deann-r
Forum Replies Created
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Hey Mike! Any closer to those Spinraza injections? Just wondering how it was going.
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My dentist and Mom transfer me into the dentist chair and I HATE it. Gotta do what you gotta do though. At least I get by with a once a year dentist visit.
The Spinraza injection was easy peasy. That part only took 10-15 minutes. They actually tried using a smaller needle to cut down on headaches, but since they have a longer distance to go with the side approach it wouldn’t cooperate. I’ve never had a headache though, and still haven’t even when he went back to the larger needle. The one hour wait is also to cut down on headache rates. Headaches have occurred in 15% of their patients I guess. Not a high rate in my view, but it’s nice they’re doing what they can to bring those numbers down further, even if it means I have to be uncomfortable for an hour.
When do you go for your next injection? Have you had any headaches?
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Just curious how everything turned out for your baby girl. You’ve been in my thoughts.
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Nice to meet you Julia! Welcome to the forums. Your field of study sounds very interesting. Although I appreciate the arts I’m not very knowledgeable on the topic.
I think it’s great you’re still pretty mobile and are thinking of starting a family at some point. Several individuals with SMA have done just that. It’s not something I personally have experience with. As with everything in life I’m sure it has its challenges.
What I do have some experience with is Spinraza. My fifth dose is coming up. I describe it as hitting the pause button on SMA. As time goes on I hope the cost goes down and it becomes more readily available across the globe. Currently many countries are putting restrictions on who can receive it. Biogen, the pharmaceutical company, just put out a report indicating it is beneficial for older patients as well and not just for type 1, so that’s a step in the right direction.
Feel free to ask more questions. We love hearing from you. Have a good day (or night)!
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I know you’re asking for a parents perspective, and I’m hopeful you’ll hear from some, but I too have had my share of respiratory issues. Do you have a pulse ox? That can help determine if the cold is affecting her O2 levels and if she’s in distress. My mom always liked to err on the side of caution and bring me in although you risk exposure to more germs. I would rely on your mommy intuition.
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I love that you can pair other devices to it as well, like smart bulbs and smart sockets so you can control things like lights and lamps with your voice too. So cool. Speaking of cool, I’ve heard of using the smart socket & Alexa to turn on a fan! Possibilities are almost endless. I’m hooked on question of the day. Other favorites?
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Minnesota started screening infants on 3/5/2018. Progress!
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Good to know. Thanks.
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Loved this sketch. It just shows how far disability rights have come and how difficult it was to get here. In particular I thought it was fabulous that they used actors with disabilities to portray the characters. Unfortunately there’s still a log way to go. I just watched the Oscars where the underlying message was equality and diversity, yet I didn’t see the disabled community represented. Although I haven’t seen the film that won for Best Picture, I believe the lead actress plays a mute janitor. Maybe that was their futile attempt to be inclusive? Missed the mark as far as I’m concerned.
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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.
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I’ve heard Indiana will become the fourth state to adopt infant screening for SMA. Anyone know the other 3 states?
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I did a double take when I saw a sidewalk being poured leading to a ramp and they were pouring a step into the sidewalk! Hoping I was wrong or there was alternative access. People just don’t question plans I guess.
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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.
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I don’t think I would hassle with legal action, but it sure would be frustrating.
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Pooja, currently there are no ongoing trials for Spinraza as it is already approved. Your access to it really depends on the healthcare system in your country. Unfortunately many countries are limiting access to those who are type 1 infants. I would recommend contacting your doctor to start the discussion. In adults improvements have been slower, but still show promising results.
Personally I have only seen minor improvements in arm function. Progression has seemed to stop though. It’s difficult knowing there’s a treatment out there you haven’t been able to access, but continue holding on to hope.
Thanks for reaching out. Please don’t hesitate to ask more questions.
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I had a similar experience when my sister and I went to get tattoos. It amazes me that businesses don’t even give it a second thought. Ended up going elsewhere. What do you do when a business or restaurant isn’t accessible? It’s happened to me surprisingly often. Most often I don’t make an issue of it and go somewhere else, or patiently wait as the party I’m with checks it out. From their end most often a cost issue is cited. They feel bad, but not enough to change anything. From my perspective it saddens my heart and feels like silent discrimination. Might as well put a sign on the door, “Wheelchair users not welcome.” What do you think?
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I’m hoping over time it will be more readily available around the world.
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Keep us updated, and best of luck on your journey. Don’t hesitate to ask any questions!
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Dennis, I think it’s great that you’re checking into Spinraza. For me it’s been like hitting the pause button where SMA is concerned. Over time I think gains will come.
Have you met with a neurologist? If you were diagnosed back in the 70’s they may require an updated genetic test like I had to do. Easier to get insurance approval .
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Welcome Julie! This is the perfect place to start on the forums. I always find the genetics of SMA fascinating as it didn’t show up in my history except there were a couple of infant deaths that raise my suspicion. Glad to hear you’ve started Spinraza. Please if you get a chance share your experiences in the Spinraza section of the forum. I’m curious as to the side effects you’re referring to. Perhaps others have experienced them as well and could help with solutions, or at least would make others aware of what to possibly expect. Thanks!
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Thanks Kelly! I’m hoping the girls will make more appearances with me in the future. It’s interesting to get their perspective on these issues.
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I did see that. Fantastic. Maybe it’ll open doors for other countries to start or expand treatment.
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You should go grocery shopping before Dunkin Donuts. You’d fill your cart with lots of goodies if you go hungry!
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Very true, everyone is always nice. The warm blanket doesn’t hurt either. Lol.