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  • Covid is here, I think

    Posted by swadez on October 10, 2022 at 12:49 pm

    Posting this again as my last one was marked as spam and deleted. Does that happen often?

    So I have SMA type 2 and I’m 47. My 14 year old, since Friday, had cold like symptoms. Runny nose, slight cough and complete loss of taste and smell. Came from school and did a covid test at home and it’s come positive for her. Did mine and it’s negative. Did one more each and results were positive for her and negative for me.

    Did another test yesterday, and for her it’s now coming as negative. Did one more and it’s still negative. Mine is also negative. Only symptom she has now is loss of taste and smell.

    She is double vaccinated. I’m double vaccinated plus have had a booster earlier this year, just before spring.

    She has been with me all the time doing what all Children and families do. Eating together, watching TV, hugging each other, out shopping etc. We use the same cutlery but not at the same time. Always gets washed.

    No point in shutting her in her room and isolating. Because if she has Covid then she’s definitely given it to me because she’s been around me past few days before the positive test. Can’t upset her by keeping her away. I’m assuming that if she’s infected me she would have done it before her symptoms came on.

    Wanted to know if anyone with SMA on here – or family and friends – has had covid with or without the vaccinations and how was it.

    I’m a little worried because I’ve heard that it’s dangerous for people with my condition.

    I’ve generally been well in my life. Had the odd cold and flue – which I could not shrug off as quickly as others but never was admitted into hospital. Three years ago, few months before the first covid 19 infections – I came down with pneumonia and was in hospital for a week. On oxygen for most and helped daily to clear up the phlegm. They said if oxygen level was to reduce any further then they would put me on ventilator. That did not happen. I was discharged on Xmas eve 2019.

    I’m very worried that the Covid might get me and put me in same position as then and this time not getting out of it.

    So any help would be appreciated. Has anyone gone through this or has information on it.

    rochelle-johnson replied 1 year, 7 months ago 6 Members · 8 Replies
  • 8 Replies
  • tammy

    October 10, 2022 at 1:20 pm

    Just an fyi, if you are doing at home tests or any other rapid test.. they are not always accurate. PCR is the only way to know for sure. I have known many people personally, including myself, who have had not only false positives, but also false negatives. I never rely on them

    • swadez

      October 10, 2022 at 1:53 pm

      No is seeming to be doing PCR tests around here anymore.

      Anyway, Im still ok. Fingers crossed

    • rochelle-johnson

      October 14, 2022 at 7:20 am

      Just wanted to support those saying rapid tests are unreliable. Yesterday I tested negative at home and positive at the doctor’s office. This is my second time to have it in 2 months, which I understand is very rare. One fantastic tool available to anyone at high risk for severe illness is the monoclonal antibody infusion. I got this in September, and it cleared my symptoms in days and kept the condition from worsening. I’m headed to the hospital later today to get it again to fight this current bout. Definitely worth it. This stuff is so scary for those of us with already compromised respiratory systems!

  • micaela-macdougall

    October 10, 2022 at 2:36 pm

    For what it’s worth, I saw my neurologist and pulmonologist at Johns Hopkins last month, and talked to them about COVID.  They both said that there aren’t data from scientific studies, but anecdotally their patients with SMA and similar neuromuscular conditions who have caught COVID have had less severe outcomes than expected, as long as they are up to date on vaccinations.  That said, they still advised me to take precautions to avoid COVID – less severe doesn’t mean no risk.

    Also, I could be wrong, but my understanding is that it could still be beneficial for your daughter to isolate, or at least wear a mask around you.  Your risk of catching it from her increases the more virus you’ve been exposed to.  So even if you’ve already been exposed, adding in more exposures increases your likelihood of getting sick yourself.

  • alyssa-silva

    October 12, 2022 at 6:22 pm

    Hey Swadez. How are you feeling today? Sending you good thoughts.

    I haven’t had COVID, so I don’t have any valuable information for you. But, as Tammy mentioned, definitely get a PCR test because rapids are spotty.

    • swadez

      October 12, 2022 at 8:42 pm

      I’m doing pretty good. Not had any singing and it’s coming up to a week since daughter had the positive test.

      Only had some throat congestion this morning but it passed away within hours.

      Daughter has cough and no sense of taste or smell but doesn’t look like she’s got covid. Even if she had it then doesn’t seem to have infected me. Fingers crossed.

      • alyssa-silva

        October 13, 2022 at 9:32 am

        That’s great news!

  • deann-r

    October 13, 2022 at 10:21 am

    It’s such an unnerving feeling knowing Covid is so close. I had it before vaccines were available, so that was 2 years ago already. Thankfully it was mild. Glad to hear you’re evading it so far and your daughter is doing well.

    I’m aware there’s a medication you can get a prescription for if you come down with it. If I’m not mistaken you have to take it within 5 days of onset. I’ve heard mixed reviews so it’d be something to consult with your doctor about. Otherwise I think it’s important to follow your usual protocols if you start feeling punk.

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