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Does anyone live in the Flagstaff AZ area?

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Hi all,

I have a friend whose 4th child might have RSS. She has had quite a

difficult life for the past 4yrs - Her husband died suddenly when her youngest

child

Luke was a year old. He had an unusual situation with the opening of the

urethrea on the back of his penis instead of at the tip along with a

nondistended

testicle and lots of pubic fascia.

Four years ago this seemed to be his only worry but with the death of her

husband, financial difficulties and moving from NYC to AZ she had not been able

to address his needs because of all that was required by the other children and

Luke's need for corrective surgery.

Luke just had corrective surgery donated by a pediatric Urologist at Columbia

in NYC but an endo he saw a few months ago suggested RSS. He has hypotonia,

poor appetite, speech delay and is 4yrs 8 months 30lbs, 37in.

She can not come to the convention this summer but I would love to connect

her with someone in this fabulous group who might be in her area and have any

suggestions on a Ped. Endo familiar with RSS she might visit.

Anyone have any suggestions?

Many thanks and I look forward to seeing everyone in Chicago,

RH (mom to Henry 4yrs old tomorrow 32lbs, 38in RSS - periactin-

g-tube-peptamen jr- prilosec-zantac-nutropin and 8yrs old 42lbs, 48in

nonRSS believe it or not)

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How far is Flagstaff from Phoenix. It is almost midnight and I am

too tired to look it up. The reason I ask is that Dr. Ursea, the

peds gastrointerologist who worked with Dr. Harbison and Dr.

Spigland (surgeon) at NYC to manage all the RSS kids, well, she just

moved to Phoenix Children's Hospital!!!! She starts in one month

(just had her first baby, a little boy). She is coming to the

convention as well (with her husband and baby). She is going to be

ideal for us in Arizona, because we have had difficulties finding

good doctors there. If we can match this child up with Dr. Ursea,

she can probably find a listening endo.

I have Dr. Ursea's personal email address. If you will get this

mom's contact information, I will ask Dana Ursea if I can have the

mom contact her.

Please tell this friend of yours how truly sorry I am for all that

she is going through, and we'll do anything we can to get her help.

Is the reason she can't come to the convention this summer

financial??? Because I have a donor who may be willing to cover

most of her costs, including airfare. A unique situation that

matches your friend pretty well. Would you contact her and ask

her? Please contact me privately.

Salem

> Hi all,

>

> I have a friend whose 4th child might have RSS. She has had quite

a

> difficult life for the past 4yrs - Her husband died suddenly when

her youngest child

> Luke was a year old. He had an unusual situation with the opening

of the

> urethrea on the back of his penis instead of at the tip along with

a nondistended

> testicle and lots of pubic fascia.

>

> Four years ago this seemed to be his only worry but with the death

of her

> husband, financial difficulties and moving from NYC to AZ she had

not been able

> to address his needs because of all that was required by the other

children and

> Luke's need for corrective surgery.

>

> Luke just had corrective surgery donated by a pediatric Urologist

at Columbia

> in NYC but an endo he saw a few months ago suggested RSS. He has

hypotonia,

> poor appetite, speech delay and is 4yrs 8 months 30lbs, 37in.

>

> She can not come to the convention this summer but I would love to

connect

> her with someone in this fabulous group who might be in her area

and have any

> suggestions on a Ped. Endo familiar with RSS she might visit.

>

> Anyone have any suggestions?

>

> Many thanks and I look forward to seeing everyone in Chicago,

>

> RH (mom to Henry 4yrs old tomorrow 32lbs, 38in RSS -

periactin-

> g-tube-peptamen jr- prilosec-zantac-nutropin and 8yrs

old 42lbs, 48in

> nonRSS believe it or not)

>

>

>

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