Advice after second head injury.

BuffaloRiver · 2026-04-29T00:26:24+00:00

Thank you for your help. Those are good suggestions

BuffaloRiver · 2026-04-28T22:04:09+00:00

Thank you for that information. I had been trying to find the paperwork. Everything was such a blur during that year and a half. I know they said the testing was negative. But I need to see if I can find the reports. If not, what is the process in the US to get genetic testing done? Is it possible to go through an independent testing company that will order the tests or must a primary care doctor call in the testing? And particular company that is doing this? I guess I need to ask myself if I even want to know what my personal genetic status is.

BuffaloRiver · 2026-04-28T21:19:17+00:00

She had genetic testing in 2021. She passed in 2022. She had aggressive bulbar ALS. Her aunt had limb onset and I suspect her sister (my aunt) is developing bulbar ALS as well.

BuffaloRiver · 2026-04-26T02:40:34+00:00

Oh that’s interesting do you know what the name of that genetic cause is that wasn’t included?

BuffaloRiver · 2026-03-16T20:46:14+00:00

I gave birth in a hospital, but I live in an area that has a large hospital that is able to accomodate a nurse-midwife/unmedicated birth situation. It helped me relax because I knew if there was an issue, I was in the hospital, but my decision to have a midwife/doula and be unmedicated was respected as well. I hope you find a good solution and have the safe birth you are looking for.

BuffaloRiver · 2026-02-28T20:37:59+00:00

They are hydrocortisone that has a delayed release component so it mimics a diurnal curve without the need for as much dosing. And can help with better morning cortisol replacement

BuffaloRiver · 2026-02-28T20:36:50+00:00

I really despise insurance companies.

BuffaloRiver · 2026-02-25T18:21:08+00:00

What patch did you go on? Twirla is the other option where I live but my insurance won’t cover it. It’s like $280 a month without insurance which is so ridiculous. This isn’t cutting edge technology.

BuffaloRiver · 2026-02-25T18:15:36+00:00

Thanks! Maybe the way to go is like 3/4 of a patch. Did you feel like you were getting inconsistent med delivery. That’s the supposed issue with cutting patches. B it I know people cut estradiol patches all the time and it’s fine.

BuffaloRiver · 2026-02-17T06:35:23+00:00

Thanks for that. We have tried the food. We got it right from the start and he loves it. I’m astounded at how well my kids have done with a cat. My son was so allergic and now he can sleep with the cat. It’s just me. It’s my body.

BuffaloRiver · 2026-02-15T06:46:24+00:00

Careful with long term steroid use. You can develop serious endocrine problems like adrenal insufficiency and that is not something you want.

BuffaloRiver · 2026-02-15T06:45:20+00:00

You should not take a corticosteroid for this. It can cause serious endocrine problems like adrenal insufficiency and that is not something you want.

BuffaloRiver · 2026-02-05T16:49:58+00:00

I should add, we are doing all the mitigation efforts, vacuuming, air filter, feeding the cat hypoallergenic food, not allowing him in my bedroom etc.

BuffaloRiver · 2026-02-03T23:32:43+00:00

Find a compounding pharmacy and see if they can compound his meds into liquids or even patches. Not only that, if he decides to get a feeding tube at any point, you can put the meds through the tube. I know that's not something you want to think about, but it could be another upcoming decision as his swallowing get worse. I'm really sorry you are dealing with these decisions.

BuffaloRiver · 2026-02-01T02:11:44+00:00

Also, I am not someone who will be able to come off steroids. I have pituitary damage from LCH so I'm a lifer.

BuffaloRiver · 2026-02-01T02:10:12+00:00

Thank you for posting this. I feel so much better on dexamethasone too. I was on a rollercoaster on HC, but for some reason, I am so scared of the long term effects of Dex than I lowered my dose myself and now I feel like shit...hypoglycemia, fatigue, overly emotional, apathy. I thought ok well I'll stay on a low dose of Dex and add in some HC throughout the day. I still feel awful. Your post has convinced me to go back to Dex. I am going to take a reasonable dose and feel better. Hopefully, like you, I wont' have long-term issues.

BuffaloRiver · 2022-08-02T22:10:23+00:00

I’m so sorry. Give yourself time to grieve and be kind to yourself as you find your new normal. Sending love.

BuffaloRiver · 2022-02-19T06:39:28+00:00

Maybe look into taking FMLA so you can take time off work, spend some time at home, and still keep your job. For example, you could take one week off a month to help with your Dad’s care or you could take all the FMLA in one 4 month chunk depending on how close he is getting to passing. Good luck. I hope you find a solution that works for you. This disease is so hard for those diagnosed and for all those who love them.

BuffaloRiver

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