New member

[Guest guest]

, Thanks, I'll check into it although from my one short

experience with dexamethasone, I would much rather take Spiro for the

rest of my life than that stuff!!

Fran

> Fran

> GRA is Gluco-corticoremedial Aldostronism, I know I spelled that

> wrong. It is a type of hyperaldo that is genetic. I was the first

> known case in my family although the doctors feel that someone in

our

> family may have had it and died a long time ago and it was just

> written off to some other cause. The best thing about this type is

> that you can test for it in a blood test that is sent to Yale. It

is

> also Dexamethesone suppressible. Which means that you may be able

to

> normalize BP and aldostrone by taking a very small dose of dex for

> the rest of your life. It is refered to as PA-II or GRA. (primary

> aldostronism type II) Most doctors have never heard of it but my

> daughters doctor is in on that study with Dr Lifton of Yale

Genetics.

> There are several articles on a site called PUBMED, you may have to

> imput aldostrone first, then look for articles dealing with GRA or

> familial hyperaldo. , When you locate one it the related articles

> link and then it will pull like 100 artlicles up. Read through

them

> some are over our heads but others are not. I hope this helps

some.

> W

[Guest guest]

Welcome Ross,

That's makes three, (Ross's I mean)

Yep you did indeed meet me but as you say that was at least one

refresher ago !

Anyway welcome to the group, things are pretty quiet at the moment but

there is usually some sort of meaningful discussion going on, you just

need to wait to see it :-)

Anyway welcome again

- Enjoy !

Best Wishes

Ian

New Member

<snip>

As you have just subscribed to our little community I guess you must

have some interest in Remote Medicine or Medic's in general.

To that end I would like to ask you to post a quick message to the list

(egroups), that introduces who you are and what

you do, It doesnt need to be lengthy just a quick hello and brief

intro... </snip>

Well, guess I'd better do so!

My name is Ross , and I'm currently working as an Offshore Medic

on an FPSO in the North Sea.

I

[Guest guest]

Welcome! What part of land are you from? There is a good support group in

the Frederick area and also the Chesapeak area. One of the best DS clinics is

at Kennedy Krieger/s Hopkins in Baltimore.

I didn't know ahead of time, but from those that did, they are able to be

prepared and can work out some of the grief issues we all face before the baby

comes.

, praying for no rain so can play baseball today!

New member

My wife and I were just advised that our son will have DS. Currently

she is 5 1/2 months. We are interested if anyone or a group ,is from

the land Area that meets or anyone to speak with about what to

expect. We are determined to make this work and provide our child the

best life possible.

[Guest guest]

Could you tell me how to get on the PODS-NO_VA list? I was given a

contact name for this group at the hospital and from my pediatrician - I

called a few times and left messages but got no response. I am

interested in making some contacts - I am in Fredericksburg which is a

little bit south but doable for me. I haven't met anyone yet with a

child with Down's. Thanks for any info

Michele

New member

My wife and I were just advised that our son will have DS. Currently

she is 5 1/2 months. We are interested if anyone or a group ,is from

the land Area that meets or anyone to speak with about what to

expect. We are determined to make this work and provide our child the

best life possible.

[Guest guest]

What part of land are you in? There is a large network of parents of

kids with Down Syndrome in the DC-Northern Virginia area. They also have an

email list, PODS-NO_VA. , the founder of this listserv, is a little

further west of DC, and probably would cross the Potomac at White's Ferry.

and I both take our sons to s Hopkins every month or so. If you

are closer to Baltimore, I would be glad to meet you when I'm in the area.

There is another active parent in our group who lives near Cumberland, MD.

In fact, he is the organizer of our annual get-together . I am forwarding

you his email about this event (called the " Suaree " --but that " s another

story) as an invitation to join us on June20-22. Kent would most certainly

invite you himself if he had found your email before I did. This could be a

wonderful opportunity for you to see a lot of children with Down Syndrome at

variety of ages and levels of function, plus have simultaneous access to

many parents who would be glad to answer questions.

As you adjust to the idea of having a child with Down Syndrome, you

should know that the unanimous belief of this group is that, in spite of any

problems or heartaches, having a child with Down Syndrome yields many joys

that most people never get to experience. In other words we are especially

blessed.

Bev

New member

My wife and I were just advised that our son will have DS. Currently

she is 5 1/2 months. We are interested if anyone or a group ,is from

the land Area that meets or anyone to speak with about what to

expect. We are determined to make this work and provide our child the

best life possible.

[Guest guest]

Congratulations!!!!! You've made a very important first step by researching.

You will find this list a very supportive, informative place.

I found out at 7 months that my daughter has Down syndrome. I did the same

as you....sought out information.

The most important thing I can tell you is to celebrate the birth of your

new baby!! Will he be your first? Any names picked out? We love new babies

on this list!!!

Welcome.

Sue mom to Kate 13 and Karrie 7 w/ds

[Guest guest]

Exactly Bev!!! couldn't have expressed it better myself!

Judi

As you adjust to the idea of having a child with Down Syndrome, you

should know that the unanimous belief of this group is that, in spite of any

problems or heartaches, having a child with Down Syndrome yields many joys

that most people never get to experience. In other words we are especially

blessed.

Bev

[Guest guest]

. I belong to the Chesapeake DS Parent Group. We are going to the picnic

next Sunday :-)

Judi

[Guest guest]

I'm so glad to hear that you are encouraging parents to place their children

with sp needs in Headstart. When Maverick was 3 we chose to place him in

Headstart instead of in the self-contained program that the public school had to

offer. It was a very horrible experience. They fought us all the way. They

wouldn't accept him because he wasn't toilet trained, needed an aide, didn't

speak, you name it they used it. I did my homeworker and he ended up in the

Headstart, but was treated rudely. We filed complaint after complaint with the

state to get things such as bussing, an aide, therapies to take place in his

Headstart setting.

We moved out of the district because I didn't want to spend the next 13 yrs

fighting for inclusion. So then, we moved into a more open minded district and

still had to file a due process to have Maverick fully included in regular

education. LOL.

Oh well, here we are heading for Jr. High and still included.

Headstart is a wonderful program that IS supposed to included a percentage of

sp needs children and hopefully there are more with people like you working

in them to help our kids!

[Guest guest]

In a message dated 6/1/2003 8:53:58 PM US Mountain Standard Time,

leslie-kerrigan@... writes:

> the Headstarts around

> here try to fill these spots with kids with " easy " IEPs (like for speech

> problems)

Yes. When we brought in documentation that Headstarts had to have a

percentage of sp needs children, they told us that was for kids who had ADD!!!!

[Guest guest]

We definitely have plenty of each! Welcome aboard!

Judi - Mom to Jordan (7) Ds and Savannah (7 mos) NDA

New Member

I look forward to

excellent discussions and fun!

--Inspire

[Guest guest]

We have a super headstart where neither of the teachers have worked with a

child with ds at this particular school. I may but kristen there. It depends

on how i can arrange the therapies. The classroom time is only 2 1/2 hours.

She get 9 1/2 hours therapy sessions per week. Almost 2 days of classroom

time. Hoping to find 5 hour inclusion or intergrated pre-k

Maureen

Mom to

8yr nda

3y ds

a 1y

Jillian 3/12/03

[Guest guest]

>

>

>Headstart is a wonderful program that IS supposed to included a percentage of

>sp needs children ........

>

>

We were told by our Early Intervention folks when were were considering

transition options that although this is true, the Headstarts around

here try to fill these spots with kids with " easy " IEPs (like for speech

problems) rather then kids that have a variety of special needs. They

told us we could try if we wanted, but be prepared for a fight.

, mom to (7), (5 DS), and (3)

[Guest guest]

Think about this ..... who says they have to STOP accepting kids once they reach

their quota? That's the minimum number of kids but it shouldn't be the maximum?

I would contact OCR if Head Start turned me away because they had their

" numbers " filled.

Cheryl in VA

In a message dated 6/1/2003 11:33:45 PM Eastern Standard Time, Michdock writes:

> When we brought in documentation that Headstarts had to have a

> percentage of sp needs children, they told us that was for

> kids who had ADD!!!!

>

[Guest guest]

Marit, Please get some more information on vaccines before you do any more

damage! Check out my website OK? I have a page with a ton of other links as

well.

All the best,

" Parents should decide through informed choice, which vaccines if any should

be

given to their children "

<A HREF= " http://www.vaccinetruth.org/ " > Vaccine Information</A>

[Guest guest]

Hi Marit. Welcome to the group! My opinion, as well as the vast majority

of others on this list, is that no vaccines are necessary. You have to do

what makes you feel comfortable, but there is no need to rush into

anything. There is time to research and this group is a great place to

start. To answer your questions, I would not give the MMR. If you must give

the vaccines, it is thought that giving them separately is safer but there

are still many reactions with the single vaxes too. Mumps is a mild

disease. In rare cases it can cause orchitis in adult males and that will

usually only affect one testicle. Even if the vaccine is given in

childhood, it is likely that immunity wears off by the time they are an

adult anyway. It would have been much safer to get the disease as a child.

Again, if you must give the vaccines then you should spread them out a

couple months at a time. The MMR does not contain mercury, but it still

contains sorbitol, neomycin, gelatin. The measles and mumps are grown on

chick embryos (which is obviously a problem in egg-sensitive children) and

the rubella vax contains human diploid cells from aborted human fetal

tissue.

Make sure you ask lots of questions and read all you can. Like I said

before, there is no reason to rush into any decision right now.

Jodi

vaccineinfo@tesco

.net

vaccinations

cc:

06/03/03 01:11 PM Subject: New

member

Please respond to

Vaccinations

Hi!

I've been a member of the IS group for several months - my 13 month old son

was dx with the illness at 4 months. Recently, I've also joined the Mito

group, as our neuro's thoughts have wondered in that direction. I saw a

recommendation on your group in one or the other...

Just this month we have restarted giving Dan his vaccinations. We can't

give

him the Pertussis, so that dilemma is irrelevant for us. I am mostly

interested in 3 other issues:

1. When should I give him the MMR - 18 months, 2 years, 6 years??? And

should I try to split it up? If I do, how impo is Mumps? I live in Israel

and I think only Rubella and Measles are available separately here, so if I

insist on Mumps, I'll probably have to go the MMR route.

2. Should I try to break up the vacs as much as possible? Given the

preservatives and possible use of Mercury - will this be more or less of a

strain on his system?

3. How should I space the various vacs? If I gave him the Hib last week,

when should I give him the Polio?

Thanks,

Marit

[Guest guest]

Hi Marit, welcome to the list. I belong to a list called Meta-mito-

autism. I don't know what illness your son has been diagnosed with?

But, please ask any questions about immunizations and your son's

particular illness. There isn't any such thing as a safe vaccine.

Please research each vaccine separately, and again, ask any

questions. Like Jodi has already mentioned, I don't believe anyone on

this list would recommend any vaccines.

http://www.childscreen.org

> Hi!

>

> I've been a member of the IS group for several months - my 13 month

old son

> was dx with the illness at 4 months. Recently, I've also joined the

Mito

> group, as our neuro's thoughts have wondered in that direction. I

saw a

> recommendation on your group in one or the other...

>

> Just this month we have restarted giving Dan his vaccinations. We

can't give

> him the Pertussis, so that dilemma is irrelevant for us. I am mostly

> interested in 3 other issues:

> 1. When should I give him the MMR - 18 months, 2 years, 6 years???

And

> should I try to split it up? If I do, how impo is Mumps? I live in

Israel

> and I think only Rubella and Measles are available separately here,

so if I

> insist on Mumps, I'll probably have to go the MMR route.

> 2. Should I try to break up the vacs as much as possible? Given the

> preservatives and possible use of Mercury - will this be more or

less of a

> strain on his system?

> 3. How should I space the various vacs? If I gave him the Hib last

week,

> when should I give him the Polio?

>

> Thanks,

> Marit

[Guest guest]

My motto is, " Vaccine free is the only way to be. "

Welcome Marit. And I do agree that you need to research the vaccine issue.

This is a great group and they can give you a lot of info. and support.

Lynda

Re: New member

Hi Marit, welcome to the list. I belong to a list called Meta-mito-

autism. I don't know what illness your son has been diagnosed with?

But, please ask any questions about immunizations and your son's

particular illness. There isn't any such thing as a safe vaccine.

Please research each vaccine separately, and again, ask any

questions. Like Jodi has already mentioned, I don't believe anyone on

this list would recommend any vaccines.

http://www.childscreen.org

> Hi!

>

> I've been a member of the IS group for several months - my 13 month

old son

> was dx with the illness at 4 months. Recently, I've also joined the

Mito

> group, as our neuro's thoughts have wondered in that direction. I

saw a

> recommendation on your group in one or the other...

>

> Just this month we have restarted giving Dan his vaccinations. We

can't give

> him the Pertussis, so that dilemma is irrelevant for us. I am mostly

> interested in 3 other issues:

> 1. When should I give him the MMR - 18 months, 2 years, 6 years???

And

> should I try to split it up? If I do, how impo is Mumps? I live in

Israel

> and I think only Rubella and Measles are available separately here,

so if I

> insist on Mumps, I'll probably have to go the MMR route.

> 2. Should I try to break up the vacs as much as possible? Given the

> preservatives and possible use of Mercury - will this be more or

less of a

> strain on his system?

> 3. How should I space the various vacs? If I gave him the Hib last

week,

> when should I give him the Polio?

>

> Thanks,

> Marit

[Guest guest]

Welcome. Congrats on the keeping off 40.

NH

Mommy to Abby Liz 10-25-94

Mommy to Anne 7-1-99

[Guest guest]

Are you able to get to the archives (I don't know how to do that, myself --

Doug?)? We've had a lot of discussion over the last month or so about the

questions you're asking.

Ann

new member

Hello everyone..im a new member. I don't personally know anyone else

with chrondromalacia so i figured it would be nice to get some info

from people that have to deal with it. Im 20 years old and have had

it since I was about 16. The Doc's didn't want to do anything at the

time but now im on a waiting list for surgery as it seems the

condition is geting worst. Have you all had surgery? if so...has it

made the condition any better? Thanks for your info!

[Guest guest]

Hi Paige:

I can only help you with some of your questions, since I am also new

to this condition. I will tell you that my barium test in November

was negative with presisting and increasing symptoms that led to

second test last month that showed possitive for birds beak as well

as positive for motility test. My symptoms have progressively

worsened in 7 months. Everything I have read suggest that lap

myotomy as being the definative course of action; but, I would

appreciate comments from those more experienced. Botox seems to be

only a transient treatment and I understatnd that it can make surgery

more difficult. Please forgive me, I am only relating what I have

most recently read and have not yet received treatment myself; so, I

hope others will commment.

> Hi All

>

> My name is Paige and about six weeks ago I was diagnoised with

> achalasia. Today I went to see the motility specialist here in the

> Dallas, TX area. He said that I do not have all the classic

> symptoms of achalasia. I have difficulty in swallowing, and chest

> pains. I have lost no weight, and my barrium swallow did not show

> the bird beak picture. He seems to think that I am just in the

> begining stages, and that with time it will get worse,however, he

is

> not positive. I still have nerve fuction in my esophagus, but it

> all moves at once instead of the wave like motion it should.

>

> He wants me to decide between doing nothing, having botox

> injections, or surgery. He also offered balloon dialation, but

with

> research I would rather just do the surgery. He is leaning

strongly

> with the botox. My husband and I are in the middle process of

> making our family. I have one 2 year old daughter and our plans

> have always been to have another child between her 3rd and 4th

> birthdays. I am worried about doing the botox, getting pregnant

> while it is in my system and then causing harm to an unborn child.

> Also, the thought of having botox, getting pregnant, and doing

> surgery with an infant in the house is not exciting either. My

> doctors will only do botox once and if it works they want to do the

> surgery.

>

> Does anyone have any thoughts or expeirecnes that might help me to

> decide? Anyone done botox and what were the results? How long did

> botox last. I have heard plenty of good about the surgery, but

does

> anyone have any bad stories to tell? I have a team of surgeons

that

> have done this surgery many times and I feel confident in their

> skills.

>

> Any input would be greatly appreciated. Please feel free to email

> me at res0x527@v... Thanks for just being there to

> understand.

>

> Paige

[Guest guest]

Welcome Paige. I started having symptoms of Achalasia

9 months before I was diagnosed. By that time I was

unable to keep down either food or water. I had two

Botox shots. At that time I knew little about the disease

or the treatments but was told Botox was more effective

in the older patients. I was 69 at the time. Neither

shot gave me any relief at all. I have heard members

here who did get some relief but it was short term.

Personally, if I had known when I had these shots what

I know today I would not take them.

I wish you well in whatever decision you make.

Maggie

Alabama

[Guest guest]

Hi Paige;

Welcome to the group. I just wanted to strongly recommend you ask a lot of questions before agreeing to the Botox. I haven't heard any positive comments from anyone in this group.

I have never had Botox, but could a few people who have had Botox please take a few moments to discuss the side effects.

Hope you get some answers, .

-- New Member

Hi AllMy name is Paige and about six weeks ago I was diagnoised with achalasia. Today I went to see the motility specialist here in the Dallas, TX area. He said that I do not have all the classic symptoms of achalasia. I have difficulty in swallowing, and chest pains. I have lost no weight, and my barrium swallow did not show the bird beak picture. He seems to think that I am just in the begining stages, and that with time it will get worse,however, he is not positive. I still have nerve fuction in my esophagus, but it all moves at once instead of the wave like motion it should. He wants me to decide between doing nothing, having botox injections, or surgery. He also offered balloon dialation, but with research I would rather just do the surgery. He is leaning strongly with the botox. My husband and I are in the middle process of making our family. I have one 2 year old daughter and our plans have always been to have another child between her 3rd and 4th birthdays. I am worried about doing the botox, getting pregnant while it is in my system and then causing harm to an unborn child. Also, the thought of having botox, getting pregnant, and doing surgery with an infant in the house is not exciting either. My doctors will only do botox once and if it works they want to do the surgery. Does anyone have any thoughts or expeirecnes that might help me to decide? Anyone done botox and what were the results? How long did botox last. I have heard plenty of good about the surgery, but does anyone have any bad stories to tell? I have a team of surgeons that have done this surgery many times and I feel confident in their skills. Any input would be greatly appreciated. Please feel free to email me at res0x527@... Thanks for just being there to understand.Paige

[Guest guest]

Ray, I had my first symptoms which were the spasms in

September 2000. I then immediately began to have

difficulty swallowing. By April 2001 I couldn't keep down

food or water. In July 2001 I had my first Botox shot

and had a 2nd one a month later. Neither helped me at

all. In September I had a dilatation. It worked real

good for about 18 months. I can still eat pretty good

but it is getting more difficult and I feel like the food

takes hours to get into the stomach. I still have spasms,

but they are usually pretty mild and most of the time

I can control them by drinking water. If that does not

work and they continue, then I will take some L'Arginine

but I do not take it on a regular basis.

I am kinda playing the wait and see game right now. I

hate to have anything done as long as I can get food

down. When I reach that point, unless something happens

to change my mind, I expect to have the myotomy done.

Maggie

Alabama

[Guest guest]

Maggie:

Read your post. How long have you had " A " and what was your course

of treatment? How are you doing now?

Ray

> Welcome Paige. I started having symptoms of Achalasia

> 9 months before I was diagnosed. By that time I was

> unable to keep down either food or water. I had two

> Botox shots. At that time I knew little about the disease

> or the treatments but was told Botox was more effective

> in the older patients. I was 69 at the time. Neither

> shot gave me any relief at all. I have heard members

> here who did get some relief but it was short term.

>

> Personally, if I had known when I had these shots what

> I know today I would not take them.

>

> I wish you well in whatever decision you make.

>

> Maggie

> Alabama