Almost 2 years seizure free!

I have been meaning to update this blog for a while.  Our little man has been doing sooooo well!

We are now 22 months post surgery and 22 months seizure free.  I can’t believe it.  He had his 2 year follow up EEG today.  We have reached the point where he only needed a quick 30 minute outpatient EEG instead of the 24 hour inpatient ones.   He did so well.  He let them attach the leads without us there and slept through most of it.  And the best news is that it continues to look normal.  His neurologist’s exact words were that it looked “beautiful”!  We have come so far from the continuous, generalized spiking and epileptic discharges that were there 22 months ago.  Now, unless we see any seizure activity, we don’t have to do anymore routine EEGs…eek!!  We are also going to start a slow wean of his one seizure medication, Keppra.  This is so exciting and scary all at the same time!  I don’t think I ever thought we would have this great of an outcome, and I feel so thankful that we had such wonderful doctors and that we found the courage to put him through brain surgery.  As difficult as it was, it was very much the right decision.  Even with the developmental regression that we saw after his surgery, I am convinced that stopping seizures and getting him back to normal brain activity will pay off in the future.

As far as his development goes, we are starting to see some real progress.  When I last posted almost a year ago, he was basically non-verbal, and we were excited because he was starting to imitate words and sounds he was hearing.  He has been in a preschool program designed for autistic kids since August, and after an initial adjustment period, he is really thriving there.  Now he has around 150 words that he uses spontaneously.  He is starting to put 2-word phrases together.  Whenever he wants something, he always uses a word to ask for it.  Today I asked him if he wanted to go eat and he spontaneously said “yes, pizza!”.   He is starting to answer our questions with “yes” and “no”.  Cognitively, he is really smart.  He knows all his letters, upper and lower case, shapes, and colors.  We also suspect that he is reading some words.  He still struggles socially though.  He still has pretty minimal interaction with his peers, though he is starting to show more interest in Evie (he calls her “beebee”).  His eye contact with us and his teachers and therapists is so much better, but he still avoids eye contact with strangers.  He now loves finding things that get a reaction out of us, like pretending to fall down or drop his toys.  He will do this over and over if we will laugh at him.  His play with toys improves all the time, though he still prefers iphones and tablets to actual toys.  He also struggles with motor imitation, but he just figured out jumping with 2 feet off the ground.  He is so proud of this skill.  So while he still has a long way to go, we are so proud of him because he works so hard and is making so much progress.

We could not be more thankful for where we are today.  Eli has been blessed by loving family and friends, wonderful doctors and amazing teachers and therapists.  We learn everyday not to underestimate this kid, and hope beyond hope that his wonderful progress continues.  Please pray that his medication wean goes well without any return of seizures.

Some pics of his growth over the last year:

Fun summer beach vacation, riding go-karts and hunting crabs on the beach.

Turning 3 in October 2015!

 

Skeleton for Halloween. He actuall went up to some doors and said “trick or treat” with a lot of prompting.

Bonding with “Beebee” on the kindle.  His kindle is like his security blanket, he sometimes falls asleep with it.

 

Hanging out with daddy at Mardi Gras 2016 and picking oranges at Mawmaw’s.

 

So proud of himself that he learned to jump!

1 YEAR SEIZURE FREE!!

I hate to even write this post because I don’t want to jinx anything, but we are 1 year seizure free!  I remember before we went into surgery that I wanted so bad to be able to post 1 month seizure free.  I was incapable of looking this far ahead.  But we made it, and we are here.  Little man has not had a seizure in 1 year and he has had 2 normal EEGs in the meantime.  Yesterday was the 1 year anniversary of his surgery.  It is hard to look back.  This year has been difficult to say the least, but he has come so far.  We are going to celebrate today by taking him to his first movie in the theater.  I am not sure how he will like it, but we are going to give it a try!

On his developmental front, his language continues to improve.  He is using about 5-10 words now to communicate with us!  He has probably said over 100.  The biggest improvement in the last few weeks has been his “echoics”.  This is an ABA term that means his ability to imitate what we say.  He is imitating our sounds and words now which is a huge step for him in learning language.   He will start going 4 days a week to ABA therapy next month, which we are really excited about.  Here is a video with him imitating me saying “A-choo”.

https://www.facebook.com/tracy.luckhardt/videos/vb.601441044/10152727102991045/?type=3&theater

Here are some more recent pics from the past couple of months.  Thank you again for all your thoughts and prayers.  We are so very thankful that Eli is doing so well and that he is such a happy, sweet little kid.

He actually participated in Easter Egg hunts this year!

He had a great time at the Georgia Aquarium.  He was really interested in all the fish.  It was great to see!

Love this little man!

Normal(ish) Brain!

Well, it has been 10 months since our little man had part of his brain removed, and he is doing amazing!  We just spent 24 hours in the hospital for routine follow up testing.  We got to see all the members of his team including his neurologist, neurosurgeon and all the coordinators who helped get us through.  Everyone loved seeing Eli and how great he is doing.  We know how lucky and blessed we are.  He is one of their successes.  It felt great to be able to tell everyone that we haven’t seen a seizure.  It was wonderful to see the smiles on their faces.

MRI… check!  Other than the hole in the front part of the brain (his neurosurgeon said with a smirk), his brain looks perfect.  No new lesions, no other abnormalities.  Given that he had a cortical tuber, I have been worried that as his brain matures that more tubers might become visible.  Tubers are present at birth, but they aren’t always visible until the white matter of the brain completely develops.  So, we aren’t completely out of the woods on that, but our neurologist says that the odds of another one showing up continue to get lower and lower.

EEG… check!  His EEG is normal and looks great.  No spiking, no abnormal discharges, yay!

So for now we keep trucking along.  We are keeping his anti-seizure medicine the same.  We will go back in another 6 months for another 24hr EEG.  We really appreciate all the love and support over the past year.  We are more hopeful than ever that this really was Eli’s cure and he will not have another seizure in his life.

I also wanted to post because since my last post, Eli has had a word explosion!!!  After the new year, his language development really took off.  He has probably said about 40 new words in the past 6 weeks and is using about 10-15 words consistently.  He has even used words to communicate with us a few times.  I don’t know if this is just his development finally getting to the right point, but it did coincided with us start him in ABA therapy.  He is really doing well with this new therapy, and I really think it is the key to getting language to click for him.  We are getting him evaluated for autism in April.  His ABA therapists are really encouraging us to put him in their ABA based preschool next year.   He has to have an autism diagnosis for that school.  We do believe that it is the best environment for him to develop, so we are going ahead with it.

He also had his annual evaluation for his early intervention services last week.  It went really well.  He tested at 24-28 months on fine motor and was almost caught up (21-24 months) on cognition.  He tested at 4-9 months before his surgery, so he is doing great.  He is still really delayed in language and social areas (13-18 months), but getting better!

All in all, just really great news.  My little man amazes me so much.  He has been through so much and just really takes things in stride.  We are so thankful that he is healthy, happy, smart and learning things every day.

Even getting an EEG, he is the cutest little man ever…

Celebratory lunch after discharge…

Hope for 2015

As a new year begins, I have been reflecting on the past year.  2014 was definitely a doozy, and by far one of the hardest of my life.  We started out the year with Eli having up to a 100 seizures a day.  We could see his development slowing down, and we were scared.  None of the medications were slowing down his seizures.  At that point we still thought he had Doose Syndrome, as we had not yet had an MRI.  Our next move was the ketogenic diet as that is suppose to be one of the best treatments for Doose Syndrome.  We were hospitalized at the end of January to start the diet and that is when the MRI was done.  I will never forget coming back from the MRI and the neurology team was waiting outside our hospital room for us.  I knew something was wrong.  There was something on his MRI.  I remember asking if it was a tumor and was told “kind of”.  Turns out that he had an abnormal area of white matter in his left prefrontal cortex.  They didn’t know what it was at the time…cortical dysplasia, cortical tuber or low grade malignancy.   The neurologist told us that this was good news, it meant that he was a surgical candidate.  I thought he was crazy, how could my son needing brain surgery be a good thing.  The neurosurgeon came to see us, and he was talking like surgery was inevitable.  I couldn’t believe it.  We decided to go ahead with the ketogenic diet at that time and see how he did.  The plan was to give it a month and then reassess.  The diet was pure hell.  Eli ate everything, but he was always hungry.  He would stand at his highchair crying for more food.  Plus, despite being very meticulous with the diet, he never seemed to reach a high level of ketones, and it didn’t work.  So in early March, we were admitted again for another EEG.  This is when we met Dr. Goyal, a pediatric epileptologist, and began talks in earnest about doing surgery.  The weeks leading up to his surgery were unbelievably difficult.  I remember asking my mom…”How am I suppose to let someone cut open my baby’s head and take out part of his brain?”  She said that we would do it because we love him and because we can’t let him continue to suffer the way he had for months.

Well, we did do it.  We trusted neurosurgeons with our son and let them resect part of his left frontal lobe.  And now I know how truly blessed we are.  Eli has been seizure free for 8.5 months.  When I look at where we started to where we are now, I know we are extremely lucky.  Doose syndrome would have been a much tougher road.  Those parents would die for a chance to have surgery to fix their kids epilepsy.  I think and pray for those parents and kids all the time.  We are not out of the woods, but to have 8.5 months of seizure freedom is amazing, and there is a good reason to hope that Eli will never have another seizure in his life.

When we were contemplating surgery, the goal was just to get through surgery.  There was hope that it would stop his seizures.  That was the focus.  I just assumed that if we stopped the seizures that he would be fine.  His development would just pick back up and we would have a “normal” son with no more worries.  What I didn’t realize was that seizure freedom was really just the beginning of our journey.  It turns out that months of constant firestorm in your brain have long lasting effects.  Eli still isn’t talking.   A few weeks after surgery, Eli really withdrew.  He stopped responding to his name, he stopped making eye contact and just kind of went into his own little world.  I became really worried that he had autism.  I think his brain was just in shock going from constant seizure activity to none.  Some people call this “forced normalization”, and it has its own consequences.  And even now that his interactions with us, eye contact and interaction with the world is much better, I still believe that Eli fits a lot of the criteria for an autism spectrum diagnosis.  What I have come to realize is that he lost all the foundations for language and communication, and now he is trying to build those back in a brain that is damaged.  I am now learning the mysterious world of special education.  But, I am starting to realize what he needs, and I think his therapists are too.  We will be starting ABA therapy and more specifically verbal behavioral therapy this month.  He also goes to an early intervention school 4 days a week, and they are trying to find space for him in a different program that will focus on social and communication skills.

Despite all this, he is such an amazing little boy.  He learns and does new things everyday.  He loves bubble guppies and even tries to say bubble guppy.  His play with toys has gotten so much better.  He loves to play games on our phones and the kindle.  It is so neat to watch him navigate our phones and the kindle to get what he wants.  He is saying a lot of new words, just nothing super consistent.  Despite everything, he is really such a good kid.  He minds well and hardly ever tantrums.  He loves to snuggle, hug and give kisses.  His personality is really starting to emerge, and his laugh is amazing.  He really is a happy kid which is what matters most.

We are happy to be putting 2014 in the rearview mirror.  We have so much to be grateful for and hopeful for in 2015.  We hope that Eli will remain seizure free.  We hope that his development continues to progress.  We don’t know what his future will be, but we have more hope than ever that he can catch up and have a wonderful life!

Eli at his 2nd Birthday Party

Lovin’ on Mommy

Lovin’ on Daddy

Riding the Ferris Wheel with Daddy

My Superhero on Halloween

Christmas Joy!

My handsome little man

Eli throwing balls to bubble puppy on the kindle

Eli saying “bubble guppy” while watching Bubble Guppies

 

Normal EEG

Eli went in to the hospital yesterday for a routine EEG, just over 4 months since his surgery.  He has been doing really well.  We haven’t seen any seizures at home so we were really hopeful that we would get good news.  He HATED being in the hospital.  Now that he is so much more aware of his environment, it was so much harder to put him through it this time.  He screamed the whole time they were placing his EEG leads and was just sedated and mopey the whole time we were there.  But it was absolutely worth it to hear that his EEG is looking great.  Dr. Goyal said that his temporal lobe has normal activity and there were no epileptic discharges. At the time of his resection, there was a lot of concern about his temporal lobe and I am so happy that we made the right decision to leave it alone and see if it would calm down once the frontal lobe lesion was gone. We are going to stay on the Keppra (anti-seizure medication) for at least a year, and we have to go back in another 6 months for another follow up EEG.  We are so relieved that his EEG has progressed so well. 

It has also been determined that he DOES NOT have Tuberous Sclerosis (YAY!).  They did genetic testing on his cortical tuber, and it was negative.  That along with the fact that he only had 1 tuber and absolutely no other findings suggestive of tuberous sclerosis means that he likely doesn’t have it.  The geneticist did not feel we need to do anymore testing or follow up!

As far as his development, that is going well too.  He has been getting weekly outpatient speech and occupational therapy over the summer and he has made such good progress.  He still isn’t talking much, but his interaction, play and communication is worlds better than it was.  Some of the new things he is doing over the past couple of months include: stacking blocks, putting things in and out of containers, beading string, playing with cars appropriately, attempting puzzles, putting hats and glasses on, scribbling with crayons and markers and playing ball back and forth.  He will now say “go” if he wants you to do something, “stop it” sometimes and will take our hands and pull us to what he wants.  We have heard the words bubble, ball, balloon, door, and cat at certain times but nothing consistent yet.  He will be starting the Bell Center here in Birmingham soon and will get 2 hours of therapy 4 days a week for the next year.  I can’t wait to see how much progress he can make.  Sometimes it is difficulty not knowing what the future holds for him, but we try to focus on all the progress he has make in just a couple of months.  Here he is today having a little post-hospital celebratory swim 🙂

Follow Up EEG!

We spent Memorial Day in the hospital again getting a follow up EEG.  If you remember, at the time they did Eli’s surgery, he still had a lot of abnormal spiking discharges coming from his temporal lobe.  They wanted to monitor that to see if it would get better over time.  And the good news is that his EEG looked sooooo much better!!!!  He no longer has any epileptic activity in his brain and there is no more spiking in his temporal lobe.  His temporal lobe does show some slowing so there is definitely some evolution going on.  His doctor thinks that this is just resolution of damage from that area being stimulated for so long by the frontal lobe lesion.  She thinks that it will eventually go back to normal, but we will have to monitor to see.  This is really the best news we could have hoped for!

We are going to go home today and will get another 24hr EEG in 3 months.  We meet with the geneticist tomorrow to see if she thinks he has Tuberous Sclerosis, so I will update with that information once we talk to her.  I have a lot of questions for her, so I will fill you in once we get those answered.

Thanks again for all the love, support, positive thoughts and prayers.  I really think my little man is on the mend and we are going to be able to put this all behind us soon.  He still has a lot of work to do to make all the new connections in his brain and catch up, but I know that he can do it!

Being cooped up in this small hospital room with an overactive toddler is really torture, so we are so happy to be going home!!!!

3 Weeks!!

Today is 3 weeks post surgery, and Eli continues to do amazing!  He has healed so quickly, his incision is barely noticeable any more.  And most importantly, he has not had any seizures.  We are still taking that one day at a time, but 3 weeks without any is really such a huge blessing.  He has made such huge strides in his development in just 3 short weeks.  He never had any problems with his physical development and he is back to climbing everything and running all over the place.  He seems much more steady now too since surgery.   We were so concerned about him falling and hitting his head, but he hasn’t fallen at all while walking or running which was a multiple time a day thing before surgery.  His only possible delays were in language and speech.   He is doing and saying so many new things.  These are all things he will do now that he didn’t before surgery: give high fives, wave bye-bye, say bye-bye to me when I leave in the morning, give kisses, really play with toys, throw a ball, follows our dogs around saying “woof-woof”, do the motions for “wheels on the bus”.  He is also obsessed with TV.  He never really paid much attention to it before.  It is like he is seeing cartoons for the first time and is obsessed with them.  He especially loves anything with dogs on it, he will giggle for 30 minutes straight watching paw patrol.  It will be interesting to see what his speech therapist and occupational therapist think next week.  He is also continuing to sleep through the night which is so great!  Unfortunately he new wake up time is 5-5:30am, but we will take it now that we are getting 8 hours of sleep a night.  I definitely heard “mama” once when he was trying to get my attention, but not consistent yet, but I know it is coming soon.  Overall, just really more than we could have ever hoped for.

We did get the pathology back on his lesion that was removed.  It came back consistent with a cortical tuber and not focal cortical dysplasia.  Cortical tubers are usually seen in a genetic condition called Tuberous Sclerosis Complex (TSC).  He had the genetic testing for this disease and it was negative, but I guess 10% of cases they don’t find the usual gene mutations.  That disease usually also has skin findings, cysts or tumors on the kidneys, eye findings, and multiple lesions in the brain, none of which he has.  So we don’t really know if he has TSC or not.  If he does, it is probably a mosaic form and is on the mild end of the spectrum.  Even if he did have it, most people with TSC have a normal life span and the majority have normal intelligence and lead normal lives.  He just has to be monitored annually for development of any of the complications and those have to be dealt with if they occur.   So not really what we wanted to hear, but things could really be so much worse.

We go back into the hospital on Memorial day for a 24hr EEG to see if his temporal lobe still have abnormal discharges and to see if there are any other parts of the brain that might be abnormal after the main seizure generator was removed.   I will update once we see how things are looking then!

Helping Daddy work in the kitchen yesterday

Going to get his kidney ultrasound on Tuesday

 

Doing really well at home!!

Sorry I haven’t posted since coming home.  It has been pretty busy at home chasing after little man trying to make sure he doesn’t take any hits to his head.  And, once we hit the bed, we have been out pretty quick every night with no computer time.  I have also been a little afraid to post because I didn’t want to jinx anything…

Eli has been doing so great! He threw up in the car on the way home Wednesday and several times Wednesday night, but it has been smooth sailing since then.  He is now eating everything and keeping it down.  He is so super smiley and in such a good mood.  He has been so snuggly and loving and giving kisses, which he didn’t do before surgery.  He has been really babbly and trying out some new words, although nothing too consistent yet.  He also seems to be more into playing with toys, and actually played with a ball appropriately today.  It is hard to put into words, but he does seem a little different.  There is a curiosity that wasn’t there before, and he just really seems to feel better.  If things continue to go this way, I think we are going to start seeing some really big developmental leaps soon.  He is also sleeping through the night, all the way to 6am everyday which is sooooo awesome!  His incision is healing really well.  He is still a little wobbly with his walking, but that is improving everyday.

Most importantly, we haven’t seen any seizures!  It has now been over a week without a seizure which is such a huge blessing.  Since this whole nightmare started we have never had this long a stretch without any seizures.  We are cautiously optimistic that this might have actually worked.  The problem is that I have read enough blogs of kids who have been through this to know that the seizures can return at any time… in a month, in 6 months, in 10 months, or never, you just never know.  So, we are trying to just enjoy this time, and hoping beyond hope that they don’t ever come back.

Incision, 8 days after surgery

 

Friday, 7 days after surgery, so happy to finally be able to eat!

 

Going Home!!

Eli has done a lot better today.  He is bright and smiley.  And, most importantly he hasn’t vomited today.  So we are going home!  I am pretty nervous about it, but I think he will do so much better at home.  So please pray that he has no more vomiting, his incision continues to heal well and that his seizure frequency at least improves if not stops all together.  We appreciate so much all the support, dinners since we have been here and all the prayers and love that have been sent his way over the past few days.  We will keep everyone posted on how he is doing.

Day 4 – Ups and Downs

Quick update tonight.  We have had visitors today and Evie spent a long time here this afternoon, so I haven’t  had much time to post.  Eli had a rough start to the day with projectile vomiting around 2am and then again around 6am.  His morning was pretty good and he was able to keep down some cheerios and apple juice. We gave him a little more for lunch and he vomited that all up.  The poor kid just can’t seem to keep a lot down 😦  He is back on IV fluids now.  They did a quick MRI this morning to make sure that there wasn’t any swelling or excessive fluid build up (hydrocephalus) and the MRI looked a lot better than his CT scan on Saturday.  Most of the air was gone and the swelling was improved.  No surprises which was good. We were hoping to go home tomorrow, but he needs to be able to keep his food down.  So I am guessing we will have at least one more night in the hospital.

The good news is that his mood and personality are getting so much better.  Every time he woke up today, he woke up with a smile.  We had probably as many smiles today as we had scowls which is a huge improvement!  He even giggled a couple of times and some smiles were big enough that we could see his dimples again.  Overall though, it is still pretty obvious that he doesn’t feel good, and he really just doesn’t tolerate being moved around much.

I think we are definitely making progress.  We really just need the vomiting to stop.

Here is a picture of him smiling at a video that Rob made of Evie for him ♥