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Post by Ericsmomma on Aug 8, 2007 21:21:41 GMT -5
I've been reading alot lately about the dual diagnosis of Down Syndrome and Autism. Eric has displayed alot of autistic tendencies, especially this past year. I guess I kept pushing it out of my mind...I even blew a gasket when hubby suggested that maybe he IS autistic! I really didn't want to deal with it.
And maybe he's not...but my question is, who gave your children the dual diagnosis? Who should I be taking Eric to see? A neurologist?..developmentalist?...down syndrome clinic? I will talk to my pediatrician next week about my concerns, but I'm thinking the experiences from people on this site will be beneficial.
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Post by CC on Aug 8, 2007 21:57:40 GMT -5
Dolly for us we didn't get the DX till Chris was older BUT it was because sadly it took many years for us to find the right person that had enough knowledge bout the dual. Colin and I always knew it was probably the case but most all just kept saying its the DS. Anywho for us how it went is I one day said to my PED LISTEN to me something is not the norm here even the norm for DS. She listened did research and then called me and told me to get up to CHOP to see Dr. Pippin (sp?). We did just that and Dr. Pippin said "She was shocked no one has told us but yes Chris also falls under the ASD". She seems to know her stuff well even if I was not that impressed with CHOP  According to Dr. Pippin she believes many kids with DS fall under the dual but most Docs. just don't know enough and blame everything on the DS part. So just my thoughts but I would ask your Ped to research and find the best Ped Behaviorist in your area that has knowledge bout the Dual. Not sure if this will help but check it out www.altonweb.com/cs/downsyndrome/index.htmGo down the page a bit on the right side is lots under "Focus on DS & Autism" CC ~ |
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Post by momofrussell on Aug 9, 2007 7:27:46 GMT -5
We saw a ped Neuro because he was THE guy in the STL area that everyone knows to refer to for Autism and the spectrum. So, we went there. You CAN ask your ped who'd be good for this..it needs to be someone that KNOWS Autism.. and should know DS. I also read to see a psychiatrist and/or a devel ped... I think it depends who your ped might know that could help you. A DS Clinic is a good place too.
Good luck Dolly... and I finally PM'd you back... sorry I didn't sooner.
A.
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Post by AnnieC on Aug 9, 2007 8:59:18 GMT -5
We expressed our concerns to our pediatrician & he suggested a developmental psychologist. We were already in ECE & they set up everything for us. The Down Syndrome clinic at Children's Hospital in Columbus would be able to help you out as well....you aren't very far from Columbus are you Dolly? One of the physicians in the clinic actually works in the autism clinic as well, I believe it is Dr. Nash. They have a ton of information & links for you. Let me know if you need any numbers or help or anything. Good Luck!
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Post by wrblack on Aug 9, 2007 9:47:03 GMT -5
Or you might consider Cincinnati. One of leading experts on Ds-autism is Dr. Bonnie Patterson. She is with the Thomas Center for Down Syndrome at Cincinnati Children's, phone 513-636-0520 www.cincinnatichildrens.org/svc/alpha/d/disabilities/clinical/down-syndrome-center.htm But I think any doctor qualified to make such a dx would do, though I would be looking for a behavioral developmental pediatrician with some experience and interest in this area. We saw Dr. Pipan at CHOP. Had earlier had a brief visit with the other leading expert on this combo, Dr. George Capone of Kennedy Krieger in Baltimore. The seafood buffet at Phillips in the Inner Harbor is pretty good, if you want to travel a bit. I would hope that Eric just has some autistic-like behaviors, like a lot of kids with Ds do, and not really belong anywhere on the autism spectrum. And it is a spectrum. But you know Eric much better than I. Sorry we've never met. And if you have some concerns, then I think would be very good idea to follow through and get this checked out. And if you're developing an interest in this topic, you might also want to check out the Ds-Autism group, groups.yahoo.com/group/ds-autism/Regards, Bob |
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Post by Ericsmomma on Aug 10, 2007 5:21:59 GMT -5
Thanks for all the info...I've made an appointment with a Pediatric Neurologist at Rainbow Baby and Children's Hospital in Cleveland. Around here, he is the go-to guy for autism.
Only problem is our appointment is in November! Thats one busy doctor! I'll be talking to Eric's pediatrician too...maybe she'll have other suggestions. On a happy note, Eric saw his Cardiologist yesterday for his yearly check-up (he has a small "hole" in one chamber of his heart)...his sonogram looked great..the hole is about "pinpoint size"...NO TREATMENT NEEDED!
And he said we could start coming every 2 years for a checkup, instead of yearly. Whooo-hoo!
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Post by ALLISA on Aug 10, 2007 9:04:37 GMT -5
Appointments are notoriously hard to come by....I waited TEN MONTHS for Erin's !! But once in, I've been able to get followup appts, etc extremely quickly.
In our case, they do the evals only one day a week with a team of doctors, that is why those appts take so long.....
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Post by wrblack on Aug 10, 2007 9:14:24 GMT -5
That's great news from the cardiologist!
And November will be here before you know it. Autism is not likely to come nor go until then.
And when you do get this checked out, one thing to remember is that Eric will still be Eric. You probably already knew that, but I was trying to explain something of that to another dad just a couple of weeks ago. Snip from an email, "There have been occasions when we have taken Charlie to CHOP, and the visit with Dr. Pipan when we picked up the autism dx was one of them, where I pretty much said to myself, oh well, the professionals and specialists can hang whatever diagnosis, terms, descriptions they care to on Charlie. Important thing is that at the end of the day I'm the one who still gets to take him home, and what a blessing, privilege, and honor that is. "
Cheers,
Bob
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Post by momofrussell on Aug 10, 2007 10:43:48 GMT -5
WONDERFUL! And WONDERFUL on the heart news!!!! Keep us posted!
Our ped neuro changed how they did their appts for this reason. Now it's wacky, let's say you want an appt on a certain day? You have to call TWO days before that date and call and ask for an appt.. it's whacky! I forget they do this and it messes me up! I am good for like a few weeks in advance.. not two days!
A.
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According to Dr. Pippin she believes many kids with DS fall under the dual but most Docs. just don't know enough and blame everything on the DS part.
