New Blog

Unfortunately, my little guy’s battle with epilepsy is not over.  Even after 3 surgeries.  😦

I haven’t been blogging like I did when he was originally diagnosed, and I miss it.  I recently received a couple of really sweet emails from other parents of babies with I.S. who had found my blog. They shared some very kind words which encouraged me to start blogging again.  It’s quite therapeutic for me, and if I can help other families at the same time, well it’s a win-win.  When I started to sit down to write though, I realized why I hadn’t been keeping up with it.

Privacy.

Yes, I know, that’s a weird worry to have when you’re posting online for all the world to see. The difference now is that I realize that I still have hope that someday my little guy will grow up, go to school, graduate from college, get a job, have a girlfriend, marry etc.  I don’t know if or when any of these things will happen, but I still have hope that they will, and I don’t want someone (a future bully, a future boss, a future girlfriend, etc) to google him and inadvertently find out all this personal stuff about his rough start at life.  He is a warrior and should be immensely proud of himself for everything he has endured.  But he should be the one who chooses to share his story if and when he so chooses.

So, long story long, I want to continue blogging, but I want to do so in a way that can help other parents going through this but without using any personal details.

If you are another parent going through this battle with your child, please feel free to email me if you want to keep up with our story.  I’ve been on both ends, so I know from personal experience that these kinds of blogs are good for both the blogger and the reader.

If you are a friend or family member, please feel free to reach out to us with questions about how our little guy is doing.  It’s actually quite nice when people take the time to reach out, because so many of our friends and family don’t.  I know it’s because they don’t know what to say. But, for us, or anyone you know going through something like this, it really doesn’t matter WHAT you say, just that you check in once in a while.  It can be very lonely when people just stop talking to you because they don’t know what to say, and it’s already a pretty lonely situation.  But, I guess through this journey, we’ve learned who our real friends are (and to be honest, it has been a bit surprising).

Thanks to everyone who has followed Z’s story.

 

Surgical Update: 7+ weeks post-op

I am heartbroken.
My 4 year old had a resection of his left parietal lobe the Thursday before Thanksgiving.  His neurologist and neurosurgeon both commented about the dramatic difference in the subdural grid EEG from before the resection versus after. 

The pathology of the resected tissue showed a lesion, which everyone seemed pleased about, since it hadn’t showed on the MRI.

Everyone seemed confident they got it all. 

But, the seizures haven’t stopped. 

Actually, now they are more often than they were before. Today was the 3rd in 3 days. Before, it was always 5-10 days apart.  His right arm seems noticeably weak afterwards, which I never noticed before.

So, after putting my little guy through all of that… After putting our whole family through that, it’s just heartbreaking that it’s not better. Possibly worse?

So, we’re starting back on the M.A.D. (modified Atkins diet, a less restrictive for of the Keto medical diet) and may be upping the dose on one of the 3 AEDs (anti-epileptic drugs) he is still on.  

It makes me angry. My little guy doesn’t deserve any of this. 😢. I just don’t understand. We did all of this to help him. How can it possibly be getting worse?

Update

I know I haven’t updated this blog in a long time, but our little lovebug started having seizures again this past November.  It was hard to see him go through it again, and we have been trying everything to get them to stop.  Unfortunately, they haven’t.  He has now failed multiple medications and the medical (keto) diet, not to mention countless other changes we’ve made and tests we’ve done.  But, after multiple hospitalizations, we have discovered that he is a good candidate for surgery.

We met with the neurosurgeon yesterday for the first time.  I had been stressed about this appointment for weeks.  But, I actually felt a lot better after speaking to him.  The good news about it (without getting too technical) is that the surgery has a good chance of stopping all of the seizure activity, which stops his brain from being damaged, and also stops the seizures from eventually damaging other parts of his brain.  The other good news is that younger children are good candidates for this because their brains are able to fairly easily transfer the function from one side of the brain to the other.  It’s actually quite amazing (when you aren’t thinking about how it applies to your own child).

But, after the discussions with our neurologist and the neurosurgeon, we really feel like this is the best option… and really the only option for any kind of possible resolution.  Although we are confident in the decision, it still just sucks to have to choose a surgical resection for your child.  This isn’t like an appendectomy or even like repairing a hole in the heart.  It’s extreme.  But we are trying to give our little lovebug every chance for a long and happy life.

It will be a 2-part surgery, and the total hospital stay will likely be under 10 days, with a month-long recovery at home.  The surgery will take place in November, so please keep our little lovebug (and our family) in your thoughts and prayers.   Thanks.

An 11-year-old’s view

Sometimes I forget just how this IS journey with my son has affected my daughter, who is now 11.  But recently she wrote this article , and of course, it made me cry.  She has been such a tough little nut on this journey, and although I wish I could have protected her from all of it, that just wasn’t possible.

When my brother first started having seizures, I was 7, almost 8.  My mom saw something and we did not do anything the first time because we did not know what it was.  The second time became more serious.  I was playing with my friend, my mom hopped in a car and drove away.  I had no idea what was going on.

I kept asking what happened.  Truthfully I was so worried.  He was my only sibling and I did not want anything to happen to him.

Wean

We just met with Zane’s neurologist for a more in-depth conversation about weaning him off his last med, Topamax.     On this day before Thanksgiving,  I’m thankful we went. She was much more definitive about explaining that the side effects of the medication may be doing more harm than good, with respect to his development. So, we are now going to be progressing with the wean.

I’m still insanely nervous and will be looking into some new purchases that help detect seizures or at least a better monitor/camera for his room. But, I do feel better about it after our meeting.

It’s going to be a scary and exhausting few weeks till he’s weaned, and for months afterward, when the likelihood of seizures coming back is highest.  So please keep Zane in your thoughts and prayers!

Flyer for school / daycare

I just wanted to share a flyer I found online in case you want to use it as well. I’m going to print one to keep at home (for the babysitter) and one for his pre-school. Because I.S. babies are prone to developing other seizures, I just want to be sure his caregivers know what to look for and what to do. I’m also going to put our phone number and the doctor’s phone number on it, and I might even write a note to remind them to use their cell phone to video it, or if not video, at least keep an eye on the clock and time it.  Here’s hoping they NEVER have to refer to it, but they’ll have the info, just in case.  Thankfully our pre-school teacher has dealt with this before, so it makes me feel a little more confident that she’ll know how to handle it.  😉

(http://www.epilepsy.com/sites/core/files/atoms/files/FirstAid1.pdf)

Freaking out

Tomorrow Z goes for his next VEEG.  I’ve been hoping that if everything looks good, it might be his last. That would signify that this journey… this nightmare… would be over.  Well, at least this part of the journey (since therapy will continue indefinitely).

I remember feeling as if it might never be over. Ever.  But he has come so far. I can’t believe he is 2 years seizure free.  He has worked hard and he’s incredibly lucky to be where he is today.  He’s amazing. I want to be able to forget it all and move on and enjoy my little boy.

But, then I get news today that another little guy who had IS who has also been seizure free for 2 years just had the seizures return.  😦

I don’t even know how to process this except to cry for him and his family.

I know in my head it doesn’t do any good to worry.  I know in my head that just because it happened to someone else, that doesn’t mean it will happen to Z.  But sometimes my head and my heart aren’t on the same page. 

My heart is breaking for this little guy and his family, and I just can’t help but worry about the decisions we’re making for our little guy.

For now, we’ll proceed with the VEEG and just see what that tells us.  Then we’ll just have to have an in-depth conversation with his neurologist to see what she recommends before we move forward with the wean off his final medication.  

In case you’re wondering why we wouldn’t just keep him on the medication, I should just mention that you really shouldn’t ever medicate just for the sake of medicating. You wouldn’t take Dayquil or Advil every day for the rest of your life for no particular reason, right? Well, these aed’s (anti-epileptic drugs) are meant to alter your brain activity in some way. They all have side effects of some kind (some major, some minor).  They are pretty hard core.  The one he’s on now can affect appetite, and it commonly causes a brain fog, from what I’ve read from adults who take it. Imagine being a growing, developing boy who is learning at a crucial developmental age, all while in a deep brain fog.  He’s doing amazing as is, but is definitely still behind his peers.  So, I hate to medicate for no reason,  but I also don’t want to wean too soon.  Ugh.  I hope that his neurologist will help us make the right decision for him.

For now, I’m going to keep sending happy thoughts and prayers to the other family, and I’m going to try to make the best of it during our overnight stay in the hospital.  I’m going to TRY to avoid the emotional roller coaster and stay positive.  Wish us luck!

Word of the day: phenomenal

I took Zane’s teachers out to lunch to see how things are going.  My goal is to help Zane, help his teachers help Zane,  and make sure his teachers feel appreciated for all their help with Zane.    I know he is going to take more effort than the neuro-typical kids, and I just want to go above and beyond to make sure they know what a difference they are making in his life and how much that means to us.

I started out by explaining that we’ve heard the worst when it comes to Zane but that he always seems to prove everyone wrong.  I suppose I was mentally preparing myself for bad news while trying to explain to her that she could give it to me straight.

What she said brought tears to my eyes. But these were not the tears I’m used to having during these kinds of give-it-to-me-straight kinds of conversations.

She said “Zane had a phenomenal day”.

Not “good”. Not “great”. “Phenomenal”.

Think about Zane’s journey. Think about where he was a couple of years ago.   Then just take that in. “Phenomenal”.

She went on to explain that Zane has made huge strides in the last few weeks.  That’s not to say he’s caught up. He’s still behind. He still has tactile defensiveness and doesn’t want help doing art projects or washing his hands (anything hand over hand), and he doesn’t always follow directions.  But, he will sit, at least for part of circle time. He likes singing and dancing. He loves playing with trucks and trains. He loves the little playhouse on the playground.  He is starting to do what the other kids do. The separation anxiety has subsided.  He’s been doing better and better each day.  Then for a second time, she said that “today was phenomenal”.

My heart is smiling!

I bet you can guess my new favorite word!

Decisions Decisions

We’ve been grappling with decisions lately.  We decided to place Zane in the same preschool that my (neuro-typical) daughter attended.  (“Neuro-typical” is the term used to describe “normal” kids in the special needs community. I guess it sounds less offensive to those who are different).  So, even though he is delayed, has “special needs”, and is officially autistic, we put him in with the “neuro-typical” kids, and we’re hoping for the best.

Here’s our reasoning. If he were to take the M-CHAT (Modified CHecklist for Autism in Toddlers) today, I absolutely do not think he would be diagnosed. I didn’t really think he should have been diagnosed when he was though. He is behind, not necessarily autistic. But, then again, maybe I’m still in denial.  Time will tell.  With the scores he got on the test 6 months ago, he should have gotten the diagnosis, if no other factors were taken into account.  However, developmentally, he was about a year behind because of all the seizures and medications and the test was comparing him to “neuro-typical” kids the same actual age. 

From doing a lot of reading and research, I personally think he has sensory issues, but not autism.  A lot of autistic kids have sensory issues, but not all sensory kids have autism, in the same way that all squares are rectangles, but not all rectangles are squares.  There are different kinds of sensory issues, but he is without a doubt a sensory seeker. 

The point of all this is to find the best learning environment for him.  He is still on a waiting list for one on one ABA therapy for autistic kiddos. That might do wonders for him.  My concern though, is that unlike most autistic kids, he learns from other kids.  After my tour at the facility, I quickly realized that he would be one of the highest functioning kids there.  So, combine those two pieces of the puzzle and you might have a problem. He might end up learning undesirable behavior from the other kids.  Maybe. Maybe not.   If and when they finally have room for him, we’ll have to make the decision about how beneficial it will be for him.

For now, he’s made it through his first couple of weeks of preschool.  The hardest part (for me and him) is the separation. I’m basically always, ALWAYS, with him.  Besides that, he’s doing pretty well. Yes, it is harder for him than his typically developing peers. But, so far, he’s holding his own.   It has been a blessing having the same teacher that taught my oldest at his age.  We’ve known each other for 8 years now, we’re Facebook friends,  and I even did her daughter’s senior portraits. She knows his history and she’s (hopefully) able to tell me more than a stranger might.  I know that I feel so much more comfortable leaving him with her, so I’m sure he must feel that.

Even only two weeks in, his therapists have commented on all the positive changes.  He’s more attentive, he’s interacting more, and he’s going with them, without me (and for the most part, without tears).

So for now, I’m going to take that as a sign that we made the right decision. He’s still got a ways to go, but he’s making great progress!

Grief / Depression

I just read a post from a parent of a baby who is currently fighting I.S.  Her daughter is not getting better.  She mentioned praying that God could take her house, her car, ANYTHING, if He would just heal her daughter.

I think all of us have been there at some point or another, whether you have had a sick child or not.  But, I thought I would share this link to the stages of grief.  Once I saw it, it gave me a little perspective that I am not alone in feeling this way, and it let me know other stages to expect.  Sometimes, during a stage, I didn’t recognize it, but looking back, I can remember them all.
http://www.webmd.com/depression/guide/depression-grief

It took me a long time to work through all of the stages, and even still, sometimes I regress.   I’m sure it is even more difficult for those who’s child never recovers.  But, you WILL get through this.

Children’s Memorial Hermann Pediatric Epilepsy Reunion at the Houston Zoo (Fall 2013)

Here’s a little video produced at the Children’s Memorial Hermann Pediatric Epilepsy Reunion at the Houston Zoo this past fall (2013).  You can see Zane’s back at around 0:34, and his face at around 1:45.  🙂

 

Finding the right fit

Experience taught us to always get a second opinion. Not just for the opinion, but to find a doctor who will listen to you and work with you. But, I didn’t apply that to therapists.

For a while we received therapy from our state program, so we didn’t have a choice in therapists. Then when we recently went private, we just got the therapist assigned to us. We have now been doing speech therapy for over a year, nearly a year and a half, and have made very little progress. In fact, my little guy wouldn’t say ANYTHING during any of his 30-minute therapy sessions. But, after a quick chat with our neuro about the frustration of not having speech therapy covered by insurance, she made a call, wrote a letter and got us some coverage at the hospital’s rehabilitation center. I was appreciative, but it’s an hour drive each way, and I wasn’t sure it was going to be the best fit (being at a rehabilitation facility). But, after the initial evaluation with a pediatric speech pathologist… the same one who would actually treat my little guy, I was sold!

In one week, he has made more progress in speech than in the last year and a half… or really, since he was born. I really like that the sessions are an hour long, because he has time to warm up and work, versus just getting warmed up by the time the session is done. This therapist gets on the floor with him, she makes funny faces in the mirror with him, she crawls under the table with him, she helps him open and close doors, and she lets him run and play. He loves it. He babbles and tries to make new sounds the entire session, as well as at home! It’s AMAZING!  We have definitely found the right fit for him.

Now we’re going to get an OT and PT evaluation there.  The therapists can do a co-treat, which I’m really excited about.  We probably won’t do much PT, though.  He is taking gymnastics at a local gym, and the instructors there know his past and are doing great working with him.  He has made huge strides in his gross motor skills since starting the class.  This week, he held on to one of the parallel bars, and raised his legs to kick a stuffed monkey hanging in front of him.   He even held on to the rings, which are hard because they move independently.  These things are insignificant for most, but a big deal for him, since he really doesn’t use his hands much. It’s great therapy for a much better price tag!   😉

 

Feeling optimistic

We had several evaluations today. We saw a private company (rather than a state/federal funded one) for speech therapy and occupational therapy. Then we toured the autism facility where he will eventually get around 30 hours per week of communication / ABA therapy.

I don’t know why, after all our little guy had been through, but I was really dreading today. It sucks to meet someone and have them tell you where your child ranks developmentally. Especially considering how far behind our little man is in speech. I think his last evaluation, this last fall, he was ranked at just a 1-2 month level (at 18 months). But, he’s made slow and steady progress in speech. He’s still at least a year behind, but has made progress! So, that was good to hear! It also sucks to visit an autism facility and see the worst cases, not knowing what the future holds. But, I guess none of us know what the future holds. Plus, I actually liked the facility and the people, and it will be awesome to have one-on-one help geared specifically to Z.

We made it through the day, and now that it’s over, I actually feel relieved and a bit optimistic that we have a new plan. I think I tend to flounder a bit when we don’t have a plan. It still has a few kinks, it will take some time to implement, and it’s going to be expensive, but we have a plan. Phew!

“Might”

After 2 years, I had to contact the genetic counselor (who we consulted during our pregnancy). She is the one who, after an amniocentisis, basically told us outright that we should abort.

Because there were SOME cells (aka mosaicism) on chromosome 1 that showed an additional isochromosome for the long arm, he MIGHT be mentally retarded, he MIGHT have heart defects, he MIGHT have maldevelopment, he MIGHT have a cleft palate, he MIGHT have had small eyes, he MIGHT have seizures. That’s a lot of MIGHTS. They only had three cases that were similar, but not the same. In those three cases, all three babies died before the age of 3 months. So, I guess her thought was that we should not put ourselves through that. She had no concerns about ending a life because of the “Mights”.

We did go on to have a cordocentesis (where they draw blood from the umbilical cord, in-utero, rather than use amniotic fluid). Those results came back perfect.

Even though one test was fine, the results of the amnio lingered, and the entire rest of the pregnancy was filled with stress, fear and doubt. Looking back, we really should not have even gotten the test, as the results would not have changed our decision. We may not be extremely religious, but we have morals and strict beliefs, including the fact that life begins at conception. So, for us, aborting would be the same as murder. I don’t care about the word “viable”. My little guy had a heartbeat, he had a brain, he had arms, legs, fingers and toes. He could swallow and kick. That, my friends, is LIFE. (Please, there is no need to make any nasty comments if you don’t agree with me, as this is not the time or place, and you aren’t going to change my mind).

I still hold a bit of a grudge against the woman who told us to abort our beloved little Zane. Maybe he isn’t medically perfect, but he is absolutely PERFECT to us. I absolutely, without a doubt, can not imagine my life without him. He is an amazing little soul!

Chatting with the genetic counselor via email today brought back a lot of negative memories. I just needed the records, but she asked some questions. I wish I could tell her he went on to be completely healthy, and that she was wrong. But, alas, he does have some medical issues. Yes, he did go on to have seizures, and yes, he is developmentally behind as a result. But, I wish I could explain to her that those things do not make me wish he was not born. There has never been a moment that I wished I had made a different decision. He is a person. He is more than the list of diagnoses on a piece of paper. He is AMAZING.

She MIGHT want to eat her words.

I’m on several forums with other I.S. babies, and have “met” some interesting people from around the world.  The forums I seem to frequent are those on facebook, simply because the posts show up in my feed whenever I log in.  Tonight I clicked one, then a link, then another link, and then I ran across this article called Infantile Spasms by Numbers:  http://blog.timesunion.com/austinbenconnor/2008/09/30/infantile-spasms-by-numbers/

As you can guess, it delved into all of the statistics about I.S.  I haven’t looked into the numbers and I haven’t done any of the math myself.  But, this is the quote that stuck out at me about kids who have had I.S.:

Overall mortality before age 18 is then about 12%- one in eight.

One more time, and in bold. One in Eight.

Look around your town, your supermarket, your place of work. Would you notice one in eight people gone?

 

I guess it just struck a cord with me after the death of our speech therapist/friend’s son.    I’m just having a hard time getting past this.  We were already told once that the only 3 cases like his (but not exactly like his) had deaths in-utero during the 3rd trimester, at 5 days old and at 3 months.  But our little guy was born healthy and perfect.  Each time we got past one of those timelines, it was a sigh of relief.  Then, after he was past 3 months and was still healthy and perfect, we celebrated and we thought that the doctors had been wrong, or the test had been wrong, because our son was healthy.  Then a month and a half later, the spasms started.

I’ve probably seen nearly 10,000 spasms.  I really hate that word too.  Spasms.  It sounds so benign.  But, it’s like having a hundred tiny little seizures in a day, just over and over and over.  It doesn’t matter if they have one big one or a hundred tiny ones, no one should have to go through that.  Nor should any parent have to watch their child go through that.  Watching each spasm was like watching my heart break in a thousand tiny pieces.  Just the thought of it brings back so much of my pain.  Thankfully, he doesn’t remember.

For about 8 months (5 in-utero and 3 after birth) we worried about death.  Then we had a month and a half of wonderful time with our healthy son before all the worry came back.  Then we did everything we possibly could to help him, and thankfully, he was one of the lucky ones.  But, still I worry that the seizures will come back.  I still worry about death.  I know my son is doing well.  I want to enjoy it.  I try to.  We play.  We sing.  We dance.  He’s doing amazing.  But, the doctors are all sure to tell me that chances are he will have other seizures as time goes on.  The longer he goes without is good, but by the end of the year, they will probably take him off all meds.  It’s terrifying.  He’ll be about 2 1/2.  Between the ages of 2 and 6, many I.S. kids go on to get a similar type of uncontrollable seizure type called Lennox-Gastaut.

I want to pretend everything is okay.  It seems okay.  But, every time things start to settle down, something happens.  I guess I’m just getting used to waiting for the next thing.  I’m tired of the worry.  It’s exhausting.  But, I doubt it will ever go away.  

 

 

Sharing tears

This morning we saw Zane’s speech therapist, who we haven’t seen in about a month.  The last scheduled appointment was on a Tuesday when the weather forecast was predicting that the roads were going to be really bad.  So, I texted her the night before to see if she wanted to go ahead and reschedule.  She texted me back and told me that someone from the agency would be calling me.  Then she told me why.  Her oldest son had passed away.

I was in shock.  I knew he had epilepsy. We had bonded over talks about our sons, seizures, and the fact that they had been seeing the same neurologist we see, but they had been going to her for the last 14 years.  But, I never expected this kind of news.

He had just turned 21.

His seizures were never quite controlled, not long term.  I remember her telling me how hard it was as he became a teenager who wanted independence, but he always needed someone around.  Just think about how hard it would be to be that age and always have your mom right there.  But that’s what she had to do.

In January, he had gone to the kitchen to make a snack, when she heard a loud noise.  She called for him, but no answer.  She rushed to the kitchen and found him on the floor, in a puddle of blood.  She called 911, and he was rushed to the hospital, but he was okay.  But he had hit his head.

She took a week off to take care of him and get someone who could be there with him while she worked.  Everything else was normal.  Then, the morning she was supposed to head back to work, when she went to get him up, he was gone.  They think that he had a seizure in his sleep. 

It gets worse. Apparently whenever a person dies in your home, no matter the medical condition or circumstances, the police have to treat it as a homicide until they rule it out.  So, she was told she could not go into his room as the paramedics were there performing CPR, and the police stayed there in her home to investigate as she and her husband went to the hospital.

It was there that they took her into a room and told her he was gone.

As she told me this story, I could not help but tear up.  Then we just stood there with tears running down our faces.  Even though our boys are different ages, with different types of epilepsy, she said she knew I would understand.  I do. 

Seizures suck.

Feeling Thankful

A few days ago, with Zane’s 2nd birthday nearing, I started feeling the need to print some of our pictures to put in Zane’s baby book.   Looking through all those memories triggered a letter to our neurologist, and I thought I would share it here as well.

Dr. Von Allmen,

Tomorrow, Zane turns two. I can’t even believe it. Two! Our daughter is ten, so I know how fast time flies. But, it’s different this time. As I try to put pictures in his baby book, I feel so much sadness. Not only has time flown by, but this time we were robbed of so many precious memories. We missed out on so many smiles, so many giggles, so many splashes in the tub. We missed out on spaghetti sauce faces and dropped toys just to see how gravity worked. Instead of cute videos of silly moments, we have videos of seizures for documentation. Instead of pictures of new milestones, we have pictures of EEG’s in the hospital. We missed out on so many silly little things that most parents take for granted.

When he should have been gaining new milestones each day, we watched the milestones he had already achieved fade until he had none. None. At eight months old, he was like a newborn. But, his body had grown, so taking him up and down the stairs or giving him a bath was like holding a twenty-pound limp noodle. Our sweet baby boy, once healthy and thriving, could not even hold up his own head. He was expressionless, and nearly motionless, except for spasm after spasm. He was gone. Our son was gone.

After having several experiences with different teams of neurologists (no less than 6), plus countless residents, at a well known hospital, you would think that someone would have gotten the diagnosis correct. Or, at the very least, that one of them would have scheduled a longer EEG. You would think that one of them would have listened to us about how the seizures were changing. You would think that one of them would have watched our short video clip. But up until then, we weren’t so lucky.

But, then we found you. You didn’t even know us yet, but you took a quick moment to watch a video clip that had been emailed to a nurse’s phone and handed to you by a resident. (Our first neurologist wouldn’t even watch the video during our scheduled appointment). You had us in within two days for Zane’s first 23-hour EEG. Sadly, it all confirmed my fear that it was, in fact, Infantile Spasms. But, you moved quickly to get us in, get it diagnosed and start an appropriate treatment. Zane’s path wasn’t an easy one, but thankfully, we found our miracle. (I never would have thought I could have been so happy to give my own infant shots in the leg each day for months, at thousands of dollars each. But, once it started to work, I was)!

Within a few weeks, we started to see his smile come back, then his giggle. We started to see milestones he had lost return. Then we saw new ones. Now we have have cute videos of laughter and pictures of that spaghetti stained face. With lots of therapy, we helped him learn to crawl, learn to eat, and learn to walk. Now he’s jumping, dancing climbing and nearly running. He is becoming quite the toddler, testing limits with a smirk on his face and a twinkle in his eye.

I know from online forums that many babies with I.S. don’t have the same outcome. So, I do know that some part of this may be luck. Yes, Zane is lucky. But, part of his luck was finding you to be his neurologist.

So, from the bottom of my heart, I thank you. Thank you for listening to us, thank you for being kind and most of all, thank you for helping our son. He would not be where he is today without you and your wonderful team.

With much appreciation,
Holly Guillaume

Blessed

Last week, my husband and 10-year-old daughter were both sick with a head cold and cough.  This week, Zane and I got it.  Zane was a little warm yesterday, so we alternated ibuprofen and acetaminophen, which seemed to do the trick.  Normally, we don’t even treat a mild fever, because we’re believers in the way your body is designed to fight off a cold with a fever.  If you treat the fever, then you take away your body’s ability to fight.  But, with Zane, it’s different.  Fever can itself cause seizures in some people, called febrile seizures.  While febrile seizures are not related to epilepsy, I certainly don’t want to take the chance that one would re-trigger the I.S.  I’m not sure if that would or could happen.  Probably not, though I don’t think anyone can say that definitively.  But, I don’t want to chance it.  So, for him, we treat even mild fever.

Last night he got a dose of medicine before his bed time.  I intentionally stayed up until midnight to make sure he got another dose.  Getting woken up in the middle of the night and having medicine squirted into his mouth did not go over very well.  But, I felt better knowing he got a night-time dose.  Then I put myself to bed, after giving myself another dose.  This morning, when my husband got up to go to work at 5:30, I asked if he would check on Zane, which he did.  He brought him to my bed and laid him down.  Still groggy, I reached over to touch him and he was burning up.  Boy, if that doesn’t wake a mom up fast, I don’t know what will!  I immediately gave him another dose of medicine and started trying to cool him with a washcloth.  Again, that did not go over well.  You know how when you have a fever, you actually feel cold, like you can’t get enough blankets on.  Well, that’s how he was.  His little knees were shaking and his teeth were chattering, like he had just gotten out of a polar bear plunge.  Poor little guy.  His under-arm temperature was 102.3, which is equivalent to 103.3 oral.  That’s a scary range for any mom, but especially to a mom of a little one with epilepsy.  I kept trying to cool him off, but an hour later, the fever had barely gone down, so I alternated medicines and gave him another dose.  Thirty minutes later, it still hadn’t come down.  So, I got my daughter out of bed early, and jumped in the car.  I knew we were going to be right smack dab in the middle of rush hour, and we’re about 35 miles away, which could easily be an hour and a half at rush hour.  I decided to just start driving then, instead of waiting any longer and getting stuck in even more traffic.

Then, at a stop light, hanging my head low in shame, I texted our pediatrician.  We had an 11:00 appointment already scheduled.  But, when you have a feverish little one, that seems like forever.  When my daughter was little, I would have made due and waited until the appointment, and everything would have been fine.  Things probably would have been fine today too, but I was scared.

This is where the title of my post comes in.  “Blessed”.  Yes, we have been blessed in finding the most incredible people during Zane’s journey.  Seriously, INCREDIBLE people.

Dr. Kelly Olson (of Bootin and Savrick Pediatricks) is simply amazing.  Yes, I could have gone to urgent care or even the E.R., but then I would have had to explain Zane’s condition, and I guarantee I still would have gotten an eye roll or two.  Many doctors aren’t familiar with Infantile Spasms and just how scary it is, and we’ve found a lot of doctors are too arrogant to actually listen to a parent and their concerns.  But, once in a while you find doctors like Dr. Olson, who go above and beyond the call of duty.  Dr. Olson met us at the office before it even opened.  Seriously, before it opened.  The main lobby was closed, the lights were out, there were no office staff and just one nurse.  But, she got us in, got him checked out and gave him a prescription.  She even gave my daughter a quick look to make sure she was doing well since she had been sick last week.  What doctor does that?  Not many.  But ours did.  She is truly a special person and I am so incredibly thankful!

Thank you Dr. Olson!  You’re the best!

Besides being blessed with incredible doctors, I’m also feeling blessed that the high fever has not caused Zane any more trouble than any other toddler.  For over a year now, fever has been my biggest worry.  He held it off pretty well, but I knew it would eventually rear it’s ugly head.  Today was that day.  But, it’s down now and he has started on antibiotics.  Phew.  Now I can breath a sigh of relief!  Hopefully he’ll be feeling better by tomorrow, which is his 2nd birthday!  🙂

Happy Heart

https://www.youtube.com/watch?v=a44d-5Yezbw&feature=youtube_gdata_player

This makes my heart happy!   This is my little guy on the right and Savannah on the left.  After an I. S. diagnosis in the first few months of life, these two have been through more than most adults I know. But they are thriving. What amazing little souls!

a new diagnosis

Today we got an official autism diagnosis by a not-so-great doctor who specializes in autism. (Actually, she’s probably a fine doctor, but just has absolutely NO bedside manners).

It shouldn’t be a shock (because I know that it is typical for I.S. babies).  But it was.  Partially because he’s on the young side for an autism diagnosis, but also because I thought he had been doing better and doing less of the things that were concerning me a few months ago when he took the M-CHAT at his 18-month pediatric visit.

After about 1 1/2 hours, where she was mostly glued to her computer and typing and not actually interacting, she said, point blank “I have no doubt that your son has autism”.  Now, I realize that when you read that, it just sounds like she’s a straight-shooter.  But, straight-shooters are fine.  You would have to hear her voice and her tone.  But that’s just how she is.  She barked at her employees for everything, and I really don’t think Zane knew how to take her either.  He interacted fine with another friendly male doctor.  It’s strange to me that this particular woman chose a profession where she deals with small children on a day to day basis, because she certainly wasn’t warm and fuzzy.

After the announcement of the diagnosis, she then overwhelmed me by telling me that basically all the therapies we’re getting through ECI are crap (not her exact words, but close) and that we need to be doing 30 hours a week (yes, 30 hours per WEEK) of intensive communication therapy, plus MORE PT, MORE OT, etc. She wants more genetic testing, another sedated MRI, a BAER hearing test, all the records from any doctor he’s ever seen (including pre-natal), etc.

I was a bit of a mess when I left the office.  Not a tearful mess or anything… I guess because even if this sucks, we’ve been through worse.  But, I was just overwhelmed and frustrated.  Thankfully one of the Fellows that was observing the evaluation was the same one who had been with us in the hospital when we started ACTH, as well as in the office with Dr. Von Allmen.  We have had conversations about Dr. Von Allmen and her approach, and also personal conversations (he and his wife were expecting a baby who is now almost a year old)!  So, he knows me a bit and knows how much I like Dr. Von Allmen.  He stepped out of the room to walk me to the front and he explained that this particular doctor is a bit old-school and that although she’s a bit gruff, she’s really good.  I am thankful we knew him and that he took the time to tell me that.  However, I’m still not sure I’m going to continue with her for the long haul.  I’m letting it process before I decide.

After losing most of my clients during all of the IS treatments, I was really itching to start working again.  But after a few setbacks, the thought of having to start over and re-build my business from scratch was frustating.  So, I actually went on to Monster.com and found what I thought would be a perfect job (it combined engineering, proposal writing, photoshop and design).  I applied and heard back right away, but after finding out that the job was located 40 miles away, each way, via interstate, I opted not to go any further with interviews.  Boy am I glad now!  I already feel like we are doing a lot of therapy, so an additional 30 hours per week sounds crazy, and that’s not including travel time.  But how do you balance the time commitment of these therapies with the cost of these therapies, since most will be out of pocket?  I think we’re going to have to re-evaluate our budget.  Still, I’m thankful that I’m able to give him a lot of one-on-one attention that just wouldn’t happen if I were working full time.

For now, I’m beginning the process of looking into everything the doctor mentioned and looking at all of the materials she gave me, which is a pretty thick stack.  Tomorrow I’ll get Zane on a 12-18 month waiting list for a particular therapy group for autistic kids, and delve a little deeper into to intricacies of autism.  A trip to Barnes and Noble might be in order, which Zane will love since he likes books!

I guess we’ll figure out a way to get past this little roadblock, but it just stinks that my little man has to endure all of this after everything he’s already been through.