Just diagnosed

May 17, 2004

Hi Bon - My son had surgery in Feb. to remove a c'toma. The

surgeon waited 8 months after diagnosing to do surgery and I believe

that if done sooner they would have saved his incus bone (middle ear

bone). It was badly eroded and now he has alot less hearing than

before his operation. He will have reconstructive surgery next Feb.

I guess it depends how big and aggressive your c'toma is, whether it

will effect your hearing or not. Reconstruction is not usually done

until a year later to make sure there is no re-growth. Hope this

helps and good luck to you. - Dee

> hello,my name is bonnie,i am 25 and been diagnosed a week ago with a

> cholesteatoma in my right ear(after a check up about a large

> perferation in my left ear),i had a cat scan yesterday and have to

> wait 3 more days to go over my results with the ear specialist.Since

> the diagnosis i have been searching for info on this disease.I am

very

> releaved to have found this site!!!its comforting to know i am not

the

> only one going through all this and feel very lucky/privleged that

> although i have a very low income, in australia we have a public

> health system,which means i can have surgery immediatly,without the

> further stress of finance.

> There are a couple of questions you might be able to help me with

> how commen is the disease?

> is it commen for doctors to sugest immediate surgery?

> will my right ear recover from surgery,will i be able to hear with

my

> right ear?

> thanks,bon.

May 20, 2004

Dear Carol,

Do you want to get together sometime?

Re: Re: Just diagnosed

I am in the northern California group too- I live in Chico!

Carol

Re: Just diagnosed

<< File: ATT00006.html >>

May 25, 2004

Dear Carol, I was thinking you were in , I don't know why. I think

Chico is about 2 1/2 hours from me. But we go near there to Lake Oroville

sometimes or I can meet between here or there or meet you on the way to

Stanford if you will be going there soon. Please e-mail me direct and we

can plan a get together!

Re: Re: Just diagnosed

That sounds fun! Carol

Re: Just diagnosed

<< File: ATT00006.html >>

October 25, 2004

Hi Biljana,

I was in the hospital for one night. My surgery was in the

morning and I left the following afternoon.

My recovery went well. I think I had just as much a problem with

depression around the time of surgery as the surgery itself. I

was terrified. I did not know about this site and did not know

what I was in for. My doctor put me in contact with a girl my

age that had the procedure and she helped me to relax.

I would do it again in a minute. I currently have no symptoms

except for the occasional spasm at night (maybe once a month).

And I just delivered a little boy last week with no problem.

Best of luck!

Jenifer in Ohio

>

> Hello to all. Yesterday I was diagnosed with achalasia. In the past

> four months i have had alot of difficulty swallowing foods and

> liquids,. especially together. Could somebody please tell me how

> long they were in hospital for their laparascopic myotomy and how

> was your recovery.

October 25, 2004

Hello!

Welcome to the group! Take the time

to read a few weeks back of posts, and you will learn so much! I had my

surgery Sept 29, and was out of the hospital after 2 nights. They did

want to send me home after the first night. My recovery was very

short. My surgery was on a Wed night, and I was at work on Day 14, and

could have gone back earlier. I had hardly any pain. Nothing that

children’s tylenol didn’t fix! I am still dealing with

spasms. I am having difficulty pin pointing them to any thing in

particular, so I can’t stop them from coming. If you read post # 19437,

it is the email I posted the day I got home from my surgery, and has more

detail, rather than reposting it. On the groups home page, there is a

spot to enter that number, and it’ll bring it up for you.

Take care,

21

Chilliwack, BC

just

diagnosed

Hello to all. Yesterday I was diagnosed with

achalasia. In the past

four months i have had alot of difficulty

swallowing foods and

liquids,. especially together. Could somebody

please tell me how

long they were in hospital for their laparascopic

myotomy and how

was your recovery.

January 30, 2005

>

Hello Jane,

Welcome to the group. I'm sure you will get the info you need here.

My daughter was nearly diagnosed PDD as she does play well and

doesn't have repetitive movements but she ended up with a diagnosis

of autism.

Did the specialists ever consider fragile X syndrome in their

diagnosis of Caleb. I only ask because microcephaly can be a symptom

of fragile X and this condition has other symptoms similar to

Autistic spectrum disorders.

Having said that I am no expert , just the microcephaly made me

think " Fragile X " .

I know about the feeling dazed thing when a diagnosis is first given.

it is certainly a lot to deal with .

I wish you and Caleb and the rest of your family all the best in

dealing with this.

xxx

> Hello,

> I just wanted to introduce myself. My name is Jane. My husband

(Tony)

> and I have three children; (17), Caleb (4) and Hannah (1).

>

> When Caleb was 9 mos old the circumference of his head had not

> changed at his well visit. Same thing at 1. We began a medical

> journey through evaluations. He was diagnosed isolated

microcephaly.

> He had no developmental delays until his third birthday. I was

> expecting Hannah so we attributed his odd behaviors to the arriving

> baby.

>

> After a while I noticed the behaviors weren't stopping. I was a

> social worker who worked with foster children that had special

needs.

> Not too many of them had autism but I began to suspect Caleb might

> have a mild case. He just finished his evaluations yesterday and

was

> diagnosed PDD, nos. The evaluator suspects his scores may be

higher

> but because he stays home with me the peer social peice of the

> evaluation was missing. One miracle that came out of the

evaluations

> is that his head grew this past year and he is no longer

> microcephalic. We had many people praying for Caleb.

>

> I had planned to homeschool my children. Now he will be beginning a

> full day intensive intervention program. I feel a little bit dazed.

> Suspecting issues is one thing; begining a whole life style of

> interventions so quickly is a little bit nerve wracking.

>

> I feel like there is TOO much information out there and it is

> contradicting so I am overwhelmed. What treatments are best? What

> about food allergies? feingold diet, fish oils. It is all so

> overwhelming on top of the day to day overwhelmingness of parenting

> Caleb.(who is the absolute joy of my life.)

>

> Anyway, I have written too long. I just wanted to introduce myself.

I

> am hoping for some insight and feedback.

>

> Thank you,

> Jane

January 30, 2005

Hi! Thanks for such a quick reply.

Actually the developmental psychologist has asked us to get a fragile x test. I never knew why or that they were related. We think he was already tested for it. He had a complete chromosonal screen, FISH for lissencephaly, down syndrome, as well as others. His micro cephaly was so below deviations that they thought he should not have been walking or talking but he was. We meet with his geneticist on Feb. 23 and have asked for a test of angelman syndrome.

The only thing that I can not figure out is if angelman is a spectrum disorder. He is not as severly handicap as they describe. No one has been able to answer that for me. Hopefully on Feb. 23 someone will.

Also in our family people don't talk about medical conditions, it is taboo. I broke that taboo and wrote to all of my cousins and grandparents. (my mother was mortified!) I found out that one cousin is asperger's and one cousins child on another side is autistic. The way that they describe the autistic child he sounds aspergers. He is 13 and around here (Connecticut) aspergers seems new.

Many many others reported boys with speech delays and behaviors that seem consistent with autism. My own two brothers had speech delays and both dropped out of school by eigth grade which in the early 90's was not usual around here.

My sister's son had birth to three and (now in K) they want him tested for aspergers. My grandfather graduated Magna Cum Laude from Brown University with a Math Degree and created much of the early computer language that we know today.

Unfortunately the rest of us don't seem to have the smart gene but I suspect Caleb has aspergers. He says odd things and "looks" for words. IE< He needs the word "ROAD" and says , "you know the path that cars go down. . ." .

Do fragile X kids do a lot of the behaviors that autism does? Can a fragile X child go in to imagenary and creative play. The doctor thinks that Caleb may be higher functioning (his report indicated he was developmentally 2 - 3 years old, he will be 5 in May) and he does 50 peice or more puzzles without the back. He also can beat all of us in any memory game. He sees it once and knows where it all is.

It is the taking off all of his clothes in 2 seconds flat in the middle of a grocery store and screaming loudly that is what he needs to work on (LOL) and transitions. 2 -3 hours to leave the house when he likes where we are going and this is after a few days of prompting! And then the same thing when we get to the next place, can't leave.

He is interested in kids, real excited and wants to play. He does not seem to know what to do.

And tolieting, well, he is potty trained if he is butt naked! He can't seem to discriminate that underwear are not diapers. We think it is a sensory problem but Kindergarten naked is not an option (LOL).

ANYWAY< does fragile x do these things? He does more too but I have written enough.

Thanks,

Jane -friends call me Kaz *** <dollcrazy@...> wrote:

> Hello Jane,Welcome to the group. I'm sure you will get the info you need here.My daughter was nearly diagnosed PDD as she does play well and doesn't have repetitive movements but she ended up with a diagnosis of autism.Did the specialists ever consider fragile X syndrome in their diagnosis of Caleb. I only ask because microcephaly can be a symptom of fragile X and this condition has other symptoms similar to Autistic spectrum disorders.Having said that I am no expert , just the microcephaly made me think "Fragile X".I know about the feeling dazed thing when a diagnosis is first given. it is certainly a lot to deal with .I wish you and Caleb and the rest of your family all the best in dealing with this.

xxx> Hello,> I just wanted to introduce myself. My name is Jane. My husband (Tony) > and I have three children; (17), Caleb (4) and Hannah (1).> > When Caleb was 9 mos old the circumference of his head had not > changed at his well visit. Same thing at 1. We began a medical > journey through evaluations. He was diagnosed isolated microcephaly. > He had no developmental delays until his third birthday. I was > expecting Hannah so we attributed his odd behaviors to the arriving > baby. > > After a while I noticed the behaviors weren't stopping. I was a > social worker who worked with foster children that had special needs. > Not too many of them had autism but I began to suspect Caleb might > have a mild case. He just finished his evaluations yesterday and was > diagnosed PDD, nos. The evaluator suspects his scores may be higher

> but because he stays home with me the peer social peice of the > evaluation was missing. One miracle that came out of the evaluations > is that his head grew this past year and he is no longer > microcephalic. We had many people praying for Caleb.> > I had planned to homeschool my children. Now he will be beginning a > full day intensive intervention program. I feel a little bit dazed.> Suspecting issues is one thing; begining a whole life style of > interventions so quickly is a little bit nerve wracking.> > I feel like there is TOO much information out there and it is > contradicting so I am overwhelmed. What treatments are best? What > about food allergies? feingold diet, fish oils. It is all so > overwhelming on top of the day to day overwhelmingness of parenting > Caleb.(who is the absolute joy of my life.)> > Anyway, I have written too long. I just

wanted to introduce myself. I > am hoping for some insight and feedback. > > Thank you,> Jane

January 30, 2005

Welcome Jane, I guess we were lucky in the fact that we got the DX

VERY early, but the information overload is very frustrating at

times, and there is always something new coming out. it has been my

experience with that we have to keep him away from artificial

sweeteners and caffine, and other wise just be sure he is eating

enough, we have found that has certian foods he will eat and we

try to incorporate those into every meal (gram crakers, peanutbutter,

cheese). for us as far as therapies we were at picture schedules last

year, he was able to get away from them for about 6 months and now we

are on detailed word schedules that he has in a binder for everything

he has to do, school schedule, chores, routines, you name it and we

put them in covers that he can use dry erase markers on to mark out

the steps as he finishes them, gives him a great visual and lets him

feel more independant. he uses any color EXCEPT red, the red one is

for adults (us and teachers) to mark out anything he WON " T be doing

for some reason and we write at the bottom in red what he will be

doing instead (going to the store, doctor, an assembly at school,

field trips) and it works well and is very descreet so he feels

comfortable using it anywhere. the most important advise I can give

you is to take time for yourself, you are your childs advocate and

this will be your life long 'career', if you get exausted and burned

out than you are no good for your child. be sure to schedule at least

15 minutes a day JUST for you, i find this is not possible till after

my kids are all in bed. a GREAT book i would suggest is 'aspergers

syndrome and your child, a parents guide' by D. Powers. it is

incredibly written and full of good ideas!

~Brightest Blessings, Angel

> >

> Hello Jane,

> Welcome to the group. I'm sure you will get the info you need here.

> My daughter was nearly diagnosed PDD as she does play well and

> doesn't have repetitive movements but she ended up with a diagnosis

> of autism.

> Did the specialists ever consider fragile X syndrome in their

> diagnosis of Caleb. I only ask because microcephaly can be a

symptom

> of fragile X and this condition has other symptoms similar to

> Autistic spectrum disorders.

> Having said that I am no expert , just the microcephaly made me

> think " Fragile X " .

> I know about the feeling dazed thing when a diagnosis is first

given.

> it is certainly a lot to deal with .

> I wish you and Caleb and the rest of your family all the best in

> dealing with this.

> xxx

>

> > Hello,

> > I just wanted to introduce myself. My name is Jane. My husband

> (Tony)

> > and I have three children; (17), Caleb (4) and Hannah (1).

> >

> > When Caleb was 9 mos old the circumference of his head had not

> > changed at his well visit. Same thing at 1. We began a medical

> > journey through evaluations. He was diagnosed isolated

> microcephaly.

> > He had no developmental delays until his third birthday. I was

> > expecting Hannah so we attributed his odd behaviors to the

arriving

> > baby.

> >

> > After a while I noticed the behaviors weren't stopping. I was a

> > social worker who worked with foster children that had special

> needs.

> > Not too many of them had autism but I began to suspect Caleb

might

> > have a mild case. He just finished his evaluations yesterday and

> was

> > diagnosed PDD, nos. The evaluator suspects his scores may be

> higher

> > but because he stays home with me the peer social peice of the

> > evaluation was missing. One miracle that came out of the

> evaluations

> > is that his head grew this past year and he is no longer

> > microcephalic. We had many people praying for Caleb.

> >

> > I had planned to homeschool my children. Now he will be beginning

a

> > full day intensive intervention program. I feel a little bit

dazed.

> > Suspecting issues is one thing; begining a whole life style of

> > interventions so quickly is a little bit nerve wracking.

> >

> > I feel like there is TOO much information out there and it is

> > contradicting so I am overwhelmed. What treatments are best? What

> > about food allergies? feingold diet, fish oils. It is all so

> > overwhelming on top of the day to day overwhelmingness of

parenting

> > Caleb.(who is the absolute joy of my life.)

> >

> > Anyway, I have written too long. I just wanted to introduce

myself.

> I

> > am hoping for some insight and feedback.

> >

> > Thank you,

> > Jane

January 31, 2005

Hello Jane,

My name is Carolyn, and I live in Oregon. I have four children, all grown, and one of them is Marty. He is 40 years old now and has had problems all of his life beginning with seizures when he was about 2. Up until then we didn't see anything different about him, was developing just like his two older brothers, talked some, knew some of his numbers and letters. Was a happy little guy. But his seizures changed all of that, and the doctors immediately started him on anti seizure drugs. The trouble is none of them worked, and the seizures got worse for years. And with all the drugs he took, and the seizures, he was not learning anything, so the label of retardation was pinned on him. Not that any of us could learn, all drugged up like that.

He went to a school for retarded students for about ten years, and did not do well at all there. So the labeled him again, as "non trainable mentally retarded." I don't think he ever was though, and have learned since then that he was more on the spectrum of being autistic rather than retarded. He just did too many things to outsmart his "trainers," like when they would throw the ball to him, and say, "Throw the ball," like they were talking to somebody who did not understand the barest minimum, when they were not looking he would throw it over the fence, and they would wonder what happened to the ball! He did many things like this. Hmmmm

Then he was mainstreamed into public junior high, and then high school for a half year or so. Both were disasters and his behaviors became very very bad, they called in "non compliant behavior," but I think he just did not like the noise and activity always going on at these schools. He hated to be singled out as "different," and fought me very hard every day when I brought him, rolled in the parking lot kicking and screaming NOT to go in. Hmmmmmmm

So when he was 18 I gave up sending him, and he has been home with me ever since. And we have had PEACE ever since. Why? Well because I give him a consistent and loving environment. He knows what to expect from me, and I do NOT put pressure on him to perform like a trained chimpanzee, but allow him to be himself.

He has not been violent, or non compliant in years now. I don't know why I am writing all of this, just need to vent I guess. We have just gone through a horrendous three weeks. Marty got pneumonia, it took three visits to the ER before they would HELP HIM, and agree with me that it indeed WAS an EMERGENCY, and I was at the right place. By then though his right lung had collapsed, and he required very serious surgery to uncollapse it! Six of seven days in ICU, and another week elsewhere, and he came home on Mon., a week tomorrow.

He seems to be doing very well, we walk him to the bathroom several times a day, and just took him out for a ride in the country, as it is very nice and sunny here. He is on oxygen for now, until his lungs work better I guess. A home health nurse is due tomorrow to check on him, and a physical therapist.

Maybe I just need to share with you, that YOU CAN DO IT! I am 63 years old, and I have done it, so you can do it. I go to God for strength, was at church this morning and kneeled at the altar, and the pastor prayed for me. I have relied on my faith in God all this time, and He has brought me through it all, and I think my son is a testimony to His great love, and I am a testimony also to how He blesses mothers, and how He helps us take care of our children, because He has helped me! Without Him in my life, I could do nothing.

And I take care of three grandchildren every day while my daughter works. They are a girl, age 7, a boy 4, and a little baby, 6 months. They will be back tomorrow morning, and there is NO school tomorrow, so the day will be noisy and hectic, and I am not quite up to it yet. Slept 2 weeks at the hospital in my son's room on not very comfy cots, but I know God will give me the strength I need to care for them.

Why would I doubt Him now, when He has taken me so far already!

Love to you all!

Carolyn, the other one in Oregon, not the main one who is a moderator.

just diagnosed

Hello,I just wanted to introduce myself. My name is Jane. My husband (Tony) and I have three children; (17), Caleb (4) and Hannah (1).When Caleb was 9 mos old the circumference of his head had not changed at his well visit. Same thing at 1. We began a medical journey through evaluations. He was diagnosed isolated microcephaly. He had no developmental delays until his third birthday. I was expecting Hannah so we attributed his odd behaviors to the arriving baby. After a while I noticed the behaviors weren't stopping. I was a social worker who worked with foster children that had special needs. Not too many of them had autism but I began to suspect Caleb might have a mild case. He just finished his evaluations yesterday and was diagnosed PDD, nos. The evaluator suspects his scores may be higher but because he stays home with me the peer social peice of the evaluation was missing. One miracle that came out of the evaluations is that his head grew this past year and he is no longer microcephalic. We had many people praying for Caleb.I had planned to homeschool my children. Now he will be beginning a full day intensive intervention program. I feel a little bit dazed.Suspecting issues is one thing; begining a whole life style of interventions so quickly is a little bit nerve wracking.I feel like there is TOO much information out there and it is contradicting so I am overwhelmed. What treatments are best? What about food allergies? feingold diet, fish oils. It is all so overwhelming on top of the day to day overwhelmingness of parenting Caleb.(who is the absolute joy of my life.)Anyway, I have written too long. I just wanted to introduce myself. I am hoping for some insight and feedback. Thank you,Jane

January 31, 2005

Hi Jane,

I really am no expert on this but if you had a chromosonal screen

they would have detected it , so he obviously doesn't have fragile X.

Fragile X has certain facial and bodily characteristics such as large

or long or protruding ears, long face, prominent jaw, can have

macrocephaly or microcephaly . More common on males, passed on from

the female.Males can have large testes. The behavioral symptoms are

very similar to autism. If you do an internet search you will founds

loads of info about it.

On the subject of these tests they do on our children to assess

delays . I honestly don't have a lot of faith in them anymore. I have

twins diagnosed with Developmental delay . one of whom is autistic,

as a parent in my mind the autistic child has a higher I.Q. but

teachers, therapists thought I was crazy when I said this.All the

tests showed the opposite. A lot of it has to do with the testing

environment. The latest test had my daughters in a quiet environment,

they were well rested and were not rushed. My autistic daughters

results showed very poor in activities related to speech

comprehension and fine motor skills. All other skills were average to

above average,counting skills were two years ahead.Her overall score

(remembering the low results bring her whole score down) put her as a

low average which means she is not devlopmentally delayed . The other

twin came up with a mild developmental delay. The point is her old

test results put the twin with autism as moderately delayed. Parents

really know their own children best. If you have a gut instinct about

your son's intelligence then I'm sure you are right. The puzzles show

excellent problem solving skills which is the basis for I.Q.

I have no idea about Angelman, you will have to explain that one to

me.

I have had a handout which is designed for grandparents of aspergers

kids , basically it points out that symptoms are not bad parenting,

that mum's and dad's are under a lot of stress and need understanding

not criticism or denial e.t.c. but I am too scared to give it to

them! It may look as a personal attack on them as grandparents. But

everything in it is true.

Autistic spectrum disorders do run in families, but in your son's

case it sounds more like the microcephaly has something to do with it.

My girls were extremely premature and the autism has been attributed

to abnormal brain development due to prematuriy. It is much more

common in premature infants.So there can be a physical cause although

causes are not fully understood. The brain injury /brain development

idea has been in the newest books I have read.

I have had problems with toileting. My daughter is 5 and will not do

poos on the toilet. She has full control just won't use the toilet.

My daughter also strips off her clothes in Public, hates going most

places and has huge tantrums. She also plays well which made

diagnosis difficult. She also suffers extreme anxiety.

There are some similarities between your son and My daughter.

Maybe he is high functioning autism or aspergers.

Good on you for writing to all the family. Break the taboos! I wrote

to my grandmother too.

karen xxx

> >

> Hello Jane,

> Welcome to the group. I'm sure you will get the info you need here.

> My daughter was nearly diagnosed PDD as she does play well and

> doesn't have repetitive movements but she ended up with a diagnosis

> of autism.

> Did the specialists ever consider fragile X syndrome in their

> diagnosis of Caleb. I only ask because microcephaly can be a

symptom

> of fragile X and this condition has other symptoms similar to

> Autistic spectrum disorders.

> Having said that I am no expert , just the microcephaly made me

> think " Fragile X " .

> I know about the feeling dazed thing when a diagnosis is first

given.

> it is certainly a lot to deal with .

> I wish you and Caleb and the rest of your family all the best in

> dealing with this.

> xxx

>

> > Hello,

> > I just wanted to introduce myself. My name is Jane. My husband

> (Tony)

> > and I have three children; (17), Caleb (4) and Hannah (1).

> >

> > When Caleb was 9 mos old the circumference of his head had not

> > changed at his well visit. Same thing at 1. We began a medical

> > journey through evaluations. He was diagnosed isolated

> microcephaly.

> > He had no developmental delays until his third birthday. I was

> > expecting Hannah so we attributed his odd behaviors to the

arriving

> > baby.

> >

> > After a while I noticed the behaviors weren't stopping. I was a

> > social worker who worked with foster children that had special

> needs.

> > Not too many of them had autism but I began to suspect Caleb

might

> > have a mild case. He just finished his evaluations yesterday and

> was

> > diagnosed PDD, nos. The evaluator suspects his scores may be

> higher

> > but because he stays home with me the peer social peice of the

> > evaluation was missing. One miracle that came out of the

> evaluations

> > is that his head grew this past year and he is no longer

> > microcephalic. We had many people praying for Caleb.

> >

> > I had planned to homeschool my children. Now he will be beginning

a

> > full day intensive intervention program. I feel a little bit

dazed.

> > Suspecting issues is one thing; begining a whole life style of

> > interventions so quickly is a little bit nerve wracking.

> >

> > I feel like there is TOO much information out there and it is

> > contradicting so I am overwhelmed. What treatments are best? What

> > about food allergies? feingold diet, fish oils. It is all so

> > overwhelming on top of the day to day overwhelmingness of

parenting

> > Caleb.(who is the absolute joy of my life.)

> >

> > Anyway, I have written too long. I just wanted to introduce

myself.

> I

> > am hoping for some insight and feedback.

> >

> > Thank you,

> > Jane

>

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

>

January 31, 2005

Hi again Jane,

I was just researching Angelman syndrome and I agree , it doesn't

sound like your son.It sounds like a very profound delay. Your son

sounds more capable from what you describe,

xxx

> > >

> > Hello Jane,

> > Welcome to the group. I'm sure you will get the info you need

here.

> > My daughter was nearly diagnosed PDD as she does play well and

> > doesn't have repetitive movements but she ended up with a

diagnosis

> > of autism.

> > Did the specialists ever consider fragile X syndrome in their

> > diagnosis of Caleb. I only ask because microcephaly can be a

> symptom

> > of fragile X and this condition has other symptoms similar to

> > Autistic spectrum disorders.

> > Having said that I am no expert , just the microcephaly made me

> > think " Fragile X " .

> > I know about the feeling dazed thing when a diagnosis is first

> given.

> > it is certainly a lot to deal with .

> > I wish you and Caleb and the rest of your family all the best in

> > dealing with this.

> > xxx

> >

> > > Hello,

> > > I just wanted to introduce myself. My name is Jane. My husband

> > (Tony)

> > > and I have three children; (17), Caleb (4) and Hannah (1).

> > >

> > > When Caleb was 9 mos old the circumference of his head had not

> > > changed at his well visit. Same thing at 1. We began a medical

> > > journey through evaluations. He was diagnosed isolated

> > microcephaly.

> > > He had no developmental delays until his third birthday. I was

> > > expecting Hannah so we attributed his odd behaviors to the

> arriving

> > > baby.

> > >

> > > After a while I noticed the behaviors weren't stopping. I was a

> > > social worker who worked with foster children that had special

> > needs.

> > > Not too many of them had autism but I began to suspect Caleb

> might

> > > have a mild case. He just finished his evaluations yesterday

and

> > was

> > > diagnosed PDD, nos. The evaluator suspects his scores may be

> > higher

> > > but because he stays home with me the peer social peice of the

> > > evaluation was missing. One miracle that came out of the

> > evaluations

> > > is that his head grew this past year and he is no longer

> > > microcephalic. We had many people praying for Caleb.

> > >

> > > I had planned to homeschool my children. Now he will be

beginning

> a

> > > full day intensive intervention program. I feel a little bit

> dazed.

> > > Suspecting issues is one thing; begining a whole life style of

> > > interventions so quickly is a little bit nerve wracking.

> > >

> > > I feel like there is TOO much information out there and it is

> > > contradicting so I am overwhelmed. What treatments are best?

What

> > > about food allergies? feingold diet, fish oils. It is all so

> > > overwhelming on top of the day to day overwhelmingness of

> parenting

> > > Caleb.(who is the absolute joy of my life.)

> > >

> > > Anyway, I have written too long. I just wanted to introduce

> myself.

> > I

> > > am hoping for some insight and feedback.

> > >

> > > Thank you,

> > > Jane

> >

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

> >

January 31, 2005

Hi ,

I read on someone's post, may have been yours that they used a picture schedule. Never heard of that. What I do with Caleb is this;

I went to HOME DEPOT and got counter top samples. They each have a round hole in the top. I picked out the brightest ones. I drew his morning schedule, one on each chip. I put them on a silver key ring. Now he starts with his first chore than flips the chip over. The last chip is a barney sticker. When he gets his jobs done he watches Barney. This "hands on" consistent routine works. It keeps me out of his responsibilities and reduces the fight. If it is not done, he doesn't watch t.v. period. (and the stuff was free!) Is this a picture schedule?

Sometimes I use the timer to get him to transition. "OK, we are leaving when the timer dings, do what you need to do and pack what you need to pack." this is new and not always working yet. Often it takes me and my husband to get on the winter coats and put him in the car while he is kicking, screaming and running away.

I just spent my day calling the school system to get him services. I am exhausted. They referred me to more people than I thought were in the phone book!It looks like it may take two weeks before they even get him in for an initial evaluation and then they plan to send him to one school for 6 weeks for evaluations before determining which school to send him too!

This is a child who can not handle transitions!

Now I am praying hard because this is not a good begining.

I agree about angelmans.

The thing about angelman syndrome that we don't know (and no doctor has been able to answer) is if it is a spectrum disorder. He is and has always been extremely happy (except when he is transitioning or having to take clothes off or on)

His gait is unsturdy when he runs, other things too like a misdiagnoses of autism. They say that angelman children have autistic traits but are socially interested. That is Caleb. He is excited to be with people, see them and loves to hug and cuddle. His development was normal until about a year ago. Now I am being told that is symptomatic of aspergers. (higher functioning, interested in social things but not real good at it, and no speech delays until after 3).

I guess it is going to be a "process". We'll just take what we get and build on to what ever strengths we can build on. I am trying to teach myself not to take too seriously the diagnoses; to just use it to get services to see him grow. I spent two years with him in MRIs; xrays;blood tests; all kinds of specialists because of his microcephaly. Now they tell me he is no longer microcephalic and they don't know why. A lot to put a little boy through (and his family) for nothing.

Jane

-friends call me Kaz *** <dollcrazy@...> wrote:

Hi again Jane,I was just researching Angelman syndrome and I agree , it doesn't sound like your son.It sounds like a very profound delay. Your son sounds more capable from what you describe, xxx> > > > > Hello Jane,> > Welcome to the group. I'm sure you will get the info you need here.> > My daughter was nearly diagnosed PDD as she does play well and > > doesn't have repetitive movements but she ended up with a diagnosis > > of autism.> > Did the specialists ever consider fragile X syndrome in their > > diagnosis of Caleb. I only ask because microcephaly can be a > symptom > > of fragile X and this condition has other symptoms similar to > > Autistic spectrum disorders.> > Having said that I am no expert , just the microcephaly made me > > think "Fragile X".> > I know about the feeling dazed thing when a

diagnosis is first > given. > > it is certainly a lot to deal with .> > I wish you and Caleb and the rest of your family all the best in > > dealing with this.> > xxx> > > > > > > > > Hello,> > > I just wanted to introduce myself. My name is Jane. My husband > > (Tony) > > > and I have three children; (17), Caleb (4) and Hannah (1).> > > > > > When Caleb was 9 mos old the circumference of his head had not > > > changed at his well visit. Same thing at 1. We began a medical > > > journey through evaluations. He was diagnosed isolated > > microcephaly. > > > He had no developmental delays until his third birthday. I was > > > expecting Hannah so we attributed his odd behaviors to the > arriving > > > baby. > > > > > >

After a while I noticed the behaviors weren't stopping. I was a > > > social worker who worked with foster children that had special > > needs. > > > Not too many of them had autism but I began to suspect Caleb > might > > > have a mild case. He just finished his evaluations yesterday and > > was > > > diagnosed PDD, nos. The evaluator suspects his scores may be > > higher > > > but because he stays home with me the peer social peice of the > > > evaluation was missing. One miracle that came out of the > > evaluations > > > is that his head grew this past year and he is no longer > > > microcephalic. We had many people praying for Caleb.> > > > > > I had planned to homeschool my children. Now he will be beginning > a > > > full day intensive intervention program. I feel a

little bit > dazed.> > > Suspecting issues is one thing; begining a whole life style of > > > interventions so quickly is a little bit nerve wracking.> > > > > > I feel like there is TOO much information out there and it is > > > contradicting so I am overwhelmed. What treatments are best? What > > > about food allergies? feingold diet, fish oils. It is all so > > > overwhelming on top of the day to day overwhelmingness of > parenting > > > Caleb.(who is the absolute joy of my life.)> > > > > > Anyway, I have written too long. I just wanted to introduce > myself. > > I > > > am hoping for some insight and feedback. > > > > > > Thank you,> > > Jane> > > > > > > > > > > > --------------------------------->

>

January 31, 2005

Hi Jane,

>>I went to HOME DEPOT and got counter top samples. They each have a round

>>hole in the top. I picked out the brightest ones. I drew his morning

>>schedule, one on each chip. I put them on a silver key ring. Now he starts

>>with his first chore than flips the chip over. The last chip is a barney

>>sticker. When he gets his jobs done he watches Barney. This " hands on "

>>consistent routine works. It keeps me out of his responsibilities and

>>reduces the fight. If it is not done, he doesn't watch t.v. period. (and

>>the stuff was free!) Is this a picture schedule?<<

Yes, that is a visual schedule. But when he gets older and can read words it

may still be necessary to either have it as pictures, or to have it as words

written down.

>>Sometimes I use the timer to get him to transition. " OK, we are leaving

>>when the timer dings, do what you need to do and pack what you need to

>>pack. " this is new and not always working yet. Often it takes me and my

>>husband to get on the winter coats and put him in the car while he is

>>kicking, screaming and running away.<<

Do you tell him that you are coming home again afterwards as well? It's very

common that they just do not realise (because it's implicit not explicit)

that an activity or an outing will have an ending and that they will return

home to their safe place.

in England

February 1, 2005

Hi Jane,

Someone else mentioned picture schedules. We use social

stories.Photos in a photo book about what's coming up to get her used

to things.

Your Barney idea on the keyring sounds like an excellent idea!

Hang in there , They will evntually get a diagnosis fpr caleb and

then you will know what it is you are dealing with. The hard part is

the not knowing. It can be a relief to get a diagnosis but mixed with

sadness. At least we know why our kids are like they are,

Best Wishes ,

xxx

> > > >

> > > Hello Jane,

> > > Welcome to the group. I'm sure you will get the info you need

> here.

> > > My daughter was nearly diagnosed PDD as she does play well and

> > > doesn't have repetitive movements but she ended up with a

> diagnosis

> > > of autism.

> > > Did the specialists ever consider fragile X syndrome in their

> > > diagnosis of Caleb. I only ask because microcephaly can be a

> > symptom

> > > of fragile X and this condition has other symptoms similar to

> > > Autistic spectrum disorders.

> > > Having said that I am no expert , just the microcephaly made me

> > > think " Fragile X " .

> > > I know about the feeling dazed thing when a diagnosis is first

> > given.

> > > it is certainly a lot to deal with .

> > > I wish you and Caleb and the rest of your family all the best

in

> > > dealing with this.

> > > xxx

> > >

> > > > Hello,

> > > > I just wanted to introduce myself. My name is Jane. My

husband

> > > (Tony)

> > > > and I have three children; (17), Caleb (4) and Hannah

(1).

> > > >

> > > > When Caleb was 9 mos old the circumference of his head had

not

> > > > changed at his well visit. Same thing at 1. We began a

medical

> > > > journey through evaluations. He was diagnosed isolated

> > > microcephaly.

> > > > He had no developmental delays until his third birthday. I

was

> > > > expecting Hannah so we attributed his odd behaviors to the

> > arriving

> > > > baby.

> > > >

> > > > After a while I noticed the behaviors weren't stopping. I was

a

> > > > social worker who worked with foster children that had

special

> > > needs.

> > > > Not too many of them had autism but I began to suspect Caleb

> > might

> > > > have a mild case. He just finished his evaluations yesterday

> and

> > > was

> > > > diagnosed PDD, nos. The evaluator suspects his scores may be

> > > higher

> > > > but because he stays home with me the peer social peice of

the

> > > > evaluation was missing. One miracle that came out of the

> > > evaluations

> > > > is that his head grew this past year and he is no longer

> > > > microcephalic. We had many people praying for Caleb.

> > > >

> > > > I had planned to homeschool my children. Now he will be

> beginning

> > a

> > > > full day intensive intervention program. I feel a little bit

> > dazed.

> > > > Suspecting issues is one thing; begining a whole life style

of

> > > > interventions so quickly is a little bit nerve wracking.

> > > >

> > > > I feel like there is TOO much information out there and it is

> > > > contradicting so I am overwhelmed. What treatments are best?

> What

> > > > about food allergies? feingold diet, fish oils. It is all so

> > > > overwhelming on top of the day to day overwhelmingness of

> > parenting

> > > > Caleb.(who is the absolute joy of my life.)

> > > >

> > > > Anyway, I have written too long. I just wanted to introduce

> > myself.

> > > I

> > > > am hoping for some insight and feedback.

> > > >

> > > > Thank you,

> > > > Jane

> > >

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

> > >

February 7, 2005

Hello !

Welcome to the group!! There is a

tonne of information here, so look around. If you have any questions,

please ask!!

I live in Chilliwack, BC, about an hour and a

half east of Vancouver. I had my surgery in September, in Vancouver, and feel pretty much

back to normal. At a certain point, I was told I had to wait upwards of 3

years for my surgery, because of our great Canadian Health Care system.

This is when I met , from Calgary, on this site.

He had the surgery a hear before me, by

Dr. Grondin in Calgary. He feels great. I am going to email him your post, as

he does not check the site anymore. I am sure he will be more than happy

to reply to you, and tell you his doctors info, etc. There a

great surgeons out there, you just have to look. DO not go with the first

surgeon referred to you, right away! Do your homework.

I will email him right away!!! Again,

welcome to the group!! Post away!

22

Chilliwack, BC

just

diagnosed

Hello to all. I was just diagnosed with achalasia

and am wondering if

any one or all have an enlarged esophagus due to

the LES not

opening. I live near Edmonton, Alberta and

am wondering if anyone

out there may know of a doctor who actually knows

anything or has had

any successful surgeries. I beleive that I

know just as much as some

of the doctors if not more about this condition. I

have my suspicions

that it may have something to do with a previous

condition that I had

called sarcoidosis, it is something to do with

your immune system. I

have some granuloma in my stomache supposedly due

to this and

therefore they suspect there may be a link. Anyone

out there heard of

this?

Have a great day

February 7, 2005

> Hello !

>

> Welcome to the group!! There is a tonne of information here, so

look

> around. If you have any questions, please ask!!

>

> I live in Chilliwack, BC, about an hour and a half east of

Vancouver. I

> had my surgery in September, in Vancouver, and feel pretty much

back to

> normal. At a certain point, I was told I had to wait upwards of 3

years

> for my surgery, because of our great Canadian Health Care system.

This

> is when I met , from Calgary, on this site.

>

> He had the surgery a hear before me, by Dr. Grondin in Calgary. He

> feels great. I am going to email him your post, as he does not

check

> the site anymore. I am sure he will be more than happy to reply to

you,

> and tell you his doctors info, etc. There a great surgeons out

there,

> you just have to look. DO not go with the first surgeon referred to

> you, right away! Do your homework.

>

> I will email him right away!!! Again, welcome to the group!! Post

away!

>

> 22

>

> Chilliwack, BC

> Thanks for the quick response, I appreciate any info or help that I

can get.

Have a great day

>

> just diagnosed

>

> Hello to all. I was just diagnosed with achalasia and am wondering

if

> any one or all have an enlarged esophagus due to the LES not

> opening. I live near Edmonton, Alberta and am wondering if anyone

> out there may know of a doctor who actually knows anything or has

had

> any successful surgeries. I beleive that I know just as much as

some

> of the doctors if not more about this condition. I have my

suspicions

> that it may have something to do with a previous condition that I

had

> called sarcoidosis, it is something to do with your immune system.

I

> have some granuloma in my stomache supposedly due to this and

> therefore they suspect there may be a link. Anyone out there heard

of

> this?

> Have a great day

>

February 8, 2005

Hi , Welcome to the group.

You are right sarcoidosis can be a cause. If this is so you would have

secondary achalasia. Do ask about that and let us know. Look at the link

Maggi gave today for laparoscopic surgery and you will see they mention it

there.

An enlarged oesophagus is the result of a poorly functioning LES over a

period of time and probably every one gets there eventually - if they don't

have successful treatment. Early treatment of the spastic LES (Dilatation

and Heller's myotomy) will delay this, but for how long I don't know. An

enlarged oesophagus may affect the outcome of surgery and people with an

enlarged oesophagus are more likely to have a failed myotomy. I tell you

this - not to discourage you from having one, but so that you are prepared

for the fact of life.

I was not told anything about achalasia and after surgery when I was not

'cured' as I was led to expect I was very angry and depressed.

You never stop learning about A, but I do agree we often know much more than

the doctors !

Good wishes,

Joan

Johannesburg

South Africa

just diagnosed

>

> Hello to all. I was just diagnosed with achalasia and am wondering if

> any one or all have an enlarged esophagus due to the LES not

> opening. I live near Edmonton, Alberta and am wondering if anyone

> out there may know of a doctor who actually knows anything or has had

> any successful surgeries. I beleive that I know just as much as some

> of the doctors if not more about this condition. I have my suspicions

> that it may have something to do with a previous condition that I had

> called sarcoidosis, it is something to do with your immune system. I

> have some granuloma in my stomache supposedly due to this and

> therefore they suspect there may be a link. Anyone out there heard of

> this?

> Have a great day

>

March 15, 2005

Hello Dawn and welcome to the group!

I found myself in a similar situation when I was dianosed last fall.

Unless your specialist came highly recommended, or you have no other

options, searching for another specialist is not a bad idea. You can

keep your current appt as a 2nd opinion appt. Try searching

for " Americas Best Doctors " , and then go to your location, specialist

type (otologist) and drill down till you find someone nearby with a

good rep. Also consider the hospital they are affiliated with (can

also search " Americas Best Hospitals " and drill down to this

specialty. Can pop into the nearest and Nobels and pick up

the latest issue of the above titled books too........

Good Luck! And keep us posted.

Bettie in NJ

>

> Went to my second specialist last Tuesday, and was diagnosed with c-

toma. I've been reading up on it quite a bit, and came across this

group. I had my CT Scan on Friday, but I now have to wait until

April 18th to get my test results, since my doctor is out of town

and/or booked until then. Urgh! He is the only doctor in his

office, so I'm feeling a bit stuck. I think I'm going to try to find

another specialist in the area…just because I don't think I can wait

5 weeks to find out! What do you guys think? Anyone happen to know

any good specialists in Denver, CO?

>

> Thanks!

March 15, 2005

Here is the home page for the American Otological Society. There is a link to a PDF containing the names of all the members. I would guess that this is a VERY good reference to qualified Docs.

http://otology-neurotology.org/AOS/AOS-home.html

Jeff

Re: Just diagnosedHello Dawn and welcome to the group!I found myself in a similar situation when I was dianosed last fall. Unless your specialist came highly recommended, or you have no other options, searching for another specialist is not a bad idea. You can keep your current appt as a 2nd opinion appt. Try searching for "Americas Best Doctors", and then go to your location, specialist type (otologist) and drill down till you find someone nearby with a good rep. Also consider the hospital they are affiliated with (can also search "Americas Best Hospitals" and drill down to this specialty. Can pop into the nearest and Nobels and pick up the latest issue of the above titled books too........Good Luck! And keep us posted.Bettie in NJ> > Went to my second specialist last Tuesday, and was diagnosed with c-toma. I've been reading up on it quite a bit, and came across this group. I had my CT Scan on Friday, but I now have to wait until April 18th to get my test results, since my doctor is out of town and/or booked until then. Urgh! He is the only doctor in his office, so I'm feeling a bit stuck. I think I'm going to try to find another specialist in the areaâ€¦just because I don't think I can wait 5 weeks to find out! What do you guys think? Anyone happen to know any good specialists in Denver, CO?> > > > Thanks!

March 16, 2005