I never really recorded this whole seizure journey yet and since I had one too many cups o' joe today and am still awake at 1:00 am (which I am going to completely and totally regret at 6:00 when Cameran is up and at 'em) I may as well begin...
When we began PT (probably sometime in early March) the woman we were "assigned" came and did two initial consults, knowing we would be picking up full-time PT to get Cami movin and groovin on her development. On the second consult I had noticed that Cameran was "hiccuping", which often times resulted in what Ryan and I would call "head butts" to the person holding her. The PT looked at me strangely, and announced that these were most definitely not hiccups, as they were occuring in isolation and in erratic intervals. Basically she was the one who mentioned they might be "drop seizures" and to let the pediatrician know.
Luckily by this time her 12 month check up was right around the corner. For the next week or so we, along with daycare, attempted to chart where and when she would have these "episodes". Of course, when her appointment came along she did not have any head drops at the office. However, knowing how my anxiety gets with Cameran's medical needs, her pediatrician did not make us video tape them, and told us to immediately go to a pediatric neurologist.
Long story short, we went to the neurologist for a consultation on March 30th. For an hour we sat and discussed Cameran's espisodes with Dr. K. Naturally, Cameran played opposum and did not have any episodes at that appointment either. I came prepared though, and had recorded two that occured within a minute of each other while Cameran was in her high chair eating. She agreed that they looked like "infantile spasm seizures" and that we needed to get an EEG scheduled and medicines decided.
To anyone who may go through a similar situation with a child or loved one--DO NOT PRETEND YOU ARE DOCTOR GOOGLE--all that results is unneccesary worry and a lot of extraneous stress. We did this and read words like "catastrophic" and "mild to severe delays". Super. Our child already has delays from having T21, let's add a few more ailments. So again, do. not. google. diagnoses. EVER.
Because of our work schedules we did not begin with the most aggressive treatment (ACTHar steroid shots that we would need to stay home with her for increased infection/sickness risks), but instead opted for a broad spectrum seizure pill which many migraine sufferers know to also use called Topomax. We saw less spasms, but it did not rid them totally, so we increased the dosage. This seemed to help and they decreased still, but seriously, sprinkling 8 pills into a baby's food is no good, especially when it is not 100% working and the neurologist wanted to increase the dosage more. Her second EEG on May 3rd showed no seizure activity, but irregular brain patterns and we were still seeing an occasional seizure when she would wake up.
The good news came on May 17th when we saw Dr. K for Cameran's MRI results. The previous Friday Cami had to be put under (and they stuck my brave little girl three times before getting the IV in) to get an MRI to see if her brain was developing correctly and to possibly see if there were any areas that may have been the source of her infantile spasms. EVERYTHING CAME BACK NORMAL!!! What a relief! As far as we know this means that these seizures have not caused any further impairment, other than delaying her progress during the 6-7 months we thought she was "hiccuping". (What baby would want to try to push off the ground knowing every 2-3 minutes it is going to involuntarily flop forward??!!)
We made the decision to begin the paperwork for the ACTHar steroid shots at the end of May.
Finally, on Tuesday, June 8th after a few miscommunications from the home nursing agency and the neurologist we began injections. By that Friday I sucked it up and began administering them myself...Ya see, originally Ryan and I decided we were going to utilize as much homecare nursing as insurance would provide. Neither of us wanted to job our poor baby with a needle filled with syrupy goop. Then the nurse from hell came and that changed everything. The Reader's Digest version is she smelled like an ashtray, didnt wear gloves, didnt wash her hands, had long nasty yellow fingernails, didnt teach me diddley squat AND when she gave Cami the shot she lost her grip and let a 3/4 inch needle dangle from the top of my girl's thigh muscle. This Mama was not a happy camper. I hate conflict, but you better believe I called the next day to complain about that chick. Bonkers.
The subsequent nurses were great, and on Friday I was encouraged enough to just conquer my fear and learn how to administer the shot. (I mean, come on--I am a teacher, right? Shouldn't I be able to figure this out??)
Cameran slept almost non-stop the first few days she was on the shots. She still was/is receiving her 8 Topomax pills as well. She was grumpy when she was awake, and still had a few seizures limited to when she was waking up.
By the end of the weekend though, she was back to herself. She even began showing more interest in her toys, and began pushing herself up like a champ. She sat up for insanely long periods of time, and even removed stacking stars from the pyramid-like toy! We think she says "Hi" when you say it first, although it sounds more like "Ha-ah" In any case, she is doing amazing new things. And her eye contact---what was once almost non-existent is now frequent and purposeful. And she smiles--can't actually capture any good ones, but she smiles. A LOT. Did I mention she eats like a horse and doesn't sleep??? Like really really doesn't sleep. As in she doesn't nap kind of doesn't sleep....sigh...for the good of the cause ;)
Two weeks after beginning the shots (June 22) we went back for another EEG. Let's just say little miss insomniac did not cooperate at all and did not sleep. She screamed through the application of electrodes, alternating between "Nanananananana" and "Mamamamamamamama". Dr. K did her best to interpret what was recorded. It did not show any seizure activity while she was awake or during the strobe light portion. As a result, we are now up to date with Cameran's treatment. Because we are reporting not seeing any seizures at home and her EEG, although awake, did not show any seizures, we are tapering the shots to every other day. This began yesterday. So Cami, enjoy tomorrow because you get a day off!!!
We are praying and wishing and hoping that they stay away for good. There are two options left before others need to be thought of. One is an annoying dietary program (ketogenic) which I am sure works, but seems like it would taste like poo, and I hate cooking. (Don't worry---if we need to we will...) The other is a medicine just recently approved in the USA. It's a wonder, though, seeing as there is an almost 30% risk of peripheral blindness!!!!
So keep us in your prayers and thoughts, and hopefully I get to stop