Our Days with Epilepsy & Asthma

Two years ago, my three big kids got up in the mornings & brushed their teeth.  
All our bathroom had in it was Children's Tylenol and Minion toothpaste.  

 Now our bathroom shelf looks like this:

And the wall looks like this:

In October of 2016, Logan had a grand mal seizure during lunch at school. He was eight years old.  When a child has one seizure they are highly unlikely to have another, so following a normal EEG, we let it go, hoping it was a one time event.  Then in January of 2017, home during a snow day, he had another grand mal seizure.  Following this second seizure we had an MRI done as well as another EEG.  The MRI showed us that he has a Chiari malformation, but that is unrelated to seizures.  In adulthood it can cause headaches and other symptoms, but it can also be asymptomatic and his is quite minimal.  His EEG, however, was abnormal and showed some waves typical of someone with epilepsy.  He was officially diagnosed and placed on Oxcarbazepine, 450mg, 2x daily.  He was incredibly sleepy at first, but as his body got used to metabolizing the medication, he did better with it.  
Ten months passed with no seizures and we were ecstatic. We figured he had the same kind of epilepsy Josh (his dad) has and that the medication was controlling it.  But then in October 2017 he "passed out" in the bathroom, bashing his face on the counter and scaring the heck out of me.  We assumed it was actually a seizure (not passing out, as he called it), though no one was there to witness it, and increased his meds to 600mg 2x a day.  
Then in December 2017 his seizures began to change.  We were at my sister's house and he had a strange, absent type seizure with some lip smacking.  Then again in February he had two more absent seizures (where his body did not convulse, his eyes were open, but he was not in his right mind & was unable to respond to us.)
Spring of 2017 brought us back to the neurologist for our yearly check up and yet another abnormal EEG.  This one showed both generalized and focal seizures (meaning that Logan has seizures that start in specific areas of the brain, as well as seizures that start in an unknown area and effect the whole brain).  Before he only had focal seizures (seizures that start in specific areas of the brain).  Why his seizures have changed, we may never know.  But they have.  
So his doctor suggested we change his medication.  We started him on Lamotrigine, on a very slow titration schedule.  He started at 25 mg and we watched for any reaction (specifically a really scary rash that can occur) and slowly over 12 weeks we built him up to 100mg.  Throughout May and June we found Logan having many absent seizures after being physically active (jumping on the trampoline, riding bikes, running, riding his scooter).  The good thing is that these new seizures are short (typically less than 30 seconds) and they are almost always preceded by an aura (or sense that they are coming).  Sometimes he gets a telltale headache, other times it's just a bad feeling or pain in his nose that lets him know one is coming on.
Occasionally he can force them away, but only for a short period of time.  Eventually he has to let them come.  He said stress is also sometimes a factor, in addition to being out of breath from physical activity.  Despite being at the full 100mg dose the last two weeks, Logan has continued to have seizures, so his doctor recently suggested we up his dose to 150mg, so this week we are increasing his night dose and next week we will increase his morning dose, in hopes it will stop these seizures.  Once the seizures stop, then we will slowly wean him off the Oxcarbazepine and he will remain on the Lamotrigine alone, as it can control both kinds of seizures, whereas the Oxcarbazepine only controls the focal seizures and could be causing more of these new absence seizures we are seeing.

Logan's AM meds
Logan's PM meds
Everything I need to know about dealing with Epilepsy in Childhood.
This book is amazing & offers so much peace.
I record all Logan's seizures in the back of the Seizures book...
I write dates, details and times for the doctor.
I also include all testing he's done & epilepsy medication he's taken or increased.
Yesterday we went to the water park as a family for the first time this summer and while we were there, Logan had a seizure in the pool.  We had taken into account that seizures would be part of what we'd be dealing with this summer and the twins were prepared to have a little less freedom this summer than last summer because of it.  So Josh was with them when it happened.  Jack was nearest and Logan reached out and put his hands on Jack's shoulders.  Jack knew instinctively what was happening.  Logan started having repetitive mouth movements and Jack used his one free hand (the other was helping keep Logan up) to signal Josh.  I was in the kiddie pool with Carly & Wyatt, but Josh said that this seizure was quite different in that it lasted longer than his previous ones have recently, and also, when it was over, he took much longer to recover.  He could not tell Josh where they were, who his friends were (he had classmates in the pool with him) or what they were doing (swimming).  He was, eventually, able to tell Josh who he was ("umm, dad") after a few seconds thinking.  But he was very pale and suffered a headache most of the afternoon following the seizure.

I hate that he is still having the seizures, that the medication has yet to stop them.  But I am determined to make the summer amazing regardless of what his epilepsy throws at us.  If that means Josh and I have to divide and conquer at the pool, then that's what we will do.  Whatever it takes to keep him safe and make sure he's having fun.

He has a follow up appointment with the neurologist next week on Wednesday and I have so many questions for her:
  • Where are Logan's seizures located (the ones that aren't generalized)?
  • Why does he have two kinds of seizures?
  • How many kids go from having tonic clonic (grand mal) seizures to having absence seizures?
  • Should we do another MRI?
  • Are complex partial seizures (absence seizures) more difficult to treat? Why?
  • Do further hits to the head/injuries worsen his epilepsy?
  • His seizures often seem precipitated by physical activity & nose pain.  Should we therefore limit his physical activity? Is this a common thing?
  • Were those the only seizure activities we saw on his EEG from April? How much activity was there?
  • Is generalized epilepsy the same as generalized seizure?
  • Does he need a calcium or magnesium supplement?
  • Is it time to start weaning off of oxcarbazepine?
  • At what point do we give up with Lamotrigine & try another medication?

So that's where we're at with Logan's seizures & epilepsy currently. 
He's had 22 seizures as of yesterday, and I'm just here along for the ride, monitoring what I can, praying a lot and being the best support I can be for him.  Listening a lot, agreeing that it sucks, and being an advocate for him where I can be, fighting for what I think he needs (different tests, med increases, etc.) and making sure he feels heard.  It's been a really  hard few months with his new type of seizures being uncontrolled, but I really do remain hopeful that we will find something that works for him.  We've only tried one medication and there are so many on the market now that we have access to and can try if this one doesn't work out.

About a year after Logan was diagnosed with epilepsy, Wyatt got really sick after a cold and was having trouble breathing.  He ended up being transferred from our small town to a children's hospital two hours away so he could be cared for in the Pediatric Intensive Care Unit.
Wyatt has always had Reactive Airway Disease (basically he has a hard time with coughs following colds) and has often needed his nebulizer following illnesses.  But this time, he was retractive breathing which was terrifying to witness, and I am so grateful I knew something wasn't right and got him in right away.
Following his five day PICU stay, he was diagnosed with asthma and put on an asthma medication regimen.

In the morning he takes a multivitmin to help boost his immune system, and following his continual illness this spring, he has also been put on loratadine to help with allergies as well as flonase (a nasal spray), in hopes it will take the edge off some of his nasal symptoms that cause his lungs to get full of junk.

He also does his peak flow every morning (and night) to tell me how his lung capacity is.
250-275 is his "normal" and it varies for every person. When he first got home from the hospital, he was only blowing 100.  That tells you how very (very!) sick he was.

These are my Peak Flow Guidelines for Wyatt.
If his peak flow is 125 or lower, I am to take him to the ER.
If his peak flow is 250 or higher, he just takes his regular evening meds.
If it's below 200, he needs his nebulizer with Albuterol & Budesonide for 1 week, and I also need to see the doctor to get him on steroids.

Since he was so sick in April, I have started keeping track of his Peak Flows on a calendar I hang in the bathroom.  I feel like this allows me to see trends and have a better handle on where he's at.  It offers me a lot more peace because I can see if there is a negative or positive trend and I can also write on there what inhalers or meds he is using to help his lungs if necessary.

This week has been particularly stressful as he has been blowing about 210-230 each day and I've been waiting (and praying!) for those numbers to increase so we can avoid steroids, which help his lungs, but decrease his immunity to further illness. 

 Every evening he takes probiotics and Singulair, which helps with asthma, and we do his Peak Flow again, and check his oxygen levels with this Children's Oxygen Saturation Monitor we got from Amazon for less than $30.  His oxygen is usually between 96-98.  If his oxygen gets below 92 I should be watching really carefully, and if it gets to 90, we should be in the ER, no question.  

When his numbers are questionable (as they are now) we introduce the Flovent inhaler (seen here- it's orange) for about a week, until the numbers improve.  He does the inhaler for two puffs twice a day (morning & night).  It's a steroid preventative inhaler, meant to strengthen his lungs and help give them a boost.  It has kept him from needing the nebulizer or steroids this time around, so I'm very grateful for it!

 When he does dip below the 200 mark on his peak flow meter, then he has to start doing the nebulizer, using two different medications in it- Albuterol & Budesonide.  The Albuterol is a rescue medication that immediately helps him breathe better, while the Budesonide is a steroid meant to strengthen his lungs so they can get better.  The treatments are loud and long, and Wyatt hates them.  But honestly, he's a pretty good sport about it.  What sucks, though, is that once he starts them, he usually has to do them morning and night for about three weeks.  So it's a long haul.

And finally, this is his albuterol inhaler, which we take with us EVERYWHERE in case he goes into respiratory distress.  He can take two puffs and feel instant relief.  When we're at home, I have him use the nebulizer to get Albuterol because the delivery is more efficient, but when we're on the go, this is far more convenient.


In all, it's stressful some days to have two children whose health I have to constantly monitor... but I feel like six months in, it's finally "normal" and I'm able to breathe deep, even though they aren't always well.  I have to work hard some days to not be bitter that I have to deal with all that I have to deal with while other people have healthy children.  But there are other days when I think how lucky I am that my kids only have epilepsy and asthma.

My silver lining is that Logan's epilepsy & Wyatt's asthma make me super grateful for Jack & Carly's good health.  They also remind me to trust God for the things I can't control.  



Tabitha Studer said...

You are awesome and so dedicated to this babes. Not only with your charts and advocacy on their behalf- always getting to the bottom of it - but also seeking put your own knowledge through books and speaking your truth here to help other families dealing with the same struggles .sending my love to you and your beautiful kiddos always! Xoxox

Ashley said...

You are such a good mama! That is a LOT for one person to carry.
I totally understand when you said, "I have to work hard some days to not be bitter that I have to deal with all that I have to deal with..." Instead of health issues, we have learning issues around here and some days can just feel so HARD. I'll pray for you if you pray for me. :)