January 11, 2018 at 3:04 pm #10978
I would love to learn more from any adults with feeding tubes. When did you require one? What style is it? Do you do continuous feeds or bolus (I think)? Gravity or pump? Any tummy issues? Do you cheat with food? If so are you selective? Are you on Spinraza? Any improvements?
I’m 38 and got a feeding tube about 2 1/2 years ago after being hospitalized and they found contributing to my breathing issues was silent aspiration due to ineffective swallow muscles. Wasn’t on my radar, but it did explain the inexplicable rattle now & then.
Currently I do gravity feeds a couple times a day. I have a Mic-key tube now (long story). I do cheat on occasion but try to keep it with food I think breaks down easily. Would like to pursue Vital Stim to see if it would help in conjunction with Spinraza.
February 28, 2018 at 8:32 am #11271
I’m 36 and got one ~10 years ago, when I suddenly felt unable to swallow safely. I currently use a Mini-ONE balloon button, which has the same basic design as the Mic-key, but is more compact, flexible, and therefore comfortable–I highly recommend it. I use a pump, but at a 400 ml/hr rate, so it’s basically just a leisurely bolus, done 5 times a day. I find it to mimic the satiatity of a meal without being so fast as to cause stomach discomfort. After getting the tube, I haven’t eaten by mouth. I drank for a few years, but then that too felt overly risky.
On the plus side, I’ve had zero rattle and zero chest infections since getting the tube, though perhaps I’m overly paranoid about attempting any risky swallowing. I’ve recently tried partially transitioning to the “amino acid diet”, and found some minor benefits to digestion and strength. Also–and this may sound crazy–I’ve discovered that adding essential oil “flavorings” can improve the experience of tube feeding through the aroma alone, since much of “taste” is actually smell.
No Spinraza for me. I’m not eager to attempt the injections with my spinal fusion. Instead, I’m waiting to see how it actually affects adults, while hoping some of the other treatments get approved for oral or intravenous administration.
I’m glad to see this forum; it’d be nice to have a resource for adults with SMA.
February 28, 2018 at 11:13 am #11272
Thanks for your input. I’ve heard a lot about the AA diet, just have no clue about implementing it. Not sure if now that I’m on Spinraza if that would make a difference in diet recommendations. Currently I do a couple bolus feedings (hate that term) a couple times a day just gravity. Like you said, it’s really cut down on the rattle. I do cheat with real food although I try to make sure it’s food that breaks down really good.
I’ve never heard of the mini-ONE. My local clinic didn’t even know a Mic-key even existed. Needless to say I go elsewhere for those services. Does that one get changed out about ever 6 months too? I’m all for something that would be more comfortable.
When people ask if I taste anything I say burps taste like soggy wheaties. Thanks for the links. Might have to check into them.
Even though you’re not on Spinraza, I suggest checking out the Spinraza forums too. You can follow others progress, and even share why you’re holding off on the idea. The more opinions the merrier I think.
March 4, 2018 at 10:03 am #11285
AA diet: I’m still a little skeptical of it, and basically all I’ve done is reduce the percentage of calories from fat and protein, and added some elemental formula. But hey, I noticed some improvements, and who wants to mess with what works? I wouldn’t think Spinraza negates the theory of the AA diet, since Spinraza only targets the central nervous system and not other systems where SMA may affect metabolism.
“Feeding”: You don’t like to play vampire, add some red food coloring and an “O negative” label to the bag, and prepare to feed?
Mini-ONE: I know what you mean clueless clinics: the hospital I was at when I needed to get the G-tube didn’t even believe it could be installed without general anesthesia. Thankfully I found another hospital that considered it routine. I don’t remember how I stumbled across the Mini-ONE online. It is just like the Mic-key (the extension sets are even interchangeable), other than being a more streamlined shape and made out of a more flexible silicone (which I think they say can last longer but is still “recommended” to be replaced ~6 months).
Aromas: Strength varies; of the ones I’ve tried, I’d recommend blueberry or strawberry.
March 4, 2018 at 2:41 pm #11286Kevin SchaeferKeymaster
Great discussion! Thanks for your input DeAnn and David.
Fortunately, I haven’t had to deal with swallowing issues, so I just have a normal diet. However I know many people in the SMA community are on the Amino Acid Diet or other supplemental ones. I’m always fascinated to learn more about these.
Also David, I totally understand being skeptical of administering Spinraza via a spinal injection. I’ve had spinal fusion as well. However, I’ve been able to receive my treatments through neck injections, which have worked really well for me. If you have any questions about this process, feel free to let me know. I’m 24 years old with Type II. Thanks for joining the discussion.
March 5, 2018 at 10:18 am #11287
Lol David, I’ll have to consider trying the red food coloring at the next family function. I’m sure I’d get lots of confused looks, ha ha.
Another question for you if you don’t mind my asking. Do you prime the extension tube at all? I was never told to, or not to for that matter, but hate the thought of that much air going into my tummy.
March 7, 2018 at 2:29 am #11298
I too try to avoid adding extra air, so I always hold the extension tube under a running faucet to fill the tube with water (using a syringe would work too), then clamp & cap the tube, before connecting it to the button.
March 8, 2018 at 6:52 pm #11310
Good to know. Thanks.
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