Lamictal Update

So far, so good.  Eliah's rash is still there, but starting to go away.  He was extremely irritable yesterday, but that has now subsided.  It may have been due to a headache from coming off the medicine, so I treated him with Tylenol.

That's the good news.  Now here's the bad.  As I was driving home from dropping Natalie off to school, Eliah napped.  After I stopped to take a couple scenic pictures, I looked back and Eliah was having a strong seizure.  He looked like he was breathing like a fish out of water, and his lips quickly turned blue.  I stopped the car in the middle turn lane, put it park, and reached back to get the oxygen.  As I put my hand on his cheek and told him it would be okay, he came around.  He quickly went back to sleep and slept the rest of the morning.  (frustrated sigh....)

We are almost out of the woods with Lamictal, and we are continuing our journey with seizures.  At least Eliah has been happy all day, and even gave himself a close inspection of his nose and throat to make sure he was all clear. 

Google- Blessing or Curse?

Ever since Eliah was a baby, and we were in the hospital for his first seizure, I have used the internet as a tool to research medical information.  When it comes to my child, there is no such thing as too much information.  I am like a sponge.  I want to know all the possibilities, good or bad, all the tests, and all the treatments.  This is the way I cope.

For years, other people have told me, "Don't Google anything, you'll just scare yourself".  But it's my responsibility as Eliah's mother to know as much as possible.  How else will I know what to look for or what questions to ask.  Yes, I run across a lot of information that makes me panic.  And yes, it would be easier to just put the computer down and tell myself everything will be fine.  Then there are days like yesterday, where Google may have saved Eliah's life.

Eliah has been taking his new medication, Lamictal, for twelve days now.  I have noticed some very good things, like laughing and more focus on babbling, and I have also noticed some small side effects.  And when I picked him up from Kelley's house Monday morning, I noticed a small rash around Eliah's mouth.  Kelley mentioned that he had been battling this eczema type rash over the weekend.  He's had it before, so it wasn't a big deal; just lotion him and wait for it to go away.

The rash didn't go away; it seemed to spread. By late last night, Tuesday night, I started to remember all the information I had read about Eliah's new medication.  Lamictal can cause very serious, life-threatening rashes.  This didn't seem life-threatening, but I pulled out the computer and started to Google photos of Lamictal rashes.  I found one that looked identical to Eliah's, and I immediately called the doctor. 

The Neurologist wanted to see Eliah first thing this morning, before I gave him another dose of Lamictal.  And after close inspection of Eliah's body, the doctor found the rash in several places, and confirmed that Eliah is having a reaction to the medication.  The doctor even said that if Eliah had taken one more day of medication, it could have put him past the point of no return. Now, herein lies the problem....

Lamictal is extremely dangerous, but unfortunately, was kind of a last resort seizure medication.  It is not even approved to be used in children under the age of 16 because of the severity of the reactions.  The rash is more likely to become Stevens Johnson Syndrome in children, 1 in 50 in fact.  If you have never seen what SJS can do, please Google it.  It's scary, painful and can lead to permanent deformity or death.  From what I've read, SJS is already in the body before someone develops any rash.

So where we are now is this, Eliah has several small rashes, a cough (another symptom of SJS), and has discontinued use of Lamictal.  The medication stays in the body for approximately five days.  During that time, his rashes will most likely get worse before they get better, and may turn into this life-threatening syndrome.  We have to watch carefully for fever, as that is another symptom of SJS.  I have to call the Neurologist every morning to give him an update on Eliah's condition.  And as far as managing the seizures, we are two steps back. 

All we can do now is wait....

Cardiologist, EKG, and Echo Cardiogram

Eliah had his appointment with the Cardiologist today, where they weighed, measured, and tested him.  He's 44.8 pounds, 44 inches tall, and his heart tested just fine. Thank goodness!  He still has his heart defect (Patent Ductus Arteriosis), but it's tiny and does not hinder his heart function at all.  Also, despite his high pressure, the walls of his heart have not thickened. 

Yahoo!

I Prefer Oblivion

I think I've been in denial about Eliah's condition for the past four and a half years.  Even when he was in the hospital for his brain bleeds, it never crossed my mind (at the time) that he would die.  I knew that other people had died with the same condition, but it never occurred to me that my son could pass from such a thing. 

I think I'm finally beginning (JUST beginning) to realize how critical Eliah's condition can be. When we talked with the Neurologist, he discussed the fact that Eliah could die from a seizure.  His autonomic nervous system could give out, and he could stop breathing.  The doctor talked about how putting a oxygen monitor on him at night would not prevent a particular end result.  And we sat there and nodded and acted like we understood that he really meant death. 

 It wasn't from truly comprehending what is medically going on with him, but rather seeing it black and white that makes it sink in.  It's all in the writing in front of me.  I received his discharge papers from his Occupational Therapist yesterday afternoon.

The medical director at the Child Development Center spoke with Eliah's Neurologist, and doctor said that yes, Eliah could die at therapy.  He is too fragile to go to therapy.  It's hard to understand this when you look at him.  He doesn't look sick, just delayed.  He's strong and happy, how could be too fragile? 

But I get now.  I GET IT.  He could die any given moment of any given day.  Any one of his six seizures yesterday could have been "the one". 

So what do you do with that information?  You give him all the love you can.  You take lots of photos and videos.  And you do what you can to make great memories for him, and for the whole family.

We are looking forward to Make-A-Wish creating his wish this coming spring.  And through a friend's suggestion, Eliah will be getting a Dream Cake for his 5th Birthday through Icing Smiles.  They sent me an email last night, saying that Eliah met the qualifications and will be receiving a cake.  Here's their link on FB if you want to see what it's about.  https://www.facebook.com/#!/icingsmiles

Now I am going to go love my children. 

The Ultimate Fighter

I could talk about the life lessons Eliah teaches me daily.  I could talk about how he has changed my life in ways I could never imagine.  I could talk about how Eliah awakens each morning with a big smile, despite the health issues he's having.  But it's been said before, by me, and by other parents of special needs children.  What it comes down to is this....  Eliah is one tough kid. 

The past couple days have been very difficult.  He had a total of ten seizures yesterday, and many in the previous days.  Sometimes he stops breathing and his lips turn blue.  The look in his eyes is terrifying, and I have no idea if he feels as scared as he looks. 

We met with the Neurologist to discuss a new medication to try, Lamictal.  It's not normally prescribed for children, and can have very serious and potentially fatal results.  We have to watch him very carefully for any reactions.  After his first dose last night, he is barely able to keep his head up this morning.  He seems comatose.  I hope that improves.  This seems to be a last resort type drug.

The doctor mentioned that we could try an Epilepsy Center to treat him, but it's highly unlikely that they would ever consider brain surgery to fix Eliah's seizures.  Not only because of his Hemophilia, but because there are so many damaged parts to his brain, they wouldn't know where to begin. 

In addition, Eliah's Sympathetic Nervous System is completely wonky (yes, that's a technical term).  The SNS controls the functions of the body like blood pressure, sweating, digestion, temperature and other involuntary actions.  Sometimes, when Eliah's SNS is overactive, it's like being on an adrenaline high all the time.  His blood pressure is out of control, upwards of 160 for Systolic pressure (the force that blood exerts on the artery walls as the heart contracts to pump out the blood).  His hands and feet sweat, his eyes dilate, and he is super sensitive and reactive to his surroundings. 

Then, without warning, he drops out of high gear and goes the other way.  His temperature can be 102 one minute, then within 15 minutes, can be down to 97.  His blood pressure does the same thing.  His body just can't maintain control, and we suspect this is one of the parts of his brain that is damaged.  There is no known way to fix it at this point, not even with stem cell therapy, so we treat the symptoms as we can.

We also met with the Nephrologist last week (blood pressure doctor).  He agrees that Eliah's blood pressure is out of control.  Most of the time it's way too high.  But there are also times that it's normal.  In addition, and I've mentioned this in the past, Eliah's blood pressure is not proportionate.  Meaning, the pressure of what pumps out of his heart (systolic) is much higher than what pumps in to his heart (diastolic).  It's like Eliah's heart cannot keep up with the amount of pressure.  The doctor cannot treat him for high blood pressure, because it will make his heart too weak. 

So, the next step at this point is to head to the Cardiologist.  We need to find out if his heart is getting enlarged from all the work it's performing.  If it's becoming too muscular, we have to treat for high blood pressure.  If it's okay, we just leave it alone and hope he does well.  He is scheduled to have an Echo cardiogram on Tuesday. 

In the meantime, Make-A-Wish called to schedule a photo shoot next weekend with Eliah.  Apparently, Applebee's sponsors them, and Eliah will be assigned his own restaurant within the area, where he will be featured on the menu (not to be eaten).  I better get to fixing his special needs haircut. 

Not to be outdone with Eliah's ongoing fight, Natalie has become a shining star.  She is breezing through the 2nd grade, testing in math and reading at a 5th grade level. She reads about two or three 300 page books a week in addition to her advanced reading books at school. Because of her test results, she has been invited to the Gifted and Talented school in the area.  Only 75 children in the county per grade are invited to go to this school, and we are scheduled to tour the school in just a few hours. 

I'm proud.  I'm proud that no matter what my children are given, they smile, they laugh.  I'm proud that they don't just cope, they fight and work for a better life.