Topic : 07/23 Ask the Doctors

Go see your doctor...probably start with your primary care doctor.  He/she can refer you to a dermotologist, or other type of specialist, if necessary.  Don't be embarrassed to talk to your doctor...they are there to help you.

The thing that most here don't realize is that Caudal Regression is a very rare birth anomaly.  It affects approximately 1 in 25,000 births, and most doctors have never even heard of it.  As a mother who has a child with CRS, I fail to see how an ER doc, a pediatrician, a family therapist and a plastic surgeon qualify as "experts" in this kind of issue.  We see a pediatrician, but we wouldn't let them make decisions for our son that require specialists.  You would require a pediatric orthopedic doctor who sees children with Caudal Regression in their practice to actually qualify as an "expert" with regards to this decision.

I belong to a support group for people dealing with Caudal Regression and I know people who deal with this on a daily basis, and I know the mom on the show.  When I first heard of the disarticulation surgery, I felt that maybe waiting might be a good option too.  However, after seeing this video and hearing stories of people who have actually been through the procedure, I'm not so sure.  If you watched Jaya move around, you would have noticed that his knees do not bend, nor are they capable of bending.  His hips are not properly formed either.  With these two problems, no medical miracles are going to come to help him "walk" normally.  Braces won't fix what nature didn't create properly in the first place.   Prosthetics won't do anything other than slow him down as his hips don't function well enough to have a proper gait.  There are no surgeries available or in the works that can fix joints that weren't formed in the first place.

You really need to be in this situation to see that sometimes, "function" is more important than "form"...  As Jaya grows and his legs get longer, they will stick out straight in front of him in a wheelchair preventing him from getting close to things, and he would not be able to sit on a seat in a bus or car.   It won't be long before his legs are too long to easily handwalk.  To say that someone should keep their legs just to look more normal if that sacrifices the best chances of mobility isn't the right answer, it's a knee jerk reaction to the fear of losing your own legs or to looking different in general.   I know several people who have had the disarticulation surgery and they are very happy, and do NOT regret it.  Just check out this video, and see how happy this woman looks... http://www.youtube.com/watch?v=rLYEUceZtNA  while she ballroom dances with her partner to the cha cha in her wheelchair.

Disarticulation isn't the answer for everyone (especially if the legs can bend and sit normally and have normal joints), but it is a reasonable option for those whose legs will never function and only serve to make their life uncomfortable and their mobility hampered.  Until you have been in the shoes of the mom who has to make this kind of decision, don't judge their choices.  You can't even begin to imagine the thoughts that go into a decision like this...

I am just wondering where the xxxx people get the notion breast feeding and intelligence would possibly have anything to do with intelligence.  This is so ridiculous!

I am in the wellness field and I am deeply concerned that Drs. have lost their way. It seems like no matter what the ailment or complaint is, it is solved with a prescription. Are the drs really in bed with the BIG PHARMA companies? Why are drs. not willing to determine the root of the problem rather than just slapping a band aid on it??

I teach wellness, good diet, and exercise and work for a wonderful chiropractor who explains nerve interference in relationship to symptoms in the body. We see miracles in our office every single day and we try to educate our patients to be IN CONTROL, not allow ANYONE to play god with their decisions. An educated patient is a healthy patient most of the time!

We hear this more often than you know, that a dr. has told them there is NO OTHER alternative but medication or surgery. And sadly they believe that until they come to our office as a last resort.

I would urge you to find a good wellness chiropractor and also start taking colloidal silver internally, plus use it topically.  All ailments generally start from the inside out.....having interference in your nervous system is a major factor (which a chiropractor can correct)....and the colloital silver will be a plus in your healing. Also consider your diet, eat lots of fruits and veggies, and add some Omega 3 to your regimen, and hydrate with water.  Change your soaps and shampoos to those that are free of sodium laurel sulfate (try JASON's products), build up your immune system by pumping your VIT C intake. Juicing is also beneficial. God bless....