October 29, 2012

DS Clinics? Doctors?

Earlier this month someone left a comment asking about Down Syndrome Clinics (Hi Anna!).   I have to say that we've never been to one.

When Hannah was born and recovered from her critical medical issues, we were sent home with a long list of "follow up" appointments to make.   One of them was the geneticist.  We had briefly met with him earlier in the hall of the NICU when he gave us the official diagnosis, but we didn't know why we needed to see him again.   We felt like once we got the diagnosis, there wasn't much else a geneticist could do, right?

Right.   It was waste of our time and money.   I have friends who LOVE their geneticists.  I'm not anti-geneticists.   I don't know what they could offer us.  I recall asking some DS parents about the Down Syndrome Clinic in Charlotte, NC (where we lived at the time).  They said it was mostly for adults with DS.  So I dismissed it.  I liked the idea of one-stop-shopping, but since the clinic focused on adults, I moved on.  We had a decent pediatrician.  We ditched the county "services" early on.  All they could do was put us on a waiting list for a Physical Therapy Assistant, and we'd have to pay for it.  That wasn't our idea of "Early Intervention".  So we found a local high quality therapy practice.   All the therapists were trained in Neuro-Developmental Treatment and worked as a team (an EXCELLENT approach!).  We had to pay for it, but it was our choice.

Physical Therapy began when Hannah was about 3 months old, once a week, with homework. When she was almost a year old we added Speech and Occupational Therapy.   We dropped PT when Nan was about 3 years old.  We kept up with Speech and OT for a couple more years.  (We also had a little bit of time with the school system therapists, but we dropped that soon after.)  Since then, she's not had any therapy.

Early on Hannah saw an ophthalmologist, a pulmonologist (frequent pneumonia in her early years) and a cardiologist (still does).  But most every need was met by our pediatrician.  I think that if I didn't have a decent pediatrician we would have pushed to find another way to meet Hannah's medical and developmental needs.

I've researched Down Syndrome Clinics--some are REALLY REALLY good!  Who wouldn't want to see Dr. Skotko in Boston, or Lutheran General Hospital's clinic in Illinois?  But some are mediocre.  I know a family who went to the clinic in Charlottesville, VA (Kluge Children's Rehab) and they came home with an incorrect dual diagnosis of Autism.   Totally WRONG.

Our family had time to gradually ease in to Hannah's needs.   We didn't have a prenatal diagnosis, but we did have access to the internet and good information.   We didn't need to start everything immediately.    I have friends who have adopted a child(ren) with Down syndrome.   It's got to more difficult to jump into the middle of everything.  I'd definitely go to a DS Clinic.  It takes time to figure out what kinds of things you need to look for--things other than therapies.   Endocrinology, Cardiology, Gastroenterology, Otolaryngology, Neurology (apnea?), Ophthalmology...Psychology?   Unless you already had experience with Down syndrome, it would be overwhelming to figure out what some basic questions would be.  A DS clinic would be a great place to start you wouldn't need eight separate appointments.  Knock them all out in one day.  At least the physicians and clinicians actual have an interest in and experience with the DS population.  And hopefully they'll be superlative.  They certainly couldn't be worse than the doctor you'd find through the list your insurance provides.

It's also very difficult to find a general pediatrician who will actually:  
a.) Listen to you and do what you say  ("We need these blood tests.")
b.) Have actual accurate knowledge and experience in Down syndrome or be willing to learn
c.) All of the above.

I research Down syndrome. A LOT.   I expect to be respected as a parent and a participant in my daughter's health issues.  If a doctor will not value me as an equal partner, he or she will not be my daughter's doctor.   We have to be a team.

Age 10 with her ENT

After thought: Another option is to find a really good developmental pediatrician.   We've never been to one, but many families really love the positive encouragement from a DP.  Might be a middle-of-the-road solution for those who don't have a clinic nearby.  (BTW, we don't have a clinic in our area.)

1 comment:

Jan and Randy said...

We never went to a Ds Clinic either. Nor do we do the ENT or other specialists, save for the Cardio for followups. We pretty much use our Pediatrician who is very wonderful and listens to us. Most of my friends who do go say they just like hearing that they are going down the right road, etc.

Not sure what we'll do when our Ped retires which I expect any time.