Baker has added a few more specialists to his medical binder and doctor appointments to his calendar along with a diagnosis for infantile spasms.
Infantile spasms are certain types of seizures that appear in babies, usually showing up around 4-8 months of age. IS is rare (only 1,200 or so cases are diagnosed a year), hard to recognize and is a very serious condition. The longer it goes undiagnosed and untreated, the worse a child may do developmentally.
For someone like Baker, who is already delayed when it comes to gross motor skills and could potentially face his own struggles when it comes to learning and cognitive abilities, the thought of him having damaging seizures on top of everything else was (and is!) scary. He's also been through so much already in his short little life so to add another thing that's so major seems a tad unfair. I mean, can't the kid catch a break?!
But. Roll with the punches, remember?
The way we noticed or recognized Baker's infantile spasms was kind of by mistake. We weren't looking for anything until I saw a video in my Facebook timeline. It was the week before Memorial Day, and another mom in one of my Facebook groups had shared a video of a baby who had been diagnosed with infantile spasms; she was asking questions about IS and her own child, who also happened to have Down syndrome. I watched the clip (over and over and over again....) and kind of thought Baker was exhibiting some of the same movements, mainly the dropping of his head that he'd do every once in awhile. I showed Justin and he agreed that it looked similar.
I always figured it was due to his low tone and learning how to hold his head up but every so often, Baker's head would drop down for a second almost like he'd gotten tired of holding it up. It'd come down and then he'd bring it right back up. The same movement would happen 3 or 4 times in a row.
We watched him over the holiday weekend and then sent a text to my brother - he's a pediatrician - and asked if he'd had much experience with infantile spasms. I explained what we'd been seeing and sent him a video that I'd recorded of Baker. He didn't necessarily think IS but agreed we should keep an eye on him and said to definitely follow up with his pediatrician if we started noticing his arms and/or legs making peculiar movements along with his head.
That was June 4th and sure enough, on June 6th, I noticed for what I feel was the first time Baker's shoulders and arms jerking up towards his ears while his head dipped. I quickly laid him down on the couch and grabbed my phone to record it. Again, the same movements happened 3 or 4 times in a row.
Over the next week or so, I tried grabbing as many recordings as I could. I ran by our pediatrician's office one day to ask her some questions and show her the videos. She wasn't 100% convinced it was IS either but agreed it'd be a good idea to follow up with neurology so she made the referral.
The children's hospital called last Wednesday morning asking if we could come down for an EEG that afternoon. The nice gal gave me a heads up that they tend to admit you from there should they find anything abnormal. By this point, I was pretty sure they'd find something so we packed a little overnight bag juuuuuust in case.
Baker hated the EEG and all of the probes being glued to his head but by the end of the test, we were able to record some of the movements we'd been seeing at home. He was admitted and spent the next 18 hours hooked up to the darn thing.
We met with a whole group of doctors the next morning and the neurologist officially diagnosed him with infantile spasms. They couldn't tell us how long he'd been having the seizures or how quickly they were progressing but we're thankful everyone moved quickly to get him seen once we started having concerns.
Baker had a long day last Thursday consisting of lab draws, a chest x-ray, heart echo and MRI - all of which had to be completed before he could get the expensive medicine (and by expensive, I mean freaking outrageously hella-expensive...) he needed to treat the IS. The nurses taught us how to give injections and for the next four weeks, Baker will get daily shots to hopefully fend off the seizures. We hope they're gone at the end of this treatment but there is always a possibility he'll need other medication to help keep them at bay. As he grows, we'll have to continue to watch him as he's now at a higher risk for developing other seizure disorders.
He's been doing well since coming home from the hospital. The shots are zero fun but we're already noticing a significant decrease in the number of spasms we're noticing. I may go as far and say we haven't seen one in a couple of days... YAY! He's been irritable and really hungry but we're still getting some smiles out of him.
He gets a repeat EEG next Tuesday followed by an appointment with the pediatric neurologist, the hope there is that they see a significant change and the abnormal brain activity that was present before has "calmed down" a bit.
I want nothing more than for Baker to be healthy, we've been fortunate so far in the fact that he hasn't faced any major illnesses, but the kid has some pretty significant diagnoses/conditions under his belt.
He's a trooper, a fighter, a warrior.
All things we knew about him and it's something he just keeps proving over and over again each time an obstacle gets in his way. Everyone always says you're not given more than you can handle but I'd personally be ok if this was the last "thing" for a bit, you know? I'm sure other things will come up (they always do!) but for now, I want these spasms gone so he can get back on track and continue to grow and thrive developmentally. He's an amazing little boy and we love him so incredibly much.
We watched him over the holiday weekend and then sent a text to my brother - he's a pediatrician - and asked if he'd had much experience with infantile spasms. I explained what we'd been seeing and sent him a video that I'd recorded of Baker. He didn't necessarily think IS but agreed we should keep an eye on him and said to definitely follow up with his pediatrician if we started noticing his arms and/or legs making peculiar movements along with his head.
That was June 4th and sure enough, on June 6th, I noticed for what I feel was the first time Baker's shoulders and arms jerking up towards his ears while his head dipped. I quickly laid him down on the couch and grabbed my phone to record it. Again, the same movements happened 3 or 4 times in a row.
Over the next week or so, I tried grabbing as many recordings as I could. I ran by our pediatrician's office one day to ask her some questions and show her the videos. She wasn't 100% convinced it was IS either but agreed it'd be a good idea to follow up with neurology so she made the referral.
The children's hospital called last Wednesday morning asking if we could come down for an EEG that afternoon. The nice gal gave me a heads up that they tend to admit you from there should they find anything abnormal. By this point, I was pretty sure they'd find something so we packed a little overnight bag juuuuuust in case.
Baker hated the EEG and all of the probes being glued to his head but by the end of the test, we were able to record some of the movements we'd been seeing at home. He was admitted and spent the next 18 hours hooked up to the darn thing.
We met with a whole group of doctors the next morning and the neurologist officially diagnosed him with infantile spasms. They couldn't tell us how long he'd been having the seizures or how quickly they were progressing but we're thankful everyone moved quickly to get him seen once we started having concerns.
Baker had a long day last Thursday consisting of lab draws, a chest x-ray, heart echo and MRI - all of which had to be completed before he could get the expensive medicine (and by expensive, I mean freaking outrageously hella-expensive...) he needed to treat the IS. The nurses taught us how to give injections and for the next four weeks, Baker will get daily shots to hopefully fend off the seizures. We hope they're gone at the end of this treatment but there is always a possibility he'll need other medication to help keep them at bay. As he grows, we'll have to continue to watch him as he's now at a higher risk for developing other seizure disorders.
He's been doing well since coming home from the hospital. The shots are zero fun but we're already noticing a significant decrease in the number of spasms we're noticing. I may go as far and say we haven't seen one in a couple of days... YAY! He's been irritable and really hungry but we're still getting some smiles out of him.
He gets a repeat EEG next Tuesday followed by an appointment with the pediatric neurologist, the hope there is that they see a significant change and the abnormal brain activity that was present before has "calmed down" a bit.
I want nothing more than for Baker to be healthy, we've been fortunate so far in the fact that he hasn't faced any major illnesses, but the kid has some pretty significant diagnoses/conditions under his belt.
He's a trooper, a fighter, a warrior.
All things we knew about him and it's something he just keeps proving over and over again each time an obstacle gets in his way. Everyone always says you're not given more than you can handle but I'd personally be ok if this was the last "thing" for a bit, you know? I'm sure other things will come up (they always do!) but for now, I want these spasms gone so he can get back on track and continue to grow and thrive developmentally. He's an amazing little boy and we love him so incredibly much.
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