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.
Rett Syndrome is not an individual sport. It’s a group sport. While each girl with Rett is different and Maggie’s team makeup may be different than others, without a cure, they will all require 24 hours a day support for the rest of their lives. And for that kind of support, a whole team is necessary.
When we were first diagnosed, doctors told us “If she doesn’t use it she will lose it”. If she doesn’t use her hands she will lose the ability to lose her hands. If she doesn’t walk she will lose the ability to walk. So we assembled a team that would help her fight.
In the spirit of the baseball playoffs – here’s her starting lineup. These are the people we see regularly to make sure Maggie’s health doesn’t decline. These are the people we depend on every week. When something is wrong, these are the people who help us problem solve. Only two of them had significant experience with Rett before they met us. Now, they are all experts.
Daniella – Physical Therapist – 2 hours/week
Uyen – Occupational Therapist – 2 hours/week
Deandra – Speech Therapist – 2 hours/week
Jeff – Neurologist – 2 days/year
Barbara/Melvin – Vision Therapist – 1 day/year
Susan – Communication expert – 2 days/year
David – Cardiologist – 1 day/year
Shelly – Caregiver – 3 days/week
Karen/Judith – Horse Therapist – 1 hour/week
Joanne/Heather and her Pre-K team – 5 days/week
Alyse – Swim Instructor/Behavioral Therapist – 1 day/week
Peter – Pediatrician – 1-5 times/year
Nancy – Orthotist – 2-3 times/year
Rob – Naturopath – 1 time/year
Kim, Tina, Lyn Dee and her IEP team – 2 times/year
It’s sad that any kid needs a pediatric neurologist. And sad when kids need pediatric cardiologists. Maggie needs both of those and a team of 13 more. Those are just two people on this one little girl’s team!
Look, I recognize this team is a little absurd in its magnitude. But each and every one of them is necessary. And if we stopped going to see one, we would see the negative impact quickly. In fact, there are still more interventions we’d like to do, but the time to do that simply does not exist.
So instead, we’ll cheer on the team. But we’re not cheering them on from the sidelines at all. We’re in the huddle, drawing up plays. After all, this is not an individual sport. It’s a group effort.
And now that includes each and every single one of you.
This is the email I sent to all of the team above the night that we got diagnosis, but I realize that you’re also part of her team, so I wanted to share it with you as well.
I know that we just got some brutal news about Maggie, and I wanted to write to say thank you for all the help and love you guys have shown her.
This isn’t easy. But it isn’t over. There are miracles that happen every day. We just have to be one of them. With your continued support, I believe we can be. Jenny put it best when she said “life can change in an instant. It’s what you do with that change”. And we’re going to do absolutely everything we possibly can with this change.