Re: New! Suggestions Please!

[Guest guest]

Naomi I am also interested in any repiles to your post.

My grandaughter is also on state insurance and at her

4 mo check up in 10 days we are asking the ped. about

her flat head. I had checked the insurance posts but

never found any on state insurance. We may have another

option by putting her on another insurance plan but we

were trying to aoid that right now.

New! Suggestions Please!

My daughter's plagiocephaly is not due to positioning but a rare metabolic bone disease. She also has mild cerebral palsy. She has always moved constantly in her crib from bone pain and has never been able to sustain a position for very long. Kaitlyn's head shape did not start changing until she was 9 months old. At that time it was very subtle. It wasn't until just before her first birthday that it really became noticeable. And, at 15 months old it is still progressing at a rapid rate. Just last month she had no flattening in the back of her head which is now very apparent. She has facial asymmetry which the Dr. believes is due to the CP. She has right frontal Plagiocephaly and her right cheek and right eye are smaller than the left. Her right ear is also down lower and behind the left. I recently found a Dr willing to try a helmet, but we will have to travel out of state. Our Neurosurgeon told us to wait until it was "grotesque" (when she was about 3 or 4) and then do surgery to correct her skull. I feel that I owe it to her to try the least invasive procedure available… It looks like our insurance will not cover the cost, as we are on state Medicaid. Has anyone had any success in getting state Medicaid to cover the cost? Her PCP and her Neurosurgeon claim that there is no evidence to support the use of helmets so they will not write a prescription or letter of medical necessity. I can't just sit back and watch her head become more misshapen by the day! Am I crazy for pursuing a helmet since all of her Dr's are adamantly against them? They had also felt that hers was too mild to pursue it. Will I be disappointed with the results since she is 15 months old and there is facial asymmetry? I have posted pictures of Kaitlyn under Our Plagio Babies K - Kaitlyn B mirror picture 1 & 2. I did take these pictures in front of the mirror and you can really see the asymmetry. If anyone has any suggestions or information I would appreciate it very much.Thank You,Naomi

[Guest guest]

Naomi - I don't really have too many suggestions as I don't really know anything about plagio from a bone disease.

What state are you in?

Is there a Children's Hospital near you that might have a different specialist that your daughter could see for a 2nd opinion?

Have you contacted a craniofacial DR? Maybe these websites could help you - I've emailed them and they were helpful to me.

cappskids.org

Faces http://www.faces-cranio.org/

The World Craniofacial Foundation: Dedicated to helping children and familes who experience deformities of the head and/or face by providing support and access to life-changing procedures. http://www.worldcf.org/

Let us know how she is doing!!!!

Jen

Mommy to 4...and 1 more!!!!

"Luli"

www.babiesonline.com/babies/j/jens5th/