Little Dude Update May 30th-he rolled over!!

Hi everybody. A quick update on little dude JP....

We started a new medicine this last Friday in hopes it would help corral or stop the clusters of spasms little Jp is having. We are at about 4 or 5 days into it so far and while it's helped, it's too soon to declare it help or failure yet. He's still having one or two clusters of spasms per day.

He was officially evaluated by developmental specialists last week. He was scored at 3 or 4 months for his development (both motor and cognitive), and he's almost 7 months old. So, as we expected, he's behind a bit. The good news is that we have a fantastic therapist that will be coming to our house once a week who will work with him, and show Cortney and I exercises we can do with him to help out on a daily basis.

I think little JP may be a fighter...I don't mean to sound cheesy here, or to use an old cliche, but...so far, he's doing something that is very unusual for kids who have his condition. When he had his first therapy session last week, he was simply laying on his back, not moving around much to his sides. After one session, and then Cortney and I doing exercises with him every day, he actually ROLLED OVER yesterday onto his back. This is a BIG change from only week ago, and when we do exercises, he really gets after it, and pushes himself. It's been wonderful to see just that little bit of progress since we started therapy...

The reason this is unusual is that nearly all kids who have hyppsarythmia like he does will have total arrest (or complete halting) of any development. They usually stop cold turkey and stay that way until the hypps is gone, or often times go backwards quickly. For whatever reason, little JP is fighting forward, albeit slowly, despite having this severe disorder.

He may continue this way, he may stop and regress tomorrow, we just don't know how this will end. BUT, Cortney and I are trying to take small victories when we can, and yesterday with the rolling over is one of them. We root him on, as do his three older sisters, during every exercise session. The therapist had him on an exercise ball yesterday, and I'll try to post the great picture we got of that on here soon.

We are so thankful to have found this great therapist, who is just fantastic with JP and the entire family as well, as she has the girls help out as to make it a family thing. Hopefully little JP can continue progressing forward :), one rollover at a time!!

Will post again in a week or so....

Love,
The Seivane Clan

Little JP update - May 21st

Little JP is still having his spasms unfortunately, although we're still fighting them tooth and nail with medicine changes. We saw a specialist at Stanford Hospital last week who is a premiere pediatric epileptologist, specializing in pediatric seizures. While he obviously didn't have a "magic cure" for this, he did clearly lay out our options and some sort of plan of attack. We are continuing to raise his current medication level of vigabatrin incrementally, which is now at FOUR times the dose (and is now maxed out, we can't go any higher) it was at when the seizures stopped in March.

Next up is a new medication that while not specific to Infantile Spasms, it helps all seizure types to some degree. If that new medicine doesn't work, then we'll likely try a new round of steroids again. For now, if the seizures don't stop by tomorrow we'll be adding that new general medication, which is called Clobezam.

In the meantime, we are having him evaluated tomorrow officially by the pediatric development medical folks to assess if and how far "behind" all this has put him. We are quite certain that physically he is behind, although his improvement over the last month has been quite good.

Many folks ask me what this means for him, as far long term. Well, there is no way to know that at this point. The fact is that the spectrum for these kids is so vast that we won't know how he's going to end up until he's older and things continue to move along...obviously during these episodes when he's having his spasms, it means that his brain has the hyppsarhythmia going on which is very, very bad for his cognitive development. We will continue to fight for this little guy and do all we can to get that hypps removed from his little brain...in the meantime we are loving him up at every turn and he's quite the happy little guy (when he's awake, this increased medicine dose is making him sleepy).

The family is doing well. Skylar is almost done with Kindergarten!! Stella and Soleil are doing great, all the girls are growing so fast and are little sweethearts. They are all so kind to little JP. Cortney and I are doing okay considering the circumstances, we realize this may be a long, drawn out battle with these seizures and are taking the motto of just continuing to move along with life as much as possible and not dwell. It's difficult sometimes however when we think of little JP and how he will be when he's older and life may be like....but we are doing all we can for him and that's what we have to hang our hat on every day. It's certainly not easy though...Cortney and I probably don't go more than 5 minutes in a day without thinking about it at some point...

Anyway, I'm blabbing on and on I know..but writing this is a sort of therapy for me as well....I'll update here in a week or so...I hope you all our family and friends are doing well and ready for the summertime!!

Love,
JP, Cortney, Skylar, Stella, Soleil and Little Jonpaul

Little JP's seizures are back - May 5th

Hi all, after finally gaining some momentum and little JP showing really positive signs of developing along, those little horrible spasms came back around Saturday afternoon (5/5), and have worsened quite a bit since then. We have doubled his dose of medicine in hopes of slowing them down or even stopping them if possible. We did get an EEG a few days ago and the hyppsarhthmia is back officially.

We did enjoy a good six weeks or so with little JP with him not seizing and it was great, we feel like we finally got to know him a little....we are obviously very disappointed that he is seizing again and his socialabililty is decreasing slightly now which is a major bummer.

I'll try to post an update here in the next few weeks, hopefully with better news. We are doing our best to not lose our minds, however this situation has just been so difficult on us all. The girls are doing well, progressing along great, the older two seem to have an idea that little JP isn't doing well and seem concerned about him. It's quite sweet really. Anyway, that's all for now.

The Seivane Clan