We went to St. Louis Children's Hospital yesterday to get Sophia checked out. We saw 3 doctors and a speech therapist.
Here's the skinny:
Sophia has misalignment of the left eye due to a weakened muscle that she's had since birth. She is so smart that she has figured out that when she tilts her head, she can correct her vision as she's likely been seeing double. She'll need Strabismus surgery (eye muscle surgery) and while they're in there they'll do a nasal lacrimal duct surgery on both eyes as she has had lots of yucky discharge for a while. Dr. C said, "I see she tilts her head." I said we started Physical Therapy for Torticollis around 6 months of age. She said she just recently gave a talk about misdiagnosis of Torticollis when it's Strabismus to a group of peds docs. PHARFIGNEWTON!!! The good news is that her vision is very good regardless.
Next, her new GI, who he says has spent a lot of years working and studying Hirschsprung's disease, is especially concerned that her constipation may be caused by this. She needs a rectal suction biopsy and then we'll go from there. I did a google search for him and Hirschprung's and he's listed many places. In layman's terms, this is when there are missing nerve cells in the bottom segment of the intestines. This causes the stool not to move all the way through the end of the intestines. Repair is done by cutting out the effected part of the intestines and reattaching it to the anus. (Her duodenal atresia was the uppermost intestine that was blocked and was cut out and reattached to the stomach.) In the general population Hirschprung's occurs in 1 in every 5,000 but with Down syndrome it is 1 in 75.
We're scheduled for the biopsy on May 8th and pre-surgery appt. with opthomology on May 9th. Eye surgery will be May 19th. We'll have to wait and see what the biopsy tells us about the next steps there.
For you detaily people; click on the bold type for information on Hirschprung's disease,
and on Strabismus, and on Nasal Lacrimal Duct Surgery
Here's the skinny:
Sophia has misalignment of the left eye due to a weakened muscle that she's had since birth. She is so smart that she has figured out that when she tilts her head, she can correct her vision as she's likely been seeing double. She'll need Strabismus surgery (eye muscle surgery) and while they're in there they'll do a nasal lacrimal duct surgery on both eyes as she has had lots of yucky discharge for a while. Dr. C said, "I see she tilts her head." I said we started Physical Therapy for Torticollis around 6 months of age. She said she just recently gave a talk about misdiagnosis of Torticollis when it's Strabismus to a group of peds docs. PHARFIGNEWTON!!! The good news is that her vision is very good regardless.
Next, her new GI, who he says has spent a lot of years working and studying Hirschsprung's disease, is especially concerned that her constipation may be caused by this. She needs a rectal suction biopsy and then we'll go from there. I did a google search for him and Hirschprung's and he's listed many places. In layman's terms, this is when there are missing nerve cells in the bottom segment of the intestines. This causes the stool not to move all the way through the end of the intestines. Repair is done by cutting out the effected part of the intestines and reattaching it to the anus. (Her duodenal atresia was the uppermost intestine that was blocked and was cut out and reattached to the stomach.) In the general population Hirschprung's occurs in 1 in every 5,000 but with Down syndrome it is 1 in 75.
We're scheduled for the biopsy on May 8th and pre-surgery appt. with opthomology on May 9th. Eye surgery will be May 19th. We'll have to wait and see what the biopsy tells us about the next steps there.
For you detaily people; click on the bold type for information on Hirschprung's disease,
and on Strabismus, and on Nasal Lacrimal Duct Surgery
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2 comments:
Well done! I'll come give you tips and eat cake in a few. :o)
Thanks for the help! You're so smart.
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