like calvin

Today I met a new friend at the park. She has three little kids including one boy with down syndrome.  On the way home Clare asked, "Mom, you know that boy with blond hair? Is he kind of like Calvin?"  I said yes. I explained how he has an extra chromosome and develops differently than most kids.

I thought it was interesting that clare grouped Calvin and this boy in the same category. She doesn't have language for them like special needs or handicapped but it is plain to see, in her experience, that some kids do not behave like others.  I was next going to write that I hope she has compassion for these special kids but I do not even need to say that. I know she does. She is a sweet girl.

a month

It's been almost a month since I've written.What have we been up to.

1. tyring meds. We added a ADHD medication on board. vyvanse. It seems to help a little at school. that is good. Now he's on 5 medications. I don't expect any major changes soon. He seems to have made a little improvement overall. Dr. is hoping in home ABA therapy will make up the difference. Just this week we were denied ABA coverage again though so I am not sure what to do. pay out of pocket, keep fighting or drop it all together and try something else. The problem is that I don't want to fight so long that we never actually get any help!!!!

2. fighting with insurance.non-stop. over ABA therapy (we were denied again) and covering our choice of neruo - psychiatrist. (still fighting).

3. looking for new schools in case we move next year. Trying not to die of a heart attack at the thought of pulling Calvin out of a school where he is finally stable (and has not been stable in 4 years).

4. Having the usual ups and downs.

special soul

Tonight I was having a conversation with my girls (age 5 and turning 8 next week) about keeping the commandments, following Jesus, etc.  One of my kids asked in all seriousness, "will Calvin go to heaven or hell?" I am sure she asked this because he hits, screams, swears and is overall not very christ-like in his attributes so I could see how she might think those behaviors would not be considered keeping the commandments.  I explained that even though Calvin behaves very poorly some of the time, he is doing his best and Jesus will judge (not us) so we need not worry about that.  If he is doing the best he can, he will go to Heaven for sure. If his brain damage does not make him act the way he would like to, God will judge him on the intent of his heart.

Some relevant background for those who don't know me: my personal belief is that innocent children and people housed in minds that are unable make mature and informed decisions will not be held to the same standard on judgement day as those who knowingly and purposefully sin against God of their own free choice. I also believe that we lived with God before we came to this earth and that we chose to come to earth and receive a mortal body with all of the challenges that come with mortality, including illness, aches and pain.  After this life, everyone will receive a body restored to its perfect frame. For many of us, it will be our 20-30 year old body in the prime of life. For others, it will be a body that is perfect in ways they never experienced on earth. They blind man will have sight. The crippled will be whole, the sick will be healthy, the mentally ill will have sound mind.

Now back to our conversation. My 8 year old only partially understood the answer. While she acknowledged that Calvin has perhaps a disadvantage and is doing his best with an imperfect mind, she also said that she has a really hard time sometimes too because of piano practice!  She does not know what a blessing it is to have ones hardest challenge in life be the requirement to practice the piano for 30 minutes/day!

As the conversation moved in other directions I paused to reflect on my boy and the soul that is housed in his imperfect body. Did he know before he came to earth what his life would be like? Did he know he would be difficult? Did he see how he would behave? Know that people would not want to be his friend? That people would be scared of him? That he would cause heartache and pain?  Did he agree to all of this knowing it was his mission on earth?  As I though about these things I had a brief vision of who Calvin really is. The noble soul he is.The pure humility of his character. And it gives me reason to do better. To be more patient and more loving. To be more worthy to be his mother.

problems and solutions

We've had a crazy few weeks with Calvin mastering the new trick of not getting off the bus at school. My gas bill has skyrocketed with all the trips I've made down to his school (30 min each way x 20 times since the school year started). We really needed an idea to help with this. Plus, it wastes my entire day. Anyway, ABA uses the idea that you reward the positive and ignore the negative. While I had been trying to think of a way to punish Calvin for making me drive down to school, since it is so punishing to me, I realized there really isn't anything in that arena that would actually work. So a reward for getting off the bus is going to be our first try -- if he gets a treat if he gets off the bus. Last night we went to the store and he picked some fruit snacks and he gets one little bag if he gets off the bus at school.   He told me "Mom, that is a really good idea." I got a kick out of that. Hopefully it works long enough to get him back in the habit of hopping right off the bus when he gets to school!

We will be starting in home ABA therapy soon. It takes a while to get approval from insurance. We had an evaluation and another meeting to go over treatment plan. we are trying to get approved for 4 hours a week in home plus 2 hours of consult. That would be awesome!    We are making up for lost time. We should have started this YEARS ago. 

What's new?

We continue to try medications, hoping to find a magic mixture.  I was talking to an old friend a few days ago who shared the story of her (now 40 year old) nephew who has a similar temperament to Calvin. She mentioned it took YEARS for the family to find the right medicines to help him and he is doing remarkably well.  It helped me to realize I shouldn't give up. However, it does get me to worrying about the $. We are paying out of pocket for this psychiatrist and it is adding up. We've hit the $2000 mark after 4 months. We'll be in trouble if we have to keep this up all year. I need to call insurance and see if there is a way for them to pay for this doctor.

We've had a lot of trouble with the bus the last few weeks, as I had previously mentioned.  The bus drivers recently "bid" on routes and Calvin's driver who we have loved got out bid for Calvin's route. We have a new driver now who has already had several complaints from her and I am worried a bit about her ability to endure 3 hours a day with Calvin on her bus.

Elder Holland gave the most amazing talk today, speaking to people with mental illness or who care for people with mental illness. It could have been given to just me, but I know there are so many who suffer with various mental illnesses.  I'll post the link when it becomes available.

if you can't beat 'em, join 'em

For a couple of years I have been somewhat bitter about high functioning autistic children who receive tons of services, are able to function in mainstream classes and are making positive progress with exceptional support and help while I have watched my own child make backwards progress over the course of 3 years move from mainstream school to a position where he will probably never be in mainstream school again.    I have tried to get him supports and services he needs but he has been denied services by insurance and regional center.

Most people who know Calvin assume he is autistic. When we are out in public and he is on the ground crying or throwing a fit we say, "oh, don't worry, he'll be fine, he is autistic" and then people say, "oh, I understand." Calvin goes to a school with a population made up of more than 80% autistic students, all of whom are getting great therapy in their homes to support their difficult behaviors.

Well, after trying for years to get what I need for Calvin through the avenues I knew I finally decided that the only way to help him is to have him formally diagnosed as autistic as well.  While his true disability stems from his brain damage, he shares enough characteristics with the autistic population that he easily fits within the DSM criteria for a diagnosis. Last week he was diagnosed with autism by a psychiatrist.  Now we will (hopefully) move forward with behavior therapy in our home and maybe even re apply to the regional center in a couple of years.

long week

Calvin has a new trick. He falls asleep on the bus ride to school and then is too sleepy to wake up, or is pretending to be too asleep to wake up. I'm not sure. He was legitimately snoring and drooling on a couple of occasions..... who knows

This week so far 4/4 days I have driven down to his school to get him off the bus, or on one day because he wouldn't get on the bus at home so I drove him in. I also did this 2 days last week.  If you're wondering if my house cleans itself or if the groceries shop for themselves while I am gone, the answer is no.  It is a 9-noon affair each day. Sometimes it is 9-noon in and of itself if I get there and he refuses to go in to school; then I just sit in the car and wait for him to decide to go to school.  Sometimes, the 9-noon includes my recovery time afterwards such as walking the beach which is what I have found to be the best way to make the most of driving 30 min down to san diego and not being angry about missing my entire morning.

One of the medications Calvin is on makes him sleepy. We have now lowered the dose twice. So, now we're back to a dose that isn't even effective.  I might try going up a 1/2 dose in a couple of days and see if that is any better.

Could be worse.  I see so many people with many more serious troubles than I have and can't help but feel grateful for what I have. I was talking to a friend this week who has had severe trials in her life. She said she thinks if we all put a shoe in the middle (representing our trials) there wouldn't be many of us that would want to take somebody else's burden.  Each of us becomes accustomed to  the kind of experience we are going through even if it is hard.

There is a 3 part video on mormon messages here that is very good.  It describes how we learn to rely on the Lord for our daily needs. Elder D. Todd Christofferson shares a story when he was going through a personal trial and had to completely rely on the Lord to help him get by day by day. Without this experience he would not have learned this lesson.

I sometimes wish I could be more like those described in Alma 32, "and blessed are those who are humble without being compelled to be humble."  I guess I am one of the more stubborn ones that needs more reminders to be humble.

children's hospital

Today we had a regular follow up visit in neurology clinic. I am always so humbled when I go to the Children's Hospital.  There are so many families with children so severely handicapped. I find myself feeling extremely grateful for the blessings that I have and feel a prick in my heart for ever thinking that my life is too hard.  I look at other parents who are FULL time caretakers. They don't have time for anything else, I see other parents of children who are terminally ill, I see parents whose children never speak, never walk, never progress past diapers. 

obituary

A friend of a friend died this week. This morning I said to Dave, "Oh, we should look up the obituary."

Calvin said, "BITCHuary! Awesome. What's that?"

Mom said, "no Calvin, Obituary. It's what you write about somebody after they die telling how they died and where the funeral is."

Calvin, "oBITCHuary"

I had to laugh. Never really thought about this before but it definitely adds a new twist to reading obituaries!

regional center

Judges decision came this week. He determined that Calvin is not eligible for Regional Center services.

 

I have a 12 page document that summarizes the Judges review of Calvin's file.

 

 Here are the concluding paragraphs:

 

 "The weight of the evidence does not establish that claimant's epilepsy is driving his behavioral problems and as a result, the evidence does not establish that claimant's epilepsy constitutes a substantial disability.

 

Dr. Nespeca, claimant's treating neurologist, was unable to conclude, based on the 48 hour EEG, that claimant's epilepsy is the cause of his behavioral problems. In addition, Dr. Max, the neuropsyciatrist who evaluated claimant following a referral from Dr. Nespeca, specifically found that claimant's behavioral problems were not the concurrent manifestations of his seizures, per se.

 

The opinions of these physicians are credited over Dr. Marshall's testimony......Dr. Max's and Dr. Nespeca's opinions are given greater weight than the opinions offered by Dr. G, claimant's father."

It is upsetting. The main reason it is upsetting is that we feel the judge made a mistake. It isn't that he doesn't think Calvin is too high of functioning, or isn't disabled. It is that he believes Calvin's doctors said epilepsy isn't causing his disability. There, he misunderstands the dr's notes. If I had it to do over again I would have asked Dr. Max and Dr. Nespeca to add a letter describing how epilepsy contributes to Calvin's disability. Anyway, not sure what we're doing next.  Just moving forward day by day.

epilepsy lesson

Ever since we had our hearing we have been re-playing in our minds things we could have said better. Overall things went well and we feel good about it, which is great.  One of the areas that we wish we could have been more clear on was actually the basics about epilepsy. Our expert witness jumped right in talking about traumatic brain injury and the judge had no idea how this related to epilepsy. However, it is key to understanding Calvin's condition....

So, here's a basic lesson on epilepsy. There is more to epilepsy than just seizures. Of course, seizures are 100% part of the disease and necessary for a diagnosis of epilepsy to be made. However, there is so much more.

Here are the 6 parts of the disease.

1. Seizures - there are many kinds. Grand mal seizures are the kind where people are shaking violently all over their body. There are mini- mal seizures, simple partial seizures, complex partial seizures (Calvin has these - they effect more than one part of the brain, involve body  movements and loss of consciousness and no memory of the seizure when it is over).  Some seizures the person loses consciousness, some the person does not.

2. Pre and post seizure activity.  Before seizures some people experience auras - weird feelings, smells, or sensations. For some people the aura is hours. For others it is seconds. I met a girl who has an aura about 10 seconds before a grand mal seizure. For her it is just enough time (usually) to sit down or put down whatever she is holding so she doesn't get seriously injured during the seizure. I met another person who always gets sick and throws up before a seizure.  Not everyone experiences auras before seizures. For the type of epilepsy Calvin has, sometimes the auras involve extreme mood and behavior problems. We are not sure if Calvin has these auras or not. He certainly has the extreme mood and behavior problems but we are not sure if they are auras.

After the seizure there is a post-ictal period, often involving the intense need for sleep. Seizures are very active and intense activity for the brain and the brain will need rest after a seizure. Calvin used to have a lot of episodes of pallor followed by deep sleep. He would fall asleep on the floor, at school, in the car, at the dinner table. He would just look at me and say, barely audible, "i'm tired" and then instantly go to sleep. We suspect looking back that these were seizures he was having that were not manifest in the usual way.

3. Sub clinical seizures -  Seizures are intense activity in the brain of rapid firing of neurons. This can happen anywhere in the brain. Sometimes it will happen and there will be nothing on the outside that indicates the seizure is going on. If it is in the motor strip (the part of the brain controlling arm and leg movements) then that movement will be seen. But, what happens if it is in the part of the brain that controls smell, or rage, or vision? You could smells strange things, get super angry or see "things" ....  Calvin has most definitely had sub clinical seizures. He may still be having them. It is hard to say.

4. Brain Damage.  Seizures cause brain damage. Imagine that your neurons in your brain are like an electrical wire designed to carry a current. It can function properly for a LONG period of time, however if you over stimulate the wire, giving it too much voltage you can damage the wire or even cause it to burn out permanently.  Translated to the brain cells, that means the repeated seizures along a certain pathway can kill the brain cells.  Calvin's MRI shows evidence of brain damage in the area he had his seizures.  Of note, his brain damage is more than likely what can account for a lot of his behavior and mood problems.  I am sure you have heard of people who have stroke and then turn into a mean grumpy person. That is sort of what Calvin is like.

5. Medication. The medications that treat epilepsy are not without side effects. Since the epilepsy itself is over active neurons, the medication works to slow down the firing of those neurons.  The problem is that slowing down the misfiring neurons with a medicine will also slow down the "normal neurons" so overall brain function is slowed. It is a bummer.   No medication is without side effects. Many also effect mood, are tough on the stomach and have other undesirable effects. We have been lucky that our first medication has worked with Calvin and the side effects have been minimal. of course we can really see or measure how much it slows him down cognitively but it is nice that he isn't having other side effects on top of that.

6.  Epilepsy is a progressive disease. It is not curable. It is treatable with medication in some cases. Often even after treatment is successful for a time there will be breakthrough seizures as the disease progresses.   Part of the reason epilepsy is progressive is that the brain "remembers" the epileptic pathways so once you've had a seizure it is easier for you to have another. Think of learning an instrument like the piano. If you practice scales every day, eventually you will not even have to think. Your fingers (and brain) will just know what to do. Or, in a sport where you condition your muscles to kick, hit or shoot just perfectly. Likewise, the brain creates these pathways of rapid firing and the brain remembers and repeats them, often adding to them so that seizures get worse over time. That is why dr.s do their very best to stop seizures completely with medication. Once you have them, they will progress.

keeping it real

August is all about surviving.  I have to say I am so thankful that so far the weather is lovely so I am at least not battling the heat.  It is such a blessing that Calvin only has a 5 week summer break.  He does so much better with school as part of his day and I do so much better when he is gone for a big portion of the day. Why? Calvin breaks things. He tore up two library books this week. He hits things and people. He is like a crazy dictator.  The girls probably don't think it is that bad because I give up on chores and getting things done and just stick them in Dave's office and let them watch netflix so that they won't set off Calvin.   Clare missed 2 days of piano last week b/c Calvin wouldn't let her practice.   Some days I try to go out and do things b/c a lot of time s little fresh air and change of scenery helps us all out.  But, on the other hand, when things go south and I am out, it is horrible and I am completely stuck. So for the most part we do not go anywhere or do anything.  If I do go out, I know I will have to buy whatever Calvin wants or else he will either fall apart or start screaming profanity. It is expensive.

Yesterday Clare had piano lessons. It was a nice day so the windows were all open. I sat in the driveway with Lex, Calvin and Jo. Lex brought a couple of games to play (that's what we usually do while Clare is in lessons) and Calvin really wanted to play her game. She didn't want to have him play her game.  He had his own game and we had played a round of his game first. Anyway, it led to lots of screaming the F word and him hitting lex. When Clare walked out of her lesson she said, "why was Calvin screaming the f word?" "Why was Lexey crying?"  I am so thankful that for all but 4 of Clare's lessons, Calvin is at school so he doesn't have to sit there with me.

We recently read the story in 3 Nephi where Christ visits the Nephites and heals all of the sick. Clare said, "if we were there I would have taken Jo (who had a cold) " I said, "if I was there I would take Calvin to him." and Clare replied, "oh, because of his brain."   It was interesting that Clare understood why I said that, but I also hope the know every day that Calvin is the way he is because of illness and that it is not normal and not okay for anyone to act like that normally.  I have told the kids that Calvin has a spot in his brain that is damaged and that is why he gets so angry and has some problems. I think they sort of understand but it probably won't be 'til they are adults that the fully comprehend the situation. For them now, it is completely normal because whatever you grow up with you think is normal. Eventually they will look around and see that it is not normal. hopefully they are strong enough and wonderful enough to not be bitter about the situation and to have extra kindness and compassion instead. Dave said he had a companion on his mission who had a sweet down syndrome sibling and was super bitter about it and completely hated the kid. I have worried that the girls would be bitter about Calvin but I guess it isn't so much the situation as much as it is the heart that determines how one feels about things.

Jo, my 2 year old said, "F" this week.  Calvin said, "what the..." and Jo filled in with "f". (and I don't mean the letter f. I mean the 4 letter word that starts with f)

The swearing has been pretty bad lately. When I was at the psychiatrist a couple of weeks ago he was asking how things are going in many aspects of life.  I mentioned the swearing is pretty bad these days and he said, "you've just got to ignore it."  I realize that swearing does not hurt anyone or anything. Obviously if I had to pick between him hitting, breaking and swearing, the swearing is the one that really is the least serious but it so bothers me.  If I didn't have other young kids at home it would be easier to ignore. And if he didn't yell bad words in public it would be easier to ignore. It is embarrassing.  And Calvin knows it is one of my buttons and he loves to push it.

For a few months we had a rule if he didn't swear all day he would get 30 minutes of screen time before bed. I'm not sure why that stopped working.

The girls go back to school in less than 2 weeks. Once they are back things are a little easier with just Calvin and Jo at home. Calvin is very sweet with Jo and they are about at the same pace.  Both need lots of home time and snacks to keep afloat.  The other girls have so much energy they get bored and bounce off the walls and tease and really could use more to do than we are generally up to.

Just documenting b/c I am told by our psychiatrist that things will get better. When they do, I hope to look back on this and say, "wow, those were tough times, I'm glad they are gone."  In saying this I have to admit that things really could be worse. I really hope that I don't look back on this one day and say, "boy I had it easy back then, why was I complaining." Heaven help me if we get to that point.

don't want to lose this link

http://www.publiccounsel.org/tools/publications/files/IPP-and-IFSP-Advocacy-Manual.pdf

feeling good today

This afternoon I took Calvin to a birthday party of one of his friends from school. It is always interesting going to events with kids from school for several reasons.
1. Unlike public school where all the neighborhood kids go to school together, kids from Calvin's school live all over the county. It was 30 minutes to get to this friends house today and in a part of town I have never been to before. Talking to other parents who were there, they were all from different parts of town and each of them probably came 30 minutes as well, but from all different directions.
2. As parents, we do not know the other kids at the school or the other parents. Kids arrive on buses and go to class. The environment at school is very controlled so even when I do stop by school I do not see many kids.  Since kids take buses to school we never see the other parents at school. It is only at these rare social events that we see the other parents.
3. The nature of these special needs kids is that they aren't amazing communicators or reliable reporters on the events and details surrounding these friends and their families.   I don't hear from Calvin about the ages, parents, families and home towns of his peers. Also, of course Calvin doesn't know details about diagnosis, treatment and other interesting facts about his peers.
4. not many play dates to speak of for many reasons. Distance between homes probably being biggest factor.

Diagnosis of kids that were there:
Autism, significant expressive language disorder
Aspergers, ADHD, ODD
bipolar, ADHD, ODD
Autism
Aspergers, ADHD
(Calvin: Personality Change, ADHD)

Did not talk to everyone there but these were the few I did talk to.

All the kids there have the school districts paying for the non - public school. Everyone but us had to hire an attorney or advocate to get the district to pay for school.

I enjoyed taking Calvin to the party. It was fun seeing his friends light up when he arrived. They were all thrilled to see each other. They swam for a little while and then had cake and hung out for a bit.    The kids have been out of school for about 2 weeks and haven't seen each other since then.  It was also nice riding in the car with Calvin. On the way there he was kind enough to choose Sunday music to listen to. on the way home he was kind enough not to blow his party whistle and just talked to me a little bit. Most car rides are kinda stressful, usually because the girls are singing or in his seat or something. This was nice.

It was interesting talking to the parents. These parents have been through so much. One mother recently had to place her son in a group home b/c he was so violent with her at home (he is 11 years old) . It was heartbreaking to hear about this. Another mother had to place her daughter in an inpatient mental hospital for a few weeks to get her stable on medications (when she was only 3. Things are better now and they are very successful with the medication they are on). One mother got placement at the non-public school after her son was physically abused in his district special education classroom.  The lives of these families with special needs children is stressful, intense and heartbreaking at times.  It is hard work.   While there are many similarities between children, dealing with behavior problems, communication issues, school placement, regional center services, insurance battles, extended family ... each situation is so unique and personal and each child is one of a kind.

One of my favorite people I met today was the mother of a 13 year old boy. He is most definitely autistic but I never talked to her about diagnosis or treatment or anything. He has a sweet disposition.  She was a good mother. Had a great sense of humor about things and was very resourceful and knowledgeable.  She is also a great mother bear, obviously an advocate for her child and making sure things are right with him. Turns out she is also an aeronautical engineer. Brilliant in math and sciences. Anyway, always neat to meet new people.

One of the other moms is now an educational advocate, helping other families to get the services they need for their special needs children.   I have noticed as I've talked to advocates and attorneys in the field that many became interested in a career in advocacy because they have a special needs child.

As a side, every child there is a client of the Regional Center except Calvin (regional center provides services for people with developmental disabilities including autism, epilepsy, down syndrome, cerebral palsy and mental retardation). We are in round three of our fight to get Calvin accepted at regional center. We have appealed twice and now we go before a judge at a fair hearing where the final decision will be made.  We have been working hard to try and get ready for this. I will write more after it is over but don't want to have too much on the open internet until it is done.

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!

inpatient EEG

Monday Calvin has a 3 day inpatient EEG. He reports at 9am Mon morning and will stay 'til some point in the day on WED. He will have lots of electrodes on his head and will not be allowed to leave the room at all during that time. Dave, bless his heart will be staying with him most of the time. Calvin is excited to miss school and have free reign of the TV. The girls are excited to have a "girl party" while he is gone!

Hopefully Calvin will cooperate enough for us to get the answer to our important question:  Are his troubles a consequence of sub clinical seizures?

tough times

We have our ups and downs with Calvin. Sometimes thing go pretty smoothly for days at a time. Other periods, we have days in a row of really tough times, or we have a mix of good days here and there and bad days here and there. You just never know what you're gonna get!


Here are a few of the things that happen when things are not going well. When the incidence of these things increase it is a bumpy road. I have started to keep track of just these few items b/c it helps me to gauge when he is really bad. Sometimes it is hard to keep track of how often something happens as it may feel like it happens "all the time" or "hardly ever".
-not able to get on the bus in the morning. (not compliant)
-not being safe on on the bus and then I have to pick him up somewhere along the way (usually about 20 minutes from home) and drive him the rest of the way in to school. This is a tough one b/c the kids on the bus are all late as well as Calvin and it takes up my entire morning. The only way I am able to recover from this one is to pack the dog along and go to the beach for an hour after we drop him off.
-pulling his contact out of his eye and tearing it up.
-phone call from the school saying he had to be put in a manual restraint due to unsafe behavior
-not able to receive his reward for having clean language all day
With the above, we usually also see an increase in:

-full on fits out in public with swearing, destruction, hitting
-screaming fits at home, hitting of sisters, breaking things
-swearing



Most of April was pretty good. We actually had a couple of good weeks and very few incidents. The first week of May (right after my other blog post about how things were going well) we had  a terrible week. I wanted to write about it at the time for my own records but I couldn't bring myself to re-live my week by writing it down.  In a week period we went through 2 contacts. I drove him to school one day and had to pick him up off the bus mid-way through the route one day. He was put in a restraint at school.

That same week the behavior therapist we were working with told us she would not be able to continue working with him (after Calvin had a huge fit at home while she was here). Since she is not working with an agency she doesn't have the resources to get Calvin more help, she is not insured or covered with liability and she is pregnant.  Even thought I was extremely depressed about this news for days, I tried to be grateful for the things she did teach me and for helping me to get on the right path in seeking out behavior specialists as we move forward.  In 15 years of working she said she had never had to discontinue working with a child and that it wasn't because Calvin was SO difficult but just because of circumstances. Still, like I had many times before, it made me feel like I had the MOST difficult child on the planet.

We also found out that regional center did not accept us. The letter says "Calvin does not have a qualifying condition such as autism, epilepsy, cerebral palsy ..."  WHAT!?! He does have epilepsy, so why are they saying he doesn't have a qualifying condition?  Well, since he has only one medication they say he is controlled.  I will appeal. From what I hear, everyone has to appeal to be accepted. We'll see what happens with that.

Fortunately, while I was wallowing in my pit of despair over my terrible week and losing the little bit of hope I held with my behaviorist quitting and not getting accepted to regional center, I met a lady at the park who works for another behavior agency in town and who does not have an indefinite wait list like I had seen at other places.  We are working to get started with that agency later this month.  I tried really hard to be grateful for meeting this woman and realizing that there is no need to throw in the towel and quit. The Lord has been so good to us so far and continues to show tender mercies enough to keep us afloat.

I am sort of a slow learner, but one thing I am learning is that while I should have hope, I should stop thinking I will find a quick fix.  I gave a lesson in RS Sunday about trials. One of the things I learned is that when going through a trial we need to be prepared to accept the Lord's will and like the Savior say, "if thou could, let this pass, nevertheless, not my will but thine be done."  We cannot expect to become like the savior if we are not tried as he was, or if when we are tried, we expect to have immediate relief.  We need to partake of the bitter cup without becoming bitter. We need to "not shrink" from our trials.

There was an article I ran across by Elder Maxwell where he said, "not shrinking is more important than surviving." In his case, he was dying from cancer. He knew that not shrinking was more important than surviving because he knew he would not be surviving. In my case, I am not going to die. I am going to survive  In my case, not shrinking is more important than JUST surviving.  I am going to survive but it will take work and  diligence for me  not to shrink from my duties as a mother to all of my kids. To me shrinking is yelling, losing my temper, goofing off on the internet instead of reading to them, not being as kind as I should be. I think not shrinking can mean many things and probably means something different to everyone and even could mean different things to the same person at different times in life.  However, in all cases, it means that doing our best and not losing sight of what is most important.  Watch this 3 minute video:
http://www.youtube.com/watch?v=l70e1TfN34w



I loved these talks about trials:

Elder Wickman - But if Not - General Conference October 2002 

https://www.lds.org/general-conference/2002/10/but-if-not?lang=eng
Elder Bednar - That We Might Not Shrink - CES devotional March 3, 2013
http://www.lds.org/broadcasts/article/ces-devotionals/2013/01/that-we-might-not-shrink-d-c-19-18?lang=eng
Elder Maxwell - Apply the Atoning Blood of Christ - Conference October 1997
https://www.lds.org/general-conference/1997/10/apply-the-atoning-blood-of-christ?lang=eng
Elder Nelson - With God Nothing Shall Be Impossible - Conference April 1988
https://www.lds.org/general-conference/1988/04/with-god-nothing-shall-be-impossible?lang=eng

conversation

Calvin has a friend that likes to call and talk on the phone sometimes. He is from Calvin's school (special needs child).

Here is the conversation tonight. Calvin talks on the phone on speakerphone so we got to hear the entire conversation.

Calvin: hi
Friend: Calvin, I got bad grades.
Calvin: oh
Friend: Calvin, I feel really bad that I got bad grades.
Calvin: what'd you get?
Friend: a B-
Clare pipes in: Ohhh, that's bad
Calvin: oh
Friend: Calvin, I feel really bad about my bad grades (almost crying)
I whisper to Calvin: tell him if he is doing his best, it is okay
Calvin: If you are doing your best, it is okay.
Friend: (totally sobbing) Thank you Calvin, you are the best friend I have every had. can I call you again tomorrow?
Calvin: yes, bye, (click)

All of Calvin's phone conversations are funny because Calvin is so abrupt. This one was especially sweet/funny because of the topic as well.

patching update

Tomorrow marks a week since we started patching. We are starting at just 15 minutes a day. The first day was amazing. We got the patches in the mail along with some charts to track progress. Calvin was so excited about it all that he wore his patch for 15 minutes right away and then hung his patch on the chart! He wanted to do it again so he did another 15 minutes and then hung his second patch up on the chart.

While he was patching we played a couple of games to pass the time. Lexey was so proud of him and gave him hugs and cheered him on. Clare was also involved in helping encourage Calvin (she is always a great cheerleader!)  Calvin was proud of himself too.

Day 2 was crazy. Calvin came home and put on the patch and looked around realizing that he couldn't see much with it on. (I guess the adrenaline high of the first day diminished his concern for this problem). He took the patch off and threw it down and took out his contact and tore it up. AHHH Since I think of life in $$$ sometimes this really freaks me out. bye bye $40 in 30 seconds flat. Calvin never escalated into full fit but had a very terrible day. I think a lot of it came from him being upset with himself for not being able to do what he hoped he would do.

The next day he had a rough day again, though not as severe.  Dave and I talked about it and wondered if we should give up. Calvin has made such good progress with his behavior lately it was getting scary to see him starting to really fall apart.

By day 4 Calvin was back in action and ready to do his best. Bless his heart. He wore his patch in the car for 15 minutes on our way to gymnastics and then again for 15 minutes on the way home to make up for one of the days that he missed.

He has done well the rest of this week.

There is such a difference this time around in working with him. Rather than telling him he has to wear the patch I leave it up to him to do it and work toward his goal. I am not sure a 3 year old could have really understood or been able to reason out the importance of patching so who knows if we could have done it another way when we patched all those years before.

I am proud of Calvin for his effort. He is doing his best.

patching again

We returned to the eye doctor to discuss Calvin's MRI results (which were clear as we already had heard) and to complete the eye exam. Instead of doing the eye exam the dr took the opportunity to tell me how important patching is,  how Calvin's eye is getting worse and how if we don't patch we will move into the realm of surgical treatment soon.

Patching is terrible!  We had about 5 years of patching in our past and I thought we were done when about a year ago Dr. OHalloran told us we could stop patching.

Here's a blast from the past about patching:

http://www.goodnewsdenise.blogspot.com/2008/05/doctors-orders.html

When Calvin wears his patch over his good eye his vision will be very poor. I had him cover his eye a couple of days ago and even standing about 3 feet from our 42in TV he could not read the words on the TV and it was blurry for him. He will be very uncomfortable with a patch on.

We are working really hard to Calvin's behavior right now and adding a patch will make him more irritable and uncomfortable and getting him to wear the patch will be struggle if at all possible.

I am thankful to have Lauren our behavior therapist in my court. I talked to her about this dilemma and she helped us set up a plan for patching. She recommended that we start with a very small amount of time wearing the patch. For the first week Calvin will wear the patch 15 minutes day and then we will move up to 30 minutes/day and over a course of time we will eventually work up to 3-4 hours a day which would be wonderful.

I let Calvin order some patches and a few patching charts from ortopod.com and we will start as soon as they arrive.  We are moving at a slow pace but hopefully not rushing or forcing will help us to be successful in the long run without so much contention and fighting.

It is neat to work with Lauren and see how a careful plan is so important. I have always attacked things with energy, gusto and force but I see that if I direct some of that energy to planning and organizing and BEING PATIENT I can be more successful.  I wish I could have known what I know about 10 years ago. I feel like my learning curve is behind my kids' needs! I guess that's part of how life's experience is. It wouldn't be called learning by experience if you could learn it without the experience!

this month

- started working with behavior therapist/parent coach -  first thing we are working on is the morning routine. It is a short and succinct time. 6:30-7:20 eat breakfast, get dressed, take pills, put in contact, get shoes on and get on the bus. Sounds simple enough but it is a struggle many days.

- eye dr. appt with complete exam, eye drops included. More than likely a miserable day.

- OT evaluation at a private group very close by. We had an OT evaluation at Rady children's over a year ago and it didn't go very well so we're trying again after prompting from the behavior therapist to be sure we're getting what we need in that area.

- IEP meeting. We requested a triannal IEP since we may be looking to move a year from now. . We will have new evals from OT, speech, psyco-educational, and academic of course. Normally these are only necessary every 3 years but I wanted all of these evals done this year so that everything will be complete and up to date if/when we are looking for a new school a year from now (all depending on the match in Dec)

2 great days

We've had 2 great days in a row with our boy and before that a few "pretty good" days. It is heaven.

(nothing significant has changed - just wanted to make note of some good news)

this week's news and more temporal lobe epilepsy information

Well, the official MRI results are in and there was no finding on the MRI which is good news.  We had our visit with the neurologist today to discuss our current problem which is Calvin's behavior. Even though he is seizure free, he is still completely out of control emotionally. Since he has epilepsy in his temporal and frontal lobes his behavior/mood are directly related to his epilepsy. We went to the dr. to discuss our current situation and what course of treatment he'd recommend. At this point it is not possible for us to blindly walk into a psyciatrist's office looking for medicines and as epilepsy is our first disease we thought we should start there first.

Our dr says though some  will deny the relationship between emotional/behavior/mood problems being directly associated with epilepsy with temporal and frontal lobe epilepsy it is impossible to deny.  Before seeking psyciatric medications we want to be sure that the epilepsy is controlled.  To that end, we are increasing the dose of his current epileptic medication over a few weeks. Then, we will go in for a 48 hour EEG to see what kinds of epileptic activity we are still getting. Calvin's first EEG last summer had a lot of epileptic activity.  A seizure is an over active neuron pathway and seizures can happen without being seen from the outside. We only see a seizure if it involves movement of a body part we can see. With Calvin we suspect he is having sub- clinical seizures contributing to his wild behavior and mood swings.

Some reading on Temporal lobe epilepsy:

1. Partial Seizures (SPS) involve small areas of the temporal lobe such as the amygdala or the hippocampus. The term "simple" means that consciousness is not altered. In temporal lobe epilepsy SPS usually only cause sensations. These sensations may be mnestic such as déjà vu (a feeling of familiarity), jamais vu (a feeling of unfamiliarity), a specific single or set of memories, or amnesia. The sensations may be auditory such as a sound or tune, gustatory such as a taste, or olfactory such as a smell that is not physically present. Sensations can also be visual, involve feelings on the skin or in the internal organs. The latter feelings may seem to move over the body. Dysphoric or euphoric feelings, fear, anger, and other sensations can also occur during SPS. Often, it is hard for persons with SPS of TLE to describe the feeling. SPS are often called "auras" by lay persons who mistake them for a warning sign of a subsequent seizure. In fact, they are actual seizures in and of themselves. Persons experiencing only SPS may not recognize what they are or seek medical advice about them. SPS may or may not progress to the seizure types listed below.
2. Simple Partial Seziures
3. Complex Generalized Clonic Tonic Seizures

(calvin has had #'s 1 and 2. I underlined the part that he seems to have problems with. Possible sub clinical seizures or auras causing major rage.)

Personality

The effect of temporal lobe epilepsy on personality is a historical observation dating back to the 1800’s. Historical psychologists such as Sigmund Freud stated, “We know that epilepsy produces these remarkable changes in the personality."[1] Personality change in temporal lobe epilepsy is seen as a chronic syndrome. It is classified as a chronic syndrome when symptoms from a particular disorder persist for a minimum of 3 months. Personality and behavioral changes can be a result of the seizures from temporal lobe epilepsy. Norman Geschwind [2] suggested that a reason for this personality change could be the location in the brain where the syndrome takes place. Geschwind article stated, “It’s the location of the lesions producing temporal lobe epilepsy. These lesions are characteristically on the surface of the temporal lobe.[3]” Furthermore, “These lesions lie directly in structures with pathways into the parts of the brain that are involved in emotional behavior."[4]”Emotional behavior in this regards can be seen as actions that contributes to an individual’s personality who has temporal lobe epilepsy.

These quotes are from wikipedia but Dave and I have both done a lot of searching in the literature to read these papers and they are summarized well here.

The temporal lobe is home to the amygdala - the part of the brain considered to process emotions and espeically anger and agression. Also, present is the hippocampus which is also part of the lymbic system and involved with creating memories.    I recently finished a college course on the biology of human behavior and spent a lot of hours learning about the different parts of the brain. As I listened to the lectures I could see very clearly how Calivn's problems are very attributable to the part of the brain where his epilepsy and damage are located. It was very informative but sort of sad to hear.

Anyway, if the EEG shows a lot of active epilepsy still going on I assume the dr. will add a second medicine or increase his current medicine to help control the epilepsy. If not, we will assume the epilepsy is mostly controlled and look to another medication for help and probably consult with a neuropsychiatrist.  Apparently the is one really good on town but I believe we'll have to pay out of pocket to see him.

The EEG will be a Mon-Wed. Calvin will get to miss school and sit in the hospital for 3 days watching TV, playing video games and eating hospital food. He is actually super excited!  Of course the girls are way jealous!  Luckily Dave has some flexibility in his schedule so he can go with Calvin on this little adventure in May.

longest day ever

Today we went to the opthomologist to have Calvin's eyes exam for the year done. We could have gone to he optician who gives Calvin his contacts but our neurologist wanted us to see O'Halloran to check some concern he had with eye muscle movement.

The appointment did not go as I thought it would. It ended up being on of the most stressful days of my life and I was only expecting a typical eye exam.

First of all, Calvin's vision was checked and was found to be 20/50 in his right eye with the contact on and 20/20 in his left. He has lost one line of vision since his appointment a  year ago. The best his corrected vision has ever been is 20/40.  It is such a bummer after all those years of patching, drops and suffering to make backwards progress. Dr. O'Halloran wants us to start using eye drops again, once every 3 days to strengthen the rt eye. After the appointment when I told Calvin about the eye drops, when he heard it was the left eye he said, "but that is the eye I can see with." Poor sweetie has obviously forgotten what it is like to do drops. It is such torture to make his left eye blurry when it is his dominant eye. We will definitely not start those for a couple of weeks after a few other appts and spring break.

Anyway, then I asked O'Halloran to check the eye muscles. He noticed that there was a little weakness in the rt. eye movement on the periphery. Also, he noticed that Calvin has a droopy lower eye lid. All of these are consistent with a third nerve palsy and even though he has only dropped one line, a decrease in vision along with these other symptoms added to the concern.  Dr. O'Halloran asked to call Dave to explain what he saw (never a good sign) and told him that Calvin has pupil-sparing third nerve palsy and wanted to order a MRI to rule out any cause (such as tumor or bleed) within a day or two (also not a good sign).  He sent us home without doing the eye exam saying he would want to wait for the MRI before doing the exam (also not a good sign). 

Being married to a neurosurgeon has advantages and disadvantages. I know a little more than the average person about the types of patients the neurosurgeon sees and why he sees them. It is quite common for patients to present with a cranial nerve problem and find a tumor. I was sure we'd find a tumor. I cried all the way home from dropping of Calvin at school and had visions of surgery, chemo, and a funeral.  It was terrible.

We called to schedule the MRI and got a time for 8pm. It was an awake appt, meaning no sedative or general anaesthesia would be used. Calvin is either the most sweet or most difficult patient they see so it is never safe to assume a 30 minute brain MRI will be possible, but we decided to give it a shot since it was the same day and we could easily try again if it didn't work without wasting much time. We rented Wreck-it-Ralph for him to watch in the machine and moved ahead.  Dave told him about the appointment and how he would get to watch the movie with special goggles in the machine and he was super excited about it. The girls were super jealous which added to Calvin's excitement! :)

The MRI went well. Calvin was an angel. He even had to get in IV for the contrast and was totally fine with it. He got to watch the movie. Fortunately I had picked up a  new bey wheel toy for a dr. appt we have next week but was able to send it with him tonight to help him be motivated to be perfect. After the procedure he also got a happy meal from McDonalds.

The tech let Dave look at the images when the scan was done. There is no tumor.  The images look very similar, if not perfectly the same as the images from last summer.  Dave said there might be a blood vessel that is pressing against the 3rd nerve but it is hard to tell on the MRI. We will wait for the radiologist read. I am not perfectly unconcerned about it as I still worry about a problem with the vasculature.

Dave and Calvin got home at 10pm. Of course darling Clare was awake to greet them and ask about Calvin's new toy, treats and battle wounds! Calvin was in a great mood and I am proud of him for doing so well today.

As often happens, we have  a cluster of dr. appts this month. Two today, one tomorrow and one next week as well.  Now we also need to add another optho appt to get the eye exam done.  Dr's are funny when they tell you to schedule things in a week or two b/c they never have openings. I am guessing it will be in 2 months that we are finally able to see him. Though I'd bet $ that he'll call Dave with the MRI results as soon as he sees the radiologist. Darn HIPPA laws prevent Dave from looking up the records himself.

depressing and hopeful

Depressing
Today I finally sat down and organized all of our paperwork - IEPs and evaluations - that I've had in various files and floating around the house for the last couple of years.  I put everything in a 3 inch 3 ring binder with categories such as: evaluations/2011/2012/manifestation determination/report cards. It was heartbreaking to sit down and see it all in one place. We went from Kindergarten report card of delightful little person with almost all 4's (working above standard) to daily report cards with tallies for each swear word, hit, kick, burp, etc and academics that are falling off grade level.  It was so sad I was not even hungry for lunch when I was done. It took almost two hours and completely filled the notebook.  One thing I realized I am so thankful for with Calvin's new school is that they do NOT send home daily behavior reports. There is really no benefit in giving me a daily update on every little bad thing that happens. They do have to keep track so they can report if things are improving or not, but I don't see it every day. I get  a call if there is a restraint or something else I NEED to know, otherwise we just discuss things at our meetings to see where things need improvement.

Hopeful
A few weeks ago I was out walking the dog and stopped to talk to a girl (about my age) who was standing in her driveway with her little one year old baby. I stopped to say hi since she was living in a house I knew had recently sold and wanted to say hi and see where they came from and if they had other kids, etc. After about one minute of talking she mentioned that she is a therapist/coach for autistic families. I told her I had a special needs child with similar needs to autistic kids and asked if she would mind if I stopped by another time to ask her a few questions so that she could direct me to groups or individuals who could help me in my situation. At the time I saw her I had two kids and the dog and was in a hurry to get back to school to pick up Clare. Anyway, we met this week and she did give me some good ideas of some services she sees her clients use.  It was helpful talking to her to obtain this information. I was completely flabbergasted when she next offered to work with our family at the cost of our copay ($15/visit) until we are accepted with one of the other groups I am applying for. The wait list is months-year since most families use services long term. I am still shocked by this offer. Most of these types of professionals charge $60-$100/hour and that is why I have never found one I could use. I simply can't afford to pay someone what would be close to $10K/year.  The reason she is offering to work for so little is that when she had her baby she pulled her self out of the full time professional world only maintaining a couple of her long term clients. However, she loves her work and would love to help our family. Since we live down the street from her it is pretty convenient and ideal for her to drop in and help us out once a week. I am hopeful she will be able to help us, even if it is in some small way. She is the reason I was getting the binder together so that she can see our history and get to know us on paper before she starts coming over. I should have gotten a little more organized long ago but I didn't know how. It was her suggestion to get the binder and file by date and category.

Also, I am trying once again to get Calvin occupational therapy. Over a year ago when he was evaluated by the autism department and the behavioral and developmental pediatrician they both recommended we get him in OT. I took him to an evaluation but he was not cooperative and the insurance denied our claim so I gave up.  I am trying again with a new group (one used to autistic kids instead of one that works with injured kids -- huge difference) and also thanks to a few phone calls, I know better how to approach the insurance company so they'll pay for it.

Also, I found several sport teams that work with special needs kids, at least one for each major sport - baseball, basketball, soccer.  It is good to know these options are out there and I am sure over the years we will give them a try.