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The importance of newborn screening for SMA

Rory and Carolyn met in seminary, fell in love, and got married. They decided to hold off on starting their own family while they settled into their first jobs in North Dakota. After a few years, they moved to Minnesota, where Rory accepted a job as a minister, and Carolyn enrolled in a hospital chaplain residency program. At the time, they did not know how important the decision to move would be for their future family. When they moved, neither North Dakota nor Minnesota had SMA on their newborn screening panel. It wasn’t until March 2018 that Minnesota adopted and implemented newborn screening for SMA, and then several months later, in 2018, Rory and Carolyn’s only son Edan was born.


This topic has 8 replies, 4 voices, and was last updated 1 year, 12 months ago by Ryan Berhar.

  • Author
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    • #14283
      Ryan Berhar
      Keymaster

      I wanted to recommend this stuff called Topricin pain relief cream. I was skeptical at first, but I can honestly say that it does help relieve my pain. I put it on my shoulder and back before bed. I also use Ibuprofen a good amount. What are some methods you’ve come up with for managing physical pain? I know this isn’t assistive technology or equipment, but I thought it was more applicable here than anywhere else.

    • #14285
      Kevin Schaefer
      Keymaster

      Glad that works for you. I get pressure sores occasionally, so it’s something I may look into eventually. Thanks for sharing.

    • #14305
      Adnan Hafizovic
      Participant

      I also sometimes use Ibuprofen,when I had some pains.

      • #14307
        Kevin Schaefer
        Keymaster

        Yeah it definitely helps. Fortunately I don’t experience physical pain regularly, but this and Advil usually work for me.

    • #14316
      Kelly Miller
      Participant

      I am curious if the cream you’re talking about, Ryan, works for muscle pain, or nerves, or bones. Which is the worst for you? I have a friend who has severe fibromyalgia, and she might be really happy to try that cream if it works on nerves.

      Looks like I’m on the other end of the spectrum from y’all regarding pain & the relief of it. I have chronic, extreme pain on a daily basis in my legs, hips, back. There are also various things that hurt periodically.

      For the chronic pain, I started in 2008 with Lyrica & Tramadol. I was on that combination for 4 years until I decided the side effects were too much. I was experiencing memory loss (forgetting words in the middle of sentences), drunken feelings (not altogether bad but could be embarrassing at times), & swelling in my face, neck, hands/arms, feet/legs (making me look like I was a normal weight instead of less than most). When the doctor took me off, he neglected to tell me to taper down on my doses, and I suffered extreme withdrawal symptoms for several days.

      In 2012, because I didn’t want those symptoms anymore, and because I was experiencing constant breakthrough pain, I decided to go to an official pain mgmt. Dr. in order to get serious relief. She gave me Hydrocodone at the 5/325 level first, then I was quickly moved up to 7/325 & finally 10/325 within a couple of months. I was taking that dose 5 times per day to keep the pain at bay. I continued with that level of care until around April of this year when I decided to go to palliative care because I was waking up with again excruciating symptoms. By the end of each day, I was in tears due to my legs & hips hurting beyond reason. Even staying in bed didn’t help alleviate any of it.

      In April 2018, when I switched from pain mgmt. to palliative care, I was ready to try anything – even a bullet to the head at this point! This Dr. quite obviously knew nothing about SMA, nor did she appear to research anything about it as we developed our relationship. She threw several medicines into the mix and I was constantly trying something that didn’t work, then detoxing from that and trying the next thing. I went through gabapentin, methadone (yes, you heard me), amitriptyline, & I don’t even remember what else. After about 6 weeks of this and my pain getting worse by the minute, I told her I was done. I went back on my hydrocodone and threw everything else in the trash. Funny, but she was removed from that practice about 2 weeks after I left her.

      By June, I wasn’t satisfied with going back to my hydrocodone, but I was agreeable to it because it was the only thing I knew of that had ever really touched the pain. For a brief time (maybe… 6 more weeks), it seemed to work a bit, and I wasn’t as desperate for a change. About the beginning of August, the pain started amping back up, and I started thinking about going back to the pain mgmt. doctor. Before I actually saw her, I put my head together with a couple of other SMAers who also had my type of disease and were experiencing the same horrible problems. One of them told me about extended-release Morphine. I was very skeptical in the beginning because whenever I received Morphine in the hospital, it didn’t hardly touch my pain, and I usually ended up asking for something stronger, like Dilaudid. She convinced me to at least talk to the Dr. about it to see what she thought. I did, and she said it was worth a try if nothing else. Anything else she could do would have made me so whacked out I wouldn’t be able to function in the everyday world.

      I have been on it since August 2 and I’m here to tell you, this is the best medicine EVER! It’s a small pill that I have to swallow twice a day. I take Hydrocodone 3 times a day in between daytime doses of the Morphine. This is the new combo I’m using, and it’s working spectacularly. While I know it wouldn’t be the answer for everyone, I can say I am so happy now because I can participate in the real world instead of breaking down into tears in my bed all the time. I truly do not have hardly any pain at all throughout the day, and at night, I’m sleeping completely all the way through with no waking up to have my husband shift me or rub my legs. The only drawback to it is the having to swallow it. Even before I had my feeding tube, I had a psychological barrier to swallowing pills. Ha ha, seriously, I couldn’t make them go down. Even the small Sudafed’s with slippery coatings would come right back up into my mouth. These are a little bigger than that, and they have more of a matte texture. I’ve had to experiment with different foods to eat in order to push the pill down my esophagus. I’ve discovered that Mounds Bars (yes, the yummy coconut covered in dark chocolate candies) are the best because the coconut attaches itself to the pill & carries it right on down to my stomach! So, I also get a treat with my medicine twice a day. I don’t have any side effects from it – no drowsiness, no swelling, no stomach upset, no nothing. First medicine I’ve ever had with 0 side effects.

      Sorry this is so long, but I thought it might help someone who is going through a trial & error time with their pain meds. There is hope for sure – don’t give up! You just have to keep trying to find the right thing for you.

      • #14319
        Ryan Berhar
        Keymaster

        I have musculoskeletal pain, particularly in my left shoulder, and I’ve found the cream to help with that. I don’t know if it helps nerve pain or not. I’d have to check the bottle, which I don’t have access to right now. I’ll let you know in the next 24 hours.

        • #14340
          Ryan Berhar
          Keymaster

          I checked, and it is supposed to relieve nerve pain.

    • #14341
      Kelly Miller
      Participant

      Thanks, Ryan! Is the cream prescription or over-the-counter?

      • #14342
        Ryan Berhar
        Keymaster

        Over the counter. You can just get it online. I hope it can help you and or your friend!

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