Need Advice on Spinda Bifida

Hi J., my best advice would be to get a second and third opinion. Spina Bifida can be mild and severe. Did your Pediatrician mentioned any tests be done? You mentioned a very good point about Doctors not mentioning it earlier. Move quickly find another Physician and inquire future treatments. The earlier you seek help the better your baby will be. Good luck and I really hope that your daughter does Not have spina bifida.

Best of luck,
E. M

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Hi J.,

Go online, get as much info as you can, and ask your child's doctor specific questions. Get a second opinion--ask for a referral to a physician who specializes in children with spinal issues--a pediatric neurologist. If your child does indeed have spina bifida, it will be important for you to get proactive with your local school district. Contact their Special Education Dept.--specifically, the Infant-Parent program, as sometimes children with Spina Bifida have specific physical and learning issues. These therapy, etc. services are FREE through the school district, a federally mandated program. Get involved with other parents of children with spina bifida in your community. The earlier the intervention (occupational and physical therapy, etc.) these children receive, the higher their chances of performing better physically, emotionally, and academically. In addition, it's always a good idea to see if your personal health insurance policy will cover outside therapy services. Bless you and good luck! J. (former OT in schools, hospitals, etc.)

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Hi J.
My son was born with spina bifida. You can find out with a MRI. Depending on your insurance, you can get a referal to a neuro-surgeon. Dr. Robert Dauser is awsome at Texas Children's Hospital in Houston. There are many forms of spina bifida, and the earlier the intervention the better. There are a lot of programs like ECI, that provides OT, PT, speech. The first thing you need to know is why your pedi thinks she has it, then have her get a brain, and spine MRI. Let me know if you have any other questions.

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J.,
I think the reason you are confused is because most spina bifida is visible at birth at the lower end of the spine. The spine is open and the meninges may be exposed. But there is a spina befida occulta that is a deffect that is not visible externally. It may not be apparent unless there are associated cutaneous manifestations or neuromuscular disturbances. It may be associated with one or more cutaneous manifestations: skin depression or dimple, port-wine angiomatous nevi, dark tufts of hair, soft subcutaneous lipomas. May be neuromuscular disturbances: progressive disturbance of gait with foot weakness, bowel and bladder sphincter disurbances. Did you have an AFP done prenatally? If so, it should have found the deffect. I don't know what the management is for this. I wish I knew more....sorry

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I would call and make an appointment at Christus Santa Rosa Children's hospital, either the Center for Hope or i think they have a spina bifida clinic. Someone at the center for Hope , which is in the outpatient building, can tell you who can evaluate her.

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Hi J.-

I'm not an expert, but I do know that there are different kinds of SB and that they vary in severity. In it's mildest form, there is no treatment needed and the child may not have any physical symptoms at all. Since this is just being detected, I'm assuming that if your child has it, it is the mildest form. I would suggest that you google Spina Bifida to start our research. I'm assuming your doctor has referred you to a specialist to get a firm diagnosis?

Good Luck,
K.

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Your Dr., should have picked up on this at birth. I suggest you get another opinion and as soon as possible. Does your baby have any weakness in her legs? Does she moves her legs actively or is she "lazy", I would have her examined as soon as possible.

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I know this must be a difficult time for you, and I'm sorry for that. I know next to nothing about it, except that the host/creator of my favorite children's show has a daughter with cerebral palsy & spina bifida. Her show is "Signing Time" & it's on PBS here. You can read her inspiring story here:
http://www.signingtime.com/article_info.php?articles_id=2
I believe it may give you some hope and comfort at this time, & the show is an excellent resource.
Best Wishes,
K.
Mama to Milo

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The best thing you could do is call ECI(Early Childhood Intervention). I am in El Paso and the number is in the book but you can also locate them through the local education services center, which is Region 19 here.
They will set an appointment up with you to come to your house. They will evaluate your daughter to see if she is developing appropriately or if she could use therapy such as PT (Large Motor - sitting up, crawling, etc), OT (Fine Motor - picking things up, feeding self eventually, etc), SLP (Speech, Language development, Swallowing) and they can enswer your questions or help you find answers.

Spina Bifida has varying degrees of severity ranging from very mild physical difficulties to significant needs. Please call ECI as soon as possible, to set your mind at ease and to get her help that she needs.

God Bless,
K.

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