April 30th Update

Since Victor’s test results, we’ve continued to wean him from the Vigabitrin. Although, it’s too early to really tell, it does seem as if Victor is more alert. It’s our guess that the interaction of this med along with the others could perhaps attribute to that, but as usual it’s only our guess. We finally saw Victor’s actual neurologist this past week. He’s on board with us to wean Victor from his many meds, however, this will be a very slow process (per usual). It is our hope to rid Victor of (at least) the Phenobarbital and find a different med that is much less sedating. We believe there is a definite correlation with the amount of meds Victor is on and his lack of development.

While Victor still struggles with holding his head nor can he sit alone he does show tiny signs of improvement after he’s had physical therapy. In fact, just within the past week, Victor held his head for 30 seconds (his record) and I caught it on video. It was so exciting!

Another way we hope to encourage Victor’s muscle tone and abilities is by attending a swim class twice/week at Children’s Hospital’s Therapy Pool. While, he’s the only kid of his kind in the class, the Director has offered me great advice on how I can implement some techniques that will encourage him to achieve balance

and movement. I follow techniques from the Halliwick Concept, which basically focuses on letting the child feel his body in the water and gain his own ability to adjust to the flow of the water by using his body’s strength. The Halliwick Concept has shown to aid in swimming and help with head balance, trunk stability and breath control. For example, I might have Victor floating away from me and I may only be supporting his shoulders. While his legs are extended outward, I might gently sway him from side to side. Anyway, we only just started taking him this past week and I believe it will help him get stronger both in and out of the water. Let’s hope it works!

(Easter with Laura's family)

Regarding the Diet, we are slowly upping his ratio. Unfortunately, Victor recently caught a cold so we haven’t wanted to push him to the full 3.25:1 ratio, just yet. Until he gets over this little bug, we’re just playing it cool. We hope he gets over this thing soon, as he’s hardly sleeping (neither are we) and is quite cranky. Victor’s Seizures are holding at a steady 17+/day. We think this is mainly due to his cold and the recent teething his had, plus the wean of the Vigabitrin. It is not uncommon to see breakthrough seizures when a med is being weaned. Apparently as the body kind of detoxifies itself, extra seizures may occur, level off and then decrease. So, we’re basically walking a very thin line, as we wean anything---keeping our fingers crossed constantly.

Next Update: May 14th

TEST RESULTS

This past week was quite exhausting! We spent both Monday and Tuesday nights in the hospital ( 48-hr EEG) and spent pretty much all of Wednesday (we got home at 10pm) waiting for Victor to recover from his muscle biopsy and sedation from the MRI. We expected not to get results until our next appointment with Victor's neurologist, scheduled on April 26th. However, this morning we were called in to go over the results with a different neurologist.

Scared as I was, waiting for the hours to pass before we showed up for the appointment, the results are better than we had thought or would have hoped for:

EEG Results: Basically, most of Victor's seizures are myoclonic. Some activity that we had questioned was confirmed to be just odd eye rolling, not seizure. He also had one Clonic seizure type that seems to stem from too many myoclonics: these appear randomly not as often as the myoclonics.

MRI Results: After a lengthy intro explaining that some of the neurologists felt Victor has some odd devastating syndrome, the Doc we met with confirmed otherwise since he is a specialist in mitochandrial diseases. Showing no lactate peaks in all of Victor's MRI's, the doc saw only one other case similar to Victor's. Basically, Victor has been taking Vigabitrin (Sabril) since November. This med was great for stopping the Infantile Spasms. However, there was some controversy as to whether the increased dose in this med may have also increased his myoclonic seizure activity. The Vigabitrin combined with the effects of the Ketogenic Diet have changed a portion of Victor's cerebellum--effecting his increased eye rolling (which we thought to be seizure activity). The good news is that this is somewhat reversible. In the one other case this particular doc had and only one published case, when the Vigabitrin was decreased so too did the myoclonic seizures.

Therefore, we have started to wean Victor from this medication. We also spoke with the Doc about weaning the Phenobarbitol, as it has definitely slowed all of Victor's development. Having said this, it will be just before Victor's first birthday before he will be totally off of the Vigabitrin. We will have to play another waiting game to see if these myoclonic seizures will stop and lead toward stopping the other type of seizures that he's had. We also plan to increase the ratio of the Diet in a few weeks, hoping that the Diet will be the impetus for helping Victor overcome these obstacles.

It is our grande hope that with a whole lot of positive thinking and the weaning of his meds, that Victor will start to show improved vision & motor abilities. Also, I just enrolled him in a swim class at the hospital's therapy pool. Twice a week, on top of his 2x/week physical therapy, he'll use the buoyancy of the water to feel movement in the water and hopefully out of the water.

All of this is yet another milestone that we hope to successfully pass. We urge you to join us in visualizing Victor's rapid development and success!

THANK YOU!

April 3rd Update

I grabbed the camera and enjoyed Vic's little face, tube-free, when his tube popped out by mistake. This happened the very next day after my last update. I’m still not sure how it happened, as I was holding him at the time. My friend, Amanda, was visiting and while she and I were talking; there dangled his tube. I flew into a slight panic State, realizing that I’d have to take Vic to the ER because the tube was placed by X-ray back in January.

After discussion with Gary and our doc’s office, we agreed that I would take him to our pediatrician’s office and learn to place it myself! It wasn’t as bad as I thought it would be. Victor actually slept almost through the entire process. I’m so glad that he’s so even-keeled about things!

Other than the tube, not much has changed since the last update. Victor has been tolerating his current ratio but still has 20 or so seizures/day. On occasion he’s had fewer but not quite the number we’re aiming for (zero).

Victor is still teething and drooling everywhere. He’s just about to cut the top two on either side of his middle teeth. All this teething keeps him up at night and us too! Victor still wakes in the middle of the wee hours and stays awake for about 2 hours at a time. Yes, we’re pooped and working in shifts to remain somewhat sane.
(photo to right: Vic passed out and Sammy watching over him)

FUN THINGS: This past Sunday was Victor’s first time at the public pool. It was a bit overwhelming for both he and I (it’s weird seeing other people’s reactions to Victor). There were kids and families everywhere, splashing about, making it difficult for me to allow Victor a calm place to enjoy the water. We stayed in the water for only 20 minutes or so. He really liked it when I jumped up and down with him in my arms. This boy loves fast movements! The other thing we do with him that he really loves is swinging him around in a blanket. Gary and I take ends and toss him about…it’s so great to hear him giggle! Speaking of giggling, this past Saturday while sitting at the dinner table, out of nowhere, Victor gave us a toothy grin and giggled. It was very brief but very memorable!

Boy, I really miss hearing him giggling on his own! We’re still hoping the diet will allow us to wean him off some of these meds. They really suppress his true character, which makes it difficult to stay focused but we continue to try as we see him enjoy physical therapy and vocalizing in his Little Room. (photo to right: Sammy & Zebee curled up on Vic's baby bag)

UPCOMING TESTS: Next Monday & Tuesday, we will be at Children’s hospital for a 48-hour video EEG. We are not looking forward to it. Wednesday, we’ll also be at the hospital for Victor’s 3rd MRI and a muscle biopsy. These are tests to see if anything has changed and to determine if there is a focal point to his seizures. The biopsy is one last test to try and determine the root cause of his seizure disorder. It will be a long week!

The following week, Gary will be out of town for several days, which means that I’ll be holding fort alone. We thankfully have a night nurse scheduled during those nights but those days might be a little long.

A BIG THANKS to those who have prepared us meals and offered to help us in various ways. I can’t express enough how comforted we are by your actions!

Next Update: April 23rd