Sunday, June 28, 2009

Down Syndrome Clinic Recap

Our appointment at the Down Syndrome Clinic went well. We are awaiting a written report and will determine if it was "worth it" when we receive that. However, we were glad to have gone and to talk with people who are so knowledgeable about DS.

Here's a summary:

Audiology - We started with yet another hearing test. I haven't really written about it, but we are still unresolved with Nate's hearing. We've now had 5 hearing tests for him (3 of them being 4 hrs long) and don't know what his hearing truly is. We've had anywhere from mild hearing loss in both ears to normal range in both ears. We've suspected that there is some loss as Nate really only responds to loud sounds. The test on Friday confirmed that there is some loss and that we need to do a sedated test. So, we'll go back soon and have another long test while Nate is put under. From there we will know if he needs tubes (very likely) and hearing aids (also likely).

Speech Therapy - We met with an ST who mostly asked us questions about feeding and took a lot of notes. We'll be starting solids soon, so we did ask her some questions about that - we weren't all that impressed with this part of our appt, but her written report may prove us wrong. We'll see. She did confirm that we need to begin Speech Therapy as soon as possible (they work on Oral Motor skills, developing the muscles in the face and tongue and helping with tongue control). Our insurance does not cover ST until Nate is 2.5! So, we need to look into community resources to see what other options there are for him. We also need to push more with our Early Intervention team to make sure we are getting as much as we can there.

Neurology - The head of the Down Syndrome Clinic, Joseph Pinter, met with us next. He has worked with DS for 13 years. He started out as a Pediatrician, went back to school to become a neurologist, did research on the brain of mice who had DS and has done a lot of brain imaging of children with DS. He was very passionate and wanted to get and give as much information as possible during our hour together.

We were supposed to end with Occupational Therapy (to assess gross and fine motor skills), but Nate was passed out at this point as it had been 4 hours of poking and prodding. We feel the most confident about his physical progress, so missing this part (and not having to pay for it) was fine with us!

Overall, the team seemed to think Nate was right about where he should be. He is moving and interacting as they would hope. Our main thing is to get the hearing figured out and get what he needs to hear as that is so critical in speech development. We will go back to the clinic when Nate is a year and then yearly after that. The idea of the clinic is to be a resource. They can evaluate Nate and give us written reports to give to our pediatrician and early intervention team. It feels good to have a team of experts to access.

So, our next few months:
*Sedated hearing test
*Sedated procedure to put in ear tubes
*Get hearing aids
*Thyroid test (people with DS tend to have underactive thyroids, so we'll have this tested yearly)
*Oral Motor therapy session to help us make sure we are approaching solids properly
*2nd Echocardiogram to make sure the valve in his heart has closed. If it hasn't, he will need to have a procedure done to close that

I really feel for people who raise children with special needs without the help of family or friends. My mom has been so helpful in watching Cody whenever we need to take Nate to appointments. Dragging Cody along to all of these would make things a lot more stressful. We've also had so many friends and family members help in many other ways.

If you know someone who has a child with special needs and have a little extra time or energy, I encourage you to reach out and ask how you can help. Or, better yet, just tell them how you are going to help (ie/ "I'd like to watch your other child during your next appt, when is it?" or "When is your next big appt day? I'll bring you a dinner that day." or "What night can I come over this week so you can have a date with your husband?") No matter how old the child with special needs, there will always be extra work and juggling with the other kids. Working together can really ease the burden!

Thanks for reading our blog! We'll be sure to keep you updated as we learn more about Nate's hearing.



  1. Just found your blog. Our little guy with Ds was born 1/29/09. I know what you mean about not having to drag siblings to appts.! Ugh, I can't imagine what a nightmare that would be! Glad your visit went well!

  2. I also agree with you about needing friends and family more than ever. It is so crucial. I couldn't do it without them.

  3. Sounds like an amazing appointment...keep us posted on the summary.

  4. What a cool thing... to have a Down syndrome clinic nearby. Life is certainly easier for us with the help of my mother-in-law who is always more than willing to help when she's available. I'm going to work on your DS blogger ID badge for the Convention tonight. If you send me your email address, I can let you preview it. Thanks! Monica

  5. We were pleased with our meeting with OHSU's Down Syndrome Clinic for Charles-Olivier, our 21-month old son. We were visiting Oregon on vacation from where we work with World Vision in Democratic Republic of Congo, and were please with the at once professional and enthusiastic attitudes of the vast majority of the staff we met.

    Hats off to Dr. Pinter for the initiative of this holistic approach to DS.