Anyone out there with a spina bifida kid?

[nicky85]

Hi! I was wondering if anyone else out there has a child with spina bifida. My sweet little boy was born in February with spina bifida myelomeningocele, hydrocephalus, and Chiari II malformation. He is doing very well now and has use of both of his feet and legs (left foot moved hardly at all at birth) since seeing a chiropractor, though we are still have some work to do for him to have full usage. We're kind of an island of crunchiness on the spina bifida scene where I live, so I was wondering if anyone else out there is dealing with similar issues.

[2boyzmama]

I know there is one other mama on here who is a "regular" whose daughter had a lipomenengocele (I probably really misspelled that...and might even have the term wrong, but it's something like that). She has a neurogenic bladder and bowel, and limited use of her left leg, but is otherwise doing really well. She's had two detetherings I think.

So...I just thought I'd respond to let you know that hopefully she'll be by to comment soon!

[peaceful_mama]

Not me, but I was just here looking for an update on a thread I've been following and noticed this post.

Just had to comment that I did respite care during my sr. year in high school for a family whose baby had spina bifida. I have absolutely no idea what type or anything like that, I had no idea there were differences I guess.

They were told all these things he would "never" do...one was crawl. The last time I saw him, he was 7 months old and able to scoot himself around in a sort of "army crawl" like many babies do. He would smile at himself in this little toy mirror and then look behind it like he was looking for the other baby--so adorable!

I laughed and said somebody forgot to give him the memo on what he 'never will' do...and I often wonder how many other "nevers" he's overcome. (he'd be a teenager now)

I've worked with a lot of kids over the years...always done some form of preschool or childcare as paid employment....and I've always remembered this baby as somebody special, in fact I nearly named my 1st the same name because of the meaning and because it reminded me of this sweet, happy, strong person.

just a story I guess. don't know, guess I thought you might like to hear about it...

[KatWrangler]

Hi! My daughter has Lipomyelomeningocele, Tethered Spinal Cord, Neurogenic Bladder and Bowel.

I am getting ready to get them up for school. I will be back to post more!

[nicky85]

That's a sweet story peaceful_mama! He sounds like such a cute little boy. I knew my little guy would be a mover and a shaker from the time he was in the womb. He kicked so much I thought I had a whole soccer team in there! The doctors will always tell you about the things your baby "will never" do. We always believed our son would do more than the docs ever said. He is so much fun to watch right now. He's five months old and is so anxious to do everything. His latest obsession is "walking" and "standing", which means that we hold him up and let him put weight on his feet and try to move them like walking. He likes to push off with his feet. He's in such a hurry to go places and do things! We're really excited that he has started to put weight on both feet equally since his last adjustment. Before, he was favoring his right foot. He's a very happy little boy and when we go out people always comment on what a beautiful baby we have. No one has ever said a thing about his shunt. Spina bifida babies are a blessing I think. =)

[DandelionHarvester]

Hello! I have a 4 month old little fella with Mylomenengicile L4/L5, his name is Cedar, he is sooo sweet, smiling a lot these days and starting to laugh.  My friend suggested I try out the Mothering forums to find other natural mamas with Spina Bifida children and looks like she had the right idea.   We want to avoid any invasive procedures or pharmaceuticals as much as possible. We are trying out alternative therapies like a chiropractor, Reiki, herbs, homeopathy, etc. 

Right now we do cath him 4 times a day, which hasn't been easy for me to get used to.  He has one foot that points downward and doesn't move much except with downward force. The other foot moves like normal.  I like our new chiropractor though, who said we would try to get that foot moving in the next few weeks! He is the kind of guy who says to expect miracles and nothing less. That is the kind of person I need around me right now!  

Anyone in Maine?
 

[KatWrangler]

Your physical therapist can show you gentle stretching of the foot.  Even with PT and and AFO we ended up with surgery on Gabrielle's left foot when she was a year old.  It got so atrophed it look like she was walking on the top side of her foot.

Does your child have a tethered spinal cord?

[DandelionHarvester]

As we've been told, they all show tethered spinal cord on an MRI, but not every case shows symptoms.  We don't get an MRI until 6 months, and he's only 4 months right now. I've been gently massaging his scar with vitamin E/Calendula oil to minimize scar tissue, also taking some homeopathic scar stuff that our chiropractor gave us.

[KatWrangler]

They can see it on an MRI.  But with a SB baby it is harder.  I am glad you are going for the MRI at 6 months.  It isn't bad.  Gabrielle had her first MRI when she was 4 1/2 months old.

Be very observant of your child's legs and feet.  That is the straw that broke the camels back for us.  She was 2 months old when she started showing symptoms.  If you notice anything (weakness, coldness, changes in position of the foot or leg) contact your Neurosurgeon/Doctor immediately. 

If you search my posts you can find our story.  It is on here somewhere.  LOL

[yolonda scott]

hello my name is yolonda my 7 month old son cameron has the same exact type of spina bifida he can't feel his feet or control his bowel movements he has myleomengicil chiarri malformation II hydro hip displaysia a shunt in the right side of his head he's a very happy baby you'd never know he has spina bifida he is very healthy and smart as well if you'd like to talk email me [e-mail] ill give you my cell I mostly text
I have two other boys as well ages 6 and 9 and are very healthy they love there brother to death.