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Search: Posts Made By: mortman
Forum: Help and Resources for Hemangiomas 04-25-2012, 04:33 PM
Replies: 28
Views: 29
Posted By mortman
We visit Dr Menezes in Iowa City. He has been...

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...
Forum: Help and Resources for Hemangiomas 04-24-2012, 05:43 PM
Replies: 28
Views: 29
Posted By mortman
abatie, We live 60 minutes west of Sioux Falls. ...

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...
Forum: Help and Resources for Hemangiomas 04-24-2012, 01:53 PM
Replies: 28
Views: 29
Posted By mortman
Lincoln is doing great. His H have stopped...

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,...
Forum: Help and Resources for Hemangiomas 04-20-2012, 08:48 PM
Replies: 28
Views: 29
Posted By mortman
This is a link to some info on my son's...

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-Association_between_Cutaneous_Infantile_Hemangiomas.pdf
Forum: Help and Resources for Hemangiomas 04-20-2012, 08:16 PM
Replies: 21
Views: 22
Posted By mortman
Our family doctor brushed off his bifid scrotum...

Our family doctor brushed off his bifid scrotum and H. I took the steps to seek out a dermatologist. When we took Lincoln to her (he was 5m) she and the other 3 derms in the office had never seen a...
Forum: Help and Resources for Hemangiomas 04-13-2012, 10:02 PM
Replies: 21
Views: 22
Posted By mortman
My son has LUMBAR syndrome. He has a H near his...

My son has LUMBAR syndrome. He has a H near his rectum and also many small ones on his genital area. He is now 2 but still has issues with the rectal one ulcerating at times. We used topical...
Forum: Help and Resources for Hemangiomas 07-11-2011, 08:32 PM
Replies: 24
Views: 25
Posted By mortman
We use the topical version on our son's...

We use the topical version on our son's "diaper area" hemangiomas (he has several pea to quarter size ones on his bottom, by the rectal opening, and on his genitals). They have stopped ulcerating...
Forum: Help and Resources for Hemangiomas 07-08-2011, 02:04 PM
Replies: 3
Views: 4
Posted By mortman
Our son has many raised ones in his diaper area...

Our son has many raised ones in his diaper area and 1 (size of a quarter) that is in between the cheeks of his backside near his rectum. Pooping used to cause it to ulcerate and bleed daily. We...
Forum: Help and Resources for Hemangiomas 07-06-2011, 02:06 PM
Replies: 28
Views: 29
Posted By mortman
Update: We just had our post surgery MRI. Lots...

Update:

We just had our post surgery MRI. Lots of good news. Lincoln started walking at about 14months. He is doing well with both motor skills and mental skills. He is a little guy weighing in...
Forum: Help and Resources for Hemangiomas 07-05-2011, 02:11 PM
Replies: 6
Views: 7
Posted By mortman
My 4th child was also born with Pelvis/Lumbar...

My 4th child was also born with Pelvis/Lumbar syndrome. He had a tethered cord and a fluid filled cavity in his spine. He is also had a hole in the covering of his spinal cord. Doctors also...
Forum: Help and Resources for Hemangiomas 02-09-2011, 01:41 PM
Replies: 28
Views: 29
Posted By mortman
Lincoln finally had his spinal surgery this past...

Lincoln finally had his spinal surgery this past month. They confirmed that along with the diagnosis of LUMBAR Syndrome he also has a mild form of Spina Bifida. While doing the surgery they found a...
Forum: Help and Resources for Hemangiomas 12-27-2010, 06:11 PM
Replies: 28
Views: 29
Posted By mortman
Lincoln's surgery is 1-11-11. Definitely a date...

Lincoln's surgery is 1-11-11. Definitely a date we can't forget :)

He will have the as much fatty tissue as possible removed, his cord untethered, and possibly a shunt put in to drain the fluid off...
Forum: Help and Resources for Hemangiomas 12-20-2010, 09:36 PM
Replies: 28
Views: 29
Posted By mortman
We have an update:) We are using Timolol .5% gel...

We have an update:)

We are using Timolol .5% gel for the raised hemangiomas in his diaper area. After just a week of once a day topical treatment, we have noticed a change in color! They seem to...
Forum: Help and Resources for Hemangiomas 10-19-2010, 01:39 PM
Replies: 28
Views: 29
Posted By mortman
Thanks for the tip :) Our dr is hopeful that...

Thanks for the tip :)

Our dr is hopeful that the bladder issue will be resolved with time or with the untethering of his spinal cord and the removal of the fatty tissue that is attached to the...
Forum: Help and Resources for Hemangiomas 10-18-2010, 02:50 PM
Replies: 28
Views: 29
Posted By mortman
Update: Bladder tests show no flow to the extra...

Update:

Bladder tests show no flow to the extra tube coming off the bladder. The bladder does show signs of not relaxing completely to empty...they will keep an eye on this.

The hemangiomas on his...
Forum: Help and Resources for Hemangiomas 09-30-2010, 06:34 PM
Replies: 28
Views: 29
Posted By mortman
Missy, They are treating each symptom on its...

Missy,
They are treating each symptom on its own. We will visit the Urologist next week to have a consult for his bladder and scrotum. Once this surgery is complete we will move on to the tethered...
Forum: Help and Resources for Hemangiomas 09-24-2010, 08:55 PM
Replies: 28
Views: 29
Posted By mortman
It appears this LUMBAR syndrome could also be...

It appears this LUMBAR syndrome could also be similar to PELVIS syndrome. There is a few more articles on this.

http://archderm.ama-assn.org/cgi/content/full/142/7/884
Forum: Help and Resources for Hemangiomas 09-23-2010, 09:25 PM
Replies: 28
Views: 29
Posted By mortman
Thanks for the help

Thanks for the help
Forum: Help and Resources for Hemangiomas 09-20-2010, 09:49 PM
Replies: 28
Views: 29
Posted By mortman
Thanks :) It includes all the symptoms listed....

Thanks :)

It includes all the symptoms listed. Also I forgot to mention his tail bone is thinner than normal.

The acronym "LUMBAR" is used to describe the association of Lower body hemangioma and...
Forum: Help and Resources for Hemangiomas 09-20-2010, 07:37 PM
Replies: 28
Views: 29
Posted By mortman
LUMBAR Syndrome

I previously wrote of my little boy having a segmental Hemangioma on his left leg. Our little boy is now 6m old. After 2 MRI's and an ultrasound we found out a bunch!!

He has a syndrome called...
Forum: Help and Resources for Hemangiomas 08-16-2010, 03:41 PM
Replies: 3
Views: 4
Posted By mortman
my 4.5m old boy has a segmental hemangioma on his...

my 4.5m old boy has a segmental hemangioma on his left leg (from hip to toes) and also the diaper area. We were told it was nothing to worry about. We noticed that it seemed to be spreading. When...
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