Sunday, July 31, 2011

Drugged and Drowsy

Today has not been one of my most positive days.  Levi is on so many sedatives that he is either asleep, or fighting sleep, all the time.  I was so excited to begin Sabril but now I'm having second thoughts.  He's only been on it for a week, and I know that isn't giving it sufficient time to work, but it's just so sad to see him so exhausted all the time!  I also know that when he sleeps he doesn't have seizures, and that is a good thing.  I guess I just wasn't expecting his drowsiness to make me feel so sad.  He didn't have as many ticks today, so hopefully the Clonazepam is doing exactly what the doctor expected.  Speaking of doctors, we are so blessed to have such a wonderful neurologist!  Dr. Chrusciel is caring, and has been in contact with me throughout the weekend, which is amazing!

I'm going to end here because I'm tired and I'm afraid I might whine some more.  I'll come back tomorrow when I feel more positive.

Seizure Diary - 65 Spasms in 15 episodes; Ticks - 7

Saturday, July 30, 2011

Odd Behavior

Levi continued to be sleepy today.  Our church hosted a blood drive in honor of Levi, and we gave blood and spent time with our family and friends, which was great!  Levi is exhibiting some different seizure behavior that has us a bit concerned, though.  His eyes are rotating to the outer edges sometimes.  By this I mean that his right eye rotates to the right and at the same time his left eye rotates to the left.  It's creepy and I don't like it.  His eyes rotate downward as well, which he has done before, but is happening more often now.  And his ticks have doubled.  The doctor has told us to give him Clonazepam (Klonipin) twice a day now.  This med was originally prescribed to give as needed at bedtime to help him sleep.  So I'm sure he will be even sleepier now, but on the bright side he doesn't have seizures while he sleeps, and this should give his little brain a much needed rest. We are only giving the Clonazepam until the Sabril reaches a higher concentration.  Please, please pray that the Clonazepam fixes these issues, and that the Sabril is not causing more harm than good!!!!  That is my largest concern right now.  I'm watching Mr. Levi very closely, though, and will report any other issues or concerns.  If anyone reading this has had a child on Sabril and had similar issues, please comment on here or email me at  I would really appreciate it!

Thank you so much for your prayers for our precious little man!

Seizure Diary - Spasms - 77 Spasms in 23 episodes; Ticks - 14

So sleepy!

Me and Jodi :)

Me and my Dad :)

Me and my Aunt Misty :)

Friday, July 29, 2011

Another Busy Day

I think today was even more crazy than yesterday.  I woke up early so I could pull everything out of the laundry room and get ready for the new super awesome washer.  Levi usually wakes up off and on anywhere between 6 and 7, but this morning he slept clear through until 8.  I fed him and he fell asleep until I woke him for therapy at 10:15.  Afterwards he fell asleep and slept until after 2!  Poor little guy was just exhausted.  Another meal and another nap on Moga's lap until dinner at 5.  Then we went to a quarter auction with Moga, which was a lot of fun, and he was awake for the majority of the time there.  Mom and I both won a certificate for a jewelry booth that happened to be owned by a lady I used to go to church with.  We each picked out a gorgeous bracelet, and went home and Levi drifted off again.  He's been super tired, but happy and content.

He had developmental therapy today with Mary.  They played in side-lying position, and with some musical light up toys.  He was awake and alert through the entire session.  He seemed very interested in everything Mary was doing.  His head control continues to get better, and he requires no chin support when drinking his bottle now!  Way to go, Levi!  I'm thrilled to see him making progress!

As far as the seizures go, I'm not sure I got a good count today either.  He seemed to have quite a few this morning, but then this evening he didn't have as many as usual.  I'm ready to see them go away for good, though!  Tomorrow we have a blood drive at church that's been dedicated to Levi.  We'll be there from 10 until 2.  We're looking forward to it!

Seizure Diary - Spasms - 52 in 23 episodes; Ticks - 9, two of which were head ticks without stiffening.

Thursday, July 28, 2011

Busy Day

Our washer went out a couple days ago so we spent our morning shopping for a new washer.  We got an awesome deal at American Furniture!  Their St. Louis stores are closing, and we didn't really expect much from the liquidation sale, but it was actually great.  We got a high efficiency front load washer for the price we expected to pay for a basic top load model!  Levi was so good all through our shopping and lunch!  It's days like today that I remember the not too distant past when we didn't take him out because he was crying all the time.  I thank God that those days are over!  He's a happy little guy now!  Then we went to Aunt Mishy's house to enjoy Moga's homemade lasagna, salad, and garlic bread.  Yum!  And of course Levi just loved being cuddled by everyone there!  He's had a decent amount of sleep today, and did not have a crying spell again tonight!

The seizure count I have for today is very low, but I don't know how accurate it is because of all our activity today.  I tried to pay attention, but with all the shopping, cleaning, and eating it was difficult. lol  I'm really praying that the count is so low because the Sabril is starting to kick in!  That's what I'm going to believe!  By the grace of God Sabril will knock these seizures out once and for all, and quickly!

Tomorrow a special little boy named Parker will be born, and I'd like to ask you all to please pray for him!  He has undergone three surgeries in utero, and his chances of survival are 50/50.  We know God can do well over what we can even imagine (Levi and Caitlyn are proof of that!) and we are believing the same will happen for this little peanut.  Please keep Parker and his family in your prayers on his very special birthday tomorrow and in the weeks to come!

Seizure Diary - Spasms - 33 - I lost count of episodes but I would guess around 20 or so - Ticks - 3

Playing in side-lying position.  I don't mind this kind of therapy!

 Me and my big brother Tommy.  I love my brother!

Wednesday, July 27, 2011

So Alert

Levi took such a long nap this afternoon that he's been awake the whole rest of the evening!  It's 10:00 and he's still up. lol  He's content to sit with me and watch tv or whatever I happen to be doing.  He slept right through his afternoon feeding, but definitely made up for it at dinner!  He's had a great day!  His seizures are slightly better than yesterday.  I have noticed that they are not clustering.  I've also noticed a few times where he starts to go into a seizure but then stops before it happens.  That's pretty good for only being on the medicine for two days!  Well, he's calling me, so I'm going to cuddle with him and hopefully he falls asleep before I do. LOL

Seizure Diary - Spasms - 50 in 22 episodes; Ticks - 9 plus one very strong one at 5am this morning.

A New Day

Since Levi was so clingy yesterday, I was a bit nervous about how he would sleep last night, but he did wonderfully!  He woke up about 4:30 am for a diaper change and took a bottle, and went right back to sleep until about 7:30.  Can't complain about that!  I guess he really was just having an off day yesterday.  He's been his normal, content self today.  He seems super relaxed, and I know he was fighting hard to stay awake!  We worked on some hip weight bearing exercises, and he just couldn't fight any longer. lol  It's a very comfy position.  He fell right asleep and is still snoozing in his beanbag.  He needed a good long nap.  I'm sure many of you have probably noticed that I've added a seizure diary at the end of my posts.  This really is just for my notes, so I can have a daily log while he's on Sabril.  I'll wait until this evening to post a final count.

Tuesday, July 26, 2011

Sabril Has Arrived!

Since I didn't speak with the people from Sabril until yesterday afternoon, I was very impressed when it arrived before 9:00 this morning.  I was thrilled to begin it right away.  Unfortunately shortly after he took it he became a bit cranky.  He was fine as long as someone was holding him, but he did not want to be put down.  Usually he is happy hanging out in his beanbag or crib for a while, but not today.  I am praying that this is not from the Sabril, or if it is that it will quickly go away!  This is just one more medicine that causes sleepiness, and I'm sure it's made him feel drowsy.  It could also be from teething.  Or a combination of both.  Maybe it was just an off day. I was exhausted today as well.  I really hate this extreme heat!  I love to have the windows open and feel a fresh, warm breeze, but when the temps get this high you can only closet yourself in the house with the AC on full blast and hope for the best.  I hope it cools down soon!  I would love to start taking Levi on walks.

We got a late start on the day, and with Levi wanting to be held, I didn't get a whole lot accomplished.  I wouldn't have gotten anything accomplished had it not been for Miranda and Mom.  Miranda came over and cuddled with Levi while I made pot roast, and after dinner while I took Miranda home Mom fed Levi, gave his meds, and bathed him.  I finally got him into a decent sleep and he's snoozing in his beanbag.  I hope tomorrow he's back to his content self.  Maybe we'll both be back to normal tomorrow. lol

Seizure Diary - Spasms - 54 individual in 14 episodes; Ticks - 9?

Monday, July 25, 2011

Update on Baby Caitlyn...Keep on Praying!!

For those of you who haven't read my previous posts about Caitlyn, you can read "Sad News for Baby Caitlyn" to get a background.  Tuesday she underwent surgery to have the ECMO tubes removed, and the doctors could do nothing else.  They did not expect her to last very long after the surgery.  Well, that was a week ago, and not only is she still with us, she is moving toward good health!  Praise GOD!  Her oxygen has been turned down, and yesterday her breathing tube was removed!  Today she had to have a cpap for a bit of breathing help, but she is still doing wonderfully!  Thanks to everyone who has been praying for her and her family.  Keep the prayers coming!  She is living proof that as long as there is breath left in us there is hope!  She is a true miracle, and I'm so glad I've been able to witness the wonders that the Lord is working in her!

Sabril Due Tomorrow!

I just spoke with the people from Sabril and they are shipping the med out today for delivery tomorrow!  I am so very excited to begin this!  I've been tracking Levi's seizures since yesterday so I can have a good baseline of before and during Sabril.  He had a lot of seizures yesterday, but thankfully not quite as many today.  Please pray and believe with us that Sabril will stop the seizures quickly and for good, and also that there will be no negative side effects, specifically blindness or loss of peripheral vision.  Thank you all for your prayers!!!

Levi had physical therapy today and we spoke a lot about weight bearing so that he can stop wearing the brace except for bedtime.  We've asked the ortho doctor to write a prescription for a stander and AFO's.  The AFO's are ankle braces that keep the feet flat and support the ankles while standing, and the stander is a device that supports him so he can practice standing and get some healthy weight bearing in his hips.  We also went over a couple positions that promote weight bearing for his hips that I can do now.  To be honest, I've been a bit hesitant about doing those exercises this week because I didn't know if I had his legs in the right position.  So I showed the PT what I was doing and she confirmed that I was doing it correctly.  What a relief!  The sooner he bears weight on his hips consistently the sooner he can be out of that brace for the majority of the time!

It feels so good to be moving forward in more areas.  I feel like the worst is behind us, and we don't have much farther to go to get rid of the seizures and brace.  Life is good!  Levi has been happy except for the occasional teething pain.  The poor baby was drooling nonstop this morning.  Hopefully those teeth will begin popping through soon.  There's not a spot on his little gums that isn't either a bump or very swollen.  All in good time, I guess.

Seizure Diary - Spasms - 64 Individual spasms in 21 Episodes; Ticks - 8

Sunday, July 24, 2011


Today was the first day since Levi got the Spica cast over two months ago that he went to church with bare legs.  He even wore his little blue Nike shoes.  He's so cute!  The service was awesome as usual, and we had a great time visiting with family and friends.  Levi has been sleeping a lot again today, but he's been pretty happy.

I counted his seizures today, and he had around 85 individual spasms within close to 20 episodes, and around 7 of the stiffening/ticking seizures.  I don't like counting the seizures, but I wanted to get a good baseline before we start the Sabril this week.  I'm believing we are going to notice substantial decrease in seizure activity very quickly, and that the seizures will be completely gone real soon!  Please continue to keep Levi in your prayers.  Our prayers go out to you as well!

Seizure Diary:  Spasms - 88 Individual in 19 Episodes; Ticks - 7

Saturday, July 23, 2011

Tired Baby

Poor little Levi was interrupted during every nap he tried to take yesterday.  He was so tired that he fell asleep right after his supper and bath!  We rocked for an hour or so, and I was sure that he would wake up when I put him back in the rhino brace and put him to bed (or actually, beanbag lol), but he didn't!  He slept all the way to 3am when he woke up for a diaper change and bottle, then he was out again.  I woke him up early so he could eat before we went yardsaling, and we stopped at Provision Living to visit my mom and some of the residents there.  He enjoyed it!  He was awake and adorable through lunch, but once we got home he crashed.  Again he woke up to eat and he's been snoozing since!  Poor little guy must be exhausted.  I think it's a combination of the heat, having his naps interrupted, and being awake so much more this week. 

I heard from the people from Sabril today.  They said they need one more form from the doctor's office, which they can't get until Monday.  I'm sure we will speak with them and get it finished Monday and hopefully start the medicine Tuesday.  Please pray and believe with us that this will STOP his seizures!  I believe it will! 

For those of you who have been praying with us for baby Caitlyn Bishop, I have good news!  She was not expected to make it after her surgery Tuesday, but she is doing awesome!  Her tests are coming back amazing!  The heart blockage she's had since birth has disappeared!  Her mom said the doctors have told her they have only seen 2 miracles of this caliber in 30 years!  Praise God!  I don't know how anyone could hear this story and not believe in God.  He is so good, and He heals, we just have to have faith in Him and believe.  I'm so happy for her family!  Please keep them in your prayers.  Have a wonderful weekend!

Thursday, July 21, 2011

Sabril (Vigabatrin)

We just came from Cardinal Glennon, where we signed the paperwork for starting Sabril.  This is a medication proven very effective in stopping Infantile Spasm seizures.  It has only recently been approved in the US, but has been used in Europe and, I believe, Canada for many years.  We are very excited about beginning this!  I have very good feelings that this will STOP Levi's seizures!!  The paperwork will be faxed to them today or tomorrow, and we will hear from them probably tomorrow, but Monday at the latest.  As soon as they verify our information they will ship out the medication. So we will be starting Sabril by next week!  This is much faster than we anticipated.  We aren't yet sure if we will continue Topomax while on Sabril, or if we will wean it down a bit or all the way.  I kind of hope we keep the Topomax, it really has helped a lot, and I would think the combination of the two would take them away quickly.  Please pray with us that Sabril stops the seizures quickly! One of the possible side effects is loss of peripheral vision, so please pray with us that Levi's vision is not compromised.  He has enough vision problems as it is!

While we were at Cardinal Glennon, we ran into one of the PICU nurses, Sarah.  This was just a God thing!  Sarah transferred to another hospital while Levi was still in the PICU, so she had no idea how well he was doing.  She happened to be there with her son, who is undergoing treatment for lymphoma (please pray for him!).  It was wonderful to see her and show her how far Levi has come since his days in the PICU.  Sarah saw him at his sickest, and she was just amazed at how big he is and how healthy he looks!  We are SO glad we ran into her!

Tuesday, July 19, 2011

Good Times

Last week was a good week.  Levi has some fussy times before bedtime due to teething, but compared to the way he used to scream, this is like a walk in the park.  Poor little guy, his bottom middle gum is so white that tooth should be shooting through any minute, and his canine and molar areas are a combination of bumps and very swollen gums.  His whole little mouth must hurt.  He's learned to chew on the bottle nipple.  It's so cute!  No matter how hard I try, though, he refuses to take a teether.

I've still been holding the spoon and bottle in front of him during mealtimes so he can focus on it before I put it in his mouth.  He seems to be looking at it and recognizing it faster than before, and his eating has gotten even better than it was.  It's so adorable to watch him chew :)

Friday we visited the ortho doctor and learned that Levi will need the brace until he is crawling and weight bearing on his legs on a regular basis.  Even then he will need to wear it at night.  I was disappointed by this news at first, but Dr. Puryear told us that the x-ray showed that Levi's hip is looking excellent.  He said we don't have to use it strictly 23 hours a day, which also made me happy.  Sometimes I just like to hold him without that darn thing on.  BUT we are still being pretty strict about it.  I never want him to have to go through having a Spica cast again, and I'll do whatever I need to so we can avoid it.  We have begun working with the therapists this week on weight bearing exercises.  Levi continues to improve with his head control.  He's really working on it all on his own!  Good job, Levi!

This weekend was his first camping trip, and we had a McDonald family reunion.  Many of us camped the whole weekend, and it was great to relax and catch up with everyone.  It sure was hot, though!  Thank God for air conditioning!  Levi did great.   He loves the sun and warm weather, and this weekend was no different.  He enjoyed being passed around and even slept all night!  He must have been tuckered out.

Here are a few pics of the weekend:
Cory and Levi
 Levi in his bonnet, as Aunt Shell calls it :)
 Sophie, Billy, Lisa, and Mary
 Jeramiah, Katie, and Daren
 Mary and Levi

Monday, July 11, 2011

Good Weekend

We had a nice, relaxing weekend.  Sunday we went to church, which is always wonderful, and out to dinner with family for my Dad's birthday.  It's always great to get together!  Levi was so good, he chilled all through church and dinner.  He has been having crying spells in the evening again, but he's not screaming, and they last (usually) for less than an hour.  I'm pretty sure it's his teeth.  He has lots of bumps and the gums over his molars are hugely swollen.  Poor little guy!  We got him a little blow up duckie bathtub, which is great because he can lean back against the tail and it supports his neck.  He had his first bath in it tonight and loved it!  It's easier for me, too!  I had a makeover today.  My hair is curly and it's been so humid lately it just keeps getting bigger and bigger.  Well, last night I was ready to shave it all off my head, so today I went to my trusted friend and hairstylist and got it cut short and colored.  This is huge for me because I never cut my hair short!  I have to say I really like it!

That's all I have to report.  Seizures are about the same, as is everything else.  Life is pretty good :)

Duckie Bathtub

 My New Hair

Sad News for Baby Caitlyn...Keep Praying!!!

Baby Caitlyn's parents have received bad news and need your prayers so much right now!  Pray for peace for her family, but more important pray for a miracle for Caitlyn!  We know it can be done, Levi is living proof that the Lord heals!!  Let's all join together and believe her healing is done! Amen!  Here is the update from her mom...

Was told today that they are weaning Caitlyn off of ECMO this week and then stop all the treatment if she didn't do well after being off ECMO. Her lungs aren't fixed so it will not work. They said to get all my family in to see her this week because next week it will be over. She will be in my arms and if it is nice we can be outside when it happens. Please pray for her to be peaceful. and i would appreciate if the comments about how she is better off just be kept for now. Thank you to everyone who has prayed for her

Saturday, July 9, 2011


Saturdays are always fun!  As usual, we went to yard sales and lunch.  Levi was great!  We just spent a nice, relaxing day.  He had a bit of a screaming episode this evening, with some throwing up.  I think his teeth were hurting (his gums are hugely swollen).  But he's back to his calm, happy self again.  We worked on some side lying and playing at mid line.  I got a few adorable pics of that!  All in all, a terrific day!

Friday, July 8, 2011

Levi's First Swim

We had a very busy, fun day today.  Daddy went golfing, and Levi and I stayed home for therapy.  Shawnery and Mary (PT and DT) came together today, and true to form, Levi decided to fall asleep literally two minutes before they came in.  He just would not wake up no matter what they did.  Shawnery was pretty sure he wasn't actually sleeping.  I put him on my lap and bounced, and immediately he smiled.  The little turkey was totally faking it!  So we set him on the floor in a sitting position and they brought out a little piano and tapped the keys with his hands.  He fussed for a bit, until he realized that it wasn't so much work, and was actually quite fun.  From then on he did really well and completed the entire therapy session!  He "played" with some toys, and worked on rolling over.  All in all it was a very successful session!

This morning I incorporated some of the things the vision therapist taught me into our daily routine.  I showed Levi his bottle and gave him time to look at it, then put both his hands on it, and put it in his mouth.  I was so busy holding his hands in place that I didn't give him any chin support, and much to my surprise, none was needed!  He drank the entire bottle with no chin support!  On another positive note, I was reclining on the couch with him facing me, his head on my chest, and he brought himself to a sitting position!  Tommy was sitting behind him, and as he talked to him, Levi looked around to find him, and proceeded to sit up again!  The child amazes me!

Then we went swimming with Aunt Mishy and he wasn't too sure about that cold water, but once he got used to it he loved it!  So much so that he fell asleep.  Too cute.  He was so tuckered out that he slept while I dressed him, while we went out for ice cream, the car ride home, and a good hour after we got home.  A very busy day, but so much fun!  I took pictures of his very first swim!!

Thursday, July 7, 2011

Vision Therapy!

Levi was a happy little guy today!  The vision therapist, Becky, came by for her first visit today.  She said he uses his peripheral vision quite a bit, and exhibits a pattern called "look/look away".  This means that he will use his peripheral vision to look at something, then look at it directly, then look away.  When he looks away his little brain is processing the information that his eyes have just seen.  She said that the more familiar an item becomes, the quicker he will be to look at it, and the longer he will focus.  She used some of her things, and then his little giraffe that used to hang over his bassinet, and he did look at the giraffe more quickly and longer.  So interesting!   He scored a 2.5 on a scale of 1-10.  Becky said that means he has emerging skills, and that it's a pretty good place for him to be at this point.  We will be working on holding objects in front of him and giving him time to look at it, while not speaking too much.  This will allow him to concentrate on looking instead of listening.  I'm really excited to learn this new information, and we have already worked some of this therapy into his daily routine.  Becky was very easy to get along with, informative, and we liked her a great deal.

Levi and I met my sister Misty (aka Aunt Mishy) for dinner, and then she kindly took him home with her so I could go grocery shopping.  We are taking him swimming tomorrow, so I got him a cute reusable swim diaper that looks like a speedo (too cute!) and a neat double swim ring, one side for him and one for me, that has a headrest for him. I liked that one because he still doesn't have control of his head, although I see improvement every day!  He has been a happy little guy for the most part, and I am so thankful for him!

Wednesday, July 6, 2011

Good Day

We had a good day today.  I got some stuff done around the house, and Levi was very content today.  Still having seizures but the amount seemed to be down quite a bit.  He slept in his crib for the first time in over a month!  The cast was so uncomfortable he spent naps and bedtime in the beanbag, which he still loves.  Maybe I'll get to sleep in my bed too. lol  He has been doing great with head control!  All of a sudden he's been working on controlling his head, and this is something he has started all on his own! He just keeps amazing me!  What a wonderful little guy!  Our vision therapist comes out for her first visit and assessment tomorrow, and we are very much looking forward to that!  I'll let you know how it goes!

Levi napping in his very own bed :)

 Moga and Levi cuddling :)
 All worn out from OT, fell asleep with therapy toys.
 Levi's first 4th!

Tuesday, July 5, 2011

So Sweet

Well I never did actually count his seizures, but I think they are about the same.  He does seem to have less episodes, but the number of clusters within an episode are sometimes more than before.  I talked to our regular neurologist today and she gave me her email...hurray! we won't keep playing phone tag all the time.  This is great because I need to be in contact with her a couple times a week.  We decided to go up to 2 mls of Keppra.    Although Keppra didn't take away the spasm seizures before, we are hoping that the increased dose, in conjunction with Topamax, will make a difference.  If not, our next step will be Sabril, a medication that has been recently approved in the US, but has been used for many years in Europe and Canada.

The OT came out today, and even though Levi had a good nap before she came, he slept through half the session.  She was able to work with him on sitting up (now that he's out of that cast! yay!), a little bit of weight bearing, body recognition, stretching, etc.  He wasn't too happy about it, and was comforted in Moga's arms where he fell asleep.  We made the follow up appointment for Levi's hip for the 15th of this month.  I'm hoping that the doctor will decide we can keep his brace off except for naps and bedtime.  He's supposed to wear the brace 23 hours a day for 6 weeks, but his hip healed so well in the cast, my hope is that he will continue to move along more quickly than expected.  It's such a joy to hold him without a cast/brace even for such a short period of time right now, I can't wait for it to be gone for good!

He's been so very sweet and good lately!  I think we've finally got all his issues under control except those darn seizures.  Most of the time he's content to be held, or hang out in his crib or beanbag, or whatever else we want to do.  Tonight we went with my mom to a quarter auction.  It was my first one and very much fun!  Levi was so wonderful!  He sat in Moga's lap and cuddled with her and smiled at her.  It's such a far cry from before when he used to scream all the time that I just find myself thanking God over and over again.  I'm so glad those days are over!  He's such a joy these days, and he seems to be making progress again.  I'm believing pretty soon he will start learning and developing at a quick rate and make up for lost time.  He's such a smart little guy!  Well, that's all I know for now.  Will keep you posted :)

Sunday, July 3, 2011

So Far So Good...

Levi's been so good all weekend!  Very calm and content.  We were going to go to the fireworks display last night, but he was running a low grade fever (I think from teething) and we didn't want to take him out in the heat, so we stayed home and relaxed.  We gave him another bath in the big tub and he's just so cute!  He relaxes as soon as his little body feels the warm water.  I usually dread washing him up and leave it till last because he cries, but last night he let me wash his entire body, including his face and hair, without even a peep.  He didn't cry until we took him out. lol  He does love his bath!  I'm wanting to take him to the pool soon.  The doctor said it would be okay and I'm sure being in deeper water will feel wonderful on his little leg muscles.

He is still having seizures, although they seem to be decreasing even more.  They seem to be clustering more, but he has fewer episodes.  I will probably count them tomorrow so I can give our regular neurologist a good idea of what's going on when I talk to her Tuesday.  We are going to a bbq at our friend Kyle's house this evening and are looking forward to having a fun time! 

Friday, July 1, 2011

Topamax to the Max

Finally talked to a doctor today now that we figured out my cell phone wasn't ringing and every call was going straight to voicemail. The doctor we usually deal with was out sick, and the consensus of two other doctors was not to go up on two meds at once (I understand where they are coming from, but the small increase in Keppra cut the ticking seizures down by more than half, and Topamax doesn't work on those seizures, and vice versa). They wanted to go up on Keppra, but we have done that before and it just didn't work, only made Levi super crabby.  He's at 5 pills twice a day of Topamax, and they allowed my request to go up to 6 pills twice a day, but that is the final increase and we are at the maximum amount of Topamax that he should have.  So if this doesn't work we will need to start a new med.   My prayer is that this will work and STOP the seizures!  They are much reduced, and seem to be even better since the shunt adjustment Wednesday.  I believe this jump in Topamax will take them away!  Please pray with us that this increase is what's needed to finally stop the Infantile Spasms!  Hope everyone has a wonderful holiday weekend!