Another bump in the road

Those weird movements we had been noticing more and more frequently were suspected seizures.  It happens so quickly…each seizure lasts about 1 second.  All of a sudden his head will drop really quickly and his arms go up at the same time.  At the beginning of October is was happening maybe 1-2 times each day.  By the end of October they were happening in clusters of 10-20 seizures a few times each day.

I was able to get a cluster of the seizures (about 10 seizures in 2 minutes) on video and e-mailed it to the paediatrician.  She was in contact with the neurologist and sent him the videos as well.  The following Tuesday, the neurologist called to ask us to come in right away.  After a long and drawn out assessment of Ryder's symptoms and the videos, they told me that he was having something called "infantile spasms" (IS) which are incredibly serious (much more serious than head drop seizures).  He was started immediately on a seizure medication and an EEG was scheduled for the next day.  

Ryder during his EEG

Infantile spasms are caused by a specific pattern of abnormal brain activity.  The way that the neurologist described infantile spasms is like this: There is (abnormal) static going on constantly in Ryder's brain.  For as long as that static is occurring, he cannot learn anything, and his existing skills (smiling, babbling, rolling, sitting, etc) will regress.  In many cases, the babies that get these seizures have "bad" brains (the neurologist's wording) and would not likely develop normally whether or not they were having the seizures.  He is confident that Ryder doesn't have a "bad" brain because of his "normal" development up until this point.

The medication has one major side effect and that is permanent peripheral vision loss that cannot be regained once the medication is stopped.  So off to Toronto Sick Kids we went to have a special test done on Ryder's eyes as a "baseline" to track any potential vision loss in the future (basically an MRI of his eyes).  Good news was that they said his eyes looked normal!

The medication turned him in to a little zombie baby.  He slept about 20 hours per day for the first week he was on the medication.  The seizures stopped as soon as he started on the medication.  It honestly seemed like a miracle and like it was too good to be true.  Unfortunately, it was too good to be true and after 12 days seizure free, he started having small clusters again.  His follow-up EEG was cancelled because if the seizure movements are still present, then that means the chaotic brain activity is still present too.  The neurologist saw us within a few hours of the seizures returning and Ryder started on another medication called Prednisolone (the active form of prednisone).

This was the medication the neurologist had warned me about the first time we saw him.  One of the side effects is extreme irritability.  The doctor stressed again and again how I could not even begin to imagine how irritable and miserable Ryder would be…essentially he said Ryder would be screaming 24 hours a day for as long as he was on the medication…they gave us a prescription sedative for Ryder for the times when we couldn't stand the screaming anymore.  There are also other side effects like excessive weight gain in the face and trunk, increased blood pressure, heart problems, and a decreased immune system (the nurse said I should probably just not leave the house for the next 8 weeks…).

As soon as Ryder started on the medication we noticed a huge increase in his appetite.  He didn't get grumpy right away which was a nice surprise!  The seizures continued for a few days and the doctor increased his dose to the maximum for his weight.  The increased dose seemed to work and we have not seen any seizures since November 30.  His follow-up EEG showed a very slight improvement in the hypsarrythmia (chaotic brain waves), but unless the abnormal brain waves are completely gone, the treatment is considered a failure.

Throughout his prednisolone treatment Ryder was definitely grumpy.  He grunted and groaned ALL the time.  He stopped sleeping…he was sleeping a maximum of 6 hrs each day.  The sedative we had been given, which I had thought would mean a full nights sleep, knocked him out for 2 hours and then he would be up the rest of the night groaning.  It was exhausting.  He stopped smiling and laughing.  He wouldn't try to sit up.  

After about 3 weeks on prednisolone, we were about to get a few smiles and laughs out of him.  It was wonderful!  Other than being miserable, we haven't seen too much regression with his skills, and we are thankful for that.  He loves being held and snuggled, and despite being grumpy, he is still such a calm and laid back little guy.  He is definitely a fighter and we couldn't be more proud of all the things he is learning and trying to accomplish.  

I have heard other IS parents refer to their children's accomplishments as "inch stones" as opposed to milestones and I can certainly see why they do.  When someone tells you that your baby is going to lose all of the skills they currently have and essentially go back to being a newborn, you have to change your perspective.  We are thankful for all of the "little" things and are learning not to take anything for granted.  He can hold his head up, smile, laugh, and roll.  Considering everything he has been through and is going through right now, he is doing well!

Happy Holidays!