Wednesday, June 2, 2010

Visit to DS Clinic Today

This morning Sweet Pea had an appointment at the CHOC DS Clinic.  This clinic pales in comparison to so many others across the nation, but it was nice to speak with one doctor who has a lot of exposure to DS and who knows more about DS and the ancillary issues that it can bring along.

The doctor loved how social Sweet Pea was and Sweet Pea was being a bit of a ham for her.  She had a British accent and her phrases were so cute that I think Sweet Pea was enjoying the novelty of it.  She spit up a number of times during the one hour appointment so the doctor would like us to let our GI know.  She says he might add another medicine to her Prevacid.  Her spit ups increase with her activity, but her activity is only going to continue to increase so we need to do something.  We see the GI at the end of the month so hopefully we can get some more answers then.

The two things that we really got out of the appointment today were a referral for a sleep study to check for sleep apnea and a referral for a swallow study so that they can verify if she really is aspirating.  Both have been things that Daddy & I have thought about, but hadn't pushed for yet.  It is comforting to know that we aren't loony for considering these issues and it will be better to have an answer once and for all.

For those that don't know, children with DS (and adults with DS as well) have a much higher chance of having sleep apnea.  Sweet Pea's slight snores, constant congestion and how a lot of the time she angles her head back as far as it can possibly go were the reasons for wanting the sleep study to be done.  This doctor recommended that all kids with DS have a sleep study done by the age of 4, but didn't want to wait for Sweet Pea.

You might remember that we briefly mentioned the swallow study last week after we had our appointment with the SLP.  The purpose of it is to determine if she is aspirating (breathing food/liquid into her lungs) and I believe to also determine what kinds of foods she does aspirate on since it isn't necessarily everything.  If she is aspirating, it can be very bad for her lungs.  Since she hasn't experienced pneumonia we may not have an issue, but pneumonia doesn't always happen when aspiration is just often does.

We are keeping our fingers crossed that both of these tests turn out to be a complete waste of time, but we will sleep better at night knowing that we didn't ignore something that should be looked into.  I have no idea how long it will be until these tests happen, but we will keep you posted.

Oh, and a few interesting "facts" that the doctor shared with us today:
1) People with DS tend to be really good at remembering dates.  Sweet Pea can be my own personal calendar...goodness knows I need one!  Looks like I might not be forgetting all of your birthdays a few years from now!
2) People with DS tend to be more prone to get periodontal diseases and cavities.  Let's hope not!
3) People with DS tend to be visual learners.  We already knew this one, but it's always good to have a refresher.  She says how they learn math and reading will be different so to keep that in mind.  Maybe that is why so many of our kids have such success with Baby Signing Time?
4) Kids with DS have a higher chance of falling into the autism spectrum.  She didn't see any signs of it with Sweet Pea since she was so social, but it was interesting to hear.  I had never heard it before, but know of a few people with dual diagnosis.  That would be tough!


  1. That whole duel-diagnosis thing... I've always thought that's where the old-fashioned assumption that there were more or less profoundly affected individuals with DS... I think the ones considered to be the most profoundly affected were simply autistic on top of the DS. (Just my non-scientific thoughts.)

  2. You are lucky that I wasn't at the hospital this morning or I would be very angry at you for not telling me you were coming to CHOC!!!:) I know you wouldn't have been able to bring Sweet Pea up but I could have run down to meet her. I didn't even know there was a Ds clinic there. Please give me more details. I knew there was one in San Diego but haven't been to it yet. Hope all is well.

  3. I didn't know that about increased risk for autism. interesting...

    Also, we requested a sleep study and they gave us a script for flonase to decrease the congestion. So far so good, so we haven't felt the sleep study was necessary. I hope sweet pea gets an easy fix too. :-)

  4. Sounds like a great appt. Hope the 2 follow up studies turn out to be nothing to worry about for her!

  5. That's interesting about the swallow study - our DS clinic recommended the same for Chase to see if he were aspirating but i wasn't sure whether to follow through ... Let us know how it turns out for your little one. Glad it was a good visit!

  6. It's good that you found someone knowledgable about DS, more than a regular ole doctor! :) I hope that a new reflux med will help your Sweet Pea stop refluxing. We are on so many meds for reflux and retching, it's insane!

    It sounds like you are really local, I know you visited Denise in the hospital and you mentioned the 405 parking lot. My husband sits for over an hour each way to work and back on it!

  7. If you ever want to talk don't hesitate to email or call me (email me and I'll give you my number). Chloe's had both a sleep study and a swallow study (a bunch of both actually) so we're kind of experts. She had severe obstructive sleep apnea at 5 months. She MUCH better now! Let me know if you have any questions.

  8. We have an appointment tomorrow afternoon at the CHOC Ds clinic. My sweat pea is now 5 1/2 years old. Please feel free to contact me for information on groups in the LA and OC areas. We have been on this journey a little longer than you and I have learned the most from other mommies. =D