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Re: RSS in Los Angeles

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Hi

Welcome to the group. I am in Canada, so I can't offer you any help with

people in the los Angeles area, but since your email has come later in the

evening for most of us on this side of the continent, I'm sure someone will

respond soon.

I have to ask you about your email address. I see bell and then ingold. My

maiden name was Ingoldsby and it's uncommon to see Ingold. So I thought I'd

ask what it stands for.

As you begin your RSS journey, you will find this group to be absolutely

invaluable for information and support.

I would direct you to another web site www.magicfoundation.org This is a

foundation that specializes in children with a variety of growth disorders,

including RSS. It has wonderful information and if you pay a membership fee

of 30.00 a year, it offers research papers/information, newsletters and so

much more. You can access some of the info on RSS without paying. Magic has

a convention, in Chicago, in July each year where many of us meet up. I went

down this past July (my second time) from up here in Canada, and many other

Canadian, American, Australian and U.K. families have made the journey.

Anyway, welcome again and feel free to post any question you have. You might

think it's minor or silly, but trust me we have all probably already asked

that question.

Debby

RSS in Los Angeles

> My daughter, Claire, was diagnosed last week with probable RSS. She

> was IUGR and small at birth, 3 lbs 6 oz and 15 inches. She is 10

> months old tomorrow and 11 lbs 23.5 inches. I am particularly

> interested to know if anyone on this listserv in from the Los Angeles

> area and/or know of doctors in this area who are familiar with

> treating RSS.

>

> We are relieved to finally have a diagnoses that explains Claire's

> medical issues and provides us with a roadmap for the future.

>

>

> 3, Claire 10 months RSS

>

>

>

>

>

>

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Dear ,

Welcome to our group. I encourage you to joing the Magic

Foundation. This group is full of information and help that you

will soon need and they will answer questions which we have.

Our daughter Gaby is seen my Dr. Geffner in Children Hospital of

Los Angeles, he was referred to us by Magic Foundation. She is also

seen by Dr. Watanabe GI Doc., also in Childrens Hosp. of Los

Aneles, both Dr.'s have a lot of knowledge with RSS. They are both

very welling to answer all of our questions and concerns we have,

especially as first time parents of RSS.

You will need to fax them all of your daughters information,

before they will see you.

Please feel free to email if you have any questions at

asayed@...

Stella

Amani 7 yrs non-rss, andres 5 yrs non-rss and Gaby almost 2 RSS.

> My daughter, Claire, was diagnosed last week with probable RSS.

She

> was IUGR and small at birth, 3 lbs 6 oz and 15 inches. She is 10

> months old tomorrow and 11 lbs 23.5 inches. I am particularly

> interested to know if anyone on this listserv in from the Los

Angeles

> area and/or know of doctors in this area who are familiar with

> treating RSS.

>

> We are relieved to finally have a diagnoses that explains Claire's

> medical issues and provides us with a roadmap for the future.

>

>

> 3, Claire 10 months RSS

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Hi,

My son sees Dr. Costin at Children's Hospital of Los

Angeles. I could not wholeheartedly recommend her. She is a

little " old school " and conservative in her approach, I think. I

have tried to switch to Dr. Geffner, but since technically she is our

second Ped endo (2nd opinion) our insurance won't let us switch again

(which is baloney if you ask me.) The first Ped Endo we saw was Dr.

Van Dop (I think out of Valley Pres.) We switched from him after a

few visits, I just thought he was very dismissive of my efforts of

researching and gathering information.

We haven't really had any GI issues, so I don't have any doctors to

recommend for that. If you happen to be up in the Santa Clarita

Valley, we have a good ped - Dr. Horowitz at Facey.

Sandy

Mom to , 5yrs, 4 mos, 33lbs or so, 41 " or so.

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