needed

,

Thanks so much for understanding and being supportive. My assistance has

been based on the depression. I am just changing meds back again and I

alredy feel somewhat better just being off of the Zoloft. I had beenon

Prozac before and will restart again. there are some dead lines coming

up for my assitance status and for the employement programthat I am in

and I am coming to realize that I am panicking not knwong which is the

'right way to go. I need to trust and let go. It is wonderful to be

validated and it wilmake it easier for me to speak up for myself-thanks

again. Sam

>~~~~ *** ~~~ *** ~~~ *** ~~~~

> The Being Sick Community

>

>

>Message Archives-/messages

>

>Chat:- Scheduled Chats at

>/chat

>

>Bookmarks:-

>Add a website URL you have found useful.

>/links

>

>Personal Complaints or problems:-

>Please contact a moderator

>email: -owner

>

>Subscription Details:-

>1) Individual email - means that every email sent to the list you

>receive.

>2) Daily Digest - sends you 25 messages in one single email for you to

>browse. This is an excellent option if you receive alot of email.

>3) Web only/No mail - means that you can pop into groups at your

>convenience and receive no email.

>

>To modify your subscription settings please visit:-

>/join

>

>To subscribe or unsubscribe please email:-

>-subscribe

>-unsubscribe

>

>This group is not intended to diagnose or treat illnesses. No one on

>this group is qualified to diagnose medical conditions. If you feel

>you need medical attention, seek the advice of a qualified physician.

>~~~~

>*** ~~~ *** ~~~ *** ~~~~ When nothing is sure, everything is possible.

>

>--- Margaret Drabble

>

>~~~~ *** ~~~ *** ~~~ *** ~~~~

>

>

[Guest guest]

hey shelly someone in this group will help you i saw it the other day but

forgot from who...................someone will catch up with you.....good luck

dimples

[Guest guest]

We went through that with the Monopoly a few years back lol, did the same thing to my husband. He still does it with just about everything that my husband is interest in. It drives DH nuts when begs him to play a football video game but then doesn't want to play, just watch and eventually he gets up and leaves altogether. I try to explain that this is not one of his "real" interests therefore he can't maintain any interest in it. It's just something he see's as time with dad. If he convinces to play, will get up and still leave in the middle of the game and DH will get stuck on being afraid he'll grow up to be a "quitter" AHHH!! I can So relate to DH issues this week as we got into it BIG time over his hard a** approach yesterday.

Good luck at the doctor, wish I had some wise advise but I am going through the same thing at the moment!!

-Charlotte

Advice Needed

I just wondered if anyone could give me some advice. We have a second time doctors appointment. The doctor we will visit is the one whom dx his Autism. Remember the dx: Autism Spectrum disorder, Language Disorder with High IQ. We have to travel over an hour away to see this doc and I want to make sure I cover my territory. I am asking anyone for some advice on what to ask doc, concerns etc. I know you all don’t know my son personally but any pointers can help, IM sure many of you have lots more experience with your doctors you all see. Any pointers would be greatly appreciative. Anything about Meds…How to handle him, what to do with our school system. Anything you can think of please!

Devin is 7 nearly 8, 2nd grade and gifted. IM seeing a lot of “there has to be consequences for his actions” from the school and at times at home he can worry the horns off of you. We decided we were going to do a family game. Well, monopoly wasn’t the greatest choice. He bugged my husband to death over and over can we play again? Fixated. I thought my husband was going to blow a fuse. <Here we go again> how do you all handle things as such?

[Guest guest]

Thanks Charlotte, It just helps knowing

someone else is out there going through the same. I just hope the traveling

goes well 2morrow as well. I can very well relate with the hard a** approaches.

The big thing with my hubby he say’s “You have your mother wings

out, tuck them back in” Oh it makes me so angry!!!!!!! lol

Re:

Advice Needed

We went through that with

the Monopoly a few years back lol, did the same thing to my

husband. He still does it with just about everything that my husband is

interest in. It drives DH nuts when begs him to play a football

video game but then doesn't want to play, just watch and eventually he

gets up and leaves altogether. I try to explain that this is not one of

his " real " interests therefore he can't maintain any interest in

it. It's just something he see's as time with dad. If he convinces

to play, will get up and still leave in the middle of the game and

DH will get stuck on being afraid he'll grow up to be a " quitter "

AHHH!! I can So relate to DH issues this week as we got into it BIG time

over his hard a** approach yesterday.

Good luck at the doctor,

wish I had some wise advise but I am going through the same thing at the

moment!!

-Charlotte

Advice Needed

I just

wondered if anyone could give me some advice. We have a second time doctors

appointment. The doctor we will visit is the one whom dx his Autism. Remember

the dx: Autism Spectrum disorder, Language Disorder with High IQ. We have

to travel over an hour away to see this doc and I want to make sure I cover my

territory. I am asking anyone for some advice on what to ask doc, concerns etc.

I know you all don’t know my son personally but any pointers can help, IM

sure many of you have lots more experience with your doctors you all see. Any pointers

would be greatly appreciative. Anything about Meds…How to handle him,

what to do with our school system. Anything you can think of please!

Devin is 7 nearly 8, 2nd

grade and gifted. IM seeing a lot of “there has to be consequences for

his actions” from the school and at times at home he can worry the horns

off of you. We decided we were going to do a family game. Well, monopoly

wasn’t the greatest choice. He bugged my husband to death over and over

can we play again? Fixated. I thought my husband was going to blow a fuse.

<Here we go again> how do you all handle things as such?

[Guest guest]

Oh am I ever lol!

Drives me buggie!! I am online now searching for parenting "tips" for AS to print off so DH can see it in writing......maybe then it will "stick" lol.

We've been battling this for 9 years, almost 10.

Disney was one of the first times I really noticed DH was not getting it. All wanted to do was be at the pool at the condo, or on a park bench drinking a soda. He ran out of a bugs life at top speed screaming and I thought I was going to loose him for sure. All DH kept saying to him was "We spent all this money....drove you to the biggest playground in the world and you don't want to do anything??? He wanted to force him on some things so he would "get over it" and I had to put my foot down!! I've been stomping it ever since!!

Advice Needed

I just wondered if anyone could give me some advice. We have a second time doctors appointment. The doctor we will visit is the one whom dx his Autism. Remember the dx: Autism Spectrum disorder, Language Disorder with High IQ. We have to travel over an hour away to see this doc and I want to make sure I cover my territory. I am asking anyone for some advice on what to ask doc, concerns etc. I know you all don’t know my son personally but any pointers can help, IM sure many of you have lots more experience with your doctors you all see. Any pointers would be greatly appreciative. Anything about Meds…How to handle him, what to do with our school system. Anything you can think of please!

Devin is 7 nearly 8, 2nd grade and gifted. IM seeing a lot of “there has to be consequences for his actions” from the school and at times at home he can worry the horns off of you. We decided we were going to do a family game. Well, monopoly wasn’t the greatest choice. He bugged my husband to death over and over can we play again? Fixated. I thought my husband was going to blow a fuse. <Here we go again> how do you all handle things as such?

[Guest guest]

ARG! If DH told me that I would be have to bleep out more than the word

a**!!!! LOL!

>===== Original Message From " Barry Hitchcock " <bazndeb@...> =====

>Thanks Charlotte, It just helps knowing someone else is out there going

>through the same. I just hope the traveling goes well 2morrow as well. I

>can very well relate with the hard a** approaches. The big thing with my

>hubby he say's " You have your mother wings out, tuck them back in " Oh it

>makes me so angry!!!!!!! lol

>

>

>

> Re: Advice Needed

>

>

>

>We went through that with the Monopoly a few years back lol, did

>the same thing to my husband. He still does it with just about

>everything that my husband is interest in. It drives DH nuts when

>begs him to play a football video game but then doesn't want to

>play, just watch and eventually he gets up and leaves altogether. I try

>to explain that this is not one of his " real " interests therefore he

>can't maintain any interest in it. It's just something he see's as time

>with dad. If he convinces to play, will get up and still

>leave in the middle of the game and DH will get stuck on being afraid

>he'll grow up to be a " quitter " AHHH!! I can So relate to DH issues

>this week as we got into it BIG time over his hard a** approach

>yesterday.

>

>

>

>Good luck at the doctor, wish I had some wise advise but I am going

>through the same thing at the moment!!

>

>-Charlotte

>

> Advice Needed

>

>

>

> I just wondered if anyone could give me some advice. We have a second

>time doctors appointment. The doctor we will visit is the one whom dx

>his Autism. Remember the dx: Autism Spectrum disorder, Language Disorder

>with High IQ. We have to travel over an hour away to see this doc and I

>want to make sure I cover my territory. I am asking anyone for some

>advice on what to ask doc, concerns etc. I know you all don't know my

>son personally but any pointers can help, IM sure many of you have lots

>more experience with your doctors you all see. Any pointers would be

>greatly appreciative. Anything about Meds.How to handle him, what to do

>with our school system. Anything you can think of please!

>

>Devin is 7 nearly 8, 2nd grade and gifted. IM seeing a lot of " there has

>to be consequences for his actions " from the school and at times at home

>he can worry the horns off of you. We decided we were going to do a

>family game. Well, monopoly wasn't the greatest choice. He bugged my

>husband to death over and over can we play again? Fixated. I thought my

>husband was going to blow a fuse. <Here we go again> how do you all

>handle things as such?

>

>

>

>

> _____

>

>

>

[Guest guest]

Advice Needed

Devin is 7 nearly 8, 2nd

grade and gifted. IM seeing a lot of “there has to be consequences for

his actions” from the school and at times at home he can worry the horns

off of you. We decided we were going to do a family game. Well, monopoly

wasn’t the greatest choice. He bugged my husband to death over and over

can we play again? Fixated. I thought my husband was going to blow a fuse.

<Here we go again> how do you all handle things as such?

In our house we would tell our son ahead of time that we would play one

game tonight, or for 1 hour or whatever and then we can play another day this

week. When he asks can we play again, say we can play -----night unless something

comes up unexpected. You might say “tonight was fun, let’s play

another night soon”. If he asks again the same night tell him, if you

keep asking we will not play tomorrow night. Gail

[Guest guest]

Hey Charlotte,

I just wanted to let you know how our doctor’s

appointment went. We were set straight about the positive reinforcements. The doc

said “if you are using this at home and the school is not, then it disrupts

every thing that you already done, everyone has to be on the same page”.

My hubby almost hit the roof when I told him what happened when I picked Devin

up from school today, to go to our doctor’s appointment. When I went to

check Devin out of his class, he was sitting at the teacher’s desk with

her standing over him. I knocked on the door; the teacher took Devin by the

shoulder and was escorting him to the door to where I was. When she opened the

door, we were exchanging a few words, small talk, why Devin hasn’t been

at school, we are all sick, I have an eye swollen and red and we were

discussing it. Meanwhile, Devin being Devin, he wondered back into the class

room to say bye to everyone. To my surprise….The teacher yelled “Didn’t

you hear what I said”? I was amazed, shocked and by this point was

walking away. I was in misbelieve why she done this in front of me. What’s

the deal here? It took me a little while to realize what she had done when I

got to the car, I realized what had happened.

We get to the car where my husband was and

I told him what had happened. He was upset. But he does the same. We both loose

our cool with Devin, him more so than me, we have yelled but mainly out of

frustration. We were discussing this on the way to our appointment, for we had

an hour’s drive ahead of us. I began taking notes; I wanted to make our

time with the doctor a good one. IM looking for answers. We are only human, we

loose our cool, become frustrated and we don’t know how to deal with a

seven year old. (Sad) I’m too lenient and he is too harsh. We began to

discuss other things. How my son acts differently when IM in the house, when it’s

just him and my husband he’s an angel, so my husband says. Which leads

him to believe he can control most things if I can be more aggressive? I then

explain look, maybe he associates or has became familiar with a “visual”

picture of you when you have become highly frustrated maybe that’s why he

does things differently when it’s just the two of you. Regardless how or

why he controls himself more so with you I don’t think he can control

some of the things he does. Believe me, if you ask him to stop doing something

and he doesn’t, it’s not because he doesn’t want to stop.

This is a medical condition. We took this to the doctor, he didn’t say

much about it but I did bring up a lot of good points according to the doctor.

The only point the doc made about this particular subject is that they do act a

certain way depending on what they can get away with, with each person. IM like

….great….I bet I hear this one later on. My husband asked a lot of

questions and told the doctor we are learning and working on ourselves and

making this work between us.

The other thing the doctor was saying he

is more worried about the school; I took in documents from the school to show

him what was going on. Devin not finishing his work not because he doesn’t

know how to do it but it’s like he is rebelling. The doctor said, “They

are brainwashing him to fail”. Lovely…huh? Like how am I sup post

to fix this one? We talked about his teacher and it was like, “this is

the type of teacher you need” yes, it’s the type we need but I can

pick and choose. The doctor was very upset with the school and so am I but its

not easy dealing with a public school system. I am afraid of the outcome for my

own son if I do push the issues. Don’t get me wrong, I will push…have

been for awhile. Lastly he said, “Give them time to do something, but don’t

hesitate on hiring a lawyer.”

It’s great advice but no handbook

given. J IM going out to buy some books soon…any suggestions?? We

need like …understanding why he does this or that, then how to handle it.

Please and thank ya,

Deb’s in Bama

Re:

Advice Needed

Oh am I ever lol!

Drives me buggie!! I

am online now searching for parenting " tips " for AS to print off so

DH can see it in writing......maybe then it will " stick " lol.

We've been battling this

for 9 years, almost 10.

Disney was one of the

first times I really noticed DH was not getting it. All wanted to

do was be at the pool at the condo, or on a park bench drinking a soda.

He ran out of a bugs life at top speed screaming and I thought I was going to

loose him for sure. All DH kept saying to him was " We spent all this

money....drove you to the biggest playground in the world and you don't want to

do anything??? He wanted to force him on some things so he would

" get over it " and I had to put my foot down!! I've been

stomping it ever since!!

Advice Needed

I just

wondered if anyone could give me some advice. We have a second time doctors

appointment. The doctor we will visit is the one whom dx his Autism. Remember

the dx: Autism Spectrum disorder, Language Disorder with High IQ. We have

to travel over an hour away to see this doc and I want to make sure I cover my

territory. I am asking anyone for some advice on what to ask doc, concerns etc.

I know you all don’t know my son personally but any pointers can help, IM

sure many of you have lots more experience with your doctors you all see. Any

pointers would be greatly appreciative. Anything about Meds…How to handle

him, what to do with our school system. Anything you can think of please!

Devin is

7 nearly 8, 2nd grade and gifted. IM seeing a lot of “there

has to be consequences for his actions” from the school and at times at

home he can worry the horns off of you. We decided we were going to do a family

game. Well, monopoly wasn’t the greatest choice. He bugged my husband to

death over and over can we play again? Fixated. I thought my husband was going

to blow a fuse. <Here we go again> how do you all handle things as such?

[Guest guest]

I thought Pretending to be Normal was a great book.

I've been having difficulties with our school as well. It's so frustrating to me that the people who should be willing and able to help Cameron the most, aren't. Working with them has been like taking an unwilling child to the dentist to have teeth pulled.

I also can relate to the differences in parenting styles. My husband is very easy on both the kids, and I'm the disciplinarian. He think Cameron is just fine and that I am making a bigger deal out of things than he thinks they are. Very frustrating!

Anne

-- RE: Advice Needed

Hey Charlotte,

I just wanted to let you know how our doctor’s appointment went. We were set straight about the positive reinforcements. The doc said “if you are using this at home and the school is not, then it disrupts every thing that you already done, everyone has to be on the same page”. My hubby almost hit the roof when I told him what happened when I picked Devin up from school today, to go to our doctor’s appointment. When I went to check Devin out of his class, he was sitting at the teacher’s desk with her standing over him. I knocked on the door; the teacher took Devin by the shoulder and was escorting him to the door to where I was. When she opened the door, we were exchanging a few words, small talk, why Devin hasn’t been at school, we are all sick, I have an eye swollen and red and we were discussing it. Meanwhile, Devin being Devin, he wondered back into the class room to say bye to everyone. To my surprise….The teacher yelled “Didn’t you hear what I said”? I was amazed, shocked and by this point was walking away. I was in misbelieve why she done this in front of me. What’s the deal here? It took me a little while to realize what she had done when I got to the car, I realized what had happened.

We get to the car where my husband was and I told him what had happened. He was upset. But he does the same. We both loose our cool with Devin, him more so than me, we have yelled but mainly out of frustration. We were discussing this on the way to our appointment, for we had an hour’s drive ahead of us. I began taking notes; I wanted to make our time with the doctor a good one. IM looking for answers. We are only human, we loose our cool, become frustrated and we don’t know how to deal with a seven year old. (Sad) I’m too lenient and he is too harsh. We began to discuss other things. How my son acts differently when IM in the house, when it’s just him and my husband he’s an angel, so my husband says. Which leads him to believe he can control most things if I can be more aggressive? I then explain look, maybe he associates or has became familiar with a “visual” picture of you when you have become highly frustrated maybe that’s why he does things differently when it’s just the two of you. Regardless how or why he controls himself more so with you I don’t think he can control some of the things he does. Believe me, if you ask him to stop doing something and he doesn’t, it’s not because he doesn’t want to stop. This is a medical condition. We took this to the doctor, he didn’t say much about it but I did bring up a lot of good points according to the doctor. The only point the doc made about this particular subject is that they do act a certain way depending on what they can get away with, with each person. IM like ….great….I bet I hear this one later on. My husband asked a lot of questions and told the doctor we are learning and working on ourselves and making this work between us.

The other thing the doctor was saying he is more worried about the school; I took in documents from the school to show him what was going on. Devin not finishing his work not because he doesn’t know how to do it but it’s like he is rebelling. The doctor said, “They are brainwashing him to fail”. Lovely…huh? Like how am I sup post to fix this one? We talked about his teacher and it was like, “this is the type of teacher you need” yes, it’s the type we need but I can pick and choose. The doctor was very upset with the school and so am I but its not easy dealing with a public school system. I am afraid of the outcome for my own son if I do push the issues. Don’t get me wrong, I will push…have been for awhile. Lastly he said, “Give them time to do something, but don’t hesitate on hiring a lawyer.”

It’s great advice but no handbook given. J IM going out to buy some books soon…any suggestions?? We need like …understanding why he does this or that, then how to handle it. Please and thank ya,

Deb’s in Bama

-----Original Message-----From: designs [mailto:scottdesigns@...] Sent: Sunday, February 06, 2005 4:56 PMAutism and Aspergers Treatment Subject: Re: Advice Needed

Oh am I ever lol!

Drives me buggie!! I am online now searching for parenting "tips" for AS to print off so DH can see it in writing......maybe then it will "stick" lol.

We've been battling this for 9 years, almost 10.

Disney was one of the first times I really noticed DH was not getting it. All wanted to do was be at the pool at the condo, or on a park bench drinking a soda. He ran out of a bugs life at top speed screaming and I thought I was going to loose him for sure. All DH kept saying to him was "We spent all this money....drove you to the biggest playground in the world and you don't want to do anything??? He wanted to force him on some things so he would "get over it" and I had to put my foot down!! I've been stomping it ever since!!

Advice Needed

I just wondered if anyone could give me some advice. We have a second time doctors appointment. The doctor we will visit is the one whom dx his Autism. Remember the dx: Autism Spectrum disorder, Language Disorder with High IQ. We have to travel over an hour away to see this doc and I want to make sure I cover my territory. I am asking anyone for some advice on what to ask doc, concerns etc. I know you all don’t know my son personally but any pointers can help, IM sure many of you have lots more experience with your doctors you all see. Any pointers would be greatly appreciative. Anything about Meds…How to handle him, what to do with our school system. Anything you can think of please!

Devin is 7 nearly 8, 2nd grade and gifted. IM seeing a lot of “there has to be consequences for his actions” from the school and at times at home he can worry the horns off of you. We decided we were going to do a family game. Well, monopoly wasn’t the greatest choice. He bugged my husband to death over and over can we play again? Fixated. I thought my husband was going to blow a fuse. <Here we go again> how do you all handle things as such?

[Guest guest]

Oh, no! It's never good if they think the doctor has come up with anything to validate their opinion!! It gets twisted and used the wrong way (such as in attacking your parenting) and then it seems to be the only part of the entire session that they absorb!

My son's therapist has had it with this school too but I am waiting until we go in to confirm the AS/ASD diagnosis next Tuesday to really get on them. Once I have it all in writing then I can insist on certain modifications and moving from a 504 to an IEP for middle school next year.

I am surprised that the teacher behaved that way in front of you, but then again, some people never cease to amaze me, like that lady making drink that "apple water"......she won't even look at me now though! She's lucky she wasn't reported!!

Have you ever thought of 1-2-3 Magic? It works and even comes in a video that DH would probably watch. You could maybe get the school to use it too.

Hang in there!!

-Charlotte

Advice Needed

I just wondered if anyone could give me some advice. We have a second time doctors appointment. The doctor we will visit is the one whom dx his Autism. Remember the dx: Autism Spectrum disorder, Language Disorder with High IQ. We have to travel over an hour away to see this doc and I want to make sure I cover my territory. I am asking anyone for some advice on what to ask doc, concerns etc. I know you all don’t know my son personally but any pointers can help, IM sure many of you have lots more experience with your doctors you all see. Any pointers would be greatly appreciative. Anything about Meds…How to handle him, what to do with our school system. Anything you can think of please!

Devin is 7 nearly 8, 2nd grade and gifted. IM seeing a lot of “there has to be consequences for his actions” from the school and at times at home he can worry the horns off of you. We decided we were going to do a family game. Well, monopoly wasn’t the greatest choice. He bugged my husband to death over and over can we play again? Fixated. I thought my husband was going to blow a fuse. <Here we go again> how do you all handle things as such?