Tuesday, February 14, 2012

News (Good or not? God knows.)

Mason had his CT scan yesterday morning to determine if he has craniosynostosis (early fusion of his sutures in his skull)...


The CT itself went great (Mason LOVED the laser light show during it!) and the results show that, to the neurosurgeon's surprise, he does NOT have craniosynostosis!! All of his sutures are still open :)

The "good" part of this news is that he is spared the brain surgery and does not have any evidence of elevated intracranial pressure, which we are VERY relieved to hear (he's had 8 seizures in the last 30 days or so, which is the first time in over 5 months he's gotten them so we were able to rule out high pressure being the problem - most likely it is a change in meds (going from generic Keppra to name brand and back since the end of Dec - in theory this shouldn't cause problems but in actuality and according to new studies just out last year, it does make a big difference - even generic to generic) so we are just going to stay the course and try not to change much on him in the future; it may also have a sinus infection component but we're treating that w/ Biaxin just in case); given his immune dysfunction and how easily he gets infections, the idea of cutting open his skull and putting his entire nervous system in jeopardy, not to mention subjecting him to more fentanyl/pain meds....made us wince to think about, so we are THRILLED he gets to avoid this surgery because of all the risk it carried.

The other side of the coin in the situation is that, if he'd "only" had craniosynostosis, that was repairable and his head could continue to grow normally after the surgery to release the fused suture (his head circumference is so tiny as to not even be on the growth charts). Instead, he has a new diagnosis that is generally untreatable: microcephaly. We aren't sure if we'd rather have brain surgery or microcephaly based on what we have read. At Wikipedia the description says:

"Microcephaly is a neurodevelopmental disorder in which the circumference of the head is more than two standard deviations smaller than average for the person's age and sex. Microcephaly may be congenital or it may develop in the first few years of life. The disorder may stem from a wide variety of conditions that cause abnormal growth of the brain, or from syndromes associated with chromosomal abnormalities (Mason has a chromosomal deletion). Two copies of a loss-of-function mutation in one of the microcephalin genes causes primary microcephaly.

"In general, life expectancy for individuals with microcephaly is reduced and the prognosis for normal brain function is poor. The prognosis varies depending on the presence of associated abnormalities."

Mason has many "associated anomalies" but none of Mason's other "issues" appear to be life-threatening other than his low immune system which is being treated as aggressively as possible with antibody infusions weekly.  So ... we are going to hope and pray that he is one of the ones who is minimally affected ...

According to MedicineNet, "Depending on the severity of the accompanying syndrome, children with microcephaly may have:


Some children with microcephaly will have normal intelligence and a head that will grow bigger, but they will track below the normal growth curves for head circumference."

We'll be praying that even if he has a little head that he continues to grow and develop. No "diagnosis" can limit the power of God :D So far Mason has shown us that not only does he rarely ever conform to doctors' expectations, he is also a very happy, very smart little guy who knows how to problem solve very well and his congitive function continues to improve despite the small size of his head. We are going to see a craniofacial specialist next month to see if he may benefit still from a helmet for his positional plagiocephaly he got in the NICU from sleeping on his sides and back all the time.

"...the whole body, supported and held together by its ligaments and sinews, grows as God causes it to grow." Col. 2:19b

Mason's Mix

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