health


I’ve been in training for a half-marathon. Here’s the post I shared on my running blog…

Challenge.

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Like the title of this post, “Fried” pretty much sums things up lately…

Our laptop fried itself a couple of weeks ago. I was thankful to be able to utilize Christian’s iPad in the evenings to check email/Facebook, but it wouldn’t let me post here so I have all of these “semi-posts” floating around in my head! I’m glad to report that Brian found us an old-school refurbished laptop. It’s a bit slower than our old model. I’m sure the kids won’t appreciate that, but Brian and I will be able to get done what we need to get done. 🙂

Up until this week, I was feeling “fried” on a daily basis. By 3:30 in the afternoon, I was feeling emotionally, physically, mentally shot. Completely overwhelmed. Home, school, work, etc. was all just feeling like too much. I was frustrated with myself on so many levels — for not finding time during the week to run, because I really wanted to lace up my shoes and go, but it just wasn’t happening; for eating really poorly for the last month; for being SO tired ALL of the time; for not being on top of everyone’s schedules consistently; for hating my commute even though I love to drive; for having to figure out a new med schedule for Christian so that afternoons at school weren’t too much for him; for the bus scheduler for changing the routes/drivers/times and failing to give us notice about any of that; for feeling so down; for getting so sick; for forgetting things that I used to just be able to remember; for so many more things that I can’t explain and/or remember. All of these things just ate at me and left me with nothing. I felt “fried”. Essentially burnt to a crisp and worth nothing…

…but for whatever reason, it seemed as I turned the calendar to October on Monday I started not feeling quite so “fried.” I found time to run on the weekends and while I wish it was more I’ll be happy that I have THAT time to better my body and mind… My food choices are something that I have control over. I can’t go back and “uneat” food, but I can make better choices in the days to come. I will focus on that… As for being tired, I find it hard to combat that feeling, but I can choose to go to bed earlier. But no matter how much (or how little) sleep I get, I am sleeping much more soundly than I have in the last 8-1/2 years. That is amazing!… Everyone’s schedules are difficult to be on top of, but I’m trying – utilizing multiple calendars – depending on Brian to take care of more things – writing myself more daily lists of things to do and post-it notes. It will come as things become more routine and we’re starting to get there… While I still wish that my commute wasn’t quite so long (especially considering the amount of $$ that we have to spend on gas), I am starting to remember to enjoy the quiet, the “me” time, the beauty of the creation along the route, my music, my thoughts, my coffee. I am also trying to focus less on the stress I feel from getting from point A to point B to point C in X amount of time and just realize that I will get there as soon as I can. Focusing more on what I can control over things that I can’t… I was bummed that we had to make the decision to add an afternoon med to Christian’s. We prefer to use as little medication as possible, but it was SO necessary. After the first week of school, Christian’s afternoon started to go downhill quickly, by the end of the day his teachers were struggling to get him to do anything other than stim, script, and pace. There was immediate proof that this was the right decision, though, when on the very first afternoon on the meds he was able to participate with his class for the ENTIRE day. My heart smiled as that note came home. We want the best for Christian and right now, at THIS time, this IS the best for him… I was pretty miffed and disappointed with the whole bus chaos, especially with what happened last January and the promise that would never happen again. So I donned my Mama Bear growl and called the bus scheduler directly to complain. He lied to me (knowingly or not, I’m not really sure), but at least he’s aware of the situation now and hopefully will know not to let that happen again (or this Mama will have no qualms about picking up the phone to call and complain again) and take it to another level if necessary…

So, anyway, what I’m saying in a very round-about way is that I’m starting to find the peace in the daily things that I used to “fry” me. Understanding that God has put me where I am, at this moment, for (a) purpose(s), even if they are not (all) evident to me right now. When I trust that God will get me through these struggles/moments, when I remember that HE is my strength and in control of ALL things, then I find the peace that I need/crave.

Philippians 4:13 – I can do all things through CHRIST who strengths me. {scripture verse that I wear as a reminder on a daily basis}

OK, so last time I wrote (before our computer was out of commission) I mentioned that we were looking into getting Christian on a new med before the start of the school year.

It’s happening.

His morning Adderal has been switched out to Vyvanse. They are in the same class of drug and are both long-lasting. Thankfully the Vyvanse comes in a powder-capsule form, so I can open it up and let it melt into the butter on the top of Christian’s morning toast. It has been working wonderfully so far. 🙂 I am praying that the benefits will continue.

A nice side effect of the Vyvanse (as it was with the Adderal, too) is a decrease in appetite. That is a good thing since Christian’s other morning med (Risperidone) causes increased appetite/weight gain. The Vyvanse seems to be evening out the Risperidone in the appetite department. 🙂 The frig is no longer being raided all day, every day.

This puts my mind at peace a bit as the school year is closing in on us quickly. Christian is very ready to go back. I’m happy for him! 🙂

This post has been a long time in coming…

Back in April, after months of trying to find a specialist who would see us, Christian landed an appointment with a behavioral pediatrician. I held out high hopes for this appointment, especially since the doctor only agreed to meet with us after reading through the 60-some (double-sided) pages of reports that I had prepared and sent to her. I figured that she wouldn’t waste her time with us if she didn’t believe that she could offer us some assistance.

It was a long appointment. 2-hours. But it was good. I felt that Dr. C actually heard me without letting her mind jump six steps ahead and missing some of the key concerns/issues that we were having. And she had done her homework on Christian. She came in with a plan and had papers prepared to give to me explaining the benefits/side effects of each medication and why she was choosing them.

After leaving that appointment, I felt that we didn’t get to see all of those other doctors for a reason. We were meant to see Dr. C. This was the blessing amidst all of the frustration and disappointment.

So … you might be wondering what medication path we are now leading.

Before we had the appointment, Christian was taking risperidone in the morning and clonidine at night. To that Dr. C added Adderall in the morning with the hopes that eventually we could switch the morning risperidone to abilify (to minimize the weight gain that Christian was having). (She also gave Christian an ADHD diagnosis.)

This seemed to working, but the Adderal was wearing off in the early afternoon, so Dr. C added a low dose of methyphenidate (Ridalin) to an afternoon snack. This was supposed to help him make it through his afternoon slump until dinnertime.

Everything was working fine and dandy until Christian caught on to my sneakiness near the end of June. You see, he is unwilling to just take medications. They have to be hidden in food or drink. He started figuring out that the sprinkles on that donut/ice cream sandwich/cinnamon roll/whipped cream/etc. were more than just sprinkles and refused to eat them. RE FUSE ED. My creative juices were depleted and I stopped trying to force the Adderal for the summer. However, school is just around the corner now, so Dr. C and I will have to come up with something – either a new medication or a creative way to deliver it.

The choice to medicate is not an easy one. Or a simple one. It is not for everyone, nor is every medication that is tried.

Right now, I feel like Christian has a good ally in Dr. C. She is on his side. Part of the team.

Sigh. I’ve waited to post this (and actually wondered if I ever would) because it gets my emotions so raw. Let me start at the beginning…
Brian and I decided that it would be a good idea to put both kids in swimming lessons this spring. Liv has never taken “formal” lessons. Christian took “special needs” lessons last winter. Christian enjoyed the water, however, Brian and I were concerned that they didn’t focus enough on swimming skills vs. the-love-of-water. Christian has never had a problem with the latter. We really wanted him to learn some basic water survival skills.
About a month before the classes were set to start (and we were ready to register), I tried emailing the aquatics director to see if it was feasible for Christian to partake in “regular” lessons. I waited and waited. A week passed and I hadn’t heard from her, so I stopped into her office to talk with her directly.
She didn’t seem too concerned about anything that I wanted to tell her about Christian. She just asked (more than once) if Christian was OK without me in the water with him.
Well, yes, he is OK without me.
Her answer to me then was to enroll him in whatever class I wanted to. She didn’t seem to have time or attention to listen to any of my other concerns, so I left her office and signed him up for “regular” class at the same time as Olivia. Easier for me. Awesome.
…or so I thought…
I arrived with the kids on the first night of class. Both were excited and couldn’t wait to get into the water. When all of the children were divided into smaller groups, I could sense a rumble of concern about Christian from the instructors. They were nervous about him. One of them went and asked the aquatics director if she was “OK with him being here.” Her reply was, “If he’s OK without Mom in the pool, then I’m fine with him being here.”
I started to get nervous and anxious about my son being referred to as him. I was starting to get irked, but tried to stay calm and positive for Christian.
I backed out through the door and watched carefully. As I stood there I was horrified, crushed, and angry as one of the instructors (right in front of Christian), started tearing up and shaking. As I tried to read her lips, I could see that she was saying, “I can’t handle this! I don’t know how to teach him! I can’t do this!” She was panicking, shaking her hands, and looking at him like he was the plague! I wanted to run out there, grab Christian out of the water, and shield him from her reaction.
Eventually, the aquatic director came out and talked to the teary-eyed instructor, went and talked to one of the other lifeguards, and then headed my direction. Sigh.
Aquatic director walked right over to me, and in front of all of the other parents, started telling me that Christian could not be in these classes. She told me that he is not capable and that thankfully they were overstaffed on lifeguards that night so one of them could spend time with Christian for the rest of the allotted class time. She told me that I would have to enroll him in the “special needs” classes if I wanted him to continue lessons and that she supposed that she could “roll him over” into the special class that started in two days. She made this sound like she was doing me this huge favor. Sigh.
Had it not been such a long day by that point, I might have been more vocal with the aquatic director. However, as I watched my beautiful boy now happily splashing around with extra lifeguard, I just nodded and told her that I would like to continue the lessons and to go ahead and put my baby in the other class.
I’m sure that aquatic director said some more things to me, but I was done listening. I was too busy watching Christian and fighting back my own tears. I was lost in thought wondering whether Christian had heard and how much he understood about what the swim instructor had said about him at the beginning of the class.
As soon as aquatic director walked away, I could no longer hold myself together. I started bawling, uncontrollably, by that window, in front of the other parents. I tried to stop. I really did. But I just couldn’t. There were too many emotions washing over me all at once.  I donned as brave face as best as I could and attempted to pull myself back together by the end of the class.
Two days later, Christian started lessons in the special needs swim class again.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Three weeks passed and my emotions were not as raw as they had been. The kids are thriving in their swim classes. I made an appointment to talk to the CEO of the place where the kids were taking their classes. He agreed to meet with me the next day.
I recounted our story. He listened to my every word. He asked questioned and repeated me, just to make sure that he fully understood what I had said. He promised to use it as a “teaching moment” and asked that I let him know how the swimming class turned out in the end.
I was satisfied.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Swimming lessons have now come to a close.
Olivia did fantastically well and loved every minute of her class.
And Christian … well, Christian did great. He also had the most excellent of teachers, Mr. Tim. Mr. Tim was genuinely happy to see Christian every week. Mr. Tim was energetic, caring, and resourceful. He got Christian to try things that I wasn’t sure I would ever see him do – like putting his head underwater to grab a ring off of the bottom of the pool! I know! Awesome, right?!? Mr. Tim had him working on paddling with his arms. Once Christian could do that pretty well, Mr. Tim had Christian start working on his kick. Christian still may be a long way from swimming on his own, but he is now on his way thanks to the patience and understanding of Mr. Tim.
I wish that there were more Mr. Tim s in this world…

We have decided to have Christian participate in a study involving the effectiveness of vitamin D given to children with ASD who are vitamin D deficient. It is a closely monitored study, so we figured that it wouldn’t hurt Christian and would actually benefit him health-wise, especially considering that he doesn’t consume dairy products or get enough sunshine.

We have completed our end of the paperwork and Christian has had his labwork done (he was quite low on the d scale), so now we are waiting to hear back from the council so that we can get started. I’m pretty excited about this upcoming opportunity for Christian.

Here’s the initial email that got us started…

Vitamin D Council announces free clinic to treat vitamin D deficiency in children with autism

The Vitamin D Council is finally kicking its vitamin D clinic for children with autism into full swing this week. If you know of a child with autism, and the parents are willing to give adequate doses of vitamin D, the Vitamin D Council will help the parents with our new free vitamin D clinic for children with autism.

Studies show that many children with autism have low vitamin D levels and some parents have reported that some children appeared to show a treatment effect when vitamin D blood levels achieve high normal ranges. However, we do not promise any such treatment effect, only that an adequate dose of vitamin D will treat vitamin D deficiency. The entire goal of the clinic is to bring vitamin D levels up to the high normal range.

The clinic consists of free autism rating scales for parents and teachers, free vitamin D blood tests (up to $65.00 per test), free visits or phone calls with Dr. John Cannell, and, if needed, free vitamin D supplements.

I am curious to see where this takes us. 🙂

Medicating our children is something that my husband and I take with the greatest caution. Especially when we are looking at a medication that Christian or Olivia would be on long-term. We have only medicated after lengthily discussion and research.

Last November, we made the difficult decision to start Christian on Catapres, hoping to help him with attention and focus at school. We had some luck it. At least, at first. We tweaked the dosage and form of delivery, but the meds were making him unpredictably moody. We lost him to inconsolable bouts of tears that would last for a half-hour and the only thing we could do to help Christian was to quietly hold him while he cried it out. However, at a lower dose in the evenings, the Catapres was proving helpful as a fall-asleep aide. That still holds true. Every evening at dinner, I slip him his Catapres and he is willing to go to bed by 9pm. (On nights when he hasn’t received the meds, he is still (literally) bouncing off the walls at midnight.) This medication has become an important part of our daily routine.

We were asked to reconsider medication to help Christian with focus and attention at school again this year. This school year has been a great struggle for him, his teachers, and his assistants. We were cautious, especially knowing how many changes we were dealing with at the start of this school year, but each day that passed his reports coming home would sting my heart. Christian could not focus or attend to much of anything. He would hit and kick and spit. He was eloping (running away) from classrooms and the playground. He was having issues that we hadn’t heard about for two years. It was time to help him. To re-research medications that could possibly help him have positive days at school.

I was scared and Brian was hesitant, but since we are both former elementary school teachers, we tried to remind ourselves how tremendously important it was for our ADHD students to have their medications before they started school each day. Without their meds, the day was nearly impossible. Was this same thing true for Christian? By not medicating him, were we missing an important part of assisting him???

So, we prayed and researched and talked to other ASD parents. We came to the conclusion that we would try a new med with Christian. We knew which one we wanted to try. I emailed our doctor (so that she had the time to research the medication) and set up an appointment for the following week.

When Christian and I visited Dr. S, she was totally onboard. We chose the med, Risperidone, in liquid form. We would start Christian at a very low dose and slowly work our way up the dosing ladder. Christian only takes the Risperidone in the morning and continues to take the Catapres with his supper every evening. We also added a nasal spray (once in the morning and once at night) for the seasonal allergies that we thought he had been dealing with along with the new pet allergies that he seemed to be suffering from.

Our verdict — the nasal spray seems to be reducing congestion and also Christian’s need for constant head pressure. He was always seeking out things to forcibly push his forehead/nose onto or seeking out the adults around him to squeeze the sides of his head, bridge of his nose, forehead, etc. This is happening less and less. Wonderful! However, there is a weird side effect that we have noticed with Christian and this medication — lack of sleep when he has an evening dose. Yeah. With the evening dose, he is up for the day by 2am. This mama is too tired to do that daily or every other day. We have just figured out this strange connection and will no longer be giving the evening dose.

As for the Risperidone — it took a few days to figure out the best delivery. In the coveted root beer. Straight into the mouth. Sprayed onto his morning toast. Since the dose is SO small and I know it will not be left behind, I have decided on the last one. It’s working. (For now.) We started Christian at a super low dose and stayed on that for 5 days. It didn’t seem to be having much effect, so I bumped it up to the next dosage that our doctor thought that we should try. One day later, we had an AWESOME report come home about Christian’s day. The next day was great, too. And then yesterday was fantastic. (You can read about it here.) Today was divine. We are excited about the way this med has started. We pray that it will continue to be a benefit in Christian’s school life!

 

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