Friday, July 23, 2010

About Addy -- Initial Diagnosis

Addy was born on April 20th -- a beautiful baby with a beautiful birth. I noticed very quickly after her birth that her head had a bit of a strange shape to it, but wrote it off as being a little misshapen from the birth. I expected it would right itself within a few days or weeks.

At her 2-week check-up, the nurses thought it strange when I pointed out that her head shape had not changed much. The left side was a bit higher and bigger than the other, and the front skull plate on the right side seemed to overlap the one behind it. I was told it should correct itself in time.

When Addy was 7 weeks old, I took her to a new doctor consultation. We had not picked a pediatrician before she was born, so we were going to Dr. Y to find out a bit more about her practice. We liked what we saw and decided to make an appointment for July 8th, for Addy's 2-month check-up. Before we left, I asked Dr. Y to take a look at her head and tell me what she thought. She agreed that it would probably correct itself, but said we should keep an eye on it.

I watched her head carefully over the next month. While the height difference between the left and right side seemed to even out a bit (or at least the difference became less distinct), the overlapped plates on the right seemed to remain the same. The right side of her forehead was also retracted backward compared to the other side, making her right eye open wider and appear almost bug-eyed sometimes. In addition, I began to notice that her left eye was a bit "lazy" at times -- deviating a bit to the left and down compared to the other eye. Also, the back of her head clearly showed that the left side was bigger and wider than the other, making it difficult for Addy to hold her head up straight because of the weight difference.

At our first official appointment with Dr. Y, I expressed my concern about these things right at the outset. Dr. Y completed her usual examination, and while she found Addy to be completely healthy and normal in all other ways, she wanted to check into Addy's head issues further, particularly because it could possibly be affecting her left eye.

Dr. Y called me later that day, requesting that I take Addy to an urgent care to get her head x-rayed. She told me that Addy may have a condition called craniosynostosis, which in layman's terms means that some of the skull plates have fused together prematurely. I took Addy in for the x-ray, and sure enough, the doctor who reviewed the x-ray believed this to be the case.

Although this is not a completely "official" diagnosis, I am quite sure that Addy does indeed have craniosynostosis. I have done enough research and seen enough pictures of children with the condition to convince me. We should be finding out soon whether the initial diagnosis is correct.

If Addy does have this condition, she will most likely need surgery to separate the fused bones, allowing her brain and head to grow normally as they need. I have read some places that helmet therapy can be used in place of surgery (using custom-shaped helmets to encourage the head to grow in the correct shape), but other seemingly more official reports have stated that surgery is the only possible treatment. (My guess is that the difference may be because some children have suspected craniosynostosis, but it turns out to be a different condition which can be treated with helmet therapy.) To my knowledge, craniosynostosis is treated with helmet therapy in addition after the surgery is complete.

We are still in the information-gathering stage at this point. I will soon be posting more of what I have learned up to this point (hopefully answering some questions that family and friends may have), and will update further as we find out more and continue on this adventure.

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