Welcome and Introductions!

Elissa - posted on 06/17/2009 ( 17 moms have responded )

5

80

0

I wanted to create a place for everyone to introduce themselves and maybe find others who may have answers to their own questions. Use this topic to introduce yourself to everyone else and feel free to start your own topics. Our daughter, Jesmarie is now a three year old, active little girl who has overcome many obstacles and beat many odds. Born with lipomyelomeningocele, tethered cord, and syringomyelia she has had 2 surgeries (3 months old and 10 months old) to detether her spinal cord, debulk the lipoma, and drain the syrinx in order to prevent further neurological damage to her lower extemities. We did not know about her defect before she was born, we found out when she was born with a huge skin tag over a very large bump on her back/bottom. Although she looks completely functional on the outside (she walks, runs, jumps), Jesmarie started out with AFOs in order to learn how to walk and still has 2 ureters from her left kidney to bladder, disfunctional sphincter, and grade 2 reflux on the left side. She is on daily antibiotics to prevent urinary tract and kidney infections from the reflux. We follow the assumption that she is always re-tethered, but are waiting to operate again until her symptoms are bad enough to warrant the risks of surgery. That's pretty much all there is about us- how about you?

MOST HELPFUL POSTS

If you see this, leave this form field blank.
Powered by RESPECT not THUMPS

17 Comments

View replies by

Tracy - posted on 10/29/2012

2

0

0

I found this site while desperately searching for support and suggestions regarding my 8 year old daughter. Cadence was born at 26 weeks gestation along with her twin brother (Carter). She weighed in at 14.5 ounces and 10 inches long, Carter was a whopping 2pounds 2.5 ounces and 14 inches. I was told that they had a less than 5% chance of surviving and that we would take it hour by hour. At birth they found a sacral dimple, which was the least of our concerns at that point. Months later we addressed it. Diagnosis was tethered cord, so at 10 months had corrective surgery. After surgery we started having to catheterize her and also she also has chronic constipation. Currently we deal with those issues but also bowel and bladder incontinence if that makes any sense!!?! She is a beautiful, vibrant little girl who is struggling with self-image and acceptance by her peers due to having to wear pull-ups. I am struggling to find an incontinent product that is age appropriate and discrete. Does anyone have any suggestions? It is breaking my heart to her hear tell me about not having friends and worried about kids knowing about her "secret".

Tracy - posted on 10/29/2012

2

0

0

I found this site while desperately searching for support and suggestions regarding my 8 year old daughter. Cadence was born at 26 weeks gestation along with her twin brother (Carter). She weighed in at 14.5 ounces and 10 inches long, Carter was a whopping 2pounds 2.5 ounces and 14 inches. I was told that they had a less than 5% chance of surviving and that we would take it hour by hour. At birth they found a sacral dimple, which was the least of our concerns at that point. Months later we addressed it. Diagnosis was tethered cord, so at 10 months had corrective surgery. After surgery we started having to catheterize her and also she also has chronic constipation. Currently we deal with those issues but also bowel and bladder incontinence if that makes any sense!!?! She is a beautiful, vibrant little girl who is struggling with self-image and acceptance by her peers due to having to wear pull-ups. I am struggling to find an incontinent product that is age appropriate and discrete. Does anyone have any suggestions? It is breaking my heart to her hear tell me about not having friends and worried about kids knowing about her "secret".

Heather VanConant - posted on 06/18/2012

4

0

0

my son was diagnosed shortly after birth. it has been a shock as i was under such close medical supervision my whole pregnancy due to my auto immune issues. no one caught it so we were not prepared. it has been hard and i have done my best to stay strong but fall apart some dayswhen i look into his beautiful blue eyes and know all the hurdles he still has to face. we met with a pediatric nuerosurgeon at the U of M motts childrens hospital in ann arbor michigan when he was 1 week old. he will have an MRI in November followed shortly by surgery between 8 to 10 months they said of age. i worry for my little man as it is such a major surgery for such a little person. it scares me. but i really love his nuerosurgeon and his pediatrician here in our town is out standing he knew after an ultrasound at our hospital what it is as it is a rare thing. some drs would have just ruled it as a cyst. i pray for all of our children that are born with these types of defects. My son is soooo strong he was a kicker even interuterin. his ped said that he is doing amazing but his "bump" has gotten bigger as he has grown. theyh did check for possible hydrocyphalis and dont see that ever being an issue for him thank the lord. i wish you all the best and hope everything goes well for all of these babies of ours

Randi - posted on 12/15/2010

1

0

0

Hi my name is Randi, When I was 6 months pregnant with my little girl I found out she had spinal bifida. When Emma was born at 37 weeks due to me developing preclamsea I had no idea what to expect. Emma Grace had her first surgery when she was 1 day old to close the spine. Then at 7 days old she had her second surgery where they placed a vp shunt. After 12 days in ICU Emma was discharged.. And thats when everything started picking up. Emma is 17 months old now and has had a total of 15 surgeries... She just learned how to crawl but due to the injuries it has caused her we are no longer able to put her on the floor until we get her knee,shin and elbow pads. Emma also cannot eat by herself due to asperation she is now on a feeding tube. We cath her every 4 hours day and night. She was also born wit a duplicated left kidney which is retaining fluid. She is constantly back and forth from the hospital with UTI's.. We spend about 3 weeks out of every month at the hospital... Doctors dont understand why she keeps getting so many. A side from the medical problems Emma is the most precious baby I know... Thru all her pain and suffering she is the most happiest baby, There is never a time when she is not smiling, I just want for her not to have to have any more surgeries or go thru anymore pain. Im 21 with 2 kids. my first little girl is 3 and is very healthy and Emma was born with disabilitys. Im a single mom doing this all on my own. I have no support. Question today is... When does all the medical procedures slow down??

Danielle - posted on 11/22/2010

1

0

0

My son is three years old and has three surgeries, two detetherings and one on the tendons in his leg. I am also wondering if I am going to be able to potty train him. The doctors say he has feeling and he is not getting any urinary tract infections, but he shows no interest at all in going on the potty. I have also recently noticed him having sensory issues (Covering his ears alot and not wanting to hear loud talking) but I thought maybe I was being paranoid. Any advice from people would be nice, as this is the first site I have found dedicated to mothers of children with this disorder.
Danielle

Sue - posted on 11/02/2010

5

18

0

My son is 12 years old and has some sensory issues, he has had 4 detethering surgeries and 1 foot correction.

Terri - posted on 08/19/2010

6

44

0

Cindy, Here are some good sites:
www.nids.nih.gov/disorders/tethered_cord/tethered_cord.htm, www2.scholastic.com/browse/article.jsp?id=3522&print=1, http://www.arcjc.org/resources/publicati..., (this one is a publication to print under education at the bottom 'Understanding sensory integration issues", www.macmh.org/publications/ecgfactsheets/regulation.pdf, (again a document to print out), www.sensory-processing-disorder.com (they have a 12 page long check list to look over and help get a better idea if it may apply)....Hope all this info helps! Terri

Terri - posted on 08/19/2010

6

44

0

Cindy, Well there are many levels to it, but in our case it is heightened senses, loud noises, brigth lights, smells and textures of food. Her case is not severe but enough that we have to change our days somewhat. Her day starts out with her stimuli half full compared to other kids, so if anything is "off" she is overwhelmed way before another kid would be. I could go on and on...I will get you some sites to look at. It can get overwhelming doing the research...but I found a few simplified articles to give to the teacher this year. I will get some sites posted....Terri

Cindy - posted on 08/18/2010

2

0

0

What exactly are the symptoms of sensory disorder? I've always questioned if my son has some place on the spectrum.

Terri - posted on 08/18/2010

6

44

0

Hi, I have a daughter (Delaney) that just turned 6 and had her cord untethered at 3 mos old. We have had some issues with bladder/bowel, and Sensory. Otherwise she is a normal active girl, we have had repeat MRI's but they are not able to tell if there has been retethering. They want to do exploratory surgery if any other symptoms occur or what she has get worse. I was looking to find other parents to see if they have any issues with Sensory Disorder. We have an appointment at CHP's Development Unit to have an evaluation to see where she stands and if she is on the spectrum at all. (We think it is mostly just SPD though) Any info is appreciated! Thanks :) Terri

Cindy - posted on 05/20/2010

2

0

0

I'm on the yahoo LMC group but thought I would join this too, as this disease is so rare. My son Josh, born in March of 2007, had LMC and tethered cord. Operated on at 4 months old, his cord is still tethered, although his butt looks a bit more normal. Josh is mostly like a normal kid right now, although not quite as physically capable as some of his peers. He's slower than them when running and it looks like he has a harder time climbing on the playground. My biggest concern right now is his potty training ability. He usually can poop on the potty at home, but we haven't had luck with the peeing yet. The doctor said he has a slightly neurogenic bladder but he does not have to cath as there is no damage. The issue is continence and I just wondered how many kids out there who have LMC can actually go potty like a normal kid. I work full time and don't want to start cathing Josh, as I don't know what kind of daycare facility to put him in that would cath... I don't think any would. Feel free to contact me here or on facebook with questions. It's nice to know people who have children with the same rare issue. Very few people understand...

[deleted account]

my daughter Angelina was born with Myelomeningocele,dislocated hipm club foot and vertebrae fusion and deformation, plus a rare cancer .we didn't discover that till she was born too despite I did a medical test that confirmed she didn't have myelomenigocele.
she's 3 yeas old too, she can walk now using a walker, she has a very strong will but she has neurogenic bladder and urine reflux but the antibiotic is not preventing the urine infections her urologist is proposing now to do bladder augmentation surgery after 6months from finishing her chemotherapy.
her lat RMI showed tethered cord but her neurosurgeon told us that this is the form of her spinal cord and to not worry about this problem till she complains from pain in her legs

Elissa - posted on 07/19/2009

5

80

0

No problem! It does worry me though that they have not operated on him yet (at least once). If the cord is tethered it is a matter of when there will be irreversible damage (not if there will be). She might want to get a second opinion from another pediatric neurosurgeon who specializes in tethered cord. Once the damage is done it usually is not reversible :( have her call me or email me!

Elizabeth - posted on 07/19/2009

12

4

1

That's fantastic thank you for offering your help.
It's her little boy, my nephew, who's got it.
At the moment he's 10 months old and apart from the visible lipoma on his lower back he's a perfectly healthy, and very intelligent little boy. Although it took a little longer than the set progress charts, he's sitting up on his own now and has a lot of strength in his legs.
His spinal cord is apparently more tethered than most cases that doctors have seen, so surgery has been postponed to see how he develops as he gets older, I'm guessing this is the same as your little girl, waiting to see whether the surgery is necessary.
Obviously I'm sure Sophie will talk to you about this in greater detail, but thanks again for your help :)

Elissa - posted on 07/17/2009

5

80

0

She can also call me- I know it is hard to get the time to sit down and email sometimes! I got the phone number of someone who had a child with lipomyelomeningocele right after we got Jesmarie's diagnosis and that conversation was PRICELESS to me!!! Please tell her not to hesitate to call me :) 912-882-7160

Elizabeth - posted on 07/17/2009

12

4

1

Random I know, but, My sister in law is desperately trying to find people who have knowledge and experience of lypomyelomeningocele, and having no luck as it is so rare. Do you have a facebook and would you be willing to provide some advice about your experiences?

I am so happy to hear about your daughter, as a lot of the information we have found doesn't seem to be positive, so it's nice to hear of a success story.

If you see this, leave this form field blank.
Powered by RESPECT not THUMPS

Join Circle of Moms

Sign up for Circle of Moms and be a part of this community! Membership is just one click away.

Join Circle of Moms