Spina Bifida Occulta

maybe aqua therapy will help.........my mom has cronic back pain and it does her wonders

Hi C.,
I work at the University of Michigan in the Multispecialty Pediatrics Clinic. I actually used to be the medical assistant for a Dr. that ran a clinic on Myelodysplasia/spina bifada. His name is Dr. Barr. You may want to look him up.
Now, when I was younger I had a friend with Spina Bifida, his case sounds much worse than you son's as he was wheelchair bound and wore diapers. But he was a very strong willed kid with a fantastic personality. Be there for your son, try to find a local support group, and know that now that you are getting some answers to his problems, you can actually begin to move forward in his treatments. He may have to walk with a cane as he gets older, and any one of the physicians should be able to prescribe him something for his headaches.
I hope I have helped some, I know it wasn't a lot.
A. T.

Wow, C.,
I can only say I hope you can find a doctor or a group that you feel will answer your questions directly and not keep passing you off to yet another sub specialty. Trust is the most important thing. You don't mention how your son is taking to all this. What do the docs say about the headaches? Do some research on your own via the internet and this forum and share everything you learn with your doctors. Bless you for your bravery and for reaching out.
J.

His headaches could be do to a build up of spinal fluid in his brain. Your spinal fluid usually flow in your brain and down around the area of your spinal cord. If he has bad headaches there could be a blockage of that flow and it increases the pressure in his brain and causes headaches. Does he vomit also? He probably needs an ultrasound of his spine at the defect
and an MRI (head for sure maybe spine). He may need the pressure release from his head. He may need a shunt. Ask your doc about that. He prob will not feel better until this is done.
E.

I would recommend that you have a consulation with a chiropractor! YOUR childs headaches could be caused by something else all together.
I am 38 years old and discovered that I have spina bifida occulta (i discovered it at 30yrs old.. AFTER having a child.. during a cat scan to see why my back and legs hurt so much.) My pain was a result of spondylothesis(sp) in my L4 vertebrae, i also have a touch of arthritis in the L5. Needless to say.. I was FREEKED to find out at 30..post preg..that i had it. Occulta is a very small form of spina bifida (mine fortunately, so far, isnt giving me any symptoms at this time). The back doctor prescribed p.therapy (to strengthen my lower back area), advised me to get to a healthy weight and stay fit (i was approx 25 lbs overwt.), and be smart w/lifting heavy objects that put strain on the lower back.
I did get better only to have more symptoms a few years later (post pregancy #2) On a whim... I went to a chiropractor for a consult. She discovered a curvature in my lower spine, a neck curve that was reversing, and that my head was actually sitting 10% more forward than it should, in addition to a number of vertebraes that were out of alignment, (all resulting in aches, pain, and stiffness, and headaches)..!
Please do not completely trust so called 'back doctors' w/o a through consulation (incl xrays) from a chiropractor. My 'back doctor' gave my spine a clean bill health 'no abnormal curvatures' (i have the letter!).. I was shocked when the chiropractor found (and showed me!)all those things that the "back doctor" didnt! My family and I have been a chiro. patients for 4.5yrs now (as well as my 7yr old, 9.5yr old and 43 yr old husband!). All my curvatures are within normal ranges, headaches and pain are gone! I live in Commerce Twp Mi.. and go to a local doctor (of chiropractic) that specializes in pediatrics. Please let me know if you need a referral. Chiropractic has opened my eyes to many things and improved the lives of many people I know and have referred to her for treatment. What could it {a consultation} hurt, right? In wellness and love, A.

Check out Egoscue. He has been doing amazing things to help people with pain. www.egoscue.com. He has a book called "Pain Free" and also a clinic in CA. He has helped famous people in sports and I can't say enough how amazing he is in this field of pain and bones. You can listen to his radio program on his website. And call him to see what they can do with this disease. He has saved a lot of people from mutilation and doctors mistakes and much pain. So maybe he can help your son. God bless you and heal your son, A.

I personally have Spina Bifida Occulta, I am 34 years old and I am having my fourth child. I turned out just fine. They discovered my condition after an X-ray just over 4 years ago. Depending on the degree of the defect will depend on what the symptoms are. If we had known it at the point you are discovering it, it would have explained a lot for me. I would have to ask my mother how we survived my younger years, but we didn't know that anything was wrong. I treat my continued headaches without meds. I go directly to sleep and remove my self from life, come home and lie down, I leave work, shopping, church wherever I am. For him it's school or play. I see a neurologists for my headaches and I have been on a low grade antidepressant for the treatment of my headaches, not for my disposition. It took a neurologist to figure that out.
I wish you the best and I hope that all gets better and he can live as I am living now, virtually the average life, and not a whole lot of pain.

The first and only thing that comes to my mind is craniosacral therapy. If you go to www.upledger.com you can find more info on it and find a therapist in your area. hope that helps.

I have spina bifida occulta and I am 42 y/o and I was told by a doctor many years ago that I have to be careful not to be struck in the lower back as it could cause injury. I have had 3 children all regular births.
Did the doctor explain to you what spina bifida occulta is??
For anyone else who doesn't know, your spinal vertabrae usually have covers (caps) over them but with spina bifida occulta it doesn't have a cover in most cases. I didn't walk until I was 18 months old.
My spina bifida occulta effects 4 vertabraes.
Best Wishes,
D.

I'm sorry I don't have any advice, but I wanted to let you know that my father was diagnosed with Spina Bifida Occulta when he was 45 years old because of an x-ray done for arthritis in his hips. He is now 59 and doing very well and he has been a railroad engineer for over 30 years and still is driving trains. I have heard stories of all of the backaches he had growing up, but I don't know what they did for him and he has had bad headaches for as long as I can remember and I'm sure much longer.

I hope that you can find the help that your son needs and I wish you and him the best of luck.

J.

Hello~
I really am not trying to promote myself as I would much rather try to have some friends to chat with or meet up with, but being a therapist... this is all I really know (and being a mom to my son!). (That's what happens when you are a home-body and shy.)

Massage is really helpful in managing muscle spasms and the connective tissue changes that may be occurring. The Reflexology alone will help with that and the immense headaches (I can vouch for the headaches as I suffer myself, and not so much now due to this therapy.) I am more than happy to teach you what to do to even help maintain between sessions to keep him out of pain!

Reiki or Cranial Sacral work may also be an option...

There are many alternative medicines out there to help and not many medical doctors will support it. But any type of compressive force or joint movement is contraindicated for this. (so I do not recommend a chiropractor.)

Best of luck... I hope this helps! ;)