Upped the dose again

So Cailyn is doing awesome. We upped her dose again July 29th to .50 ml dose 5000mg twice a day.

We'll test blood in a few weeks and then we see neurologist again in mid-September. We'll see if we can take away an RX seizure med at some point soon. She's doing great. A few seizures here and there but she's super awake and alert.... and HAPPY. Fun giggles often.

Camp has been awesome this summer. Lots of great activities---swimming, horseback riding, dance parties and a sensory room with glowing and lights that are K's favorite.

Today they had a color run. 

They asked KK to smile. She didn't agree. Fun times.

We're in Week 15

Still at .30 ml dose and she's doing really good. Super active. Still having seizures but awareness is amazing.

Cailyn felt the need to show off for Grandma at PT Monday. Doing crunches and purposefully reaching above her for toys. Also definitively said nut-uh when asked to hold her folder at camp and shook her head no when asked another question.

Week 13

Things are going well.

Cailyn was sick with a high fever for two days a week and a half ago and you could tell it lingered. She was really just ... meh. Slept some, but her "sparkle" (which is the term I'm stealing from the family of K's b'day buddy Farren) was just dimmed.

The past two days she totally rallied. She is super hyped up again and "dancing." Legs kicking, arms flapping, giggles.

We're three months in testing Charlotte's Web and we're definitely not seeing negative side effects. I think we'll stay at this dose .30 ml twice a day for at least one more month, do blood work and then decide if we'll increase again.

She seems to have 1 seizure a day, in the am after waking up and before getting on the bus. But we're only seeing this 3-4 times a week. They appear to be shorter in duration as well. We're not seeing them otherwise but they are super short so school and bus staff may miss them. No reports from them on seizure sightings.

My goal is to remove at least one more of Cailyn's prescription seizure meds and leave her on one medication plus Charolotte's Web.

If we increase mid-July then that would be two more months testing that dose until we see her neurologist in September. We'll definitely consult him about any rx meds changes--maybe add another EEG in before further changes.

Week 9

It's going well. We are noticing positive differences for Miss. Cailyn. Seems to have more alertness and awareness and seizures are diminished in quantity and length. She's been doing a lot of hair pulling which we think is sensory seeking. I wonder if her senses were so dulled before with all the meds and now things are waking up.

She's been on a lose dose so far and today, after some crazy lab issues for blood tests, we increased her dose. Doubled it actually.

I think we'll stay at this dose maybe 1-2 months and possibly recheck med levels in blood.

Of the two seizure meds she's taking one can go high and one can go low in the blood stream. I'd like the cbd to push the low one so low it's not in an effective rate and still have good seizure control. Then we could talk about taking it away and getting K to one prescription seizure med.

I don't believe she'll be able to stop seizure meds but going from 4 this time last year to where she is now is a big deal.

I'll update again soon.

8 weeks and still going good

Awesome face painting at the Epilepsy Walk
Cailyn's 9th time participating

We're at the 8 week mark and still good. She's still having seizures, we're seeing one a day but she seems to recover quicker. She's very much awake and family that was visiting a few weeks ago said they really saw a difference in her general alertness. She seems stronger too.

We were hoping to double her dose of oil after week 4 and did blood work to confirm her levels of her seizure drugs Onfi and Banzel. CBD can push Onfi higher and possibly toxic levels and push Banzel lower.

The blood tests have been a debacle.

Sample 1--lab tested the wrong drug and then didn't have enough blood to test the correct drug (they also jerked us around for 3 weeks saying it was coming)

Sample 2--Vein whisperer Nurse Shelby decided it was going to another lab--checked the materials from the lab to make sure she sent the sample in the correct vial--all good--and then it gets to the lab and they said the info in the book was incorrect--wasted sample

Sample 3--that was this Monday--had to stick her twice to get a decent amount of blood in the vial--poor girl is cursed with Mommy's tiny and perpetually rolling veing--they said it would take a week to get results.

So we're holding steady at the .15ml twice a day dose and hoping to get clearance to bump up the dose. It would be awesome if we could get down to one prescription seizure drug and the oil. I think she'll always need to be on some type of seizure medicine but at this time last year she was on 4 and now down to 2. Her neuro and I both said we didn't think that would be possible at her last visit---kinda whispered so we didn't jynx it.

So to recap--we're not seeing any negative side effects so far at this dose. Her sleeping doesn't seem to have increased or number of seizures.

One interesting thing is her body temp has increased to a more normal level. She's generally in the 96-97 range and one side of her body in noticeably colder to the touch (suspected from brain damage from infantile spasms) but now her temp is normal in 98s and her left hand doesn't feel so cold all the time. So we'll see. Maybe other benefits.

Will update again soon.

The end of week 5

Cailyn is doing great. No bad side effects. Seems to be a reduction in length of seizures but they are still coming. The biggest change Grandma, Grandpa and her pediatrician noticed has been an increase in alertness. We had a delay on lab results to test levels of seizure meds in her blood but once we get that back we'll increase the dose of CBD, probably doubling it. Then we'll probably stay there 2-3 months, test blood and then maybe lower one of her prescriptions. I'd love to get her down to one RX seizure med and the CBD oil. 

Week 1 in the books

week one went well--cautiously optimistic

I was home with Cailyn for a good chunk of the week since it was spring break.
Both Curt and I agree that the seizures that were happening the few weeks prior to starting CBD did not show their ugly heads this week.

I'm not going to start celebrating yet. But she was having them regularly and then this past week gone.

Hoping for Success--And testing a new treatment

I know many people have seen the amazing stories about people with seizures responding greatly to cannabis oil.  After much thought and consideration we started Cailyn on cbd oil called Charlotte's Web.

Our hope is for better seizure control and reduction of prescription meds. Today Cailyn had her first two doses. 10:30 am and 10 pm.

It's an expensive option since no insurance will pay but not as expensive as originally thought. Originally we thought $250-700 a month but her dose is so small it's going to be $250 for approximately 8-10 months.

So far so good.  She had a good day. We need to watch for any bad side effects like extreme lethargy and check levels of medication in her blood in two weeks.

The oil is disgusting though. The hemp oil is mixed with olive oil but it smells earthy like wheatgrass. Super nasty. Maybe we should have gotten the mint chocolate flavor.

Milestone Achieved--First Lost Teeth

I'm well overdue for updating the blog. Lots has happened and at some point I'll try to catch up.

Today Cailyn hit a big milestone. Her first lost teeth.

It's a bit bittersweet. She hit this milestone on time, just as her non-disabled peers, but she really won't understand or appreciate the tooth fairy. I decided the tooth fairy will leave her money and then Miranda, Cailyn and I will go pick out some new hair bows for Miss K. Miranda likes Tinker Bell and fairies so it will be fun.

Happy 2nd Birthday Miranda Rose

Our little Randa Bear turned 2 on Sunday. The time has flown. She is a sassy, smart, loving little girl. She is tender with her sister and loves her so much. She makes me laugh almost daily with her Miranda'isms. Today's was "Oh Dear", I mean really where did that one come from?

She was running around too much at her Birthday Party so I just have a lot of blurry pics of her.

Super Cheese

Driving a car at Chuck E Cheese with Stuart Little

Not a tremendous fan of the pigtails

But loves the snow