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Post by Renee' on Feb 15, 2008 20:23:29 GMT -5
We went to Lauren's appointment. It went really well. She is functioning at 5 1/2 years. She has excellent social skills and they made some great recommendations. I love the speech evaluation that states she needs more time with typical peers and 1 hour a week in speech not 1/2 our a week. We will see if the school will follow.
We met another family who had a son with Down Syndrome. He was laying on the ground because he wanted a hamburger. He is also 9. I left there with a huge grin on my face knowing that I was not alone. Lauren lays on the ground because she knows we can't lift her... ;D
We return in 6 months.
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Post by Emilysmom on Feb 15, 2008 20:51:31 GMT -5
I think Emily was 11 or 12 when the Ds clinic in Nashville opened. We've gone once a year since then, and we love it! I love the fact that we can have evals by everyone we feel we need on one day!!!!
I'm thrilled that Lauren's appointment went so well!!
Susan
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Post by Googsmom aka Jennifer on Feb 15, 2008 21:05:52 GMT -5
What is this clinic you speak of? Is it doctors? Will Brook need to go someday? I have never been told of such a clinic  Probally when she is bigger and in school? |
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Post by Renee' on Feb 15, 2008 21:11:41 GMT -5
You can go anytime. We went to the one in Houston. There are not that many of them in the US. The clinic gets everyone together that will need to evaluate your child. PT, OT, SPEECH and a Pedi Dr. that is an expert in DS. They make referrals and make sure you have had the needed tests along the way of development. You should have your childs neck checked. You should have them checked for Ciliac Disease.. You can find the list here: www.ds-health.com/clinics.htmWe had to wait a few months to get in. If you find one close you can contact them and they can tell you what to do from there. |
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Post by Googsmom aka Jennifer on Feb 15, 2008 22:34:11 GMT -5
Closest one is Montana. OMG!! Rediculous!!! I wonder if it's any different than the PT, OT, ST and Pedi that comes over to the house. I will call tomorrow and look into it. Brook will have her spine and neck x-ray'd at her 2 yr old chk up and we already thought of the Ciliac test but doc said just try this and that and she is "symptom" free as of this minute. Thank you Renee' and i'm glad you appt. went well  |
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Post by Debbie on Feb 17, 2008 21:04:46 GMT -5
I guess they don't have any for adults. I think I found a few of them not many.
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Post by Jackie on Feb 20, 2008 10:10:30 GMT -5
Isn't the one in Texas in Dallas? I really don't know much about it...don't know anyone who has gone there.
Debbie there is one for adults but it is for adults in Illinois. The authors of the Mental Wellness book run it.
Jackie
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Post by momofrussell on Feb 20, 2008 11:44:23 GMT -5
Googsmom... the clinics are nice but it's not like you can't get what your daughter needs from JUST a ped and specialists that you already may have. The DS clinics are like a "one stop shop" kinda thing but it's by no means vital that we all go to a DS clinic. Some don't even take their kids to them at all. They are nice and convenient but if you are getting all you need from your ped, then don't think you are missing out on something.  We had never been to one in CA and then when we moved out to the midwest, St Louis didn't have one at the time. They now have one and we went once. WE went because I wanted a Devel Ped and to talk to an SLP. It was great for us because it helped me in the IEP's and keeping our team on track with Russell and his DX's. Then they gave me some referrals to like the ENT and the GI doctor. We did the ENT but didn't do the GI doc (it was just for a check up). But it's not like I couldn't get those referals from our ped we already had, they just choose to refer me themselves. The year later I made another appt for our yearly visit to the devel ped at the clinic and guess what? She was no longer there!!! They had no devel ped so I stopped going. I was a bit disapointed but our ped's office has their own devel ped now and we go see her and we love her. I've had some "walls" hit by trying to find a good doc for devel purposes for Russell. I don't feel we need the clinic now, at this moment. So... in my long windy rambling fashion..... don't panic! Renee.....glad the appt went well!!!! Sounds like she is doing awesome! A. |
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Post by Renee' on Feb 20, 2008 12:14:56 GMT -5
We went to the one in Houston.
I love the fact that they gave us some ammo for Lauren to have more speech therapy at school. They also said she needs more typical peer intervention. My Pedi doctor wanted Lauren to go.
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Post by katiesmom on Feb 20, 2008 13:42:54 GMT -5
Googsmom,
I'm with Russel's Mom on this one. If you have a competent team already, there really is no reason to go to a DS clinic. We went once when Katie was little and it just ended up being a long day that wore us all out and they didn't tell us a thing we didn't already know through our local pediatrician, OT, PT, and ST.
If you download one of those medical checklists and make sure your daughter is screened for things on that list and follow the time-line then you should be up-to-date with everything.
Deane
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Post by Jackie on Feb 20, 2008 14:10:45 GMT -5
Em is 27 and we have never been to a DS clinic...never saw the need to. I prefer to use specialists in the areas of concern. Any of the physcial problems Em has had are not really related to her DS...just the same kind of physical problems others have so like to go to the best in that area of specialization...i.e...cardiology, GI, dermatology, endocrine. I think a good pediatrician for younger children can handle or give you referrals for most areas of concern.
Jackie
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Post by Googsmom aka Jennifer on Feb 20, 2008 15:19:12 GMT -5
Thx girls. That is what they said when I called to ask some questions. I just love all Brook's girls and it seems that they try to stay one step ahead of me on referal stuff and doctor/test stuff cuz I think they know I will eventually ask about it. I think we're doing good as of now on all the "stuff". Thx again |
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Post by momofrussell on Feb 20, 2008 15:57:01 GMT -5
and you know.. I wanted to come back and say I am sorry if I sounded like I was "anti" DS clinic. I am not and we did love going when we did... I just wanted parents to understand that you don't HAVE to go Ok.. had to just clear that up LOL A. |
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Post by Chris too on Feb 20, 2008 17:16:01 GMT -5
Ours in Indy includes ENT, cardiologist, pulmonary, and any other specialists (nutricianist, etc) that your child needs. So you go to the clinic, check in, & all of the specialists that your particular child needs to see, come to you in your room. No traipsing all over the hospital, no waiting for appointments, just see each specialist in turn. And all of them see the Dev. Ped. in charge. The lab work is done just before you leave (in the lab, rather than the room, but still convenient).
Very cool. And it's good to know that nothing is being overlooked.
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Post by momofrussell on Feb 20, 2008 17:24:49 GMT -5
Chris, that is how our ST. Louis one is done too and we all have to see the genetist in charge each time... she came in for 5 min and left LOL
A.
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Susan, Proud mom of Michael (32), Justin (25) Emily (22ds), and Jordan (20).
Probally when she is bigger and in school?
]
We had never been to one in CA and then when we moved out to the midwest, St Louis didn't have one at the time. They now have one and we went once. WE went because I wanted a Devel Ped and to talk to an SLP. It was great for us because it helped me in the IEP's and keeping our team on track with Russell and his DX's. 
