Lennon is doing FANTASTICALLY! I cannot believe what a difference the surgery made in her behavior, and I cannot believe how quickly she has bounced back!
She is 100% back to normal now (better than before, actually, but I’ll get to that in a minute). She did have “night terrors) for about a month post-op. She would wake up in the middle of the night, several times per night, crying and wanting to be held. Pretty normal I think for everything that she has gone through…but even that has stopped now and she sleeps though the night again.
Since the surgery Lennon has stopped having refulx issues. She used to spit up or throw up after almost every meal. It was improving some with age, but right up until the surgery she was on medications for it (never helped even a little bit) and we had to thicken her milk with rice cereal (that did help some). Post op we decided to wait to add those things back in to see if she really needed them…and she didn’t! NO more throwing up and no more Sandifers - type episodes.
Lennon also used to wake up in the middle of the night screaming, crying and hitting herself in the head. She would usually continue this behavior until she was given Tylenol and only then would she go back to sleep for the night. This has also stopped..
Lennon has started learning in leaps and bounds (her development had sort of stalled out right before the surgery). She is keeping pace with her twin sister now, and even passing her up in some areas.
All of the swelling has gone and now you can see the disolveable screws that they used to secure her skull through the skin. She also has some bruising around her incision and her eyes. This makes her look “tired” all the time, even when she isn’t, and the doctor said that this could take up to a year to fade completely.
Overall, I am simply amazed.
I am 100% glad we did the surgery and am terrified to think of what the repercussions might have been if we had not. It was a very difficult decision to make because there is just so little information out there on such a rare condition, but the difference I see in her is huge and she seems so much more comfortable now, I can hardly believe it.
There is one other piece of information I wanted to put out there because I am hoping that other parents in the same situation might be saved from making the same mistake we did.
As you know, in addition to having craniosynostosis, Lennon also had something called positional plagiocephaly. This is a much more common condition in which part of the skull is deformed due to outside pressures (rather than a premature suture closure as with the cranio). This is treated with helmet therapy to remold the skull.
After a long fight with an inept doctor who insisted that Lennon did not have craniosynostosis (WRONG!) and that her plagio was too mild to require a helmet (also WRONG!) we finally had Lennon fitted for a remolding helmet around June and she wore it for about a month. The normal course of treatment is a minimum of two months. Luckily Lennon’s plagio was corrected quickly because we were forced to discontinue treatment early.
I have not mentioned this much because I did not want to upset friends and family members until I knew for sure going on; but towards the end of the second month in the helmet (following a growth spurt) Lennon’s development started to backslide (she could no longer stand, would not longer say “mamma” or “dadda”, etc), she was showing major symptoms of autism (refusing to make eye contact, screaming when touched, etc), and she appeared to be having small seizures. We took her to her pediatrician who was extremely concerned and who referred her to a neurologist and a developmental specialist to begin early intervention for suspected autism.
Her father and I were hysterical.
On a hunch, we took her out of the helemt..even though it never seemed to bother her…and her symptoms improved some! Post op they are 100% gone.
As it turns out, helmet therapy may not be safe for children with cranio. One of the problems with craniosynostosis is that it causes elevated pressures in the brain because the skull cannot expand with growth. The remolding helmet works in a similar way (restricting growth in particular areas to round out the skull) and when children have BOTH conditions it can cause a sever rise in intracranial pressure. Again, because it is a rare condition there is no research on this particular set of circumstances. However, this was the opinion we were given by one expert (Dr. Fearon, link to the left) and it makes sense in our situation. I am unclear as to whether or not helmet therapy would be safe AFTER surgery to correct cranio or not…but that is the path I would have chosen had I known.
