Verse of the Day

Thursday, August 14, 2014

Re-check at Phoenix Children's Hospital

My youngest son had his re-check at Phoenix Children's Hospital yesterday. For those of you who don't know the story, my son has a limb length discrepancy and other related knee/leg issues. We were told that prior to his coming to the adoption agency in Ethiopia, he most likely crawled into a cooking fire. His left knee and left elbow have significant scarring. In fact, it was this scarring that kept him on the adoption wait list for longer than usual. Prospective adoptive families feared he had been abused in some way (we did not fear that; we just saw his beautiful smile!). Lately, he has been in more pain and exercise is difficult. His weight has climbed, and his limp is worse.

The news wasn't great, although I am so thankful we have access to quality medical care. The physician (Dr. Mohan Belthur) believed S. most likely had a severe fracture in Ethiopia that may have been treated with fire to prevent infection. Of course, this is only conjecture. He certainly may have "simply" fallen into a fire. Anyway, S.'s growth plate was severely damaged; he will need an MRI to evaluate the extent of the injury. He completed lacks a knee cap, something I did not understand. He is looking at at least 3 surgeries--- 2 limb lengthening procedures (the first one in about 1.5 years and the second one around the age of 16) and perhaps some ligament repair. Knee replacement has also not been ruled out, but that will most likely be at a older age.

My son also needs to consistently wear an orthopedic shoe, get some physical therapy for a weak quadriceps and tight achilles tendon, and lose weight. The weight loss issue will be difficult; for anyone who has dealt with adoption-related food issues, I'm sure you can empathize! S. always eats like he is starved; food fills a physical and emotional void.

We sure would appreciate prayers for our Superman. This seems to be our season of medical issues.

Sunday, August 10, 2014


I knew it would be a normal study. Even after trying to deprive myself of sleep in order to perhaps
encourage a seizure--- the 60-minute EEG came back clear.

My neurologist was not too surprised, either. She said it is pretty common to get a clear EEG just because it is such a short snapshot of time to analyze brain waves. Nonetheless, she felt quite confident recommending Vimpat, an anti-seizure medication.

The reasons behind taking seizure medication with a clear EEG are these: first of all, my MRI is scary. I have tons of lesions in areas usually deemed epileptic (temporal lobe). Second, I have a history of both a grand mal seizure (albeit 26 years ago) and (perhaps) have had several partial seizures. In my case, the partial seizures felt like hypoglycemia coming on; they then progressed with tachycardia, a "creepy crawly" ice-cold water feeling on the back of my head, severe chills, and then uncontrolled crying (while I'm telling my kids, "I'm fine, I just can't stop crying.") The episodes made me feel a bit panicked, and once I did have shortness of breath. That's what made me ignore the episodes initially--- maybe it was just a panic attack? My neurologist said my symptoms did point to partial seizures, which have many different manifestations, including the symptoms I described.

But the most convincing reason to start seizure meds was the possibility of what could happen to me if I did have a seizure? What if I'm driving a car-load of kids? What if the partial seizure becomes more generalized and I fall at home? What would a seizure do to an already "dinged" brain? My neurologist did not like the possibilities and strongly encouraged me to be on medication. I started taking Vimpat the day after the EEG.

Regarding Vimpat, so far so good! Initially, I only felt a bit tired. By the next day, I had some occasional dizziness and then some itchiness. My hearing got even worse, due to the incredible ringing in my ears. Yet, after a few days on the medication, all the side effects mellowed. Only fatigue remains, and I'm pretty much tired all the time--- so what's a bit more?

Today, Sunday, was the first day of taking a full dose (100m.g. twice a day). I don't seem to feel any different. I am so thankful; I am typically the Queen of Side Effects or Paradoxical Effects. Could it be that I've found a good medication?