Thursday, February 25, 2010

Visit to the Down Syndrome Clinic

A couple of weeks ago, Brennan had his second appointment at The Down Syndrome Clinic at Boston Children's Hospital. The visit to the Clinic consists of consecutive appointments with a pediatrician, nutritionist, physical therapist, speech therapist, dentist and audiologist. I think of it as a double check of the services and care he is already receiving. Our first appointment was at 8:30 and we finished around 1:30 - so it was a full, but informational day.

It was the first time we had met with this pediatrician and I was really impressed with her. She did a thorough history of Brennan's life thus far and took the time to answer all of my questions. She made me feel like my questions were important and took the time to answer them all completely without me ever feeling rushed. We talked about GI scopes, sleep studies, ENT appointments, orthotics, constipation, breastfeeding, dry skin, IEP's, sign language.....we really covered a wide range of topics. Based on Brennan's history, she would not recommend a GI scope, sleep study or additional ENT appointments at this time. She did think it would be beneficial for Brennan to be evaluated by an orthopedist to see if he would benefit from orthotics - so that's on my list. She also gave suggestions for foods that might help with Brennan's occasional constipation (blueberries, grapes, ground flax seed). She also voiced her frustration at the medical community telling new mothers that their babies with Down syndrome would most likely not be able to breastfeed (as was the case when Brennan was born) since it seems that, more often than not, mothers are able to successfully breastfeed their babies with Down syndrome. She said this is one of the many myths within the medical community that she hopes to correct. She also recommend ceraVe cream for Brennan's dry, winter skin - which we haven't tried yet, but will. And then talked at length about signing, sequencing, and IEP's. She told me about a cool website called signingsavvy.com and encouraged us to use signing as well as picture books and sequencing at home. Then she gave tips for our IEP, such as making sure he has the support he needs, making sure sign language is supported in the classroom and emphasized that is it important to be as specific as possible with the terms of the IEP. She ended the appointment with a thorough physical exam.

Next, we met with the nutritionist. I gave her examples of Brennan's daily meals, snacks, foods he likes and foods he doesn't like. She thought he had a well balance diet, but that he should be drinking more fluids during the day (he needs 33 ounces a day and usually has about 24). Also, Brennan currently drinks soy milk instead of cows milk, so she said to make sure the soy milk is calcium and vitamin D fortified so that it is providing the necessary nutrients. She also suggested fruit-eze to help with his constipation and possibly miralax if the fruit-eze, fruits and increased fluids didn't help.

Our next appointment was with the physical therapist. Brennan was true to himself and totally resisted putting pressure on his feet. Therefor, she wasn't able to assess his need for orthotics but agreed that we should see an orthopedist and thought that he probably would benefit from having them. She gave me suggestions for getting him to work on being on hands and knees (since he has perfected the army crawl and sees no need for doing it any other way!). Most of the suggestions she gave were things Brennan's PT had already suggested, but I was happy to have affirmation that we were on the right track and that she would be doing things largely the same way that Brennan's PT is.

Next, we met with the speech therapist. I was so looking forward to this appointment and ended up being totally disappointed with it. The appointment consisted of her asking me "yes" or "no" questions from a pre-printed questionnaire. She didn't even interact with Brennan. Basically, she could have sent the questionnaire to me at home and saved us both alot of time.

Then we went to see the dentist. This would seem like the least interesting of the appointments, but it was actually quite interesting. The dentist had last seen Brennan when he was about 8 months old. At that time, she told us then that he had an under bite and that he would most likely need a palate expander at some point to correct it. She encouraged us to continue letting Brennan use his pacifier as this might help correct his under bite. Well - at this visit, she said he no longer has an under bite. I was so surprised and really pleased since the palate expander sounds painful. At his last appointment, she also said that he had a high arched palate and this time said that he doesn't. I contribute this to using the straw cup to help him learn tongue retraction - which in turn helps to shape the palate correctly (as noted in Sara Rosenfeld-Johnson's article "The Oral Motor Myths of Down Syndrome"). Then she told us that we could switch to "real" toothpaste (instead of the baby/training toothpaste) when he's 24 months old and also said we should have him face the mirror while we brush his teeth so he can see what we're doing which will help him as he starts learning to brush his teeth by himself.

Whew! Lastly, we went to see the audiologist who said Brennan's hearing was totally clear in his right ear but she was not able to get a clear reading on his left ear, most likely due to a recent cold. So, we'll go back in 6-8 months to have his left ear re-checked. Brennan actually fell asleep while we were waiting for the audiologist to set up and I honestly could have done the same. It was a long day but totally worth the time spent.

7 comments:

Kelly said...

Sharon, glad to hear that all in all it was a good visit at the clinic. I am going to have to check out he ceraVe cream as Landon also has that dry winter skin. Landon goes back to Boston in July for his 2nd clinical. He resists putting pressure on his feet also. No problem when he is jumping on your lap, but wants no part of it when he's on the floor. Very frustrating. I thought he would be a little futher along than he is now (hoping water therapy will help with this issue). I'll be posting on that soon. I wonder if orthotics will be in his future too. It appears Landon has very loose ankles. I felt the same way with speech. I am hoping it's more hands on the next time we go. I also look at it as confirmation that Landon's services are helping and that he is getting what he needs......sort of like a second opinion.

Erin said...

How nice it must be to live close to a place with a clinic. Ours is still in progress. Sounds like everything went really well, yay!

Jessica said...

Wheww! It seems like a marathon of appointments. I'm glad everything went well. My little guy was very resistant to putting pressure on his feet for the longest time too, but he's doing great now.

Megan and family said...

There were so many helpful things in this post! Thanks! Gwyneth is turning 2 in March and we have her first dentist appointment. Also we'll be asking her pediatrician for a prescription for orthotics because her ankles roll in and she locks her knees.
It's too bad that the speech therapist wasn't more helpful! We're planning on adding speech therapy to Gwyn's IFSP when we review it in April. I'm really looking forward to it. She's doing more and more sign language all the time now. She loves the Baby Signing Time DVD, but I'm glad to get another helpful resource (signing savvy) from you.
Take care,
Megan

Cheri said...

Thanks for sharing this...it was so helpful! I wish we had a clinic near us!

Eric and Crista said...

Hi Sharon - It's great to hear about your visit. We are going next week!
We've wondered about orthotics too - though Nate doesn't really stand yet without a ton of support.
Are you going to the conference? Eric and I are both going, but will probably leave Nate with his grandparents - It could be a long day for him.
Looking forward to catching up!
Crista

Elizabeth said...

Every time you write, I imagine your words as if the scenes are happening in front of me. Just like as I've wanted to be part of your family. I can clearly see Brenan doing the mundane things he should be doing as a real specially gifted kid. I wonder how that cute pacifier looks. I want to help him to overcome the self-biting, for him to fasten his own tongue and deliver words correctly, he should do this.

Good thing you concentrated to one over the lists of dentists. Lake Forest, Illinois in my time (it was mid 70's) had only one dentist for the specially-abled, so it would be hard for us to take consultations for a friend in need, but now, they are fast-growing and still numbering, which actually is a good thing. And it is a point of ease for you for you don't have to search and search over the numbers, they're just aplenty residing nearby. Dentists, Lake Forest's topnotch profession, are making its way to reach and help the people who really need it, and I think they've already achieved it.

I will continue reading your posts for it molds me to be a better grandmother to my grandson. And one thing I've learned, that burning time nowadays could be this so inspirational. Thank you so much.