new to group

[Guest guest]

Hi Anne,

I live in Austin - not far from San Marcos (we are about as far South in

Austin as you can get and still be in Austin!) We have a pediatrician

here in Austin that I like - but we are thinking about going to another

one soon. I had to FIGHT for a diagnosis because Hayden is now 7 and

has been getting fevers since she was an infant. I would be happy to

pass along some info regarding doctors in Austin if you want me to - you

can email me directly at katie@.... My Dad is an Endocrinologist

and he told me that he knew Hayden had - I finally printed off

something from a website and took in all the dates for the last year she

had her fevers - the pediatrician FINALLY agreed with me. Just fyi - we

were not seeing her primary care doc that day.. we were seeing a

different one who I have now made her Primary. She was really nice and

told me she was surprised we had not gotten a diagnosis earlier. They

want me to take her to the ID doctor to rule out anything else and then

we may look at a tonsillectomy. I am hesitant about going to the ID doc

because I heard they do a lot of bloodwork - and I think her symptoms

are pretty classic for . I may just take her to the ENT and see

what he says. Has anyone else consulted an ENT???

As far as school goes, Hayden misses 4-5 days each month. This didn't

pose a problem with kindergarten or first grade (we had a standing

doctors note in her file) - but I have heard second grade is more

demanding - so they said she may have to be 504'd... we will see how

things go.

Good luck with the move!

Daughter Hayden - 7 -

Austin, TX

________________________________

From: [mailto: ] On Behalf Of

Anne Tomasso

Sent: Thursday, June 22, 2006 1:58 PM

Subject: New to Group

Hello,

I have joined this group at the suggestion of a friend who has a

daughter diagnosed with PAPA. She is new in our town and prior to

meeting her I had never heard of this condition. I have a nine year old

daughter who has had frequent, often high, fevers since about the age of

2 or 3. At age 4 she was diagnosed with asthma and I always assumed the

fevers were related to that.

In April of 2005 I took her out of school and began home her. Prior to

that she had 20-30 absences each year which made us " truant " . I felt

that school was for stressful for her and me and that stress was making

her sick, which it probably was, at least indirectly. Since removing her

from school, she has had no asthma and only a few fevers until about 8

weeks ago when we learned we would be relocating from SC to TX (return

of stress?). She is now in bed with her 4th fever since early May. She

has not had an asthma attack for a year and I took her off the inhaled

steroids in March, which I have since learned may have been suppressing

the fevers, if indeed she has this condition.

About her symptoms..., The fevers have been as high as 106.6, but

usually run at about 103-104. She often has no other symptoms except

extreme fatigue and general body aches. She sometimes gets sore throats

with them, but no mouth sores. She is quite small for her age (54 lbs at

9 yr. 10 mo. old), but I am also a relatively small woman at 5'2 " and

115 lbs. She had a severe bout of mycoplasma pneumonia at age 3.

Usually, when she is sick, neither my husband nor I catch it from her.

She is our only child.

We are moving to San Marcos, TX in July and I would like to know if

anyone knows of a good physician in the Austin or San Marcos area

experienced in dealing with this. We could go to San if

necessary. What should I expect as far as reaching a diagnosis?

Thanks in advance,

Anne in SC

[Guest guest]

Has anyone else consulted an ENT???

>

As far as school goes, Hayden misses 4-5 days each month. This didn't

> pose a problem with kindergarten or first grade (we had a standing

> doctors note in her file) - but I have heard second grade is more

> demanding - so they said she may have to be 504'd... we will see how

> things go.

>

>

>

>I had consulted an ENT for my son. Originally the infectious disease

doc suggested we were dealing with a viral sinus infection due to

allergies and wanted me to see an allergist. I chose a local ENT who

also does allergy workups. Our sinus CT scan was negative. He was

familiar with and agreed with the rheumatologist about a

possible tonsillectomy. Supposedly my sons tonsils are a 2+. They

aren't enlarged, but they aren't clearly defined and " a bit dicey " .

He said normally this wouldn't pose a problem and they wouldn't

suggest removing them, but in our case it might be a good idea. I am

hesitant because the rheumatologist said it was only 60% effective

and she just had a family who did have their child's tonsils removed

and it did not help at all ( this she says after telling me that it

would be my best option and to discuss it with the ENT). I also asked

the ENT if there were any long term follow ups on kids who did have

them removed? Were they cured permanantly or did their symptoms

eventually return? He could not answer that for me and said he would

be curious to find out as well.

I am concerned about the school issue. I just got the report card and

we had 7 absences and 4 lates. Not bad considering one fever occured

during school break ( at least 2 more absences right there ) and I

sent him to school with the last fever. ( which was on a Friday so

that would have been only 1 absence involved). Plus when I found out

he had such a pattern, I stopped keeping him home the second day of

his fevers so we avoided more missed school.

One of his fever occured during our Terra Nova Standardized Testing.

He missed one day of it ( had to make it up) and I sent him to school

for the rest of it.

[Guest guest]

graduated from community college (with honors!) this past Spring, will be going away to college in Sept. to finish up his last two years for his Bachelor's degree. I have many anxieties about how he will do at college away from home....the social >>

HI Ann

Will he go to a college that is smaller for his BA or BS degree? That is usually recommended. Will it be somewhat close to home? Many people say that most colleges, not all, have a good special education department and a spec ed resource office and person of contact to talk to before the person gets started at the college. Have you contacted the person? Will they give him some accommodations under the 504 laws? They should!

My son starts College in one year, as he is entering his senior year of high school in one month. So, anything you can share, and tell me, I am all ears and would love to learn as you do too.

hugs and welcome to the list.

in IL

[Guest guest]

Hi , He is going to a small college about an hour away from us, so it won't be too far. Plus, my parents live in a neighboring town, that will be a big help as well. When we looked at this college we were struck by how there was a strong sense of community and how caring everyone seemed to be. So, it was a bit of a no-brainer for us. I hope it turns out to be as good an experience for him as we are hoping. The school is aware of his Asperger's and his leg condition (they need to know about his leg for medical reasons, in case of an emergency), and they do have services available for disabled students. For his first two years we let Matt choose how many of those services he wanted to access, whether he wanted to receive accommodations. He chose not to, and it worked out fine for him. He did very well in community college without them, graduated with a 3.85

GPA. So, I expect it'll be the same for the next two years. He appreciates knowing that the services and accommodations are there, but he's at a point where he wants to try things on his own, and that's a good thing, I think. Also, one thing we had sort of forgotten about is that parents are not really part of the college process (except writing the checks, of course! LOL), that the students are considered adults, so unless the student signs a waiver, the colleges will speak to the parents only in very general terms and not about the student's progress! We had him sign a waiver for his community college, turns out we didn't really need to, he did well enough so that we could back off and let him do his thing. It was such a relief and actually quite rewarding after the nightmare we had with him in HS. AnnLaha1960@... wrote: graduated from community college (with honors!) this past Spring, will be going away to college in Sept. to finish up his last two years for his Bachelor's degree. I have many anxieties about how he will do at college away from home....the social >> HI Ann Will he go to a college that is smaller for his BA or BS degree? That is usually recommended. Will it be somewhat close to home? Many people say that most colleges, not all, have a good special education department and a spec ed resource office and person of

contact to talk to before the person gets started at the college. Have you contacted the person? Will they give him some accommodations under the 504 laws? They should! My son starts College in one year, as he is entering his senior year of high school in one month. So, anything you can share, and tell me, I am all ears and would love to learn as you do too. hugs and welcome to the list. in IL

How low will we go? Check out Messenger’s low PC-to-Phone call rates.

[Guest guest]

there are some great resources with strategies for

Asperger's individuals attending college. If you would like them, I am happy to

forward them to you. I have converted some of them into PDF and have them in

their entirety. I am happy to share them with you if you send me your email.

Clemy

[Guest guest]

there are some great resources with strategies for

Asperger's individuals attending college. If you would like them, I am happy to

forward them to you. I have converted some of them into PDF and have them in

their entirety. I am happy to share them with you if you send me your email.

Clemy

[Guest guest]

Hi Clemy Yes! I would love it if you could forward them to me! You can email them to me at aspiemom22222@.... Thanks so much! AnnCG <mcclem4748@...> wrote: there are some great resources with strategies for Asperger's individuals attending college. If

you would like them, I am happy to forward them to you. I have converted some of them into PDF and have them in their entirety. I am happy to share them with you if you send me your email. Clemy

Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less.

[Guest guest]

Welcome ! My son is 3 yrs old, and when he initially started fevering

over 6 months ago, we noticed the frequency increase - to about 11 days

between episodes. He is now taking Singulair (for allergies, but may have a

positive effect with periodic fevers, too), and we've almost doubled the

time in between. Yeah! Not sure if our experience is the same as anyone

else's.

Kate, Mom to Ben (diagnosed ; possible HIDS)

[Guest guest]

Donna,

Your family, do you mean parents, husband or children? How do they

specifically treat you? Are they too accomodating? Or do they just

ignore you until better? Mine ignores me until I am better. But I

tend to turtle when sick.

Dawn

>

> Hi Everyone!

> I just found your group and it sounds like just the 'medicine' the

> doctors may NOT have ordered.

> I will attempt to give a 'nutshell' version of my condition.

>

> In Sept 2003 I was diagnosed with Pulmonary Hypertension. Then in

> November 2003, after a lung biopsy to give diagnosis of what else

was

> going on with my lungs, I was told I also have Idiopathic Pulmonary

> Fibrosis. Since then, it has just been one thing after another.

>

> Most recently I was given the news that I have neuropathy (after

going

> thru a year of pain and being unable to walk or some days even MOVE

my

> feet); then in June was told I have the start of cataracts; in July

> was told due to my Blood Sugar Level (367) I am now classified as

> diabetic. These as a result of taking prednisone for the IPF.

>

> Support? Yea, I feel the need from time to time. My family, and I

> have no doubt of their love, appear to either be in denial ~or~ they

> think that by making me do for myself I will magically be cured.

> Don't get me wrong .... I do not WANT others doing for me if I am

> able, but when I am in 'bad days' I would like to know I can ask for

> assistance without being made to feel I am 'lazy', 'not trying', or

> just wanting to be 'pampered'. Sure we all love a little pampering

> from time to time, but that is not my goal.

>

> How do I get my family to understand this. I've told them, but it

> just does not seem to be soaking in. I'm TIRED ... not tired to the

> point of giving up, .... but just tired of trying to get some

> understanding.

> Can anyone offer any suggestions of how I can get thru these pity

> parties I tend to go on when I really get down?

> Thanks in advance.

> PS ... for the record, I tend to 'lurk' and read than post, but I

will

> offer support for those I feel I can help. Either way, know that

I

> am a firm believer in prayer and each of you will be remembered in

my

> prayers daily.

> Donna

>

[Guest guest]

Hi, my son (5 1/2 yrs old) is on prednisone 15 ml and this has

cut down the time the fever episodes last. When he began fevering

10/04 the fevers whould last 4-5 days with high temps 105-107. Now

since the prednisone the fever lasts 1-2 days still with high temps

but now are becoming more frequent (2 weeks instead of 4-6 weeks)

also says " he can smell his sickness " similar to what your

smelling with your son. Josh also complains that his knees/legs hurt

too. My husband and I have experianced the same response from the

doctor, once they realized the fever wasn't life threatening, the

level of concern dropped. It's difficult because between episodes

is " normal " . My prayers are with you and your son.

Bonnie

>

> Hi all, Reading through these postings is so comforting for me. My

> son Nicky is 5 and has had fever, severly swollen glands since he

> was 2 1/2. His first episode came on very strong with very high

> fever for almost 10 days - on the final day before having to admit

> him to hospital, the fever broke and poof - the doctors were no

> longer concerned. This pattern contiued (although it took me a

while

> to notice a pattern). Only this year, due to him missing out on

some

> pre-school events, did I insist his dr DO SOMETHING. After turning

> down his recommendations of Prednisone/tagamet (it seemed to me at

> the time to be throwing random meds at my son), I took him to ID

> specialst (The same one we saw at 2 1/2). Now one week after that

> appt, Nicky started fevering, et al. Blood test today per the ID

> dr. and then she says we will KNOW if it IS . So then I will

> have to consider pred or tagamet for next episode. His illness is

> not like clockwork - he gets sick anywhere between every 4 - 8

weeks

> and has had at least one episode that lasted only 3 days, but

> usually it is more like 5 -7 days. Nicky gets tired, lethargic,

102 -

> 104 fevers with vomiting at beginning of fever. Really sore and

> swollen tonsils to the point where he cannot turn his head. Tylenol

> and Motrin help. He also complains on knee/leg pain, but not too

> bad. I am concerned about giving prednisone and the ID doc says

> tagamet is daily and ongoing rx, which seems like a lot of meds for

> a little kid. Any thoughts out there on prednisone and how it has

> worked for you? Also, I can smell a certian odor in his breath when

> he is going to get sick like this - can anyone comment on that?

> Thanks for reading...

> Jenn Tardella

>

[Guest guest]

Welcome Donna,

Wow you have a lot going on! I just listed all my problems in my last post. As for other people even (especially) family if you figure out how to get them to understand you let me know. I have tried giving them websites, articles, etc, and they a) don't want to read about it don't want to hear about it (from me)

love and hugs,

PS I am a Christian as well and always happy to pray for anyone.

[Guest guest]

Oh Man ... LOL . I was so concerned about NOT writing a novel in my

first post that I forgot the paticulars of ME.

I am a 60yo female, living in Tennessee. My husband and I have 3

grown children and 2 very precious grandchildren.

Our sons still 'sorta' live here at home. Suffice it to say ...

they've been out on their own, encountered some problems, so moved

back home til they could get things straightened out. Our daughter

lives appx 600 miles away in Georgia. I need to clarify that the ones

in 'denial' are my husband, youngest son, and my daughter. My eldest

son is 'my rock'. He is most supportive, although I do not believe he

recognizes the full scope of my health issues.

No, they do not ignore me on my bad days. I too tend to turtle and

prefer to be left alone also. What I am referring to is when I am not

able to walk to the kitchen or bathroom, I am aware that I am putting

a burden on their day-to-day lives. Fortunately, since being put on

meds for the neuropathy, I have not had those days. My biggest

problem is now the shortness of breath from the PH and IPF. Some

days, just walking 10 feet drains all my breath. I am on oxygen 24/7

but this is just to put oxygen into my system .... it does nothing to

help the SOB (shortness of breath)

I just want the family to understand that I am no where near what I

use to be and they (especially husband) just don't seem to get it. He

makes suggestions about 'cooking', 'traveling', 'tzaking walks', --

all the things I USE to do but am unable to do as before. I do some

things, but at a much slower pace. I've told him I have not problems

preparing some of his favorite dishes, but I can't just throw it

together like before. I must have ingredients on hand and take most

of the day to prepare. I don't know if this is making sense or not,

but bottom line ..... I'm not the woman I use to be! No more funning

out to the store if I need something etc.

O tale 11 different medicines, along with the oxygen 'leash' and some

days I feel the meds cause some of my blahs. My pulmonologist is

presently weaning me off of the prednisone and for that I am MOST

grateful. That is a tough drug. I know my body is adjusting to the

lower dosage each time he lowers it and it takes a while for me to

bounce back.

Here I go again writing that novel. LOL ..... that is why I tend not

to post so much because I have issues with being able to QUIT talking.

Thanks for reading, if you made it this far. Please continue to ask

questions and I will atmpt to shorten my reply in the future. <img

src= " http://www.postsmile.com/img/emotions/116.gif " border= " 0 "

align= " ABSMIDDLE " alt= " PostSmile! " title= " " >

..

> >

> > Hi Everyone!

> > I just found your group and it sounds like just the 'medicine' the

> > doctors may NOT have ordered.

> > I will attempt to give a 'nutshell' version of my condition.

> >

> > In Sept 2003 I was diagnosed with Pulmonary Hypertension. Then in

> > November 2003, after a lung biopsy to give diagnosis of what else

> was

> > going on with my lungs, I was told I also have Idiopathic Pulmonary

> > Fibrosis. Since then, it has just been one thing after another.

> >

> > Most recently I was given the news that I have neuropathy (after

> going

> > thru a year of pain and being unable to walk or some days even MOVE

> my

> > feet); then in June was told I have the start of cataracts; in July

> > was told due to my Blood Sugar Level (367) I am now classified as

> > diabetic. These as a result of taking prednisone for the IPF.

> >

> > Support? Yea, I feel the need from time to time. My family, and I

> > have no doubt of their love, appear to either be in denial ~or~ they

> > think that by making me do for myself I will magically be cured.

> > Don't get me wrong .... I do not WANT others doing for me if I am

> > able, but when I am in 'bad days' I would like to know I can ask for

> > assistance without being made to feel I am 'lazy', 'not trying', or

> > just wanting to be 'pampered'. Sure we all love a little pampering

> > from time to time, but that is not my goal.

> >

> > How do I get my family to understand this. I've told them, but it

> > just does not seem to be soaking in. I'm TIRED ... not tired to the

> > point of giving up, .... but just tired of trying to get some

> > understanding.

> > Can anyone offer any suggestions of how I can get thru these pity

> > parties I tend to go on when I really get down?

> > Thanks in advance.

> > PS ... for the record, I tend to 'lurk' and read than post, but I

> will

> > offer support for those I feel I can help. Either way, know that

> I

> > am a firm believer in prayer and each of you will be remembered in

> my

> > prayers daily.

> > Donna

> >

>

[Guest guest]

Also, I can smell a certian odor in his breath when

he is going to get sick like this - can anyone comment on that?

Jenn,

My son almost always has had a tell tale odor in his breath during an

episode.

Often times his urine also has an extremely strong odor as well.

Ellyn

Mom of (Periodic Fever) (5),

Alyssa(8), and Kate(4)

Philadelphia, PA

[Guest guest]

I too always notice it with my son during a fever episode. I have always related

it to his throat. His throat always gets red and inflamed with the yucky white

stuff on his tonsils (looks like strep, but always negative). So, that has

always been my thought.

Patti, Mother of Brady 7 1/2

ellyn.trickey@... wrote:

Also, I can smell a certian odor in his breath when

he is going to get sick like this - can anyone comment on that?

Jenn,

My son almost always has had a tell tale odor in his breath during an

episode.

Often times his urine also has an extremely strong odor as well.

Ellyn

Mom of (Periodic Fever) (5),

Alyssa(8), and Kate(4)

Philadelphia, PA

[Guest guest]

Ellen,

My doctor said this was due to the pharyngeal (pharyngitis)

involvement. For us it was the first sign that my daughter would

start an episode that day. Sure enough fevers were brewing within

hours. It is a classic smell and I could pinpoint it right away.

Christy

>

> Also, I can smell a certian odor in his breath when

> he is going to get sick like this - can anyone comment on that?

[Guest guest]

Dear Donna,

Don't worry about writing "a novel" I really like reading people's posts and they are better than novels for me! I am sorry to hear about your lung diseases. My daughter has cystic fibrosis but she is doing very well, she doesn't need o2 yet. She does nebulizer treatments daily, twice daily actually. Her x-rays show scarring and bronchiectasis however. Have you tried zithromax for the inflammation? They are using it for CF patients with good results. takes 500 mg 3 times a week. Just curious if they are using it with other lung diseases.

I will be praying for you!

love,

[Guest guest]

Kathe,

A VERY special WELCOME to you and Isaac.

Please fill us in the abnormal chromosone...

When you and I met at NIH last March... they were doing the genetic studies.

Would love to know more...

Give Isaac a BIG hug from Joe and me.

Fondly,

Fran

Fran Bulone RN

Mom to ph 7yr

Waxhaw NC

/

[Guest guest]

I always think I am so busy with my 4 girls, I can't even imagine how busy you

are. I keep reading these posts and think, What a blessing that these kids

have such incredible mom's (and a few dad's) Are they not so blessed!

---------------------------------

All-new - Fire up a more powerful email and get things done faster.

[Guest guest]

Fran,

It is good to hear from you. I have been reading many emails from this group.

I am impressed by how supportive it is. It is so great of you to support this

as you do.

Isaac and I will be at NIH on Sept 19th through Sept 23rd. We should be able to

connect. I was excited to see that our dates will cross.

Kathe

Isaac 2 unknown fever disease

Nebraska

Re: new to group

Kathe,

A VERY special WELCOME to you and Isaac.

Please fill us in the abnormal chromosone...

When you and I met at NIH last March... they were doing the genetic studies.

Would love to know more...

Give Isaac a BIG hug from Joe and me.

Fondly,

Fran

Fran Bulone RN

Mom to ph 7yr

Waxhaw NC

/

[Guest guest]

Welcome Kathy , we love to welcome new members although we are sadden that you are infected with hep c . So jump on in and make yourself at home , lol if you have any questions please don't hesitate to ask them .

New to group

Hi all...........I joined this group a week or two ago, hung out to read posts to learn who you were. I'm 38, a single mom of one.........Diagnosed 5 yrs ago with hep c.No one in my family will discuss it. And I have no support really.So I thought I'd come here. Looks like a really good group. Do you mind a new person jumping on board? I have a few questions, and just looking to chat..........Thanks.Kathy

[Guest guest]

Hi and welcome to the group! My son has been fevering for 17 months

now. He's fever aren't super consistent - but they occur monthly

usually. Sometimes with 2 week intervals and once (this last one -

with 48 days in between the fevers - I was starting to think that I

had over reacted - even though it had been going on for 17 months)

and he started his fever again Friday. I don't THINK that they have

to have the mouth ulcers to have - my son doesn't. He gets the

fever, the sore throat, the joint pain and the swollen neck and his

ID just diagnosed him 2 weeks ago with . He is currently

undergoing blood work every 2 weeks for 12 weeks to check for cylic

nueopenia. So we'll see about that. Also - we are going to is

Rite hosptial in Nov. to meet with a rhuematologists - so we will

see what she says.

Hang in there - and enjoy the times that they aren't fevering - and

it is hard to be a parent to the other child when the one is

sick . . . I totally understand.

Start your researching and reading now - it will pay off later.

Hannah

Aidan (3)- fevering for 17 months

Sid - (5)- and fine . . .

[Guest guest]

Hi Margie. I'm in Los Angeles as well. Our pediatrician is in Northridge and

thinks our 3 year old daughter has although I'm not entirely convinced.

She doesn't have mouth ulcers or swollen glands, but, in other respects, she

fits the diagnosis, although her cycles are 6-8 weeks, not 4. Outside of the

fevers, she's a pretty healthy girl.

It's hard to know how to proceed when there isn't a certain diagnosis or

treatment. This board has been a great source of information.

Best of luck to you,

Mirth White

[Guest guest]

Hi all,

I am also a new member. My daughter, Sara, has been fevering for almost a

year. She just turned 19 months old. As most of you had said, I was tired

of hearing that it was just a virus when I knew it was not normal to get a

virus once a month +/- 3 days. Luckily, I switched dr.s and this new dr. is

my hero for even suggesting it is something other than a virus.

Sara gets high fevers, in the 105 range and two times that we know of she

has had throat blisters. We went to see a rheumatologist for the first time

last Friday at Hackensack Medical Center. My husband and I felt very

comfortable with her. She had Sara have blood work done now while she was

well and she wants to do it again when she has a fever. She also wants to

see her when she has a fever. She is looking into a few things, , FMF,

etc. So, it seems like most of us are playing the waiting game to see what

the actual diagnosis is. Hopefully for all of us, it is something that can

be easily treated.

Keep in touch

Maureen

[Guest guest]

Your story matches ours exactly Margie. Although our son's episodes

were a little more random, he also has no mouth sores and we also

educated the doctors on this. We did try prednisone and we have been

one of the lucky families that did not experience increased frequency of

symptoms. Honestly, as many people will attest on here, it is like a

miracle, and it makes you wonder if you were imagining the onset of an

episode, even though you weren't. We have had terrific luck with one

teaspoon at the onset of an episode. That is all it takes for my son,

, as long as we catch it in the first 12 hours or so.

Good luck with everything.

Father of - 4-1/2

________________________________

From: [mailto: ] On Behalf Of

Margie

Sent: Sunday, October 01, 2006 5:24 PM

Subject: new to group

Just wanted to introduce myself to the group, and also ask a couple

questions. We have a 3 year old daughter, Rowan, who has been

having periodic fevers every 3-4 weeks for at least 9 months, if not

longer. She appears to fit the criteria (high fever for 3-5

days, red throat, swollen glands, totally fine in between episodes.

Except we haven't noticed the mouth ulcers, but it also looks like

those can be missed at times? We're still in the process of having

labs to exclude other things. We found the diagnosis ourselves, and

kind of feel like we are educating the doctors about the disorder

and treatment. Even though she doesn't have the actual diagnosis

yet, they are agreeing it is most likely . It's been very

frustrating.

We're planning to try prednisone the next episode and see if that

helps, which I guess can be somewhat diagnostic? although I'm

worried about increasing the frequency of episodes...

my main question is, it appears that a tonsillectomy is the

treatment of choice in the articles, as it looks like it's cured

many children. Have people waited long before attempting this, and

if so, why?

Thanks for any feedback.

Margie

Los Angeles, CA

[Guest guest]

Have you tried the Autism Society of America Greater GA? I don't remember

the telephone number but their web address is www.asaga.com

New to group

My name is . I have a wonderful, beautiful 19 year old daughter

with a cortical vision impairment and autism spectrum disorder

resulting from brain damage present at birth. She also has extremely

mild CP, and has a shunt for hydrocephalus. She is an energetic,

personable, loving person with a desire to learn on her own terms.

Throughout the years we have run into many obstacles including

professionals that didn't believe in her ability to learn. We have

continued pursuing learning and even these last two year, she is making

amazing progress learning to read Braille after being told since she

was seven (and for many years after) that she would never read.

My daughter has a very strong desire to have a job post high school.

She has her sights set on being a caregiver of some kind. She loves

'taking care of' sick, injured, or sad people. Our school system does

not have a good transition program, but I have administration and

teachers interested in improving it. This is what has lead me to your

group.

I am seeking info about improving the transition program in my

community, and making more opportunities available for the children

coming through. Parent and/or teacher resources are welcome. Any

help, advice would be great.

Thank You.

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