update

[Guest guest]

That's correct Mike..the Hospital isn't holding the meetings anymore.

I contacted Dr. K's office to try and help them find a new

location..figure heck Im a nurse, I know people, I have been to other

meetings so I know about how many people come, and Im HERE...but they

had already made arrangements to use the Assembly of God. We meet

here on the first Friday of each month..which is the 1st of

August..so unless they change it that was the last I heard about the

meeting. I suspect they will post a reminder to the board about the

meeting as they have the other meetings. If not, Dr. K has a 1-800

number listed on his website... http://www.gr-ds.com You can always

call them and ask. I am not sure where the Assembly of God is..I will

see what I can find out if you like and let you know.

Katharine

Ps..hope to see you there!

> > > > > > > WHILE I'M WAITING FOR APPROVAL FROM MY

> > > > INSURANCE

> > > > > > CO.

> > > > > > > I'VE BEEN PRACTICING MY BALLOON EXERCISE,

> > > > UPPER

> > > > > > BODY

> > > > > > > WORK AND IN MY SPARE TIME I'M DOING WATER

> > > > > > AEROBICS.

> > > > > > > WHILE AT MY WATER AROBICS CLASS MICHELLE

> > > > CALLED

> > > > > > AND

> > > > > > > LEFT A MESSAGE FOR ME TO CALL. WELL I

> > THOUGHT

> > > > I'LL

> > > > > > > GIVE HER A CALL AND SEE WHATS UP. MICHELLE

> > > > GAVE ME

> > > > > > THE

> > > > > > > NEWS I'VE BEEN WAITING FOR, BLUE

> > CROSS/BLUE

> > > > SHIELD

> > > > > > HAS

> > > > > > > GIVEN APPROVAL FOR MY GR-DS WITH DR. K. ON

> > > > AUG. 14

> > > > > > > I REALLY ENJOY READING ALL E-MAILS FROM

> > > > EVERYONE,

> > > > > > AND

> > > > > > > THE ANSWERS AND SUPPORT FROM EVERYONE.

> > > > > > > I KNOW I DON'T WRITE TO OFTEN, BUT I'LL

> > REALLY

> > > > TRY

> > > > > > TO

> > > > > > > KEEP EVERYONE UP TO DATE IN MY SITUATION.

> > > > > > >

> > > > > > > THANKS AGAIN GROUP

> > > > > > > MIKE K.

> > > > > >

> > > > > >

> > > >

> > > >

> >

> >

[Guest guest]

Yeee haaaa! Congratulations Mike!

Tracey

> MICHELLE GAVE ME THE

> NEWS I'VE BEEN WAITING FOR, BLUE CROSS/BLUE SHIELD HAS

> GIVEN APPROVAL FOR MY GR-DS WITH DR. K. ON AUG. 14.

>

> THANKS AGAIN GROUP

> MIKE K.

[Guest guest]

Hi Donna,

Thanks for the update. Glad to hear from you.

Prayers on the next med trial. Fingers crossed and I know you'll

share an update on this.

Glad you were able to entertain. Its always great to hear that you

made some time for events like this. Especially when relatives visit

from Holland. You are such a wonderful person this is why you're so

Blessed that everyone likes to make a point of the reunions. Someone

has to be on top of this to make things happen.

I can vaguely recall as next month approaches that its not over yet

for you as you have a get way with your birthday around the

corner.

Make sure you get some rest. Hugs!

Irma,15,ds/asd

[Guest guest]

In a message dated 8/22/2003 10:19:47 PM Eastern Daylight Time,

blessd8@... writes:

>

> IT is so hard to get news like this. I am praying that you adjust

> easily and quickly(as possible) to this new development in Kody's

> prognosis...that you are able to find hope, encouragement and

> strength for each day to come...

>

> Keep us up to date.

>

> Fisher

Thanks, . I think I'm slowly shifting from shock to research mode! LOL!

Now I trying to figure out how to best help Kody, it isn't going to be easy

that is for sure.

Diane

Life may not be the party we hoped for, but while we are here we might as

well dance!

[Guest guest]

Diane,

IT is so hard to get news like this. I am praying that you adjust

easily and quickly(as possible) to this new development in Kody's

prognosis...that you are able to find hope, encouragement and

strength for each day to come...

Keep us up to date.

Fisher

mom of Calvin, 2yo, XLA

also Christa, 4yo, undiagnosed MCA/MH(multi-congenital

anomaly/mental handicap)...still trying to figure her out

[Guest guest]

In a message dated 8/23/2003 7:05:00 AM Eastern Daylight Time,

rhmtce@... writes:

> I know all kids are different and that Kody has issues very different

> from Mike's but look at all things- depakote was a very bad drug for

> us in that it stole my child- and it took a long time to get him back.

> I hope this helps.

> Faye

>

>

You know, Faye, I don't know. When Kody first started having these problems,

his depakote level was the first thing looked at, and has been checked

frequently since. I've been told that his Depakote dosage is low, and his levels

remain low in blood tests. In the very begining when we first started Depakote,

Kody had some behavior changes, mostly with anger and fears. The dosage was

lowered and then that part got better. He is now on 125mg in the am and 250 mg

in

the pm. When I first brought my ped Kody's report card, another dep level was

done, and again the neurologist said it was a low level and wasn't the cause

of Kody's memory issues. I just don't know anymore. I am hoping that his new

eeg that is scheduled is done in the hospital and NOT at the neurologists

office. It was his first eeg that was done in the hospital that showed the spike

waves, his neuro has old eeg equipment. Granted it's in excellent shape, etc,

but

I just wonder about the new computer technology being more sensitive and

working better. I will definitely be mentioning everything you said to my ped

when

we pow wow next. Thanks!

Diane, Mom to Kody

[Guest guest]

Hi Diane~~

I read everything on this list, but admittedly have trouble keeping people

and facts straight. But aren't you the one who also has a thyroid problem? Have

you had Kody's thyroid checked? Maybe you've already addressed this, but as

someone with a thyroid problem myself, I know about memory problems, and of

course, you know that if you have the diagnosis, there's a chance your children

could have it also. Just a thought~~

Belinda

Lacey's mom, (15, CdLS, IgG deficiency)

Pittsburg, CA

<A HREF= " http://www.cdls-support.org/family/aug2001/index.html " >CdLS OSG:

Featured Family of August 2001</A>

[Guest guest]

-Hi Dianne

I'm fairly new to this list and don't know much about Kody however you

did post to one of my messages re my son having seizures. Did you tell

me that Kody was on Depakote. I'm not sure if it is relevant but my

son who has a severe seizure disorder was on depakote for over a year

at a very high dose. It didn't touch the seizures but it caused

terrible cognitive issues. He had an above average intelligence prior

to his seizures starting and depakote was one of the first drugs we

tried so very rapidly his cognitive level decreased. At first we

thought this was caused by the seizures but he also developed weird

stereotypical behaviors like hand flapping, toe walking and became

quite obsessive compulsive. He seemed very much like a child with

autism except he was very social. His memory was terrible and word

finding was a severe problem. He became toxic on the depakote- causing

liver problems and we had to wean him off it ( which was a chore in

itself) but as we did he started to become more like himself) He has

been off it for a year now and we no longer see the weird behaviors-

his memory is almost back to normal, and he is learning again. He is

delayed but making progress. All the while he still has seizures so I

know most of these issues were drug induced as opposed to seizure

induced.

I know all kids are different and that Kody has issues very different

from Mike's but look at all things- depakote was a very bad drug for

us in that it stole my child- and it took a long time to get him back.

I hope this helps.

Faye

[Guest guest]

Dear Diane,

It is so hard to hear put into words what has been an unnamed fear in our

brains, isn't it? My dh and I used to joke around and say, " It's like she

has no immune system. " We said that off and on for 24 months. But when we

were told the diagnosis, it was devastating. Not knowing is hard; I thought

that when we got a diagnosis, it would get easier. But, knowing was hard,

too, in a different way. And we grieved (are still grieving in some ways)

what the diagnosis means for our dd.

I'm so sorry that you have a new, named worry. I'm praying that God will

support you in this time of grieving.

Pam

wife to (16 years)

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

Rebekah has CVID and maybe some other stuff

Re: Update

Diane,

IT is so hard to get news like this. I am praying that you adjust

easily and quickly(as possible) to this new development in Kody's

prognosis...that you are able to find hope, encouragement and

strength for each day to come...

Keep us up to date.

Fisher

mom of Calvin, 2yo, XLA

also Christa, 4yo, undiagnosed MCA/MH(multi-congenital

anomaly/mental handicap)...still trying to figure her out

This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the

sole responsibility of the poster and should not be taken as professional

advice.

To unsubscribe -unsubscribegroups (DOT)

To search group archives go to:

/messages

[Guest guest]

Dear Sanford,never give up ..one of these medications(maybe two) will ease the

pain and help you.Never lose your hope...each is reacting differently to these

medications...I myself never get any benefit from predisone (it did wonders

for another friend, though) . My doctors prescribed 80 mgr every day and told

me that it would ease the pain (it has never worked)...Please be

hopeful..everything will be fine..just hang on pleaseEugenieFrom: Sanford

[mailto: sanford@...]stillsdisease@...: Sun, 07 Sep

2003 10:19:17 -0500Subject: updateWell lets see, in short, the

Dragon still has me in his grips. In long, I just got back from Mayo and found

out lots of new stuff about me. The dragon has held me in his grips since last

Nov., because of his grasp I have developed Pleurisy (am slowly receiving)

alittle bit of Paricartinitus, and now Type 2 diabetes from predisone, lucky me!

Tomorrow I start Remicade infusions, since Embrel & amp; Humira have not worked.

We will give this one 6 weeks, than its off to try Celcept. I hope one of these

finally works!Sanford

[Guest guest]

Good luck Sanford on your new treatment, sorry you have been so ill. I totally

understand!

Lynn

update

Well lets see, in short, the Dragon still has me in his grips. In long,

I just got back from Mayo and found out lots of new stuff about me. The

dragon has held me in his grips since last Nov., because of his grasp I

have developed Pleurisy (am slowly receiving) alittle bit of

Paricartinitus, and now Type 2 diabetes from predisone, lucky me!

Tomorrow I start Remicade infusions, since Embrel & Humira have not

worked. We will give this one 6 weeks, than its off to try Celcept. I

hope one of these finally works!

Sanford

[Guest guest]

Dear Sanford, just wanted to send the best hopes for you to feel better.

I'm sorry it's been a while that your feeling so bad. I do hope they find a

medication to help. Many hugs, Melt

----- Original Message -----

From: " Sanford " <sanford@...>

> Well lets see, in short, the Dragon still has me in his grips. In long,

> I just got back from Mayo and found out lots of new stuff about me.

[Guest guest]

Sanford,

we all care about you very, very much. Please know that we are here for you

and really understand what you are going through..honestly! Please, never

give up, just lean on us and we are here for you. I hope that you are

feeling better very soon friend.

Love, Sue #2

-- Re: update

Dear Sanford, just wanted to send the best hopes for you to feel better.

I'm sorry it's been a while that your feeling so bad. I do hope they find a

medication to help. Many hugs, Melt

----- Original Message -----

From: " Sanford " <sanford@...>

> Well lets see, in short, the Dragon still has me in his grips. In long,

> I just got back from Mayo and found out lots of new stuff about me.

[Guest guest]

Give my positive thoughts and best wishes -- of course the prayers

are already hers -- I hope she gets better quickly. Jo, you are a dear (again)

for checking on her and for updating us!

Hugs and blessings, Ann

[Guest guest]

> Hey groupies

>

> (Halle) called me today. She is not up to posting today

and

> She asked me to post requesting prayers, swinging chickens,

healing

> energy or just happy thoughts. She isn't as chipper today as she

> was...can't do her walks without getting dizzy. Dr. K ordered a

> couple more units of blood. She is frustrated that she isn't

doing

> as well as some. But I think she is also a bit scared.

>

> Keep her in your hearts...visit if your in the neighborhood, call

if

> you can afford the dime.

>

> Jo

************************************

jo- thanks for the update. she is in mu prayers. i didnt feel too

great in the hospital and the dizziness was awful. i know her

situation is different though and if you talk to her again, send

hugs for me.

vicki

[Guest guest]

HI ALICIA and all my switch sibs -

Congratulations on the terrific weight losss and feeling great! You are

doing GREAT!!! Everything sounds super! How is your eating? Any problems?

Are

you avoiding anything??

I am hopelessly behind on responding to posts and writing. But, I am working

on making time to keep in touch better with my switch siblings. I have been

super busy with work the last 5-6weeks. Of course that was right after we

FINALLY got our new kitchen up and running. I love it but, it sure was hard not

having a kitchen for 7weeks! I know it slowed down my weight loss.

I am feeling TONS better. A little frustrated with current plateau.

I am still losing a little hair (since about 3mos out).

I'm off 2 meds and the 3rd bp med is down from 200mg a day to 50mg a day!

Blood sugar is running around 95 fasting.

Cholesterol - 108. Potassium - tiny bit low. And, PTH - tiny bit high.

Dr. K said that it wasn't anything to be too concerned about - just work on

making sure I'm getting in vitamins - EVEERY single day. I'm good about the

morning - it's later in the day that I tend to miss.

Down from a tight 30-32 to 20 - I can fit in clothes from REGULAR stores! It

kinda bazaar. I haven't been able to shop in regular stores in about

20years! I don't want to spend a lot on clothes soo...... I look at Target, etc

- I

found a sweater and was shocked when the 2x I tried was too large and just had

to get a 1x!!!!!

Little things are a kick - like fitting in a booth at a resturant OR getting

into a car and being able to sit in ANY seat I want!!! Life is good

I still have problems with my BAD,BAD knees - I'll probably have to have

surgery on them one day.

It's great to be able to keep in touch with everyone! It is so very special

to be able to hear how everyone is doing, each of our challenges and successes

in this wonderful journey!

Big healthy hugs to all!

B in Santa

2/2002 - 343 highest

3/24/03 - 320 (Dr. K)

6/24/03 - 266 (-54)

9/24/03 - 238 (-82)

> Message: 18

> Date: Fri, 26 Sep 2003 16:14:20 EDT

> From: aliciatops@...

> Subject: 6 months update -

>

> Well, friends it seems to be encouraged around here to post updates.

> Here I am 6 months past my surgery date of 3-26-03.

>

> I was hoping to post my century club membership but didn't quite make

> That milestone but I am hoping to post that news in a few weeks.

>

> What have a lost? (and gained) with this surgery? So far...

>

> I have lost 94 pounds since the morning of surgery 355 to today's 261

> I started going to Curves at 10 weeks out I have lost 35 3/4 " since that day

>

> (I weighed 322 pounds) I wish I had taken some measurements at surgery day

> (*note to pre ops).

> I lost some hair But thankfully it really only lasted for a few weeks.

> I got to give up taking oral medications to control my blood sugars.

> I have a LOT less pain and numbness in my leg and hip. Unfortunately the

> Doctors don't think it will completely go away until perhaps after they

> remove my

> very large pannus.

> I have so much less heartburn and stomach issues.

>

> I have GAINED

> Energy, enthusiasm, a number of truly amazing " surgery siblings " that

> actually understand the pain of morbid obesity and this journey away from

> it.

>

> I am looking forward to

> Even less pain, being able to buy smaller clothing, being out in public and

> being just an average girl that no one notices. I can't even imagine

> looking

> like one hot Mama like Kym.

>

> I had exactly what Jo wished for me, a boring and uneventful recovery from

> surgery. I hope the rest of her predictions will also be true that this

> miracle

> is still unfolding and will continue for some months to come.

>

> My sincere thanks to all of you for your support on this journey

> Big Hugs! in Tacoma WA

>

>

[Guest guest]

!

I am so happy you posted! I think of you often. It sounds like overall you

are doing just wonderfully! 1X how exciting is that?

And all the improvements in your health! It is just incredible to read

about. I bet you look fabulous and I hope you will post some pictures.

Isn't it something to think of where we were when we met? Just a couple of

days post op and moving slowly through the halls of the Best Western? And

think of all the health and energy we have now just 6+ months down the road. I

am

so excited for the next 6 months!

Keep posting! Keep in touch!

Love,

Your " switch sis " in Tacoma

Sitting right outside the door to the Century Club

-97 pounds

[Guest guest]

, isn't this surgery a miracle? Congrats on the GREAT update!

Tracey

all my switch sibs -

I have been

> super busy with work the last 5-6weeks. >

> It's great to be able to keep in touch with everyone! It is so

very special

> to be able to hear how everyone is doing, each of our challenges

and successes

> in this wonderful journey!

>

> Big healthy hugs to all!

> B in Santa

> 2/2002 - 343 highest

> 3/24/03 - 320 (Dr. K)

> 6/24/03 - 266 (-54)

> 9/24/03 - 238 (-82)

[Guest guest]

, isn't this surgery a miracle? Congrats on the GREAT update!

Tracey

all my switch sibs -

I have been

> super busy with work the last 5-6weeks. >

> It's great to be able to keep in touch with everyone! It is so

very special

> to be able to hear how everyone is doing, each of our challenges

and successes

> in this wonderful journey!

>

> Big healthy hugs to all!

> B in Santa

> 2/2002 - 343 highest

> 3/24/03 - 320 (Dr. K)

> 6/24/03 - 266 (-54)

> 9/24/03 - 238 (-82)

[Guest guest]

Hi ,

I think I can answer some of the IQ questions from the perspective of a

professional and a mother. I'm a psychologist and I do the testing that you

speak

of, however, I am unfortunately not able to keep up with all the e-mail as of

late (because of a different medical issue with my other son) so I don't know

the details of . So, I'll just speak in general terms and maybe the

others, can help you also with the specific terms.

I'm assuming that one of the tasks before the psychologist is determining

neuropsychological functioning, esp. for the presence of a learning disability.

It's an assumption b/c I don't know the details of the reasons for testing. An

IQ score is a crucial element in diagnosing a learning disability and making

recommendations for remediation. The IQ score gives the dr. something to

compare the academic achievement or the developmental scores with. So,

basically, he

might say, for example, 'well, Amy is 10 years old and has an above average

IQ, but her academic reading score is only at the 2nd grade level'. This would

tell the dr. that there is a reading learning disability and then he can do

further testing to determine what part of the reading skills need more help. The

IQ score, in a sense, tells the dr. what to expect in terms of developmental

and academic scores. I've also had kids in my practice who had average IQs and

yet their academic achievement scores were way above average and they, of

course, don't have a learning disability, but are clearly working very hard and

maybe at their maximum capacity. That helps parents decide that B's are okay

and not to push their child much harder. The other piece that is helpful with IQ

testing is that there are different subtests that measure different

intellectual capacities. So, you can have a kid that is great at learning

everyday kind

of random things and yet struggles with his visual spatial capacity, so, that

child might have a lot of knowledge but can't organize his paper to display

his knowledge (i.e. in other words, he might write all over the page instead of

a neat left to right direction).

So, those are some examples. I know the IQ scores are loaded with meaning for

parents. I'm a mom too and can get caught up in numbers as well. But, if you

can look at it, as just a number that the dr. uses to compare other numbers

with to see what's going on with your son's development, academics, and

neurological functioning, it might be helpful. So, that's just my two cents

worth. If

you have other questions about this, feel free to e-mail me and write Anne on

the subject heading and I'll make sure to answer.

Good luck with the next 2 weeks. I think I know how difficult all of it is.

I'm off to the geneticist with my younger son and then probably to a

neuromuscular dr. after that.

Yuck!

Anne R. mother of Sam (IgA def., polysaccharide antibody def) and Ash

(muscular weakness, hypotonia)

[Guest guest]

YIPPEEE Ed!

I'm waiting on approval for my hernia repair/TT/Paniculectomy.

When is your surgery? I'm " penciled in " for November 21.

I look forward to seeing you at the November Vegas meeting.

On Thu, 30 Oct 2003 20:13:09 -0800 " luckee " <luckee@...> writes:

> Hi All,

> It's been awhile since I posted and I'm sorry about that.

> I had my surgery in May 2002. It's been 18 months and I have lost

> 114 pounds. I stopped loosing at 13 months out.

> I'm fine at 216 poundsBut would really be thrilled at 180.

> I'm sorry I didn't post to complain.... I just got the word from my

> insurance company, they finally approved my hernia repair and TT

> !!!!!!!!!!!

> I had been denied twice and then approved.

> I called Dr K office immediately and booked a room.

> Ed in Vegas

>

>

>

[Guest guest]

> Hi All,

> It's been awhile since I posted and I'm sorry about that.

> I had my surgery in May 2002. It's been 18 months and I have lost

114 pounds. I stopped loosing at 13 months out.

> I'm fine at 216 poundsBut would really be thrilled at 180.

> I'm sorry I didn't post to complain.... I just got the word from my

insurance company, they finally approved my hernia repair and

TT !!!!!!!!!!!

> I had been denied twice and then approved.

> I called Dr K office immediately and booked a room.

> Ed in Vegas

Huge Congrats Ed!

When is your surgery date? Who is your insurance? I am still

fighting mine, so we will see. Unitedhealthcare has denied me 3

times and I just sent in another appeal. I know what you mean about

being fine, but less would be better. I am right there with you on

that one!

you may just get there with the tt and hernia repair.

Sharon in Onyx

[Guest guest]

Good news for you! When are you booked? Betsy

update

Hi All,

It's been awhile since I posted and I'm sorry about that.

I had my surgery in May 2002. It's been 18 months and I have lost 114 pounds.

I stopped loosing at 13 months out.

I'm fine at 216 poundsBut would really be thrilled at 180.

I'm sorry I didn't post to complain.... I just got the word from my insurance

company, they finally approved my hernia repair and TT !!!!!!!!!!!

I had been denied twice and then approved.

I called Dr K office immediately and booked a room.

Ed in Vegas

[Guest guest]

Hiya Ed!

So good to see your post! Did you just stop dead at 13 months? How were

your losses up to that time...pretty steady? Congratulations on the -114 pounds

-- great job! Great news about the TT and hernia repair! When is your date?

Hugs and blessings, Ann

[Guest guest]

Oh, Sharon, what a beautiful update. I read it to my support person and she

was so touched, too. What a success story! Hugs and blessings, Ann