Catch up...

I'm not sure where to start...it's been way too long since I last blogged. I guess I'll start by saying Landon came down with an Upper Respiratory Infection a few weeks ago...it actually started almost the SAME time as Banzal was started. He ended up being admitted to our local hospital, because he stopped eating for 3 days and became dehydrated. He was only there for 2 days, hydrated, and sent home healthy. We stopped Banzal the next week, which thrilled me, because it made Landon so fussy, and not himself. It didn't help with seizures, so I'm glad to be done with it! Since then we have started Sabril(Vigabatrin). The first few days on it were rough...he had anywhere from 5 to 2 cluster seizures a day, along with numerous single jerks. The last few days have been good, but it seems we always see the "honeymoon period." I'm still not sure if I like Sabril due to the side effects, but we are trying it. We go back to Philadelphia next week as well as Pittsburgh gentics. We have to see an eye specialist in Pittsburgh soon also for Landon's closed tear duct...poor little guy never wins. It seems surgery to open the duct is in the future, as well as a possible muscle biopsy. We also have a day class in Philadelphia to start the Ketogenic diet...has anyone had luck on it? I'm excited to start it, and hoping we see improvement!!!

On a happy note...LANDON TURNED ONE!!!!!!!!!!!!!!!! We had an over the top 1st birthday bash with 85 of our closest family and friends at our local park!!! Landon did amazing all day!!! And after it was over he came home with about 60 outfits, a battery operated 4-wheeler, bike trailer, tiny piano, luggage, 2 sit to stand toys, books, gift cards, money...and that isn't half of it!!! You could feel the love for him that day...it was pretty amazing, and overwhelming. I couldn't have asked for anything better for him to celebrate a crazy, unforgettable first year! He seemed to really enjoy all the attention, and couldn't stop laughing all day!

Turning one seemed to really be his turning point! It was like he woke up and decided it was time to get serious! He is so incredibly strong, although his tone is still pretty weak. BUT he is standing with assistance! That is a huge accomplishment! He is doing so well, I can't believe how well he continues to do everyday!

I hope to post pictures from his birthday on here soon...if I can figure it out!

Hope everyone is doing well as always!!

XOXO,
Heather

Banzal?

So it's been a week since Landon started Banzal. Since then, he went 3 days with almost no sleep, and Sunday started with a fever(which he currently still has on and off). He has been the the pediatrician and they said he looks great. Maybe a slight upper respiratory infection. I'm just starting to put together pieces, that maybe it is the banzal? Online it said to contact your doctor if you have a fever, or sleeplessness, along with other things. I have called twice and continue to wait for the neurologist to call! Frustrating! Hopefully he will be better soon! This is the first time for him to be "sick sick" as I call it. The one good thing is he continues to be pretty much happy! Boy are we lucky...or I should say I, since I stay home with him. Anyone else have any side effects from it?

On the seizure side, he continues to have them daily or every few days. They have been much more severe since we stopped depakote, lowered topomax, and started the banzal. Maybe it's too early to tell?

Hope all is well!!!

Where do I begin...

So it has been almost a month since my last post. We returned today from yet another trip to Philadelphia. He continues to have seizures, not always daily, but every other day. Up to now nothing has really helped or stopped his seizures, and we still haven't found a reason to his seizures. Landon's doctor has decided to take him of Depakote, Levocarnitine, and taper his topomax. He will start on Rufinmide(Banzel) and we have started the process of getting Vigabatrin(Sabril). We also have plans of trying the ketogenic diet in the future, if the medicines don't work. As the doctor said, Landon is a hard egg to crack.

I can't believe our little baby is going to be a year in 3 short weeks...where did the time go? I also never imagined what the last 10 months have been like...numerous doctors appointments, too many medications, and trips to Philadephia. Everytime someone looks at him they say WOW he's a big boy, how old? When I respont 11 months, they normally say something about, Oh so your chasing him everywhere, or have fun keeping up...If they only knew that is my dream! Then I feel like I have to explain why he doesn't even sit up or roll over. I'm kinda sick of always explaining. We are blessed to have a wonderful little guy, but I'm ready to be done with this chapter, the seizures that is.

On a postitve note, Landon is doing well in therapy. We continue to go 2 or 3 times a week. He is almost sitting up on his own! I was so proud today, he sat himself up from leaning back on a pillow!!!! To us it is such a huge acheivement! My hopes are he will sit on his own for his 1st birthday, and we are working hard to get there!

Hope all is well with everyone!!!

Partial/Infantile Spasm Seizures

Sorry all....it has been waayyyyyy to long! I am updating from our hospital room in Philly. Landon had a repeat MRI, and prolonged EEG done. Thank goodness the MRI was normal. The only abnormality was some subderal hematoas from the prednisone (we won't be using any more steroids after that) and they are healing on their own. The EEG caught some good seizures, and now we know they start out partial and turn to infantile spasms. Thank goodness we are still here because Landon just had his LONGEST seizure...a little over 11 minutes. It seemed forever. We should be leaving tomorrow, as long as everything is going okay. Now Landon is starting depakote and weening Keppra. So hopefully this will be the answer. Still no ideas on a cause.

I'm sure i'm forgetting to update on something, but this is a quick update for now.

Hope all is well with everyone!!
XOXO,
Heather

New news...

We are back from Philly for the 3rd time. We got good news that his EEG has improved! Although he is still having problems on the right side of his brain. Which is where his seizures initially started back in November. He continues to have anywhere from 0-6 seizures a day, lasting around 2 minutes each. The doctor said at this point he wants to repeat another MRI at the end of this month/early July. He also wants a 24 hour EEG to capture some seizures, along with meetings with himself, and the gentics doctors. He was still optomistic, and thinks Landon looks great. Landon continues to make slow progress with his development. He has rolled over twice in the last few weeks! Something so simple to most, means the world to us!

Hope all is well with everyone! Thoughts and prayers for you all!

Xoxo,
Heather

Steroids...

So tomorrow will be a week since Landon has started steroids. Things don't really seem any different? We are staying optomistic things will start falling in place. Soon we will be back in Philly...

Therapy is going great! The therapist are amazing, and we have already started to see improvement! So exciting for us!

Landon had his 9 month well checkup today which was great! He is 90% for height and 75% for weight...he is starting to thin out! The doctor thought he looked great, but delayed in fine/gross motor skills as well as very low muscle tone. He also said he thought Landon's low muscle tone could possibly be from the actual cause of the seizures. I haven't been able to get those words out of my head. The thought of not knowing why he is having seizures scares me to death! (or knowing the cause scares me to death) Needless to say I haven't had the best or most optomistic day today. I try to always say it could be worse, but I'm allowed to have a day when I'm fed up...right? Tomorrow is a new day, and I plan on making the best of it!

Hope all is well with everyone! Still saying prayers for all!

XOXO,
Heather

2nd Philly Trip

So we have returned from Philadelphia again. We had a routine EEG done before the appointment. At the appointment our doctor informed us, Landon now has developed pre-hypsarrhythmia. Meaning he has hypsarrhythmia, but it isn't full blown yet. His EEG has worsened, but the good thing was he seems to be fighting full blown hypsarrhythmia. Landon has now been started on intense steroids for the next two weeks to hopefully help him become seizure free? We will again return to Philly to see how his EEG looks at that point. He had a few good days after we started the steroids, but today he has had two seizures. The doctor said Landon isn't the typical Infantile Spasm child...he is very active, which isn't the norm. The doc seemed extremely optomistic, and of course couldn't give us much information on what to expect. Each child will write their own story. All 3 of us had blood drawn to become part of a study to see if they can finally find some answers to why children have infantile spasms. Wouldn't that be nice?

We did have some fun on our way to Philly. We stopped at the Hershey factory and Bass Pro Shop! It was fun, but a very long 2 days, considering we were in the car 6 hours each way! It's a long trip, but we are finally getting some answers! Landon is such a trooper when we go, he just watching dvd's.

Thinking and praying for everyone! Hope all is well!

XOXO,
Heather