Soren's Seizures

So before we even knew Soren was having seizures, he was probably having seizures. Sub-clinical seizures is what those are called. We now realize that this is why he wasn't developing typically as a baby.

Now, to update you on Soren's seizures, the ones I first saw that day I was bathing him were called Partial Complex. For Soren, this meant he did "crunches" on the left side of his body repeatedly. These would last about 4 minutes and he would have several a day.

He did those from 6 months to 9 months when he added a kind of seizure called Infantile Spasms. Soren's Infantile Spasms looked almost like hiccups. His eyes would grow wide and he would gasp for air. These could go on for 10 minutes. The problem with Infantile Spasms is that they are very hard to get under control. And we tried the most popular/drastic of treatments--steroid injections, which I'll write about another day. Plus, with the IS, he would hold his breath and turn blue, which was terrifying. Another fun feature of IS is that they tend to happen as he transitioned to or from different levels of sleep. They would occur as he woke up. We would hear him cry out as the seizures started, being woken with a start.

At 12 months, Soren's Partial Complex had faded while his Infantile Spasms continued. He then added Tonic-Clonic (or Grand Mal) seizures. He would do a combo platter of the IS and the TC and a whole episode could last up to 20 minutes bouncing back and forth between the two.

To try and control this, we did many, many anti-epileptic drugs (or AEDs) and other treatments. Phenobarbitol, tegretol, carbitrol, ACTH (the steroids), Vigabatrin, Topomax (or Dopomax, as the moms call it), Zonegran, Felbamate, Vitamin E, B12, Dyastat (a rectal valium gel), and Lamictal. We even went to the Dominican Republic twice for stem cell injections (which we believe had beneficial results).

Soren stopped seizing on May 14th after being on the lowest dose of Lamictal for 4 days. Besides a few breakthrough Absence (or petit mal) seizures due to growth spurts, he has been seizure-free since that day!

Now the challenge is to get him up to speed developmentally!