Health care is a basic human right, not a privilege. For some reason, we’ve allowed ourselves as Americans to be fooled into accepting that one must be blessed with “means” to actuate appropriate health care. As a nation we have failed to realize that our health care system is a barometer of our society’s value for human life.

-Me

Friday, August 22, 2008

Medication and Other Such Things

We are a medicated group.

Sandis recently started stimulant medication, only one short week ago.
I am on many medications including Lexapro, prenatal vitamins, Novolog, and Percocet as well as over the counter remedies like Metamucil, Colace, an occasional Woman’s Correctol, and Calcium Supplements.

Bob has his medication of choice, and Gracie? She gets the all-powerful Lantus.
These eleven lovely medicines help to maintain the health and well-being of my family.

I wonder what families like mine would do without access to the medicines we take?

For one, Gracie and I would be dead. So with that in mind, our family would be a two-person family consisting of Sandis and Bob. That effectively cuts the medications down to two: Sandis with his stimulant and Bob with his med-of-choice (respecting privacy here!)

Where would they be without their meds? Bob would be where he was before he started his new medication, and well, he wouldn’t have a wife to be none the happier about it (I’d be dead), so who is to say. And Sandis? Sandis would be struggling, just like he was before medication (and just like he does still, just differently with medication) and he wouldn’t have a mum to help him out. Fortunately he would have Bob.

What am I getting at? I’m not exactly certain. Perhaps I am feeling tied to medications lately. Sandis and I both take Class 2 Medications which means that if we want our prescription filled we need a paper prescription. This involves an extra trip to the doctor to pick said prescription up. This extra element certainly adds an errand or two to the routine, and it certainly can add to the feeling of being chained to the medications you take.

My switch to Percocet is relatively recent. I had been taking Ultram and Elavil for pain. The duo worked and managed my pain well without the addition of a narcotic. However, those medications aren’t recommended for use during pregnancy. Percocet is actually in the same class as Ultram, but after consulting with several doctors and finally my pharmacist, the general consensus is that I should settle on the medication that I can take the least of AND the medication for which there has been the most opportunity to see how babies are affected when it is taken during pregnancy. I initially switched from Ultram to Vicodin, but Vicodin was terribly ineffective in regards to treating my pain. It did work well at contributing to nausea and mood swings though! Thus the switch to Percocet ensued as safety questions and dosing preponderances were resolved. The pain relief is fabulous, and at only 1 pill per dose I really am not all that dopey. I do however struggle some with concentration.

It was an interesting experience deciding which medication to take while pregnant. My primary physician is definitely inclined to seek outside opinions, which I think is fabulous. I don’t necessarily want my doctor to be the most confident dude with a board certification but rather the D.O. that is going to take the time and utilize the resources he has (including professional colleagues!) to ensure that he is helping to coordinate the best care possible for me (his patient!) When all was said and done, my primary physician consulted with my endocrinologist, an obstetrician, a perinatologist, my interventionist pain physician, and my pharmacist about appropriate pain medication during pregnancy. Should you be disinclined to count, that is five consultations! My doctor called me at home, work, or on my cell phone after each consultation to discuss the other doctor’s opinion and reasoning behind it. The entire experience was grounding and helped me feel confident in our decision to try and make baby #3 (Bob’s baby #1) while managing my other conditions. I cannot sing the praises of my excellent primary physician enough!

I do have other conditions beyond my degenerative disc disease, however, that need to be managed during a pregnancy, most notably my type 1 diabetes. Any woman with type 1 diabetes who has been pregnant understands the sprint-like marathonian qualities of this particular (or rather peculiar?) set of circumstances. I have been instructed to test my blood sugar when I wake up, before I eat, 1 hour post-prandial (after I eat), and finally before bed. I will fax in my blood sugars every Monday and Thursday. This is actually considerably easier to do with my RealTime system (continuous glucometer.) I am shooting for the 100-120 range and under 180 1 hour post-prandial. It really isn’t safe for me to be under 100 because I can drop so quickly and don’t feel my lows. Since I have started trying to be in that tighter range I have been fairly successful, generally being 100-135 although the 1h pp is a difficult sugar to have under 180. I receive specific ranges when I see my endocrinologist on September 9th and at that point I will share them! The nurse didn’t share the typical ranges because they won’t apply to me.

My final condition that could affect pregnancy is gastro paresis. This condition has really done a butt-whooping on me this past year and I have finally taken some specific actions to address it. There are quite a few dietary changes I’ve made that significantly helped me to feel better while reining in unintended weight loss. I have unintentionally lost 35 lbs since last September. I initially thought it was a side effect of my back pain. Unintended weight loss is a very common side effect of gastro paresis. I was diagnosed last September (right around the time of my back surgery) but have not pursued further treatment until recently, putting it off for other more pressing matters. The fact that I could not stop losing weight was an eye-opener while working with my doctors. My lowest weight was 130. I am 5-6-1/2” so I was never underweight but it is good to get a handle on things while finding other ways to get the nutrients that my body isn’t getting from food. During a pregnancy I would need to eat six meals a day and continue to take my vitamins and calcium supplements. I also have Ensure on hand should I be having a particularly rough time with eating which will help replace calories I might not be able to consume otherwise.

Sandis, as mentioned earlier, began his stimulant medication this past Friday. He actually began taking Concerta, which is a long-acting Ritalin. The day that Sandis took this medication for the first time happened to be a day that Sandis was home for the day. I had taken the day off to prepare for a family trip to the family farm. The drive is about three hours, and we were planning on staying there Friday, Saturday, Sunday night and then leave first thing Monday morning. I had quite a bit of packing to do for a family four (and two diabetics, ack!) I wasn’t around Sandis all that much because of this, but he was at home with his PCA doing his own thing including chores. We had celebrated Sandis’s eighth birthday the day before (a few days early) and Sandis had gotten a desk (with 6 drawers!), a desk chair, and a skateboard. The addition of the desk to his bedroom had created a chaos in his room that is paralleled perhaps only by the Christmas morning after-present siege. Sandis’s chore that day was to clean his room and in turn organize the contents of his room. This is typically something that requires much redirection and involves many tears and tantrums. It tends to culminate in a room half organized with Bob or I completing the task while perfecting what Sandis did manage to complete. It is a painful ordeal for all involved. Imagine my surprise when I came home from running errands to find that Sandis had methodically cleaned and organized his room. He proudly showed off each drawer outlining its purpose. He had a car drawer. He had a music drawer. He had a pencil and pens and notebooks drawer. He had a video games drawer (of course!) Sandis had organized not only the six drawers in his desk but also nine additional drawers in smaller toy dressers, his book case, and the top of his dresser. I had no idea this boy had it in him.

His PCA told me that she kept expecting him to be “done” but that she just “went with it” while he was still willing to work on his room. I have heard comments that Sandis is more “socially aware” and more chatty on his medication. Sandis himself told me that he thinks the medication will be helpful for school because he won’t get as frustrated. I see a HUGE reduction in Sandis’s impulsivity. This may end up redefining how we approach services for Sandis.

Oftentimes children with autism spectrum disorders don’t respond typically to medications, especially stimulant medications. We took a bit of a gamble with this medication, but I am really glad we did.

We do still have a few issues to iron out though. Side effects such as reduced appetite and reduction in ability to sleep are things that we are dealing with. We have been trying to ensure that Sandis has a snack every two hours. He isn’t hungry that often as a rule with this medication but if he doesn’t eat he will get a stomach ache. Sandis does NOT like the stomach aches so we are trying to prevent them. He also hasn’t been sleeping well every night. I think we need to make sure he is taking the medication before 8 am. He isn’t getting to sleep until around 9:30 or 10pm. He isn’t overly crabby though, so while the sleep thing is a concern if he is feeling okay that is a good barometer for how acutely it is affecting him. This medication is very long acting, and we may need to switch to a medication that needs to be taken more often so we can get more dosing accuracy in the afternoon and affect initial sleeping less. We are rather new in this process, though, so I don’t have the answer to that yet. We did just increase from 27mg to 36 mg as the medication visibly loses effectiveness after about 8 hours.

Medication updates aside, do you ever feel tied to your medication?

1 comment:

Concerta Side Effects said...

My name is Irene Pak and i would like to show you my personal experience with Concerta.

I am 60 years old. I have been taking concerta for three days now. So far it is wonderful. I was previously on ritalin for 2 months, and felt like I was on rollercoaster. I would go from jittery to severly depressed and crying. After changing to concerta three days ago, I feel like myself again, only with much more energy focus and concentration. I am sure hoping this will continue. I am on 36mg.

I have experienced some of these side effects-
mild headache, dry mouth, some affect on sleep

I hope this information will be useful to others,
Irene Pak