One of the symptoms of Rett Syndrome is a difficulty breathing. Maggie hasn’t always had this problem, though recently she’s developed it. And it’s a hard one to watch. We just have to watch her struggle and gasp for air and there’s nothing we can really do about it, that we know of. It’s neurological – so her brain isn’t letting her do the things that are automatic to the rest of us. Have you ever tried to think about breathing? You end up struggling to breathe yourself. Maggie, it seems, is thinking about breathing, because it’s not coming automatically and that just makes it worse.
The only thing that we’ve found works, even if just to stop her from hyperventilating for a moment is to count slowly and deliberately. I sometimes tap her head to remind her to count as well, but that is just so I feel like I’m doing more for her. I’m not sure that fully helps.
I’m going to see if there’s an asthma inhaler that people have tried for this type of thing, though I suspect the answer is no. That may mean we’ll have to put her on an anti depressant or MAOI inhibitor, both of which have been recommended in the past. Giving those kinds of drugs to a little kid has always bothered me because there are risks of side effects both on the drug and when she inevitably comes off it. Plus, I’d been trying to wait – we feel so close to a positive development in the research, but I’m afraid we need to come up with a solution for this breathing issue before that.
I’d love to wait for a drug that addresses all of Rett instead of just the symptoms. I’d love to avoid the slippery slope that I’m afraid will lead to a cocktail of medications for her. Without her being able to tell us how the medication makes her feel, there’s no way of knowing if it’s working, or if it’s hurting her. I’m just not sure I can hold my breath any longer.