Ginny

[Guest guest]

Hi Ginny,

Thanks for explaining the fair hearing, yikes!!! I have enough trouble

fighting school nevermind the insurance co. I wish you the best. Let us know

how it goes.

Charlyne

Mom to Zeb 9 DS/OCD ?

[Guest guest]

Hi Ginny,

Have a great time in Baltimore. I hope enjoys it too.

Charlyne

Mom to Zeb 9 DS/OCD ?

[Guest guest]

In a message dated 8/9/2002 9:29:08 PM Central Daylight Time,

writes:

<<

Hi! Now I understand it all better. One in seven-hundred Caucasians

have a deficiency in IgA, defined as less than 5. Since your son has a

score of 33, he is not considered to be IgA deficient. The reason they

looked at it, is that in people with IgA deficiency, a signficant

number (up to 30%) have Celiac. So, the doctors were trying to see if

the Celiac was related to an IgA deficiency, and the answer is no, and

I'm sure the doctors will never bring up the IgA number again (nor

explain to you why they looked at it in the first place, but that's why

you have us).

Best wishes,

Ginny >>

Ginny,

Thank you for the info. It makes it so much easier to wait for the rest of

the tests. I hate when something is not " normal " but no one explains the

significance.

Karyn

[Guest guest]

In a message dated 8/10/02 7:48:11 AM Eastern Daylight Time,

KVanRyzin@... writes:

> Thank you for the info. It makes it so much easier to wait for the rest of

> the tests. I hate when something is not " normal " but no one explains the

> significance.

>

> Karyn

Karyn,

WAY back when we were running a kazillion tests on Maddie, her blood

levels indicated celiac too. Then the biopsy was negative, but the

endoscopy revealed a motility problem (GERD). Let us know when you

hear....{{{{{hugs}}}}}

Donna

[Guest guest]

In a message dated 8/12/2002 12:56:21 PM Eastern Daylight Time,

shapirov@... writes:

> I'm trying to keep an open

> mind, but so help me God, I absolutely ZERO sympathy or tolerance for a

> teacher who will not accept a special ed kid in her class (especially

> with a one on one aide to give him the individual attention). I

> believe in inclusion as much as possible, and that if teachers are

> unwilling to make adjustments for a special child, they shouldn't teach

> in the public schools!!

Hi Ginny,

I fight the attitude and battle every day. I truly agree and understand your

feelings.

Charlyne

Mom to Zeb 9 DS/OCD ?

[Guest guest]

In a message dated 8/13/2002 9:23:06 AM Eastern Daylight Time,

shapirov@... writes:

> Charlyne--you're near Bradley? My sister lives in New Hartford (tiny

> little nothing town near Torrington, but not too far from Bradley).

> Are you near there, or on the other side of Bradley. It's a four hour

> drive on a good day from here, and we don't get there all that often,

> maybe once a year. But, if you're near her, we could get together the

> next time I'm in the neighborhood...

>

Hi Ginny,

I am very familiar with New Hartford, LOL , we broke down there a few weeks

ago coming home from a fair outside of Torrington. I am on the other side of

the airport, closer to the Ma. line. I could drive to New Hartford, back

roads, of course, in about 45 min. I would love to meet you when your in the

area. I finish fair season in the beginning of Oct. Let me know. I have a

question that is certainly in your field. I have asked the drs but never seem

to get a real answer. Do most kids with DS have a compromised immune system?

It seems that when Zeb gets a cold, flu etc. he is sicker than the typical

child and the illness last longer. The drs explaination is that's just your

child but my gut knows differently. I will be away until tues. It is sooo hot

here but praying the fair has some sort of attendance with hungry people.

Charlyne

Mom to Zeb 9 DS/OCD ?

[Guest guest]

In a message dated 8/14/2002 12:57:31 PM Eastern Daylight Time,

shapirov@... writes:

> I'll be

> honest--I dont know how this is going to work, with me being my

> husband's boss.

Hi Ginny,

Sorry to heard about your dh's job. My dh works for me during fair season. It

can get tense at times but the nature of my business is just that, so. I

think both of you will do fine, good luck.

Charlyne

Mom to Zeb 9 DS/OCD ?

[Guest guest]

In a message dated 10/15/2002 3:34:50 PM Eastern Daylight Time,

shapirov@... writes:

> But I'm about to get real busy for the next month--

> the first year med students learn all of Immunology in this five week

> intensive course that meets almost every day, for up to four hours a

> day.

Hi Ginny,

Your course sounds quite intense but I bet your a great instructor. Just

think you'll have Disneyworld to think of to get you through it. Sounds like

great fun!

Charlyne

Mom to Zeb DS/OCD ?

[Guest guest]

Hi Ginny,

I used to write letters that were very factual and cut right to the chase. I

actually think I made a few enemies that way so I adopted this style when Zeb

was in first grade. It doesn't do me much good most of the time but it looks

nicer when I file my state complaints,LOL. I haven't meet with the principal

just spoke with him on the phone. He avoids me at all cost. The ed consultant

doesn't get involved in these issues only the ed piece. She is aware of the

situation but told me to handle it. I had a team meeting today and I think he

was locked down in his office. I am usually on top of all the sped procedures

but after awhile it just gets to be enough.

Charlyne

Mom to Zeb 10 DS/OCD ?

[Guest guest]

In a message dated 2/14/2003 12:21:10 PM Eastern Standard Time,

shapirov@... writes:

> I hope I'm not burning bridges, but at least this first year, I'll

> let them know what kind of Mom they are dealing with, so that we can

> avoid future " misunderstandings " . I think my district understands that

> I'm serious about 's education, and we'll see how the next IEP

> goes in May/June... I can't believe the principal didn't attend the

> meeting, but anyway, at the meeting, did you put in place a " what-to-

> do " list, if this happens again which starts with calling a meeting

> rather than a summary suspension? Did they erase the suspension from

> Zeb's records?

>

Hi Ginny,

My school and district knows that I am very serious about Zeb's education and

always have been. I wonder if they think if they cause me enough trouble I

may just get fed up and go away. The thought has crossed my mind many times.

The school has the to do list as specified in the behavioral plan. I have

given the principal until the end of February to respond, a reasonable time.

If he chooses not to revoke the suspensions, at that point, I will file a

state complaint. They can add that to my ever expanding list of complaints.

Charlyne

Mom to Zeb 10 DS/OCD ?

[Guest guest]

Hi Ginny,

The courts were unable to dismissed the charges as yet because the mother

insisted the courts prosecute. They have to have a competency hearing to insure

that they did everything so the case doesn't come back into the courts. I do

not advise anyone writing letters other than an editorial to the newspaper. I

did contact all of the above and more but was continually referred to the office

of protection and advocacy. I am waiting until the criminal court is

dismissed before the spec ed attorney files due process. He has already filed a

FERPA

complaint to Washington. Thanks for your support and pray that we prevail in

the courts. All eyes are on this right now.

Charlyne

Mom to Zeb 10 DS/OCD ?

[Guest guest]

Hi Ginny,

I have no help from anyone. Of course, I am a board member of the local ARC

and they are not pleased but what can they do. The state ARC has picked up the

article on it's web site. I haven't been notified regarding the competancy

hearing and I believe that it is attended by myself, Zeb's attorney and a

psychologist. It is a very private meeting. The psychologist will file his or

her

findings with the court and they proceed from there. People aren't knocking at

the door asking how they can help. There isn't anything any one really can do

right now.

Charlyne

[Guest guest]

Hi Ginny,

I think I could write a book about my experiences with spec ed! Zeb is just

smitten with Jo. She gave him one of her beanie babies and he carries it

around very often. Zeb had a great time with Gail and the kids. He is very

polite when he wants to be. I was disappointed that the court just didn't

dismiss

the charges but they willl at the next appearance. We waited forever in the

lobby for the case to be called. Zeb was so good. At the time I didn't think

this was so funny but having speech has it's drawbacks too. Zeb was sitting with

his attorney and he was talking loudly enough for everyone to hear him. He

leaned over to the criminal attorney and said did you know my mom takes drugs.

Everyone in the court lobby turned their heads toward me. I wanted to cry and

run. I don't take drugs yet. Just another day with Zeb. I never know what he is

going to say. I just came home from my dinner and sat with many spec ed

lawyers and ed consultants in the state. They are all wondering what me next

step

is going to be and are pleased with my spec ed attorney. They have all offered

their expertise in the event that she needs help. I feel that my school

battles were for a good reason and hopefully besides Zeb other children in the

district will benefit. More importantly, I would have never been able to cope

without this group. I am about 40 min. backroads from New Hartford.

Charlyne

Mom to Zeb 10 DS/OCD ?

[Guest guest]

I've had quite a few dilations since my ectomy also. I was fine the

next day as well. You may want to plan on softer foods for a few days -

I did great with scrambled eggs and chicken salad - because you may be

sore but nothing that tylenol won't help. I didn't even take any pain

meds, I just tried to take it kind of easy for a day or two with what I

ate.

It's a very common need to have a few done post-op - you're very

fortunate you haven't needed one before now.

good to hear from you!

- in NC

achalasia free since Jan. 11th