For some basic information about infantile spasms from at actual doctor, I would encourage you to check out this 25:00 video. It's a bit long, but it covers everything. The more awareness there is, the easier it will be to get babies diagnosed quickly. It wasn't easy for us to get the diagnosis for our little guy, and I learned that you really do have to advocate for your child. As a parent, you need to trust your gut and push a little bit, even if a doctor tells you she doesn't think it's seizures and you're fine to just keep your normal appointment with your family provider in two weeks. We weren't satisfied with that, so we called a couple of places and found a neurologist who would see us in two days. He watched five seconds of video I'd taken before giving the preliminary diagnosis, which was confirmed with an EEG that afternoon. But I had to push a little bit.
Here are some of the most common questions I've been asked with their answers:
Spasms? Seizures? Which is it? Because it doesn't look like a seizure to me!
Me either! In fact, when we were first trying to figure out what was going on, I called my insurance's 24 hour nurse line looking for help. One of the questions she asked was, "Does it look like a seizure?" Of course I answered no, because my picture of a seizure was eyes rolled to the back of his head and limbs thrashing. Her question got me thinking, so I did a google search for "seizure disorders in infants." It didn't take me long to find this video, which allowed me to self-diagnose. That is exactly what Baby D was doing.
What caused this?
We have no idea. Surprisingly, this is actually a good thing. I can tell you what did not cause it: vaccines or electricity from the baby monitor we used in his room. No joke. Someone told me once that it was the use of electricity in his bedroom, like from a baby monitor. His MRI was normal, which means there's nothing structurally wrong with his brain. Nothing definitive has come back in several rounds of genetic testing and there is no history of seizures that we know of on either side of the family. Babies with no known cause are typically less likely to develop another seizure disorder later in life. Unfortunately, that wasn't the case for our little dude, but what can I say? He likes to be a trailblazer!
What is the process like to get a diagnosis?
If you suspect your child may be having spasms, try to get it on video. I took the video to our first neurologist appointment, and, within seconds, he was able to give us the preliminary diagnosis. We got checked in to Children's Hospital that afternoon, and an EEG confirmed it. When a baby with IS gets an EEG, it shows a very distinct pattern called hypsarrythmia. I'm no doctor, but I can tell that it looks like a mess!
How is it treated?
There are a number of different options, and the one you try depends largely on what your doctor prefers. We started off by giving the baby an oral steroid, prednisone. It helped, but it didn't get rid of the spasms completely. The next thing we tried was a hormone injection: adrenocorticotropic hormone, or ACTH. Giving my baby shots twice a day for seven weeks really sucked, but he stopped having spasms and his brain began to develop again, so it was obviously worth it. Both of these are typically (I believe) used fairly short term. Another option is Sabril, which is often used for longer periods of time. With the two drugs we used for Baby D, there were additional side effects. They were immune suppressants, so he was on antibiotics as a precautionary measure. They elevated his heart rate, so he took medication for that. There was something about increased acidity in his stomach, so he was on something to combat that. Elevated glucose levels, increased weight gain, inability to sleep at night unless physically attached to mama, and general constant crabbiness were additional issues we had to combat with daily tests, constant nursing, and a combination of medications. Not going to lie. It sucked.
What about the ketogenic diet/CBD oil/massage therapy/this other thing I heard about in a TV special?
Yes, these can be valid suggestions in some cases. I have talked to my son's neurologists about keto and the use of CBD oil. Here's the deal:
The ketogenic diet can be used as an effective and natural treatment of seizures in some cases. It's simply another avenue that doctors try, particularly if conventional pharmaceutical medicines don't work. From what I understand, the keto diet takes several weeks to be effective, and the seizures often get worse before they improve. With infantile spasms, quick treatment is key. Baby D wasn't developing, and was even regressing, while he was having spasms. By stopping the spasms as quickly as possible, you are giving your child the best chance to resume normal development. I think I also read somewhere that keto is most effective if the spasms are caused by a certain chromosomal abnormality. I could be making that up, but since that wasn't the case for our little guy, I wrote it off.
CBD oil seems to be the big new thing right now. I'm not a doctor, but when I asked D's neurologist about it, he was adamantly opposed to giving it, FDA approved or not, to a young child whose brain is still developing. He said that it can lead to very serious mental health issues, such as schizophrenia and others later in life. The most recent article I read stated that it has been FDA approved for ages two and up. By age two, a child who formerly had infantile spasms will likely have a new diagnosis if they are still having seizures. Hence the use of the word "infantile". So CBD oil probably shouldn't be used to treat infantile spasms. But ask your doctor. Don't take it from a mom blogger!
So yes, there are a number of natural avenues that can be pursued in the treatment of IS. However, as I mentioned earlier and as the doctor in the video I shared above states, quick treatment and resolution of spasms is key. This is my kid's brain we're talking about. If keeping him on high dose steroids for two months gets rid of the issue, I'm going to try that before I eliminate key food groups and hope for improvement within 6-10 weeks. I appreciate your input and I'm sure your intentions are good, but his father and I, along with a team of very intelligent and highly trained doctors and nurses, have got this.
This seems pretty scary: what can I do to help?
Why thank you. Yes, it is indeed very scary! There are a couple things you can do to help someone who is dealing with an infantile spasms, or another scary medical diagnosis.
#1: Vaccinate. While D was on treatment for IS, he could not get vaccines because the medicine compromised his immune system. His neurologist still advises against it, because his brain is, as he described it, a delicate instrument that we're trying to get in tune. You want to make sure it's solid before you give vaccines, which can cause problems for someone with a seizure disorder. They can not cause a seizure disorder, but someone who already has a seizure disorder needs to be careful. We are depending on herd immunity to keep him safe. I know some people are scared of the negative hype around vaccines. I know you may think you have a good immune system, so even if you do get a preventable disease, you will be able to fight it off. However, if you happen to pass it along to my son somehow, you could be endangering his life. Please keep in mind, if you decide to pass on that flu shot or a tetanus booster, that it is not just your life that you are potentially endangering, but his, as well:
#2: Food. This is universal. Medication made him constantly crabby, which made it difficult for me to get to the grocery store or to prepare food when I was able to make it to the store. His compromised immune system (especially in the middle of winter when this whole ordeal started) made me nervous to leave the house. We were so fortunate to have people regularly checking in on us, picking up the gallon of milk, loaf of bread, or bunch of bananas for us, and even bringing us prepared meals. Friends. Our village stepped up. It made what could have been a true disaster for my mental health into a difficult time, but one we were able to get through. Because we were not afraid to lean on our village.
#3: Company (but only if you're healthy and vaccinated). This time in our lives was isolating, but a time we needed companionship more than ever. We were scared to go anywhere and risk exposing baby D to germs, but we were also experiencing cabin fever to the extremes. To the people who came over and sat and talked or helped make dinner or swept my floor while I nursed an inconsolable child: you are what got me through.
What's the prognosis?
The sooner is it controlled, generally, the better the prognosis. Some kids see a resolution to their spasms quickly and never have another problem. Some (like our baby D) develop a different seizure disorder later in life. Some have longer term struggles as a result of the spasms or treatment of them, such as learning disabilities or emotional and behavioral issues. It depends largely on the cause of the spasms and how quickly they are brought under control.
What's next?
We got D's spasms under control in February of 2018. Then he relapsed in May, we got them under control, and he relapsed again in October. When the ACTH failed to control his spasms by November, we got the news: the infantile spasms were developing into Lennox-Gastaut Syndrome. The bad news: this is a very rare and serious form of epilepsy that is extremely difficult to control. The good news: we have an amazing doctor and we caught this early, giving D the best chance at a normal(ish?) life. We're taking it a day at a time, rejoicing in every victory and refusing to dwell on the setbacks. I mean, there are occasional bouts of wallowing in self-pity, eating ice cream straight out of the carton, and binging Netflix, but the next day I go for a run, make a healthy smoothie, and look for another reason to be grateful. They're not hard to find.
Baby is is raising a mommy who is resilient and grateful.
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