[aimee]

My daughter is 13 and weighs probably around 60 lbs. I posted on here a few months ago asking advice about period management. Since then she decided that she wanted to try the pill and she’s on Seasonale. She’s about a month in and doing ok. She’s a little queasy in the mornings and we’re not sure if the pill is what’s causing it. Hope you find something that works well for you!

[aimee]

Thanks for the responses so far! She has MDA camp in a few weeks and is scheduled to be on her period then. I’m scrambling wondering if there’s any way we can put it off… I was actually going to try the Seasonale for a month or two but when I went to pick it up the pharmacy was out of stock, and now it’s too late in her cycle to start. Her doctor also mentioned the Depo shot as an option, but I’m thinking that it’s probably too late into the month to do that as well. Plus from what I’m reading, it seems that the shot takes about a year to make your periods stop. Any experiences with that?

[aimee]

I just talked to a friend that said she has a birth control implant in her arm and she hasn’t had a period in years! ????????‍♀️

[aimee]

Can I hijack your thread and ask how to manage when you actually have a period?  I’ve been meaning to post about this!  My daughter with SMA is 11 and I think her period will be coming soon.  We’ve talked about it a lot, but I realized I’m completely unprepared for how to deal with bathroom trips, especially in public where we don’t have accomodations like we do at home.  She can sit unassisted but is too small to sit on an actual toilet seat by herself so going to the bathroom and public has already been tricky.  Any advice would be appreciated!  (Also, I’m on a progesterone-only pill right now and am still having a period ????)

[aimee]

As an SMA parent, I am feeling so discouraged too!  I was finally starting to feel better about things, especially seeing that kids seemed less likely to develop severe symptoms from covid.  Now the new variant is supposedly way worse on children? ???? I did go ahead and put my non-SMA son in school this year.  Although it opens us up to exposure, I really felt like his mental health (and mine) have suffered so much this past year, as I know has been the case for a lot of people. I have tried to weigh that into our decision making. I hope everyone stays healthy and is able to feel good about the decisions you all make for your own health needs!

[aimee]

Oh this is good!  My mother in law always keeps her house so cold and I have to adjust the thermostat in the middle of the night so I can sleep!  But when she stays at my house I usually tell her to adjust as needed so that she can sleep!

[aimee]

One HUNDRED percent.  Our guys are sooo nice when we see them, but so hard to get in touch with and get anything done.  My daughter got a new chair in December and we’re still waiting on the correct seat cushion to come in.  Ghosted is a great word for it.  I hate calling the central office and usually try to text or call our guy directly, but since he’s disappeared I guess I’m going to have to wait on hold for the office.  Hope you get everything straightened out soon!

[aimee]

Thanks so much everyone for the input!  We went to the conversion company today and after seeing/trying the manual ramp I feel much better.  I didn’t realize that it was built in regardless.  I was picturing something that I would have to take out of the van and unfold every time.  It all makes more sense now!

[aimee]

Hey!  I’m an SMA parent and I’ve wondered about taking my daughter to a chiropractor as well.  I haven’t so far because she has a lot of sensory issues and anxiety.  I would just say that if you decide to go, get some recommendations for a gentle chiropractor from people you know in your area.  They do adjustments on babies without having to pop and crack anything, so I’d think that someone who took time to understand your situation would be able to help you without doing anything that might endanger you.  I’ve heard that anyone who goes should avoid the neck adjustment where they twist because of the risk of stroke.  When I used to see one, I’d ask them to use their little clicky tool (I think it’s called an activator or something like that) on my neck instead of the twist.  Please keep us updated on how it goes!

[aimee]

Oh wow I just now saw these responses.  Thank you so much for the encouragement!

[aimee]

Following… I’ve been wondering about the same thing!

[aimee]

I have felt the same way about my daughter’s treatment!  She was scheduled for last week and I kept wishing her doctor would just tell me exactly what to do.  She’s doing the SRK-015 trial and had that scheduled last week as well so we decided to go ahead with that one and postpone the Spinraza.  Like you said, it’s hard when we don’t know when it will be “safe” to reschedule.

[aimee]

Just read the column! You put my thoughts into words perfectly! Interesting point about the movie adaptation, I hadn’t thought about it. Hopefully whoever is making it will be forward-thinking enough to portray Nesta Rose differently!

[aimee]

Thanks so much for your input! Hearing other individuals’ experiences with this is really helpful. I’m not opposed to birth control on any moral grounds and it doesn’t bother me that it’s contraceptive. I’ve taken it most of my life (started when I was young because of awful period cramps) and haven’t had many negative side effects. I have noticed though that when I’ve gone through times of not taking it, I feel better physically and more “myself”. I also have anxiety and depression and wonder sometimes if taking the pill contributes to that. Can I ask, what brand do you take? Has it stopped your cycles altogether?

[aimee]

Thank you for sharing your experience! I actually think it’s really cool that she’s starting to be old enough to make decisions like that. It takes a lot of pressure off me as a mom when I can just ask her things like “do you feel like wearing your AFOs?” Or “Do you need some ibuprofen?”. Making decisions is not my strong suit, especially when it comes to another person, so I love that she can make some of those decisions for herself now. I have definitely discussed the birth control option with her and told her that it’s something we can consider if her pain or flow are too much to handle.

[aimee]

She has some that she uses on lighter days (still with a pad or pantiliners). Thank you for the recommendation!

[aimee]

No!!  I will look those up!  Thanks!

[aimee]

Those are great ideas!  I hadn’t thought about Crocs.  I have some comfy Skechers myself and had been wondering if they’d be comfortable for her.

[aimee]

Thanks so much for the suggestions, Alyssa!

[aimee]

That is a great suggestion!  She recently started using a silk pillowcase to help keep her hair from getting cray cray when she sleeps and asked if she could get a whole sheet set in that material.  I can’t stand the way it feels ???? but it might be worth a try if it would help!  Thanks!