My 22 month old just got diagnosed with this elusive syndrome. First they thought it was autism . Yes, my little bundle is developmentally delayed he still is not walking even though he is trying like hell. I don't know why everybody wants to put a label on people I just think he likes having gullible mamma do all the heavy lifting.
Well doctors know best right? Or do they??? Because of this delay his pediatrician decided he should go to a pediatric neurologist they drew blood and he peed in a bag, they watched him play then started talking about some thing to why he is not in line with his peers.
So basically he is not autistic, I was on the edge of my seat we had spent the last 4 month with everyone making references to the autism spectrum and even if he was he would be on the lower end. I was not upset at autism I was upset at the box they where trying to stuff him in.
Ok so long story short or is it too late?? My
Baby who will always be just a quirky kid has something called Velocardiofacial syndrome VCFS for short , part of a specIfIc chaIn of hIs DNA Is broken And I have to become an expert in it. Per the neurologist orders of course. it's symptom specific which basically means what ever is a symptom of his syndrome we will try and fix it if that's surgery we do it if we work with physical occupational, therapist we do it, speech therapy we are on it..
So where do we go from here?? Well he is working with Birth to Three which by the way is a fabulous organization and he now has physical therapy along with speech therapy and we are going from there. It a long road ahead but... let our journey begin!
Check out some information...
Www.birth23.org
Www.vcfs.org
Well doctors know best right? Or do they??? Because of this delay his pediatrician decided he should go to a pediatric neurologist they drew blood and he peed in a bag, they watched him play then started talking about some thing to why he is not in line with his peers.
So basically he is not autistic, I was on the edge of my seat we had spent the last 4 month with everyone making references to the autism spectrum and even if he was he would be on the lower end. I was not upset at autism I was upset at the box they where trying to stuff him in.
Ok so long story short or is it too late?? My
Baby who will always be just a quirky kid has something called Velocardiofacial syndrome VCFS for short , part of a specIfIc chaIn of hIs DNA Is broken And I have to become an expert in it. Per the neurologist orders of course. it's symptom specific which basically means what ever is a symptom of his syndrome we will try and fix it if that's surgery we do it if we work with physical occupational, therapist we do it, speech therapy we are on it..
So where do we go from here?? Well he is working with Birth to Three which by the way is a fabulous organization and he now has physical therapy along with speech therapy and we are going from there. It a long road ahead but... let our journey begin!
Check out some information...
Www.birth23.org
Www.vcfs.org
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