So I have a confession to make...I have been on a googling rampage this week. Mostly I have been looking for anyone who has experience with an LLD and clubfoot. It doesn't seem like there are a lot of us out there and even less doctors that have the qualifications to treat it. Here in San Diego there are only 2 Ponsetti Certified orthopedists which are both located at Rady's Children's Hospital. Then the Rady's website has a description of their clubfoot treatment which is definitely NOT the Ponsetti treatments...so confused. My husband and I are currently trying to pull every string we got to try to have a consultation. Of course if the consultation goes well there is the whole issue of insurance. Currently I have Kaiser insurance and can only go to a Kaiser doctor. My little man is due Dec 1st and my work has open enrollment in Oct/Nov that goes into effect Jan 1st. So the question is....is it worth being treated by a Kaiser doctor for the first 30 days then be able to transfer to the certified orthopedist when my insurance can transfer over or do I wait to get treatment all together. I guess that is what the consultations are for right?
I might have a lot of time coming up for consultations soon. Lately I have been having dizzy/short of breath/heart racing spells in the morning at work that lead to me vomiting for the next hour or so. I thought it might be a return of my horrific morning sickness I had until I was 25 weeks. Had an appointment with my midwife yesterday and she said its a vaso-vascular issue? Supposedly when I am constantly bending at work (which I do a lot of!) I am cutting of blood supply and causing my nervous system to go haywire...great. The solution? I now have to go into work and explain to my Asst. Curator why I have a doctors note that says I am no longer allowed to bend at the waist. This is going to go over real well. My work has been amazing and very supportive this entire time but now I feel like my issues are getting a little ridiculous. I can just image what their reaction is going to be.
I have a clubfoot and developed a significant LLD before I was done growing, my underlying diagnosis is arthrogryposis. My LLD was fixed with lengthening. Over the years I have found that doctors who are REALLY good pediatric orthopedists are both Ponseti certified and have extensive experience with complex limb deformity. I would recommend finding a doctor who belongs to the Limb Lengthening and Reconstruction Society to deal with his LLD. The surgeon who re-corrected my clubfoot and did my lengthening is on this list as well as Ponseti certified. That aspect didn't help me as I was older when I found him. http://www.llrs.org/LLRSmembers.htm
ReplyDeleteEverything is going to be ok. Take a deep breath.
ReplyDeleteNo one wants to have something wrong with their little one. I was freaked out too. It will be ok mama! My now Two month old was born with congenital talipes equinovarus. Only her left foot. We did not know until she was born. We started casting Tuesday and she is doing great. I know that the cases are different but I have pictures and videos on my blog. If it helps you to connect with other people going through casting to see what you will be doing Alices blog is http://whathappenedtoherleg.blogspot.com/
It will be ok.