One year follow-up with the Neurosurgeon

Today we had Connor's one year follow up with Dr Wisoff, the excellent Neurosurgeon who performed Connor's Craniosynostosis operation. He asked if Connor was meeting his normal development milestones for a 15 month old and we reported that he is. Then he measured Connor's head which was 48cm and therefore is in the normal range - 50th percentile. As usual, which is something I love, he gave us a copy of his report to our pediatrician. To paraphrase (and translate the medical terms in brackets) his letter said:
The extensive craniectomy has completely reossified (his skull has grown back where the panel was cut out on top), there is resolution of the scaphocephaly (correction of an abnomally long narow skull) with a normal anterior-posterior diameter (head length if measured front to back), resolution of the frontal bossing (his forehead does not bulge anymore) and normalisation of the bitemporal (temple to temple), biparietal (top and sides of the skull from one side to the other) and bioccipital (back of the head) width. He also said the facies was unremarkable (meaning there was no unusual appearance or expression of the face) and that there was no new craniofacial (skull and face) or neurological (brain) abnormality. He said Connor has had an excellent functional and cosmetic outcome following his sagittal craniosynostosis correction and he did not believe there was any need for further neurosurgical follow-up.
I mentioned to Dr Wisoff about the fact that he landed on his head after being dropped when he was around seven months and he said nicely that, well,these things happen with kids and it probably won't be the last time he bumps his head. I also let him know about the seizure last week. He said that it most likely would be an impact seizure related to falling over and hitting his cheek on the magazine basket. I let him know we are seeing the neurologist next week also.
So overall a good report as we expected for Connor. Hard to imagine that this time last year we were huddled in the NYU Pediatric ICU and I was about the spend a terrible sleepless night by his bed. Now he is a beautiful and totally normal looking little boy. Of course he was always beautiful to us anyway.

Seizure Episode

We had a bit of a fright this week. This whole episode I think is completely unrelated to Connor's Craniosynostosis, but as it is head related I thought I would write about it.
Last Sunday we had a lovely day wandering around Park Slope and playing with Connor in the Old Stone House playground. Afterwards we walked down the street to grab some dinner. When we sat down to eat, Connor started getting upset. I thought maybe he was just fidgety and hungry so I tried to breastfeed him, but he wasn't interested. I decided to take him to the bathroom to change him. It was quite hot in there and he started crying and was not happy at all. He had dungarees on so I took off his shirt, washed his face and then took him back into the restaurant.
He was very hot and got very upset and then all of a sudden a giant rush of vomit came out of him and all over me. Two gushes and it was over. Naturally he was still upset. I took him to the bathroom to clean him and myself up and change his clothes, then walked outside with him in the cooler air. He eventually calmed down and cooled down. Consequently we decided it was time to go home. A pretty stinky subway ride home for me, covered in vomit.
Little did we know but this was the start of a virus I guess that the whole family picked up. A 48 hour stomach bug with vomiting and diarrhoea. Not nice - especially when one of us was supposed to be on babysitting duty. Connor was in better spirits than all of us despite the diarrhoea. Suddenly Monday at 5pm he started getting a little upset again. I think maybe he had a slight fever but I don't think it was anything too bad. Everything happened so quickly so I can't say for sure. He was crying a little and tripped over a cushion in our lounge room and hit his cheek on a wicker basket we keep magazines in. He now has a bruise there so I guess he hit it pretty hard but at the time it just seemed like another tumble for a new walker.
Unfortunately, it quickly progressed to something more concerning. He gave himself a shock and other times when something like this has happened he might start crying and maybe even hold his breath, which is worrying. This time I don't think he held his breath but he did pretty quickly stiffen up and start having what I guess was a seizure. His arms and legs rhythmically tensed and untensed and his eyes rolled up and he started gasping rhythmically. We lay him out on the floor and Michael put a small plastic spoon between Connor's teeth (although we now know that officially we should roll him on his side and not put anything in his mouth). After about two minutes I called 911. The seizure went on for seven minutes and ended just as the ambulance guys arrived at the door. He did a small vomit and then went limp in my arms.
We went in the ambulance to Jersey City Medical Center. They took the details of my description in the ambulance but did not take any of Connor's stats - temperature, pulse etc. When we got to the hospital we were taken into the Pediatric Emergency room but were then told by the nurse it wasn't an emergency. So we were taken to the general ER waiting room. And we waited. Connor had livened up and got a little upset at being in the waiting room for so long. I breastfed him and he fell asleep for half an hour or so. An hour and a half later no one had spoken to us. Michael went up to the desk to see what was happening and shortly they called us so a nurse could take Connor's stats. His pulse I think was 105/ 99 and temperature rectally was in the 98/99 region I think. Certainly not a fever by then. After I repeated the story of his seizure they sent us back to the waiting room to be called to be admitted. When nothing further seemed to be happening we decided to give up and go home and put Connor to bed rather than wait there any longer as it was already around 7.30pm.
The next day we were all feeling healthier and we took Connor to see his pediatrician, Dr Parikh at Riverside Pediatrics in Jersey City. She really is an excellent doctor with a lovely manner. She took all the details from us and checked Connor out and said she felt it was some kind of seizure and she would like us to take Connor to see a Pediatric Neurologist and have an EEG (Electroencephalogram - http://www.webmd.com/epilepsy/electroencephalogram-eeg-21508). Since it didn't seem that he had a fever at the time, she thought it was necessary to try to figure out the reason for the seizure.
When Connor was diagnosed with Scaphacephaly we had taken him to Mount Sinai Hospital in New York to see Dr Aron, a well respected pediatric neurologist. This was mostly because I hadn't appreciated the difference between a neurologist and neurosurgeon and when researching the best doctors in New York I had come up with his name. He checked Connor out at the time and told us he was fine, brain-wise and actually referred us to Dr Wisoff who did Connor's operation. He was a very nice doctor, so we decided it made sense to go back to see him. So far we have an appointment on the 29th of May. But for now we just have to wait to see him and find out the cause of the seizure.
I haven't done much research yet other than a quick read of what was said about seizures in "What to Expect The Toddler Years". But so far the only things that seem relevant are that he had the 48 hour stomach bug, had a possible fever, has had an operation on his skull and when he was around seven months he accidentally was dropped and landed onto the back of his head but didn't have a concussion and his CT scans were fine. Nevertheless we will take the CT scan from that hospital visit to show Dr Aron as well as his original CT scans from prior to his operation.
Connor at least is back to his old happy healthy self. For a few days he was quieter than usual and was very wary of any scenario where he might fall over - such as walking on the bathroom floor in case it was wet or walking around obstacles. He seems to have gotten over that now.

The First Diagnosis, Xray and Specialist Song and Dance

Two months passed and we had become pretty used to Connors looks and hadn't noticed any worsening of the squished head issue. My friend came to stay for a visit and asked if his head shape was normal. She hadn't seen many babies, I said it was apparently normal for new babies and forgot about it. The next week however, when I visited the pediatrician for Connor's two month checkup, his first words were "what's happened to his head?". After a brief worried inspection he left us alone in the room to wonder while he went off, I guess to look up something. He came back with a scrap of paper he gave me that said Plagiocephaly (an incorrect diagnosis as it turned out). He gave us a brief description of what he thought was going on, which at the time was very concerning. We knew nothing about the condition and anything that might include surgery as an option when discussing a baby is bad in my books.

He sent us to an x-ray place in West New York to have some skull x-rays done (unnecessary according to our eventual specialist who could tell from look and feel). After a day driving to and from doctors and clinics, Connor was not entirely pleased at being held in place for an x-ray. We took the x-rays straight back to the pediatrician who explained that it looked like the sagittal suture of the skull that runs from front to back down the top of the skull, was prematurely fused. Normally it should still be open to allow for the first year of brain growth and initially for the molding of the skull needed to pass through the birth canal. He told us that he had some good news as he had a colleague who could pass the x-rays to a pediatric neurosurgeon in the area that could help us and hopefully avoid the queues for specialists in New York. Sounded helpful.

A strange week passed. I tried to track own this elusive colleague who had been given the x-rays. At the same time I had been calling the pediatric neurosurgeon at his office at the University of Medicine and Dentistry in Newark, New Jersey to make an appointment. He was booked up for weeks and his secretary, of course had not heard of us. The mysterious colleague had apparently done nothing with the x-rays. I eventually got in contact with the colleague, whose name I now forget and arranged to pick up the x-rays at the concierge at his apartment in Union, New Jersey. I was actually a little nervous they would be lost and I'd have to have Connor go through the x-ray process again. The secretary for the pediatric neurosurgeon softened after hearing from me too often and found us an appointment the next week.

This pediatric neurosurgeon was named Dr Jeffrey Catrambone (http://www.umdnj.edu/cgi-bin/cgiwrap/quinnaj/76a9-cdb5.cgi?Last_Name=Catrambone&First_Name=Jeffrey) and he made us wait for three hours for our appointment. His secretary kindly bothered to tell us that he had wandered off for lunch at some point and that we could do the same and she would call us when he decided to grace us with his presence. We took her up on the offer to leave the depressing, large and busy pediatric neurosurgery waiting room. More odd shaped heads and brain damaged children than I had wished to see at one time. A sad place. I particularly remember a distraught mother and her child with a very odd shaped head. She was yelling at the receptionist that someone had to make an appointment for her because her baby needed help and she had no insurance and she wasn't leaving until she saw someone.

When she finally called us to tell us to return for our appointment, we still waited another hour. He was one of the more arrogant people I have ever met. He stood throughout the appointment, which was in a tiny room with a bed and a sink - not a doctors office or treatment room - more like the kind of room where the nurse would take blood. He informed us that his approach was to work in concert with a plastic surgeon, Dr Samuel Rhee (http://www.theuniversityhospital.com/plastics/html/physicians/rhee.htm). They would perform a craniofacial reconstruction at nine months of age. As the head would have distorted through the brain growing and pushing the fused skull out of shape, the plastic surgeon would also assist with the complete reconstruction. It sounded epic and he sent us off to obtain cat scans to return to him for a second appointment and discussion of the process.

I'm still pretty angry at the late and missed diagnosis and the initial palaver of specialist referral that followed. Since corrective surgery isn't done until after three months usually, perhaps we were saved from weeks of worry by not knowing. But still.

The New Baby in Town

At 6.15am on 8 February 2007 in Hoboken University Medical Center, New Jersey, USA after many hours of labour (of which ten hours were following being induced with pitocin) and an emergency caesarean (due to full dialation but failure to progress), the beautiful Connor arrived weighing 9lbs 9oz and 21 inches long. He had a thick head of dark brown hair. He was of course gorgeous to us. One of my first questions to his pediatrician, Dr Manuel Hugo, in the hospital was however, about his squishy head. It's normal, I was told. All babies look a bit bashed up to start with. Seemed reasonable.

As the weeks passed, he became even more lovely but I still thought perhaps his forehead was a little large or his hairline a little receded and the back of his head a little pointy. At his first pediatrician appointment in Union, New Jersey, amongst my list of questions for Dr Hugo and pretty standard concerns (he sneezes a lot and seems congested; he's unsettled and burpy between 6pm and 11pm; is he eating too much?) was one about the bump on his head - was it OK? Once again I was told it would round out with time.