Recently I learned that the children's hospital Finn spent his first couple of weeks in has recently opened a Down syndrome clinic. That's what the website calls it, a "Down syndrome clinic." Through the blogging community, I know a lot of other parents who have children with Ds take their kids to a Ds clinic periodically, and based on what I've read on other blogs about this, and from the website of this particular Ds clinic, my impression was that a Ds clinic is a team of doctors, specialists, and therapists whose focus is on Down syndrome.
I love our pediatrician, and we've been with him for a long time - since my oldest was born 13+ years ago. He's a wonderful doctor, and while I have no problem continuing to take Finn to see him for his overall care, he's not particularly knowledgeable about Down syndrome, so I thought maybe having a team of specialists whose focus is on Down syndrome see Finn periodically might be a good idea. However, it appears now that it's just one doctor, a neurologist. We got a referral from our pediatrician, and I went ahead and made an appointment for Finn for late in March. But I'm kind of wondering right now what's the point? Is this necessary? What benefit should we expect to get from this? If this "clinic" really just is one doctor - a neurologist - what exactly is the point? What questions should I ask? What should my goal be in taking Finn in? Should I even be bothering with this?
I'd really appreciate input here! What has your experience been with a Ds clinic?
11 comments:
To add to my comment elsewhere, the doctor really ought to be taking the lead on this. I don't know that it is 100% necessary because I know you really keep up on things. You know about thyroid checks and ear checks and vision etc etc....
Here's one thing I would propose. Go once. See what they have to say. Then decide if it's for you or not. Might be worth it, but very well not be. If it's new you might at the very least find some really motivated people...
At our clinic, KKI, they have a lot of things that not everyone need, but could certainly come in handy for many: feeding clinic, sensory OT, PTs who do things like treadmill therapy etc, they do a lot of programs for older kids, teens, adults with DS, and they also do a lot of research...we do not do research studies at this time because I do not wish to put G through that stuff...but I can see how it is important. (i.e. studying speech patterns, and about early-onset alzheimers in people with DS)
I love our ped as well, but for me, it was peace of mind. Our pediatrician is the one that recommended we go just to make sure he hadn't missed anything....we went, it was a long day, but well worth it. It made me feel better knowing I had the people that had the most knowledge of DS checking out Addie and that was good for me...hope that helps...
I haven't ever taken Morgan to our clinic but what I've heard is there is a team of individuals who meet with you and go over lots of stuff (pediatrician, ot, pt, st, etc). I have been thinking of taking Morgan in for ideas with her sensory problems with brushing and washing her hair. It's just getting worse and her pediatrician doesn't know what to do with it. I'd take him once and see if you think it's worth it. If it's only a neurologist than that seems kind of weird though, maybe because they are still just in the beginning stages of getting it all set up.
We did this in December. It was good to talk with someone who knows the language, understands the diagnosis, can pat you on your back for all that you're doing right and perhaps leaves with some new tools or things to think about that you hadn't yet. We always prided ourselves that John Michael's growth was on the "typical" chart and that he didn't need to be on the Ds chart. Cool for me... but the Ds doc said it's important to chart JM on the Ds growth chart b/c their growth pattern follows a different curve than typical kids. That made sense, but I never knew that cuz my regular ped doesn't know it either. Just one of those little things. He also told me that testing for Mosaicism isn't necessary, even if it's suspected, cuz you may not test the "right" cells and feel like you want to keep searching by poking holes in your kid. It's also just nice to have another opinion. Our Ds doc is in love with kids who have Ds. He really knows them and I think if your Ds doc is anything like ours, you'll be pleasantly surprised... He may not tell you anything new, or he may give you some new tidbits of info based on Finn and not a textbook. We also had ST and PT evaluations that day and now JM has weekly speech since the ST thought it would benefit his latest language growth spurt. Good luck.
Our pediatrician is actually the head of the Ds clinic. So although we haven't been to the clinic yet, he did say if we ever experience something we want extra help with (like potty training), head on up :)
We tried - in vain - to get in with the Ds clinic at our local children's hospital. They first never called us back and then when they did, we would have had to wait 5 months for an appointment.
The reason why we wanted to have one is because we figured that they would catch anything that our regular doc (whom we love, but who has been less than an expert about Ds) inadvertently let slip through the cracks. Through our local Ds parents group we met a nurse practitioner who used to work at the Ds clinic. For her, the ins and outs of kids with Ds are like breathing. We meet with her once a year now just to make sure that the important things are being checked in on. She schedule a LOOOOOONG appointment (90 minutes?) to cover all of the bases, and we left with a 'prescription' for more OT.
We also had a Ds clinic in town that consisted of one doctor who practiced one afternoon a month. I'm still trying to figure out how THAT worked.
I'm taking Ruby March 5th to the Ds clinic here.I was under the impression that we would be seeing a team of Dr's. but the receptionist called me yesterday and said we would only be seeing the Geneticist.Hmmm
So now I'm wondering the same things you are.I'll post about it after we go.
We take Emilia to one. The doctor there is no less than a genius and we are very blessed to have him. He raised a son who had Ds. I find him invaluable and a wealth of knowledge. I say definitely try it out. Our ped is nice too but has no experience with Ds, so I feel it is a necessity for us to see someone who knows all the in's and out's.
Our son is five years old and we've never taken him to KKIs DS Clinic. Kennedy Krieger calls wanting us to participate in DS studies, but I've never returned their calls.
I honestly didn't want to have to remember to schedule yet another doctor's appointment to his already long list, wait in another waiting room, or expose him to test after test. It's another long day away from home with an infant/toddler who required extensive medical care. No thanks! I'd rather stay home.
I remember asking my pediatrician point blank at his first visit after being released from the PICU, "Do you want Sam as a patient? And do you feel qualified to treat him?" She thought, paused and confidently said yes. She researched, asked questions, fought the insurance battles with us, and suggested precautions for his care. In hindsight, I wouldn't change a thing!
Hmmnnnn...I'm curious to see how this goes for you Lisa, because that would be the exact clinic I would be taking Reid to and have wondered the same things as you...I've been curious about it, but a little bummed it is only 1 Dr., I didn't realize that....I pictured a whole team. Keep us posted! :)
This is very interesting. I'd always thought the clinics were a whole team of drs too. I'll be interested to see what you think of it. I'll have to check and see if anything like this is available in our area.
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