June 6 neurology appt

We had our neurology appt with Dr. Nespeca this week.    Here is the bullet statement summary.

-dr is pleased the trileptal is controlling the seizures and even the inter-ictal spikes seen before.

-dr had received a call from the epilepsy foundation about Calvin's behavior at the meetings. They aren't really sure what to do with him there. (I was fully aware of how Calvin is trouble there but amazed they called asking Dr. Nespeca for help. He was pretty surprised too.  Calvin swears a lot at those meetings and it is difficult since there are so many young impressionable kids at those meetings ranging from 2-teenagers.  The format is that the parents go in one room for a parent meeting and the kids go to another room for expressive arts. There is a very high adult/student ratio and it is fun stuff so there are rarely if ever any problems. Except for Calvin who is pretty tough.  Last meeting when I went to get him to go home he refused to leave and escalated into a full fit, throwing, screaming, hitting, etc. I ended up having to hold him in a restraint for about 45 minutes before I was able to leave. The girls were being supervised by some of the supervising adults there but it was not a pretty sight. The meeting was from 6-8pm. We got home close to 10 on a school night. It was a disaster. They called me asking what we should do or if there is someone that can come and sit with him in the meetings so I can still go to the parent meetings. I have nobody. I will probably skip June and then I think July/Aug there are no meetings and maybe by Sept we can try again).

-Calvin was not at all in a good mood during this visit. Completely uncooperative. dr. couldn't examine Calvin. Calvin even tried to kick the dr. when he came over to talk to him.  This is the first time Calvin has been uncooperative at a neurology visit so this was dr. nespeca's first time seeing what Calvin is really like. Dave had to restrain Calvin in his arms during our wait in the waiting room (45 minutes) plus our visit with the dr. (30 min).

-Dr was wondering how we ever get anything done if Calvin acts like that and wondered how many hours/day we spend holding him.

-Dr. is pleased we are seeing dr. max on Monday.

- There was one unusual wave form on the EEG, not an epileptic spike, but a wave in the temporal lobe that occured each time just as Calvin was falling asleep. It is something that is commonly seen in 3-5 year olds but not in older children. This finding suggests that Calvin is either very slowly developing in part of his brain or that he is no longer developing in that part of his brain. So, while the EEG gave us good information about his seizures it also added information that makes it look like Calvin does have a physical problem in his brain causing his problems (behavior, developmental and even the seizures). dr. Nespeca did not speak a lot about this but he and Dr. Wang both mentioned it.

-3 months ago at our last visit when I told dr we were applying for regional center he thought we probably wouldn't get in and thought we probably weren't good candidate. I think he was surprised to hear we were applying. After seeing the video EEG and Calvin's behavior he had made a complete change of heart and now is completely endorsing our application. While we were in his office  Dr. wrote a letter for us to take to our regional center appeal meeting on Monday with results of the video EEG and stating that he hopes they will accept Calvin and offer our family help in the form of behavioral support and respite care.

-dr. added White matter abnormality to Calvin's diagnosis list. I think it used to say mesial temporal sclerosis but he changed it to white matter abnormality. It think he did this so it is a more general term to explain his developmental disability rather than just a term associate with seizures.

complete diagnosis list from neurology
-localized (focal) (partial) epilepsy and epileptic syndromes with complex partial seizures, without mention of intractable eplipsy
-Oppositional Defiant Disorder (ODD)
-aggression
-sleep disorder
-white matter abnormality of the brain

On the other lists (plastics, neurosurgery, ophthalmology) would be
strabismus
craniosynostosis
amblyopia