LUMBAR Syndrome

[spaatz1329]

My daughter has PELVIS syndrome, which sounds very similar. She has a hemangioma on her sacrum and genitalia, a tethered cord, and an exstrophic bladder. She is 2mo old. We are having spinal cord surgey in October and will be dealing with the bladder as soon as the urologist can get around the hemangioma. It is very rare and there is not much info on it. Pretty scary.

[mortman]

This is a link to some info on my son's condition. It is very similar to PELVIS syndrome.

http://www.hemangioma.cl/pdfs/LUMBAR...angioma s.pdf

[smurph]

Somehow even though I am on here all the time, I missed this thread and all the updates! What an ordeal! I hope everything has been going well recently. Thank you for sharing your experience. I'm sure other families will be helped. How is he doing these days?

Shannon

[mortman]

Lincoln is doing great. His H have stopped growing and have faded in some areas. He is still having GI problems are we are headed to a specialist in a couple of weeks to see if it is an anatomical, spinal cord, or behavioral issue.

We will also visit our dermatologist again as well. She is excited to see Lincoln and his progress. She has been amazing!! She contacts us after our big visits to Iowa City to see how he did. We couldn't have asked for a better, more caring doctor!

I have been building a blog. One of the pages is on Lincoln's condition, how he was diagnosed, and pictures of his progress. It is a work in progress but if you interested in seeing pictures you are welcome to visit.

http://alittlepinklemonade.blog.com/lumbar-syndrome/

We also have a caringbridge setup for him.

www.caringbridge.org/visit/lincolnortman

[abatie]

mortman,
You must live in the Iowa-Sioux Falls, SD area? I live in South Dakota and have a daughter with CMTC. I am interested in knowing more about the doctor you saw in Sioux Falls. What is the specialty area? We have been primarily dealing with Mayo Clinic but are now starting to do some in Sioux Falls.
abatie

[mortman]

abatie,

We live 60 minutes west of Sioux Falls. We seeing Dr Wanna with Avera Dermatology for his hemangiomas. (Jana Johnson is also awesome) For most of our long term care we visit Iowa City...things like urology, neurosurgery, genetics, and probably GI. We will get an initial check at Sanford in SF for GI but both Dr Wanna and Dr Menezes (neurosurgeon) prefer we do as much within one hospital - which for us is IA City.

Dr Wanna has been amazing. She is very caring and will go the extra mile to make you feel comfortable. We were told by our neurosurgeon that "she is a keeeper" and he liked working with her too.

How old is your daughter? Some day we hope to be able to do follow up care closer to home. Gas can really add up!

We have found we prefer Sanford childrens over Avera but I think that is because we had the neurosurgeon @ Avera tell us he wouldn't untether Lincoln's cord until he was 18m old. Dr Wanna suggested we seek another opinion somewhere else with a pediatric neurosurgeon.

Keep in touch!
Missy

[abatie]

Thanks for the information!

Becca is two (will be three in July). We actually have Avera insurance but have seen one Sanford doctor for orthopedics. We have not been to any Avera providers in Sioux Falls but use them in the Aberdeen area for our regular stuff that is close to home.

I am interested in tethered cord. I had actually had someone post in the CMTC thread that this was something I should look into with Becca because of a deep open dimple above her butt. I had talked to our family doctor about it and she blew us off. I haven't done anything more with it but I am still worried each time I see it. It is just one more thing on Becca's long lists of worries.

I will definately keep in touch!
Alison

[mortman]

We visit Dr Menezes in Iowa City. He has been doing neurosurgery for 30+ years and teaches all over the world.

Our 5th child has a deep dimple and we had that checked but all is well. I kind of pushed to just have it checked for peace of mind. I don't think they thought it was a big deal. I think I read closer to the rectum the smaller the chance for tethered cord. I think that was why they were really into having Preston's checked.

Has she begun potty training or had issues with bowels? Was she late walking or crawling? Those aren't always good indicators but if she has unexplained problems with them, I would ask for a second opinion.

Missy

[abatie]

She is potty training now and actually has done well. She was late to roll (but that may have been related to CMTC because it was on the affected side) and she was late to crawl (also could be related to CMTC and the limb length difference). She walked right before her first birthday. She does struggle with back pain though and they can't tell us for sure if it is related to her limb length or not.

The dimple bothers me because it has gotten larger and deeper. My third child also had one but it closed on its own and didn't progress farther. I will continue to monitor it.