Baby E. has infantile spasms/West Syndrome. This is one of those diagnoses where, after hearing it, every nurse or doctor who enters your hospital room will say, “I’m so sorry.” It’s like we’re being repeatedly Tenth-Doctored (instead of rickrolled. Weird). All my info is what i rememeber from doctors at Children’s Hospital in Denver, but any errors are my own. Here’s a brief rundown:
Basically there are a few different types of causes for this syndrome. It can be caused by something known (AKA “symptomatic”) as in Baby E.’s case, his in-utero stroke and PVL, something unknown (AKA cryptogenic), and I think there was another type of cause and I can’t remember what it was. I stopped after Baby E.’s case, to be honest. Anyway. Basically you’ll know your baby has this if they’re having spasms. The spasms are an external manifestation of the real problem — an irregular/bad brainwave called hypsarrhythmia. You can see that on an EEG. The spasms will eventually go away on their own, but other seizures will follow. All these seizures and spasms and waves conspire together to delay your baby’s development and continue to hurt their brain. I think.
- ACTH (brand name, Acthar) a big old steroid-like drug that is delivered through injections. Most commonly prescribed, depdning on cause, due to temporary nature of side effects. Has a decent success rate.
- Sabril (brand name, Sabril) a big old drug that I clearly need to research more. Delivered in oral liquid form. Best for cases caused by tuberous sclerosis. Can cause irrevocable peripheral vision damage.
- ……PREDNISOLONE (brand name, liquid version of Devil Pred) see ACTH info. If your kid is on ACTH, you probably won’t be doing prednisolone, because they’re similar therapies.
- Some other stuff/surgery/whatever
Baby E. is on ACTH. We’re still giving him the 2x daily shots, and in a few days we start the taper down. He has another EEG scheduled with a local pediatric neurologist. If he has a recurrence of spasms, we’ll call his Denver docs, who will likely prescribe another, higher-dose treatment session with ACTH. If that doesn’t work, we’ll move on to the Sabril. Some of the side effects you see on ACTH? Well, there’s a host of medical possibilities: high blood pressure, high blood sugar, stomach ulcers, swollen moon-face, heavy heavy immune system suppression. And of course, personality changes.
Let me just say it sucks to hold my 8-month down twice a day and poke a needle in his little thigh. It sucks to read the instructions from the drug company and your insurance company’s pharmacy admonishing you NOT TO WASTE THE REALLY EXPENSIVE MEDICATION BY ACCIDENTALLY FUCKING UP BECAUSE YOU ARE NOT TRAINED NURSES, PARENTS. It sucks that we can already see a weight gain in him, and a moon face on him, and he doesn’t smile as much or as easily anymore. I haven’t heard him laugh in days. He wakes up every night, every 1-2 hours. He cries a lot during the day. So do I. It’s times like these that I am very happy I do not have a public-facing job.
Outcomes for babies with this syndrome, even with early treatment, are not great. The terms we kept hearing were “severe-to-profound mental retardation” and “global developmental delays.” I’m still trying to get used to that. Our way forward is to work with Baby E., get set up even more thoroughly with the state EI people, and….wait. And. See.
So that’s a wall of text. I wouldn’t have the first idea how to TL;DR that or sum up in the style of Inigo Montoya, so I won’t. I’m giving myself some time, snuggling a lot with my baby, trying not to freak out too much, seeking many distractions, and thinking of ways to pester our doctors.
DIRECTIVES GOING FORWARD
While I don’t expect this blog to be solely about Baby E. and West Syndrome henceforth, it’ll probably dominate in the short term.
What I do not want: please do not send me links or info about miracles cures or magical bullshit vitamins or et cetera that are supposedly a cure for anything baby-brain or seizure related. Please assume that I am a reasonable, overanxious parent who has an internet connection, and a library degree. If it’s on the internet, I’ve probably seen it and vetted it.
Also, please do not send me that Welcome to Holland poem or that How Preemie Moms Are Chosen poem attributed to Erma Bombeck, or various takedowns of either. Please do not tell me about your father’s cousin’s sister’s brother’s former roommate who had something like this and is now 6’4″, neurotypical, and a Mensa member. I will fucking punch you through my computer screen. Just warning you. I am not writing a problem for you to solve. I’m venting about my grief, and my baby, and my grief and love for both. And I have had enough of the above from well-meaning family, whom I cannot punch in the face, through computer screens or otherwise.
HAVING SAID THAT. If you’re in a similar situation and you too are venting, I don’t mind getting links to your blogs/twitter accounts/other online hangouts. That is fine. That’s also why I’m venting online, in case other parents who are experiencing this want to read about my experience or my crappy information.
I’ve decided to avoid the good old FB for the time being. It’s tough to see so many happy healthy babies and toddlers. Nothing against you happy healthy baby parents, obviously. It’s just tough, to see what you’d love to have, over and over and over, in different ways and different parts of the country, and know that you’re the outlier, that your experience, though it will probably eventually have its own joys again, is the unlucky statistic everyone else avoided. It is incredibly lonesome, and FB doesn’t offer enough to offset that loneliness right now. I will probably get over this eventually. In the meantime I’m being a lot more productive. Ha! Ha! Ha!
What I want: feel free to send me lighthearted distractiony shit from the Internet. Also, feel free to ask me any questions about Baby E. and IS/WS that are not readily google-able.