How was the move for Calvin?

I've had several sweet emails or phone calls with people asking how Calvin is doing for the move.  First, thanks for asking. Second, thanks for acknowledging the fact that it is hard to move a child like Calvin!   So hard, in fact, I almost didn't move. But I'm glad I did.  Thanks to those who kicked me in the right direction.

Leading up to the move: surprisingly no complaints or very few. Calvin did mention one day, I think his last day of school, that his friend was so sad when he learned Calvin was moving that he had to put his head on the desk and take a time out. So cute, love how these sweet kids try to learn coping skills at school.

The move: Calvin did fine in the car. The car is actually a great place for him as long as the girls aren't bugging him. Calvin likes to sit around and play on his tablet so he is pretty content. The fact that we eat tons of fast food is also good for him.  He liked white sands. Took the elevator down to the caverns instead of hiking in.  He enjoyed swimming in the hotel pool. Overall, he did fine.

New home: Calvin did okay in our new house. The first couple of weeks were quite stressful for me going to meetings trying to get him registered for school, get a new dr and getting medications set up here.  The prescriptions I arrived with were not accepted here as an out of state prescription cannot be filled for certain medicines. So, we rushed to find a new dr. with an apt ...sat in the dr office with 4 kids for 3 hours....went to 5 pharmacies and called 10 more trying to get the prescription filled. I was ready to drive back to CA.  Then after a couple of days, Calvin dumped the entire bottle of dextroamphetiamine in water and ruined them.  It was a rough few days after that before we got new pills.

So far, Calvin has written 4 bad words on the walls. H x2, A, F.

New school: Calvin's new school is fine. He has been happy to go to school every day and is in a good mood when he gets home. I don't think they're pushing him very hard academically but I can see some wisdom in getting him comfortable and happy there being the #1 priority. 

New Bus: Not as smooth...we miss our sweet bus aide Jeanneane who we had for 2  years and who Calvin asked if she could move in with us! He is on the bus 1hr 45 min in the morning which is way too long so I don't really blame him for not loving it.  I fully expect this will be a struggle all year. It was at home for a long time too.

New karate: signed him up and he went once and said he was too sweaty. never back again.

New piano teacher: Clare is taking from a man this year and Calvin really liked him so he asked to take from the same teacher.  We'll see how that goes.

Calvin knew - medication continued

- trileptal 750mg twice daily
- tenex 2mg at bedtime
- fluoxetine (Prozac) 15 mg  in the morning
- risperidone 1.5mg at bedtime
- vyvanse 40mg in the morning
- dextroamphetimine 7.5mg at 3pm

We held stead with Calvin's medications for several months, but we still were seeing lots of break through tantrums. Calvin started telling us that he needed more medicine. More of the "blue capsule" (vyvanse) because it wasn't strong enough. We also noticed that his worst behavior was in the afternoon. I thought that it was just because the afternoon is when I have all the 4 kids together so of course it's the most stressful for him. But, it also occurred to us that it might be that the medication from morning is wearing off by then.  We told Calvin he couldn't make excuses for hitting, breaking, tearing, etc. blaming medicine and had to make good choices himself, but he insisted that he needed to take another capsule when he got home from school. So we told him we'd ask the psychiatrist when we saw him next.


We reported to the psychiatrist that we were still having violent tantrums, many of them occurring in the afternoon (or even in the morning before meds were on board).  we also told him that Calvin expressed the desire to take more medication in the afternoon like the vyvanse he was taking in the morning.  The dr. said we could try a booster in the afternoon, a quick acting medicine similar to the slow release medicine in vyvanse. But he also thought we'd get more bang for our buck by increasing the rispridol.  

We tried both, one at at a time of course, actually increasing rispiradol first as the doctor suggested, but it was the addition of the booster pill that made the biggest difference. Dextroamphetamine, given daily at 3pm has been a game changer for us.  I thought it was neat that Calvin had identified which medication needed to be added. Not sure if it was a lucky guess or he is actually that in tune with how he feels. Either way we're happy for him.

Now, he is by no means cured, but it is good to have made a little progress from a year ago. If we hadn't Calvin would probably not be living with us anymore, as he would have been to aggressive, unsafe and harmful. As it is we have bought ourselves a little more time with him in our home, difficult as it may be I still feel it is nice to have the family together.


PS. It is common that the ADHD medications wear off by mid afternoon.  For most ADHD kids it's not a huge deal since by then they are home from school, but where it so significantly changes Calivn's behavior it is a big deal for him.

medication

It took us a long time to find a good brew of medication for Calvin. Over the last year or so we have played with different meds and dosages until now we feel like we're pretty stable on what we have. We haven't made any changes for several months.

Here's where we're at with meds.

- trileptal 750mg twice daily
- tenex 2mg at bedtime
- fluoxetine (Prozac) 15 mg  in the morning
- risperidone 1.5mg at bedtime
- vyvanse 40mg in the morning

In the morning he takes 4 and 2 1/2 pills and at night 5 and 2 1/2 pills.  It is 7 different prescriptions and it costs $100/month. Most are 10 each but one is a name brand without a generic substitute so it is $40.


We've been on Trileptal since Calvin's first seizure. The dose has increased a couple of times with his growth but he hasn't had any seizures so we are pretty steady at his current dose and won't make any changes unless he has another seizure in which case we'd increase the does a bit.
Side effects:   None that we see, but remember epilepsy is over activity of the brain, so the epilepsy meds SLOW down the brain.  I have a friend whose child was recently diagnosed with epilepsy and she refuses to put him on medication  because the epilepsy medication is "poison". While I completely disagree with her decision, it is true that the epilepsy drugs are not without harmful effects. The epilepsy itself is far more damaging though so we are EXTREMELY blessed that Calvin has not had more seizures, especially considering his definitive brain abnormality on the MRI.

We started tenex several years ago to help with sleep. Before this time Calvin hadn't slept through the night EVER. It was crazy. My wonderful developmental and behavioral pediatrician started him on this. It was life changing for me to get enough rest.  We could probably come off of this medicine with the start of risperidone which in and of itself would probably make him sleep but I haven't dared to try it now that we're in a kind of good place.
Side effects: tenex is actually a blood pressure medication, a vasodialater (relieving high blood pressure). So the main concern with this medicine is that we cannot start or stop it without tapering the medicine or Calvin is in danger of rebound hypertension. Not a huge deal but something to be aware of.

Fluoxetine was the first medication we tried after addressing sleep and epilepsy and started with a new psychiatrist just over a year ago. It is a mild medicine with few side effects and very safe. That is why we tried it first. It would be perfectly fine to be on this medicine for a life time (whereas some of the later medicines have more serious side effects).  We tried an entry dose and bumped up the dose a couple of times perhaps seeing minor changes in mood but nothing significant and also this did nothing to help the raging tantrums we were seeing. 

Risperadone is the drug we were dreading. A couple of years earlier with the behavioral pediatrician she had suggested this medicine but Dave was adamantly against it. So we circled around the issue and ended up having epilepsy start shortly after that and got side tracked with those tests and drugs, hoping that it would "fix" Calvin once the epilepsy was resolved.  Well, obviously that didn't happen so we knew we'd eventually come to this.  Risperadol is a potent antipsychotic medication used for all kinds of psychiatric disorders including bipolar and schizophrenia and given often to autistic kids with behavioral problems.
Side effects: weight gain, diabetes, excessive appetite, excessive sleep and some other more serious ones that are rare but permanent if they occur.


Many years ago we took Calvin to a psychiatrist who was not up to snuff and we tried a few medications, all of which failed for one or more reasons. One of them was a stimulant for ADHD which Calvin clearly has. The stimulant trial was disastrous so we had been hesitant to try something else in the same category. However, that left Calvin as an untreated ADHD individual so it was time to try one more time with the stimulant class.

This time we started on baby dose (an a different mediaction) just in case there was an an adverse reaction. I was opening up tablets and hiding little bits of medicine in drinks each day as we tittered the dose of Vyvanse.  After a couple of weeks we could tell there was no adverse reaction so we went ahead and tried a therapeutic dose of vyvanse. There was an immediate positive effect at home and at school. Calvin was asking for harder work and working longer without breaks at school. I also found him a little easier to live with at home. We were very pleased.

This seemed like a pretty good combination of meds and took us 6 or 8 months to come to these dosages and medicines.

to be continued....one more change in meds months later

memories

One day several months ago I took Calvin and Lexey out to the mall. Calvin wanted to wear his robe.  Several thoughts about this: #1. this is one of the LEAST embarrassing things he has done to me #2. it's not worth even creating an issue over something as unimportant as clothes #3. It is kind of strange at 11 years old that he doesn't  have any bit of the social appropriateness of these kinds of things.  #4. he's darling  #5. The gap widens between him and healthy kids which is hard to see

 

 

Poor thing gets terrible ingrown fingernails. They get really infected and I have to watch him closely. One of these days I'm sure he'll get a serious infection and need to go to the dr. for it.

 

 

sometimes I feel like a bad mom that I don't have calvin wearing glasses or contacts on a regular basis. Especially since we fought tooth and nail to save his vision by patching for all those years.  But I guess I do try. This year before school started I got Calvin new glasses. He had them for about two weeks before destroying them.  You can lead a horse to water but you can't make it drink. Sometimes we get so thirsty around here I forget that I had offered water. Another year without corrected vision. Next year we'll try again. Between now and then I'll try to remind myself not to feel guilty for this failure.

 

blessed are the merciful for they shall obtain mercy

Calvin breaks a lot of things. He rips up the girls homework, piano books and books. He dumps out entire containers of milk, cereal, bread, or whatever he can lay his hands on. He rips up library books, breaks CD's and DVD's.  He has broken his glasses, dan's glasses, Dave's phone, pictures on the wall, cut holes in sheets and clothes. I could go on and on….  We have trouble keeping up with everything that he destroys and it would be an understatement to say that it is a financial burden.   It is also very embarrassing to try to explain to others what is going on. I don't think it's possible to even comprehend even if we did explain.  This week Calvin took a box of ritz crackers and smashed them up into crumbs and threw them all over my car.

Anyway, for some reason today as I was taping up a cover to a CD we rented from the library I was thinking to myself, "hmmm, I wonder what kind reaction I'll get when I return this."  Of course I'm always fine with just buying a new one but I can't really buy just a cover.  I was reminded of an event a few months ago and teared up thinking of this sweet lady in Alberstons.

I stopped at the store to get Calvin a snack. I can't remember the circumstances, but there's a good chance there is a back story…there always is.   Calvin likes the lunchables with a sandwich, called Lunchable uploaded- comes with a bun, meat, cheese, chips, drink and a Hershey kiss.  They are about $4-5.  When we got to the car Calvin opened the bun and it broke. Well, that was enough to cause a complete breakdown.  I decided it would be less suffering to give up $5 more dollars and get a new one rather than deal with upset Calvin so I ran back in to get one more. The checkout lady remembered me and asked if something was wrong with the first one. I told her no, my son accidentally broke the bun and then had a huge fit….so we needed a new one. She told me just to take the new one and that I didn't need to buy it again. But I explained that it was his fault, not a problem with the product and she still offered to give it to me and send me on my way, saying something along the lines of hope the day goes better. I am not a good story teller, but this small act really touched me. Most people are very turned off by Calvin's behavior and react with disgust or fear. It was sweet of this woman to be so sweet about it and have a little extra kindness for both of us. and without pity.  

I hope I can be more charitable with my feelings and actions to my own kids and others around me.

Just looked back and see that I already posted this story...oh well. Now it's here twice.