DS Clinic....when....why?

[Chester]

I don't want to Hijack the other thread on where there is a DS clinic in Michigan, but that got me wondering.

Our little guy just turned four. Everything seems to be ok. I wish his speech were further along and I've now got questions about his sleep because of another thread here in unoland, but nothing earth shattering at this time.

Since our move to KY, we are less than 1 hour from Cincinnatti. So, I"m feeling like I should take the little guy in.....BUT FOR WHAT?!

Is this in addition to the reg. ped's appointment or is this instead of peds or do you just go for a specific reason.

Is it a good idea to go now and get baseline info just in case there is an issue down the road.

Hmmmmm, maybe I should just call the clinic. But you guys with experience usually have better answers than the people over the phone!

Dawn

[meghans_mom]

Dawn
we don't take MM to a specific DS clinic but we do take her to a behavioral/developmental pediatrician once a year in addition to her regular yearly ped check up. the guy is a specialist in behavioral/devel disorders or whatever and i find it very very helpful.
she's gone since she was about 1 1/2 yrs old - and i sort of use it as a guide as to what her strengths and weaknesses are, is there anything i should be doing, are there any things that her regular ped might not notice that i should be aware or worried about, etc.
i believe the DS guidelines recommend seeing a beh/dev ped once a year but don't quote me on that.
check if they take your insurance, etc because the appointments are usually quite long & detailed and EXPENSIVE if not covered.
good luck! laurie

[momofrussell]

LOL I love the fact we are better then making the phone call!!!! YEAH for UNO! heehee

OK... I never took Russell until last year. I always thought it was neat some cities/states had DS clinics then we moved to St Louis and they didn't have one anymore... they got rid of it. Well, then last year they started one up again at the Children's hosp. Now, Russell already sees a ped, a ped neuro and a ped opth. I also had been for a private ST eval for and aug comm device at the children's hosp. BUT... I really wanted to make sure I was headed in the right direction with Russell and his developement... for us it was for educational purposes I guess. Our ped is good and the neuro is too... but I started to have devel questions in my mind that I felt could best be answered with a devel pediatrician. So... that is why we went. And I wanted to see an SLP for speech/language in general, NOT just for an aug comm eval.

What's nice about these clinics is they are a one stop shop for alot of families that don't always have that... all the docs you need, all the specialists... are right there. Now for us, we have a satelite docs office out of the children's hosp that is kinda like that already.. NOT DS specific... but I do already have that. But it's nice to have a once stop shop kinda thing. And for us we really needed to make sure there was nothing else going on with Russell.

It really helped us plan out his IEP and replacement. It helped us drive home my feelings I have already and about his IEP goals, his lack of language ect. It helped us to have a devel ped say "your son has a HUGE LANGUAGE DEFICIT THAT THE SCHOOLS NEED TO ACKNOWLEDGE"

They then suggested a couple docs for us to have check ups at... the Ped GI (it's been a few years so it's time) and the ENT.. which lead us to the T&A surgery We will probably go yearly to there.... but if I don't make it there... our ped office JUST brought on a devel ped to the office, so I am happy about that too!

A.

[ALLISA]

Hey...throwing in my two cents.....

Erin went to Ds clinic every 6 months for the first couple of years of life.....I took her becasue I figured these guys were the "expert" experts and would know if she needed more services, or have suggestions on how to further her development.....well......noticed I only took her a couple of years.....

For us and the clinic we went to (Boston Children's Hosptial) with the Famous Dr. Crocker....whom every mom with a child with DS absolutely LOVES....but I don't get the fascination........

They would ask a TON of questions and write down everything I said. Then in a few weeks I would get a very nice typed report WITH EVERYTHING I TOLD THEM.....nothing new, no insight, no recommendations.,....just my words typed neatly in case I forgot what I said.

It was thorough....we saw ST, OT, PT, dietician, Audiologist and BT....and I would get a nice fat report from ALL of them....but didn't seem real useful to me.

Now that I sound like the worst complainer EVER.....I will say that I have stayed in touch with the Parent Co-ordinator of the group and if I ever have a question I call her to ask and she sends out notices on meetings, seminars and other DS realted things.

My advice would be to try it once and see what you get out of it....I thought it would be a "test" of EI...and I'd see if EI was giving us "adequate" services or should I push for more. I know the one at Children's only followed kids until the age of 3...not sure if some go beyond that age.

Allisa

[laurasnowbird]

Allisa:

"just my words typed neatly in case I forgot what I said"


Oh, my, God!

ROTFLMAOPMP!!!!!

[andrewsmom]

Ohhh...I love this thread and can't wait to read more replies! Dawn...I was going to post about this myself!!! Great minds think alike!!

We have not taken Andrew to a DS clinic but have been thinking about it lately. Our reason for wanting to go is we feel like we are missing something with Andrew. We don't like the fact that we didn't have his hearing tested until 2 weeks ago (since the one he had at birth), We STILL have not been told to get his eyes checked (yup...made the appointment) He's 2 years old and still spits up (Ped keeps telling me not to worry about it...hmmph..too late!) He still doesn't make eye contact very much...uggg my list could go on and on and on...LOL!

So I guess what I'm looking for is someone to say "hey...try this....have a test for that...keep an eye on this...etc. I just feel like I'm missing things with him and nobody is pointing us in the right direction. So we're trying to keep up on our own...which isn't easy with 3 other kids...kwim? Maybe a clinic could help keep better track.

But I guess in answer to your question ....these are the reason's I would like to take Andrew to a DS clinic. I think everyone may have slightly different reasons for taking their kids or not taking them. Hope this helps!

_trisha

[CC]

"Is this in addition to the reg. ped's appointment or is this instead of peds or do you just go for a specific reason."

For us it was in addition to the reg. ped's, actually our ped is the one that recommended we take Chris to the DS clinic by us a few years back and it was for specific issues that Chris was having that were not the regular Ped's expertise (sp)

Chris has many good Docs. but what I have found thats good bout the DS Clinics is that they have much more knowledge bout DS in general, KWIM.

But for me unless there is an issue I personally see no reason in going, buts thats just my opinion

CC ~

[chasesmom]

Laurie...where in the world or how in the world did you find a developmental/behavorial ped for MM? I think it is just this stinky state that dont have squat!!!!!!!!!
Dawn, "hijack my thread" LOLOL, I liked that term. Please hijack away. I never wanted to really take Chase to a DS clinic (as obviously we dont have one here in Mich) until we came across some issues and behaviors no one has the answers to and we cant find a qualified specialist here. If not for that.... I wouldnt even worry about a clinic unless of course you are close and then I say, why not access the best if you have it.
hugs, Robin

[Emilysmom]

We had never even heard of a Ds clinic until Emily was around 10!! We had friends who took their daughter to the one in Nashville when it was just first opened, and they raved about it. It was funny because I thought "Emily is healthy, school is going well, her heart is fine, she's getting therapies in school..........do we need to make an appointment at all"?? But, I called and scheduled one anyway; thinking it would be good to have an introductory appointment, in case we ever needed this clinic. It was a GREAT experience. It took us the better part of one whole day to see all the different docs. They brought in a PT/OT/ST, a cardiologist (seems she had a PDA at birth, so they did an echo to make sure that all was ok there.............no one mentioned this to me when she was born at all!), a developmental psychologist, we had an eye exam and hearing testing, and a good physical by the doctor. She had celiac and thyroid testing on that day too. Our regular family doctor has been good for Emily when she has had sinus problems, etc but she has never been very knowledgable about anything related to Down syndrome. I remember telling her I was concerned about sleep apnea when Emily was about 4, and she said she didn't know of any connection between Ds and sleep apnea! So, we have gone to the Ds clinic for the past few years, and it has been a good experience for us. For this most recent issue, I feel very confident that this psychologist we saw was the BEST person we could have seen.

I have heard some great things about the Ds clinic in Cincy! I have attended a few seminars where some of the docs from that clinic have been the speakers. Also, Dawn..........I will PM you about a really good pediatrican I know who lives in your area.

Susan

[meghans_mom]

Robin - our hospital here has a department but the way I found him was actually thru MM's school. This guy comes to her school twice a year and you can see him at the school instead of hauling to the hospital and all...I figured I'd just try him but we lucked out.
Have you checked the peds dept at your major hospital? hugs, laurie

[wrblack]

Oooh, I just had a scary thought--aging out of CHOP. Guess we'll have to face that someday but think we've got several years left yet.
Short answer to this question, I think, is just making sure you don't miss anything important and useful for arranging and coordinating tests, procedures, services, recommendations, etc.
Charlie's pediatrician is a pediatrician/neonatologist. He was the neonatologist in charge of the NICU where Charlie lived for the first 10 weeks of his life, included a couple of eye surgeries and a couple of transfusions. Dr. Harry is great, very good doctor and a very good man. Early days Charlie wasn't gaining to suit Dr. Harry, so Dr. Harry suspected pyloric stenosis and ordered a barium swallow. What didn't come flying out where they put it in, shortly came flying out the other end, test indicated a good, clear, open GI tract. And Charlie started feeding and bulking up better. I, always the smartass, asked Dr. Harry if he were going to write a paper on the therapeutic value of barium in the care and treatment of premature infants with Down syndrome.
Just before Charlie graduated NICU, the NICU nurses were flapping about a baby being delivered with trisomy 18 and fatal heart defects. The nurses shouldn't have been talking in front of parents, of course, but, hey, NICU is a nurses world, don't mess with them. Anyway, one of them said something to the effect that maybe the baby wouldn't survive long enough to come to NICU. Other nurse said, are you kidding, Harry's on the case. Like I said, good doctor, good man.
Dr. Harry, though he doesn't specialize in Ds, has several patients with Ds, is very knowledgeable, keeps up with the literature, very good with following guidelines, ordering appropriate tests at appropriate times. Even so, when Charlie was about 2 I got an appointment with one of the developmental pediatricians at CHOP, just wanted to make sure we weren't missing anything important and to get the take of a developmental specialist. We saw the developmental pediatrician who came to local CHOP satellite office. About the time she left CHOP, went to Pacific Northwest, the T21 program was starting up. Got an appointment for Charlie to see Dr. Pipan, clinical director of the T21 program. She's the one who gave us the autism dx. We should be seeing her about every 6 months, but, because of the time it takes for us to get through the "to do" list she gives us at each visit, it's working out to be more of annual visits. I think she is excellent, and think we've had remarkable good luck in picking doctors.
Just our experience, your mileage may vary.
Cheers,
Bob

[Chester]

WOW! See I told ya that your knowlege is more valuable than making a phone call. At least now I can make the phone call and know what I would like to see happen!

I decided that I will....FIRST~ Check insurance coverage...Thanks for the heads up! And then call to book an appointment. I guess I now see it as a proactive way of making sure nothing is being forgotten or is missing. We may learn something or we may not, but at least I won't be kicking myself 5 years down the road....if only we would have tried the DS clinic.

Since I'm not in a hurry, I'm going to be chosey and pick a time of year that doesn't inconvience the whole family....sounds like quite a day!

Thanks, you're the best!

Dawn