5 weeks

So, it has been 5 weeks since my last post. I am seriously tempted to make this a private blog/journal (with nobody invited at all but myself) so that I can actually write what goes on without worrying about what people think.

June 10th we went to see Dr. Max - we love him. He is worth every penny of the $340/hour we pay him even though that amount of $ is tough to say good bye to.  He diagnosed Calvin with Personality Change due to brain damage. I will probably write more about that some other time just in case it could benefit somebody else to learn about this diagnosis.

We started Calvin on 5mg prozac and increased the dose to 10mg. It seemed to help with his general mood but not really the huge tantrums which are debilitating to Calvin, our home, our family and life in general.

There was one week in June was horrible. Calvin learned the new trick of taking the bus to school but then not getting off the bus once he got there. He was brought home one day. The next day I drove down to school to get him off the bus so that he could stay at school. That same day he was not "safe enough" to get on the bus so I had to go pick him up as well. (this means I was in the car 8:30-10 and then again from 1-2:30). It ate my day. That was day one and two of the week. The entire week was a mess.  It was rough. 

Since Prozac wasn't improving quality of life for anyone, dr said "most humane thing" would be to move to the "big guns".  We started Risperidone a couple of weeks ago. A baby dose of .25mg. It did seem to work magic for the first couple of days and though it still has some effect in reducing tantrum frequency and length, they are still there. Dr. says this "plateau" is typical and bumped the dose up to .5mg (started this tonight so we'll see how it goes).

Now Calvin takes 6 pills at night (trileptal, tenex, risperidone) and 4 (tenex and Prozac) in the morning.  For the first week of this I was pretty upset by it, but it is just life. I should not be a dramatic and even be temped to have a pity party. So many have way worse troubles. Chronically sick kids on dozens of medicines without hope of a good outcome.

Today was the 1st day of summer for Calvin. He has had school the last 6 weeks that the girls have been home. It's been a good 6 weeks.  Now we have 3 weeks with everyone home and then the girls go back to school about 2 weeks before Calvin, giving him a little of his own summer time too.

All is well.

may be a miracle

This week we had our eye checkup. Calvin's eyes appear to be fine. The drifting in one the dr. was worried about doesn't seem as bad as at our last visit. The drooping is not apparent.  His vision is fine (not going up or down) and the concerns of a couple of months ago are gone. I am not sure if the itty bitty extra effort we are putting into getting his contact in and he patched for about 2 weeks at 15 min/day made that difference or if we are just lucky. And in my view, there's no such thing as "just lucky" --  really it means we are really blessed.  I hadn't even realized that we were so lucky until Jessica asked me how everything went at the appointment. I am so quick to forget those major stresses, probably it is my way to cope, but I want to be sure to never forget to be thankful for the miracles, tender mercies and kisses on the cheek from God that we experience in our lives. We experience them so often and I am so thankful.


(I got the phrase kisses on the check from God from a great parenting book called 10 habits of Happy Mothers by Meg Meeker. It was one of my favorite parenting books of all time. It is not so much a parenting book as it is a how to be a great person so you can be a great mother book. I highly recommend it!)

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

thankful

This is a great talk. by Elder Holland from April General Conference this year.  It is 14 minutes long. If you do not have 14 minutes, at least watch the first 4 minutes. 

On one occasion Jesus came upon a group arguing vehemently with His disciples. When the Savior inquired as to the cause of this contention, the father of an afflicted child stepped forward, saying he had approached Jesus’s disciples for a blessing for his son, but they were not able to provide it. With the boy still gnashing his teeth, foaming from the mouth, and thrashing on the ground in front of them, the father appealed to Jesus with what must have been last-resort desperation in his voice:

“If thou canst do any thing,” he said, “have compassion on us, and help us.

With no other hope remaining, this father asserts what faith he has and pleads with the Savior of the world, “If thou canst do any thing,have compassion on us, and help us.”³ I can hardly read those words without weeping. The plural pronoun us is obviously used intentionally. This man is saying, in effect, “Our whole family is pleading. Our struggle never ceases. We are exhausted. Our son falls into the water. He falls into the fire. He is continually in danger, and we are continually afraid. We don’t know where else to turn. Can you help us? We will be grateful for anything—a partial blessing, a glimmer of hope, some small lifting of the burden carried by this boy’s mother every day of her life.”


As I read this talk today, I can relate to that father's prayer of supplication to the Lord.  And I realized that I receive this help all the time. I don't think there is ever a week that I don't have something fall in my way to give me a little extra help. I meet somebody at the park, I find a book, I have a "good day", something goes my way.  I have a glimmer of hope, some small lifting of the burden very often.  On days when I feel totally overwhelmed I forget how lucky I am. It is easy to wallow in self-pity and think that my life is too hard, but I should be more grateful for the many blessings I have and for the way that we are continually blessed and as Elder Holland says, allow my faith to guide me instead of "leading with unbelief".

Dave is back to a busy schedule. At best he will be with us on Sunday's every other week. I have been trying to put together a game plan on how to go to church with the kids by myself.  So far, I have come up with this plan. If Calvin is not "well enough" for church I will at least take the girls and drop them off (clare and lexey).  I have arranged for them to sit with a friend every week. That way at least they can always make it to church.  Today I did drop them off and we came home. Calvin was not happy with the clothes that were available for church or the snack I packed. After a short fit and a trip to the bathroom Calvin fell asleep.  Jo is napping too so instead of church at church I have 90 minutes of church at home. I am getting some FHE lessons ready and listening to a few talks.

test results and future appts

We just finished the IEP in two 2 hour meetings. Geez.  We have goals in place and up to date testing completed. Calvin still qualifies under Other Health Impaired but we added ED as a second category.  One of the funny things reported in the IEP was Calvin saying he "never has baths or showers"! Ha! He wishes. It is a fight to get him cleaned up once or twice a week and it is a not so secret dream of his to never have to shower. Come summer that dream kind of comes true since we count swimming as close enough. Sometimes I even take shampoo down to the pool for him. :)

Anyway, school is going well, generally speaking, for Calvin. We are lucky to have him at a school where he appears to be achieving stability and enjoying some measure of success.

June 6th we have our appt with the neurologist to discuss results of the video EEG.  However, on the last day of the video EEG last week, the dr. who discharged Calvin from the hospital said she reviewed the entire test did not see any epileptic discharges during his stay, meaning that his seizures are well controlled with his current medication - and that his behavioral fits are probably not results of sub-clinical epileptic activity. There were a few other things discussed but I will wait until we have our real appt to see what shows up on the official results before writing them here.

Knowing that. we are going ahead with the next step which is an appt with Dr. Max, a neuro-psychiatrist in town. The only bummer about him is he is a pay out of pocket guy and not contracted with any insurance. The first visit is 3 hours at $340/hour. Makes me thankful for our great insurance that covers almost everything else we do. We have had great insurance our entire married life!

We also have our appeal meeting with the regional center to try and get Calvin accepted there. I spoke with a representative at area board 13 and they gave me a few tips going into the meeting. If we don't qualify under epilepsy she recommended we ask  to be considered under the "fifth category" (not published anywhere) which is for children who "present like a disabled" individual even if they lack a compelling diagnosis. In my onion whether it is through epilepsy or this other category I think we should be accepted.

We also recently started working with a new behavior agency. Our case manager is a man, Matt.. I really like him. I also like that he is a man. Calvin responds well to men.  He has put a plan in place and we will work 2x a week to start. Once we are in full motion we will hopefully be able to cut back a bit.

Life is busy.

Another thing that has been on our mind a lot lately is how to achieve balance with Calvin's special needs and those of our other children.  We have been told more than once that the heaviest burden of a special needs child falls with the siblings, not the parents. Given how overwhelmed I feel I honestly cannot imagine that it is worse for the girls. It pains me to think of it.  The new behavior therapist, Matt will be doing is setting up a behavior plan for all 3 of the kids (who are old enough to participate). The girls often feel left out and say "no fair" at all the attention Calvin gets when he goes to OT and receives rewards for simple tasks that they do daily, which are a struggle for him. I have explained to the girls that Calvin's brain is different and he has different goals than they do and I hope that they are strong enough and resilient enough to accept this without being bitter and resentful throughout their life.

hospital stay

This is the view from the door 

 This is the moniter keeping track of Calvin's brain waves and a video of what he's up to so they can match up any events they see with what he's doing (sleeping, resting, falling asleep, waking up, happy, not happy, etc.)

 For most of the time Calvin was hooked up to the monitor and couldn't be more than about 5 feet from  the bed. He was allowed 25 min off line/day.  When he was off line he carried this little bag around that his wires went into. There was a game room on the floor with games, movies, crafts, etc. that we went to on our breaks each day.

Monday night I brought the girls to visit Calvin. He had had such a relaxing day we wanted him to have a little excitement and irritation in his life so as to mirror a more real life picture of what would happen to him day by day.  We wanted him to experience a range of emotion and experience to see what/if anything triggers epileptic activity.  The girls were so excited "mom, I've never visited anyone in the hospital! This is so fun! What room is Calvins? ...." They are so full of energy!

Dave also asked me to bring Calvin some homework to try to irritate him a bit. But it didn't work. He was happy to have a workbook and did a couple of pages happily! :) This is not our usual Calvin. However, an hour of the girls non-stop talking did get him a bit irritated.

The girls had a good time looking at every inch of the room and eating lunchables for dinner.

This is the room.

 4th floor of the new building.

DAY 2:

Day 2 - Calvin had a fit. Probably this is the only time I would actually be happy to have him have a fit, but we wanted to see what was going on in his head when he is really mad. The trigger for this episode was the dr coming in to see them and dave turning down the tv so Calvin couldn't hear well and then talking over his show. Dave had to hold Calvin in a restraint for a couple of hours so he wouldn't tear off his wires. He calmed down and the rest of the day was uneventful.

Dave had to go to work so Clare and I came in to keep him company from 2-7pm. Clare played games and watched TV with him. By 7 she was bouncing off the walls! (It was amazing to see the contrast between the healthy girls and Calvin. Normal kids should not be able to sit in the same spot for 48 hours).

DAY 3: The dr. made rounds at 9:30 and it took another hour or so to get the discharge orders in place for them to leave. They arrived home at noon.   The dr. read all data before she came to see Dave and Calvin and discussed everything she saw (next post). She also re-read his previous EEG from last summer to compare.

The admitting physician was not our usual neurologist   Our neurologist this week was Dr. Wang.  She was very kind and did a good job with us. Normally we see Dr. Nespeca.  We will go to Nespeca in two weeks to discuss the official results.


Overall, the study went very well. We got a lot of data. Cavin was super well behaved for the most  part which was good. He got lots of rewards (one per 12 hours) for being cooperative and sometime soon we will all go to Iron Man 3 to celebrate him keeping his wires on for 3 days.

how happy is Calvin on day one of his inpatient video EEG?

Happier than a witch in a broom factory!

unlimited TV, and wii

no sisters

no mom

room service.

one happy boy!