Tuesday, March 30, 2010

Dr Duke

Well, we visited with Dr Duke today.

The short story, he agrees Landon's lambdoid suture is fused. He even gave us some copies of images from his CT scan, and it is very easy for us to see that the plates are fused on his left side.

The long story....Dr Duke's PA came in (after we waited for over an hour) and asked us what our concerns were. SERIOUSLY? (Let me remind you we have left numerous messages for both the Dr and PA. We also had sent the radiology report and CD of images to them and were told they had been reviewed. So, I was just a little annoyed when we were greeted as if our child had a cold or something). She looked at his head for a few seconds (maybe 30), felt around, and said he would be in shortly. Another 15 minutes later Dr Duke came in. He started by saying his head shape was very consistent with the shape you would see with positional molding (what he originally said it was in Dec 09) and asked if he was rolling and in what position he was sleeping. I told him Landon has been on his belly for months and we did encourage it around 4 months because he himself told us that keeping him off that flat side would help him head improve. (Shhh...don't tell anyone I let my baby sleep on his belly).He said that he believed Landon's head shape was in fact due to positional molding. He gave us many reasons to support his claim, which I will not argue. Landon's left ear (the side that has the flatness from the fused suture) is slightly towards the front compared to his right ear. In Lambdoid Synostosis, the ear on the fused side would be pulled towards the back and slightly lower than the other ear. He also said that you would almost always find a large bump behind this same ear. Landon does not have the bump. Basically these are the reason's he concluded we were dealing positional molding. He said he will see literally thousands of cases of positional molding to every case of Lambdoid Synostosis. He has seen 3 cases of Lambdoid during his 20 years of practicing neurosurgery. Then he acknowledged the CT and said that it is the "tell all", and it does show that Landon's left Lambdoid suture is fused. He suggested that the fusion was a secondary, independent issue to the positioning molding. When I asked if he was suggesting that the suture fused since we saw him in December, he would not say yes or no. I asked him what month of Landon's life was he thinking the fusion happened, and he could not answer. In my gut, I think it has been fused since birth, and it was just missed. We might never know either way.

Dr Duke seemed to be pretty consistent as Dr Fearon with the ideas of surgery and timing. Dr Duke and Dr Fearon both will let us use private blood donors and feel there is a benefit to doing so. However, Dr Duke uses screw and wires that would stay in Landon's head, Dr Fearon uses only material that the body will absorb. We feel more comfortable with the later. The good news....they both agree the best time for surgery is between 8-12 months of age. So, thankfully, our misdiagnosis has not harmed Landon. His brain is growing and as of now it does not seem to be under pressure from his skull. Thank god!

We have an appointment with Dr Duke's plastic surgeon friend on April 15th. We are not sure if we want to meet this doctor knowing we are very confident with Dr Fearon and his team. I am keeping an open mind, and might keep the appointment as just another resource.

We did not really learn anything new today. But, we are happy with how the appointment went. We needed reassurance that he believed the suture was in fact closed so we could let go of the false hope that we were misdiagnosed again. If he could have stayed firm with his originally thoughts, we would be dealing with much more stress of finding a 3rd opinion and visiting who knows how many more doctors until we felt convinced of what we were dealing with.

I am so, so, so thankful for our wonderful pediatrician who doubted Dr Duke's diagnosis. Duke is a wonderful hospital with some of the best doctors in the world. Our ped did not have to question his diagnosis like he did, and we will forever be grateful. I want to do something to show our appreciation. We are not sure what would be appropriate. A card seems so small. Maybe a gift card, flowers, I have no clue. I would love some suggestions if you can think of anything. Please leave a comment to this post below and let me know if you have any ideas of a way we can show our gratitude to our wonderful doctor! Thanks!

6 comments:

Machelle said...

send him a photo book of landon before and after surgery with updates along the way in the pages thanking him for his referral.

Missi said...

You guys could make a donation to a charity in his name. I'm not exactly sure how it's done but my mom did that for the doctor my grandfather had when he passed from cancer.

Unknown said...

these suggestions are wonderful. I just want to say I am so happy that you all got the answers you need. I pray that Landon will do wonderfully. Please keep in touch.

mereamark said...

I think a simple letter would be very appreciated. Doctors usually only hear the complaints, bad stuff, lawsuits, etc. A letter of appreciation is something he can keep forever and is probably a rare thing in this day and age. So glad things are progressing- and as much as I hate the circumstances, i am glad we get to see you in a month :)

Unknown said...

We're all here for you and James! Maybe a combination of the suggestions-a letter and photo of Landon now and then again after the surgery. Since he's your pediatrician he'll see Landon alot over the coming years, and I'm sure that would be really apprectiated. Did you talk to Dr. Duke about not getting back to you? It really upsets me that he gave you the brush off!

Diane S said...

Making a donation to a foundation that supports the hospital Landon will have his surgery at, or Duke some pediatric foundatin, might be appropriate. Good job Heather, you are doing a good job by being persistent.