This topic contains 13 replies, has 6 voices, and was last updated by  DeAnn R 2 months ago.

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  • #17708
     Kevin Schaefer 
    Keymaster

    Hey everyone, hope you all had a great weekend.

    Here’s Alyssa’s latest column, in which she talks about the difficulties of gaining weight for her, and others with SMA: https://smanewstoday.com/2019/03/08/what-uphill-battle-gaining-weight-feels-like/?amp.

    I did struggle with this as a kid, mostly because I was a picky eater. As an adult, I eat pretty heavily, and am able to maintain a steady weight. However, I know others with SMA who struggle with this. I think Alyssa does a great job expressing these frustrations.

    Do any of you struggle with gaining weight? Do you have any tips?

  • #17713
     Halsey Blocher 
    Participant

    I had more of a problem with weight as a kid. I never weighed more than 50 pounds on a good day. It was usually closer to 45. By the time I was 14 my 3 year old brother weighed almost as much as me. I got a feeding tube when I was 13, which has helped substantially. I have a hard time eating large amounts, and many foods are difficult for me to chew or swallow, so most of my nutrition comes from my feeding tube.

    • #17736
       Kevin Schaefer 
      Keymaster

      Fortunately I’ve managed to avoid a feeding tube, but I know it’s essential for a lot of people with SMA. That’s good that yours has helped you.

      • #17748
         Halsey Blocher 
        Participant

        I was very opposed to it at first, but it has helped tremendously in maintaining a healthy weight, and getting all of my essential vitamins and nutrients. It’s turned out to be a blessing.

  • #17732
     Jennifer Lewis 
    Participant

    I definitely don’t have a problem with not gaining weight. In fact, I’m the opposite. It is SO difficult to not be overweight for me since I don’t walk, although I admittedly have stopped trying.

    • #17737
       Kevin Schaefer 
      Keymaster

      I can relate. A lot of my weight turns to body fat, and I’m admittedly not the healthiest eater. However, doing water therapy on a regular basis has helped me tremendously in this regard. I feel better just by getting in the pool every week and exercising.

  • #17764
     Michael Morale 
    Keymaster

    While I never really had a problem with my weight, I will say that since I have been on Spinraza for nearly 2 years, my diet has changed. My physical therapist put me on a high-protein diet when I started working out, and this is definitely helped with regards to my energy level and the way that I feel. I’m trying to consume more calories, but I’m trying to get good calories versus empty ones. I’ve never been a big sweet either, so desserts were never my problem.

    When I was in junior high, about a year before I had my surgery for scoliosis, I did gain a little bit too much weight, but the summer before my freshman year in high school, I did a lot of swimming and lost the weight. Since then, I pretty much maintained my weight, but I still have to be mindful about how much I eat and what I eat.

    • #17770
       Jennifer Lewis 
      Participant

      So, it is possible to get Spiranza when you’ve had a spinal fusion? I thought the bone around the spine after a fusion would make it impossible to get it.

      • #17771
         DeAnn R 
        Keymaster

        Yes, Jennifer.  You can absolutely get Spinraza despite having your spine fused.  A CT scan can help indicate if you have an opening to get the injection with a traditional lumbar puncture as Michael Morale does.  He gets his in fluoroscopy to help guide them to the spot.  I wasn’t so lucky with my “bulletproof” fusion so I get mine through the neural foramen with the transforaminal approach.  That’s where they go in from my side and access the spinal fluid through the natural opening created where your nerves branch out into your spine.  I get it in interventional radiology with CT guidance.  Some individuals, like Kevin Schaefer, get cervical injections where they go through the neck.  Others get ports surgically placed then just get the injection through the port.  Here’s a link to a forum topic that discusses this method  https://smanewstoday.com/forums/forums/topic/spinraza-delivery-methods/  Another method some have tried is having a laminectomy where they remove some of the bone to create a window.  The trouble I’ve heard with this method is that the bone grows back rather quickly.  It’s best to discuss all the options with your neurologist to see what’s best.

      • #17779
         Jennifer Lewis 
        Participant

        Thanks for the info! Have you noticed improvement since starting the injections?

      • #17792
         DeAnn R 
        Keymaster

        Jennifer, although my improvements haven’t been dramatic I have had slight gains in my arms. Overall I feel good. I’ll be getting my 8th injection next week.

  • #17788
     Krystal 
    Participant

    It is a struggle for my 15-month daughter to put on weight. About two weeks ago, she was in the 10th percentile in weight for her age. She just wouldn’t gain anything! She was getting longer, but not losing or gaining, and since my husband and I are trying to get her into an upcoming clinical trial in April, my daughter needed to gain weight (she has to be in the 3rd percentile or greater) or else she would be ineligible by the time the trial opened! She does seem picky, but we still try to give her new foods to try anyway, and the foods she does like happens to fit well with the diet she was placed on. Nothing fancy, just a typical diet for any “normal” baby that has difficulty gaining weight. Just recently we had a follow-up visit and it looks like she gained almost a full pound, so it looks like she’s doing well so far!

    • #17796
       DeAnn R 
      Keymaster

      That’s great to hear she’s gained a little Krystal. I always thought it would be better to be on the leaner side because it makes movement easier, but you never want to be on the extremes. Tips I’ve heard throughout the years are to eat several times throughout the day. Going too long between eating can actually can cause our bodies to use muscle as fuel instead of burning fat. Also it takes us more energy to break down animal fats and proteins. That’s why many SMA parents lean towards the AA diet. It uses more elemental foods easier for our systems to breakdown and absorb. My best advice though is to let her eat what she likes, and as it sounds like your doing introduce a variety to choose from.

  • #17793
     DeAnn R 
    Keymaster

    I’ve always been on the “chunky monkey” side of SMA. As a kid I accidentally gravitated towards foods that are easier for those of us with SMA to digest. Basically loved anything with carbs. I hated most dairy products which I’ve learned are difficult for our systems to process. Even though I was a meat eater I never ate huge portions of it. Again I learned it’s difficult to process taking more energy to do so. Of course I never figured this out till I had a feeding tube & was using a formula with way too much fat & protein giving me tummy troubles when my system didn’t want to absorb it properly.

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