Sunday, July 25, 2010

Getting Ready for the Week

We are running around making last minute preparations for this week. Early tomorrow morning I will drag the kids out of bed at about 5:15 (of course they may be up already)and drive my husband to the hospital. He is having a hip resurfacing procedure (similar to a replacement). This is his second procedure - he had the other hip done a couple of years ago. The recovery is rough. He will be able to walk but slowly and with crutches. It will be a while before he has full stability. Once recovered though he should be in better shape than he has been in years. He has been in tremendous pain for many years. Unfortunately, our financial issues have prevented him from being able to take the time to get this done. We aren't exactly in a great position right now but he can either do it now or wait until next summer when I am home again and able to care for him. It will be tough on all of us. Mark is not responsible for much of the child care but after the surgery he will not be able to do any for at least a month, probably longer.

On the sleep front, Sam just had two great nights. It may just be chance but I have a theory. I think the bottle of melatonin we had been using may have been defective. I switched to a new brand (same dose) and we got two nights of great sleep. I guess time will tell on that one. Now if only I could get Maya to sleep. She still wakes like a newborn most nights. I think some of it is behavioral - those months of continuing to nurse when my milk supply was so low led to lots of middle of the night feedings and she never dropped the habit. Also, I think she just gets hungry. There are days when she hardly eats anything and I think she wakes up feeling empty. I am trying to get her to eat more but she is stubborn.

With the medicine, things seem to be going well. The week we just finished was tough but Sam was ill with a fever ( I suspect roseola since he has a blotchy rash today). Since the fever went away, Sam has been very calm. He has been stimming less in the morning and he has been much better in the evenings. I took both kids to Trader Joe's yesterday. Maya rode in the cart and I held onto Sam's hand as we shopped. When I was checking out I wanted to help bag but I was afraid to let go of his hand. I gave it a shot and Sam just stood by the wall and waited for me. Had I tried this a little while ago Sam would have run off and pulled things off shelves. Again, this could just be a fluke and not the meds so time will tell on this one as well.

The next few weeks are going to be very interesting. Hopefully we will all make it through with our sanity.

Monday, July 19, 2010

My Chemical Romance

Hope is the most powerful drug.

Right before each new intervention I ride this wave of hope; it gets me every time. I think to myself, "Maybe this is it! Maybe this time he will start it understand me and to interact with the world in a productive way." THen, hours (or sometimes minutes) before we try whetever diet, supplement, therapy or medication I fall into total despair. I convince myself nothing will change- I am destined to be housebound with an unmanageable child. I will lose my job because no one will be able to watch him for that 5-30 minute gap between when his bus drops him off and I get home because he is too difficult for someone else to watch. Without my job we will all lose out health insurance. We will be hit with medical bills that stretch our already strapped financial situation and we will lose the house. . . you see where my mind goes. Perhaps this is a defense mechanism. It prevents too stark a contrast between reality and my expectations.

I went through this rise and fall of hope right before starting our current plan. After spending Saturday morning fully depressed as I gave Sam his first dose, I am now cautiously hopeful. Adderall seemed to calm Sam down for a few hours in the morning each day so far. His vocal stims were reduced, his hand flapping was down and he was less frantic to get outside and start stimming with his straws and the deck boards (usually he starts yelling "TIDE, TIDE, TIDE" at the top of his lungs about 15 minutes after he gets out of bed). The effects were brief - about 3-4 hours- but noticable. Later in each afternoon we noticed some slight differences as well. Sam seemed just a bit more interactive. We saw lots of deliberate and direct smiles. Also, Sam came in from outside all on his own a few times to ask for "gickle" (chase and tickle). He will ask for that sometimes in the house or if we are all out together but this was Sam leaving his stimmy activity and coming in to tell us something interactive he wanted to do. I hope now that Sam is up to the full (but still lowest) dose the effects might last longer. I know some kids take a half dose at noon to help them through the afternoon. Before we look into that I want to be sure these effects are real and not some placebo effect.

As for sleep, we have not made much progress. Ever since his 3mg of melatonin stopped doing the trick, he has been up most of every other night starting around 2am. He is wired and unable to settle back to sleep. He often crashes again around 5 or 5:30, just in time for Maya to wake up. I try to let him sleep for an hour or two before getting him up for school. The neurologist said we can give a higher dose of Risperdal at night, try clonidine or increase melatonin (or perhaps some combination of those options). I prefer to increase melatonin for now since it is the more natural option. We will see how that works.

Today, Sam is at school and I am very curious to see what feedback I get from his teacher. I hope I have not deluded myself into seeing something that is not there.

**Update** News from school was not good. Sam was aggitated and emotional. Was it the med? Monday blues? We will see.

Sunday, July 18, 2010

this weekend

Our first try with medication a few months ago included Trileptal (since his EEG suggested seizures and meds can trigger) and Risperdal (tiny dose). As I do with most interventions, I thought I saw something change but it didn't last. I don't feel those meds helped him. Sam's school disagreed and felt they saw something but I suspect it may just have been a touch of development.

I had two additional therapists come to the house and describe to me what they saw as Sam's biggest obstacles to learning. They both felt his EXTREME inability to focus and need to stim are the issues. We have done years of ABA and OT to address behavioral and sensory needs - we need somethign stronger. I used their feedback when I met with the neurologist and we made a new plan. We are trying Adderall (fraction of a dose for now). This med is for ADD/ADHD. SHe warned me that is may have the opposite effect on Sam since that seems to be the case with many autistic kids. He still takes the Risperdal at night to try to help with sleep issues (still no better - up most of last night). I suspect that we will take that one away soon since I don't think it is doing much. I know many other people who have had good luck with it but I don't see much - either it doesn't work for him or he needs a higher dose.

The medication is not in place of any of the other work we do. Sam will continue in his school and home programs - we just hope the medication helps him learn more effectively.

The first two days were interesting. Sam is starting on half of his prescribed dose. He WAS calmer for a few hours but it didn't last. By 11:30 he was wired again. He was up from 2 am until 5:30am. Same thing today- calm until midday. I am curious to see what happens when he gets the full dose.

So we continue.

Friday, July 16, 2010

The Neurologist

What I like about her:

-She can usually see us within a couple of weeks of our calling.
-She returns calls promptly.
-At each appointment she tries to give Sam as full an exam as he can tolerate.
-She watches him, tries to talk to him and asks me questions about his behavior.
-She doesn't rush us through the appointment.
-She doesn't push medication.
-At each change she asks about my comfort level with the medication.

What I don't like:

-There is often a significant wait for the appointment (I know it is because her style is not to rush people but Sam doesn't do well in waiting rooms).
-She is 1/2 hour away (which I realize is nothing to people in other parts of the country) so with the wait and the drive, an appointment takes up a chunk of the day.
-She doesn't speak to Sam like a therapist so she doesn't get much of a response. She writes A, B, and C on a piece of paper and asks Sam 3 times in rapid succession to show her which one is B. He stares off in the opposite direction and waves his arms. A therapist would write them on separate cards or pieces of paper and say simply "touch B" or "show me B". I know this shows a deficit in his skills but to her it looks like he has NO skills.
-SHE ALWAYS SAYS THE WRONG THING. It is just a lack of tact but it is frustrating. At one appointment a few months back, as we were leaving, she looked down at my daughter and said "she doesn't say much". The suggestion was there. Maybe you have another one. In truth, Maya talks non-stop in most situations. The exception is a doctor's office. This past appointment she told me Sam reminded me of another patient she has. I said "oh yeah?" expecting some kind of advice about something that helped the other child. Instead she continued to tell me this other child is 13, can't talk and won't even get off the bus to go to school. His parents have a lot of trouble with him. Really? Thanks. Way to give me something to look forward to.

We have a new plan. I will post about it once we get started. Cross your fingers, pray, send positive energy, and/or think positive thoughts on our behalf.

Monday, July 12, 2010

Rough Nights

Sam has had some rough nights over the past couple of weeks. I think he has built up a tolerance to the melatonin b/c he is waking at around 3am. He refuses to stay in his bed and he works himself up into a frenzy - jumping, running, stomping, flapping, and laughing. He crashes at around noon and sleeps a bit. I, of course, have consumed so much coffee by that point I can't nap myself.

I don't think medication is working for Sam. I always think I see something at the beginning of each new intervention but I think it is just because I am looking so hard I find things to hold on to. I am taking Sam back to the neurologist this week to see what the next step should be. I assume we will wean him off (shouldn't take long since he is on such low doses). I would like to try other options but she may tell me there are none. I know WANTING to medicate my child may sound funny but you have to realize that he cannot function in the world. His behaviors are not manageable. We have done countless hours of behavioral interventions with very little to show. He is still mostly non-verbal, pretty hyperactive and extremely impulisive/compulsive. I had a couple of therapists come look at him last week and they both agreed that there is more intellect in there than we can see but his stims and microsecond attention span make simply functioning impossible. They both felt that if there was any way to reduce his level of distraction, he would be able to do much more. I am not delusional - I don't think I have a little Einstein hiding in there but I do think he is capable of more. That is why I want to try more meds. My biggest fear is that he will still be like this when he is five feet or six feet tall. How could I possibly manage him? People tell me not to look too far into the future because things may change but his progress is sooooooooo slow and he is soooo tall that I don't think my fears are baseless.

I hope the neurologist has some options for us.

Friday, July 2, 2010

New Shoes

I don't know what is going on with Sam and his feet lately but whatever it is has made it necessary for me to by him lace up high top sneakers. A couple of weeks ago Sam began to obsess about wearing socks in the house. That was no big deal. He also began to compulsively remove his socks and shoes when was was outside. The problem? half of our backyard is mulch and he began to get splinters in his feet (which he refused to let be removed - and he can FIGHT). I tried a behavioral approach. He had to go and pick up his shoes and socks and go inside each time he took them off and he couldn't go back out until both socks and shoes (or sandals) were back on his feet. Literally a minute later they would be off again. Now you should know that we spend A LOT of time outside when the weather is nice. It is the only way I can stay sane. Sam is a disaster in the house. I found myself making Sam put shoes bakc on upwards of fifty times a day. Sometimes I would be busy with Maya and not catch it right away. He continued to get splinters. The frustrating (sad? puzzling?) thing was that he didn't like walking in bare feet. He would make a face and look like it was uncomfortable but the compulsion was too strong to resist. It is the same thing with his need to drop straws through the deck boards - he is happy to do it most of the time but every so often he gets upset and seems angry that he can't pull himself away from this self - stimulatory activity.
So today I changed strategy. I bought high top lace up sneakers (Target's Converse One Star Sneakers) and Sam can't get them off. If somehow he develops the attention span and the fine motor skills to untie double knotted high top sneakers then I will have to come up with a new plan. But I think we are safe for a while.