Re: New To the Group

[Guest guest]

Welcome Casaria and Tasie; my name is Patty and nickname Pattymelt. I have

had Stills since 18 and am now 43. This group is very supportive and

willing to help in any way we can, so ask away or use us as friends. I do

hope you find Tasie someone to help her medical needs so that she may not

have to suffer pain. Till soon, with hugs and smiles, Melt

New to the group

>

> Hello everyone. I send a big hello and lot's of luck to everyone going

through this. My name is Casaria, my daughter Tasie who will be 3 in May

has been diagnosed with Still's. We finally managed to get a diagnosis in

February after fighting the " she has a cold " diagnosis for 2yrs. We are

constantly battling the fevers of 103+ (which now has become her normal

temperature), aches and pains in her knees and arms, and horrible eye pain.

She was also born with clubfeet so it is making her walking even more

difficult.

>

> We are not on any kind of medicinal treatment yet. Which makes things

very difficult. She is constantly getting lung infections after the first

week of her fevers. Fevers last 3wks, then we get a couple of days of

normalcy, then right back at it.

>

> It is really pretty hard dealing with this in a 2 1/2 yr old little girl.

She is such an angel and I keep asking why this happened. But we are all

learning to deal with it, live with it.

>

> I am a single mom, trying to go to school as time allows. We recently

moved back home with my parents, so as to have a little extra help.

>

> My birthday is 01-31 I am 22yrs

>

> Tasie's birthday is 5-20-99 almost 3.

>

> I am so happy to be a part of this group. I hope that together we can all

continue to gain more knowledge and grow with this.

>

> Sincerely,

>

> Casaria Tuttle

>

> Salem, Oregon

>

>

>

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

>

[Guest guest]

Jerry... Welcome to the group! I'm on my way to New Mexico in a few days,

so I didn't get a chance to say hi in Delano. Did you get a surgery date

yet?

Elle **

www.growley.com/mywls/index.html

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

> I had my consultation with Dr. K. this past Tuesday, 3/11 > Jerry

[Guest guest]

Jerry, you can go to the group home page

http://groups.yahoo.com/group/DS_Friends_Keshishian/ and click on

Edit My Membership and change the email address that you prefer to

receive your mail.

You may have already known that... but just in case :-)

Wanda

> I had my consultation with Dr. K. this past Tuesday, 3/11, and then

> went to the support group meeting that evening. (my support

> person/spouse) and I enjoyed meeting everyone there and at Perko's

> after.

>

>

>

>

> Someone mentioned a support group would be forming in the

Sacramento

> area in the near future. Does anyone have any more info?

>

>

>

>

> For those of you in the Sacramento area, which support group

meeting

> do you go to now? I'd like to start attending on a regualr basis

even

> though I'm still pre-op.

>

>

>

>

> Thanks,

>

>

>

>

> Jerry

>

>

>

>

> BTW.. I don't check the yahoo email account very often. If you

want

> to email me, please use sujerlam@e...

[Guest guest]

Hi Jerry,

Welcome to the group. I just happen to be from Sacramento and I

don't know of a support group that is just a Dr. Keshishian group.

There is a Dr. Rabkin group over in the Greenhaven area and alot of

Dr. Keshishian's patients go there. My partner is a Rabkin patient

and I am a Dr. K patient. The group is warm and friendly and very

informative. You can e-mail me if you would like a phone number etc.

The next meeting is Thursday, March 20 from 7 to 9 pm. I went to

this group for about 13 months before my surgery. They have food and

drinks (sodas and water) so you eat and talk and meet people waiting

for surgery or they are post op.

Let me know if you need more info. Again welcome..

Kind regards,

Kinsey from Sacramento

> For those of you in the Sacramento area, which support group meeting

> do you go to now? I'd like to start attending on a regualr basis even

> though I'm still pre-op.

>

>

>

>

> Thanks,

>

>

>

>

> Jerry

>

>

>

>

> BTW.. I don't check the yahoo email account very often. If you want

> to email me, please use sujerlam@e...

[Guest guest]

Hi Jerry,

Welcome to the group. I just happen to be from Sacramento and I

don't know of a support group that is just a Dr. Keshishian group.

There is a Dr. Rabkin group over in the Greenhaven area and alot of

Dr. Keshishian's patients go there. My partner is a Rabkin patient

and I am a Dr. K patient. The group is warm and friendly and very

informative. You can e-mail me if you would like a phone number etc.

The next meeting is Thursday, March 20 from 7 to 9 pm. I went to

this group for about 13 months before my surgery. They have food and

drinks (sodas and water) so you eat and talk and meet people waiting

for surgery or they are post op.

Let me know if you need more info. Again welcome..

Kind regards,

Kinsey from Sacramento

> For those of you in the Sacramento area, which support group meeting

> do you go to now? I'd like to start attending on a regualr basis even

> though I'm still pre-op.

>

>

>

>

> Thanks,

>

>

>

>

> Jerry

>

>

>

>

> BTW.. I don't check the yahoo email account very often. If you want

> to email me, please use sujerlam@e...

[Guest guest]

((((((((Missy))))))))

Welcome to the group. I didn't even realize you were in Georgia.

That's great! I have lots of info in HR 1350 if you still need it.

Hope all is well??

Love, prayers and heart hugs,

Debbie (GA), SAHM to Evan (4.5 y/o with ToF, PA, RBBB, Autism

Spectrum Disorder, SID, Asthma); (13 months old and HH and

NT?); and my 3 angel babies whom I will finally see when God says

it's time!

9:1-3

> Hi!!

>

> I joined the group earlier this week but it has been one of those

weeks here!! So here is my intro. I look forward to getting to know

everyone in the group. I am a learning mode right now and trying to

get any and all info I can about HR 1350 and the revisions they want

to implement. Please!! If anyone can help me on this email me

privately. I plan on going to the governor with all info I can get.

>

> I am a stay at home mom(SAHM) to 5 kids. My oldest is 14, Zach. He

was diagnosed with Asperger's at the age of 8. Thanks to the fine

healthcare system all that happened as a bit of counseling and he

attended a socialization class for boys his age. He shows signs of

ODD and OCD as well.

> I have 11yr old girl/boy twins, Beccah and Ethann.

> Ethann was diagnosed with epilepsy when he was 4mths old. At 3

they said he had a " behavior problem " and said ADHD. But due to the

seizures stimulants are not an option. Besides their diagnosis of

ADHD I always thought there was something more to him. It wasn't

until I began researching Sensory Integration with my 23mth old that

I realized not only did Ethann fit the criteria but so did I. Then

the puzzle pieces began to fall into place. The OT who see's the

baby twice a week did an assessment on Ethann and he was almost off

the chart. He has a lot of sensory issues and they interfere with

life on a daily basis.

>

> Next is who is 4. He is a mixture of Zach and Ethann and we

suspect he too may be an ASpie. Lexi is 23mths old and has several

problems. She is seeing OT,ST and PT each twice a week. She lost all

gross motor and fine motor skills at the age of 6.5mths--still

uncertain why.

> She is being evaluated right now for a seizure disorder. An EEG a

month ago was normal but she is having what appears to be " drop

seizures " . I know nothing about them. The only seizures I researched

were Ethann's. We are waiting for a video EEG to be scheduled. The

neurologist wants to try and catch a seizure before starting

medication. They can be very hard to catch but he wants to try.

There is also a question about PDD with her.

>

> Ok now that I rambled on, I look forward to meeting everyone and

learning all I can.

>

> MISSY

> SAHM to some special kids!!!

>

> Excuse Me While I Go

> Raise Tomorrow's Future.

[Guest guest]

Hi Debbie!! It's to see a familiar face!!

I would love any and all info you can send me!! I am apposed to the changes they want to make but I need everything to back it up. lolol

How are th boys doing?

MISSYSAHM to some special kids!!!

Excuse Me While I Go Raise Tomorrow's Future.

Re: New to the Group

((((((((Missy))))))))Welcome to the group. I didn't even realize you were in Georgia. That's great! I have lots of info in HR 1350 if you still need it. Hope all is well??Love, prayers and heart hugs,Debbie (GA), SAHM to Evan (4.5 y/o with ToF, PA, RBBB, Autism Spectrum Disorder, SID, Asthma); (13 months old and HH and NT?); and my 3 angel babies whom I will finally see when God says it's time! 9:1-3> Hi!!> > I joined the group earlier this week but it has been one of those weeks here!! So here is my intro. I look forward to getting to know everyone in the group. I am a learning mode right now and trying to get any and all info I can about HR 1350 and the revisions they want to implement. Please!! If anyone can help me on this email me privately. I plan on going to the governor with all info I can get.> > I am a stay at home mom(SAHM) to 5 kids. My oldest is 14, Zach. He was diagnosed with Asperger's at the age of 8. Thanks to the fine healthcare system all that happened as a bit of counseling and he attended a socialization class for boys his age. He shows signs of ODD and OCD as well.> I have 11yr old girl/boy twins, Beccah and Ethann.> Ethann was diagnosed with epilepsy when he was 4mths old. At 3 they said he had a "behavior problem" and said ADHD. But due to the seizures stimulants are not an option. Besides their diagnosis of ADHD I always thought there was something more to him. It wasn't until I began researching Sensory Integration with my 23mth old that I realized not only did Ethann fit the criteria but so did I. Then the puzzle pieces began to fall into place. The OT who see's the baby twice a week did an assessment on Ethann and he was almost off the chart. He has a lot of sensory issues and they interfere with life on a daily basis.> > Next is who is 4. He is a mixture of Zach and Ethann and we suspect he too may be an ASpie. Lexi is 23mths old and has several problems. She is seeing OT,ST and PT each twice a week. She lost all gross motor and fine motor skills at the age of 6.5mths--still uncertain why.> She is being evaluated right now for a seizure disorder. An EEG a month ago was normal but she is having what appears to be "drop seizures". I know nothing about them. The only seizures I researched were Ethann's. We are waiting for a video EEG to be scheduled. The neurologist wants to try and catch a seizure before starting medication. They can be very hard to catch but he wants to try. There is also a question about PDD with her.> > Ok now that I rambled on, I look forward to meeting everyone and learning all I can.> > MISSY> SAHM to some special kids!!!> > Excuse Me While I Go > Raise Tomorrow's Future.

[Guest guest]

Hi Donna and Missy!!

Sissi (from parenting_autsim list)

[Guest guest]

Hi . Welcome to the group. Ask any questions you may have. Everyone on here is awesome and so willing to help. Tell us more about your child. What treatment have you had so far and what treatment are you looking for in the future?

Subject: New To the GroupTo: infantile_scoliosis Date: Sunday, November 1, 2009, 12:16 AM

Hello, My Name Is . i have a 9 month old Son named Thaddeus Who was diagnosed with Scoliosis when he was in the NICU. He was born 2 months early. i just wanted to say hi and i look forward to talking to everyone.

[Guest guest]

Hello Nikki, welcome to Cast. I am so sorry you have had to deal with so much with your baby and on top of it, lost your husband. I can't imagine the strength you must have. We are here to help you and support you. We all know what you are going through and have been in your shoes when it comes to casting your child. I TOO thought that casting sounded a little barbaric, but quite the opposite, it is gentle and slow. Your child will really adjust very quickly. Kids are so resilient. You will get into a routine of diapering and bathing and it will be everyday life for you and him. When my son wets on the undershirt, we pull it down as far as we can and clean it with Cetafil soap and warm water then blow dry the shirt on cool (don't want to burn the baby). I learned this from the ladies on this group. They are all so helpful and wonderful. Ask any questions and please turn to us for support

Joanmom to Hayden 343 degrees down from 62Cast number 3Treated at ish Rite Hospital Dallas, TX

To: infantile_scoliosis Sent: Thu, February 18, 2010 12:51:35 AMSubject: New to the group

Hi! My name is Nikki and I have a 19 mth old son who is in his first cast - he was casted last Wed. (Feb. 10) at the Shriners Hospital in Spokane. The day of casting Brett's right thoracic curve measured 63 degrees and his lumbar curve measured 74. According to the doctor's notes and discussions I had with him, Brett has Congenital Scoliosis however, I just looked at the surgery notes and it states PIS? I have a call into the doctor. I don't know if they just made a mistake on the surgery papers or what? That doesn't give a mom much comfort. =)Brett has had a rough start from the get go. He was born 9 wks early, "floppy". After extensive tests and several muscle biopsies, it was found he has a rare muscle disease call Central Core Myopathy - very basically put, he has low muscle tone. He's a tough and determined little guy! He has both OT and PT every week - along with daily home exercises. He's behind developmentally by about 6 mths and now

with the cast even more. =(I have to say, Brett is adapting to the cast remarkably well! Much, much better than I am! I was anxious to find a group of parents whose kids had been casted and am thrilled I finally did. At first I was extremely apprehensive about casting b/c this is 2010, isn't there something less "archaic" than casting a tiny child? Did anyone else have that thought/feeling? But I have researched extensively for any alternative options and I haven't come up with any!!Sorry to go on so long, I just wanted to get my story out there. If anyone has any advice on how to get through this, I would really appreciate it! Brett has just had one issue after another and I'm exhausted! I'm an only parent, my partner - Brett's father passed away when I was 9 weeks pregnant. Thanks for reading! And I appreciate any advice you have to offer.PS - has anyone had a problem with their child's undershirt getting wet? If so,

what did you do? Grandma watched Brett today and she didn't know how to "properly" diaper him so I had a mess tonight to deal with!