Anger. Fear. Worry. Anger. Desperation. Heartache. And a lot of Anger.

Well folks, it seems things are going to get really hard again.  My brain cannot even begin to process what is happening.  I can't believe we're doing this again.  I feel we've paid our dues, my son has suffered enough.  Why would he have to suffer more????

Dr. B, our neurosurgeon, did NOT read the CT report at our appointment last week.  He just scanned through some images on his mouse and said it looked like things were fused and we would need to see Dr. S, the craniofacial specialist, again.  See the last blogpost for details: Too Much Brain to Contain

Well last night Jayson's eye movements were crazy.  They had been escalating for the past 2 1/2 weeks, and I mentioned it to all of our doctors.  They carefully noted it down, but left it at that.  I noticed after several video tapes I made of Jayson's eye movements last night that I had been focused on the inward pulling and increased nystagmus of Jayson's LEFT eye.  This distracted me from the real concern-- his RIGHT eye.  Jayson has Duane Syndrome in his right eye.  It shoots up when he uses it to look left and it doesn't look right of midline.  Lately, it has few movements at all.  I sat and compared this video to past videos I have taken of Jayson and his eyes to see that his right eye still had some movement from side to side.  Not anymore.  The left eye is moving so much to compensate, but I think my son's vision in his right eye is greatly affected right now.  The thing about Duane Syndrome is that it is congenital and unchanging.  It is caused by damage on the 6th cranial nerve.  When there are further changes to the eye movements with Duane Syndrome it is due to pressure on that 6th cranial nerve... namely, Intracranial Pressure.  Did you just cuss out loud??  Me too.  Shit is right.

So then I realized that Dr. S has yet to call us to discuss the CT results.  Dr. B mentioned there was some fusing, but I really didn't know what that meant beyond that.  It had been a week since the CT scan and I got a crazy idea to look at the results myself.  After looking at the EEG results on my own I swore I would't do that again... but I couldn't help myself.  I was a worried mom, and I needed to know if it was worth making a bunch of phone calls the next day.  I never in my wildest dreams expected the results I read.  See for yourself.

Basically this report says that nearly every one of Jayson's sutures in his skull are fused.  To give you an idea of how many sutures we have and when they are supposed to fuse, see this chart:

Jayson's report said that his Metopic, Saggital and Coronal sutures were completely fused.  Parts of his Lambdoid were fused, and the Squamosal was not fused.  No mention of the others.  You can see that most of those sutures are not supposed to fuse until his 20's.  The report also mentioned scalloping in the inner table of the skull.  This means, permanent damage to the inner bony layer of the skull due to erosion.  How do things erode?  With liquid.  That is why the report suggests this is evidence of intracranial pressure, which leads me to believe there is extra fluid on his brain.

This is bad.  This is very very bad.

This could explain the symptoms I have been freaking out about for months:

• increased seizures
• new generalized seizures
• new eye movements
• headaches
• migraines
• rubbing his face, eyes and ears in pain
• sleeping problems- sleeping too much, and very interrupted sleep patterns
• dilation of one eye
• microcephaly
• pushing his head into surfaces to cause pressure-- thought to be "sensory"
• crying uncontrollably and rubbing his head
• random crying and fussing

Heartbreaking, right?  What is really heartbreaking is the road we are heading down...

I am waiting for calls back from docs and for the GO signal, but it looks like Jayson will be going under anesthesia very soon for a special eye exam that checks pressure.  Our cranio doc was under the impression we had already done that, apparently.  The cranio doc said he would call neurosurgery today to see if they would like to have a monitor placed. During this procedure, the neurosurgeon will drill into his skull and insert a monitor into one of J's ventricles which will measure pressure for 24 hours in the ICU.

What comes next is even more heartbreaking.  When there are more than 2 fused sutures it is called "Multiple Suture Craniosynostosis".  When this condition happens in a child with a syndrome it is called "Multiple Suture Syndromic Craniosynostosis".  It is recommended that surgery to open up and mold the skull happens before 12 months.  Clearly this is not the case for us.  This was missed by so many specialists it is beyond ridiculous.  Due to this fact, it is now a very complex, complicated process and my understanding is that it is repaired one suture at a time.  We may be looking at many, many skull and brain surgeries in Jayson's future.  When the skull has gone this long being fused, it causes many problems within the head--- eye placement, vision, ear placement, hearing, mouth and jaw alignment issues, swallowing, respiratory issues, etc.  Therefore, each skull surgery also tends to involve reconstruction of different facial features so that they can function properly.  No, I have not been told this is our road.  I just did research about Multiple Suture Syndromic Craniosynostosis and that is what I found.

And there is even more heartbreaking news.  Not all craniosynostosis results in intracranial pressure, but Multiple Suture Syndromic Craniosynostosis has an extremely high likelihood of intracranial pressure.  When it is not treated early on, typically before age 12 months, there is often short-term and long-term brain damage.   We will never know, but to think that maybe some of my son's brain damage could have been prevented had we been more proactive is seriously heartbreaking.

My boy is in pain.  He has pressure.  And his life is in jeopardy.  Intracranial pressure can cause increased seizures, brain damage, stroke and death.  It is nothing to mess with.  I am hoping and praying Jayson's pressure is not at a severe level and that perhaps we caught this in time before more permanent damage is made.  I am hoping and praying Jayson's doctors act quickly and we can get quick answers with the best plan for the best outcome for Jayson.  I also hope and pray I can keep my cool because I have never in my life experienced this level of anger and frustration.  My concerns for his microcephaly, head shape, seizures, and brain have been dismissed so many times and now we are in crisis mode.  Please keep my sweet boy in his prayers.  Please keep his doctors in your prayers.  Please pray for my and Mike's strength that we can go forward with faith and not crumble from the heartache.  Thank you for all of your love and support.  I will keep you updated.