Yesterday we had our first visit to the Ds clinic in Houston. It’s the only one in any neighboring big city in our area. When we found out Eli would come to us with Ds, we were directed toward this facility but when I called I was disappointed to find that there was a waiting list.
The facility is small and only has one doctor who specializes in Ds. The rest of her team consists of social workers peditricians and therapists.
The week Eli was born, I called and put him on the wait list. A year later we were finally able to make an appointment. Crazy.
It was a good appointment and the doctors addressed all my concerns- thyroid, growth, OSA, milk, allergies…blah blah blah They were very impressed with him- I was a proud mama while all the doctors paraded in to check him out. 🙂
And it’s one-stop shopping- all the specialists he needs were in one building. Eli was officially evaluated too which was nice. I quit paying attention to milestones and ECI never updates me on where he is so it was good to know. They were very impressed with Eli and what he could do. He has some emerging skills that put him around 6 month milestones, but is also reaching 12 month milestones. He pretty much fell on a solid 9-10 months scale for his milestones. It stinks to know that he isn’t “on target” but it’s good to know where he is. We need to work on fine motor skills and mobility.
The doctor wrote scripts for ECI in an attempt to get more visits from our therapists so that is good news.
We are still waiting on Eli’s blood work from his thyroid and allergy testing.
I have heard varting opinions about going to a Ds clinic and at this point my opinion is “take it or leave it”. I think it’s an amazing resource and it’s great to go to a doctor that is currently researching Ds and working with the newest studies (Like the one awesome stuff currently going on at CHOP). She was aware that the Ds growth charts are out of date and in general it was just refreshing to work with her.
The downside is the wait…it’s not super helpful if you have to wait a whole year to be seen. All the suggestions she had for me to do (go to an ENT, have Eli’s eyes looked at, get a heart ech…blah blah blah) I had already done. It would be a huge disadvantage to someone who had not done any research and then showed up only to be bombarded with new tasks and doctors to visit.
Otherwise I think it is a great resource and I plan to continue to visit yearly but still primarily work with my pedi and naturopath.
That’s the latest new- we are busy prepping for Eli’s party. I have photos to edit and supplies to still buy- it’s gonna be a big party and we are super excited 🙂
Hope everyone is having a good week so far!!