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Topic: Ds clinics   
03-08-2006 01:52 PM
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elizasmom  
Senior Member

Location: Marin County, CA
Registered: Jul 2005
Posts: 534
Last visit: 03-24-2006

Just heard that a new Ds clinic is opening up at Stanford in April. Wondering if it is worth trying to get an appointment. It's a little over an hour away from us. Wondering about why people have taken their kids to Ds clinics and what they offer as opposed to your local doctors and therapists. Thanks!
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Liz - Mom to Walker (3/24/02) and Eliza (Ds) (5/6/05)

03-08-2006 02:03 PM
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DanielsMommy  
Super Member

Location: Rhode Island
Registered: Sep 2005
Posts: 1403
Last visit: 03-24-2006

I am not sure if we have a Ds clinic that is exclusive to DS...but we do see a Dev Ped who is also a geneticist at the Child Dev Center at Hasbro Childrens Hospital in Providence. He specializes in Ds (Dr. Siegfried Pueschal) and he sees Daniel every six months. He makes sure our reg ped knows all the extra tests and things to watch for. He gives him a full exam...tracks any testing, discusses any problems and kind of just lets you know where you are...and where you should be looking to go. He had a son (who is on the cover of his book)...with Ds..but sadely he passed away a few years ago (in his 20's). I believe he had a heart defect.

I enjoy meeting with him and feel confident that Daniel is getting the best care from our ped and dev ped. I would say if you can get an appt...it would be worth it to go....if you don't get anything out of it...then you don't have to go back......but I say it is definitly worth the visit.
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Lisa
Mommy to Elayna 10-1-02 and Daniel Ds 6-7-05
Always have hope....Without rain, there can be no rainbows.






03-10-2006 11:30 AM
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mattsmom  
New Member

Location: California
Registered: Oct 2005
Posts: 16
Last visit: 03-22-2006

Do you know the name of the clinic? If you can give me the name and address that will be good. Matthew has only regular ped, now I am wondering if I need a doctor that specialized in DS. He is almost 3.
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Lydia

Matthew (5/5/03)

03-10-2006 11:42 AM
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burnsun  
Senior Member

Location: Missouri
Registered: Nov 2004
Posts: 512
Last visit: 03-24-2006

We tried the ds clinic with Miranda

This is what I liked- they scheduled all her needed specialist visits (ent, cardiology, endocrine & eyes) for the same day and had someone help us navigate getting to all the appointments. We also saw the genetisist- not really feeling any necessisty on my part for that- but she coordinates the clinic. We love the nurse practioner.

I had previously made all the appointments myself for all of my kids on the same day like that if possible - or two specialist a day

I can't really say I liked it better or worse- it just worked out nice- and it was nice to know I was getting specialist who liked working with genetically enhanced individuals. (Believe it or not- NO ALL OF THEM DO!!) but if the agree to do the clinic- you got a better chance imho

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Jane

mom to
Colin (11/19/00) DS
Melea (2/13/02) DS
Adrian (7/04/03)
Miranda (2/1/05) DS

wife to great guy Eric
]

03-10-2006 03:04 PM
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elizasmom  
Senior Member

Location: Marin County, CA
Registered: Jul 2005
Posts: 534
Last visit: 03-24-2006

Info on clinic

Here's the info. I think we are going to wait a year or so and take Eliza. Don't know yet if our insurance will pre-approve since Eliza doesn't have any medical reason to go, but we'll see...


Center for Down Syndrome

Fact Sheet

Lucile Packard Children’s Hospital at Stanford is proud to announce the opening of a multi-disciplinary clinic devoted to the evaluation and care of children with Down syndrome. LPCH is one of the few children’s hospitals in the nation to offer these much needed services to children. The mission of the Center for Down Syndrome is to help each child with Down Syndrome reach his or her full potential and function as independently as possible in all aspects school and family life.



Patient Care

The Clinic is staffed with a dedicated team of specialists that include pediatricians, clinical geneticists, genetic counselors, specialists in child development, social workers and physical and occupational therapists. Our team is focused on the prevention and early detection of the medical and developmental issues associated with Down syndrome. The clinic staff will work with each child’s primary care physician to provide the coordination necessary for the many services needed by these children, educate parents so that they can become strong advocates for their children and assist them to locate resources in the their community.



Each patient will receive the following services:



Comprehensive medical and genetics evaluation
Comprehensive developmental evaluation
Referrals as required to other sub-specialists and ancillary services
Coordinated care for each patient will be managed by our staff
Regular and/or continuing followup care (to be assessed and coordinated with primary care physicians and families based on individual needs)


Faculty

The clinic is directed by the following physicians:



Dr. Eugene Hoyme is Professor of Pediatrics and Chief of the Division of Medical Genetics in the Department of Pediatrics at Stanford and Lucile Packard Children’s Hospital. Dr. Hoyme is a pediatrician and clinical geneticist with 25 years experience in the field. He has particular interest and expertise in children with chromosome anomalies.



Dr. Melanie Manning is Clinical Instructor of Pediatrics and Pathology in the Divisions of Medical Genetics and Cytogenetics at Stanford and Lucile Packard Children’s Hospital. Dr. Manning is a pediatrician and clinical geneticist. She has years of experience in the care and evaluation of children with disabilities. She has particular interest and expertise in children and adults with chromosome abnormalities.



Access Information

To make an appointment, please call our clinical coordinator (Kelly Chen, MS): 650-723-6858 extension 1



Clinic Hours and Location

Clinics will be held on Thursday mornings in the:



Mary L. Johnson Pediatric Ambulatory Care Center

Neurosciences Clinic

730 Welch Road
Palo Alto, CA 94304




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Liz - Mom to Walker (3/24/02) and Eliza (Ds) (5/6/05)

03-10-2006 03:35 PM
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ajbest  
Super Member

Location: NC
Registered: Apr 2005
Posts: 2070
Last visit: 03-24-2006

we've gone periodically b/c they told us to go - it's same place Janna was born. she sees a dr. that specializes in treating kids w/ Ds. he knows her Ped and highly spoke of him. they didn't do anything diff. than any other dr. for her but schedule her for ENT, eye appt. etc. i guess they are there to make sure nothing gets missed. she's gone 3mos., 6mos. 1yr. (which we missed b/c of surgery) and i think has 2 more visits up to 18mos/2yr? and then that's it. i'm sure a Ds in CA could be different than one here in NC so it would probably be a good thing to check into. aj
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Momma to Janna (AVCanal-T21-02/02/05)
Wife to Joseph (TOF & still thriving)



"Where there is charity and wisdom, there is neither fear nor ignorance." St. Francis of Assisi

03-11-2006 11:24 PM
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bonniepd  
Senior Member

Location: Minneapolis area
Registered: Jan 2006
Posts: 136
Last visit: 03-24-2006

I was wondering about Special clinics too. We have one in Minneapolis. We have good insurance but we have heard of people going and then they have a lot of medical bills because their insurance did not pay for it. Our pediatrician is good and she said she can call the clinic at any time to get advice. Our pediatrician also over sees medical care for two other families that have children with DS.. We have not had many medical issues so far with Anthony so I don't know how important it would be to go to a special clinic.
Bonnie
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03-12-2006 01:46 PM
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always_chaos  
Senior Member

Location: Detroit Metro, MI
Registered: Dec 2005
Posts: 479
Last visit: 03-24-2006

Bonnie: A speciality clinic like this may be a great resource for issues like aspiration. I am sure that your little guy has had a swallow study done to determine he does so, but just thickening his formula will not always prevent pneumonia or other problems that can occur as a result of aspiration-like interstitial lung disease, asthma, or other issues.

Many children who aspirate often run into a number of other respiratory issues as a result and a clinic that specializes in DS would likely be able to monitor and manage this problem much better than just the typical pediatrician-they just don't have enough experience with these types of speciality issues.

Elainah had a wonderful developmental ped doctor when we were in Iowa at the Center for Disabliities. They often help with a number of other issues. Here is a recent flyer from our old University of Iowa Hospital Clinic-I really miss having this resource.


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