Shift in focus

I finally reached my tipping point. After pushing for years for Elin to be considered for the Ketogenic diet we still were not beginning.... why? Oh because SCH really likes to "vet" their patients and I couldn't hang I guess. Here's the short version.

I had heard about this "miracle diet" from other parents and people in the epilepsy community when I would discuss Elin's seizure history. When Elin's seizures were getting worse and not being controlled by anti-epileptic drugs very well I raised the question to her neurologist or anyone that was helping us in the ER or the doctors during rounds while she was staying in the hospital. The answer was always the same. They had about 3 or more drugs on their list of possibilities that they preferred we try first. So we did- all of them and now she is on three anti-epileptic drugs and has apneic seizures every week. They are obviously working miracles.

So when we came back from Mexico right before Christmas I sent an email to our new neurologist (she got moved to an epileptologist) and told him we would be starting the diet. So the process began in December. Here we are into March and still no diet. We have been to SCH to meet with the Keto epileptologist (yet a different neurologist); to meet with the dietitians and nutritionists, and to have a swallow study. Mind you, she is admitted to the hospital for three to four days to start the diet so they can monitor her. My feeling was many of these things could be done during her stay. These appointments are all on top of all the other zillion "normal" appointments Elin has for her multiple health issues. When we came back from Sun Valley I sent another email stating I wanted Elin to start the diet NOW.  So I got a call to bring her back in yet again for another consultation. That did it, I was done.

I have been researching another possible option for Elin while all this was going on. There has been a lot of buzz around cannabis and its use in epilepsy. There was a 60 Minutes special a few years ago on a specific kind called Charlotte's Web that started the ball rolling I believe. I was intrigued and dove in, From all my research I think it is worth a shot for Elin. There are very few side effects and the benefits range from somewhat helpful to stopping seizures forever. So what the heck, instead of overhauling her diet and feeding her 90% fat (which can be hard on her body as you might imagine) lets try this first.

When I told the neurology and keto team at SCH I wanted to give CBD oil a chance first they laughed at me. They cited multiple reasons for their concern from purity, to efficacy and even pesticide scares. What? The biggest problem we face are the possible drug interactions with all the crazy sh*t they have her on right now. I understand that CBD oil is not overseen by a federal agency but we will be going through a naturopathic doctor and doing this as medically safely as possible. I'm not going out to the street corner and scoring some pot to bring home for my daughter to get high on. Come on people- really? It is being used as an herbal supplement/medicine. Some strains have trace amounts of THC (the psychedelic high inducing part of marijuana) but most have none so she won't even feel anything. The more we get into this the more I will learn and I will share all the details especially if it helps.

So that's our new path. It hasn't be easy to find a Naturopath who prescribes CBD and feels comfortable working with Elin. But I think we have found a winning team now and I am very optimistic about this new track.

We had to switch Elin to tablets for most of her meds in prep for the Keto diet and she hates them. Think about mashing up Tylenol and sprinkling it on your food- it pretty much tastes like poison. So she spits it out. Well, low and behold, some of the days when we knew we didn't successfully get all her meds in she was a different kid. Her eyes sparkled, she moved around more, she talked more, she laughed more. This made Myles and I realize just how drugged our daughter is. I don't even think we know the real Elin. I'm so excited to meet her- I have high hopes (no pun intended) this CBD oil will help us control her seizures more and allow us to wean her off some of her less helpful drugs.

Anya's turn- Spa-spital

Wow- Swedish Issaquah is NICE! I gave birth to Elin here and remember being sad about having to leave so abruptly when she was transferred to the NICU at Swedish First Hill after she stopped breathing at 12 hours old. This hospital is PLUSH!

We are use to SCH. By "use to" I mean we should have our own furnished suite by this time but alas we are always assigned to miscellaneous rooms in the ER, ICU and general recovery floor in River. At SCH we share rooms; we have roommates that have multiple "loud" guests/family members and leave the TV on ALL NIGHT. I overhear conversations I shouldn't be listening too and other inappropriate things that usually only close friends disclose to one another. 

Swedish Issaquah is the Ritz Carlton- my friend refers to it as a "spa-spital". It is amazing. Anya is staying in the "peds" unit- she is the ONLY patient. We have all the nurses' attention and the doctors and other specialists come specifically to see her. I'm sure it's different when the 10-20 rooms are full but seriously- this is unreal. 

Oh- why are we here. Well for starters- it's not about Elin..........

LONG STORY- Here's the short version.....

Anya complained about her foot on Sunday and had another fever. (She had been sick the previous week and missed skiing on Sunday and school on Monday and Tuesday).  We skipped skiing (again), but I had a sinking feeling something wasn't right. I sent her to school on Monday and then to urgent care at SCH Bellevue on Monday night when she was still limping in the afternoon (when I made her walk home from the bus stop) (no guilt here, ahem).  They diagnosed her issue as "acute reactive arthritis" after doing a x-ray and hearing about her recent illness. No blood tests were done or even suggested.
I tried to send her school on Tuesday but she wouldn't walk. On Wednesday it was better again but she was in MAJOR pain when she came home and the fever came back Wednesday night. Thursday morning we went to the pediatrician and the rest is history! 

She is in good spirits but the constant doctor interruptions and IV pokes (she keeps blowing her IV's) are tough. She has been a trooper though- man am I proud of her. The silver lining I'm trying to grasp from all this trauma is that Anya is an amazingly stoic patient because of all the terrible things she has had to witness her sister endure. Anya has attended many of Elin's early morning (trough) blood draws where it takes the phlebotomist 3-7 pokes to get a vein that allows enough blood to be drawn for the multitudes of tests. She has seen her sister go in for multiple surgeries, scans, MRI's, and other procedures and return to us wounded but well cared for. Anya has learned from all of these experiences and when the nurses ask her to be still to try for a third time to get a good vein for her IV, she sits still and silently weeps, but stays stoic and strong through the process. When the task is done she cries and needs comfort but, man, am I learning a lot from watching her. She is amazing and oh so wise beyond her years. 

After many tests, scans, labs, x-rays,and MRI's they have determined she has a staph infection in her bones on her foot. The treatment is many days of in hospital IV antibiotics and then a long course (several weeks) of oral antibiotics at home. 

Timing wise we are hoping at the earliest to be discharged on Monday; at the latest Thursday. She REALLY wants to do her Valentine party at school so I'm dangling that carrot to get her to walk and use her foot and get out of the hospital as soon as she is able. She can return to school on oral antibiotics as long as she is well enough physically to attend.

Crappy stuff but we are surviving.  When both my kids couldn't walk this week I was a little hopeless, but my spirits are returning. This IS curable and my kids are TOUGH!

MRI Results

We made it through the surgery. Elin was under for almost three hours and came out of it just fine. The MRI took a really long time because they needed to get a good look at her brain. She has had a lump on her CI by her ear for a while and it has been getting bigger. The surgeon thought it would be an abscess stitch but once he got in there he said it was a sebaceous cyst. He drained it but didn't remove it.

We were also concerned that her entire implant had shifted forward some time ago and after opening her up he confirmed that yes, it had shifted. We are hoping this is the last time we need to cut open her head but he said that if the cyst fills up again he will have to remove it and then he will open her head all the way up again and move the CI back to where it is supposed to be. Not the best news!

Elin had seizures everyday for nearly a week following her procedure. It was a rough few days for us that's for sure. She also would have nothing to do with the bandage on her head. She had removed it before even leaving the OR. The nurses tried to use a bandage and a neoprene headband; she wasn't a fan of that either. So last Thursday I enlisted Susie to come up and help me and we spent the entire day trying to keep her hands off her head and tried to distract her. She is no dummy; when her hands were restrained her would lay on her back and rub her head back and forth until she worked the headband off. By Thursday night we gave up and let her wound breathe and hoped she wouldn't scratch or touch it. Sure enough, Once the head wrap was off she left her head alone.

The doctor recommended a full week without wearing her CI so she couldn't hear and that was also a problem. The whole post surgery was pretty much a disaster but we made it through and now a week out we are trying to return to normalcy. She has been going to school this week and has remained seizure free there- so that's something!

Yesterday we started letting her wear her CI again. I wish I would have had my phone by me when I put it on her. She lit up- started giggling and babbling. It was obvious she was VERY excited to be able to hear again. Unfortunately her incision became swollen yesterday so she couldn't wear it all day.

We met with her epileptologist (neurologist) yesterday to go over the results of her MRI. It revealed that her brain has continued to grow and develop as any brain typically does but now that it is bigger we can see more of the structure. When she had her first MRI at 7 months they were able to identify her partial agenesis of her corpus callosum. Basically this means she is missing part of the brain matter that connects the two hemispheres of the brain. From her most recent MRI it appears in some cross sections that her corpus callosum connects (albeit thinly) in some spots. It is still much smaller then a typical corpus callosum but it has continued to develop and grow. She does however have a broader issue- it's call cortical malformation- meaning parts of her brain were not formed correctly in inutero and no amount of maturation will fix that. So her left and right temporal regions are not normal. We know from her EEG's that the seizures tend to come from the left temporal region and the MRI supports that the tissue in this region has not formed correctly.

So what's next- well that's the tricky part. Perhaps more EEG's, sleep studies and even another MRI to measure how her brain functions under certain tasks. This news did not make Myles or I happy. We thought this MRI was the only one she would need and we are not planning to put her under the knife again to remove the magnet so they can do this all over again- no thanks!

So we are moving in another direction called the ketogenic diet. It is a special diet that can sometimes help kids with all different kinds of intractable epilepsy. Its is 90% fat- basically no carbs, minimal fruit and veggies. All oils, butter, creams, high fat meats etc. I will write a separate post about this because it is intense and kind of confusing but very promising.

In summation- no real definitive answers to our most pressing questions. Can she under go epilepsy surgery? Not without many more tests. Does the MRI explain why she has these seizures? No, but it can tell us the area where the seizures are coming from is abnormal. Can we control her seizures better? With the new diet- perhaps.

Kindering Video

If you haven't seen it yet, this is the video that Kindering made featuring Elin and another little girl named Kelly. They have used it for the past two years so we weren't able to post it, but now it is up on You Tube so we can share it with everyone. So much has changed in the last two years but it still makes me cry every time I watch it. You might want to have tissues handy. 

Feliz Navidad

Ahhhh, a trip to Mexico was just the R&R our family needed. It got off to a bit of a rocky start with Elin having several seizures the first few days we were in Cabo, but she stopped having them and our vacation went a little smoother after that. Anya found a little girl friend almost immediately and spent the entire week playing with her. Vivia was 4 and was on vacation from Utah with her parents and grandparents. They were really nice people and we took turns watching each other's girls by the pool and on the beach. Every day at 2pm they rang the "happy hour" bell and the girls went swimming over to the pool bar to get their virgin Pina Coladas. It was really nice for Anya to have a friend to play with while we were there. Anya was a fish, she spent most the day in the pool and came back with a lovely tan despite all the sunscreen we lathered on her body.

Susie spent a lot of her time in the condo watching Elin. After the first few days we brought her out more and she spent some time in the pool and on the beach. Her sleep was terrible at night because her meds were making her manic in the middle of the night so Myles and I took a lot of naps. Susie even had Elin sleep one night down in their room so Myles and I could get a full nights rest. That was special!

We stayed about 3 miles outside of San Jose so we ventured into town a couple times but never actually went into Cabo proper. No late nights at the Giggling Marlin for these old people- we just wanted to get some rest! Twice we went to a great snorkeling beach, once with just Anya and Myles and myself and the other time with the whole gang. Elin enjoyed the sand and the small waves and Anya liked the fish once she got use to them.

The plane rides both to and from went very smooth. Elin slept both ways (which was a first for her, she NEVER sleeps anywhere but her crib) so we felt lucky to have some quiet time on the trips.

Back at home we felt like someone pushed fast forward towards Christmas and I raced around trying to catch up for the "looming" holiday. We were able to get pictures with Santa and all the gifts bought and wrapped in time for Christmas. We had several family Christmas parties to attend and hosted our annual Christmas Eve cocktail party as well. By Saturday the girls were pretty well "Christmased" out but rallied to have one last blast at my parents for my family's Christmas celebration.

Christmas was a success by all accounts. Myles got a new bike so he and Anya were able to go on a bike ride together for the first time. Elin got a "laptop" and she has been busy helping Myles with his TPS reports.....

Surgery Canceled due to Croup

We joke in our family that we really can't plan anything. Elin always has her own idea about the way things are supposed to play out. This surgery was no different. She has been REALLY sick with Croup or some other kind of terrible cold virus and she couldn't have surgery yesterday. We kept hoping she would pop out of this illness but it is not going away. I took her to the pediatrician on Tuesday and he gave her some steroids and a breathing treatment. She was on the mend for about 12 hours but has become sicker again. I will be taking her back to the doctor tomorrow if her fever doesn't go away.

The surgery will be rescheduled for 4-6 weeks out from now when she is fully recovered from this illness. It was severely disappointing to not be able to go through with the process. We went into the hospital yesterday and spent 2 hours waiting and prepping for surgery only to have the anesthesiologist tell me that the risks out weigh the benefits and we should postpone. I wish they would have told me that prior to making all the arrangements and going to the hospital but the surgeon suggested we bring her in and see what they say. I have learned my lesson, next time I will call the hospital and get a solid yes or no before heading in if she is ill at all.

The silver lining of course is that we get to have Thanksgiving with our family but it will be a short visit given Elin's continued illness.

So we still need healing thoughts and we are trying our best to get our little one well again.

Happy Thanksgiving and remember to share with your family the many things we all have to be thankful for.

Thanksgiving surgery

Since the last blog post Elin has had more bouts with seizures. We spent one night in the ICU in late October and just spent 5 hours in the ER yesterday. We were at Children's for her pre-op appt yesterday and she had 4 seizures in 2 hours so we headed straight from her appointment to the ER. Both times we have been admitted she has come in the ER doors seizing, not breathing and blue so we get rushed back to the "big" room immediately. I chalk this up to Elin being impatient; she simply doesn't want to wait in the ER waiting room so we just "come in hot" as I have been calling it.

Against our will a new tradition of spending Thanksgiving in SCH is beginning. Last year we were in the ICU during Thanksgiving and this year we will most likely be staying the night Wednesday night after surgery hoping to go home on Thursday. Of course, even if we are home Elin's head will be wrapped and I'm not sure she will be able to go anywhere.

We were able to get her MRI scheduled but it had to be on the 25th, hence the hospital stay. It's been a bit of a battle trying to coordinate all the different departments (neurology, imaging, otolaryngology) to get the procedure scheduled. So once they gave me the date I said sure, let's just get it done.

Elin's new straps for her AFO's

Elin's implant in her head has moved forward from where the surgeon had originally placed it. During the original surgery they drill a "well" in the skull and recess the implant in the well. The bone starts to grow over the implant and it holds it in place. Well Elin's skull was too thin at the time of implantation to drill a very deep well so her implant has shifted. She also has had a growing "lump" on her right forward side of her implant. We have watched it carefully but over the last few months it has tripled in size and she seems to be irritated by it. We are concerned it is causing her pain and we were worried about what might be causing it. Implants can be rejected if the body decides to get rid of it.

We met with the surgeon yesterday to discuss what the procedure will look like on Wednesday. They will put her under anesthesia, remove the magnet, take her to the MRI, bring her back and then they will deal with the implant issues. Our surgeon thinks the bump is an abscess caused by an internal stitch not fully disintegrating after her original surgery. He plans to drain it and after he does that he can asses how far the implant has moved and if he wants to attempt to move it back. We could be looking at a short surgery or a really long surgery depending on what he decides needs to be done once he has "cut her open." Unfortunately there are a lot of risks associated with both removing the magnet and moving the device. The device could be compromised- that would be terrible. We are hoping for the best.

So we don't know if we will be home for Thanksgiving and even if we are home what shape our family will be in.

We wish everyone a Happy Thanksgiving and please send thoughts and prayers our way for this to be a quick and relatively painless procedure of our little girl.

Make sure you toast to good health this holiday- it really is the most important thing.