I’m very sorry to hear that you had such horrible news.
As far as the issue of getting a second opinion, I do think it could be valuable to get a second opinion at an academic medical center with expertise in pediatric neurology if it is at all feasible. One of the advantages of that is that you could explore if there are any clinical trials which might hold some promise. Sometimes clinical trials are the best hope for a serious disorder where conventional treatments don’t have much to offer. An academic peds neurologist who has expertise in kids with spinal muscular atrophy would be the best person to advise you about if there are trials your child would be eligible for and potentially benefit from.
All the best to you and your family.
Oh, BearFlag, I am so sorry. I’d been following this thread since its benign beginning, as I remember you (well, your wife) being pregnant the same time I was. My son is older (7mos), but I was identifying with your comments and thinking of our own recent baby experiences. But, when I saw the changed thread title and read your update, I audibly gasped, enough that my husband looked up at me alarmed–“What??” When I explained and read your update, he understood.
I, too, am a teacher and will be going back to work in a few weeks, and would also have a very difficult time returning were I in your situation. There may be a few options for your wife–does she have catastrophic leave? Does she have many sick days accumulated? She might be able to use those. If not–if she, like me, burned through all her sick days during her maternity leave–there is always Family Medical Leave Act (FMLA) absence. It will entitle her to upaid time off work to care for an immediate family member without losing her job. It’s something to inquire about, at least. She can contact the district’s health benefits, payroll, and/or risk management offices to find out. Her union rep (if there is one) might know as well.
This is hellacious, and I am terribly sorry to hear this. You have our thoughts and prayers.
I hope you all have support in real life, and can use these boards to talk about it - there will always be people here willing to give you a metaphorical shoulder to cry on, or cheer with you in the better times. Don’t be afraid of letting it all out.
Fuck…this sucks. I’m really sorry for you and your family man. Ride the ride as long as you can and I wish you well. Jesus. I need to go hug my kids now.
I’m sorry to hear this news Bearflag. I also thought about clinical trials, if you can deal with it. It would help expand what’s known about SMA and possible future cures. Wishing you and your family peace and strength.
Do you object to prayers on your/your family’s behalf? If not, I will pray for you. If so, I will just send all the positive thoughts I can in your direction!
I saw the thread title and that I’d clicked it and wondered how come I didn’t recognize the title. Then I opened it.
How absolutely horrible. But yes, you should definitely seek out experts, even if you have to travel; having doctors who truly know what’s going on is vital, whatever happens next. Though I haven’t seen them for a few years, the last orthopedist I saw is at Johns Hopkins, and I live in Idaho now and am not sure there’s a doc closer than LA I would trust with me (long story, rare condition).
